Wednesday, December 9, 2009

The "N" word...

I cannot seem to make up my mind! I want so much for Maddie to be “normal” yet yesterday at her IEP meeting I got frustrated that they were referring to her as “normal” or “typical”…yet the words that followed are the ones that piss me off…”for a Downs Syndrome child”…should I not be relieved that FINALLY Maddie is “normal”! I hate that there are still no answers to how she will develop…is she for sure high functioning…and what does high functioning mean…does it matter…it ALWAYS comes back to will she drive?? I am still hung up on that! I really feel if she can drive she can do anything…she can go to college, get a job and be independent…I am not sure she would like me to have to drive her on her first date...yes! yes! I know she can do these thing with out driving…but for me driving was a right of passage…and I want that for her…I get so sad sometimes…especially after an IEP meeting…that this is our “normal” a community of people helping to raise our daughter…that we cannot do this on our own…that we need outside help to make the best life for our Maddie…I just hate when I get “well she is amazing”…she is… but she is not my “normal”…


  1. I think, maybe, there is a common thread between all new parents who have babies with Ds. For me, the invasion of "therapy" was overwhelming, and the sense of giving over my baby to "those who know best" undermined my confidence. Eventually, I asserted myself. I KNOW what is good for Gabe. And it turns out that I am right. I DO KNOW and therapy supports ME.

    The language of Down syndrome is one of my biggest bones of contention. At first, I was meek, when Gabe was a baby, and I accepted "Down's baby" and Down syndrome child. One woman described him as mongloid. I didn't say a thing. NOW, things are different. I don't hesitate to "educate" (which means set 'em straight). I may design a series of t-shirts with language ideas this spring to see if they fly because this topic is so dear to me. Language is so powerful that it has obscured the abilities and potential of a whole segment of society with developmental disabilities. I see this as the biggest area of change needed in the Ds community.

    Those catch-all phrases of "normal" and "typical" are tricky, too. I would love for Gabe to drive -- especially now that at 45 years of age, I am learning how and taking Driver's Ed. It's a "normal" thing to do, isn't it? The thing is that even if Gabe did not have Down syndrome, there are absolutely no guarantees that he would do the things in life that I wish for him to do.

    I remember my sister telling me something similiar when we first learned about Gabe having Ds. Her beautiful daughter, my niece, is 10 months older than Gabe. She was three months old when we found out that Gabe has Ds. Anyway, I was in such deep grief, I felt hopeless. But my sister said to me that there were no guarantees for Rachel's well-being in life. We are all human and frail to unforseen circumstance and yet we live most of our lives feeling immortal and purposeful. Why can't our children do the same, even if having Ds?

    Sorry, I tend to ramble and your posts inspire me. I like where I am right now. Gabe is 4 1/2 years old, and it's been a helluva journey so far. You're not alone...

  2. I just got Kheaven's IEP in the mail today. "Therapy" starts this coming Monday. I'm glad that they care and will be around to make sure that I have the knowlege to help him develop right, but I have been raising kids for five years now... part of me wonders why they need to come in. At his first meeting they seemed very impressed on how I interacted with him, and it's flattering, but it's the same as I have been with my other two children. Anyway, I'm rambling, what I mean to say is I understand how you feel.