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White-Sutton syndrome

Brain & Nervous System | Last Active: Sep 29, 2023 | Replies (29)

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@illinoismom

She was mainstreamed in school with the now fading 1:1 aide model before there was even a concept of paraprofessionals as aides. She earned an associate's degree (first time in school with out aide) from local community college in her 20's which took her six years-going part-time, getting an exemption for math, and ending up with a general degree. She works part-time doing shredding and collecting the items from offices to be shredded in a local developmental disabilities agency. She needs more work and more structure. Also volunteers at public library. This was at first temporary paying job during renovation of the library-never became permanent job as renovation money was overspent and several full time employees were actually laid off.She lives in her own apartment in subsidized (HUD-Section 8) housing with many supports from family and from staff through the agency where she works. She had to win a state lottery for the supports. Staff and parents transport her everywhere. She loves to swim. She does equestrian therapy--but only for part of the year when it is available. Vocational transitional services were not good when she was graduating from high school. When she was toddler through junior high the world didn't understand autism yet. On and off I always wondered what was underneath it all biologically. I have had people ask what difference it makes to know about the syndrome now. I believe knowledge is power and that the more research the better for us to know what to expect and how to help her manage as she ages.

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Replies to "She was mainstreamed in school with the now fading 1:1 aide model before there was even..."

@illinoismom - sounds like your daughter has accomplished a lot with her associate's degree, part-time job, volunteering and having her own apartment. Since White-Sutton syndrome has many features of autism spectrum disorder, I'd also like you to meet @mamacita and @gingerw, who have talked about their own autism on Connect.

Will you share more about the equestrian therapy your daughter is doing? How have you seen this impact her?