taleS froM the trencheS: June 2012

Thursday, June 7, 2012

SMileS: First Visit to the Ocean

SMileS Friday: SMS Photos or videos that make us smile

I asked other SMS moms to share their favorite stories and photos for my Friday posts. My friend, Heather, sent in these pictures of her son's first walk on the beach.

First Visit to the Ocean

Heather's son, Chris, was born with Smith-Magenis Syndrome and like many children with this diagnosis, he has sensory issues. In the spring, Heather's family took their first vacation to the ocean. When they got to the beach, Chris was uncomfortable walking barefoot on the sand.

So, Dad took Chris's hand and helped him to the water.

Chris tried to stay up on his tiptoes in an attempt to avoid the sand...a feat that I could not manage for very long!

Heather writes, "By the end of the day, he was a pro at the beach thing and even stopped in all of the sandcastle building madness to give me a cheese face!"

Standing in the sand and smiling!

Way to go, Chris!

If you have a story you would like to share on an upcoming Friday blog, e-mail it to me at tmcgrevy@yahoo.com. If you have photos to go along with the story, that's even better!

Thanks for sharing, Heather!

Friday, June 1, 2012

SMileS: First Day of Summer Vacation

SMileS Friday: SMS photos or videos that make us smile

First Day of Summer Vacation

Yesterday, all three of my boys were home from school at 3:30 in the afternoon...and officially on the start of summer break.

Approximately three hours later, this is what I found in the upstairs hallway:

"What happened?" I asked, softly and without added swear words.

"I need to wash my hands." I heard a response behind me.

I turned around to find this sight:

"Why, yes," I replied, softly and without added swear words. "It does appear that you need to wash your hands, Mr. McAwesome."

There are 82 days until August 22nd, 2012.

Would you like to guess what day that is?

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