Voluntary isolation

After attending a conference where parents of some of the students share their stories, I realize we have something in common - isolation.

Speaking for myself and my personal situation with my boys, I relate to this. There are many events that my husband and I avoided early on with Kelly's diagnosis. We were constantly told by people we were being overprotective of Kelly. People judged us and made comments.
"Oh, he's just being a boy."

"How's he gonna learn if you don't take him?"

"Just deal with it."

That has always been my favorite. Just deal with it.

Such a simple demand. But are those advising us on just dealing with it don't ever have to plan quick and painless exits when something sets Kelly off. And not just screams, but BLOOD CURDLING screams over something as simple as a toy not having batteries. He KNOWS that toy makes noise, since he has the EXACT same one at home, but because the mother of this child doesn't like noise, she doesn't put batteries in this toy. So Kelly screams, screams, and screams some more. We finally have to leave.

Then people say we spoil him. What do you do in a situation like this? Hit him? Not how we're handling him, thank you.

He's removed from the situation away from everyone's noise and shouting about 'shutting his ass up' into the car, enroute home to relax with the noisy toy he wants so desperately to play.

How about just dealing with this kind of behavior 2 hours away from home? Are you the one who has to deal with him having a meltdown over anything....bad lighting, weird smells, different people, or a new environment...and have to drive a screaming child 2 hours away?

Without using the word, we slowly became 'isolated' from our family and potential friends. We stay close to home to avoid judging eyes when our son melts down.

Over the years, the meltdowns have subsided. But there are still moments. Kelly and Jesse are on the spectrum, but at varying areas. They may speak autism, but it's like Italian...not the correct dialect. Every area has their own way of saying things that the other cannot understand. And at their ages, they don't want to understand.

Again, we have to take caution during the holidays and accommodate Kelly with his issues - although not as severe, still happen. And with Jesse and his food issues. Either bringing him his own jelly sandwiches or pizza, or having our host/hostess accommodate him and search for the last few slices of bread and a jelly that may or may not be grape, and having to give him the last of the milk, unless we bring our own.

I felt a great sense of relief today when those parents shared their stories about how they felt isolated from the world. I didn't feel so alone anymore.

Ironic, isn't it?