"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
Showing posts with label special needs siblings. Show all posts
Showing posts with label special needs siblings. Show all posts

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.  


Thursday, May 24, 2012


Graduation Sunday: Touching moments with my son

There is something about the end of the school year that marks the passage of time more harshly than birthdays or New Year’s.   A cruel reminder of how much time has passed since I graduated and how few years are left before my boys are grown men. 

At last Sunday's service, we celebrated those who have graduated from high school or college.   They get called to the front of the church and asked to share their accomplishments and future plans.  Inevitably, my mind becomes a human calculator.  I can’t balance my checkbook, yet I can subtract years and compare dates at the speed of light.  (That would be 299, 792, 458 m / s.)


I recall standing there for my high school graduation; when the one college graduate’s mother was pregnant with her.   Then, I remember that those high school kids where younger than Garrett is now that summer I was their pregnant bible school teacher.  It hits me that in exactly ten years my youngest son will be 18 and graduating from high school.

I stop doing the math. 

I look down at my youngest with his Alfalfa-Hair sticking up at the crown of his head. We were the only McGrevys at church that Sunday and he had my undivided attention.  That kind of attention is rare when you have a special needs sibling and he seemed to be enjoying every minute of it. 

After small gifts were presented to the graduates, they remained standing while we sang to them.  That is a fairly new tradition and it must be excruciating.  But they made me feel old, so I had no sympathy. 

The hymn began:

I was there to hear your borning cry,


I'll be there when you are old.


I rejoiced the day you were baptized,


to see your life unfold.


“This song always makes me cry,” I whispered.  The boy’s eyes bulged and his face paled at the full weight of that statement.

She’s going to start bawling and Dad’s not here.

 “Do you want me to go get you a tissue?” he tried to leave the pew.

I grabbed his arm.

“Sit down.  I’m fine.”


I smiled, yet he seemed unconvinced.

If you find someone to share your time


and you join your hearts as one,


I'll be there to make your verses rhyme,


from dusk 'till rising sun.


He started to pat my arm.  Actually, it was very similar to the way he pets Pongo Elmo McGrevy, the youngest member of our family. But I thought it was sweet.

When the evening gently closes in,


and you shut your weary eyes,


I'll be there as I have always been,


with just one more surprise.


It is easier to hold your emotions back when two big blue eyes are staring you down, waiting for your head to explode.  For the first time in history, I did not cry during that hymn. 

The graduates returned to their seats.  I didn’t dare look at their mothers.

My son leaned over and whispered, “Remember when I was born?”

I put my arm around him and pulled him close.  I nodded, afraid to talk and ruin my tearless accomplishment.

He leaned over and whispered again, “Was I covered in blood?”

Gross.  I’m not sure I can last another ten years.




Here is a you-tube recording of the song. Go ahead and listen without crying. I dare ya!




Friday, April 27, 2012

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!!




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