This year’s Christmas card came out a little dark, but I love the pictures anyway:
Last week when I drove down to see Jonah, there was a mix-up at the Visitor’s Center and both rooms were occupied, so we made do by having our dinner in the 2nd floor conference room. Briana was there to help, and the room had napkins, chairs, a table, and my phone to provide the tunes – so we had everything we needed. This time Boo wanted to dance, and he pulled me up to bop around as he grinned and giggled. It’s always so awesome to see him happy. He must have said thank you 3 or 4 times – for handing him my phone, for giving him a drink, for opening the blue cheese container…and each time it feels like a precious thing. Spontaneous language of any kind is special, and I know it took a lot of work to teach him. After dinner we took a walk in the dark and cold, and I couldn’t help but wonder how much longer he’ll be at Anderson. On March 7th he’ll be 21, and he’ll graduate in June.
I’m told he’s on a special list for kids aging out who are not currently being considered by any agency, and there’s a meeting soon about that. Jonah can stay at Anderson if he needs to, and it looks like he will need to, at least for a while. As Jonah and kids like him get older, there will be fewer and fewer spots for adult housing and day programs. Openings are few and far between. I used to think I’d do a lot of research and then Andy and I would choose the best possible placement for Jonah, but it doesn’t work that way.
There’s a portion of the disability community who vehemently insist that all people with disabilities can and should live independently, in their own residence, in the community. I’m not sure if they simply refuse to acknowledge people like Jonah or if they really believe all necessary supports will be provided to enable someone like him to live at home. After all, it’s just me here. I’d need 3-4 strong DSPs (direct support professionals) in my home pretty much 24/7, and that’s not on the menu, even if I had a big enough house to hold them all. If I did, and if I could, I’d love to have Jonah living with me again. I’m amazed at how much it hurts sometimes, even after 11 years, to live apart from him. Mainly I want him to live as happy and fulfilled a life as possible.
I’ve joined the National Council on Severe Autism‘s National Grassroots Network (NGN). To quote NGN, “We exist to help ensure that policymakers tackle autism as an urgent national priority — and are fully informed about the realities of autism and challenges faced by families across the country. We in the NGN will operate in all 50 states and across all congressional districts to emphasize the needs of the rapidly growing population of children and adults who need continuous support, and often, specialized services.” I’m thrilled and grateful to be a part of an organization that finally addresses the needs of individuals like Jonah.
You can see NCSA’s official positions on a variety of issues in its position statements covering topics such as guardianship, housing, language and more. I stand in agreement with them all.
For now we’ll move one step at a time into the future, thankful for Briana and the other DSPs and teachers at Anderson, who care for and teach Jonah every day.
Happy Holidays, everyone! I wish you all a blessed 2023 full of love and laughter.
The Never Normal 