If it’s semi-independent or assisted living for young autistic adults, not only will they come, but apparently they’ll already be lined up around the block, begging, beating the door down. There is no waiting for anyone to “come”. People…parents…are desperate. There’s beginning to be a scattering of information on the internet…organizations who advocate for housing, employment opportunities, etc., for these children who soon won’t be children any more. There are articles with links to other articles, and every so often, a few videos of parents who have seized a circumstance and figured out a house or a job for their child. One. One that works for them…their income, their resources, their location, their state funds, their relationships. It’s amazing and beautiful…but it doesn’t translate to me. Or CJ.
What are WE going to do? And if we can figure that out, is there a way to consolidate it? Box it up? Strip it down? Make a master template that will work for anyone?
I met a woman who told me that when her son leaves on the bus for school, she runs out the door to go…anywhere. Anywhere at all. She will go sit at Panera by herself so that she can get out of the house. She is dreading next year when he is too old to go to school and she won’t be able to leave. While it is not a prison or a sentence, it feels that way. How, after all this time and work and effort, could it feel like it’s getting worse…not better?
I think the worst part is how much these parents love their kids. This is not to say in any way, shape or form that other parents do not love their kids as much, but with autism, you have to fight for every little thing with these kids. The intensity of the love may be similar, but the bonds are shaped sometimes very differently.
Seven years after CJ, my healthy typical daughter was born. When she started kindergarten, I pulled up to car line to take her into her first day at public school. 800 other parents walked their kids in that special morning, but my daughter had been waiting for so long to get dropped off in car line like her brother that she insisted.
I dropped her off at 8:05AM and came back at 3:05PM and picked her up. That was it. What?? What do you mean that is it? I was confused. Where is the notebook with the explanation of her day? When are the meetings scheduled? When do we go over curriculum? When do I explain to everyone her strengths and weaknesses? Nope. Nada. All we had was curriculum night along with every other kid in her class.
Don’t get me wrong. She thrived. She loved school and made tons of friends. She will go to high school, learn to drive and go to college. She will eventually get a job and move out.
No one told me it could be like this.
And so….it begins. CJ needs a place of his own…a place to share with a few friends like him…a place to live with as much dignity and independence as we can find a way to give him. That place doesn’t exist. Yet. So…how to build it? Where to start?
The first steps are to take everything I can find so far…everyone’s information about everything they have thought of, researched, toured and dreamed of, and then try to sort it out, document it and figure out what will work for us.
I am hoping that this blog will be a guide, a reference and an inspiration to anyone who passes through here. I don’t have the answers yet, but I’ll try to document our journey every step of the way. Perhaps the solutions to funding and building a house for CJ will be the prototype for something larger. I have meetings scheduled, a business plan in the works, an attorney and a CPA lined up, and some good leads on design and funding. This could be big or it could be really small. Either way….
It’s all starting with a house.