My biggest fear is the future. Not necessarily my future. But Brian’s future. The not knowing part of his future.
Every once in a while I read something or I see something that just sets me into an anxiety attack.
Yesterday I had one of those moments.
I was at a residential home teaching the staff how to do a safe transfer for a person with an amputation into the shower.
The home wasn’t nice. It wasn’t particularly clean, it smelled, and it really felt like an institution to me.
Adults were walking around aimlessly, not talking to anyone or they were sitting in chairs staring at the television.
There was no happy vibe there. No interacting. It was eerily quiet for having over ten people milling around in a small area.
And I start to wonder what their stories are. Do any of them have autism? Did they choose to live here so they could have the independence they craved or did they not have family members who could continue to help them make a course through life?
I read an article today that said that for a child with autism to have a higher chance of being able to live independently as an adult, they need to talk by age six and have an IQ above 50. Brian is six. He talks. But he doesn’t talk functionally. Some days he’ll go all day without uttering a word. Some days he’ll sing me a song. He never really has a conversation with me, unless I can format it so all my questions are yes or no or I’m specifically asking him to label things for me. Brian’s had two IQ tests done (talk about anxiety- and anger, and sadness, and everything else you can think of)- and they both came out above 50- but not much higher. He’s really in a spot on the spectrum that makes it hard for me to predict what his future will hold.
I have always said that Brian will live with me forever. The plan is to buy a home that we are able to remodel to have an attached yet separate apartment. Yet, of course I dream that he will be able to live on his own and that he’ll want to and he’ll have his own hopes and dreams that I will encourage him to strive for.
The worst fear is my passing away and not leaving someone that will continue to care for him. And him ending up in a home like I was in yesterday. This train of thought is so draining and depressing, yet it could be a reality. It’s so important to plan for these special kid’s futures, yet almost impossible to know what they may hold.