2/02/2015

When your child is a burden...

After three years our Max has racked up enough “serious” diagnosis that we can comfortably say that he will probably need some sort of assistance well into adulthood. Maybe forever. Only time will tell exactly how independent he can be, but we have low expectations. In the three years since he was adopted, our little guy has progressed one year academically. At nearly 11 years old, he reads, speaks and writes like a six year old.

Which leads me to reexamine my personal views on what it means to be tied indefinitely to someone with special needs. I’ve been thinking about this a lot this week. How I used to view families in my situation, and I keep coming back to the same word.
Pity.
I used to pity those families. The families that have little to no hope for one of their own. For how devastated they must have been each time bad news came in. As they watched their bar of expectations sink lower and lower, until they finally stopped expecting things from their child. When they finally realized their loved one would never be much more than a burden to the rest of us.
So if you’ve ever thought that about my situation, stop. Right now. I don’t want your pity.
Here’s why.
In the past when I felt pity for another family with a special child, it was because I personally didn’t recognize that special child as holding the same value as a typical developing child. Like he was a lower class citizen because he would never be on the same playing field as the typical kids. Clearly being burdened with a lower class citizen is a reason to be pitied. Right?
Then that burden became my child. That lower class citizen became a member of my family. And my perception changed. Imagine that.
How could I possibly have held someone else’s special kids to a lower value? How am I ever going to say to myself that one of my children is worth more than another? Because one will excel and the other won’t?

What are you thinking woman? It’s never ok to evaluate another person’s worth for any reason. Ever. Sweet Jesus you’d think I’d know that by now.
Having a special kid isn’t devastating. It’s not a burden. It’s really just sort of normal. It’s different, yes. But you learn. As with anything you fall into a rhythm. A routine.
And our situation is different anyway. While it is true Max is adopted, it should also be remembered that we didn’t adopt a special needs child on purpose. We knew Max before we made our decision to include him in our family. We thought he was a normal kid.
Would our situation have changed if we’d had an accurate list of diagnosis before we signed up? Maybe. But I’m not going to dwell there. Because you don’t get to pick whether your children are healthy or not. The end.
So do I know what the plan is for Max? No. Is my plan to bend over backwards to get him the best education he can get to maybe eek out another IQ point. Not really. I’m sort of ok with the idea of having a son who stays six for the rest of his life. Because in the end it doesn’t really matter.   
If we hadn’t spoken for him he would have been cast out on the street at the age of 18 with all the others. Aside from the fact that he now has parents who'll fight for him; being an American citizen qualifies him for so much more assistance than he ever would have gotten if he’d stayed in Russia. My son is not going to die on the street alone and afraid because there was no one to help him.
So really, it doesn’t matter what the plan is. My kid has already beaten the odds.

1 comment:

Natalie Busch said...

This is really good. I love hearing your heart for your son and even opening up about how you used to see things. I can relate. I am sure many people can.

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