taleS froM the trencheS: SMileS: Getting Beyond the IQ number

Friday, April 27, 2012

SMileS: Getting Beyond the IQ number

Mental Retardation

That phrase was spelled out on my son's Smith-Magenis Syndrome diagnosis. At the time, he was 18 months old and that term was very difficult for Charlie and me.

Fast forward two years and Garrett was building a complex system of towers. A pile of toys, step stools, blankets and pieces of furniture greeted me around every corner. We hid anything deemed "off limits." Not your typical chocolate chip cookies kind of hiding. We hid scotch tape, flour, band-aids and diaper cream. We even hid bananas which continues to be an ongoing problem. (see here for the Banana story)

One morning, I put some clothes away. When I returned downstairs, I found the baby gate knocked over and my empty clothes baskets stacked in the kitchen. It did not take me long to connect the dots.

I walked into the living room and found Garrett standing in a pile of sandwich bags. He must have heard me (because I was yelling) and he quickly ditched the evidence.

"Framing baby brother"
will never be on the IQ test.

But I can see the genius.

Almost a decade later, this scene makes me laugh. The baby was still cruising and had yet to take those first steps. I am certain he was not building towers and knocking over gates. But, Garrett's decision was so "typical" of a brother. And the nudge I needed to let words and phrases loosen their hold on me.

I would like to make "SMileS" our friday episodes here at "taleS froM the trencheS." Do you have a picture or video of your child with special needs that makes you smile? Could you share the story behind it?

Send your photos and a short description (200-300 words) to my e-mail account tmcgrevy@yahoo.com. If you have a link to video website, we can do that too!

Can't wait to hear your stories!!

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Operation Order:

Although every parent dreads the day a sheriff’s deputy stands at the front door with her child; only we unique moms get to experience this event with our first grader, dressed in his favorite Dora pajamas, who tripped the home alarm system in the middle of the night. Yes, I said “his” favorite Dora pajamas. My blog, “taleS froM the trencheS”, tells the paradox of our “normal” family that just happens to be a little different.

When our first child, Garrett, was diagnosed with Smith-Magenis Syndrome (SMS) at 18 months, my husband and I were terrified to live in a world we had never even visited. Autistic-like issues, a disturbed sleep cycle and the self injurious behaviors that accompany this genetic condition can make life more difficult. But fifteen years and two brothers later, Garrett keeps us laughing despite the challenges.

Stories about our adventures are entertaining, but the bag of tricks we have acquired as Garrett’s parents are beneficial to any family living with sensory integration issues. The bus ticket he hands the driver each morning helps him make that difficult transition from home to school. (The bus ticket looks a lot like the roll of raffle tickets you can buy at Wal-mart for ten bucks.) We have a shopping bag with check lists and coupons to keep him occupied at the grocery. He has a bag at church with the directory of everyone’s picture and nativity finger puppets to act out the sermon. Sometimes we have more “bags” than “tricks” and are not able to stay this one step ahead of Garrett.

Another difficult step in the SMS Dance is trying to balance our younger typical children and their activities. My husband, Charlie, and I have to take turns staying home with Garrett or attending Little League games. It isn’t fair, but neither is life. I already know that my poor decisions today will employ a shrink twenty years from now, but I hope my awesome oatmeal cookies will keep a tether to my sons.

Although this is not the life we had planned, we are still going strong despite the extra stress of medical bills, sleep deprivation and a decade and a half of Barney videos. Did you catch that? Fifteen years. Of the purple dinosaur. We do not see an end in sight.

Laughter helps. But the cure is in the coffee.

taleS froM the trencheS