taleS froM the trencheS: World Smith-Magenis Syndrome Awareness Day

Monday, November 17, 2014

World Smith-Magenis Syndrome Awareness Day

Today is the day we celebrate individuals born with Smith-Magenis Syndrome (SMS) and their incredible families.

These families make a coordinated effort to spread SMS awareness in their own corner of the world.

I am pleased to announce that my blog is featured on an international special needs support group, Firefly. This group has started a site, called Firefly Garden, where families can meet in a virtual garden and ask questions, share knowledge of useful products or start campaigns to make social changes.

It is free to join, visit http://community.fireflyfriends.com for details.

It's so hard to get SMS awareness out there! We are very rare (one in 15,000 births according to the PRISMS website) so I am thankful that Firefly Garden is highlighting kids like Garrett today.

So you click here: http://community.fireflyfriends.com/blog/article/november-17-2014-world-smith-magenis-syndrome-day

and say"Thank You" to Firefly Garden.

SAY THANK YOU!

I said SAY THANK YOU!!!!!

(that's SMS talk for "Please visit the site today". )

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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