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Ariella loves investigative reporting, personal stories that interrogate power, and spicy vegan cooking.","avatar":"https://secure.gravatar.com/avatar/a49317e9a9fc1762b408b2ca90b38a13?s=600&d=blank&r=g","twitter":"ariellaudio","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"news","roles":["subscriber"]},{"site":"forum","roles":["editor"]},{"site":"perspectives","roles":["administrator"]}],"headData":{"title":"Ariella Markowitz | KQED","description":"KQED Contributor","ogImgSrc":"https://secure.gravatar.com/avatar/a49317e9a9fc1762b408b2ca90b38a13?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/a49317e9a9fc1762b408b2ca90b38a13?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/amarkowitz"}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"news","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California Report","link":"/californiareport"}]},{"key":"menu2","items":[{"name":"Arts & Culture","link":"/arts","type":"title"},{"name":"Critics’ Picks","link":"/thedolist"},{"name":"Cultural Commentary","link":"/artscommentary"},{"name":"Food & Drink","link":"/food"},{"name":"Bay Area Hip-Hop","link":"/bayareahiphop"},{"name":"Rebel Girls","link":"/rebelgirls"},{"name":"Arts Video","link":"/artsvideos"}]},{"key":"menu3","items":[{"name":"Podcasts","link":"/podcasts","type":"title"},{"name":"Bay Curious","link":"/podcasts/baycurious"},{"name":"Rightnowish","link":"/podcasts/rightnowish"},{"name":"The Bay","link":"/podcasts/thebay"},{"name":"On Our Watch","link":"/podcasts/onourwatch"},{"name":"Mindshift","link":"/podcasts/mindshift"},{"name":"Consider This","link":"/podcasts/considerthis"},{"name":"Political Breakdown","link":"/podcasts/politicalbreakdown"}]},{"key":"menu4","items":[{"name":"Live Radio","link":"/radio","type":"title"},{"name":"TV","link":"/tv","type":"title"},{"name":"Events","link":"/events","type":"title"},{"name":"For Educators","link":"/education","type":"title"},{"name":"Support KQED","link":"/support","type":"title"},{"name":"About","link":"/about","type":"title"},{"name":"Help Center","link":"https://kqed-helpcenter.kqed.org/s","type":"title"}]}]},"pagesReducer":{},"postsReducer":{"stream_live":{"type":"live","id":"stream_live","audioUrl":"https://streams.kqed.org/kqedradio","title":"Live Stream","excerpt":"Live Stream information currently unavailable.","link":"/radio","featImg":"","label":{"name":"KQED Live","link":"/"}},"stream_kqedNewscast":{"type":"posts","id":"stream_kqedNewscast","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/newscast.mp3?_=1","title":"KQED Newscast","featImg":"","label":{"name":"88.5 FM","link":"/"}},"news_11962056":{"type":"posts","id":"news_11962056","meta":{"index":"posts_1591205157","site":"news","id":"11962056","score":null,"sort":[1695391258000]},"guestAuthors":[],"slug":"non-verbal-teen-symphony-debut-los-angeles","title":"Non-Verbal Teen to 'Take on the World' With a Symphony Written in His Head","publishDate":1695391258,"format":"standard","headTitle":"Non-Verbal Teen to ‘Take on the World’ With a Symphony Written in His Head | KQED","labelTerm":{"term":26731,"site":"news"},"content":"\u003cp>\u003cem>This story was updated on Wednesday, Sept. 27 to reference the ongoing debate in the autism community over “facilitated communication,” and to include the perspective of Jacob Rock’s neurologist on his ability to type independently.\u003c/em>\u003c/p>\n\u003cp>At first glance, the Rock family’s house on top of a hill in Los Angeles’ Eagle Rock neighborhood looks much like the others on the block, except that it’s painted a deep blue.\u003c/p>\n\u003cp>Once you walk down the driveway, however, it’s clear music lovers live here.\u003c/p>\n\u003cp>There’s a professional stage and tables set up for backyard concerts followed by a home music studio that houses a giant record collection. A variety of musical instruments are scattered around the space. Jacob Rock, 19, loves to bang on whatever is nearby: congas, wind chimes, the piano.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Jacob was diagnosed with autism as a toddler. As he grew older, he would often flail his arms and hit, pinch, or punch himself to the point of breaking skin. He could verbalize only two words: “yes” and “eat.” He didn’t have the motor skills to point to the right answers in school. Some of his teachers told his parents that he probably had a very low IQ because he couldn’t speak.\u003c/p>\n\u003cp>But Dr. Margaret L. Bauman, one of Jacob’s neurologists, disagreed.\u003c/p>\n\u003cp>She thought Jacob could learn to type and unlock his ability to communicate. It was a journey that took seven long years. During shelter-in-place in 2020, Jacob finally made a breakthrough, pecking out letters with one finger on an iPad. He was 16.\u003c/p>\n\u003cfigure id=\"attachment_11960141\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11960141 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED.jpg\" alt=\"A person uses an ipad to type a sentence.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Jacob Rock uses an iPad to communicate at the family’s home music studio in Los Angeles on Friday, Sept. 1, 2023. His neurologist confirms that even though his father holds the device for him, Jacob types independently. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bauman has been working with Jacob since he was 5 years old. Based on her observations of him, she confirmed that he’s now capable of typing and communicating independently.\u003c/p>\n\u003cp>There’s serious, ongoing debate in the autism community about whether kids like Jacob are actually typing on their own, or whether their communication is being facilitated by parents or other caregivers who are manipulating their devices or guiding them as they type. But Bauman says she has seen no evidence of that happening with Jacob.\u003c/p>\n\u003cp>“I understand the controversy about facilitated communication,” Bauman said. “I do not see this as facilitated communication. [Jacob] has a means of communicating what his thoughts are.”\u003c/p>\n\u003cp>“He started really expressing himself and typing in full sentences,” Paul said. “Everything was spelled correctly.” [pullquote size=\"medium\" align=\"right\" citation=\"Jacob Rock, composer, 'Unforgettable Sunrise'\"]‘It was damn, damn satisfying that I could claim my terrific identity and show everyone my intelligence.’[/pullquote]“It was damn, damn satisfying that I could claim my terrific identity and show everyone my intelligence,” typed Jacob, when asked about what it felt like to finally be able to communicate in words.\u003c/p>\n\u003cp>One of the first things he told his parents on his text-to-speech app was: “My name is Jacob. Not Jake.”\u003c/p>\n\u003cp>“He just wanted to say, ‘Look, I’m here,’” Paul said. “‘And you’ve been underestimating me the whole time. But I’ve been watching and listening.’”\u003c/p>\n\u003cp>Soon, Jacob started writing poetry, which Paul would post on Facebook.\u003c/p>\n\u003cblockquote>\u003cp>\u003cem>Your Assumptions Are Wrong\u003c/em>\u003c/p>\n\u003cp>\u003cem>By Jacob Rock \u003c/em>\u003cem>🌿\u003c/em>\u003c/p>\n\u003cp>\u003cem>Everything I read is digested in my brain and locked away.\u003c/em>\u003c/p>\n\u003cp>\u003cem>I am a prisoner in my body but breaking out in style.\u003c/em>\u003c/p>\n\u003cp>\u003cem>I love my dad for rescuing me from the sadness.\u003c/em>\u003c/p>\n\u003cp>\u003cem>I make great noise every time I lay my mouth on my ipad.\u003c/em>\u003c/p>\n\u003cp>\u003cem>Mind over Matter will save my life.\u003c/em>\u003c/p>\n\u003cp>\u003cem>No matter what you think of me and my noises, I am listening and learning.\u003c/em>\u003c/p>\n\u003cp>\u003cem>My sadness is gone and I am tremendously ready to take on the world.\u003c/em>\u003c/p>\u003c/blockquote>\n\u003ch2>Becoming a composer\u003c/h2>\n\u003cp>Six months after learning to type, Jacob surprised his parents again. He told them he had a 70-minute symphony in his head. Composer and musician \u003ca href=\"https://www.roblaufermusic.com/\">Rob Laufer\u003c/a> helped Jacob translate that music to a score on the page. It’s called \u003cem>Unforgettable Sunrise\u003c/em>.\u003c/p>\n\u003cp>The title reflects his sunrise out of silence.\u003c/p>\n\u003cp>https://www.instagram.com/reel/Cxq7-laLFos/\u003c/p>\n\u003cp>The orchestra from USC’s Thornton School of Music \u003ca href=\"https://alextheatre.org/event/wild-honey-presents-unforgettable-sunrise\">premieres Jacob’s work \u003c/a>on Sept. 30 at Glendale’s Alex Theatre, conducted by \u003ca href=\"https://www.danielnewmanlessler.com/bio\">Daniel Newman-Lessler.\u003c/a>\u003c/p>\n\u003cp>While the symphony is joyous, it also chronicles the physical and mental distress Jacob has endured. He suffers from severe digestion issues and often has terrible stomach pain — something he couldn’t tell his parents about before he learned to type.\u003c/p>\n\u003cfigure id=\"attachment_11960142\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11960142\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED.jpg\" alt=\"A person with short hair and glasses sits at a piano.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Musician Rob Laufer is pictured at the Rock family’s home studio in Los Angeles. Rob Laufer has been working with Jacob Rock for about 2 years to translate Jacob’s vision into a musical score. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>That’s why his music has a bittersweet quality to it — pain and joy are always intertwined.\u003c/p>\n\u003cp>Jacob’s parents weren’t surprised that music became a way for him to channel his emotions. As a baby, Jacob always calmed down in the car when they played music really loud, and he would bang on instruments like drums and piano. [pullquote size=\"medium\" align=\"right\" citation=\"Rob Laufer, musician and composer\"]‘Everything he would say made sense, because it was coherent to his soul, to the story he wanted to tell.’’[/pullquote]At 18 months old, he started dancing in time to one of the Beach Boys’ most complex and avant-garde songs, “Cabinessence.” And, as a 10-year-old, he would go out on the porch in the middle of the night and play the wind chimes.\u003c/p>\n\u003cp>“I would wake up and our front door would be wide open at three in the morning,” Paul said. “So I knew he was serious about music.”\u003c/p>\n\u003cp>Jacob also grew up around music. His dad has spent years organizing concerts for charity through the \u003ca href=\"https://www.facebook.com/groups/WIldhoneyfoundation/\">Wild Honey Foundation\u003c/a>, including a string of sold-out, all-star autism benefit shows featuring the music of bands like The Beach Boys, The Kinks, Buffalo Springfield and The Lovin’ Spoonful. Sometimes, those concerts happened in the Rocks’ backyard. Sometimes, in larger venues.\u003c/p>\n\u003cfigure id=\"attachment_11961440\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11961440 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED.jpg\" alt=\"Two standing people talk with two seated peopl in an indoor setting filled with people and musical instruments.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Paul Rock and his son Jacob visit with the musicians during the first rehearsal of Jacob and Rob Laufer’s symphonic collaboration, ‘Unforgettable Sunrise,’ with a 54-person orchestra at University of Southern California in Los Angeles on Sunday, Sept. 10, 2023. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Laufer, the composer and musician, and Paul have collaborated on many projects over the years, including Wild Honey ensembles. Laufer also worked with the Los Angeles Philharmonic, Johnny Cash, Fiona Apple and other musicians. But when Paul called and asked him to translate Jacob’s musical vision to the page, he was daunted by the idea.\u003c/p>\n\u003cp>“I was fascinated and intrigued,” Laufer said. “But it seemed like this [was] going to be a wild, long ride. And I do not know what it’s going to be. It was a complete mystery.”\u003c/p>\n\u003cp>Jacob can’t sing or read music. His iPad can only express his voice in words. But he could describe the music he was hearing in his head in terms of mood, instruments and emotion. He sent Laufer an outline with detailed instructions for six movements, each with a title and carefully delineated sections with specific time codes. Here’s an example:\u003c/p>\n\u003cblockquote>\u003cp>ACT 4: Laughing in my Sleep\u003c/p>\n\u003cp>4a Scary Laughing (2 min)\u003c/p>\n\u003cp>flutes open with 2 minutes of scary laughing. At the 30-second mark, they are joined by congas and drums. Chimes join at the 45-second mark. At the one-minute mark, tuba joins the mix.\u003c/p>\n\u003cp>4b Drown Out (45 sec)\u003c/p>\n\u003cp>At 2-minute mark, they are drowned out by waves of violins and piano for 45 seconds. Fast and choppy.\u003c/p>\n\u003cp>(Harp 30 seconds)\u003c/p>\n\u003cp>4c Violins and piano takeover (30 sec) ***\u003c/p>\n\u003cp>The violins and piano take over for another 30 seconds.\u003c/p>\u003c/blockquote>\n\u003cp>Sometimes, the instructions were more poetic:\u003c/p>\n\u003cp>“The violins are demanding sleep and the horns are demanding pain,” Jacob wrote. “They battle for 3 minutes of call and response until the horns realize that they are defeated (Every manic horn met by soaring violin).”\u003c/p>\n\u003cp>Laufer was amazed at the precision of Jacob’s vision for the symphony. His directions were exacting, but always made the piece better. [pullquote size=\"medium\" align=\"right\" citation=\"Jacob Rock, composer, 'Unforgettable Sunrise'\"]‘I was unbelievably damn-floored by Rob’s ability to tap into my emotions. I can only say that he is my great collaborator and he reads my musical mind. He always can feel what I want and turn it into amazing notes.’[/pullquote]“Everything he would say made sense, because it was coherent to his soul, to the story he wanted to tell,” Laufer said. “Here’s a guy who was able to communicate his entire life of feelings,” he continued. “So I was getting this fresh fire to handle. I trusted it completely for what it was.”\u003c/p>\n\u003cp>Jacob grew to trust Laufer as well.\u003c/p>\n\u003cp>“I was unbelievably damn-floored by Rob’s ability to tap into my emotions,” Jacob typed. “I can only say that he is my great collaborator and he reads my musical mind. He always can feel what I want and turn it into amazing notes.”\u003cbr>\n\u003cspan style=\"text-decoration: line-through;\">\u003cbr>\n\u003c/span>Paul said Jacob is elated that his music will be performed in front of an audience.\u003c/p>\n\u003cfigure id=\"attachment_11961441\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11961441 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED.jpg\" alt=\"A group of four people talk and laugh in an indoor setting.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Rob Laufer (left) jokes with Jacob during the first rehearsal of Jacob and Rob’s symphonic collaboration, ‘Unforgettable Sunrise,’ at University of Southern California. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“He tells me all the time how much happier he is now,” Paul said.\u003c/p>\n\u003cp>Jacob is already working on a new project — a Mozart-influenced opera. He said being autistic has been a gift, allowing him to tap into the power of music.[pullquote size=\"medium\" align=\"right\" citation=\"Paul Rock, Jacob Rock's dad\"]‘He tells me all the time how much happier he is now.’[/pullquote]“I am staying out of wanting to have really damn, damn feelings on my failures,” he said through his iPad. “But I would tell people that I believe that I am gifted with having strong emotions about even the smallest notes in my work.”\u003c/p>\n\u003cp>For his part, Paul is astounded at Jacob’s resilience. After years of self-harming, he’s not lingering in a negative space.\u003c/p>\n\u003cp>“I think most people would be totally shattered, being ignored and being downplayed,” Paul said. “But to him, it was like water off his back. He still has amazing compassion and humor.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"Jacob Rock is autistic and couldn’t speak for many years. Once he learned to type, he wrote a 70-minute symphony debuting at the Alex Theatre in Glendale, Los Angeles County, on Sept. 30. ","status":"publish","parent":0,"modified":1696023739,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":53,"wordCount":1894},"headData":{"title":"Non-Verbal Teen to 'Take on the World' With a Symphony Written in His Head | KQED","description":"Jacob Rock is autistic and couldn’t speak for many years. Once he learned to type, he wrote a 70-minute symphony debuting at the Alex Theatre in Glendale, Los Angeles County, on Sept. 30. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Non-Verbal Teen to 'Take on the World' With a Symphony Written in His Head","datePublished":"2023-09-22T14:00:58.000Z","dateModified":"2023-09-29T21:42:19.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/3c7ac385-3b0a-490d-a580-b0850112f2de/audio.mp3","excludeFromSiteSearch":"Include","articleAge":"0","path":"/news/11962056/non-verbal-teen-symphony-debut-los-angeles","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>This story was updated on Wednesday, Sept. 27 to reference the ongoing debate in the autism community over “facilitated communication,” and to include the perspective of Jacob Rock’s neurologist on his ability to type independently.\u003c/em>\u003c/p>\n\u003cp>At first glance, the Rock family’s house on top of a hill in Los Angeles’ Eagle Rock neighborhood looks much like the others on the block, except that it’s painted a deep blue.\u003c/p>\n\u003cp>Once you walk down the driveway, however, it’s clear music lovers live here.\u003c/p>\n\u003cp>There’s a professional stage and tables set up for backyard concerts followed by a home music studio that houses a giant record collection. A variety of musical instruments are scattered around the space. Jacob Rock, 19, loves to bang on whatever is nearby: congas, wind chimes, the piano.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Jacob was diagnosed with autism as a toddler. As he grew older, he would often flail his arms and hit, pinch, or punch himself to the point of breaking skin. He could verbalize only two words: “yes” and “eat.” He didn’t have the motor skills to point to the right answers in school. Some of his teachers told his parents that he probably had a very low IQ because he couldn’t speak.\u003c/p>\n\u003cp>But Dr. Margaret L. Bauman, one of Jacob’s neurologists, disagreed.\u003c/p>\n\u003cp>She thought Jacob could learn to type and unlock his ability to communicate. It was a journey that took seven long years. During shelter-in-place in 2020, Jacob finally made a breakthrough, pecking out letters with one finger on an iPad. He was 16.\u003c/p>\n\u003cfigure id=\"attachment_11960141\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11960141 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED.jpg\" alt=\"A person uses an ipad to type a sentence.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_15-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Jacob Rock uses an iPad to communicate at the family’s home music studio in Los Angeles on Friday, Sept. 1, 2023. His neurologist confirms that even though his father holds the device for him, Jacob types independently. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bauman has been working with Jacob since he was 5 years old. Based on her observations of him, she confirmed that he’s now capable of typing and communicating independently.\u003c/p>\n\u003cp>There’s serious, ongoing debate in the autism community about whether kids like Jacob are actually typing on their own, or whether their communication is being facilitated by parents or other caregivers who are manipulating their devices or guiding them as they type. But Bauman says she has seen no evidence of that happening with Jacob.\u003c/p>\n\u003cp>“I understand the controversy about facilitated communication,” Bauman said. “I do not see this as facilitated communication. [Jacob] has a means of communicating what his thoughts are.”\u003c/p>\n\u003cp>“He started really expressing himself and typing in full sentences,” Paul said. “Everything was spelled correctly.” \u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"‘It was damn, damn satisfying that I could claim my terrific identity and show everyone my intelligence.’","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Jacob Rock, composer, 'Unforgettable Sunrise'","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>“It was damn, damn satisfying that I could claim my terrific identity and show everyone my intelligence,” typed Jacob, when asked about what it felt like to finally be able to communicate in words.\u003c/p>\n\u003cp>One of the first things he told his parents on his text-to-speech app was: “My name is Jacob. Not Jake.”\u003c/p>\n\u003cp>“He just wanted to say, ‘Look, I’m here,’” Paul said. “‘And you’ve been underestimating me the whole time. But I’ve been watching and listening.’”\u003c/p>\n\u003cp>Soon, Jacob started writing poetry, which Paul would post on Facebook.\u003c/p>\n\u003cblockquote>\u003cp>\u003cem>Your Assumptions Are Wrong\u003c/em>\u003c/p>\n\u003cp>\u003cem>By Jacob Rock \u003c/em>\u003cem>🌿\u003c/em>\u003c/p>\n\u003cp>\u003cem>Everything I read is digested in my brain and locked away.\u003c/em>\u003c/p>\n\u003cp>\u003cem>I am a prisoner in my body but breaking out in style.\u003c/em>\u003c/p>\n\u003cp>\u003cem>I love my dad for rescuing me from the sadness.\u003c/em>\u003c/p>\n\u003cp>\u003cem>I make great noise every time I lay my mouth on my ipad.\u003c/em>\u003c/p>\n\u003cp>\u003cem>Mind over Matter will save my life.\u003c/em>\u003c/p>\n\u003cp>\u003cem>No matter what you think of me and my noises, I am listening and learning.\u003c/em>\u003c/p>\n\u003cp>\u003cem>My sadness is gone and I am tremendously ready to take on the world.\u003c/em>\u003c/p>\u003c/blockquote>\n\u003ch2>Becoming a composer\u003c/h2>\n\u003cp>Six months after learning to type, Jacob surprised his parents again. He told them he had a 70-minute symphony in his head. Composer and musician \u003ca href=\"https://www.roblaufermusic.com/\">Rob Laufer\u003c/a> helped Jacob translate that music to a score on the page. It’s called \u003cem>Unforgettable Sunrise\u003c/em>.\u003c/p>\n\u003cp>The title reflects his sunrise out of silence.\u003c/p>\n\u003cp>https://www.instagram.com/reel/Cxq7-laLFos/\u003c/p>\n\u003cp>The orchestra from USC’s Thornton School of Music \u003ca href=\"https://alextheatre.org/event/wild-honey-presents-unforgettable-sunrise\">premieres Jacob’s work \u003c/a>on Sept. 30 at Glendale’s Alex Theatre, conducted by \u003ca href=\"https://www.danielnewmanlessler.com/bio\">Daniel Newman-Lessler.\u003c/a>\u003c/p>\n\u003cp>While the symphony is joyous, it also chronicles the physical and mental distress Jacob has endured. He suffers from severe digestion issues and often has terrible stomach pain — something he couldn’t tell his parents about before he learned to type.\u003c/p>\n\u003cfigure id=\"attachment_11960142\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11960142\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED.jpg\" alt=\"A person with short hair and glasses sits at a piano.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230901_Symphony_17-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Musician Rob Laufer is pictured at the Rock family’s home studio in Los Angeles. Rob Laufer has been working with Jacob Rock for about 2 years to translate Jacob’s vision into a musical score. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>That’s why his music has a bittersweet quality to it — pain and joy are always intertwined.\u003c/p>\n\u003cp>Jacob’s parents weren’t surprised that music became a way for him to channel his emotions. As a baby, Jacob always calmed down in the car when they played music really loud, and he would bang on instruments like drums and piano. \u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"‘Everything he would say made sense, because it was coherent to his soul, to the story he wanted to tell.’’","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Rob Laufer, musician and composer","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>At 18 months old, he started dancing in time to one of the Beach Boys’ most complex and avant-garde songs, “Cabinessence.” And, as a 10-year-old, he would go out on the porch in the middle of the night and play the wind chimes.\u003c/p>\n\u003cp>“I would wake up and our front door would be wide open at three in the morning,” Paul said. “So I knew he was serious about music.”\u003c/p>\n\u003cp>Jacob also grew up around music. His dad has spent years organizing concerts for charity through the \u003ca href=\"https://www.facebook.com/groups/WIldhoneyfoundation/\">Wild Honey Foundation\u003c/a>, including a string of sold-out, all-star autism benefit shows featuring the music of bands like The Beach Boys, The Kinks, Buffalo Springfield and The Lovin’ Spoonful. Sometimes, those concerts happened in the Rocks’ backyard. Sometimes, in larger venues.\u003c/p>\n\u003cfigure id=\"attachment_11961440\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11961440 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED.jpg\" alt=\"Two standing people talk with two seated peopl in an indoor setting filled with people and musical instruments.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_25-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Paul Rock and his son Jacob visit with the musicians during the first rehearsal of Jacob and Rob Laufer’s symphonic collaboration, ‘Unforgettable Sunrise,’ with a 54-person orchestra at University of Southern California in Los Angeles on Sunday, Sept. 10, 2023. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Laufer, the composer and musician, and Paul have collaborated on many projects over the years, including Wild Honey ensembles. Laufer also worked with the Los Angeles Philharmonic, Johnny Cash, Fiona Apple and other musicians. But when Paul called and asked him to translate Jacob’s musical vision to the page, he was daunted by the idea.\u003c/p>\n\u003cp>“I was fascinated and intrigued,” Laufer said. “But it seemed like this [was] going to be a wild, long ride. And I do not know what it’s going to be. It was a complete mystery.”\u003c/p>\n\u003cp>Jacob can’t sing or read music. His iPad can only express his voice in words. But he could describe the music he was hearing in his head in terms of mood, instruments and emotion. He sent Laufer an outline with detailed instructions for six movements, each with a title and carefully delineated sections with specific time codes. Here’s an example:\u003c/p>\n\u003cblockquote>\u003cp>ACT 4: Laughing in my Sleep\u003c/p>\n\u003cp>4a Scary Laughing (2 min)\u003c/p>\n\u003cp>flutes open with 2 minutes of scary laughing. At the 30-second mark, they are joined by congas and drums. Chimes join at the 45-second mark. At the one-minute mark, tuba joins the mix.\u003c/p>\n\u003cp>4b Drown Out (45 sec)\u003c/p>\n\u003cp>At 2-minute mark, they are drowned out by waves of violins and piano for 45 seconds. Fast and choppy.\u003c/p>\n\u003cp>(Harp 30 seconds)\u003c/p>\n\u003cp>4c Violins and piano takeover (30 sec) ***\u003c/p>\n\u003cp>The violins and piano take over for another 30 seconds.\u003c/p>\u003c/blockquote>\n\u003cp>Sometimes, the instructions were more poetic:\u003c/p>\n\u003cp>“The violins are demanding sleep and the horns are demanding pain,” Jacob wrote. “They battle for 3 minutes of call and response until the horns realize that they are defeated (Every manic horn met by soaring violin).”\u003c/p>\n\u003cp>Laufer was amazed at the precision of Jacob’s vision for the symphony. His directions were exacting, but always made the piece better. \u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"‘I was unbelievably damn-floored by Rob’s ability to tap into my emotions. I can only say that he is my great collaborator and he reads my musical mind. He always can feel what I want and turn it into amazing notes.’","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Jacob Rock, composer, 'Unforgettable Sunrise'","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>“Everything he would say made sense, because it was coherent to his soul, to the story he wanted to tell,” Laufer said. “Here’s a guy who was able to communicate his entire life of feelings,” he continued. “So I was getting this fresh fire to handle. I trusted it completely for what it was.”\u003c/p>\n\u003cp>Jacob grew to trust Laufer as well.\u003c/p>\n\u003cp>“I was unbelievably damn-floored by Rob’s ability to tap into my emotions,” Jacob typed. “I can only say that he is my great collaborator and he reads my musical mind. He always can feel what I want and turn it into amazing notes.”\u003cbr>\n\u003cspan style=\"text-decoration: line-through;\">\u003cbr>\n\u003c/span>Paul said Jacob is elated that his music will be performed in front of an audience.\u003c/p>\n\u003cfigure id=\"attachment_11961441\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11961441 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED.jpg\" alt=\"A group of four people talk and laugh in an indoor setting.\" width=\"2000\" height=\"1333\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED.jpg 2000w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/09/20230910_Symphony_28-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Rob Laufer (left) jokes with Jacob during the first rehearsal of Jacob and Rob’s symphonic collaboration, ‘Unforgettable Sunrise,’ at University of Southern California. \u003ccite>(Alisha Jucevic for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“He tells me all the time how much happier he is now,” Paul said.\u003c/p>\n\u003cp>Jacob is already working on a new project — a Mozart-influenced opera. He said being autistic has been a gift, allowing him to tap into the power of music.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"‘He tells me all the time how much happier he is now.’","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Paul Rock, Jacob Rock's dad","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>“I am staying out of wanting to have really damn, damn feelings on my failures,” he said through his iPad. “But I would tell people that I believe that I am gifted with having strong emotions about even the smallest notes in my work.”\u003c/p>\n\u003cp>For his part, Paul is astounded at Jacob’s resilience. After years of self-harming, he’s not lingering in a negative space.\u003c/p>\n\u003cp>“I think most people would be totally shattered, being ignored and being downplayed,” Paul said. “But to him, it was like water off his back. He still has amazing compassion and humor.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11962056/non-verbal-teen-symphony-debut-los-angeles","authors":["254"],"programs":["news_72","news_26731"],"categories":["news_31795","news_8"],"tags":["news_33232","news_19133","news_980","news_33233","news_33230","news_27626","news_33229","news_4","news_23345","news_33231"],"featImg":"news_11960138","label":"news_26731"},"news_11937857":{"type":"posts","id":"news_11937857","meta":{"index":"posts_1591205157","site":"news","id":"11937857","score":null,"sort":[1673559874000]},"guestAuthors":[],"slug":"significant-overlap-researchers-work-to-understand-connection-between-autism-and-gender-fluidity","title":"'Significant Overlap': Researchers Work to Understand Connection Between Autism and Gender Fluidity","publishDate":1673559874,"format":"standard","headTitle":"KQED News","labelTerm":{"site":"news"},"content":"\u003cp>As a toddler, Izzy Dier hated sundresses and loved Hot Wheels sneakers.\u003c/p>\n\u003cp>“I had a hunch, always, that I was way more masculine than my other female peers,” said Dier, who uses she/they pronouns.\u003c/p>\n\u003cp>As early as preschool, Dier started questioning her gender. When she was a teenager she began wondering if her testosterone was higher than average.\u003c/p>\n\u003cp>“I always had bushy facial hair and these little spots on my chin,” she said.\u003c/p>\n\u003cfigure id=\"attachment_11937863\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11937863\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-800x533.jpg\" alt=\"A transgender person with long dark hair and a shirt-dress smiles from their door at the camera.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Izzy Dier poses for a portrait at their home in San Francisco on Dec. 15, 2022. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The 23-year-old now identifies as gender-fluid. She clutches her rainbow-colored purse as she leans back on a bench in Buena Vista Park. This spot under towering oak trees is Dier’s favorite place in San Francisco. Normally when she’s walking around or driving, she wears headphones.\u003c/p>\n\u003cp>“Otherwise my anxiety spikes and I just can't help but gasp at every little thing,” said Dier. “And just like jitter and jolt.”\u003c/p>\n\u003cp>When Dier was 3 years old, she was diagnosed with autism. Her preschool teachers noted that she was impulsive and hyperactive.\u003c/p>\n\u003cp>People who are transgender or nonbinary are more likely to be autistic. \u003ca href=\"https://www.nature.com/articles/s41467-020-17794-1\">One large study found that it’s three to six times more common than in the general population.\u003c/a> Researchers are working to understand the connection and exploring how society can be more accommodating to people who live at this intersection.\u003c/p>\n\u003cp>“We see that there is a pretty significant overlap in both directions,” said Dr. Aron Janssen, a psychiatrist at Northwestern University's Feinberg School of Medicine. In other words, it’s also more common for people who are autistic to question the sex they were assigned at birth.[pullquote align=\"right\" size=\"medium\" citation=\"John Strang, director, Children's National Hospital's Gender and Autism Program\"]'[A]utistic people may be less moored and less yoked to social expectations. This means that they also might be less yoked to social gender roles.'[/pullquote]“Maybe there is something that is related to biology like hormonal differences,” said Dr. Lawrence Fung, a psychiatrist at Stanford University. “Females on the spectrum seem to have more testosterone, and masculine features on their faces. On the other hand, males on the autism spectrum, they have more feminine features.”\u003c/p>\n\u003cp>For example, clinicians have noticed that \u003ca href=\"https://pubmed.ncbi.nlm.nih.gov/22500012/939-y\">male patients with autism often have a high-pitched voice\u003c/a>, and research shows that \u003ca href=\"https://www.nature.com/articles/s41598-017-09939-y\">female patients with autism tend to have increased facial masculinity\u003c/a>.\u003c/p>\n\u003cp>Fung’s research also shows that the brains of autistic men and autistic women are different. The part of the brain responsible for sensory and motor functions may hold the key to this sex difference. Eventually neuroscience could help explain why people with autism are more likely to question their sex assigned at birth. There is a clear overlap between these groups, but a lot more research is needed to understand the roots of it.\u003c/p>\n\u003cp>Danielle Sullivan is curious about what scientists will discover about her lived experience.\u003c/p>\n\u003cp>“I didn't really like being a woman,” said Sullivan. “I didn't feel like a woman. I don't really feel like a man or male either, which is why I've sort of settled in the agender bucket.”\u003c/p>\n\u003cp>Sullivan is autistic. The 37-year-old counsels others on the spectrum in Lafayette, Colorado, as a neurodiversity coach. When she was diagnosed with autism five years ago, Sullivan felt relieved because it explained why she had always felt a little like an outsider.\u003c/p>\n\u003cp>“A lot of people seem to have a handbook that I had missed somehow for things like how to date, how to talk to people, how to dress,” she said.[pullquote align=\"right\" size=\"medium\" citation=\"Dr. Aron Janssen, psychiatrist, Northwestern University's Feinberg School of Medicine\"]'At the end of the day, it's really about helping people live self-actualized lives, where they're able to make choices and communicate those choices effectively. We need a health care system that is responsive to however those needs are communicated.'[/pullquote]Today Sullivan is comfortable in her own skin as an agender or nonbinary person with autism, but her childhood was challenging.\u003c/p>\n\u003cp>“I felt like I was failing constantly and like I just couldn't do it. There was just some kind of internal brokenness about me,” she said.\u003c/p>\n\u003cp>Sullivan wishes society was more accepting and more accommodating of people with autism. She has two children who are both on the spectrum.\u003c/p>\n\u003cp>“One of their quote-unquote behaviors: They're yelling, they're shaking their hands, they're rocking. It's like, ‘They're fine. They're happy. Leave ‘em alone.’ I just wish there was less judgment around that and more curiosity and interest,” she said.\u003c/p>\n\u003cp>She says the autistic brain is not a problem or something to be feared. In many ways, she says, her mind is more open and less hindered by societal norms and expectations.\u003c/p>\n\u003cp>Many experts say the psychology that Sullivan is pointing to may be driving the overlap between autism and gender identity.\u003c/p>\n\u003cp>“Autistic people take in and process social information in a somewhat different way than neurotypical folks,” said John Strang, director of the Gender and Autism Program at Children's National Hospital in Washington, D.C. “And because autistic people may be less moored and less yoked to social expectations, this means that they also might be less yoked to social gender roles.”\u003c/p>\n\u003cp>Janssen agrees, saying, “Some of the strengths that many people with autism have is looking at systems that are done because we've done them that way forever and calling it out as BS. People with autism can easily say, ‘This doesn't make sense to me. This isn't my experience.’”\u003c/p>\n\u003cfigure id=\"attachment_11937868\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-11937868 size-medium\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-800x533.jpg\" alt=\"A white person with long dark hair, wearing a sleeveless top and with tattoos on their right forearm, sits on a bed amid stuffed animals and colorful cushions, playing guitar.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Izzy Dier plays guitar at their home in San Francisco on Dec. 15, 2022. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>That is definitely true for Izzy Dier back in San Francisco sitting at Buena Vista Park.\u003c/p>\n\u003cp>“There's something about having a place on the spectrum and feeling othered by the world, but still just being here no matter what, that really does … strengthen your skin.”\u003c/p>\n\u003cp>Dier says her uniquely wired brain and her gender fluidity are her greatest gifts because together they’re the roots of her resilience.\u003c/p>\n\u003cp>For many clinicians treating nonbinary or transgender people with autism, the cause behind their unique life experience is not crucial to providing excellent care.\u003c/p>\n\u003cp>“At the end of the day, it's really about helping people live self-actualized lives, where they're able to make choices and communicate those choices effectively,” said Janssen. “We need a health care system that is responsive to however those needs are communicated.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"A recent study suggests a strong overlap between autism and gender fluidity as researchers work to understand the connection and explore how society can be more accommodating to people who live at this intersection.","status":"publish","parent":0,"modified":1673642749,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":29,"wordCount":1167},"headData":{"title":"'Significant Overlap': Researchers Work to Understand Connection Between Autism and Gender Fluidity | KQED","description":"A recent study suggests a strong overlap between autism and gender fluidity as researchers work to understand the connection and explore how society can be more accommodating to people who live at this intersection.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"'Significant Overlap': Researchers Work to Understand Connection Between Autism and Gender Fluidity","datePublished":"2023-01-12T21:44:34.000Z","dateModified":"2023-01-13T20:45:49.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-4[…]/fd1da2dc-3c44-4254-badd-af88012d1c79/audio.mp3?download=true","excludeFromSiteSearch":"Include","articleAge":"0","path":"/news/11937857/significant-overlap-researchers-work-to-understand-connection-between-autism-and-gender-fluidity","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>As a toddler, Izzy Dier hated sundresses and loved Hot Wheels sneakers.\u003c/p>\n\u003cp>“I had a hunch, always, that I was way more masculine than my other female peers,” said Dier, who uses she/they pronouns.\u003c/p>\n\u003cp>As early as preschool, Dier started questioning her gender. When she was a teenager she began wondering if her testosterone was higher than average.\u003c/p>\n\u003cp>“I always had bushy facial hair and these little spots on my chin,” she said.\u003c/p>\n\u003cfigure id=\"attachment_11937863\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11937863\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-800x533.jpg\" alt=\"A transgender person with long dark hair and a shirt-dress smiles from their door at the camera.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61695_018_KQED_IzzyDier_12152022-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Izzy Dier poses for a portrait at their home in San Francisco on Dec. 15, 2022. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The 23-year-old now identifies as gender-fluid. She clutches her rainbow-colored purse as she leans back on a bench in Buena Vista Park. This spot under towering oak trees is Dier’s favorite place in San Francisco. Normally when she’s walking around or driving, she wears headphones.\u003c/p>\n\u003cp>“Otherwise my anxiety spikes and I just can't help but gasp at every little thing,” said Dier. “And just like jitter and jolt.”\u003c/p>\n\u003cp>When Dier was 3 years old, she was diagnosed with autism. Her preschool teachers noted that she was impulsive and hyperactive.\u003c/p>\n\u003cp>People who are transgender or nonbinary are more likely to be autistic. \u003ca href=\"https://www.nature.com/articles/s41467-020-17794-1\">One large study found that it’s three to six times more common than in the general population.\u003c/a> Researchers are working to understand the connection and exploring how society can be more accommodating to people who live at this intersection.\u003c/p>\n\u003cp>“We see that there is a pretty significant overlap in both directions,” said Dr. Aron Janssen, a psychiatrist at Northwestern University's Feinberg School of Medicine. In other words, it’s also more common for people who are autistic to question the sex they were assigned at birth.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'[A]utistic people may be less moored and less yoked to social expectations. This means that they also might be less yoked to social gender roles.'","name":"pullquote","attributes":{"named":{"align":"right","size":"medium","citation":"John Strang, director, Children's National Hospital's Gender and Autism Program","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>“Maybe there is something that is related to biology like hormonal differences,” said Dr. Lawrence Fung, a psychiatrist at Stanford University. “Females on the spectrum seem to have more testosterone, and masculine features on their faces. On the other hand, males on the autism spectrum, they have more feminine features.”\u003c/p>\n\u003cp>For example, clinicians have noticed that \u003ca href=\"https://pubmed.ncbi.nlm.nih.gov/22500012/939-y\">male patients with autism often have a high-pitched voice\u003c/a>, and research shows that \u003ca href=\"https://www.nature.com/articles/s41598-017-09939-y\">female patients with autism tend to have increased facial masculinity\u003c/a>.\u003c/p>\n\u003cp>Fung’s research also shows that the brains of autistic men and autistic women are different. The part of the brain responsible for sensory and motor functions may hold the key to this sex difference. Eventually neuroscience could help explain why people with autism are more likely to question their sex assigned at birth. There is a clear overlap between these groups, but a lot more research is needed to understand the roots of it.\u003c/p>\n\u003cp>Danielle Sullivan is curious about what scientists will discover about her lived experience.\u003c/p>\n\u003cp>“I didn't really like being a woman,” said Sullivan. “I didn't feel like a woman. I don't really feel like a man or male either, which is why I've sort of settled in the agender bucket.”\u003c/p>\n\u003cp>Sullivan is autistic. The 37-year-old counsels others on the spectrum in Lafayette, Colorado, as a neurodiversity coach. When she was diagnosed with autism five years ago, Sullivan felt relieved because it explained why she had always felt a little like an outsider.\u003c/p>\n\u003cp>“A lot of people seem to have a handbook that I had missed somehow for things like how to date, how to talk to people, how to dress,” she said.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'At the end of the day, it's really about helping people live self-actualized lives, where they're able to make choices and communicate those choices effectively. We need a health care system that is responsive to however those needs are communicated.'","name":"pullquote","attributes":{"named":{"align":"right","size":"medium","citation":"Dr. Aron Janssen, psychiatrist, Northwestern University's Feinberg School of Medicine","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>Today Sullivan is comfortable in her own skin as an agender or nonbinary person with autism, but her childhood was challenging.\u003c/p>\n\u003cp>“I felt like I was failing constantly and like I just couldn't do it. There was just some kind of internal brokenness about me,” she said.\u003c/p>\n\u003cp>Sullivan wishes society was more accepting and more accommodating of people with autism. She has two children who are both on the spectrum.\u003c/p>\n\u003cp>“One of their quote-unquote behaviors: They're yelling, they're shaking their hands, they're rocking. It's like, ‘They're fine. They're happy. Leave ‘em alone.’ I just wish there was less judgment around that and more curiosity and interest,” she said.\u003c/p>\n\u003cp>She says the autistic brain is not a problem or something to be feared. In many ways, she says, her mind is more open and less hindered by societal norms and expectations.\u003c/p>\n\u003cp>Many experts say the psychology that Sullivan is pointing to may be driving the overlap between autism and gender identity.\u003c/p>\n\u003cp>“Autistic people take in and process social information in a somewhat different way than neurotypical folks,” said John Strang, director of the Gender and Autism Program at Children's National Hospital in Washington, D.C. “And because autistic people may be less moored and less yoked to social expectations, this means that they also might be less yoked to social gender roles.”\u003c/p>\n\u003cp>Janssen agrees, saying, “Some of the strengths that many people with autism have is looking at systems that are done because we've done them that way forever and calling it out as BS. People with autism can easily say, ‘This doesn't make sense to me. This isn't my experience.’”\u003c/p>\n\u003cfigure id=\"attachment_11937868\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-11937868 size-medium\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-800x533.jpg\" alt=\"A white person with long dark hair, wearing a sleeveless top and with tattoos on their right forearm, sits on a bed amid stuffed animals and colorful cushions, playing guitar.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/01/RS61684_001_KQED_IzzyDier_12152022-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Izzy Dier plays guitar at their home in San Francisco on Dec. 15, 2022. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>That is definitely true for Izzy Dier back in San Francisco sitting at Buena Vista Park.\u003c/p>\n\u003cp>“There's something about having a place on the spectrum and feeling othered by the world, but still just being here no matter what, that really does … strengthen your skin.”\u003c/p>\n\u003cp>Dier says her uniquely wired brain and her gender fluidity are her greatest gifts because together they’re the roots of her resilience.\u003c/p>\n\u003cp>For many clinicians treating nonbinary or transgender people with autism, the cause behind their unique life experience is not crucial to providing excellent care.\u003c/p>\n\u003cp>“At the end of the day, it's really about helping people live self-actualized lives, where they're able to make choices and communicate those choices effectively,” said Janssen. “We need a health care system that is responsive to however those needs are communicated.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11937857/significant-overlap-researchers-work-to-understand-connection-between-autism-and-gender-fluidity","authors":["11229"],"categories":["news_8","news_356"],"tags":["news_32279","news_980","news_27626","news_32281","news_32280","news_32278","news_24732","news_2486"],"featImg":"news_11937870","label":"news"},"news_11909793":{"type":"posts","id":"news_11909793","meta":{"index":"posts_1591205157","site":"news","id":"11909793","score":null,"sort":[1648742458000]},"guestAuthors":[],"slug":"when-parents-melt-down-this-school-hires-a-coach-to-help-them","title":"When Parents Melt Down, This School Hires a Coach to Help Them","publishDate":1648742458,"format":"standard","headTitle":"KQED News","labelTerm":{"site":"news"},"content":"\u003cp>\u003cspan style=\"font-weight: 400\">Keana Reece always makes sure she is last in line when she drops off her 4-year-old son, Tyran, at preschool, so she can minimize the trauma of handing him off to his teacher. As she leads him in by the hand, she gives him the pep talk.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“Remember: My name is Tyran. I am loved. I am worthy. And I'm highly intelligent. Got it?”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Tyran has nonverbal autism, so Reece has come to intuit his every gesture and sound. \u003c/span>\u003cspan style=\"font-weight: 400\">Early signs of autism can appear in children during their first two years of life, with\u003c/span>\u003cspan style=\"font-weight: 400\">\u003ca href=\"https://www.nidcd.nih.gov/health/autism-spectrum-disorder-communication-problems-children\"> some children becoming verbal as they grow older\u003c/a>. Reece is wearing her “I Love Someone With Autism” T-shirt as she walks up to the classroom door. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“You know the drill. Big boys on one side of the door, mommies on the other,” Reece tells him. Tyran starts to cry as he’s led in, and Reece turns away. \"This is the hardest part of my day,\" she admits.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece brings her son here in the afternoons to a special education preschool at the Hayward Unified School District’s Student Information and Assessment Center (SIAC). But she often feels like it's hard to get the school to respond to what she knows is best for her son. \u003c/span>[pullquote size=\"medium\" align=\"right\" citation=\"Keana Reece, parent\"]'It's a ton of work, but it's either do the work or let him fall under the bridge. It's the educational system.'[/pullquote]\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“I talk to the teacher maybe two minutes a week. They take him in. They bring him out. I don't know what he's learning. I don't know anything,” Reece said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When the Hayward school district seemed to give her the runaround on buying a new electronic PECS board — a speech tablet that would make it easier for Tyran to communicate — she saved up and sacrificed to buy one herself. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When she learned the preschool wouldn’t do inclusion, where Tyran could be with children who did not have disabilities, she began looking for one that would. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“It's disheartening because I know who he is, I know what he's capable of. When I look at him, I see greatness,” she said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“It's a ton of work, but it's either do the work or let him fall under the bridge. It's the educational system. I just don't know how to navigate the system, and it's overwhelming.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">That kind of stress can take a toll.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“I was so involved in Tyran and making sure our time was together and making sure the house was together, making sure my husband was together. That Keana was falling by the wayside, and some days it was four or five o'clock and I realized I hadn't eaten anything all day,” she said.\u003c/span>\u003cb> \u003c/b>\u003c/p>\n\u003cfigure id=\"attachment_11909837\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-scaled.jpg\">\u003cimg class=\"size-medium wp-image-11909837\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-800x600.jpg\" alt=\"Four children are climbing on a playground structure outside.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-1536x1152.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-2048x1536.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-1920x1440.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Kids play at The Primary School East Bay on Oct. 13, 2021. Children with health care needs are seen by Kaiser medical staff who coordinate solutions with teachers and parents. \u003ccite>(Julia McEvoy/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cspan style=\"font-weight: 400\">Parenting during the pandemic has been rough on a lot of families. According to research done by \u003c/span>\u003ca href=\"https://www.frontiersin.org/articles/10.3389/fpsyt.2021.626456/full\">\u003cspan style=\"font-weight: 400\">Frontiers in Psychiatry\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">, parents reported increased stress due to difficulty in parenting, with 1 in 5 reporting high stress over the course of the pandemic. Children's resulting social and emotional issues have been showing up inside school classrooms. But while \u003ca class=\"c-link\" href=\"https://www.kqed.org/news/11908813/california-to-funnel-billions-into-mental-health-resources-for-young-people-but-will-it-come-soon-enough\" target=\"_blank\" rel=\"noopener noreferrer\" data-stringify-link=\"https://www.kqed.org/news/11908813/california-to-funnel-billions-into-mental-health-resources-for-young-people-but-will-it-come-soon-enough\" data-sk=\"tooltip_parent\" data-remove-tab-index=\"true\">billions in pandemic tax dollars\u003c/a> have been allocated to help schools with kids’ mental health, little has been done for parents.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">It took Reece finding a new preschool to get the help she needed.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece has a trusting relationship with her pediatrician at the Kaiser Hayward-Sleepy Hollow medical clinic. So when she got an email from him about a new public preschool that Kaiser physicians were helping design, she was intrigued.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">What she found was a place where she would get to be part of Tyran’s education, and where school staff would treat her as an equal partner. They would also give her a personal coach who would check in with her biweekly.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“If there's something at school that I just can't talk to the teacher about or I don't know who to go to, I can call Diane,” said Reece. “‘Hey, this is my problem, what do I do?’ And if it's something that I just can't bring up, she'll say, ‘I'll talk to them.’ So by the time they come to me, the issue was already brought out and the awkwardness of the situation has been taken away. It is pretty amazing.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The publicly funded preschool, called The Primary School East Bay, costs Reece nothing. The school prioritizes families who qualify based on income and enrolls them on a rolling basis when spots are available. Reece can also still keep Tyran in the traditional public school special education class in the afternoons, giving her full-day preschool. This allows her to keep her payroll job at the city of Oakland, though it means shuttling Tyran between schools during her lunch hour.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There was something else about this new school that appealed to her: It would have Kaiser medical staff on campus twice a week.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Inside the school, Dr. Paul Espinas points out two medical assistants and a nurse, all Kaiser staff, working outside at tables in the school’s grassy playground. Espinas is a Kaiser pediatrician and medical director at the preschool, which means he meets weekly with school staff to coordinate care for kids and their families.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“We should honor the work that school nurses have done in the area. We should honor the work that our school-based health clinics have done. But I feel like a lot of families are still trapped, trapped ping-ponging between different organizations within their community,” said Espinas.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Espinas had seen parents struggling to navigate the health care system, describing times when he’d screen a child for a developmental issue and make a referral, and the parent wouldn’t follow up.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“And if they don't make it, and I see them a year later still needing speech therapy or the speech, the speech problems are worse. Like, I feel like that's a systems fail on our part,” said Espinas.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Espinas says the clinic’s doctors work directly with teachers at the school to help parents schedule appointments, make sure families bring kids in for vaccines, or get the asthma medication they need. He said the teachers’ role in helping reach out to parents is pivotal, and called the intensive team effort unique.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“If we get this model right, other systems hopefully will replicate it. Other Kaisers, other big health systems,” said Espinas.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece says the coordination takes stress off her. “I don't have a medical background and I don't have an educational background, either,” she said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When teachers at Hayward’s district-run preschool sends her to Tyran’s pediatrician to get more information about what Tyran needs, by the time she gets back to the school with the information, she has it confused. She said, \"I have answers, but I'm sure they're not as accurate as my Kaiser physician saying, 'I'll let the school know.'\"\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Because Kaiser staff communicate directly with The Primary School East Bay, now when Reece shows up at the school, teachers already have information her doctor has sent them, and she can sit down with staff to discuss next steps to best assist Tyran.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Teachers are also benefiting. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“Remember last year during COVID? I didn't necessarily have to come up with a health plan. Our on-site doctor did,” explained Denise Laney, lead teacher at the school.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“As a teacher, I have had students come into my classroom with not the appropriate attire for the weather. I've had students that come in complaining of hunger. I've had families say, 'Hey, I know that my student needs glasses, but I can't afford it.' I know that someone's been complaining, their tooth hurting, but I'm not sure what to do, and we have resources for all of that.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Having health care staff on site also allows these early childhood educators to remain focused on teaching and creating a respectful way of including and engaging parents in how to best support their kids.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“So that we really are able to learn to not just assume things, but to ask a lot of open-ended questions,” said Natasha Hall-Sevilla, manager of parent wellness coaching. “To really learn and understand what our families are going through so that we can change ourselves, and change how we show up for families.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">All this can mean extra hours for teachers. But Laney says teachers like her are getting paid more than the norm for early childhood educators who have long complained about being undervalued. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There are only 48 children enrolled in The Primary School East Bay — three classrooms each with two teachers and a total staff of 15. So far, the estimated cost of the state-funded preschool is about $20,000 per child, with some of that coming from philanthropy.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">While there are other schools nationwide educators cite as the models they used to develop The Primary School East Bay, including the privately funded The Primary School in East Palo Alto, the East Bay school operates using state tax dollars. As it adds grades, it hopes to prove this kind of intensive wraparound support for families with public funding.\u003c/span>\u003c/p>\n\u003cfigure id=\"attachment_11909836\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-scaled.jpg\">\u003cimg class=\"size-medium wp-image-11909836\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-800x600.jpg\" alt=\"Children and adults sit on the floor in a classroom.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-1536x1152.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-2048x1536.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-1920x1440.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Children gather around an instructor while Tyran is cradled by his applied behavior analysis therapist, to be part of a regular preschool class at The Primary School East Bay. \u003ccite>(Julia McEvoy/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cspan style=\"font-weight: 400\">California is investing a historic $3 billion over the next five years to expand the community schools model. The goal is to make high-poverty schools into one-stop shops, serving students' social and emotional needs and, by extension, the needs of their families. The state is investing an additional $1 billion to help schools provide mental health services through partnerships with community health organizations. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Courtney Garcia oversees both The Primary School locations, and says public systems are not currently set up for different agencies to coordinate seamlessly and in a family-centered way, which complicates caregivers’ lives.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“Parents really express, many of them, isolation, overwhelm and so many stressors that can make it really difficult for them to reach out and seek help, can make it difficult for them to overcome barriers to accessing resources that are there to serve their child and to serve their family in many cases,” Garcia said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Garcia points out that for children and families in Alameda who qualify for Medi-Cal, only 43% of children are having their annual preventive checkups. At The Primary School East Bay, 100% of students have had those checkups in the past year.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Kaiser Permanente calls this integrated care between its medical staff and the school staff promising, though it wouldn’t say what share of the costs it was carrying. If Kaiser Permanente, one of California’s largest health care providers, were to supply medical staff to public schools, it could be a game changer.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">This kind of coordination between her local health clinic and her school does take some stress out of Reece’s life, but not all of it. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When things get overwhelming, she turns to the parent coach hired by the school to focus on her well-being. The coach works with 40 to 50 parents. Hall-Sevilla, the parent coach coordinator, says coaches work on parent wellness, nutrition and stress management.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“And I'll say, 'Oh, my gosh, it sounds like you are really stressed out. I can hear and sense the stress in your voice. Would you be OK to take a breath with me?' And so we stop and we take a deep breath, and then they're able to continue on,” she said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Coaches also guide parents and guardians toward reaching their own goals, checking in every two weeks. Reece and other parents also are part of a monthly wellness group of parents who support one another.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Before they found The Primary School East Bay, Reece and her husband talked about her homeschooling Tyran, even though it would have meant giving up her job. They both decided Tyran’s needs have to come first.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“In my mind now, I don’t care if he's autistic, he's still going to grow up, he's still going to get married, he's still going to have kids … he's still, you know, he's still going to be a force to reckon with in this world,” she said. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece has worked hard to get Tyran into the right preschool where she believes he can thrive. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Now she just has to find the right place for him to go to kindergarten.\u003c/span>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"A publicly funded preschool called The Primary School East Bay offers services from Kaiser medical staff for children, as well as coaches to guide parents and guardians toward reaching their own goals.","status":"publish","parent":0,"modified":1648835670,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":51,"wordCount":2234},"headData":{"title":"When Parents Melt Down, This School Hires a Coach to Help Them | KQED","description":"A publicly funded preschool called The Primary School East Bay offers services from Kaiser medical staff for children, as well as coaches to guide parents and guardians toward reaching their own goals.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"When Parents Melt Down, This School Hires a Coach to Help Them","datePublished":"2022-03-31T16:00:58.000Z","dateModified":"2022-04-01T17:54:30.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11909793 https://ww2.kqed.org/news/?p=11909793","disqusUrl":"https://ww2.kqed.org/news/2022/03/31/when-parents-melt-down-this-school-hires-a-coach-to-help-them/","disqusTitle":"When Parents Melt Down, This School Hires a Coach to Help Them","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-4[…]f-aaef00f5a073/901fa651-fd7e-47cb-91c4-ae690134ad47/audio.mp3","excludeFromSiteSearch":"Include","path":"/news/11909793/when-parents-melt-down-this-school-hires-a-coach-to-help-them","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cspan style=\"font-weight: 400\">Keana Reece always makes sure she is last in line when she drops off her 4-year-old son, Tyran, at preschool, so she can minimize the trauma of handing him off to his teacher. As she leads him in by the hand, she gives him the pep talk.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“Remember: My name is Tyran. I am loved. I am worthy. And I'm highly intelligent. Got it?”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Tyran has nonverbal autism, so Reece has come to intuit his every gesture and sound. \u003c/span>\u003cspan style=\"font-weight: 400\">Early signs of autism can appear in children during their first two years of life, with\u003c/span>\u003cspan style=\"font-weight: 400\">\u003ca href=\"https://www.nidcd.nih.gov/health/autism-spectrum-disorder-communication-problems-children\"> some children becoming verbal as they grow older\u003c/a>. Reece is wearing her “I Love Someone With Autism” T-shirt as she walks up to the classroom door. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“You know the drill. Big boys on one side of the door, mommies on the other,” Reece tells him. Tyran starts to cry as he’s led in, and Reece turns away. \"This is the hardest part of my day,\" she admits.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece brings her son here in the afternoons to a special education preschool at the Hayward Unified School District’s Student Information and Assessment Center (SIAC). But she often feels like it's hard to get the school to respond to what she knows is best for her son. \u003c/span>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'It's a ton of work, but it's either do the work or let him fall under the bridge. It's the educational system.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Keana Reece, parent","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“I talk to the teacher maybe two minutes a week. They take him in. They bring him out. I don't know what he's learning. I don't know anything,” Reece said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When the Hayward school district seemed to give her the runaround on buying a new electronic PECS board — a speech tablet that would make it easier for Tyran to communicate — she saved up and sacrificed to buy one herself. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When she learned the preschool wouldn’t do inclusion, where Tyran could be with children who did not have disabilities, she began looking for one that would. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“It's disheartening because I know who he is, I know what he's capable of. When I look at him, I see greatness,” she said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“It's a ton of work, but it's either do the work or let him fall under the bridge. It's the educational system. I just don't know how to navigate the system, and it's overwhelming.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">That kind of stress can take a toll.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“I was so involved in Tyran and making sure our time was together and making sure the house was together, making sure my husband was together. That Keana was falling by the wayside, and some days it was four or five o'clock and I realized I hadn't eaten anything all day,” she said.\u003c/span>\u003cb> \u003c/b>\u003c/p>\n\u003cfigure id=\"attachment_11909837\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-scaled.jpg\">\u003cimg class=\"size-medium wp-image-11909837\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-800x600.jpg\" alt=\"Four children are climbing on a playground structure outside.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-1536x1152.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-2048x1536.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6352-1920x1440.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Kids play at The Primary School East Bay on Oct. 13, 2021. Children with health care needs are seen by Kaiser medical staff who coordinate solutions with teachers and parents. \u003ccite>(Julia McEvoy/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cspan style=\"font-weight: 400\">Parenting during the pandemic has been rough on a lot of families. According to research done by \u003c/span>\u003ca href=\"https://www.frontiersin.org/articles/10.3389/fpsyt.2021.626456/full\">\u003cspan style=\"font-weight: 400\">Frontiers in Psychiatry\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">, parents reported increased stress due to difficulty in parenting, with 1 in 5 reporting high stress over the course of the pandemic. Children's resulting social and emotional issues have been showing up inside school classrooms. But while \u003ca class=\"c-link\" href=\"https://www.kqed.org/news/11908813/california-to-funnel-billions-into-mental-health-resources-for-young-people-but-will-it-come-soon-enough\" target=\"_blank\" rel=\"noopener noreferrer\" data-stringify-link=\"https://www.kqed.org/news/11908813/california-to-funnel-billions-into-mental-health-resources-for-young-people-but-will-it-come-soon-enough\" data-sk=\"tooltip_parent\" data-remove-tab-index=\"true\">billions in pandemic tax dollars\u003c/a> have been allocated to help schools with kids’ mental health, little has been done for parents.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">It took Reece finding a new preschool to get the help she needed.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece has a trusting relationship with her pediatrician at the Kaiser Hayward-Sleepy Hollow medical clinic. So when she got an email from him about a new public preschool that Kaiser physicians were helping design, she was intrigued.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">What she found was a place where she would get to be part of Tyran’s education, and where school staff would treat her as an equal partner. They would also give her a personal coach who would check in with her biweekly.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“If there's something at school that I just can't talk to the teacher about or I don't know who to go to, I can call Diane,” said Reece. “‘Hey, this is my problem, what do I do?’ And if it's something that I just can't bring up, she'll say, ‘I'll talk to them.’ So by the time they come to me, the issue was already brought out and the awkwardness of the situation has been taken away. It is pretty amazing.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The publicly funded preschool, called The Primary School East Bay, costs Reece nothing. The school prioritizes families who qualify based on income and enrolls them on a rolling basis when spots are available. Reece can also still keep Tyran in the traditional public school special education class in the afternoons, giving her full-day preschool. This allows her to keep her payroll job at the city of Oakland, though it means shuttling Tyran between schools during her lunch hour.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There was something else about this new school that appealed to her: It would have Kaiser medical staff on campus twice a week.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Inside the school, Dr. Paul Espinas points out two medical assistants and a nurse, all Kaiser staff, working outside at tables in the school’s grassy playground. Espinas is a Kaiser pediatrician and medical director at the preschool, which means he meets weekly with school staff to coordinate care for kids and their families.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“We should honor the work that school nurses have done in the area. We should honor the work that our school-based health clinics have done. But I feel like a lot of families are still trapped, trapped ping-ponging between different organizations within their community,” said Espinas.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Espinas had seen parents struggling to navigate the health care system, describing times when he’d screen a child for a developmental issue and make a referral, and the parent wouldn’t follow up.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“And if they don't make it, and I see them a year later still needing speech therapy or the speech, the speech problems are worse. Like, I feel like that's a systems fail on our part,” said Espinas.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Espinas says the clinic’s doctors work directly with teachers at the school to help parents schedule appointments, make sure families bring kids in for vaccines, or get the asthma medication they need. He said the teachers’ role in helping reach out to parents is pivotal, and called the intensive team effort unique.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“If we get this model right, other systems hopefully will replicate it. Other Kaisers, other big health systems,” said Espinas.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece says the coordination takes stress off her. “I don't have a medical background and I don't have an educational background, either,” she said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When teachers at Hayward’s district-run preschool sends her to Tyran’s pediatrician to get more information about what Tyran needs, by the time she gets back to the school with the information, she has it confused. She said, \"I have answers, but I'm sure they're not as accurate as my Kaiser physician saying, 'I'll let the school know.'\"\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Because Kaiser staff communicate directly with The Primary School East Bay, now when Reece shows up at the school, teachers already have information her doctor has sent them, and she can sit down with staff to discuss next steps to best assist Tyran.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Teachers are also benefiting. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“Remember last year during COVID? I didn't necessarily have to come up with a health plan. Our on-site doctor did,” explained Denise Laney, lead teacher at the school.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“As a teacher, I have had students come into my classroom with not the appropriate attire for the weather. I've had students that come in complaining of hunger. I've had families say, 'Hey, I know that my student needs glasses, but I can't afford it.' I know that someone's been complaining, their tooth hurting, but I'm not sure what to do, and we have resources for all of that.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Having health care staff on site also allows these early childhood educators to remain focused on teaching and creating a respectful way of including and engaging parents in how to best support their kids.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“So that we really are able to learn to not just assume things, but to ask a lot of open-ended questions,” said Natasha Hall-Sevilla, manager of parent wellness coaching. “To really learn and understand what our families are going through so that we can change ourselves, and change how we show up for families.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">All this can mean extra hours for teachers. But Laney says teachers like her are getting paid more than the norm for early childhood educators who have long complained about being undervalued. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There are only 48 children enrolled in The Primary School East Bay — three classrooms each with two teachers and a total staff of 15. So far, the estimated cost of the state-funded preschool is about $20,000 per child, with some of that coming from philanthropy.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">While there are other schools nationwide educators cite as the models they used to develop The Primary School East Bay, including the privately funded The Primary School in East Palo Alto, the East Bay school operates using state tax dollars. As it adds grades, it hopes to prove this kind of intensive wraparound support for families with public funding.\u003c/span>\u003c/p>\n\u003cfigure id=\"attachment_11909836\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-scaled.jpg\">\u003cimg class=\"size-medium wp-image-11909836\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-800x600.jpg\" alt=\"Children and adults sit on the floor in a classroom.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-1536x1152.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-2048x1536.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2022/03/IMG_6346-1920x1440.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Children gather around an instructor while Tyran is cradled by his applied behavior analysis therapist, to be part of a regular preschool class at The Primary School East Bay. \u003ccite>(Julia McEvoy/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cspan style=\"font-weight: 400\">California is investing a historic $3 billion over the next five years to expand the community schools model. The goal is to make high-poverty schools into one-stop shops, serving students' social and emotional needs and, by extension, the needs of their families. The state is investing an additional $1 billion to help schools provide mental health services through partnerships with community health organizations. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Courtney Garcia oversees both The Primary School locations, and says public systems are not currently set up for different agencies to coordinate seamlessly and in a family-centered way, which complicates caregivers’ lives.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“Parents really express, many of them, isolation, overwhelm and so many stressors that can make it really difficult for them to reach out and seek help, can make it difficult for them to overcome barriers to accessing resources that are there to serve their child and to serve their family in many cases,” Garcia said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Garcia points out that for children and families in Alameda who qualify for Medi-Cal, only 43% of children are having their annual preventive checkups. At The Primary School East Bay, 100% of students have had those checkups in the past year.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Kaiser Permanente calls this integrated care between its medical staff and the school staff promising, though it wouldn’t say what share of the costs it was carrying. If Kaiser Permanente, one of California’s largest health care providers, were to supply medical staff to public schools, it could be a game changer.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">This kind of coordination between her local health clinic and her school does take some stress out of Reece’s life, but not all of it. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">When things get overwhelming, she turns to the parent coach hired by the school to focus on her well-being. The coach works with 40 to 50 parents. Hall-Sevilla, the parent coach coordinator, says coaches work on parent wellness, nutrition and stress management.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“And I'll say, 'Oh, my gosh, it sounds like you are really stressed out. I can hear and sense the stress in your voice. Would you be OK to take a breath with me?' And so we stop and we take a deep breath, and then they're able to continue on,” she said.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Coaches also guide parents and guardians toward reaching their own goals, checking in every two weeks. Reece and other parents also are part of a monthly wellness group of parents who support one another.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Before they found The Primary School East Bay, Reece and her husband talked about her homeschooling Tyran, even though it would have meant giving up her job. They both decided Tyran’s needs have to come first.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“In my mind now, I don’t care if he's autistic, he's still going to grow up, he's still going to get married, he's still going to have kids … he's still, you know, he's still going to be a force to reckon with in this world,” she said. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Reece has worked hard to get Tyran into the right preschool where she believes he can thrive. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Now she just has to find the right place for him to go to kindergarten.\u003c/span>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11909793/when-parents-melt-down-this-school-hires-a-coach-to-help-them","authors":["231"],"categories":["news_18540","news_8"],"tags":["news_980","news_30894","news_27626","news_421","news_30893","news_28373","news_17763","news_24739"],"featImg":"news_11909838","label":"news"},"news_11897959":{"type":"posts","id":"news_11897959","meta":{"index":"posts_1591205157","site":"news","id":"11897959","score":null,"sort":[1638660881000]},"guestAuthors":[],"slug":"half-moon-bays-big-wave-community-welcomes-adults-with-intellectual-and-developmental-disabilities","title":"Half Moon Bay's 'Big Wave' Community Welcomes Adults With Intellectual and Developmental Disabilities","publishDate":1638660881,"format":"standard","headTitle":"The California Report Magazine | KQED News","labelTerm":{"term":26731,"site":"news"},"content":"\u003cp>For parents of children with intellectual and developmental disabilities, the fear of dying with no solid plan in place for their children's care runs deep.\u003c/p>\n\u003cp>“There's a clawing specter — that haunting, grinding specter — in your mind: What's going to happen when you pass?” said Jeff Peck, founder and CEO of the \u003ca href=\"https://www.bigwaveproject.org/farm/\" target=\"_blank\" rel=\"noopener noreferrer\">Big Wave Project\u003c/a>, a community led by parents for their adult children in Half Moon Bay.[pullquote size=\"medium\" align=\"right\" citation=\"Michelle Garcia Winner, speech language pathologist\"]'Humans are born to contribute to something greater than themselves. If a person only has a five-minute attention span and they can help for five minutes, that's awesome, right? Because they feel like they're part of something.'[/pullquote]\u003c/p>\n\u003cp>It all began two decades ago, with Peck and his son starting Special Olympics basketball teams in this small coastal community a half hour's drive south of San Francisco. Peck's daughter, Elizabeth, has emotional and intellectual disabilities.\u003c/p>\n\u003cp>Standing over six feet tall, silver hair under his baseball cap, Peck has an easy but direct way of coaching. On a foggy Saturday on a field in Half Moon Bay, Peck instructs a small group of adults huddled around him to protect the ball. Then he tells them, “When I say rebound … ,” and everyone — including his daughter — screams, “Rebound!” at the tops of their lungs.\u003c/p>\n\u003cp>The idea with these teams was for everyone to get a chance to hold the ball, to pass the ball, to aim for the backboard and, generally, have a good time with each other. The Pecks started with seven basketball players; now there are around 60, on four teams.\u003c/p>\n\u003cfigure id=\"attachment_11898281\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898281\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-scaled.jpeg\" alt=\"Two young men play basketball on a field on a foggy day.\" width=\"2560\" height=\"1834\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-800x573.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-1020x731.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-160x115.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-1536x1100.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-2048x1467.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-1920x1376.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Daniel (with the ball) and Matthew Hearn play basketball on a field at Big Wave. \u003ccite>(KQED/Rachael Myrow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“They started when they were 8. Some of them are 30. Some of them started when they were 20. Now they're in their 40s, but they keep coming back because that's the community which they created,” Peck said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>As families sat in the bleachers over the years, the parents began to wonder whether these friendships could develop into something more permanent, a self-sustaining community of some kind.\u003c/p>\n\u003cp>“We have all different levels of ability on the basketball court, and the higher, better players would help the lesser players. That's what this population is,\" said Big Wave Project board member \u003ca href=\"https://www.bigwaveproject.org/kim-gainza/\">Kim Gainza\u003c/a>, mother of Emmy, who will live at Big Wave. \"They support each other and help each other, and if somebody makes a basket, everybody in the gym is cheering,”\u003c/p>\n\u003cp>Gainza summarized those conversations about the future:\u003c/p>\n\u003cp>\"'Well, what's your plan for Joey when you're no longer here?’\u003c/p>\n\u003cp>‘Well, I don't know.’\u003c/p>\n\u003cp>‘What's your plan for Emmy when you're no longer here?’”\u003c/p>\n\u003ch2>An idea takes root\u003c/h2>\n\u003cp>In 1999, Peck bought a windy, grassy plot of land, about 20 acres, across from the Half Moon Bay Airport. At the time, he was mainly interested in providing a comfortable place for sports, with a little farming on the side.\u003c/p>\n\u003cp>There are rows of crops here: strawberries, peas, lettuce, squash and lavender. Colorful chickens go about their business in a large coop. Big Wave sells fresh eggs, mainly to their families. To raise money, they also sell baskets of goodies from their garden — lavender products, flowers and eggs every second and fourth Saturday of the month.\u003c/p>\n\u003cfigure id=\"attachment_11898282\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898282\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-scaled.jpeg\" alt=\"A bed of strawberry plants grows.\" width=\"2560\" height=\"1919\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-800x600.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-1020x765.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-160x120.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-1536x1151.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-2048x1535.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-1920x1439.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Big Wave sells produce like strawberries, peas, lettuce, squash and lavender. \u003ccite>(KQED/Rachael Myrow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Over the years, the parents' ambition for the place grew. Today, it includes plans for apartments, a community café staffed by residents, and office space to rent out for income. The idea is to provide a place where their adult children and other residents who join will soon be able to live independently, in a community of their peers.\u003c/p>\n\u003cp>“You want your child to be safe, but you want your child to have opportunity, a community. You want them to have a full life,” said Peck.\u003c/p>\n\u003cp>Creating an intentional community for adults with intellectual and developmental disabilities is no small feat. Peck did well for himself as a contractor, which allowed him to buy this land 20 years ago. But it’s taken numerous hearings, environmental reviews and permit applications to get to the point where Big Wave could break ground.\u003c/p>\n\u003cp>From the beginning, there were vociferous, local objections to the development. \u003ca href=\"https://www.smharbor.com/commissioner-sabrina-brennan\" target=\"_blank\" rel=\"noopener noreferrer\" data-stringify-link=\"https://www.smharbor.com/commissioner-sabrina-brennan\" data-sk=\"tooltip_parent\">Sabrina Brennan\u003c/a>, a former San Mateo County harbor commissioner who opposed the project, said they ran the gamut\u003cstrong data-stringify-type=\"bold\">: \u003c/strong>from concerns about the property being in a \u003ca href=\"///Users/pollystryker/Downloads/Skelly%20BigWaveWelness%202021%2010.18.21.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">tsunami inundation zone\u003c/a> (mitigated in consultation with the county) and too close to \u003ca href=\"http://fitzgeraldreserve.org/visit\">Fitzgerald Marine Reserve\u003c/a>, to concerns that Big Wave’s residents would be too far away from social services.\u003c/p>\n\u003cp>Another major point of contention was Big Wave’s original proposal to build a large office park nearby, the proceeds of which would support the nonprofit, according to Gainza. Big Wave eventually dropped those plans to get approval from the \u003ca href=\"https://documents.coastal.ca.gov/reports/2018/7/th6/th6-7-2018-report.pdf\" target=\"_blank\" rel=\"noopener noreferrer\" data-stringify-link=\"https://documents.coastal.ca.gov/reports/2018/7/th6/th6-7-2018-report.pdf\" data-sk=\"tooltip_parent\">California Coastal Commission\u003c/a> and San Mateo County for the mixed-use development now under construction, with permits approved in 2018 and 2020. Loans, donations and grants will cover costs instead. Concerns raised in a lawsuit by a local sanitary district were settled in 2009.\u003cbr>\n\u003cstrong data-stringify-type=\"bold\"> \u003c/strong>\u003cbr>\nIn a statement, Big Wave spokesperson Sarah Sherwood wrote that Big Wave “has been through years of examination and regulation, including the completion of an Environmental Impact Statement and full approval and permits from the California Coastal Commission (2015), which Big Wave supports, as it advocates for adults with disabilities, the environment and the natural beauty of the Coast.” She added, “100 percent of all profits from farm sales, and any mom and pop businesses on the property go directly to our nonprofit, to serve the needs of adults with developmental disabilities, such as (autism), Down’s (syndrome) and brain injuries.”\u003c/p>\n\u003cp>The green light finally came during the pandemic. Now 68, Peck knows he has a limited window of time to establish something financially sustainable that can outlast him and the other original parents. “All of the revenue from these commercial assets [will] go to keep the operating costs low,” said Peck.\u003c/p>\n\u003cp>A core group of families paid about $60,000 each for their adult child to have a place at Big Wave, although costs have risen with construction prices and county requirements, like a traffic light.\u003c/p>\n\u003cp>In addition to the 57 apartments where Elizabeth and other adults with intellectual and developmental disabilities will live, there will be office space for rent, with some tenants already slated, like a martial arts academy, a florist, a culinary academy and a public café. The café will be overseen by Julie and Paul Shenkman, who run the popular \u003ca href=\"https://www.samschowderhouse.com\" target=\"_blank\" rel=\"noopener noreferrer\">Sam’s Chowder House\u003c/a> nearby. They’re Big Wave parents, too, and their child Sam will live at Big Wave.\u003c/p>\n\u003cp>“It will be a breakfast-lunch café. It’ll be muffins and coffee and sandwiches and soups. It will provide a place for the kids to have a job,” Julie Shenkman said.\u003c/p>\n\u003cp>The model is kind of like a co-op, or an intentional community or commune, with a board — including residents — to run it all. Peck knows this is a big, expensive experiment.\u003c/p>\n\u003cp>“This is my life's work,” he said. “When you have children that look at the world differently, you get an insight into life and death and history and spirituality and wisdom that you wouldn't get otherwise.”\u003c/p>\n\u003ch2>\u003cb>Support for kids, but not for adults \u003c/b>\u003c/h2>\n\u003cp>California's \u003ca href=\"https://www.dds.ca.gov/RC/\" target=\"_blank\" rel=\"noopener noreferrer\">Department of Developmental Services\u003c/a> serves more than 350,000 people with intellectual and developmental disabilities. It’s a sizable — and vulnerable — population.\u003c/p>\n\u003cp>This state is more generous than many others. But still, parents have to know how to work the system, according to Michelle Garcia Winner, a San Jos\u003cspan style=\"font-weight: 400\">é\u003c/span>-based speech language pathologist who’s worked with people on the autism spectrum for years.\u003c/p>\n\u003cp>She said there are plenty of programs for \u003cem>kids\u003c/em> with intellectual and developmental disabilities (IDDs), but fewer that are available for adults.\u003c/p>\n\u003cp>“I don't ever see our government being able to manage the needs of adults in a meaningful way,” she said.\u003c/p>\n\u003cp>Garcia Winner said overcoming isolation and finding purpose is very important for the IDD community, just as it is for the rest of us. “Humans are born to contribute to something greater than themselves. If a person only has a five-minute attention span and they can help for five minutes, that's awesome, right? Because they feel like they're part of something.”\u003c/p>\n\u003cp>Dr. Lawrence Fung, an assistant professor of psychiatry and behavioral sciences at Stanford, is the proud father of a neurodiverse teenager. He directs the \u003ca href=\"https://med.stanford.edu/neurodiversity.html\" target=\"_blank\" rel=\"noopener noreferrer\">Stanford Neurodiversity Project\u003c/a>, which runs several programs including a specialized employment program for people with autism called \u003ca href=\"https://med.stanford.edu/neurodiversity/NaW.html\" target=\"_blank\" rel=\"noopener noreferrer\">Neurodiversity at Work\u003c/a>. It pairs people on the autism spectrum with jobs well-suited to their skill sets.\u003c/p>\n\u003cp>\"A lot of neurodiverse people have significant strengths that can contribute much to society, if they are discovered,” Fung said. He added that it's important for people like his son to be able to find work and build a strong sense of identity.\u003c/p>\n\u003ch2>A tale of two brothers\u003c/h2>\n\u003cfigure id=\"attachment_11898285\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898285\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-scaled.jpeg\" alt=\"Two boys grin as they show off toy airplanes in an outdoor setting.\" width=\"2560\" height=\"1891\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-800x591.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-1020x754.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-160x118.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-1536x1135.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-2048x1513.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-1920x1419.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Matthew (left) and Daniel Hearn as children. \u003ccite>(Courtesy of Nancy Cadigan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Matthew Cadigan Hearn is in his mid-30s, 6 feet, 3 inches tall, with wavy brown hair and black-rimmed glasses. He’s also just 11 months older than his brother Daniel, one of the family members who keeps a close eye on Matthew.\u003c/p>\n\u003cp>\"Asperger's was the term ... that Matt was diagnosed with until they kind of changed it to being on the autistic spectrum,” Daniel said. The two of them have been a part of the Big Wave Project for more than a decade. Daniel coaches the Cougars, one of four teams at Big Wave. “Some of them can't catch the ball thrown at full speed and some can,” he said.\u003c/p>\n\u003cp>“Matt is the big man on the court. He is there to get rebounds and blocks and hopefully throw the ball back up if he catches a rebound,” said Daniel.\u003c/p>\n\u003cp>When asked what position he likes to play, Matt said, “Due to my height, I was either a power forward or center, so I was having to get in the scrimmage and be a bit of a punching bag at times.” Matthew floats through the teams and is thinking about becoming a coach himself.\u003c/p>\n\u003cp>Daniel knows the fear of what could happen to his brother Matthew one day, if the brothers get separated or, worse, if Daniel dies. Matthew lives now with an uncle in South San Francisco, but those who don’t have family willing to step up can face grim alternatives, like group homes that can feel institutional.\u003c/p>\n\u003cp>Daniel said people like his brother shouldn’t be warehoused in grim assisted-living facilities, as they often are in California. “What is schizophrenia? What is autism? What is Down syndrome?” he asks. “These [are] things that affect the community and shouldn't be hidden away, you know? Something that's so public ... and accepting and welcoming [like Big Wave] is just so awesome,” he said.\u003c/p>\n\u003cp>Big Wave, Daniel said, has given Matthew an opportunity to explore and grow as a member of a community. “Matt has his own social circle here, people asking for advice and him really just holding his own audience when talking to a group of people. It was cool to walk into a situation where it's not, ‘Oh, this is Daniel's brother.’ It's like, ‘No, I'm Matt's brother. This is his space.’”\u003c/p>\n\u003cp>Big Wave meets people where they are. It’s OK here for Matthew to work out issues he’s struggling with, without being condemned or dismissed or patronized, said Daniel. “He's started a bad habit of slapping his forehead when playing basketball. He'll miss a shot and get really angry and call himself, ‘Stupid, stupid, stupid!’ And I'm like, ‘Where did that come from? Why are you doing that?’”\u003c/p>\n\u003cfigure id=\"attachment_11898008\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898008\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-scaled.jpeg\" alt='A weather beaten sign outdoors says, \"Welcome to Bid Wave: Join Us Saturday Mornings, 2nd + 4th\"' width=\"2560\" height=\"1920\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-800x600.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-1020x765.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-160x120.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-1536x1152.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-2048x1536.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-1920x1440.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Big Wave has been a place for members to gather for two decades. The farm portion of the land sells eggs, lavender, vegetables and cut flowers. \u003ccite>(KQED/Rachael Myrow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Daniel said he’s grateful to Matthew for teaching him more empathy and patience. But it's also important, Daniel said, that Matthew have a space where he gets to be the big brother. Matthew has training as a peer counselor, something he uses with this community.\u003c/p>\n\u003cp>“You know, if someone's having a bad day, he'll go over and chat with them,” Daniel said. “He'll usually take them aside or have that kind of conversation to see how they're doing and see how they're feeling and talk it out, help them kind of process what they're going through.”\u003c/p>\n\u003cp>The brothers share a lot of history, much of it traumatic. Their mother died of brain cancer in 2009. Daniel guides Matthew through the grief.\u003c/p>\n\u003cp>\"He still feels that same kind of guilt, like, ‘Oh, I wish I could have been more supportive of things,’ and I just have to reinforce that ‘I feel the same way. You know, it's totally fine that you feel that way. And that just means that you're a good person.’” [aside tag=\"disability, community\" label=\"More Related Stories\"]\u003c/p>\n\u003cp>Matthew gets philosophical when thinking about his mother. “Not that I’m a big religion person, but I do like to think that some part of us that makes us unique does move on when our time here passes,” he said.\u003c/p>\n\u003cp>After their mother died, their father went through alcohol and opioid addiction. He was eventually institutionalized. And then, he died.\u003c/p>\n\u003cp>“Matthew has similar guilt [about] my mom [and] my dad of, ‘Oh, maybe I could have talked him out of drinking,’” Daniel said. “We did the best we could. And it's stuff we talk about, you know? Guilt is there. And it's OK to be guilty.”\u003c/p>\n\u003cp>Big Wave has been a critical solace and support to the brothers, and Daniel said he hopes to move into one of the planned caretaker apartments, to help his brother transition to independent living. He’s looking forward to helping Matthew do things like navigate his first fire drill, and cooking for himself.\u003c/p>\n\u003cp>What does Matthew hope for, as he gets ready to move into Big Wave once construction is finished?\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“I am just hoping I can be a part of a community that accepts me for what I am, and not having me be something I am not,” he said.\u003c/p>\n\n","blocks":[],"excerpt":"'I am just hoping I can be a part of a community that accepts me for what I am, and not having me be something I am not,' said Matthew Cadigan Hearn, who plans to live at Big Wave. ","status":"publish","parent":0,"modified":1638903649,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":52,"wordCount":2555},"headData":{"title":"Half Moon Bay's 'Big Wave' Community Welcomes Adults With Intellectual and Developmental Disabilities | KQED","description":"'I am just hoping I can be a part of a community that accepts me for what I am, and not having me be something I am not,' said Matthew Cadigan Hearn, who plans to live at Big Wave. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Half Moon Bay's 'Big Wave' Community Welcomes Adults With Intellectual and Developmental Disabilities","datePublished":"2021-12-04T23:34:41.000Z","dateModified":"2021-12-07T19:00:49.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11897959 https://ww2.kqed.org/news/?p=11897959","disqusUrl":"https://ww2.kqed.org/news/2021/12/04/half-moon-bays-big-wave-community-welcomes-adults-with-intellectual-and-developmental-disabilities/","disqusTitle":"Half Moon Bay's 'Big Wave' Community Welcomes Adults With Intellectual and Developmental Disabilities","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/8e2daf15-ed8d-4422-838b-adf301316e15/audio.mp3","excludeFromSiteSearch":"Include","path":"/news/11897959/half-moon-bays-big-wave-community-welcomes-adults-with-intellectual-and-developmental-disabilities","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>For parents of children with intellectual and developmental disabilities, the fear of dying with no solid plan in place for their children's care runs deep.\u003c/p>\n\u003cp>“There's a clawing specter — that haunting, grinding specter — in your mind: What's going to happen when you pass?” said Jeff Peck, founder and CEO of the \u003ca href=\"https://www.bigwaveproject.org/farm/\" target=\"_blank\" rel=\"noopener noreferrer\">Big Wave Project\u003c/a>, a community led by parents for their adult children in Half Moon Bay.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'Humans are born to contribute to something greater than themselves. If a person only has a five-minute attention span and they can help for five minutes, that's awesome, right? Because they feel like they're part of something.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Michelle Garcia Winner, speech language pathologist","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>It all began two decades ago, with Peck and his son starting Special Olympics basketball teams in this small coastal community a half hour's drive south of San Francisco. Peck's daughter, Elizabeth, has emotional and intellectual disabilities.\u003c/p>\n\u003cp>Standing over six feet tall, silver hair under his baseball cap, Peck has an easy but direct way of coaching. On a foggy Saturday on a field in Half Moon Bay, Peck instructs a small group of adults huddled around him to protect the ball. Then he tells them, “When I say rebound … ,” and everyone — including his daughter — screams, “Rebound!” at the tops of their lungs.\u003c/p>\n\u003cp>The idea with these teams was for everyone to get a chance to hold the ball, to pass the ball, to aim for the backboard and, generally, have a good time with each other. The Pecks started with seven basketball players; now there are around 60, on four teams.\u003c/p>\n\u003cfigure id=\"attachment_11898281\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898281\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-scaled.jpeg\" alt=\"Two young men play basketball on a field on a foggy day.\" width=\"2560\" height=\"1834\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-800x573.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-1020x731.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-160x115.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-1536x1100.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-2048x1467.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Daniel-and-Matt-playing-basketball-1-1920x1376.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Daniel (with the ball) and Matthew Hearn play basketball on a field at Big Wave. \u003ccite>(KQED/Rachael Myrow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“They started when they were 8. Some of them are 30. Some of them started when they were 20. Now they're in their 40s, but they keep coming back because that's the community which they created,” Peck said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>As families sat in the bleachers over the years, the parents began to wonder whether these friendships could develop into something more permanent, a self-sustaining community of some kind.\u003c/p>\n\u003cp>“We have all different levels of ability on the basketball court, and the higher, better players would help the lesser players. That's what this population is,\" said Big Wave Project board member \u003ca href=\"https://www.bigwaveproject.org/kim-gainza/\">Kim Gainza\u003c/a>, mother of Emmy, who will live at Big Wave. \"They support each other and help each other, and if somebody makes a basket, everybody in the gym is cheering,”\u003c/p>\n\u003cp>Gainza summarized those conversations about the future:\u003c/p>\n\u003cp>\"'Well, what's your plan for Joey when you're no longer here?’\u003c/p>\n\u003cp>‘Well, I don't know.’\u003c/p>\n\u003cp>‘What's your plan for Emmy when you're no longer here?’”\u003c/p>\n\u003ch2>An idea takes root\u003c/h2>\n\u003cp>In 1999, Peck bought a windy, grassy plot of land, about 20 acres, across from the Half Moon Bay Airport. At the time, he was mainly interested in providing a comfortable place for sports, with a little farming on the side.\u003c/p>\n\u003cp>There are rows of crops here: strawberries, peas, lettuce, squash and lavender. Colorful chickens go about their business in a large coop. Big Wave sells fresh eggs, mainly to their families. To raise money, they also sell baskets of goodies from their garden — lavender products, flowers and eggs every second and fourth Saturday of the month.\u003c/p>\n\u003cfigure id=\"attachment_11898282\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898282\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-scaled.jpeg\" alt=\"A bed of strawberry plants grows.\" width=\"2560\" height=\"1919\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-800x600.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-1020x765.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-160x120.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-1536x1151.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-2048x1535.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/IMG_7059-1920x1439.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Big Wave sells produce like strawberries, peas, lettuce, squash and lavender. \u003ccite>(KQED/Rachael Myrow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Over the years, the parents' ambition for the place grew. Today, it includes plans for apartments, a community café staffed by residents, and office space to rent out for income. The idea is to provide a place where their adult children and other residents who join will soon be able to live independently, in a community of their peers.\u003c/p>\n\u003cp>“You want your child to be safe, but you want your child to have opportunity, a community. You want them to have a full life,” said Peck.\u003c/p>\n\u003cp>Creating an intentional community for adults with intellectual and developmental disabilities is no small feat. Peck did well for himself as a contractor, which allowed him to buy this land 20 years ago. But it’s taken numerous hearings, environmental reviews and permit applications to get to the point where Big Wave could break ground.\u003c/p>\n\u003cp>From the beginning, there were vociferous, local objections to the development. \u003ca href=\"https://www.smharbor.com/commissioner-sabrina-brennan\" target=\"_blank\" rel=\"noopener noreferrer\" data-stringify-link=\"https://www.smharbor.com/commissioner-sabrina-brennan\" data-sk=\"tooltip_parent\">Sabrina Brennan\u003c/a>, a former San Mateo County harbor commissioner who opposed the project, said they ran the gamut\u003cstrong data-stringify-type=\"bold\">: \u003c/strong>from concerns about the property being in a \u003ca href=\"///Users/pollystryker/Downloads/Skelly%20BigWaveWelness%202021%2010.18.21.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">tsunami inundation zone\u003c/a> (mitigated in consultation with the county) and too close to \u003ca href=\"http://fitzgeraldreserve.org/visit\">Fitzgerald Marine Reserve\u003c/a>, to concerns that Big Wave’s residents would be too far away from social services.\u003c/p>\n\u003cp>Another major point of contention was Big Wave’s original proposal to build a large office park nearby, the proceeds of which would support the nonprofit, according to Gainza. Big Wave eventually dropped those plans to get approval from the \u003ca href=\"https://documents.coastal.ca.gov/reports/2018/7/th6/th6-7-2018-report.pdf\" target=\"_blank\" rel=\"noopener noreferrer\" data-stringify-link=\"https://documents.coastal.ca.gov/reports/2018/7/th6/th6-7-2018-report.pdf\" data-sk=\"tooltip_parent\">California Coastal Commission\u003c/a> and San Mateo County for the mixed-use development now under construction, with permits approved in 2018 and 2020. Loans, donations and grants will cover costs instead. Concerns raised in a lawsuit by a local sanitary district were settled in 2009.\u003cbr>\n\u003cstrong data-stringify-type=\"bold\"> \u003c/strong>\u003cbr>\nIn a statement, Big Wave spokesperson Sarah Sherwood wrote that Big Wave “has been through years of examination and regulation, including the completion of an Environmental Impact Statement and full approval and permits from the California Coastal Commission (2015), which Big Wave supports, as it advocates for adults with disabilities, the environment and the natural beauty of the Coast.” She added, “100 percent of all profits from farm sales, and any mom and pop businesses on the property go directly to our nonprofit, to serve the needs of adults with developmental disabilities, such as (autism), Down’s (syndrome) and brain injuries.”\u003c/p>\n\u003cp>The green light finally came during the pandemic. Now 68, Peck knows he has a limited window of time to establish something financially sustainable that can outlast him and the other original parents. “All of the revenue from these commercial assets [will] go to keep the operating costs low,” said Peck.\u003c/p>\n\u003cp>A core group of families paid about $60,000 each for their adult child to have a place at Big Wave, although costs have risen with construction prices and county requirements, like a traffic light.\u003c/p>\n\u003cp>In addition to the 57 apartments where Elizabeth and other adults with intellectual and developmental disabilities will live, there will be office space for rent, with some tenants already slated, like a martial arts academy, a florist, a culinary academy and a public café. The café will be overseen by Julie and Paul Shenkman, who run the popular \u003ca href=\"https://www.samschowderhouse.com\" target=\"_blank\" rel=\"noopener noreferrer\">Sam’s Chowder House\u003c/a> nearby. They’re Big Wave parents, too, and their child Sam will live at Big Wave.\u003c/p>\n\u003cp>“It will be a breakfast-lunch café. It’ll be muffins and coffee and sandwiches and soups. It will provide a place for the kids to have a job,” Julie Shenkman said.\u003c/p>\n\u003cp>The model is kind of like a co-op, or an intentional community or commune, with a board — including residents — to run it all. Peck knows this is a big, expensive experiment.\u003c/p>\n\u003cp>“This is my life's work,” he said. “When you have children that look at the world differently, you get an insight into life and death and history and spirituality and wisdom that you wouldn't get otherwise.”\u003c/p>\n\u003ch2>\u003cb>Support for kids, but not for adults \u003c/b>\u003c/h2>\n\u003cp>California's \u003ca href=\"https://www.dds.ca.gov/RC/\" target=\"_blank\" rel=\"noopener noreferrer\">Department of Developmental Services\u003c/a> serves more than 350,000 people with intellectual and developmental disabilities. It’s a sizable — and vulnerable — population.\u003c/p>\n\u003cp>This state is more generous than many others. But still, parents have to know how to work the system, according to Michelle Garcia Winner, a San Jos\u003cspan style=\"font-weight: 400\">é\u003c/span>-based speech language pathologist who’s worked with people on the autism spectrum for years.\u003c/p>\n\u003cp>She said there are plenty of programs for \u003cem>kids\u003c/em> with intellectual and developmental disabilities (IDDs), but fewer that are available for adults.\u003c/p>\n\u003cp>“I don't ever see our government being able to manage the needs of adults in a meaningful way,” she said.\u003c/p>\n\u003cp>Garcia Winner said overcoming isolation and finding purpose is very important for the IDD community, just as it is for the rest of us. “Humans are born to contribute to something greater than themselves. If a person only has a five-minute attention span and they can help for five minutes, that's awesome, right? Because they feel like they're part of something.”\u003c/p>\n\u003cp>Dr. Lawrence Fung, an assistant professor of psychiatry and behavioral sciences at Stanford, is the proud father of a neurodiverse teenager. He directs the \u003ca href=\"https://med.stanford.edu/neurodiversity.html\" target=\"_blank\" rel=\"noopener noreferrer\">Stanford Neurodiversity Project\u003c/a>, which runs several programs including a specialized employment program for people with autism called \u003ca href=\"https://med.stanford.edu/neurodiversity/NaW.html\" target=\"_blank\" rel=\"noopener noreferrer\">Neurodiversity at Work\u003c/a>. It pairs people on the autism spectrum with jobs well-suited to their skill sets.\u003c/p>\n\u003cp>\"A lot of neurodiverse people have significant strengths that can contribute much to society, if they are discovered,” Fung said. He added that it's important for people like his son to be able to find work and build a strong sense of identity.\u003c/p>\n\u003ch2>A tale of two brothers\u003c/h2>\n\u003cfigure id=\"attachment_11898285\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898285\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-scaled.jpeg\" alt=\"Two boys grin as they show off toy airplanes in an outdoor setting.\" width=\"2560\" height=\"1891\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-800x591.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-1020x754.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-160x118.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-1536x1135.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-2048x1513.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/MatthewL_DanielR-by-Nancy-Cadigan-2-1920x1419.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Matthew (left) and Daniel Hearn as children. \u003ccite>(Courtesy of Nancy Cadigan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Matthew Cadigan Hearn is in his mid-30s, 6 feet, 3 inches tall, with wavy brown hair and black-rimmed glasses. He’s also just 11 months older than his brother Daniel, one of the family members who keeps a close eye on Matthew.\u003c/p>\n\u003cp>\"Asperger's was the term ... that Matt was diagnosed with until they kind of changed it to being on the autistic spectrum,” Daniel said. The two of them have been a part of the Big Wave Project for more than a decade. Daniel coaches the Cougars, one of four teams at Big Wave. “Some of them can't catch the ball thrown at full speed and some can,” he said.\u003c/p>\n\u003cp>“Matt is the big man on the court. He is there to get rebounds and blocks and hopefully throw the ball back up if he catches a rebound,” said Daniel.\u003c/p>\n\u003cp>When asked what position he likes to play, Matt said, “Due to my height, I was either a power forward or center, so I was having to get in the scrimmage and be a bit of a punching bag at times.” Matthew floats through the teams and is thinking about becoming a coach himself.\u003c/p>\n\u003cp>Daniel knows the fear of what could happen to his brother Matthew one day, if the brothers get separated or, worse, if Daniel dies. Matthew lives now with an uncle in South San Francisco, but those who don’t have family willing to step up can face grim alternatives, like group homes that can feel institutional.\u003c/p>\n\u003cp>Daniel said people like his brother shouldn’t be warehoused in grim assisted-living facilities, as they often are in California. “What is schizophrenia? What is autism? What is Down syndrome?” he asks. “These [are] things that affect the community and shouldn't be hidden away, you know? Something that's so public ... and accepting and welcoming [like Big Wave] is just so awesome,” he said.\u003c/p>\n\u003cp>Big Wave, Daniel said, has given Matthew an opportunity to explore and grow as a member of a community. “Matt has his own social circle here, people asking for advice and him really just holding his own audience when talking to a group of people. It was cool to walk into a situation where it's not, ‘Oh, this is Daniel's brother.’ It's like, ‘No, I'm Matt's brother. This is his space.’”\u003c/p>\n\u003cp>Big Wave meets people where they are. It’s OK here for Matthew to work out issues he’s struggling with, without being condemned or dismissed or patronized, said Daniel. “He's started a bad habit of slapping his forehead when playing basketball. He'll miss a shot and get really angry and call himself, ‘Stupid, stupid, stupid!’ And I'm like, ‘Where did that come from? Why are you doing that?’”\u003c/p>\n\u003cfigure id=\"attachment_11898008\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg class=\"size-full wp-image-11898008\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-scaled.jpeg\" alt='A weather beaten sign outdoors says, \"Welcome to Bid Wave: Join Us Saturday Mornings, 2nd + 4th\"' width=\"2560\" height=\"1920\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-scaled.jpeg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-800x600.jpeg 800w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-1020x765.jpeg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-160x120.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-1536x1152.jpeg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-2048x1536.jpeg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2021/12/Big-Wave-sign-1920x1440.jpeg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Big Wave has been a place for members to gather for two decades. The farm portion of the land sells eggs, lavender, vegetables and cut flowers. \u003ccite>(KQED/Rachael Myrow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Daniel said he’s grateful to Matthew for teaching him more empathy and patience. But it's also important, Daniel said, that Matthew have a space where he gets to be the big brother. Matthew has training as a peer counselor, something he uses with this community.\u003c/p>\n\u003cp>“You know, if someone's having a bad day, he'll go over and chat with them,” Daniel said. “He'll usually take them aside or have that kind of conversation to see how they're doing and see how they're feeling and talk it out, help them kind of process what they're going through.”\u003c/p>\n\u003cp>The brothers share a lot of history, much of it traumatic. Their mother died of brain cancer in 2009. Daniel guides Matthew through the grief.\u003c/p>\n\u003cp>\"He still feels that same kind of guilt, like, ‘Oh, I wish I could have been more supportive of things,’ and I just have to reinforce that ‘I feel the same way. You know, it's totally fine that you feel that way. And that just means that you're a good person.’” \u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"tag":"disability, community","label":"More Related Stories "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Matthew gets philosophical when thinking about his mother. “Not that I’m a big religion person, but I do like to think that some part of us that makes us unique does move on when our time here passes,” he said.\u003c/p>\n\u003cp>After their mother died, their father went through alcohol and opioid addiction. He was eventually institutionalized. And then, he died.\u003c/p>\n\u003cp>“Matthew has similar guilt [about] my mom [and] my dad of, ‘Oh, maybe I could have talked him out of drinking,’” Daniel said. “We did the best we could. And it's stuff we talk about, you know? Guilt is there. And it's OK to be guilty.”\u003c/p>\n\u003cp>Big Wave has been a critical solace and support to the brothers, and Daniel said he hopes to move into one of the planned caretaker apartments, to help his brother transition to independent living. He’s looking forward to helping Matthew do things like navigate his first fire drill, and cooking for himself.\u003c/p>\n\u003cp>What does Matthew hope for, as he gets ready to move into Big Wave once construction is finished?\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“I am just hoping I can be a part of a community that accepts me for what I am, and not having me be something I am not,” he said.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11897959/half-moon-bays-big-wave-community-welcomes-adults-with-intellectual-and-developmental-disabilities","authors":["250"],"programs":["news_26731"],"categories":["news_6266","news_28250","news_8"],"tags":["news_3921","news_980","news_30330","news_30329","news_1164","news_30332","news_30333","news_30331","news_30233"],"featImg":"news_11897962","label":"news_26731"},"news_11889115":{"type":"posts","id":"news_11889115","meta":{"index":"posts_1591205157","site":"news","id":"11889115","score":null,"sort":[1632167695000]},"guestAuthors":[],"slug":"how-return-to-in-person-teaching-is-leaving-many-disabled-kids-in-limbo","title":"How Return to In-Person Teaching Is Leaving Many Disabled Kids in Limbo","publishDate":1632167695,"format":"standard","headTitle":"KQED News","labelTerm":{},"content":"\u003cp>The school year at Duarte Unified School District, 20 miles east of Los Angeles, started a month ago, but Brady, Ellie and Jack Fitzgibbons have yet to receive any instruction from their teachers.\u003c/p>\n\u003cp>The 13-year-old triplets are on the autism spectrum, and their mother, Julie Fitzgibbons, didn’t feel safe sending them to school because she doubted her kids would keep their masks on all day.\u003c/p>\n\u003cp>\"They struggle with masks. They won’t be able to be in a class with 36 kids wearing masks,\" Fitzgibbons said. \"Communication is important for autistic kids. They can’t talk with masks.\"\u003c/p>\n\u003cp>But the district has delayed making accommodations for their disabilities through independent study, the only option for remote learning this year. So far, the triplets have lost four weeks of instruction.\u003c/p>\n\u003cp>Across the state, other parents are being placed in a similar position after more than a year of distance learning during which \u003ca href=\"https://www.washingtonpost.com/education/2021/05/20/students-disabilities-virtual-learning-failure/\">students with disabilities fell behind disproportionately\u003c/a>. Meanwhile, the legislators who designed the recently passed \u003ca href=\"https://calmatters.org/education/2021/08/california-school-reopenings-quarantine-independent-study/\">independent study laws\u003c/a> say this form of remote learning might not be able to accommodate all students’ needs.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Last year, \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220AB10\">California’s public schools offered remote instruction through distance learning in response to the coronavirus pandemic\u003c/a>. Teachers were required to provide \"daily live interaction.\"\u003c/p>\n\u003cp>This school year, with vaccines available to adults and children age 12 and older, live, in-person instruction is the expectation. Parents who want to keep their children learning virtually need to apply to their district for independent study, an option predating the pandemic primarily intended for special situations like traveling athletes or child actors.\u003c/p>\n\u003cp>The situation is even more complicated for parents of students with disabilities. Those parents work with districts to create what’s called an individualized education program, or IEP, for their children. These programs aren’t set up for distance learning.\u003c/p>\n\u003cp>Hence Julie Fitzgibbons’s dilemma.\u003c/p>\n\u003cp>At the beginning of the school year, Fitzgibbons asked the district to place her triplets in independent study. The district, however, said virtual instruction was incompatible with the needs of the triplets and the services they require.\u003c/p>\n\u003cp>Some educators across the state say even if they can provide special education services through independent study, they’re wholly inadequate.\u003c/p>\n\u003cfigure id=\"attachment_11889124\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003cimg class=\"size-full wp-image-11889124\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/09/091521_brady_students_with_disabilities_calmatters-e1632162645560.jpeg\" alt=\"A student, Brady, takes a break from his schoolwork by watching educational videos on a tablet on top of a bed.\" width=\"1024\" height=\"682\">\u003cfigcaption class=\"wp-caption-text\">Brady takes a break from doing his schoolwork and watches educational videos on a tablet in Monrovia, on Sept. 15, 2021. “There is no way with three kids at home I could have been in all the rooms,” said Julie Fitzgibbons, who expressed relief with having behavioral therapists at home. \u003ccite>(Pablo Unzueta/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But Fitzgibbons said she was forced to decide between her kids’ safety and academic progress. If she kept her kids at home, she would have to forfeit their special education services like speech therapy, occupational therapy and extra help in the classroom. If she sent them back to campus for in-person instruction, they would be at greater risk of contracting the coronavirus.\u003c/p>\n\u003cp>The district and Fitzgibbons eventually reached a compromise that would allow her kids to get at least some of the services they received last year, which included six hours a day of one-on-one help and an hour a week of speech and occupational therapy. Fitzgibbons declined to provide details about the new agreement because it still needs to be approved by the Duarte Unified school board.\u003c/p>\n\u003cp>\"Special education is so individualized. There are cases where it is an easy fit with independent study,\" said District Superintendent Gordon Amerson. \"There will be other cases where other options need to be discussed.\"\u003c/p>\n\u003cfigure id=\"attachment_11889123\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003cimg class=\"size-full wp-image-11889123\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/09/091521_fitzgibbons_students_with_disabilities_calmatters-e1632162661334.jpeg\" alt=\"A mother of triplets all on the autism spectrum is talking with her son, Brady, to try and get him to go back to his desk in their home in Monrovia, California\" width=\"1024\" height=\"682\">\u003cfigcaption class=\"wp-caption-text\">Julie Fitzgibbons, the mother of triplets all on the autism spectrum, tries to get her son, Brady, 13, to come back to his desk in Monrovia, on Sept. 15, 2021. “This has been hard on parents,” said Fitzgibbons, who had to enroll her kids’ in independent study. \u003ccite>(Pablo Unzueta/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>Uneasy return to campus\u003c/h3>\n\u003cp>In Northern California, Connie Nakano has three children who attend school in the Elk Grove Unified School District, about 15 miles southeast of Sacramento. Her youngest and oldest children, age 7 and 10, both are on the autism spectrum.\u003c/p>\n\u003cp>Nakano opted for all of her children to be in independent study this year instead of returning them to campuses. She said she was most concerned about the spread of the delta variant, unmasked kids sitting together for lunch and quarantines disrupting her children’s learning.\u003c/p>\n\u003cp>But she said her middle child, who does not have a disability, has had a much easier time in independent study.\u003c/p>\n\u003cp>\"There are some inequities here. Parents are allowed to choose between in-person and online,\" Nakano said. \"However, those two options don’t translate to students who have disabilities.\"\u003c/p>\n\u003cp>[aside label=\"Related Stories\" tag=\"remote-learning\"]\u003c/p>\n\u003cp>She said Elk Grove Unified denied her request for remote special education services. Nakano said she’s still negotiating with the district. In the meantime, she placed them in independent study so they don’t fall further behind. But so far, her two children on the autism spectrum already are having trouble keeping up with school.\u003c/p>\n\u003cp>\"We’re having to make a choice between services and safety,\" Nakano said.\u003c/p>\n\u003cp>Anne Rigali, director of special education at Elk Grove Unified, said special education has been challenging to merge with independent study. But she said the district is hoping to find creative solutions for all of their students who aren’t ready to return to campus.\u003c/p>\n\u003cp>\"We’re working with the families to see how we can best support their child,\" she said. \"We’re trying to address each family and hold these conversations.\"\u003c/p>\n\u003ch3>Some parents want a return to distance learning\u003c/h3>\n\u003cp>While \u003ca href=\"https://fivethirtyeight.com/features/most-parents-want-their-kids-back-in-the-classroom-fewer-agree-on-the-covid-19-safety-measures/\">most parents across the state had a negative experience last school year\u003c/a>, both Nakano and Fitzgibbons said distance learning worked for their kids. Last year, Nakano’s children received extra help from teachers’ aides through Zoom. Her kids also got more real-time instruction compared to this year in independent study.\u003c/p>\n\u003cp>Fitzgibbons said her school provided therapists who worked remotely with her triplets.\u003c/p>\n\u003cp>\"We’re worried we’re gonna lose our service providers and our time slots,\" she said. \"These people have worked with our kids for 20 months now. Our kids did really well with distance learning.\"\u003c/p>\n\u003cfigure class=\"wp-block-image size-large\">\n\u003cfigure id=\"attachment_206985\" class=\"wp-caption alignnone\" style=\"max-width: 780px\">\u003cimg class=\"wp-image-206985\" src=\"https://calmatters.network/wp-content/uploads/2021/09/091521_Triplets_PU_web_07.jpg\" alt=\"A teenage boy in a long-sleeved T-shirt in a bedroom looks above the camera, ostensibly at a screen.\" width=\"780\" height=\"519\" data-recalc-dims=\"1\">\u003cfigcaption class=\"wp-caption-text\">Jack watches a video related to his schoolwork in Monrovia on Sept. 15, 2021. \"There is no way to go back with 37 kids in a classroom,\" said his mother, Julie Fitzgibbons. \"With masks and not being able to communicate very well, and autism, there is just no way we can go back like normal.\"\u003c/figcaption>\u003c/figure>\n\u003c/figure>\n\u003cp>Fitzgibbons is currently going through her family’s insurance to pay for private instructors and therapists while her triplets wait for the district to finalize their agreement for special education services.\u003c/p>\n\u003cp>In response to questions from CalMatters, California State Assemblymembers Kevin McCarty and Phil Ting issued a joint statement that said special education services can be delivered through independent study.\u003c/p>\n\u003cp>\"However, the student’s [individualized education program] is required to be updated first, to make sure the student is not receiving a lower standard of services,\" they said. \"There may be a determination in the IEP that the student cannot be served in independent study and get their needs met, and that would be a group discussion.\"\u003c/p>\n\u003cp>They added that a new state guidance to be released as early as this week \"will dispel many of the myths that are causing confusion about independent study for families, including the rights of special education students to independent study.\"\u003c/p>\n\u003ch3>Special education incompatible with independent study\u003c/h3>\n\u003cp>Meanwhile, school district officials are struggling to reconcile the federal laws that govern special education and the state laws that govern independent study and remote learning. As a result, students with disabilities across California are either waiting to get their special education services or forfeiting them for independent study.\u003c/p>\n\u003cp>\"The legislators put us between a rock and a hard place,\" said \u003ca href=\"https://eastvalleyselpa.org/info/contact-us\">Patty Metheny, an administrator who oversees special education\u003c/a> in multiple school districts in San Bernardino County. \"Because those are the only two options, the consequences are great.\"\u003c/p>\n\u003cp>According to the federal Individuals with Disabilities Education Act, public schools must offer all students a free appropriate public education by providing any services required to accommodate a disability.\u003c/p>\n\u003cp>But as the name suggests, independent study requires a degree of independence, and some students aren’t able to work on their own. As a result, certain students with disabilities who aren’t ready to return to campuses might not be receiving a free appropriate public education in independent study.\u003c/p>\n\u003cp>\"It’s very difficult to address all of the goals and needs students have through independent study,\" said Amanda Brooke, a deputy superintendent at the Imperial County Office of Education. \"We’ve even seen general education students fall behind.\"\u003c/p>\n\u003cp>[pullquote size='medium' align='right' citation=\"Connie Nakano, Elk Grove Unified parent\"]'There are some inequities here. Parents are allowed to choose between in-person and online. However, those two options don’t translate to students who have disabilities.'[/pullquote]\u003c/p>\n\u003cp>The language in the \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220AB130\">independent study laws\u003c/a> don’t specify exactly how many hours a day students must receive real-time, or synchronous, instruction. They only state that students in transitional kindergarten through the third grade must receive daily synchronous instruction. For grades 4 through 12, students must receive weekly real-time instruction.\u003c/p>\n\u003cp>On the other hand, individualized education plans for students with disabilities contain much more detail. The plans often state the number of hours of specialized instruction or therapy that a student must receive each week.\u003c/p>\n\u003cp>At the Imperial County Office of Education, special education teacher Jazmin Carrillo said her students are getting between two and three hours of real-time instruction daily. But even then, she struggles to help them make progress in both their learning and their behaviors.\u003c/p>\n\u003cp>\"I typically am there to help regulate their behaviors. I need to be there in person to show them,\" Carrillo said. \"Sometimes they just turn their cameras off and that cuts me off from them.\"\u003c/p>\n\u003cp>Nakano said her children are meeting with their teachers for about 30 minutes every day through Zoom.\u003c/p>\n\u003cp>\"It’s a brief check-in,\" she said. \"It’s not exactly instruction.\"\u003c/p>\n\u003cp>During distance learning last year, her two children on the autism spectrum got more than two hours of real-time instruction every day, Nakano said. While that still doesn’t beat in-person instruction, she’s worried her children on the autism spectrum will fall behind even more if they don’t get the services they need.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\"We want to make sure we get them up to speed so they don’t have to repeat a grade,\" she said. \"For our family, we think about it every day.\"\u003c/p>\n\n","blocks":[],"excerpt":"Some parents are being forced to decide between sending their kids with disabilities to school, risking coronavirus infection, and getting all their needs met, or keeping them safe at home and forfeiting their special education services.","status":"publish","parent":0,"modified":1632180980,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":46,"wordCount":1828},"headData":{"title":"How Return to In-Person Teaching Is Leaving Many Disabled Kids in Limbo | KQED","description":"Some parents are being forced to decide between sending their kids with disabilities to school, risking coronavirus infection, and getting all their needs met, or keeping them safe at home and forfeiting their special education services.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"How Return to In-Person Teaching Is Leaving Many Disabled Kids in Limbo","datePublished":"2021-09-20T19:54:55.000Z","dateModified":"2021-09-20T23:36:20.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11889115 https://ww2.kqed.org/news/?p=11889115","disqusUrl":"https://ww2.kqed.org/news/2021/09/20/how-return-to-in-person-teaching-is-leaving-many-disabled-kids-in-limbo/","disqusTitle":"How Return to In-Person Teaching Is Leaving Many Disabled Kids in Limbo","source":"CalMatters","sourceUrl":"https://calmatters.org/education/k-12-education/2021/09/special-education/","nprByline":"Joe Hong","path":"/news/11889115/how-return-to-in-person-teaching-is-leaving-many-disabled-kids-in-limbo","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>The school year at Duarte Unified School District, 20 miles east of Los Angeles, started a month ago, but Brady, Ellie and Jack Fitzgibbons have yet to receive any instruction from their teachers.\u003c/p>\n\u003cp>The 13-year-old triplets are on the autism spectrum, and their mother, Julie Fitzgibbons, didn’t feel safe sending them to school because she doubted her kids would keep their masks on all day.\u003c/p>\n\u003cp>\"They struggle with masks. They won’t be able to be in a class with 36 kids wearing masks,\" Fitzgibbons said. \"Communication is important for autistic kids. They can’t talk with masks.\"\u003c/p>\n\u003cp>But the district has delayed making accommodations for their disabilities through independent study, the only option for remote learning this year. So far, the triplets have lost four weeks of instruction.\u003c/p>\n\u003cp>Across the state, other parents are being placed in a similar position after more than a year of distance learning during which \u003ca href=\"https://www.washingtonpost.com/education/2021/05/20/students-disabilities-virtual-learning-failure/\">students with disabilities fell behind disproportionately\u003c/a>. Meanwhile, the legislators who designed the recently passed \u003ca href=\"https://calmatters.org/education/2021/08/california-school-reopenings-quarantine-independent-study/\">independent study laws\u003c/a> say this form of remote learning might not be able to accommodate all students’ needs.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Last year, \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220AB10\">California’s public schools offered remote instruction through distance learning in response to the coronavirus pandemic\u003c/a>. Teachers were required to provide \"daily live interaction.\"\u003c/p>\n\u003cp>This school year, with vaccines available to adults and children age 12 and older, live, in-person instruction is the expectation. Parents who want to keep their children learning virtually need to apply to their district for independent study, an option predating the pandemic primarily intended for special situations like traveling athletes or child actors.\u003c/p>\n\u003cp>The situation is even more complicated for parents of students with disabilities. Those parents work with districts to create what’s called an individualized education program, or IEP, for their children. These programs aren’t set up for distance learning.\u003c/p>\n\u003cp>Hence Julie Fitzgibbons’s dilemma.\u003c/p>\n\u003cp>At the beginning of the school year, Fitzgibbons asked the district to place her triplets in independent study. The district, however, said virtual instruction was incompatible with the needs of the triplets and the services they require.\u003c/p>\n\u003cp>Some educators across the state say even if they can provide special education services through independent study, they’re wholly inadequate.\u003c/p>\n\u003cfigure id=\"attachment_11889124\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003cimg class=\"size-full wp-image-11889124\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/09/091521_brady_students_with_disabilities_calmatters-e1632162645560.jpeg\" alt=\"A student, Brady, takes a break from his schoolwork by watching educational videos on a tablet on top of a bed.\" width=\"1024\" height=\"682\">\u003cfigcaption class=\"wp-caption-text\">Brady takes a break from doing his schoolwork and watches educational videos on a tablet in Monrovia, on Sept. 15, 2021. “There is no way with three kids at home I could have been in all the rooms,” said Julie Fitzgibbons, who expressed relief with having behavioral therapists at home. \u003ccite>(Pablo Unzueta/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But Fitzgibbons said she was forced to decide between her kids’ safety and academic progress. If she kept her kids at home, she would have to forfeit their special education services like speech therapy, occupational therapy and extra help in the classroom. If she sent them back to campus for in-person instruction, they would be at greater risk of contracting the coronavirus.\u003c/p>\n\u003cp>The district and Fitzgibbons eventually reached a compromise that would allow her kids to get at least some of the services they received last year, which included six hours a day of one-on-one help and an hour a week of speech and occupational therapy. Fitzgibbons declined to provide details about the new agreement because it still needs to be approved by the Duarte Unified school board.\u003c/p>\n\u003cp>\"Special education is so individualized. There are cases where it is an easy fit with independent study,\" said District Superintendent Gordon Amerson. \"There will be other cases where other options need to be discussed.\"\u003c/p>\n\u003cfigure id=\"attachment_11889123\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003cimg class=\"size-full wp-image-11889123\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/09/091521_fitzgibbons_students_with_disabilities_calmatters-e1632162661334.jpeg\" alt=\"A mother of triplets all on the autism spectrum is talking with her son, Brady, to try and get him to go back to his desk in their home in Monrovia, California\" width=\"1024\" height=\"682\">\u003cfigcaption class=\"wp-caption-text\">Julie Fitzgibbons, the mother of triplets all on the autism spectrum, tries to get her son, Brady, 13, to come back to his desk in Monrovia, on Sept. 15, 2021. “This has been hard on parents,” said Fitzgibbons, who had to enroll her kids’ in independent study. \u003ccite>(Pablo Unzueta/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>Uneasy return to campus\u003c/h3>\n\u003cp>In Northern California, Connie Nakano has three children who attend school in the Elk Grove Unified School District, about 15 miles southeast of Sacramento. Her youngest and oldest children, age 7 and 10, both are on the autism spectrum.\u003c/p>\n\u003cp>Nakano opted for all of her children to be in independent study this year instead of returning them to campuses. She said she was most concerned about the spread of the delta variant, unmasked kids sitting together for lunch and quarantines disrupting her children’s learning.\u003c/p>\n\u003cp>But she said her middle child, who does not have a disability, has had a much easier time in independent study.\u003c/p>\n\u003cp>\"There are some inequities here. Parents are allowed to choose between in-person and online,\" Nakano said. \"However, those two options don’t translate to students who have disabilities.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"Related Stories ","tag":"remote-learning"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>She said Elk Grove Unified denied her request for remote special education services. Nakano said she’s still negotiating with the district. In the meantime, she placed them in independent study so they don’t fall further behind. But so far, her two children on the autism spectrum already are having trouble keeping up with school.\u003c/p>\n\u003cp>\"We’re having to make a choice between services and safety,\" Nakano said.\u003c/p>\n\u003cp>Anne Rigali, director of special education at Elk Grove Unified, said special education has been challenging to merge with independent study. But she said the district is hoping to find creative solutions for all of their students who aren’t ready to return to campus.\u003c/p>\n\u003cp>\"We’re working with the families to see how we can best support their child,\" she said. \"We’re trying to address each family and hold these conversations.\"\u003c/p>\n\u003ch3>Some parents want a return to distance learning\u003c/h3>\n\u003cp>While \u003ca href=\"https://fivethirtyeight.com/features/most-parents-want-their-kids-back-in-the-classroom-fewer-agree-on-the-covid-19-safety-measures/\">most parents across the state had a negative experience last school year\u003c/a>, both Nakano and Fitzgibbons said distance learning worked for their kids. Last year, Nakano’s children received extra help from teachers’ aides through Zoom. Her kids also got more real-time instruction compared to this year in independent study.\u003c/p>\n\u003cp>Fitzgibbons said her school provided therapists who worked remotely with her triplets.\u003c/p>\n\u003cp>\"We’re worried we’re gonna lose our service providers and our time slots,\" she said. \"These people have worked with our kids for 20 months now. Our kids did really well with distance learning.\"\u003c/p>\n\u003cfigure class=\"wp-block-image size-large\">\n\u003cfigure id=\"attachment_206985\" class=\"wp-caption alignnone\" style=\"max-width: 780px\">\u003cimg class=\"wp-image-206985\" src=\"https://calmatters.network/wp-content/uploads/2021/09/091521_Triplets_PU_web_07.jpg\" alt=\"A teenage boy in a long-sleeved T-shirt in a bedroom looks above the camera, ostensibly at a screen.\" width=\"780\" height=\"519\" data-recalc-dims=\"1\">\u003cfigcaption class=\"wp-caption-text\">Jack watches a video related to his schoolwork in Monrovia on Sept. 15, 2021. \"There is no way to go back with 37 kids in a classroom,\" said his mother, Julie Fitzgibbons. \"With masks and not being able to communicate very well, and autism, there is just no way we can go back like normal.\"\u003c/figcaption>\u003c/figure>\n\u003c/figure>\n\u003cp>Fitzgibbons is currently going through her family’s insurance to pay for private instructors and therapists while her triplets wait for the district to finalize their agreement for special education services.\u003c/p>\n\u003cp>In response to questions from CalMatters, California State Assemblymembers Kevin McCarty and Phil Ting issued a joint statement that said special education services can be delivered through independent study.\u003c/p>\n\u003cp>\"However, the student’s [individualized education program] is required to be updated first, to make sure the student is not receiving a lower standard of services,\" they said. \"There may be a determination in the IEP that the student cannot be served in independent study and get their needs met, and that would be a group discussion.\"\u003c/p>\n\u003cp>They added that a new state guidance to be released as early as this week \"will dispel many of the myths that are causing confusion about independent study for families, including the rights of special education students to independent study.\"\u003c/p>\n\u003ch3>Special education incompatible with independent study\u003c/h3>\n\u003cp>Meanwhile, school district officials are struggling to reconcile the federal laws that govern special education and the state laws that govern independent study and remote learning. As a result, students with disabilities across California are either waiting to get their special education services or forfeiting them for independent study.\u003c/p>\n\u003cp>\"The legislators put us between a rock and a hard place,\" said \u003ca href=\"https://eastvalleyselpa.org/info/contact-us\">Patty Metheny, an administrator who oversees special education\u003c/a> in multiple school districts in San Bernardino County. \"Because those are the only two options, the consequences are great.\"\u003c/p>\n\u003cp>According to the federal Individuals with Disabilities Education Act, public schools must offer all students a free appropriate public education by providing any services required to accommodate a disability.\u003c/p>\n\u003cp>But as the name suggests, independent study requires a degree of independence, and some students aren’t able to work on their own. As a result, certain students with disabilities who aren’t ready to return to campuses might not be receiving a free appropriate public education in independent study.\u003c/p>\n\u003cp>\"It’s very difficult to address all of the goals and needs students have through independent study,\" said Amanda Brooke, a deputy superintendent at the Imperial County Office of Education. \"We’ve even seen general education students fall behind.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'There are some inequities here. Parents are allowed to choose between in-person and online. However, those two options don’t translate to students who have disabilities.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Connie Nakano, Elk Grove Unified parent","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The language in the \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220AB130\">independent study laws\u003c/a> don’t specify exactly how many hours a day students must receive real-time, or synchronous, instruction. They only state that students in transitional kindergarten through the third grade must receive daily synchronous instruction. For grades 4 through 12, students must receive weekly real-time instruction.\u003c/p>\n\u003cp>On the other hand, individualized education plans for students with disabilities contain much more detail. The plans often state the number of hours of specialized instruction or therapy that a student must receive each week.\u003c/p>\n\u003cp>At the Imperial County Office of Education, special education teacher Jazmin Carrillo said her students are getting between two and three hours of real-time instruction daily. But even then, she struggles to help them make progress in both their learning and their behaviors.\u003c/p>\n\u003cp>\"I typically am there to help regulate their behaviors. I need to be there in person to show them,\" Carrillo said. \"Sometimes they just turn their cameras off and that cuts me off from them.\"\u003c/p>\n\u003cp>Nakano said her children are meeting with their teachers for about 30 minutes every day through Zoom.\u003c/p>\n\u003cp>\"It’s a brief check-in,\" she said. \"It’s not exactly instruction.\"\u003c/p>\n\u003cp>During distance learning last year, her two children on the autism spectrum got more than two hours of real-time instruction every day, Nakano said. While that still doesn’t beat in-person instruction, she’s worried her children on the autism spectrum will fall behind even more if they don’t get the services they need.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"We want to make sure we get them up to speed so they don’t have to repeat a grade,\" she said. \"For our family, we think about it every day.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11889115/how-return-to-in-person-teaching-is-leaving-many-disabled-kids-in-limbo","authors":["byline_news_11889115"],"categories":["news_18540","news_8"],"tags":["news_980","news_27350","news_20013","news_29103","news_28515"],"featImg":"news_11889125","label":"source_news_11889115"},"news_11871630":{"type":"posts","id":"news_11871630","meta":{"index":"posts_1591205157","site":"news","id":"11871630","score":null,"sort":[1620169587000]},"guestAuthors":[],"slug":"what-its-like-learning-with-autism-during-covid","title":"Youth Takeover: What Learning With Autism Is Like for One SF Teen","publishDate":1620169587,"format":"audio","headTitle":"The California Report Magazine | KQED News","labelTerm":{"term":26731,"site":"news"},"content":"\u003cp>\u003ci>This piece was written by Zachary Yieh, a 16-year-old sophomore from George Washington High School in San Francisco for KQED’s \u003ca href=\"https://www.kqed.org/youthtakeover\">Youth Takeover Week\u003c/a>.\u003c/i>\u003c/p>\n\u003cp>When I was about 4 1/2 years old, I was diagnosed with a learning disability known as autism. It was very rough growing up with it, considering the fact that I wasn't able to have an actual conversation until I was about 7 years old.\u003c/p>\n\u003cfigure id=\"attachment_11871653\" class=\"wp-caption alignright\" style=\"max-width: 160px\">\u003cimg class=\"size-thumbnail wp-image-11871653\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/04/Zack-Yieh-image-160x179.jpeg\" alt=\"\" width=\"160\" height=\"179\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/04/Zack-Yieh-image-160x179.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/04/Zack-Yieh-image.jpeg 567w\" sizes=\"(max-width: 160px) 100vw, 160px\">\u003cfigcaption class=\"wp-caption-text\">Zachary Yieh, a 16-year-old sophomore from George Washington High School in San Francisco.\u003c/figcaption>\u003c/figure>\n\u003cp>School was very difficult for me when I was younger. I had been working at a different pace than other students. Teachers would always discuss with my parents about ways to improve my learning. I have an Individual Education Plan (IEP), which allows special accommodations for school. But I still face some discrimination from school staff. I asked my mom, Janet Yieh, about how that played out when I was younger.\u003c/p>\n\u003cp>“This really sticks out in my head because it was right when you were going into kindergarten,\" she said. \"I stopped to talk to your brother's former kindergarten teacher and I asked her if she was ready to have you in her class the next year. And her response was, 'I don't think Zachary is going to be a good fit for my classroom.' \"\u003c/p>\n\u003cp>She said she was really shocked by the teacher’s response, but found another kindergarten teacher who was willing to take me on.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>My mother is a huge advocate for me. She made sure I got every therapy, camp program and accommodations. She created a parent support group at my elementary school. She wanted to help the parents that were struggling and the ones that didn't know how to advocate for their children. There was obvious discrimination against students with disabilities, often from the teachers who were supposed to be supporting me. Teachers regularly underestimated my ability to do schoolwork because I didn’t have functional speech at that time.\u003c/p>\n\u003cp>By the time I got into middle school, my disability was almost invisible. I told a few people that I was autistic, but they didn't believe me. This is probably because they see others with autism whose behavior was different than mine. But because I got support from my parents when I was little, I didn't struggle at school anymore. Many people with autism, however, have social problems, sensory processing issues and even difficulty understanding instructions at my current school.\u003c/p>\n\u003cp>My case manager, Ms. Claus, helps me to advocate for myself. She also makes sure that I'm on the right track with my schoolwork. Another way I'm able to keep up with school is by communicating with my teachers to make accommodations when necessary. I recently spoke to Ms. Claus about discrimination in schools.\u003c/p>\n\u003cp>\"Students with IEPs face discrimination from a variety of sources and in a variety of levels ranging from their peers and other adults,\" said Claus. \"Ranging from small comments or name-calling, all the way up to people calling into question whether or not [students with disabilities] receiving accommodations and services is appropriate.”\u003c/p>\n\u003cp>Ms. Claus said some students and parents think it’s unfair to give extra time and help to some students and not others. But she disagrees.\u003c/p>\n\u003cp>“That's problematic because students with IEPs need those things to be able to succeed,\" said Claus. \"And when you talk about fairness, it shouldn't be everyone getting exactly the same thing. It should be everyone getting what they need.”\u003c/p>\n\u003cp>[aside postID=\"forum_2010101879189\" label=\"Forum on school equity\"]\u003c/p>\n\u003cp>She said funding for special education services is another factor that leads to discrimination.\u003c/p>\n\u003cp>I've heard classmates say \"this person has autism,\" or use the R-word as a slur. People assume that students who have disabilities are just straight-up stupid, or that they can accomplish goals in life and their feelings won't be hurt when insulted. Bullies often manipulate people with disabilities by playing mind games people with disabilities don't understand.\u003c/p>\n\u003cp>Right now during distance learning, many students with individual education plans are struggling to have all their accommodations met because of the pandemic. Thousands of students who would normally have one-on-one aid are not receiving services. This means they cannot meet their academic, behavioral, social and emotional goals. These students will be further behind when we go back.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The fight for disability rights is still an ongoing battle. It helps that there are people like my mom, my case manager and even my friends who are passionate to help people with disabilities.\u003c/p>\n\n","blocks":[],"excerpt":"For many families, the pandemic has made student learning difficult. But some students with disabilities feel left behind by remote learning.","status":"publish","parent":0,"modified":1620236582,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":18,"wordCount":782},"headData":{"title":"Youth Takeover: What Learning With Autism Is Like for One SF Teen | KQED","description":"For many families, the pandemic has made student learning difficult. But some students with disabilities feel left behind by remote learning.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Youth Takeover: What Learning With Autism Is Like for One SF Teen","datePublished":"2021-05-04T23:06:27.000Z","dateModified":"2021-05-05T17:43:02.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11871630 https://ww2.kqed.org/news/?p=11871630","disqusUrl":"https://ww2.kqed.org/news/2021/05/04/what-its-like-learning-with-autism-during-covid/","disqusTitle":"Youth Takeover: What Learning With Autism Is Like for One SF Teen","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcrmag/2021/05/ZachYiehTCRPM.mp3","nprByline":"Zachary Yieh","path":"/news/11871630/what-its-like-learning-with-autism-during-covid","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003ci>This piece was written by Zachary Yieh, a 16-year-old sophomore from George Washington High School in San Francisco for KQED’s \u003ca href=\"https://www.kqed.org/youthtakeover\">Youth Takeover Week\u003c/a>.\u003c/i>\u003c/p>\n\u003cp>When I was about 4 1/2 years old, I was diagnosed with a learning disability known as autism. It was very rough growing up with it, considering the fact that I wasn't able to have an actual conversation until I was about 7 years old.\u003c/p>\n\u003cfigure id=\"attachment_11871653\" class=\"wp-caption alignright\" style=\"max-width: 160px\">\u003cimg class=\"size-thumbnail wp-image-11871653\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/04/Zack-Yieh-image-160x179.jpeg\" alt=\"\" width=\"160\" height=\"179\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2021/04/Zack-Yieh-image-160x179.jpeg 160w, https://ww2.kqed.org/app/uploads/sites/10/2021/04/Zack-Yieh-image.jpeg 567w\" sizes=\"(max-width: 160px) 100vw, 160px\">\u003cfigcaption class=\"wp-caption-text\">Zachary Yieh, a 16-year-old sophomore from George Washington High School in San Francisco.\u003c/figcaption>\u003c/figure>\n\u003cp>School was very difficult for me when I was younger. I had been working at a different pace than other students. Teachers would always discuss with my parents about ways to improve my learning. I have an Individual Education Plan (IEP), which allows special accommodations for school. But I still face some discrimination from school staff. I asked my mom, Janet Yieh, about how that played out when I was younger.\u003c/p>\n\u003cp>“This really sticks out in my head because it was right when you were going into kindergarten,\" she said. \"I stopped to talk to your brother's former kindergarten teacher and I asked her if she was ready to have you in her class the next year. And her response was, 'I don't think Zachary is going to be a good fit for my classroom.' \"\u003c/p>\n\u003cp>She said she was really shocked by the teacher’s response, but found another kindergarten teacher who was willing to take me on.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>My mother is a huge advocate for me. She made sure I got every therapy, camp program and accommodations. She created a parent support group at my elementary school. She wanted to help the parents that were struggling and the ones that didn't know how to advocate for their children. There was obvious discrimination against students with disabilities, often from the teachers who were supposed to be supporting me. Teachers regularly underestimated my ability to do schoolwork because I didn’t have functional speech at that time.\u003c/p>\n\u003cp>By the time I got into middle school, my disability was almost invisible. I told a few people that I was autistic, but they didn't believe me. This is probably because they see others with autism whose behavior was different than mine. But because I got support from my parents when I was little, I didn't struggle at school anymore. Many people with autism, however, have social problems, sensory processing issues and even difficulty understanding instructions at my current school.\u003c/p>\n\u003cp>My case manager, Ms. Claus, helps me to advocate for myself. She also makes sure that I'm on the right track with my schoolwork. Another way I'm able to keep up with school is by communicating with my teachers to make accommodations when necessary. I recently spoke to Ms. Claus about discrimination in schools.\u003c/p>\n\u003cp>\"Students with IEPs face discrimination from a variety of sources and in a variety of levels ranging from their peers and other adults,\" said Claus. \"Ranging from small comments or name-calling, all the way up to people calling into question whether or not [students with disabilities] receiving accommodations and services is appropriate.”\u003c/p>\n\u003cp>Ms. Claus said some students and parents think it’s unfair to give extra time and help to some students and not others. But she disagrees.\u003c/p>\n\u003cp>“That's problematic because students with IEPs need those things to be able to succeed,\" said Claus. \"And when you talk about fairness, it shouldn't be everyone getting exactly the same thing. It should be everyone getting what they need.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"forum_2010101879189","label":"Forum on school equity "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>She said funding for special education services is another factor that leads to discrimination.\u003c/p>\n\u003cp>I've heard classmates say \"this person has autism,\" or use the R-word as a slur. People assume that students who have disabilities are just straight-up stupid, or that they can accomplish goals in life and their feelings won't be hurt when insulted. Bullies often manipulate people with disabilities by playing mind games people with disabilities don't understand.\u003c/p>\n\u003cp>Right now during distance learning, many students with individual education plans are struggling to have all their accommodations met because of the pandemic. Thousands of students who would normally have one-on-one aid are not receiving services. This means they cannot meet their academic, behavioral, social and emotional goals. These students will be further behind when we go back.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The fight for disability rights is still an ongoing battle. It helps that there are people like my mom, my case manager and even my friends who are passionate to help people with disabilities.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11871630/what-its-like-learning-with-autism-during-covid","authors":["byline_news_11871630"],"programs":["news_26731"],"categories":["news_25641"],"tags":["news_980","news_25262","news_28515","news_4449","news_23013"],"featImg":"news_11872205","label":"news_26731"},"news_11818037":{"type":"posts","id":"news_11818037","meta":{"index":"posts_1591205157","site":"news","id":"11818037","score":null,"sort":[1590238891000]},"guestAuthors":[],"slug":"in-solidarity-people-activist-with-autism-works-to-ensure-nobody-in-community-left-behind","title":"'In Solidarity, People!': Activist With Autism Works to Ensure Nobody in Community Left Behind","publishDate":1590238891,"format":"audio","headTitle":"The California Report Magazine | KQED News","labelTerm":{"term":26731,"site":"news"},"content":"\u003cp>For Héctor Ramírez, routine is important. He has rituals that are comforting to him, like taking his service dog on two walks every day.\u003c/p>\n\u003cp>“I have to say hello to people,” Ramírez said. “And I have like a certain number, like 30 people, I have to say hello. And so when I'm walking around, I do that with my neighbors. So everybody thinks that I'm really sociable, but I'm actually very introverted. I'm actually really shy.”\u003c/p>\n\u003cp>Ramírez has a round, expressive face and kind eyes. He is autistic and hard of hearing. He’s 45, and he lives with his mom in a rent-controlled mobile home park in Chatsworth, in the San Fernando valley.\u003c/p>\n\u003cfigure id=\"attachment_11819502\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11819502\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-536x402.jpg 536w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut.jpg 1600w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">The entrance Héctor's home, Sunburst Park, where many disabled and elderly people live. \u003ccite>(Héctor Ramírez)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Now, because of social distancing, there’s no one to say hi to on his walks.\u003c/p>\n\u003cp>“So I just had to really make new routines and remember my cultural values of respecting my elders and community. And, you know, just holding on to those things in every way that I can,” Ramírez said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Instead, he waves to his neighbors out the window. And he leaves peanut butter outside at night for skunks. He said the animals represent humility in his indigenous Tongva culture.\u003c/p>\n\u003ch3>\u003cstrong>Serving His Community During a Crisis\u003c/strong>\u003c/h3>\n\u003cp>Many of Ramírez’s neighbors are elderly and disabled. So late in March when Californians were starting to panic about the coronavirus, he posted fliers on folks’ doors, asking them to reach out if they needed food delivered. Ramírez posted a \u003ca href=\"https://www.youtube.com/watch?v=UXd-RWPWcw8\">video on YouTube \u003c/a>where he’s in his living room, showing the fliers and explaining the food insecurity affecting his community.\u003c/p>\n\u003cp>[aside postID=\"news_11806414\" label=\"Related coverage\"]\u003c/p>\n\u003cp>“With everybody hoarding and panicking right now, they made things a lot more difficult for people who are more vulnerable right now, which is our seniors and our disabled,” he said. “That’s what I’m doing, instead of panicking — which I am — but this is how I’m working with my anxiety.”\u003c/p>\n\u003cp>Ramírez said that he doesn’t like feeling helpless. Before the pandemic, he often volunteered at his neighborhood food pantry. He’s on the board of directors for the National Disability Rights Network and for Disability Rights California.\u003c/p>\n\u003cfigure id=\"attachment_11819503\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11819503\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-536x402.jpg 536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Héctor Ramírez (far right) with his fellow pantry volunteers. \u003ccite>(Héctor Ramírez)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But now, his work is focused on the people around him. Many of his neighbors responded to his fliers saying they couldn’t get to the grocery store. So he’s delivering meals to them.\u003c/p>\n\u003cp>“That’s what I’m doing to take care of my family and my community. In solidarity, people!” Ramírez said.\u003c/p>\n\u003ch3>\u003cstrong>Overcoming an Isolated Past\u003c/strong>\u003c/h3>\n\u003cp>At first, sheltering in place weirdly reminded Ramírez of his childhood, growing up in Camarillo State Mental Hospital in Ventura Country. He was sent there when he was 4 years old. Then, the \u003ca href=\"https://www.disabilityrightsca.org/publications/rula-rights-under-the-lanterman-act-complete-manual\">Lanterman Developmental Disabilities Act\u003c/a> became California law in 1977, and it \u003ca href=\"https://www.disabilityrightsca.org/publications/rula-rights-under-the-lanterman-act-complete-manual\">stated\u003c/a> that people with developmental disabilities have the right to services so they can live an independent life. Because of this law and changing attitudes about autism, Ramírez was able to transition back to living with his family when he was 14 years old.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Héctor Ramírez\"]'I think this is one of the ways in which we contribute to society. We show people that even as we keep going, they have to keep going.'[/pullquote]\u003c/p>\n\u003cp>Now, that building that was once the mental hospital is California State University Channel Islands. And Ramírez and his mom are living together, navigating their relationship in close quarters.\u003c/p>\n\u003cp>“We've ridden a roller coaster of emotions and moods,” Ramírez said. “There're days and times where we both cope with it really good and there's times where we both really struggle to the point that, you know, we can lose our tempers.”\u003c/p>\n\u003cp>On May 22, Ramírez sent me an email that said, \"I feel so crappy right now, my aunt died yesterday afternoon bc of this horrible virus.\" Now, as he is mourning a loss, Ramírez is grateful he and his mom get to spend this time together — time that was taken away from him as a kid.\u003c/p>\n\u003ch3>\u003cstrong>Disabled and an Essential Volunteer\u003c/strong>\u003c/h3>\n\u003cp>Ramírez said the disabled community is often left behind when it comes to disasters, citing \u003ca href=\"https://www.kqed.org/news/11784435/how-pges-power-shutoffs-sparked-an-east-bay-disability-rights-campaign\">PG&E power shutoffs\u003c/a>, wildfires and pandemics. But for his whole adult life, Ramírez worked as an activist, lobbying for better access and social safety nets for people with disabilities.\u003c/p>\n\u003cp>“I think this is one of the ways in which we contribute to society,” Ramírez said. “We show people that even as we keep going, they have to keep going.”\u003c/p>\n\u003cp>https://twitter.com/CROWRDREAM/status/1261315787484131328\u003c/p>\n\u003cp>Recently, Ramírez went to downtown Los Angeles to be tested for COVID-19. He told me that on the way to the bus stop he was anxious, but then he saw eagles flying above his house, which reminded him of his ancestors.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Ramírez had been feeling sick, and he wanted to know if he had the virus. A few days later, his COVID-19 test came back negative. For him, it’s a sign: to keep helping people.\u003c/p>\n\n","blocks":[],"excerpt":"For a lot of people with autism, losing their daily routine can be disarming. But Héctor Ramírez, an activist with autism in Los Angeles, says that “we can make new ones.”","status":"publish","parent":0,"modified":1590532914,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":972},"headData":{"title":"'In Solidarity, People!': Activist With Autism Works to Ensure Nobody in Community Left Behind | KQED","description":"For a lot of people with autism, losing their daily routine can be disarming. But Héctor Ramírez, an activist with autism in Los Angeles, says that “we can make new ones.”","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"'In Solidarity, People!': Activist With Autism Works to Ensure Nobody in Community Left Behind","datePublished":"2020-05-23T13:01:31.000Z","dateModified":"2020-05-26T22:41:54.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11818037 https://ww2.kqed.org/news/?p=11818037","disqusUrl":"https://ww2.kqed.org/news/2020/05/23/in-solidarity-people-activist-with-autism-works-to-ensure-nobody-in-community-left-behind/","disqusTitle":"'In Solidarity, People!': Activist With Autism Works to Ensure Nobody in Community Left Behind","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/b20148fd-8c74-4b4a-8fa1-abc301732f17/audio.mp3","path":"/news/11818037/in-solidarity-people-activist-with-autism-works-to-ensure-nobody-in-community-left-behind","audioDuration":319000,"audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>For Héctor Ramírez, routine is important. He has rituals that are comforting to him, like taking his service dog on two walks every day.\u003c/p>\n\u003cp>“I have to say hello to people,” Ramírez said. “And I have like a certain number, like 30 people, I have to say hello. And so when I'm walking around, I do that with my neighbors. So everybody thinks that I'm really sociable, but I'm actually very introverted. I'm actually really shy.”\u003c/p>\n\u003cp>Ramírez has a round, expressive face and kind eyes. He is autistic and hard of hearing. He’s 45, and he lives with his mom in a rent-controlled mobile home park in Chatsworth, in the San Fernando valley.\u003c/p>\n\u003cfigure id=\"attachment_11819502\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11819502\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut-536x402.jpg 536w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43256_IMG_20190517_084046146-qut.jpg 1600w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">The entrance Héctor's home, Sunburst Park, where many disabled and elderly people live. \u003ccite>(Héctor Ramírez)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Now, because of social distancing, there’s no one to say hi to on his walks.\u003c/p>\n\u003cp>“So I just had to really make new routines and remember my cultural values of respecting my elders and community. And, you know, just holding on to those things in every way that I can,” Ramírez said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Instead, he waves to his neighbors out the window. And he leaves peanut butter outside at night for skunks. He said the animals represent humility in his indigenous Tongva culture.\u003c/p>\n\u003ch3>\u003cstrong>Serving His Community During a Crisis\u003c/strong>\u003c/h3>\n\u003cp>Many of Ramírez’s neighbors are elderly and disabled. So late in March when Californians were starting to panic about the coronavirus, he posted fliers on folks’ doors, asking them to reach out if they needed food delivered. Ramírez posted a \u003ca href=\"https://www.youtube.com/watch?v=UXd-RWPWcw8\">video on YouTube \u003c/a>where he’s in his living room, showing the fliers and explaining the food insecurity affecting his community.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11806414","label":"Related coverage "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“With everybody hoarding and panicking right now, they made things a lot more difficult for people who are more vulnerable right now, which is our seniors and our disabled,” he said. “That’s what I’m doing, instead of panicking — which I am — but this is how I’m working with my anxiety.”\u003c/p>\n\u003cp>Ramírez said that he doesn’t like feeling helpless. Before the pandemic, he often volunteered at his neighborhood food pantry. He’s on the board of directors for the National Disability Rights Network and for Disability Rights California.\u003c/p>\n\u003cfigure id=\"attachment_11819503\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11819503\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43254_1-Food-pantry-4-25-2020-qut-536x402.jpg 536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Héctor Ramírez (far right) with his fellow pantry volunteers. \u003ccite>(Héctor Ramírez)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But now, his work is focused on the people around him. Many of his neighbors responded to his fliers saying they couldn’t get to the grocery store. So he’s delivering meals to them.\u003c/p>\n\u003cp>“That’s what I’m doing to take care of my family and my community. In solidarity, people!” Ramírez said.\u003c/p>\n\u003ch3>\u003cstrong>Overcoming an Isolated Past\u003c/strong>\u003c/h3>\n\u003cp>At first, sheltering in place weirdly reminded Ramírez of his childhood, growing up in Camarillo State Mental Hospital in Ventura Country. He was sent there when he was 4 years old. Then, the \u003ca href=\"https://www.disabilityrightsca.org/publications/rula-rights-under-the-lanterman-act-complete-manual\">Lanterman Developmental Disabilities Act\u003c/a> became California law in 1977, and it \u003ca href=\"https://www.disabilityrightsca.org/publications/rula-rights-under-the-lanterman-act-complete-manual\">stated\u003c/a> that people with developmental disabilities have the right to services so they can live an independent life. Because of this law and changing attitudes about autism, Ramírez was able to transition back to living with his family when he was 14 years old.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'I think this is one of the ways in which we contribute to society. We show people that even as we keep going, they have to keep going.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Héctor Ramírez","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Now, that building that was once the mental hospital is California State University Channel Islands. And Ramírez and his mom are living together, navigating their relationship in close quarters.\u003c/p>\n\u003cp>“We've ridden a roller coaster of emotions and moods,” Ramírez said. “There're days and times where we both cope with it really good and there's times where we both really struggle to the point that, you know, we can lose our tempers.”\u003c/p>\n\u003cp>On May 22, Ramírez sent me an email that said, \"I feel so crappy right now, my aunt died yesterday afternoon bc of this horrible virus.\" Now, as he is mourning a loss, Ramírez is grateful he and his mom get to spend this time together — time that was taken away from him as a kid.\u003c/p>\n\u003ch3>\u003cstrong>Disabled and an Essential Volunteer\u003c/strong>\u003c/h3>\n\u003cp>Ramírez said the disabled community is often left behind when it comes to disasters, citing \u003ca href=\"https://www.kqed.org/news/11784435/how-pges-power-shutoffs-sparked-an-east-bay-disability-rights-campaign\">PG&E power shutoffs\u003c/a>, wildfires and pandemics. But for his whole adult life, Ramírez worked as an activist, lobbying for better access and social safety nets for people with disabilities.\u003c/p>\n\u003cp>“I think this is one of the ways in which we contribute to society,” Ramírez said. “We show people that even as we keep going, they have to keep going.”\u003c/p>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"singleTwitterStatus","attributes":{"named":{"id":"1261315787484131328"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\n\u003cp>Recently, Ramírez went to downtown Los Angeles to be tested for COVID-19. He told me that on the way to the bus stop he was anxious, but then he saw eagles flying above his house, which reminded him of his ancestors.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Ramírez had been feeling sick, and he wanted to know if he had the virus. A few days later, his COVID-19 test came back negative. For him, it’s a sign: to keep helping people.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11818037/in-solidarity-people-activist-with-autism-works-to-ensure-nobody-in-community-left-behind","authors":["11660"],"programs":["news_26731"],"categories":["news_8"],"tags":["news_980","news_27350","news_21312"],"featImg":"news_11819505","label":"news_26731"},"news_11668789":{"type":"posts","id":"news_11668789","meta":{"index":"posts_1591205157","site":"news","id":"11668789","score":null,"sort":[1526585361000]},"guestAuthors":[],"slug":"does-cbd-help-kids-with-autism-new-clinical-trial-aims-to-find-out","title":"Does CBD Help Kids With Autism? New Clinical Trial Aims to Find Out","publishDate":1526585361,"format":"audio","headTitle":"The California Report | KQED News","labelTerm":{"term":72,"site":"news"},"content":"\u003cp>A new clinical trial will attempt to determine how certain chemical compounds in marijuana might help children with autism. The compound in question is cannabidiol, more commonly known as CBD.\u003c/p>\n\u003cp>Cannabis is largely made up of two chemicals: tetrahydrocannabinol, THC, and CBD. When consumed, THC is thought to be responsible for the euphoric high associated with marijuana use, while CBD provides a calming sensation.\u003c/p>\n\u003cp>Some studies have found that CBD may be useful in lowering anxiety and \u003ca href=\"https://www.kqed.org/news/11644339/one-santa-rosa-familys-fight-to-allow-medical-cannabis-in-california-schools\" target=\"_blank\" rel=\"noopener\">helping children with epilepsy\u003c/a>.\u003c/p>\n\u003cp>Now, the \u003ca href=\"https://www.cmcr.ucsd.edu\">Center for Medicinal Cannabis Research (CMCR)\u003c/a> at the UC San Diego School of Medicine aims to determine if marijuana could be useful in curbing challenging behaviors associated with \u003ca href=\"https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml\">Autism Spectrum Disorder\u003c/a>.\u003c/p>\n\u003cp>For example, there are oppositional behaviors that can turn a common request, like washing the dishes, into a screaming match.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Dr. Igor Grant, director of CMCR, said that while some parents of autistic children already use CBD as a calming aid, this study could help back up anecdotal evidence with hard science.\u003c/p>\n\u003cp>“Some people have thought that anxiety may play a role in this, in the autistic child,” said Grant. “We don’t know that for sure. And to that extent, CBD might affect that anxiety channel, or other kind of chemical properties in the brain.”\u003c/p>\n\u003caside class=\"alignright\">\n\u003ch3>\u003ca href=\"https://www.kqed.org/news/11644339/one-santa-rosa-familys-fight-to-allow-medical-cannabis-in-california-schools\">One Santa Rosa Family's Fight to Allow Medical Cannabis in California Schools\u003c/a>\u003c/h3>\n\u003cfigure>\u003ca href=\"https://www.kqed.org/news/11644339/one-santa-rosa-familys-fight-to-allow-medical-cannabis-in-california-schools\">\u003cimg src=\"https://ww2.kqed.org/wp-content/uploads/sites/10/2018/01/medical-cannabis-1180x1073.jpg\" alt=\"\">\u003c/a>\u003c/figure>\n\u003c/aside>\n\u003cp>While details of the clinical trial are still being ironed out, it’s thought that the study will focus on around 30 school-age children, ages 6-12.\u003c/p>\n\u003cp>The trial would split the children into two groups, with one half given CBD and the other half placebos. Then, after a period of weeks, the groups would switch. This would allow the scientists to measure the CBD effect against the child’s own behavioral patterns.\u003c/p>\n\u003cp>President of the \u003ca href=\"https://www.autismsocietysandiego.org\">Autism Society San Diego\u003c/a> Amy Munera said she’s excited about the possibilities of the trial, but encourages parents to consult with their pediatrician before introducing any new treatments.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Pending a green light from state and federal agencies, the clinical trial should begin in early 2019.\u003c/p>\n\n","blocks":[],"excerpt":"While some parents of autistic children already use CBD as a calming aid, the new study could help back up anecdotal evidence with hard science.","status":"publish","parent":0,"modified":1526593988,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":13,"wordCount":356},"headData":{"title":"Does CBD Help Kids With Autism? New Clinical Trial Aims to Find Out | KQED","description":"While some parents of autistic children already use CBD as a calming aid, the new study could help back up anecdotal evidence with hard science.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Does CBD Help Kids With Autism? New Clinical Trial Aims to Find Out","datePublished":"2018-05-17T19:29:21.000Z","dateModified":"2018-05-17T21:53:08.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11668789 https://ww2.kqed.org/news/?p=11668789","disqusUrl":"https://ww2.kqed.org/news/2018/05/17/does-cbd-help-kids-with-autism-new-clinical-trial-aims-to-find-out/","disqusTitle":"Does CBD Help Kids With Autism? New Clinical Trial Aims to Find Out","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcr/2018/05/WileyCBDAutismStudy.mp3","nprByline":"Michelle Wiley","path":"/news/11668789/does-cbd-help-kids-with-autism-new-clinical-trial-aims-to-find-out","audioDuration":127000,"audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>A new clinical trial will attempt to determine how certain chemical compounds in marijuana might help children with autism. The compound in question is cannabidiol, more commonly known as CBD.\u003c/p>\n\u003cp>Cannabis is largely made up of two chemicals: tetrahydrocannabinol, THC, and CBD. When consumed, THC is thought to be responsible for the euphoric high associated with marijuana use, while CBD provides a calming sensation.\u003c/p>\n\u003cp>Some studies have found that CBD may be useful in lowering anxiety and \u003ca href=\"https://www.kqed.org/news/11644339/one-santa-rosa-familys-fight-to-allow-medical-cannabis-in-california-schools\" target=\"_blank\" rel=\"noopener\">helping children with epilepsy\u003c/a>.\u003c/p>\n\u003cp>Now, the \u003ca href=\"https://www.cmcr.ucsd.edu\">Center for Medicinal Cannabis Research (CMCR)\u003c/a> at the UC San Diego School of Medicine aims to determine if marijuana could be useful in curbing challenging behaviors associated with \u003ca href=\"https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml\">Autism Spectrum Disorder\u003c/a>.\u003c/p>\n\u003cp>For example, there are oppositional behaviors that can turn a common request, like washing the dishes, into a screaming match.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Dr. Igor Grant, director of CMCR, said that while some parents of autistic children already use CBD as a calming aid, this study could help back up anecdotal evidence with hard science.\u003c/p>\n\u003cp>“Some people have thought that anxiety may play a role in this, in the autistic child,” said Grant. “We don’t know that for sure. And to that extent, CBD might affect that anxiety channel, or other kind of chemical properties in the brain.”\u003c/p>\n\u003caside class=\"alignright\">\n\u003ch3>\u003ca href=\"https://www.kqed.org/news/11644339/one-santa-rosa-familys-fight-to-allow-medical-cannabis-in-california-schools\">One Santa Rosa Family's Fight to Allow Medical Cannabis in California Schools\u003c/a>\u003c/h3>\n\u003cfigure>\u003ca href=\"https://www.kqed.org/news/11644339/one-santa-rosa-familys-fight-to-allow-medical-cannabis-in-california-schools\">\u003cimg src=\"https://ww2.kqed.org/wp-content/uploads/sites/10/2018/01/medical-cannabis-1180x1073.jpg\" alt=\"\">\u003c/a>\u003c/figure>\n\u003c/aside>\n\u003cp>While details of the clinical trial are still being ironed out, it’s thought that the study will focus on around 30 school-age children, ages 6-12.\u003c/p>\n\u003cp>The trial would split the children into two groups, with one half given CBD and the other half placebos. Then, after a period of weeks, the groups would switch. This would allow the scientists to measure the CBD effect against the child’s own behavioral patterns.\u003c/p>\n\u003cp>President of the \u003ca href=\"https://www.autismsocietysandiego.org\">Autism Society San Diego\u003c/a> Amy Munera said she’s excited about the possibilities of the trial, but encourages parents to consult with their pediatrician before introducing any new treatments.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Pending a green light from state and federal agencies, the clinical trial should begin in early 2019.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11668789/does-cbd-help-kids-with-autism-new-clinical-trial-aims-to-find-out","authors":["byline_news_11668789"],"programs":["news_72"],"categories":["news_457","news_8","news_356"],"tags":["news_980","news_19963","news_23263","news_2043","news_102"],"featImg":"news_11668932","label":"news_72"},"news_11635561":{"type":"posts","id":"news_11635561","meta":{"index":"posts_1591205157","site":"news","id":"11635561","score":null,"sort":[1512779338000]},"guestAuthors":[],"slug":"after-the-fires-north-bay-school-for-autistic-children-seeks-a-new-normal","title":"After the Fires, North Bay School for Autistic Children Seeks a New Normal","publishDate":1512779338,"format":"audio","headTitle":"The California Report | KQED News","labelTerm":{"term":72,"site":"news"},"content":"\u003cp>For the 120 students at Santa Rosa’s Anova Center for Education, the past two months have been tough. \u003c/p>\n\u003cp>The fire that raged through wine country \u003ca href=\"https://ww2.kqed.org/news/2017/10/12/fire-destroys-santa-rosa-school-for-students-with-autism/\" rel=\"noopener\" target=\"_blank\">burned the school down\u003c/a>, and nine families lost their houses, too. This school for high-functioning kids with autism was a home away from home for them. One 12-year-old boy takes us on the journey to recovery, for him and his school. \u003c/p>\n\u003ch2>Unsettled\u003c/h2>\n\u003cp>On a mid-October morning, not long after the Tubbs Fire destroyed his home and school, Jaco Sodhi sits down to play the piano at the Santa Rosa home of family friends. He, his twin sister, and his parents are staying here – for now. It’s the fourth place they’ve landed since the disaster upended their lives.\u003c/p>\n\u003cfigure id=\"attachment_11635595\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-11635595 size-medium\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Raj Sodhi helps his son, Jaco, with a piano lesson on Oct. 21 at the home of a family friend. It’s the fourth place they’ve stayed since the North Bay fires destroyed their home — and Jaco's school, the Anova Center for Education. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Jaco’s playing from memory because all his sheet music burned. His dad, Raj Sodhi, helps him work through a piece of music. It helps them feel a little bit normal.\u003c/p>\n\u003cp>The family had to evacuate their own home not far from here in the early hours of October 9. Jaco’s dad, who plays jazz, loaded his double bass into the family minivan. His mom, Lucia Cascio, a portrait photographer, grabbed her camera bag. And his sister, Sofia, managed to take her trombone.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But Jaco ran out of time. He left without much besides his Star Wars shirt — the one that’s got Darth Vader on it playing baseball with a light saber. He says it all happened too fast.\u003c/p>\n\u003cp>[contextly_sidebar id=\"8UGsw3iGUvWTEZrO2PooVKZzB2GHR3h9\"]\u003c/p>\n\u003cp>“My sister said, ‘We are evacuating, Jaco, just get out of your dang bed' — yeah my sister was cruel that way — and I was able to grab, literally my toothbrush, toothpaste and only one pair of clothes.”\u003c/p>\n\u003cp>Jaco’s pretty unhappy about that. The family thought they were just being cautious, that they’d be able to return soon. But their house, and everything in it, burned down.\u003c/p>\n\u003cp>“If I could have grabbed more,” Jaco says, “I probably would have grabbed all my fencing gear, which costs like hundreds of dollars.”\u003c/p>\n\u003cp>Jaco’s got big brown eyes, braces and a very rational mind. He was diagnosed with autism when he was three-and-a-half years old. Kids on the autism spectrum don’t tend to do well with big changes — and a lot is up in the air for him right now.\u003c/p>\n\u003cfigure id=\"attachment_11635597\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635597\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Raj Sodhi helps his son, Jaco, with a piano lesson on Oct. 21 at the home of a family friend. It’s the fourth place they’ve stayed since the North Bay fires destroyed their home — and Jaco's school, the Anova Center for Education. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>He puts on a good face, but he’s clearly struggling with his feelings. He talks about riding an imaginary lion into his devastated neighborhood — to chase off looters. And he tells his mom — three times — how mad he is “that I was able to grab, basically nothing.\"\u003c/p>\n\u003cp>The rental housing market here is so tight that Jaco’s parents have even been talking about leaving the county. Jaco says “necessity beats friends” so he’ll go if he has to. But his mom says the upheaval is taking a toll.\u003c/p>\n\u003cp>She explains how low he seemed after two recent tours of other schools for autistic kids in San Mateo and Contra Costa counties, saying the thought of changing was “heavy for him.”\u003c/p>\n\u003cp>Jaco interrupts. “We’re probably not gonna change schools,” he asks, “are we?”\u003c/p>\n\u003cp>Cascio tries to soothe him.\u003c/p>\n\u003cp>“We’re trying really hard to stay here, right?” she says. “That’s what mommy and daddy are trying really hard to do.”\u003c/p>\n\u003cp>“Got it,” Jaco says, sighing heavily. “That’s what I was just waiting to hear, that we’re actually trying to stay and we’re not just trying to move away.”\u003c/p>\n\u003ch2>Transformation\u003c/h2>\n\u003cp>To understand just how hard this is, it helps to know what things were like for Jaco before Anova. He spent kindergarten, first and second grades at a public school, but he struggled.\u003c/p>\n\u003cp>Cascio says there were instances when Jaco was aggressive with his peers, “pulling down the shelves in the library where they were trying to keep him away from the other kids, and it was just getting worse and worse.”\u003c/p>\n\u003cp>The whole time, she and her husband were pushing to find the right classroom environment and behavior plan for him at his public school, but Jaco started having suicidal thoughts. And his outbursts were regular.\u003c/p>\n\u003cp>Sofia, Jaco’s sister, says it was hard to see how misunderstood he was.\u003c/p>\n\u003cfigure id=\"attachment_11635599\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635599\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jaco and Sofia Sodhi, who are twins, relax on Oct. 21 at the home of a family friend. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Kids would approach her, “not as Sofia but, like, ‘You’re Jaco’s sister,” she says. “‘You’re the one who’s related to the guy that pulled my hair’ or something. It’s like: No! He’s Jaco. He’s not just a hair-puller. He can learn stuff.”\u003c/p>\n\u003cp>When Jaco got to Anova, everything changed. He speaks softly when he talks about it, gazing down at the table. It’s clearly painful.\u003c/p>\n\u003cp>“They weren’t treating me as if I was a bad person,” he says, “for like the first time in a while ... It hasn’t happened in a while for me.”\u003c/p>\n\u003cp>Anova’s students come from as far as 80 miles away. Like Jaco, most are referred by their public school districts, which cover the costs. When Jaco got in, he skipped a grade. And his outbursts? They dwindled to almost nothing.\u003c/p>\n\u003cp>The kids can leave class whenever they need a break. There are quiet rooms for calming down, rooms where they can jump on a trampoline or swing, to help stimulate their vestibular systems. Plus, counselors to talk to. And there’s a therapy dog, named Larry.\u003c/p>\n\u003cp>Jaco loves his Larry breaks. Sometimes, he grabs some of Larry’s toys and plays with him. He gives him belly rubs. And he likes to “just flop his ears around.”\u003c/p>\n\u003cp>“Most of the time he just sleeps on his bed,” Jaco adds, “which hopefully wasn’t, which probably might have been burned in the fire.” He pauses. “Hopefully wasn’t.”\u003c/p>\n\u003ch2>Finding Temporary Space\u003c/h2>\n\u003cp>Andrew Bailey is Anova’s CEO and director of educational services. He also co-founded the school 17 years ago. As a therapist, he had come to realize that high-functioning kids with autism, the ones who often test at grade level, were falling through the cracks.\u003c/p>\n\u003cp>“All of us really started understanding that the students like the ones we serve are not misbehaving because they're bad or manipulative, and that is a game-changer for our students,” he says in an interview at the school’s administrative offices, which didn’t burn. \u003c/p>\n\u003cp>“They're understood and they're addressed with sensory sensitivity.”\u003c/p>\n\u003cfigure id=\"attachment_11635601\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635601\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Andrew Bailey, Anova Center for Education’s CEO and co-founder, surveys the charred remains of his Santa Rosa school, which serves high-functioning kids with autism. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bailey knows that sensitivity will be more important than ever when classes start up again.\u003c/p>\n\u003cp>“They do understand the dangers in life,” he says, so when something like a fire comes along, the stresses in the students’ lives become exacerbated.\u003c/p>\n\u003cp>The school’s therapists know all that, and when school gets back in session, Bailey says, they’ll be ready to help students like Jaco assess how they’re feeling and calm down using techniques such as \"breathing and imagination and rationalization.”\u003c/p>\n\u003cp>Anova was able to lease extra space in its administrative building, and a suite of rooms in a new wing is buzzing with teachers and therapists finishing lesson plans and ordering supplies.\u003c/p>\n\u003cfigure id=\"attachment_11635602\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635602\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Anova Center for Education found temporary space for its students in three separate locations. Jaco’s class is here, in borrowed rooms at a Healdsburg Elementary School. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The older students will come here. The rest will be split between two other schools in the county with classrooms to spare.\u003c/p>\n\u003cp>The school’s team of therapists will split up too, so each site will be staffed all day. The only rover will be Larry, the golden retriever Labrador mix. He’ll make his rounds with Principal Heidi Adler. And yes, his bed did burn. But he seems to be doing ok. He sits on his hind legs and gives Bailey a hug. Then, on command, he speaks and executes a perfect twirl.\u003c/p>\n\u003ch2>School Starts\u003c/h2>\n\u003cp>Just before Halloween, school starts up again. Jaco’s class and two others are in borrowed space in Healdsburg for now. A counselor spent the morning talking to students about what they’ve been through. Now they’re making art.\u003c/p>\n\u003cp>A few kids listen to music on headphones. One hums. Jaco sits near the front of the classroom, drawing a picture of a dog that looks a lot like his. She’s been staying with a pet sitter since the fire, and Jaco really misses her.\u003c/p>\n\u003cp>Anova staff tried to replicate the students’ old classroom as much as possible, down to the posters on the wall and the type of box that holds the headphones. All the Chromebooks and textbooks, every single pencil and paper folder, everything had to be replaced.\u003c/p>\n\u003cp>Outside, the kids mill around in the unfamiliar parking lot, waiting for a ride home. Jaco’s teacher, Alicia Honn, says the new space is an adjustment.\u003c/p>\n\u003cp>“We had more tables in the back so they could spread out, and a nice library, and the nook in the back with big bean-bag chairs,” she says.\u003c/p>\n\u003cp>But for these kids with autism, just getting back to routine is a huge relief.\u003c/p>\n\u003cp>“You could just feel the positivity from all of them, just seeing their friends and seeing their teachers,” she says, “and just being like, ‘ahhhhhh, normalcy.’”\u003c/p>\n\u003ch2>A New Home\u003c/h2>\n\u003cfigure id=\"attachment_11635603\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-11635603 size-medium\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jaco Sodhi plays video games in early December at his newly-rented house, in Healdsburg, not far from his temporary school. On Oct. 9, the Tubbs Fire destroyed his home and his school, the Anova Center for Education, both in Santa Rosa. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In a stroke of luck, Jaco’s family finds a rental house through a friend. And it happens to be in Healdsburg, just a few miles from Jaco’s temporary school.\u003c/p>\n\u003cp>He and Sofia celebrate their 12th birthdays there in mid-November. By early December, they’re just starting to get settled. The kids have new beds. And the landlord has loaned the family some furniture, a big TV, and plenty of games. Jaco’s playing Star Wars: The Force Unleashed when his father Raj Sodhi tells him his screen time is over.\u003c/p>\n\u003cp>“Nooooooooooo,” he protests, before helping to set the table.\u003c/p>\n\u003cp>He and Sofia show off the library of books – also on temporary loan from the landlord. But it’s been hard to settle into a new routine. Jaco’s mom and dad have longer commutes now, because their old office was smoke damaged. They’re overwhelmed with fire recovery: meeting with builders, dealing with insurance, hunting for a new car to replace the burned one. With so little time, they had to cancel Jaco’s weekly meetings with an outside psychologist.\u003c/p>\n\u003cp>Over dinner, Jaco says he’s warmed up to his temporary school. He likes the playground.\u003c/p>\n\u003cp>But he may not be playing there much longer. Anova could reopen at the old location as soon as next month -- in portable classrooms, while the school awaits a full rebuild.\u003c/p>\n\u003cp>Meanwhile, some things in Jaco's life are already back to normal – like old-fashioned twin rivalry.\u003c/p>\n\u003cp>Ogling a shelf full of video games, Jaco boasts that he’s the only one in the house who knows how to work the home entertainment system.\u003c/p>\n\u003cp>“Not anymore,” Sofia practically yells with happy defiance. “I figured it out.”\u003c/p>\n\u003cp>“Wait, what?” Jaco stammers, foiled. “Do you even know how, you know how to turn on the TV?”\u003c/p>\n\u003cp>Her yes leaves him deflated. But then he’s on to the next thing, chattering away.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>A version of this story originally aired on KALW’s \u003ca href=\"http://kalw.org/post/after-fires-north-bay-school-autistic-children-seeks-new-normal#stream/0\" rel=\"noopener\" target=\"_blank\">Crosscurrents\u003c/a>.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Jaco Sodhi and his family are learning to cope after their home and Jaco's school for autistic children burned down.","status":"publish","parent":0,"modified":1512856148,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":59,"wordCount":2221},"headData":{"title":"After the Fires, North Bay School for Autistic Children Seeks a New Normal | KQED","description":"Jaco Sodhi and his family are learning to cope after their home and Jaco's school for autistic children burned down.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"After the Fires, North Bay School for Autistic Children Seeks a New Normal","datePublished":"2017-12-09T00:28:58.000Z","dateModified":"2017-12-09T21:49:08.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11635561 https://ww2.kqed.org/news/?p=11635561","disqusUrl":"https://ww2.kqed.org/news/2017/12/08/after-the-fires-north-bay-school-for-autistic-children-seeks-a-new-normal/","disqusTitle":"After the Fires, North Bay School for Autistic Children Seeks a New Normal","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcrmag/2017/12/AutismSchool.mp3","nprByline":"Lee Romney","path":"/news/11635561/after-the-fires-north-bay-school-for-autistic-children-seeks-a-new-normal","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>For the 120 students at Santa Rosa’s Anova Center for Education, the past two months have been tough. \u003c/p>\n\u003cp>The fire that raged through wine country \u003ca href=\"https://ww2.kqed.org/news/2017/10/12/fire-destroys-santa-rosa-school-for-students-with-autism/\" rel=\"noopener\" target=\"_blank\">burned the school down\u003c/a>, and nine families lost their houses, too. This school for high-functioning kids with autism was a home away from home for them. One 12-year-old boy takes us on the journey to recovery, for him and his school. \u003c/p>\n\u003ch2>Unsettled\u003c/h2>\n\u003cp>On a mid-October morning, not long after the Tubbs Fire destroyed his home and school, Jaco Sodhi sits down to play the piano at the Santa Rosa home of family friends. He, his twin sister, and his parents are staying here – for now. It’s the fourth place they’ve landed since the disaster upended their lives.\u003c/p>\n\u003cfigure id=\"attachment_11635595\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-11635595 size-medium\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28350_IMG_5926-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Raj Sodhi helps his son, Jaco, with a piano lesson on Oct. 21 at the home of a family friend. It’s the fourth place they’ve stayed since the North Bay fires destroyed their home — and Jaco's school, the Anova Center for Education. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Jaco’s playing from memory because all his sheet music burned. His dad, Raj Sodhi, helps him work through a piece of music. It helps them feel a little bit normal.\u003c/p>\n\u003cp>The family had to evacuate their own home not far from here in the early hours of October 9. Jaco’s dad, who plays jazz, loaded his double bass into the family minivan. His mom, Lucia Cascio, a portrait photographer, grabbed her camera bag. And his sister, Sofia, managed to take her trombone.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Jaco ran out of time. He left without much besides his Star Wars shirt — the one that’s got Darth Vader on it playing baseball with a light saber. He says it all happened too fast.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>“My sister said, ‘We are evacuating, Jaco, just get out of your dang bed' — yeah my sister was cruel that way — and I was able to grab, literally my toothbrush, toothpaste and only one pair of clothes.”\u003c/p>\n\u003cp>Jaco’s pretty unhappy about that. The family thought they were just being cautious, that they’d be able to return soon. But their house, and everything in it, burned down.\u003c/p>\n\u003cp>“If I could have grabbed more,” Jaco says, “I probably would have grabbed all my fencing gear, which costs like hundreds of dollars.”\u003c/p>\n\u003cp>Jaco’s got big brown eyes, braces and a very rational mind. He was diagnosed with autism when he was three-and-a-half years old. Kids on the autism spectrum don’t tend to do well with big changes — and a lot is up in the air for him right now.\u003c/p>\n\u003cfigure id=\"attachment_11635597\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635597\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28348_IMG_5876-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Raj Sodhi helps his son, Jaco, with a piano lesson on Oct. 21 at the home of a family friend. It’s the fourth place they’ve stayed since the North Bay fires destroyed their home — and Jaco's school, the Anova Center for Education. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>He puts on a good face, but he’s clearly struggling with his feelings. He talks about riding an imaginary lion into his devastated neighborhood — to chase off looters. And he tells his mom — three times — how mad he is “that I was able to grab, basically nothing.\"\u003c/p>\n\u003cp>The rental housing market here is so tight that Jaco’s parents have even been talking about leaving the county. Jaco says “necessity beats friends” so he’ll go if he has to. But his mom says the upheaval is taking a toll.\u003c/p>\n\u003cp>She explains how low he seemed after two recent tours of other schools for autistic kids in San Mateo and Contra Costa counties, saying the thought of changing was “heavy for him.”\u003c/p>\n\u003cp>Jaco interrupts. “We’re probably not gonna change schools,” he asks, “are we?”\u003c/p>\n\u003cp>Cascio tries to soothe him.\u003c/p>\n\u003cp>“We’re trying really hard to stay here, right?” she says. “That’s what mommy and daddy are trying really hard to do.”\u003c/p>\n\u003cp>“Got it,” Jaco says, sighing heavily. “That’s what I was just waiting to hear, that we’re actually trying to stay and we’re not just trying to move away.”\u003c/p>\n\u003ch2>Transformation\u003c/h2>\n\u003cp>To understand just how hard this is, it helps to know what things were like for Jaco before Anova. He spent kindergarten, first and second grades at a public school, but he struggled.\u003c/p>\n\u003cp>Cascio says there were instances when Jaco was aggressive with his peers, “pulling down the shelves in the library where they were trying to keep him away from the other kids, and it was just getting worse and worse.”\u003c/p>\n\u003cp>The whole time, she and her husband were pushing to find the right classroom environment and behavior plan for him at his public school, but Jaco started having suicidal thoughts. And his outbursts were regular.\u003c/p>\n\u003cp>Sofia, Jaco’s sister, says it was hard to see how misunderstood he was.\u003c/p>\n\u003cfigure id=\"attachment_11635599\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635599\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28349_IMG_5910-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jaco and Sofia Sodhi, who are twins, relax on Oct. 21 at the home of a family friend. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Kids would approach her, “not as Sofia but, like, ‘You’re Jaco’s sister,” she says. “‘You’re the one who’s related to the guy that pulled my hair’ or something. It’s like: No! He’s Jaco. He’s not just a hair-puller. He can learn stuff.”\u003c/p>\n\u003cp>When Jaco got to Anova, everything changed. He speaks softly when he talks about it, gazing down at the table. It’s clearly painful.\u003c/p>\n\u003cp>“They weren’t treating me as if I was a bad person,” he says, “for like the first time in a while ... It hasn’t happened in a while for me.”\u003c/p>\n\u003cp>Anova’s students come from as far as 80 miles away. Like Jaco, most are referred by their public school districts, which cover the costs. When Jaco got in, he skipped a grade. And his outbursts? They dwindled to almost nothing.\u003c/p>\n\u003cp>The kids can leave class whenever they need a break. There are quiet rooms for calming down, rooms where they can jump on a trampoline or swing, to help stimulate their vestibular systems. Plus, counselors to talk to. And there’s a therapy dog, named Larry.\u003c/p>\n\u003cp>Jaco loves his Larry breaks. Sometimes, he grabs some of Larry’s toys and plays with him. He gives him belly rubs. And he likes to “just flop his ears around.”\u003c/p>\n\u003cp>“Most of the time he just sleeps on his bed,” Jaco adds, “which hopefully wasn’t, which probably might have been burned in the fire.” He pauses. “Hopefully wasn’t.”\u003c/p>\n\u003ch2>Finding Temporary Space\u003c/h2>\n\u003cp>Andrew Bailey is Anova’s CEO and director of educational services. He also co-founded the school 17 years ago. As a therapist, he had come to realize that high-functioning kids with autism, the ones who often test at grade level, were falling through the cracks.\u003c/p>\n\u003cp>“All of us really started understanding that the students like the ones we serve are not misbehaving because they're bad or manipulative, and that is a game-changer for our students,” he says in an interview at the school’s administrative offices, which didn’t burn. \u003c/p>\n\u003cp>“They're understood and they're addressed with sensory sensitivity.”\u003c/p>\n\u003cfigure id=\"attachment_11635601\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635601\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28351_IMG_6015-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Andrew Bailey, Anova Center for Education’s CEO and co-founder, surveys the charred remains of his Santa Rosa school, which serves high-functioning kids with autism. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bailey knows that sensitivity will be more important than ever when classes start up again.\u003c/p>\n\u003cp>“They do understand the dangers in life,” he says, so when something like a fire comes along, the stresses in the students’ lives become exacerbated.\u003c/p>\n\u003cp>The school’s therapists know all that, and when school gets back in session, Bailey says, they’ll be ready to help students like Jaco assess how they’re feeling and calm down using techniques such as \"breathing and imagination and rationalization.”\u003c/p>\n\u003cp>Anova was able to lease extra space in its administrative building, and a suite of rooms in a new wing is buzzing with teachers and therapists finishing lesson plans and ordering supplies.\u003c/p>\n\u003cfigure id=\"attachment_11635602\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11635602\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28373_IMG_6115-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Anova Center for Education found temporary space for its students in three separate locations. Jaco’s class is here, in borrowed rooms at a Healdsburg Elementary School. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The older students will come here. The rest will be split between two other schools in the county with classrooms to spare.\u003c/p>\n\u003cp>The school’s team of therapists will split up too, so each site will be staffed all day. The only rover will be Larry, the golden retriever Labrador mix. He’ll make his rounds with Principal Heidi Adler. And yes, his bed did burn. But he seems to be doing ok. He sits on his hind legs and gives Bailey a hug. Then, on command, he speaks and executes a perfect twirl.\u003c/p>\n\u003ch2>School Starts\u003c/h2>\n\u003cp>Just before Halloween, school starts up again. Jaco’s class and two others are in borrowed space in Healdsburg for now. A counselor spent the morning talking to students about what they’ve been through. Now they’re making art.\u003c/p>\n\u003cp>A few kids listen to music on headphones. One hums. Jaco sits near the front of the classroom, drawing a picture of a dog that looks a lot like his. She’s been staying with a pet sitter since the fire, and Jaco really misses her.\u003c/p>\n\u003cp>Anova staff tried to replicate the students’ old classroom as much as possible, down to the posters on the wall and the type of box that holds the headphones. All the Chromebooks and textbooks, every single pencil and paper folder, everything had to be replaced.\u003c/p>\n\u003cp>Outside, the kids mill around in the unfamiliar parking lot, waiting for a ride home. Jaco’s teacher, Alicia Honn, says the new space is an adjustment.\u003c/p>\n\u003cp>“We had more tables in the back so they could spread out, and a nice library, and the nook in the back with big bean-bag chairs,” she says.\u003c/p>\n\u003cp>But for these kids with autism, just getting back to routine is a huge relief.\u003c/p>\n\u003cp>“You could just feel the positivity from all of them, just seeing their friends and seeing their teachers,” she says, “and just being like, ‘ahhhhhh, normalcy.’”\u003c/p>\n\u003ch2>A New Home\u003c/h2>\n\u003cfigure id=\"attachment_11635603\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-11635603 size-medium\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/10/2017/12/RS28374_IMG_6131-qut-520x390.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jaco Sodhi plays video games in early December at his newly-rented house, in Healdsburg, not far from his temporary school. On Oct. 9, the Tubbs Fire destroyed his home and his school, the Anova Center for Education, both in Santa Rosa. \u003ccite>(Lee Romney/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In a stroke of luck, Jaco’s family finds a rental house through a friend. And it happens to be in Healdsburg, just a few miles from Jaco’s temporary school.\u003c/p>\n\u003cp>He and Sofia celebrate their 12th birthdays there in mid-November. By early December, they’re just starting to get settled. The kids have new beds. And the landlord has loaned the family some furniture, a big TV, and plenty of games. Jaco’s playing Star Wars: The Force Unleashed when his father Raj Sodhi tells him his screen time is over.\u003c/p>\n\u003cp>“Nooooooooooo,” he protests, before helping to set the table.\u003c/p>\n\u003cp>He and Sofia show off the library of books – also on temporary loan from the landlord. But it’s been hard to settle into a new routine. Jaco’s mom and dad have longer commutes now, because their old office was smoke damaged. They’re overwhelmed with fire recovery: meeting with builders, dealing with insurance, hunting for a new car to replace the burned one. With so little time, they had to cancel Jaco’s weekly meetings with an outside psychologist.\u003c/p>\n\u003cp>Over dinner, Jaco says he’s warmed up to his temporary school. He likes the playground.\u003c/p>\n\u003cp>But he may not be playing there much longer. Anova could reopen at the old location as soon as next month -- in portable classrooms, while the school awaits a full rebuild.\u003c/p>\n\u003cp>Meanwhile, some things in Jaco's life are already back to normal – like old-fashioned twin rivalry.\u003c/p>\n\u003cp>Ogling a shelf full of video games, Jaco boasts that he’s the only one in the house who knows how to work the home entertainment system.\u003c/p>\n\u003cp>“Not anymore,” Sofia practically yells with happy defiance. “I figured it out.”\u003c/p>\n\u003cp>“Wait, what?” Jaco stammers, foiled. “Do you even know how, you know how to turn on the TV?”\u003c/p>\n\u003cp>Her yes leaves him deflated. But then he’s on to the next thing, chattering away.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>A version of this story originally aired on KALW’s \u003ca href=\"http://kalw.org/post/after-fires-north-bay-school-autistic-children-seeks-new-normal#stream/0\" rel=\"noopener\" target=\"_blank\">Crosscurrents\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11635561/after-the-fires-north-bay-school-for-autistic-children-seeks-a-new-normal","authors":["byline_news_11635561"],"programs":["news_6944","news_72"],"categories":["news_18540","news_457","news_8","news_356"],"tags":["news_980","news_21773","news_474","news_17286"],"featImg":"news_11635594","label":"news_72"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. 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Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. 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You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. 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