I’ve been wanting/trying to write this post for awhile now but just couldn’t do it. Or didn’t want to. Could be part of denial and just not wanting to face what is right in front of me…but there it is.
I like to think that we can live our life like most normal families. Do things that other families do.
But I really think I’m fooling myself. And it breaks my heart.
It breaks my heart because I know that at one point we were that family. Living with autism, but it wasn’t what defined us or him. He was pretty indistinguishable from his peers when he was younger – which makes sense as his developmental gap wasn’t as big back then.
The things he did at 3 or 4 years of age were far more acceptable then in contrast to when he does them now at 8 years of age.
We can’t go to Cam’s hockey games as a family because he runs away. He never used to do that.
We can’t take him shopping because he runs to the toy section and melts down if he doesn’t get something. I can’t say yes all the time. He never used to do that.
We can’t walk to school because he refuses walk.
Somedays it feels like every single interaction with Cuyler is a conflict. Those days I want to quit and sometimes I wonder if I already did.
I remember an occupational therapist came into his kindergarten classroom for an observation about 3 years ago. She couldn’t pick him out and had to be told who he was. I loved hearing things like that and I heard them often. How well he blended in and was a part of the class.
Now he’s the kid skipping back and forth, flapping his hands and stimming vocally. Looking totally the part of the autistic child. I watched him do it yesterday at school and it made my heart hurt.
I see the pages that come home in his link book letting parents know what units are coming up and what the class is working on next and there it is – right in my face all the things that he is NOT doing. His IEP just gets more and more added to it each year.
I was so optimistic that he would be ok. Not “normal”, but I definitely would not have predicted we would be dealing with the all of the behaviours and issues we are dealing with currently. He was doing so great. And everybody told us. We would hear “Oh I wouldn’t even have known if you hadn’t told me”
Nobody says that anymore.
I can’t help but think that I’ve let so much time pass to resolve a lot of it that he will never be independent. Never have real friends. Never be able to regulate his emotions. Four years ago I didn’t question that any of that would happen.
We used to tell people that his biggest deficit was the social deficit. He loved being with other kids, but just didn’t know how to relate to them. Now I think he could care less about being around anyone. He’s content to sit on the iPad, laptop or his portable dvd player and watch videos. We now have to hide away all the electronics until after he goes to bed and trying to engage him during those hours is exhausting. He just resists and runs away or shouts at us to “Go away!”
He makes his therapy almost impossible to implement because he resists or outright refuses.
Now his deficits are sensory, behaviour, social and cognitive.
I haven’t even touched on his diet/nutrition. That is a huge source of stress for me.
Also – having family members tell you that a lot of the issues could be curbed if we just said “no” more often and that a lot of it is parenting/discipline – or lack thereof is insulting and offensive. They have old school mentality and don’t understand that his BRAIN doesn’t work the same and he cannot process or respond the way we would like him to.
Just more shit to deal with on top of the shit that we deal with on a hourly/daily/weekly basis while trying to live our life with autism.
I don’t know that Sean feels the same sense of…dread(?)…that I often feel (about the future). I think he gets so much fulfillment as a parent being so involved in Cam’s hockey that he feels less of an urgency to get on track, recommit and try to get Cuyler on a better path.
It’s so hard having 2 other kids that also need 100% of us. I just can’t find the balance that I need to do it and am at a loss at even where to begin.
I try my best to be positive and project that but I am human and can’t always do it.
I feel overwhelmed. I am disappointed. I am terrified.
There. I said it.