Several months ago, I had to meet with a lady from our county board of DD about Casey and Rob’s waivers. She had pages of questions and I answered each the best I could, but …. I’ll admit, some of the questions hurt. I am constantly amazed by how far Casey and Rob have come since they were children and having to answer questions about their abilities wasn’t easy.
I know they need constant care. I know they need help with many things. I know they have no sense of danger. I know it isn’t safe for them to use appliances without total support. I know they can’t handle money. I see this stuff every day.
But – those questions were tough.
I know the questions were necessary to get Casey and Rob the support they need. I know that it was important. And I know I cried when it was over. It was a huge reminder of how much support they do need.
To me, they are just Casey and Rob. I know he needs help turning on the water or he’ll burn himself in the shower. I know she can’t wash her hair (we recently discovered that if Casey can’t see her hands, she can’t control them very well, such as to wash and rinse her hair.) I know when he’s anxious – I know when she’s getting overwhelmed. It’s just life to me.
When it came time to redo their ISP’s, it was even tougher. The ISP is supposed to be detailed enough that a complete stranger can read it and be able to care for Casey and Rob. I understand the idea and it’s probably a good one, but really? It would take a hundred pages of notes for me to tell anyone they schedules, their needs, their triggers, their anxieties, their likes/dislikes, their routines. But, I did the best I could and laughed to myself. There is simply no way anyone with autism can be contained to a form.
And when I do figure out their routines, they change. Just ask any parent who stocks up on their child’s favorite must-have food, only to have that child decide they no longer want it. Rob has done that to me many, many times. Luckily, he usually comes back to wanting that food.
It’s hard for any parent to see the delays their child has. It’s hard to sit and listen to everything they can’t do. It makes you question every decision you made – would they be better off today if I had done this or that?
But sometimes, the tough questions make me proud. Yes, Casey and Rob need constant supervision and support in all areas of their lives, but you know what?
They are happy. She is experiencing things and going places that even five years ago, I wouldn’t have believed. She will be singing in a talent show later this week (I cannot even imagine standing on a stage and singing to a crowd – that’s terrifying to me!) She went to a college football scrimmage over the weekend. He is venturing out of his comfort zone (With people he trusts) For the most part, their anxiety is under control. And we know how to alleviate their sensory needs.
So my advice to you is to let those tough questions remind you just how far your child has come. Yes, it hurts to hear the delays, but think back to other meetings and remember that the delays that were important then are the ones your child has overcome. Every small step forward is a reason to celebrate and be proud!
No one can tell you what skills your child will learn. No one can predict the future. Please don’t let the tough questions bring you down. Keep dreaming and reaching for the stars with your child!