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!!

Marriage Issues for Special Needs Parents

It was the same fight that my husband and I have had a million times.

It was not about money. We never fight about money.  Charlie and I like money and we wish we had more.  He does not have expensive "man hobbies" and I am not "high maintenance", as one can clearly see from that blurry mugshot in the right hand column.

For us, the most stressful part of our marriage is parenting a special needs child. Thankfully, we are in agreement on the basic concept:

    Pick your battles-

Let the little things go and focus on the big issues

    Divide and Conquer-

Make sure both partners get a break

    Carry on-

Allow the typical siblings a chance be a part of their own activities and interests 


So, since we truly agree on The War Plan, you would think that the battlefield would reflect that.

Wrong!

This is what a fight looks like in our marriage that is managing 

Smith-Magenis Syndrome.   

          (And I use that word "managing" loosely.)

Setting:  Inside a somewhat new mini-van.  It has handle-bar scars down each side and an invisible spot on the left panel ( Go here for that story).  There is always a faint odor of spoiled milk.

Cast: Charlie, me and our three sons.

It's a beautiful day and we are cruising down the road. 

Suddenly, without warning, Charlie turns on the radio. 

Garrett has a meltdown.

Me:  What are you doing?

I look at him as if he had lost his mind.  I reach down and turn off the radio.

Charlie:  I can't listen to the radio in my own van?

Me:  No.

Even though the radio is off, Garrett continues to cry from the third row.  Our two sons in the middle row have their headphones on and their eyes glued to hand-held video games.

Charlie:  My mistake.  I thought I was the one making the payments.

The temperature climbed at least ten degrees, so I reached over and hit the button on my window.

Garrett:  No!  NO!  Too windy!  TOO WINDY!!

Charlie has the nerve to look at me as if I just lost my mind.

Charlie: What are you doing?

He uses the driver's control button to move my window back up.   My repeated thumps on the passenger button cannot over-ride the driver's lock.

I make a mental note to research this annoying feature before our next auto purchase.

Charlie:  Why don't you just turn on the air conditioner?

Me:  Why don't I just sit here and roast?

I cross my arms and turn towards the window...the auto equivalent of storming out of a room.

We do not look at Garrett. We do not speak to Garrett.  Instead, we turn on each other like sworn enemies.

Garrett increases the volume of his cries. Mario and Luigi continue their go-kart race; oblivious to the war raging on around them.

Charlie starts to hum the theme to the old television show, "Good Times."  A joke he believes is still funny after eleven years.

I turn towards him and start to hum "War is Hell on the Homefront, too."

Charlie shakes his head and shrugs his shoulder.  Clearly, T.G. Sheppard humor is lost on a man that was raised in New England.

Finally, Garrett finds a Jack-in-the-box.

The sound of "Pop Goes the Weasel" fills the van.

Garrett starts to sing.

Garrett:  Round and Round.  Monkey, monkey, weasel.  POP!!!!

The only song that gets the Garrett Seal of Approval.

Charlie turns on the AC and reaches for my hand. We both claim that we were not really that mad.  And we wonder if we give Garrett too much "control" in the car.  Maybe we should "lay down the law?"  But how can Garrett gain control of himself in such a small confinement?

More SMS questions we don't have answers to, but we promise not turn on each other during the next go-round.

We even say it with a straight face.

Anniversary of Smith-Magenis Syndrome Diagnosis

Sometime in this first week of April, it will be eleven years since Garrett was diagnosed with Smith-Magenis Syndrome (SMS).  I can not believe that I have forgotten the exact date, but I think that's a good thing!

Charlie and I were shocked at the news.  We thought Garrett's motor delays (the only SMS symptom obvious to us at the time) were due to his chronic ear infections (also a common problem for children with SMS). Charlie was one week into the fire academy and we had just learned that our second baby, due four months later, was going to be a boy.

The dream job.  Our perfect family.  Everything changed in one afternoon.


Finding support for our family:

Our pediatrician could not find any information about SMS in his text books.  He called Children’s Hospital Genetic Clinic and they faxed over one page about SMS. 

One page.   We were told that our toddler had a syndrome that was life altering from who we thought he was.

Eight paragraphs.  And the only information we had about this syndrome fit on the front side of an 8 x11 sheet of paper.

At least 200 really, really big words.  The majority of that information we could not understand.

Three pictures that scared us to death.  Those horrible “medical pictures.”  As strange as it sounds, I could not even see Garrett’s adulthood in color.  Every vision I had of him was in black and white with a bar over his eyes.

And hundreds of questions unanswered.   What was going to happen to us?

Finally, we located the PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) website.

It was early 2001 and we did not have “The World Wide Web” in our house.  My Aunt Patty found the website, but I cannot remember how….was Google alive eleven years ago? She printed off several stories written by parents and brought them to our house.

Encouraging stories (click here)!  With colored pictures!  Not only were these kids smiling, but there were no black bars across their faces. 

Then, we joined the non-profit organization.  And they mailed us a packet full of every back issue of their newsletter, “The Spectrum.”  (Past "Spectrum" issues are now posted on the website here.)

We pored over every single word of those articles.  It was surreal to go from eight paragraphs to pages and pages of information.

Information for Families

Research Updates

Medical Issues

And my favorite, stories from other SMS families.

 

What a difference from those eight paragraphs!!

We are celebrating our 11 years with PRISMS with a fundraiser to help with the cost of this year's PRISMS conference in Denver, Colorado (go here for more info).  Click on the First Giving box at the top of the page to make a donation in Garrett's honor.  Thanks!