taleS froM the trencheS: March 2012

Wednesday, March 28, 2012

Perpetual Parenting: Raising a child with Special Needs

Coming to terms with the diagnosis:

In the early days following our son’s diagnosis of Smith-Magenis Syndrome (SMS) my husband, Charlie, found an internet support group on Yahoo. He begin e-mailing other parents who also had children born with SMS.

Within the first couple of days, a father of a teenager informed us that our pain would reappear every time our son missed a milestone; like driving a car or getting married. He ended this motivational speech with the comment that we should "prepare ourselves for a life of perpetual sorrow.”

Perpetual Sorrow! Who would say that??

We stared at the computer screen.

“Bummer,” Charlie whispered.

I swallowed the lump in my throat.

“Perpetual sorrow sounds like one of those shrines you see on the evening news with cars lined around the block,” he said.

I had visions of ketchup tears streaming from our wedding portrait.

“I don’t think that we want to live in perpetual sorrow,” he said.

I nodded in agreement. That wedding picture was the last time my hair and makeup were done, on the same day.

“Then we won’t,” Charlie declared and he turned the computer off.

It was a long time before we reached out to SMS families again.

Moving on

Almost eleven years have passed since the diagnosis and two more boys were born. I think it is safe to say we do not live a “life of perpetual sorrow.” And that engaging personality? It’s true. Garrett keeps us laughing despite his challenges.

Although “perpetual sorrow” is amusing to us now, this certainly is not the life Charlie and I had planned.

We already know we will be caring for our son beyond his childhood and into our retirement years. However, we prefer to call our unique situation “perpetual parenthood.”

No, not the kind of everlasting offspring that lies on our couch and plays video games all day. It’s the kind of parenting that requires constant supervision and involves some worrisome health issues.

And perpetual parenthood will include Sunday dinners at the kitchen table. My son will always be excited to see me walk through the front door. And on every errand, he will manage to con Dad for a chocolate shake at McDonald’s drive thru. We will have lifetime visits from Santa and party hats at every birthday.

What can be sorrowful about that?

Do you remember your first contact with another parent? Was it a positive one?

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