There’s a lonely side to being a parent of a child with Autism that I haven’t talked about much. When I try t process it, I feel it comes from two places. 1. Feeling left behind while my mom friends celebrate experiences we may never have. 2. Feeling angry watching my child being overlooked or missed out on.
We went out to eat once and Caleb’s needs were best met by moving our place away from the group and eating within proximity but at a different table. No one brought their plates over and sat down and relocated their seats next to him. He was sensory seeking, he needed more space, but he did well. The point was he needed a small change in order to be successful but it was enough for him to end up lonely and on the outside at lunch.
Sometimes when we go places and go on visits, Caleb is more observed than interacted with. He may play a little differently, a little compulsively, have a problem with personal space, and be sensory seeking, but he tries. With other kids he can share and put his compulsions on hold. Even with things that are highly preferred. With adults he likes to comment and show off but even in those instances he mostly gets observed from the couch. It makes me sad to see people miss out on how freaking awesome he is. So, he plays alone. Which sometimes he truly prefers but other times when I know he’d like interaction, it’s painful to see him end up lonely.
It’s a hard feeling, this “Autism, party for 1” feeling. Someone asked me about us growing our family and I had to respond honestly that the desire to do so was partly influenced by Caleb. He needs more people that I can be certain are on his side. I need to know in a world where I’m not here, that he’s going to have a tribe.
We keep at it, though. We mingle, we venture out, we put ourselves out there. We hope to move our corner booth reserved for Autism to a seat at the head of the table right in the middle of the banquet hall one day as more progress is made. From where I’m sitting though, the view is pretty incredible.
Love an Autism,