Wednesday, April 12, 2006

Down syndrome is not good or just is.

I think our society has the tendency to sensationalize those things which are different. What is perhaps just a product of our humanity, is often seen as incredible if it is good, and as horrific if it is bad.

We are a society of “fixers.” And thank Heavens for that. It is to our advantage to keep our houses up, to maintain jobs, to do the daily chores which must be done.

Further than that, our quest to fix things has led to major medical advances in so many areas. Our life spans are greater now than they have ever been. We realize the importance of good nutrition and healthy exercise.

Although we sometimes refer to the “good old days” when people got their food from the land, and worked the fields for exercise, we clearly have a better ability to care for our health now.

Unfortunately, we sometimes look to fix things that are not broken. We cannot always accept things which we deem imperfect.

So…we get face lifts, and tummy tucks, and color our hair.

On a grander scale, we belief we can control our own destiny in our almost-perfect world. It becomes acceptable to reject that which is not perfect, and to strive for the best.

Prenatally, we are offered every test possible to ensure that “perfection” in our children. And we are offered choices when that perfection cannot be attained.

Recently, the topic of “fixing” children with Down syndrome has come up a few times in my every day conversation.

A couple of weeks ago, from a friend of mine who has a little girl with Down syndrome…someone she knows very well, and who loves her children dearly asked her if there wasn’t perhaps a pill that would “fix” her child…that would take Down syndrome away.

And, as it seems to come up every once in a while, the use of “supervitamins” and other nutritional supplements, including drugs that have not yet been studied, touted to take away the effects of Down syndrome has come up for me.

I have very definite opinions about the use of these supplements. Specifically, I have very definite opinions about the people who are marketing these supplements. They market the supplements with the belief that Down syndrome can be cured; that it is a disease that children are suffering from and that we OWE it to our children to fix them.

Without getting into a long explanation of these specific vitamins and their claims to help children with Down syndrome, I want to comment on the aspect of "fixing" Paige.

I have the obligation, and, indeed, the desire to provide Paige with the necessary things to help her reach her greatest potential. To that end, I did all of the typical things that pregnant Moms do...I had good prenatal care, I took care of myself, etc.

And because Paige comes with an extra chromosome, I've also done a few extra things...

I've enrolled her in various therapies, OT, PT, Infant Stimulation, speech therapies, etc. since she was a tiny baby. I've learned some basic sign language to facilitate her communication skills, and I've been very active in her school environment, making sure she has what I consider the best opportunities for her to grow and develop both socially and academically at school.

But, you know....thank God for Wayne too.

Because he makes sure I don't get frantic and crazy in my quest to help Paige. He takes the "just a kid" approach with her, and lets her do things that I shudder watching baseball and hockey, and occasionally even wrestling on TV, because it makes her laugh out loud. He teaches her to smack her forehead, and say "doh" just like Homer Simpson does. He even snickers with her when she lifts her butt cheek and passes gas.

In his own way, he is keeping me from building a "super child" based on my expectations. He understands that we really have nothing to prove...we don't have to have the smartest, fastest, tallest, greatest (well, maybe greatest!) kid with Down syndrome in the world.

We just need Paige.

And our obligations and desires for her go much further than pushing her to achieve everything, and then showing the world we did it.

She deserves her own humanity, just like the rest of us. She deserves the opportunity not to work on her letters tonight just because she doesn't feel like doing it. She deserves to be silly, and make us laugh, even when she knows she's doing something goofy like putting her shoes on the wrong feet on purpose.

Just as we cannot do it with Dakotah, we cannot create some sort of expectation and template of items that will make Paige "happy" or "successful" in this life...she has the right to create that template on her own.

And we have the great blessing of being able to cheer her on as she makes that give her the things she needs to design it, and then to beam with pride as we watch the final product emerge.

I don't need to fix her...not even a tiny bit. She's perfect just the way she is.


Tara Marie said...

So, so very true Betsy....I always think of Emma Sage just as that,,,she is who she is and her Down syndrome is not good or bad, it just is.

Give that man of yours a big hug from us for keeping the balance with you on raising that precious girl[s] of yours.

Tara Marie said...

and I'm still laughing about the Homer Simpsons stunt and the 'squeeking' them out comments....too funny!!!!

The Imperfect Christian said...

My husband brought home one of the booklets about these supplements shortly after DramaChild came to live with us. I immediately rolled my eyes at him and he thankfully didn't pursue it.

Our girls don't need to be "fixed" either. I think it's a natural inclination to want to do all you can do, but there is a line of reality. Desperation may cause some to cross it, but we try to remain realistic around these parts!

Another great entry!

Beth said...

I agree wholeheartedly!
I so appreciate those who treat Down syndrome as just what it is--a condition that requires a little extra work and time to learn and do things....not the greatest thing since sliced bread nor is it a tragedy. They are just our children, like the rest, with their own set of gifts and struggles, like the rest!
Thanks for this post--so true, so true!