"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

Wednesday, August 20, 2014

The Grocery Store Trip: AKA The Mommy Meltdown

One of the first things my husband and I learned at the PRISMS International Conference was that our son needs consistent and continuous help with his behaviors.  Modeling and positive re-enforcement on our part goes a LONG way in avoiding the prolonged SMS meltdowns.  In the words of Mary Beall, our SMS kids need to “borrow our calm.”  It’s true.  It works, almost every time.  Some days I am very good at faking how calm I am; and other days, I’m not even close….

Going grocery shopping trip with my son who was born with SMS quickly becomes an episode of “Garrett’s Favorite Things.”  The only thing missing from these excursions was Oprah’s confetti falling from the ceiling while he snatched up a balloon, a Lunchable and anything from the chocolate food group. 

Garrett, his younger brother and I walked through the stoned arch doorway of our local supermarket.  We strolled past the patio furniture, photo department and the florist, covering the distance of a football field before reaching actual food. 

“Balloon!” Garrett cranked his head back towards the florist.  “I need a balloon!  It’s my favorite.”

I calmly placed both of his hands on the cart. 

“Here, Garrett.   I need you to drive.”

I pushed him down the aisles, grabbing food with the hope of moving faster than he could see. 

Four loaves of bread.   A box of Cherrios.  A box of Cinnamon Toast Crunch. 

I turned my back for one second.

Frosted Flakes. Lucky Charms.  Ceral and more ceral.   
 “MOM!”  my son tapped my back and pointed to the produce section.  Garrett had found the bananas and was very close to consuming one.

“Garrett!”  I ran off towards him with his brother on my heels.  “You forgot the cart!”  I yelled back over my shoulder.

I grabbed the banana out of Garrett’s hand.

“Banana!” he cried.  “I need a banana!  It’s my favorite.”  I tossed the banana in the cart.

“You can have a banana when we get home.”  I threw two big bunches of bananas in the cart and four loaves of bread cushioned their fall. I pulled his brother off of the cart and placed both of Garrett’s hands back on the handle; calmly.

“Here Garrett.  I need you to drive.”

We turned the corner and I started to round up my necessities:  a bag of Dunkin’ Donuts coffee beans, coffee filters and powdered creamer.   I spotted the Kureg K-cups and tried to remember if my coffee Merry-go-Round at home still contained Green Mountain’s blueberry coffee.

In the corner of my eye, I noticed my youngest child standing, spread eagle, with his arms up in the air.   He was too short to block the top of the cardboard display; the first shelf of what I could only assume was at least fifty Pillow Pets.

I hugged Garrett’s head into my shoulder (totally different from a “head lock”) and steered the cart towards the meat department.   

Chicken or Pot Roast?   I wondered what my husband would want for-----

“Lunchable!  I want a Lunchable!  It’s my favorite!”   I looked over and Garrett was holding a Pizza Lunchable in one hand and a Ham and Cheese Cracker Lunchable in the other. 

“You can have one, Garrett.”   I told my younger son to pick out one, too.    “Garrett, the crackers are crunchy.  You like the pizza one----“

“Oh!  I want THIS one! It’s my favorite!”  Garrett held up the Cadillac of Lunchables….a turkey sub sandwich with the tiniest water bottle ever created.  

“Garrett, that one costs too much money.  Get the pizza one.”

“I WANT THIS ONE!  I WANT THIS ONE!”  At least four heads turned our way.   

“Fine.  Put it in the cart!”  I said, mostly calm. 

I placed Garrett’s hands back on the cart—again!   I grabbed the front of the basket, helping him continue in a forward motion.  We had to get some milk and then we could leave.  I opened the dairy case and picked up two gallons of milk.  White milk.

“Oh!  I want chocolate milk.  It’s my favorite.”  Garrett reached for a pint sized Nestlé Quick milk bottle.  It was only dollar, totally worth the price of peace.   But somewhere between the Lunchables and the milk, I had lost my calm. 

“No!”  I said firmly.   “You are NOT getting ANY chocolate milk.”  

“Waaaah-Waaaaah!” : The SMS Wail.  It’s loud.  And it’s a show stopper.  

Everyone we passed turned and stared.   I didn’t care.  This was war and I was going to win.  He was NOT going to get chocolate milk.

We finally reached the checkout lane, the one closest to the floral department.   Garrett was quiet, but only long enough to catch his breath.

“I want a balloon!  It’s my favorite!  Balloon!”  We had an unobstructed view to the balloon display, but I was in too deep.

“You are NOT getting a balloon!  And you are NOT getting chocolate milk!”  I was proud of myself and my---

WAMP!  He took his fist and slammed it down on the conveyor belt.  The cereal boxes jumped and fell over.  I held his hands down on the cart handle and tried to keep his body from knocking the candy shelves over.  It suddenly occurred to me that I could not physically get him out the door should his “Jello Legs” make an appearance.
I asked my younger son to get in front of the cart and unload it.  I missed the scene, but he told me that all the managers came out of the upstairs offices to look down at our lane.  I have no doubt that this will be first on his list of reasons why I never see my grandchildren. 

Somehow our bags were packed, the bill was paid and we made it out of the store.   If I was being honest, I knew that this whole event would not solve anything.   Garrett will always ask for everything he wants; saying “yes” or “no” will not prevent that behavior.  He doesn't ask because we give in too much.  He asks because he’s impulsive.  The trick is to prepare for shopping ahead of time: make a list, go over the rules…blah, blah, blah…sometimes I just want to go to the store and pick up something for supper. Everyone does it!   It’s exhausting that every little event has to be planned out. 

We were outside and I was ready for my own meltdown.  I searched through the cart and found Garrett’s overpriced Lunchable.  I held it up over my head like that Monkey-Priest in  The Lion King

“Is that how we act in the store, Garrett?”  He gasped and held his hand over his mouth.

“I asked you a question!  Is that how we act?”  He shook his head no. 

“No Lunchable for you!”  Like a Soup Nazi, I threw the box in the trashcan.   My younger son was appalled, another bad deed on his list.  

“You can have my Lunchable, Garrett,” he said and then they both were crying.  I loaded up the van and let them sit inside, behind the tinted windows.  Maybe there was someone left in our town who had not witnessed our shopping trip. 

Just as I closed the back gate, I heard Garrett’s name.  I looked up and saw the lady from the floral department running across the parking.  And she was carrying a red balloon.

 “Garrett!  Wait!”  

She was a stranger to me, but she knew my son.  She met me at the driver’s side door.

“Whew!  I thought I missed you.  I heard Garrett crying and I thought a balloon would make him feel better.” 

Garrett was flailing about in the front seat.

“Oh, hi Baby!”  She waved back at Garrett.

I opened Garrett’s door.  He was nothing but tears and snot.  She leaned in to hand him the ribbon and he ratted me out.  “My Mommy threw away my Lunchable!”

She looked back at me and I readied myself for her judgment. She whispered to me out of the side of her mouth, “I don’t know what he said.”

I looked her dead in the eye.  “He said thank you for the balloon.” 

I slammed the door shut.

“Aw, you’re welcome Baby.”  She waved goodbye to Garrett.

I sat down in the driver’s seat and glanced in the rear-view mirror, but my son would not make eye contact with me.  I looked over at Garrett.  His brother’s Lunchable was opened and sitting on his lap; most of the cheese already eaten.   He held a balloon in one hand and an opened bottle of Nestlé’s chocolate milk in the other.   I had not even noticed the traitor putting the chocolate milk into the cart.  This was the brother who complains that Garrett is not disciplined enough but will jump to his defense the moment he is punished. The boy I was secretly proud of, even if he was giving me the silent treatment. 

I put my foot down in a battle not worth fighting, lost my calm and embarrassed myself; yet Garrett still managed to get everything he wanted.  Somehow, I did not feel like the winner. And maybe that’s because there is no “win” in a difficult syndrome like Smith-Magenis syndrome.  There is only “start again.”  

Usually it’s Garrett that needs a do over.  I always give it to him; sometimes grudgingly. 

And occasionally, it’s me that’s needs another day to try to get it right.   I never have to worry about forgiveness.  Garrett gives me that restart without any bitterness or resentment.  

That is the one SMS trait I wish was contagious.  

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.

Friday, August 8, 2014

How I Got My Son with SMS on the School Bus

Ask any parent of a child with Smith-Magenis syndrome and they will say that transitions are difficult, like getting a rich man into heaven difficult.  There is something about going from the front door to the school bus, school bus into the classroom and school bus back home again that sets my son, Garrett, on edge. 

As Garrett has grown older, he can articulate his fears more clearly than those early days of grade school.  “Who is going to be there?  How long will I be there?  Will there be birthday cake?”  I think the questions are deeper than they appear.

Who is going to be there:  What if my favorite bus driver in the whole wide world is absent today?  Who will take her place?  Will they talk to me?   Is someone I don’t know going to get on the bus?  What if my favorite bus aide in the whole wide world talks to this new kid instead of me? 

How long will I be there:  Are we going a different way today? Is the radio going to be on? Can I still sit in the front seat, like I have every-single-day since the beginning of time?

Will there be birthday cake:  Is something fun going to happen today?  Is something fun not going to happen today?

My highest anxiety comes from starting a new job.  In some ways, Garrett starts a new job every day.   But if he has role to play, a job to do, then his anxiety lessens. 

I stumbled across the “getting on the bus job” by accident.  And unlike “getting off the bus job”, it has lasted all the way through grade school, middle school and we are still using it in high school. 

One day Garrett was watching Caillou, or as my husband calls it, “Crybaby Caillou.”  There is nothing worse than using the television as a babysitter for your kid and discovering the TV character is a whiner.   In this particular episode, Caillou had the waterworks under control and was going to the city with his grandmother.  When Caillou reached the top of the city bus steps, the bus driver looked at him and said, “Ticket, please.”  Garrett clapped his hands, jumped up and down, and was very excited.   

Call it dumb luck, but my husband and I had just recently held a fundraiser for PRISMS (Parents and Researchers Interested inSmith-Magenis Syndrome) and I had purchased a roll of raffle tickets.   I called Garrett’s school bus driver (every bus driver has always given me their home phone number) and told her my plan.  We decided to let Garrett walk to the bus alone because he seemed to have difficulty telling me goodbye.  Honestly, he did not like me talking to his bus driver, but I prefer the other reason.

The next morning, I waited at the front door and gave Garrett a raffle ticket.  Since Garrett watches every episode of Caillou at least a hundred times, he knew exactly what to do.  He had no difficulty leaving me at the front door.  If anything, the biggest issue was him running too fast down the driveway.

Ten years later, Garrett still gives the bus driver a ticket.  It is the only SMS Trick that has lasted that long. In fact, the “How I Got My Son with SMS Off the School Bus” will be divided into three episodes.  Stay tuned.

Do you have difficulties getting your child on the school bus?  Share your tricks in the comment section.   

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