"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

Monday, December 8, 2014

How I Got My Son with SMS off the School Bus, Part III

Transitions, especially getting on and off the bus, have been tricky for my son, Garrett, who was born with Smith-Magenis Syndrome.  I have written about getting on the school bus (see this blog post here), but the getting home part has been much harder (see Part I and Part II ).

Just like the prize box, the sticker eventually lost its appeal.   Finding something “enticing” enough to get Garrett to (1) walk down the bus steps, (2) out the bus door, (3) turn and wave to the bus in a gentlemanly manner, (4) walk down our driveway and (5) open the front door while keeping said door on its hinges is key to the whole process.  If left to his own devices, the daily bus return looks like a scene out of The Exorcist

Like all my best ideas, the last (still working!) trick came from another SMS mom.  We were talking about the difficult issues with our kids during a “Mom’s Tea” at the PRISMS conference.  This brilliant lady bought the pre-packaged hot coco mixes and gave them to the bus driver.  Each day, the driver would give her son one package that he carried into the house, heated up water and made his own hot chocolate drink.   And, best of all, no words had to be exchanged.  Genius! 

Garrett does not like hot drinks, but he is obsessed with chocolate milk.  So much so, that we no longer keep it in the house or he will drink the entire gallon in a few hours.   It is a real treat for him to have chocolate milk and this would be the perfect “new trick”.

My first purchase was the chocolate straw.  




This would be a double treat because I do not keep straws in the house (too many episodes of overflowing bubbles).   I bought 5 packs, enough to last a whole month and I slipped them out to the driver when Garrett wasn't looking.

First day, it worked like a charm.

Garrett came running down the driveway. 
 
“Look what Heather gave me!” he shouted.

“Get a glass of milk and let’s see what happens,” I answered.

He went straight to the kitchen and poured a tall glass of milk.    He took a big gulp.  And, turned around and spit it out all over the counter.

Too crunchy!  Too crunchy!” He rubbed his tongue with his fingers.

I don’t like it!  I don’t like it!” He told me…just in case I misinterpreted the disgusting milk spit on my counter. 

I looked at the straw.  





It was full of tiny milk chocolate powder that was formed into balls.  When the white milk was sucked up in the straw, it would turn chocolaty.  Garrett would not taste the powder at all.

“Look, Garrett.  The balls stay inside the straw.”  I picked up the straw and squeezed it.

Too loud!  Too loud!”  He covered his ears.

His mind was made up.  The chocolate straws were a no go…and there was no getting around it.  (Good thing I knew he would love it and bought a whole month’s supply.)

The only other option was to create my own chocolate milk pack.  





I bought the snack sized bags and put 2 scoops of Quick powder mix in each bag. 

It has gotten to the point where I no longer have to give the baggies to the driver.  Garrett is doing pretty well at getting off the bus.  Most days, Garrett will come to the kitchen and make his own drink with the liquid Quick mix (which is kept locked in the fridge).    




However, we are still working on the "appropriate" amount of syrup….





Wednesday, November 19, 2014

SpecialMoms Parenting Magazine: Article about Smith-Magenis Syndrome



Happy to announce that I was given the opportunity to write an article about Smith-Magenis syndrome in the fourth issue of the SpecialMoms Parenting magazine.

This new and upcoming magazine was created by a mom whose son was born with Down's syndrome and it's "designed to celebrate the contributions of women, mom entrepreneurs who a making an impact in the special needs community."

It's FREE, but you have to sign up here to have it emailed to you:  http://www.specialmomsmagazine.com/welcome



Lots of great information for Special Needs Parents just in time for the upcoming Holidays....and did I mention that there is an article about Smith-Magenis syndrome?




Monday, November 17, 2014

World Smith-Magenis Syndrome Awareness Day



Today is the day we celebrate individuals born with Smith-Magenis Syndrome (SMS) and their incredible families.

These families make a coordinated effort to spread SMS awareness in their own corner of the world.

I am pleased to announce that my blog is featured on an international special needs support group, Firefly.  This group has started a site, called Firefly Garden, where families can meet in a virtual garden and ask questions, share knowledge of useful products or start campaigns to make social changes.

It is free to join, visit      http://community.fireflyfriends.com  for details.

It's so hard to get SMS awareness out there!  We are very rare (one in 15,000 births according to the PRISMS website) so I am thankful that Firefly Garden is highlighting kids like Garrett today.

So you click here:  http://community.fireflyfriends.com/blog/article/november-17-2014-world-smith-magenis-syndrome-day  

and say"Thank You" to Firefly Garden.  

SAY THANK YOU!  

I said SAY THANK YOU!!!!!

(that's SMS talk for "Please visit the site today". )

Thursday, November 13, 2014

SMS Awareness Day 2014: The Selfie and The Poem

For families of people with Smith-Magenis syndrome (SMS), November is a time spent preparing for SMS Awareness Day.  We are trying to get the important 5W’s out into the public’s psyche.  



 WHAT:  SMS is caused by a deletion of a section of the 17th chromosome. It varies from several missing genes, which is my son’s case, to one single gene being mutated.  SMS was named after Ann C.M Smith, MA, DSc(Hon), a genetic counselor, and Dr. R. Ellen Magenis, a physician and chromosome expert who first described the syndrome in the 1980’s.  There are physical, behavioral and developmental symptoms that are fully described on the PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) website:  www.prisms.org 

WHO: SMS does not affect any particular group of people: race, ethnicity, etc.  It is a spontaneous mutation and can occur in either males or females.

WHEN: The 17th chromosome is broken or the single gene, called RAI1, is mutated before conception. Either the sperm or the egg can have this mutation.  If a mutated sperm or a mutated egg goes on to the fertilization stage and makes the baby, then that baby will be born with SMS. 

WHERE:  The “technical” location on the 17th chromosome is referred to as p11.2.  That is pronounced as: Pea One One Point Two.  We use the “Eleventh” MONTH and the “Seventeenth” DAY for SMS Awareness Day because this is as close as we can get on the calendar. 

WHY:  It happened because either the sperm or the egg was mutated before conception.  There is not any linked “cause”…something the father/mother did or did not do to cause the mutation.  It really just happened.  


But, there are other WHY’s: WHY did it happen to my son?  WHY did it happen to our family?  That’s a dark place that I spent way too much time in during the early days of the diagnosis.  

Now, I have different questions:  Does Garrett  realize that he has SMS?  Does it bother him that he is different? 

A few of my SMS mom friends have mentioned some heartbreaking words their children have said about their feelings before or after the SMS “prolonged tantrum” or “explosive outbursts.”  I’m not sure Garrett is that self aware.  Or, maybe I’m just too afraid to ask him.  Some parts of SMS are hard for me to watch, I can only imagine how hard they are for him to endure. 

But then…not so long ago…I found this selfie on my phone.  I call it “Glimpses of Normalcy”.  (And I really hate the world normal.)  It is truly the best picture we have of him.To me , this picture hinted at a Garrett without Smith-Magenis syndrome.    




During these past two weeks of November though, I have been reading stories from other SMS families.  I started to look at this selfie as just that…an actual SELFIE.  Maybe this is how Garrett sees himself.    He may not be able to articulate his thoughts, but a picture is worth a thousand words. 

And, just yesterday, a father shared his daughter’s poem on the PRISMS Facebook group.  It “sounded” so much like Garrett and it moved me to tears. 

Although I  was supposed to be spreading SMS Awareness, Garrett’s selfie and Mallory’s poem taught me more about Smith-Magenis syndrome than I could ever hope to tell. 

Thank you, Mallory's parents for sharing this poem.  








Thursday, October 23, 2014

The Parrot: A Lesson in Speech Therapy



Today it’s hard to believe, but there was a time I was afraid that Garrett would never talk.  I discussed my worries with my friend Robyn.  Her son was born seven years before Garrett and was diagnosed with SMS when he was thirteen years old.

“Have you ever seen those talking parrot toys?” she asked me.

“Yeah!  It scares the bejesus out of me every time I walk through Cracker Barrel.” 

Not only did the thing flap its wings and turn its head, but it repeated whatever sound was made within 50 yards of its electronic bird ear.  Scary stuff!

“Years ago, my son got one for Christmas and it really motivated him to talk.  He got such a kick out of hearing that parrot repeat him.”

Although Garrett was almost six years old at the time, I wasn’t sure I was pining that badly for him to talk.  I could only imagine how scary a parrot was in the middle of the night; especially when my husband was away on Army vacations.    I almost called the cops on a talking Scooby once until I realized a burglar would not be calling out, “Scrappy?  Is that yoooou?”.  

I didn't have long to contemplate this dilemma because Robyn returned to my house with a package for Garrett.  And there was a talking parrot inside.

“Well, what do you think Garrett?”  Robyn asked.

“What do you think Garrett?  What do you think Garrett?” the toy repeated.

Garrett was mesmerized by the wings flapping and he tried to catch them.

“No, look here,” Robyn showed him the front of the bird.

“No look here.  No look here.”  The parrot wasn’t that scary when you were expecting it to talk.

“Hello Garrett McGrevy!”  Robyn talked directly into the bird’s chest.  I would never look at a pop up turkey timer the same again. 

“Hello Garrett McGrevy.  Hello Garrett McGrevy.”  Garrett giggled and tried to grab the wings again.

“You talk, Garrett and Mr. Parrot will repeat you.”  Robyn handed Garrett the bird.

“Parrot will repeat you.  Parrot will repeat you.”

Garrett held it directly in front of him, just like Robyn.  There was no doubt in my mind that Garrett was capable of making the sounds.  He had short words mastered, but he was not stringing phrases together except in sign language. 

He leaned down and pulled the toy close to his mouth.  I held my breath while my mind raced.  What would be his first words?

“You look too young to be my mother” would be a really good one.  Maybe he had some insight to share, like “It’s totally Dad’s fault you backed into his pickup truck.”  Or even a grudge he wanted to get off his chest: “I know what happened to my talking Scooby!”

Garrett took a deep breath.   I leaned in towards him.

“Squawk! Squawk!” he shouted.

“Squawk.  Squawk.  Squawk. Squawk.”  

The wings flapped, the bird head moved left and right, and Garrett laughed hysterically.

It was the only word he would EVER say to that parrot.  



Wednesday, October 1, 2014

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

Transitions are difficult for my son, Garrett, who was born with Smith-Magenis Syndrome.  I found a solution for getting on the school bus by luck (see this blog post here), but getting him home again has not been so easy (see Part I here).

The box with a prize worked very well for a couple of school years.  But when it started to go bad, Garrett’s behavior went downhill quickly.  It got to the point where he would just refuse to cross the road.  I would have to half drag, half carry him.   The bigger he grew, the less control I had of him. It wasn’t just embarrassing.  I was afraid that he was going to get hit by car. 

When things escalate to that level, it is best to completely change the routine.  Fortunately for me, we live across the street from our local high school.  And luckily, Garrett’s bus driver was sympathetic as was her supervisor.   So she started to turn around at the high school and pull in front of driveway. 

I still had to man-handle Garrett into the house, but I was able to threaten him whisper sweet, loving words of encouragement without the threat of getting run over. Once we got over the threshold, he turned the SMS off.  I just need to get him IN THE DOOR!

In those days, Garrett was still receiving physical and occupational therapy at Children’s Hospital.  At the end of these appointments, he was allowed to pick a sticker from a basket.  It was a huge motivator for him and I decided to try it with the bus transition.

We started with just a sheet of cheap stickers, like these that come free in the mail.






And hallelujah, it worked!





Jenny, the bus driver, started buying the stickers.   The fancy Hallmark store, holiday theme kind.  And Disney.  And Curious George.  And probably whatever else Garrett told her he “needed.”  


He was really excited for those!  Jenny would hand him a sticker, or sometimes he would want it on his shirt, and he would run up to our house to show me.  I didn’t even have to meet him on the bus steps.  He started “saving” them on his bed, dresser, closet wall and bedroom door.   




These Disney Easter ones are still stuck on the door 
almost six years later because 
stickers on beds, dressers and doors last forever







I would say this SMS Trick was good for about a year, maybe two. 

Then Garrett started having a problem deciding on which sticker:

                 “I want the Dora kite.  No.  The Map.  No.  Boots!  Give me Boots!”  OR
                                                     
                            “I want that one.  Two.  Can I have two?  Three.  I need three!!”  


It was time to mix it up again.  I went and bought envelopes and boring stickers.   I cut the stickers apart and put one sticker in each envelope.  When Garrett got off the bus, Heather or Mandy  (the new bus driver and aide) would give him an envelope that he had to open inside the house.   He could not wait to get in the house and open it.

And, like Jenny, they had to go get fancy –smancy stickers. 




Then Mandy started addressing the envelopes with Garrett’s name…eventually adding artwork…








soon to be on the front AND back.  





                                                                                                                                                                       
(Seriously, where do the transportation angels come from?!  I have visions of 30 year old Garrett hanging out in the bus garage soaking up undivided attention from the entire staff.)

The stickers were wonderful.  

Until they were not.  

Which leads us to “Getting off the Bus, Part III”, coming soon.  




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.  


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