Thursday, February 27, 2014

Standing up for Brahm

When you have a child born with a special need, there is a period of loss, and so many tears.  Tears over regret, the loss of dreams, but mostly, tears as you watch similar aged children progress past your own.

What you know is that your child's path will be harder.

I guess this is why they now call them Challenged. (which BTW I have such a hard time still even uttering the words challenged, disabled, or special needs with any of our kids.)

But your child learns to finally walk, to talk, to meet all those goals.  And somewhere in the midst you fall in love with the things that make your child unique.

For Brahm, the deepest ache I felt was when we realized his heart for sports, pairing that with a body that would let him down and I remember crying out the Lord WHY!  How unfair.

We also made a conscious decision to give him every opportunity to play for as long as his body would last.

What I didn't know is that I would have to fight for this right.

If you have followed then you know Brahm is a phenomenal little wrestler.  We loved the sport because he could compete against others that were close to his size and weight.  For a child who only gains 2-3 lbs a year we knew his time wrestling would be limited.

What we didn't know is his hopes would be dashed THIS year at the age of 7!

You see our little guy weighs 34-35 lbs but because of his birthdate - he is supposed to wrestle in the 8U division.  The biggest problem is that their lowest weigh division is 45 lbs.  That's almost a 50% increase in weight.  It's ludicrous.

Even worse is that he has been allowed to wrestle in the 6U - 37 lb division all year.  He does win - not because of any other reason than he his good.  His understanding far outweighs his age.  He started wrestling last year and won 4th in state.

Then just days ago, before he was supposed to wrestle state THIS year - we were notified he HAD to wrestle in the higher weight division.

And the tears started flowing again.  You see his Dr's were ok with him wrestling in an appropriate weight class but they warned us an accident, and forceful trauma to one of his little joints could become catastrophic.  My husband and I knew there was absolutely no way he could wrestle in the 45lb weight division.

So I cried, I wanted to hide in my room, and cry even more for how unfair life was for our fierce little guy.

And then I posted - on FB - and was encouraged and then I knew it was my responsibility to fight for my him.  My responsibility to try my very best, to research this issue to help our son attain his dream.

SOOOO, I have emailed, & I have called each time specifically stating our request for a "reasonable accommodation" (this is the terminology for ADA.)

I have a clear paper trail - Hoping, praying that someone will find some bureaucratic common sense and do whats right for our son.  We are at the very top organization for wrestling within the US.  I almost laughed when I found their address - in our town.  But it also made me sad, as their offices are located just miles from the US paralympic training grounds.  Of all the cities in the US to discriminate against our boy.

My Aunt said it the best " All children need to learn how to win and to lose, but they need to be given the chance to try."

So as time ticks down to Saturday morning please pray with us for strength and that they find an appropriate compromise.  I really don't want to file an ADA or Civil Rights complaint but am prepared to so, so that another child does not have to go through this.

State - 2013

The test of the morality of a society is what it does for its children. 
~Dietrich Bonhoeffer


2/2014
"A nation's greatness is measured by how it treats its weakest members." ~ Mahatma Ghandi

4 comments :

  1. Just wanted to give you my verbal support if you need to file a grievance....something like this rips the heart out of a family....in 1980, my "high functioning developmentally delayed" son wanted to play baseball . Tried out for little league and got the call 5 days later that he "didn't measure up".That came from a physicians wife in Salem Or. who had some role in the local league, and told me my son had to "get used to " win some lose some. I cried and all these years later my 43 year old son stll struggles in the "real world"..Best to you and go after "them"...I didn't know how to do that at the time..mm, vancouver, wa.

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  2. So what happened? Or maybe what is happening with this? I've been praying that Brahm got to participate. My 7 year old loves loves loves hockey. But it is so competitive in this area, he is just not good enough, he doesn't 'get' games (he has high functioning autism), that this coming season will most likely be his last as after you turn 8, there are 'cuts'. It makes me sad that it has to be so competitive so young, that there isn't a way for different abled to participate in what they love....

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  3. I'm behind in reading- any chance we can get an update? Hoping it all worked out for your sweet boy!!

    Best wishes for safe travels in China this week.

    KK

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    1. Not sure if you all will see this - we filed an ADA complaint against the organization. This is filed with the department of justice (DOJ) and we expect it to take a long time before we hear anything back

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