"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, 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.  


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.   



Wednesday, September 12, 2012

The Backpack


“Can we go camping?  Can we go camping?” 

This weekend, Garrett found his old Barney video, “A Camping We Will Go” from the first season of Barney.  It was episode 22 and originally aired on May 5, 1992.   Yes, I googled it. 
It’s the one where Tina (no relation) gets lost in the woods, hugs a tree and blows a whistle.  I’m sure you’re familiar with it.  No?  Well, come to my house because Garrett can act the whole show out for you.  He has watched it 10,000 times.

“WEEEE!  WEEEEE!” 

“What was that?” Charlie asked.

“Garrett did you find a whistle?”  I shouted out the window.  I was certain I had tossed the twenty five Yo Gabba Gabba whistles Aunt Patty had thoughtfully bought for Garrett’s birthday piñata.

“I hug a tree!” he shouted back to me.  “I go camping!”

“It’s your turn to sleep in the backyard,” Charlie reminded me.

“Sorry, it’s a school night.”

“Can we build a tent?” Garrett asked.

“No, but I will put the sleeping bag on your floor.  You can camp out in your room.”

“Can I build a campfire?”

“Not in the house, Garrett.” 
 
It continued all day Sunday.

“Do you have marshmallows?”

“No, Garrett.”

“Awww.   Do you have a flash light?”

“No, Garrett.”

“Awww.  Do  you have smores?”

“I already said no marshmallows and no campfire.”

“Awww.  Can I pack a bag?”

“That you can do!” 

Garrett grabbed his backpack and went to his room to pack his valuables.  I enjoyed the ten minute reprieve from Twenty Questions.

On Monday morning, I woke my younger two sons up for elementary school.  Autumn has finally arrived in Ohio and I grabbed my flannel PJ shirt to wear over my cotton nightgown.  The pink snowman shirt didn’t exactly match my yellow flower nightgown, but no one was going to see me.

“Shh!  Quiet!”  I kept nagging the boys.  If anything positive has come with SMS puberty, it is that Garrett is sleeping in late.    

“No, don’t flush the toilet!  You can hear the pipes upstairs.” There are 90 minutes between the elementary bus and Garrett’s middle school bus.

“No, don’t wash your hands!  Use some hand sanitizer.” I like to spend some of that time alone with my coffee mug.

“Here’s your backpack.  Hold onto the screen door.  Don’t let it slam behind you.”  Two down, one still in bed and the coffee was done brewing.

The boys came back inside.

“Did you miss the bus?”  Now I was going to have to wake up Garrett and drive them to school.

“No, it’s cold outside.  We need our jackets.”  Off came the backpacks.  I dug through the closet and found the hoodies.    There were coat hanger marks on the shoulders because the jackets had been hanging since May.  I pushed them down as if that was the equivalent of ironing them.

“There ya go.  Looks good!  And don’t forget to watch the screen door.”

Gone again.  Time for that coffee. Finally.

I turned around and saw my youngest son’s backpack next to the closet. 

Oh, no.  I was not driving to school.

I snatched it off the floor and raced outside.  The screen door slammed behind me.  I shouted my son’s name while waving the bag over my head.  The concrete felt like ice on my bare feet.  Good thing I had my pink flannel snowman shirt on. 

I shouted his name again just as he reached the bus steps.  He turned around and looked at me. 

There are no words to describe his expression.   He did not acknowledge me in any way.  No words, no smiles, no positive…or negative…movement of his head.  He just turned around and walked calmly up the steps. 

And I saw his Mario backpack on his shoulder.

I brought the bag in my hand down for a look-see. 

Spiderman. 

I was holding Garrett’s “camping backpack.”

I hate that purple dinosaur. 
 
 

Thursday, June 7, 2012

SMileS: First Visit to the Ocean


SMileS Friday: SMS Photos or videos that make us smile

I asked other SMS moms to share their favorite stories and photos for my Friday posts.  My friend, Heather, sent in these pictures of her son's first walk on the beach.




First Visit to the Ocean

Heather's son, Chris, was born with Smith-Magenis Syndrome and like many children with this diagnosis, he has sensory issues.  In the spring, Heather's family took their first vacation to the ocean.  When they got to the beach, Chris was uncomfortable walking barefoot on the sand.


So, Dad took Chris's hand and helped him to the water.
Chris tried to stay up on his tiptoes in an attempt to avoid the sand...a feat that I could not manage for very long!



Heather writes, "By the end of the day, he was a pro at the beach thing and even stopped in all of the sandcastle building madness to give me a cheese face!"






Standing in the sand and smiling! 

Way to go, Chris!



If you have a story you would like to share on an upcoming Friday blog, e-mail it to me at tmcgrevy@yahoo.com.  If you have photos to go along with the story, that's even better!

Thanks for sharing, Heather!

Friday, June 1, 2012

SMileS: First Day of Summer Vacation

SMileS Friday: SMS photos or videos that make us smile


First Day of Summer Vacation


Yesterday, all three of my boys were home from school at 3:30 in the afternoon...and officially on the start of summer break.

Approximately three hours later, this is what I found in the upstairs hallway:









"What happened?" I asked, softly and without added swear words.

"I need to wash my hands."  I heard a response behind me.

I turned around to find this sight:












"Why, yes," I replied, softly and without added swear words. "It does appear that you need to wash your hands, Mr. McAwesome."

There are 82 days until August 22nd, 2012.

Would you like  to guess what day that is?







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