Saturday, April 19, 2008


autism...
everyone knows someone who has a kid with it.
Maybe you have one, too.

Saw this on Motherhood is hard. Admit it.. truemomconfessions.com (beware: some of the confessions are NOT family-blog friendly...)

autism= a life sentence of wondering what my son could've been.

I have looked at Jonathan and wondered, "What if he were normal (typical/not affected with either Fragile X or autism)?" What would he be like? At almost 20, would he still be living at home? Would he have a girlfriend? Would he wear his hair long, steal $20's out of my purse and roll his eyes at everything I said?

I don't know these things. I do know that he is the way he is. Sometimes, that frustrates the living batcrap outta me. Seriously....Many days, my life can be reducued to one word: repetition. Repeating the same instructions/words/remark over and over and over and over.......

You get it. Maybe you don't.

Sometimes, I meet other Moms (who I secretly think have perfect lives but I know they don't) and they look at my life, my kids and they say, "Oh Suzanne, you're so brave......"

Let me say this VERY loudly: I am NOT brave. I am not a firefighter who runs into a burning building. I didn't ASK for this. I didn't volunteer. I was punched in the gut when I got the news that my son, my beautiful then-almost 3 year, would never grow up. My sister was pregnant when I got the news and I knew it would ripple through our family like a genetic tidal wave. That might sound dramatic but that's exactly what happened.

But I didn't ask for this. I don't walk around saying, "Oh look at me. Pity me, I have "special" kids. I have it hard." I live my life. I wake up each day and try and not screw them up royally. I make mistakes. I learn along the way. Having a disabled child is not a punishment nor is it a badge of honor. It's just the way it is.

Today, we were in Wal-Mart, right near the WV border (where LOTS of odd people live) and someone made fun of Jonathan. He blew it off but I couldn't. I marched up to them and "educated" them. Probably not a Kodak moment for Fragile X & Autism awareness but I couldn't help it. He's fragile and beautiful and he's the way God made him. Don't pity him though. Just get to know him. He'll tell you knock-knock jokes. He'll say "Bless you" when you sneeze. He'll open your car door for you. He's a whole person.

I wouldn't change him. I couldn't. He wouldn't be Jonathan if I did.

3 comments:

FXSmom said...

I feel the same way. I wouldn't change my kids for anything. I had to laugh at "trying not to screw them up royally." I totally relate to that statement. Every day I just wing it and hope I did the right things for the kids.

Anonymous said...

Bat crap is two words....just ask Glenn Beck.

"Stand back from your stereo, Glenn Beck on the Radioooo"

SB said...

you're right: TWO WORDS.

Thank goodness I am not being graded on my spelling. I found two more errors.

But that's me: slightly imperfect.

Okay, more than slightly.

:)