Monthly Archives: March 2015

A love/hate ode to Rubinstein-Taybi Syndrome

This month, The Mighty is asking bloggers to write a letter to their child’s diagnosis. Here is our love/hate ode to Rubinstein-Taybi Syndrome a la 10 Things I Hate About You (I might have read too many Buzzfeed nostalgia pieces recently).

 

To my child’s rare diagnosis:

I hate that no one’s ever heard of you, and that you’ll always be around.

I hate the way that blue tag in my car hangs down.

I hate the way you make others stare.

I hate when my child hurts and I can’t read his mind.

Braxton and Dad

I hate that so much it makes me sick, it even makes me rhyme.

I hate the ways he’ll always be delayed,

I hate it when you make me cry.

I hate that you stole my child’s voice, even worse that I have to fight to get him a device.

I hate it when his basic needs aren’t met, and the fact that my answer to all developmental questions is “not yet.”

Mostly, I hate the way I don’t hate you,

Not even close…

Not even a little bit…

Not even at all.

 

You see, you’ve made me change my perspective, and

I see that there is so much life to be lived.

Braxton at the beach

That smile we’ve come to love is one of your many hallmark traits,

And that infectious laugh warms the heart and soul of all acquaintances he makes.

I appreciate the way you make me take a closer look

And celebrate the inchstones not found in any baby book.

We say that you don’t define him, but the him we know and love?

Well, without you that him he would not have become.

We’ve made peace with your existence and we know this path will be met with resistance.

Armed with faith, hope, and love this, too, we shall overcome.

They told us not to expect much, but they didn’t know his spirit.

The nevers became maybes, the maybes became soon, the soon became now and now we know he has no limit.

We have the courage to dream again without fear of the unknown,

Because now we have a community of support, and my how it has grown!

The people in our life we might not otherwise have known, had we not started on this journey feeling so alone.

Every challenge faced has made us stronger and now it’s more clear than ever, a hold you have on us no longer.

Braxton and Mom

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You Shouldn’t Wait for it to Offend You Before You Take a Stand

Today is the official day of awareness for the Spread the Word to End the Word campaign.

Per usual, I have been reading posts from various bloggers who I often read, and today a particular post struck a nerve with me – not in a bad way. The author wrote You’re not offended until it affects you as a response to someone who simply does not understand why the word “retard” can cause one to get so “worked up.”

I paused for a moment and let out a not-so-silent Amen! to myself. And then, I paused once more as I thought about my experience and how true that was for me personally. Which then led to me to think, “Wow, it’s such a shame that it took disability directly impacting my life before I changed my mindset.” Finally, I realized how true this is for MOST people.

So many people vehemently defend their “right” to say the r-word by citing their right to free speech among other erroneous excuses (see the article linked above), but what all those excuses boil down to is the fact that they likely have zero experience with people who have intellectual disabilities so they don’t understand the “big deal”.

They don’t know what it’s like to see a loved one struggle with the most basic of tasks, to wonder if their child will ever speak, to wonder if their child will ever walk without a limp, to wonder if their child will ever walk at all. They don’t know the fear in our hearts when we send our child to school for the first time and HOPE that he will be accepted by his peers. Will they tease him because he doesn’t walk fast enough? Or because her speech is slow and difficult to understand? Will they point and laugh because he rides the “short bus”? Will they simply call her a “retard” and walk away?

If these thoughts have never crossed your mind, you’ve probably never second-guessed your “right” to say the r-word either, but that still doesn’t make it okay for you to use the word. When we (parents of children with disabilities) correct you or bring it to your attention, it’s not to embarrass you or chastise you – it’s to educate you because we know you might not have had a clue how that word affects us and our children. We know because we’ve been you.

So many of us grew up using the r-word and never gave it a second thought. But then we grew up and had a child with a disability and “retarded” became part of our child’s diagnosis.  Suddenly, the word lost all of it’s hilarity. I was ashamed and embarrassed that I ever used that word so frivolously. Suddenly, the word had real meaning and it did NOT mean stupid, pathetic, loser, less than, ridiculous or any other word the r-word often replaces. With a single word, our dreams changed, our world turned upside down, and our instinct to protect our child from ever hearing the word kicked in. Suddenly, it became a very “big deal” and it was no longer “just a word.”

You’re not offended until it affects you.

Why should disability have to affect any of us at all before we are offended by the r-word?  I love my child unconditionally with no end, but I would not wish any of the struggles we have had on anyone, simply so that they understand the true significance of a word. Don’t wait until it is too late. 1 in 10 Americans are affected by a Rare Disease. 1 in 68 children have been diagnosed with Autism. The prevalence of other disabilities is just as great. Chances are, you DO know someone with a disability. They may not be YOUR child or YOUR family, but they are human and they have feelings and they deserve your respect. The r-word hurts an entire population of people, just as racial epithets do. It does not belong in our vocabulary and should no longer have a place in our culture. Find the compassion in your heart and hear my words. I don’t want you to know the hurt I have before this issue matters to you. Take a stand NOW. If one day, you learn your child has an intellectual disability you will be spared the shame and embarrassment I faced when that word became more than “just a word.”

 

Take the pledge now and Spread the Word to End the Word.

spread-the-word-to-end-the-word-2015

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Filed under Life, Special Needs Child