Brian was lying on the couch watching Disney Jr. as I lay there rubbing his back and giving him deep compressions and ear pops. Yes I was doing all of those things at once, takes years of practice of calming a boy after sensory overload.
We were in the middle of a cook-out at a house that we had never been to before. The hostess was kind enough and knowledgeable enough (being an ed tech with children with special needs for years) to offer us free reign of her home, “whatever you need for him to be comfortable.”
I wasn’t happy with sitting in the middle of the livingroom as the party continued on outside. I felt a tiny bit ridiculous as it was a new group of people that I was trying to make a connection with and instead I felt like we were ostracizing ourselves once again. Autism is a funny thing in that it makes the whole family become secluded, not just the individual that needs the quiet and routine to feel at peace.
I honestly was feeling sorry for myself. I felt like I shouldn’t have come, I had made it known that this was going to be a difficult situation. I was upset because on top of the sensory overload Brian was experiencing he also needed to have a bowel movement and that was making him more cranky. I couldn’t leave him alone in the house, like I would’ve been able to do with most other 8-year-olds, because I was worried he was going to roam into the bathroom and have the said bowel movement and then clean himself on the walls, towels, and whatever else he could get his hands on. Because that’s the reality of where he is still at with bowel movements. Generally he won’t have a bowel movement anywhere but home but I wasn’t going to rely on that.
Then Corbin walked in and plopped himself in front of the television.
I looked at him and said, “Corbin, please go outside and play. We’re at a cook-out, you do not need to sit in front of the television.”
“But Brian is!!”
“Brian is having a hard time and he needs this to just chill for a little bit. We’ll be back out in a minute.”
“It’s not fair! I wish I had autism!,” he muttered under his breath as he stomped his feet back out towards the door.
It’s not fair. None of it is fair. We’ve had this argument time and time and time again and my heart doesn’t stop breaking for both of them, and for myself time and time again. Again and again I feel like I’m failing my children because I can’t always see autism as a blessing like I see other parents doing. Again and again I find myself wishing it away. And again and again I feel like I’m leaving Corbin behind to figure things out for himself as I struggle to make the world an easier place for Brian.
Does this get easier? I just feel like I continue on through this cycle of acceptance and grieving over and over again, never really finding myself at the place that I am okay that this is my life. Go ahead and criticize me because of some stupid idea you have that if I don’t fully accept autism that means I don’t love my child. Any one who knows me and my boys would never question how much I love them. My love for them does not stop me from just wanting and wishing that we could have a life where we could go to a cook-out and I could sit back, have a drink, make new friends and laugh, and watch my boys running and playing with the other children. Just one afternoon with my whole family and not have to worry and be on my guard and have to watch my child every second of the get-together. That’s what I wish.