Below is how one mom deals with how her family views her child's disability. She has agreed to share this perspective with others in hopes it might help another family.
I say to my sister:
He can use all the prayers you want to pray for him.
We can all use all the help we can get.
I don't say "he's disabled and always will be".
I've enjoyed living in denial for almost 12 years.
Yes, he is disabled. But I focus on the abilities.
He's hearing impaired, but he can hear when aided.
Maybe I'm the only one who can understand him when he speaks, but he is speaking now. (and soon others will understand)
"They" told me his signs would always be unintelligible. But he can sign pretty well now. (Sign language)
"They" told me he wouldn't walk, or be able to use his hands. Sorry, wrong. He can ride a bike. (OK, his balance isn't great, and he still has one training wheel on at 11, but who cares?)
"They" said no resolution of seizures without a lobectomy (yep, lets
cut out his brain and see how he does), and you know what...
Another Dr put us on different meds, and the seizures stopped, and we
weaned the meds... and now are seizure AND drug free!
I could go on and on. (and usually do)
My mom still makes noise sometimes about how my family suffers
needlessly because of him. And she occasionally says he needs to be
in an institution.
I've just learned to smile and say: how's your new job?
My sister still prays for him (and I hope me, too).
My mother-in-law has masses said for him.
She also gave me a car to use and money for an apartment so we could
do HBOT. (did wonders for him, but that's another story...)
Your child is still young. I remember how hard it was at the beginning. Try to find moms with children with disabilities. Go out, have coffee, rant about your families, and the schools.
I did just start telling people that there is no magic pill. I wish there was.
My life has changed. Sometimes I still wish for normalcy. But my journey has been an enlightening one. I've met alot of great friends in this life. And there's nothing like adversity to show you who your true friends are.
My second was a girl. She is nine, and the best "big, little sister" anybody could have. She could sign before she could talk. She was the waiting room sibling co-ordinator at 3. She was in special ed classes before she could crawl. I worried about her incessently, because I was afraid she would not be able to interact with "normal" kids. So, we started baby dance, and baby gymnastics. Then I put my guy in the same gym class. It took him so far ahead, and I met many great people. Yes, you will enjoy. But it does take time.
When you say I am having one of those days remember:
I had one of those days that lasted over a year.
But this too will pass.
It is difficult, alot of the time.
And sometimes it seems that the challenges never stop coming, they just change.
Now instead of fighting for his life, I fight for his right to an appropriate education.
I guess, eventually, I'll be fighting with a daughter-in-law, if all goes well. :o)
Hang in there.
Written by Debra Hall (November 2000)
Copyright 2000 by Debra Hall for KidPower Family Support Resource. Please do not reprint without permission.