"taleS froM the trencheS

National Guard wife blogging about her adventures with three sons and the unexpected joys of Smith-Magenis Syndrome (SMS)
....um, yes. They are tears of joy. Really.

Our Squad

Our Squad

Friday, August 15, 2014

How I Got My Son with SMS Off of the School Bus: Part I

As I mentioned before, transitions are difficult for my son, Garrett, who was born with Smith-Magenis Syndrome.  We have had the most issues transitioning from home to school and back again.  Although I found a solution for getting on the school bus quite quickly and easily (see that blog post here), I have not been so lucky finding a trick to him get home again.

The argument could be made that I’m just not as exciting, attentive or pretty as his bus driver (all true). However; I think by the time Garrett reaches the end of the school day, he has used up all the energy he had keeping his SMS behaviors in check.  There is nothing left to give.  He is ready to let his SMS flag fly and that typically occurs in our driveway. 

In front of God and my nosy neighbor. 

                      And every classmate in high school. 

                                               Because we live right across the road from the school building. 

The first tactic I used lasted a couple years which is a good run in SMS time.  Because I had such luck using a raffle ticket left over from our PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) fundraiser, I thought I could use the prizes as well. 

Our fundraiser was a “SMS Friendly Family Carnival.”  SMS friendly meant no clowns, balloons, music or any other trigger that upsets Garrett at the fair and other places we cannot take him.   I bought simple games like ring toss, bean bag toss and a duck pond where SMS kids could play for as long as they liked. 


They received raffle tickets that could be cashed in for prizes.  I bought the prizes through Oriental Trading.  It’s really cheap and you can get a lot of bang for a buck.  

For Garrett, it’s all about the “getting.”  It would be better for him to receive a bunch of penny prizes than one large prize that he might actually use.  After the carnival, I had a lot of left over beaded necklaces, tattoos, stickers, BB mazes and pencils.  I took the box our checks had been mailed in and wrote “Garrett’s Box” across the front. 

I did not tell Garrett about the box on the first day.   Six or seven hours of anticipation would have caused the greatest of meltdowns.  When the school bus returned home, I was waiting across the road.  Garrett had to cross the road to get back into our driveway and I could not trust him to walk on his own.  I was careful not to talk to the bus driver, or even make eye contact. 

Garrett told the driver goodbye.  He saw me standing the bottom of the steps.  He turned back around to the driver and started to cry.

“Garrett, I have a surprise for you.”  I shook the box.  That day’s prize was a beaded necklace.  I knew it would make noise.

“Surprise?” Garrett looked at me.

“Goodbye, Jenny!”  He didn’t give her a second thought and came down the steps into my loving arms.

Okay, it wasn’t quite that beautiful.  But there were no tears, snot, blood or body fluids of any kind.  Life doesn’t get any better than that. 

He tried to take the box.

“You can open it inside.”  That has been the one consistent rule of getting off the bus.   The "prize" has changed over the years, but it is always received inside the house.  And Garrett gets the prize no matter what because it is not a reward for good behavior. And the prize is not held when there is bad behavior.   It is just what he does when he gets home, like the way I always hang my car keys on the hook inside our house.  (Except when I don’t and then I can’t find them.)  It is so that there is a constant.... 

Even if I’m not there to get him off the bus.

Even if we have company.

Even if we don’t have company.

Even if his brother is still at school.

Even if his brother stayed home sick.

Even if all the even ifs have failed, Garrett always opened the box.  There was predictability to his routine every day.  Usually, he did not even keep the “prize”.  I would put the tattoo or pencil back in my hidden bag and use it again another day. 

Until he no longer cared what I had in the box. 

And that’s why this is only Part I.

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