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. 

 

 

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!

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?

SMileS: An Update on "Going Bananas"

Remember the banana story from last year?

I was so proud to have found a hiding spot for Garrett's fix.

If you missed it, click here for the story.

Today, I have an update on that post:

He found the bananas.

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!

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!!

Marriage Issues for Special Needs Parents

It was the same fight that my husband and I have had a million times.

It was not about money. We never fight about money.  Charlie and I like money and we wish we had more.  He does not have expensive "man hobbies" and I am not "high maintenance", as one can clearly see from that blurry mugshot in the right hand column.

For us, the most stressful part of our marriage is parenting a special needs child. Thankfully, we are in agreement on the basic concept:

    Pick your battles-

Let the little things go and focus on the big issues

    Divide and Conquer-

Make sure both partners get a break

    Carry on-

Allow the typical siblings a chance be a part of their own activities and interests 


So, since we truly agree on The War Plan, you would think that the battlefield would reflect that.

Wrong!

This is what a fight looks like in our marriage that is managing 

Smith-Magenis Syndrome.   

          (And I use that word "managing" loosely.)

Setting:  Inside a somewhat new mini-van.  It has handle-bar scars down each side and an invisible spot on the left panel ( Go here for that story).  There is always a faint odor of spoiled milk.

Cast: Charlie, me and our three sons.

It's a beautiful day and we are cruising down the road. 

Suddenly, without warning, Charlie turns on the radio. 

Garrett has a meltdown.

Me:  What are you doing?

I look at him as if he had lost his mind.  I reach down and turn off the radio.

Charlie:  I can't listen to the radio in my own van?

Me:  No.

Even though the radio is off, Garrett continues to cry from the third row.  Our two sons in the middle row have their headphones on and their eyes glued to hand-held video games.

Charlie:  My mistake.  I thought I was the one making the payments.

The temperature climbed at least ten degrees, so I reached over and hit the button on my window.

Garrett:  No!  NO!  Too windy!  TOO WINDY!!

Charlie has the nerve to look at me as if I just lost my mind.

Charlie: What are you doing?

He uses the driver's control button to move my window back up.   My repeated thumps on the passenger button cannot over-ride the driver's lock.

I make a mental note to research this annoying feature before our next auto purchase.

Charlie:  Why don't you just turn on the air conditioner?

Me:  Why don't I just sit here and roast?

I cross my arms and turn towards the window...the auto equivalent of storming out of a room.

We do not look at Garrett. We do not speak to Garrett.  Instead, we turn on each other like sworn enemies.

Garrett increases the volume of his cries. Mario and Luigi continue their go-kart race; oblivious to the war raging on around them.

Charlie starts to hum the theme to the old television show, "Good Times."  A joke he believes is still funny after eleven years.

I turn towards him and start to hum "War is Hell on the Homefront, too."

Charlie shakes his head and shrugs his shoulder.  Clearly, T.G. Sheppard humor is lost on a man that was raised in New England.

Finally, Garrett finds a Jack-in-the-box.

The sound of "Pop Goes the Weasel" fills the van.

Garrett starts to sing.

Garrett:  Round and Round.  Monkey, monkey, weasel.  POP!!!!

The only song that gets the Garrett Seal of Approval.

Charlie turns on the AC and reaches for my hand. We both claim that we were not really that mad.  And we wonder if we give Garrett too much "control" in the car.  Maybe we should "lay down the law?"  But how can Garrett gain control of himself in such a small confinement?

More SMS questions we don't have answers to, but we promise not turn on each other during the next go-round.

We even say it with a straight face.

Today was going to be the first of my Friday's "SMileS" spot:  Pictures or videos of our kids with SMS and the amazing things they have accomplished. 

Of course, like any proud momma, I have a million of my son-but, I was also going to ask my fellow SMS Moms to share their pictures. 

However, yesterday my husband received some devasting news about his fellow Ohio National Guardsmen:

http://www.springfieldnewssun.com/ids-of-ohio-soldiers-killed-in-action-released-1355964.html

Our hearts go out their wives and children.

No one feels like smiling today.

The Scary Easter Bunny: Taking a Child with Special Needs to the Mall

There was a time when I was very concerned about what Garrett "should be doing".   Those were the days when my mantra  was "SMS was not going to define us."  I don't even know what that meant.   But saying it made me feel like I has some sort of control.

One of the things every toddler "should be doing" was going to visit the Easter Bunny.

                                                                                                                                                                       
Garrett saw the bunny on his first Easter.

                                 

                                                          And his second Easter.

So cute!  (Which is why Charlie and I were foolish enough to have another son four months after this photo.)

Then came Easter of 2002.  

Garrett was in full blown SMS Toddlerhood. But, it was okay because "SMS was not going to define us."  He was almost three and every three year old boy should go see the Easter Bunny.

Even if said toddler could not wait in long lines.  Or wait at all.  For anything.  Ever!

We had to get our picture taken with the Easter Bunny.  Had to.  And the only place we could see that bunny was at the mall.  So, we waited until Charlie's day off and planned our Man-to-Man Defense.  Two adults, one baby and one Garrett.  What could go wrong?

We got in line with our double seat stroller.  The baby was in the back, reclined and quietly drinking his bottle.  Garrett was in the front seat.  He reached out and hit the kid in front of him.  We backed up and Charlie stood between Garrett and the rest of the world.  Garrett cried out and tried to break loose of the seat belt.

Charlie pointed to the bunny.  "Look who it is Garrett!  Do you want to see the Easter Bunny?"  Garrett slapped his head.  We took that as a "yes."

"Look at the tree Garrett!  Did you ever see a tree in the mall?"  He squirmed.  He cried.  He slapped his head.  He bit his hand.  And we stayed in line.  "Look at the bunny's helpers.  Look at the flowers.  Look at the camera.  Do you want to get your picture taken, Garrett?"

Time stands still when you are in a long line with a three year old boy who was born with Smith-Magenis Syndrome.

Finally, it was our turn.  We unfastened Garrett's belt and lifted him out of the front seat.  His face was beet red and covered in some sort of tears-snot mixture.  Garrett took off running. Charlie chased him down.

I sat the baby on the bunny's lap and Charlie put Garrett on the other leg.

"Smile!" he told Garrett.

The bunny's helper snapped the picture.

"Great job!" she said and leaned down to hand Garrett a plastic bunny finger puppet.  I could not get there fast enough to block his arm.

Please, God, don't let him slap her.

Garrett took the toy and flung it towards Macy's.  The helper's mouth dropped open.

"Uh-oh!  You dropped your toy!"  I said and grabbed both his arms, pinned them to his side and marched him out of the Bunny's Hippity-Happy Tree House.

We got in a second line to wait for that  picture.

"Get on the Easter Bunny's lap and tell him what a good girl you've been!"  I turned around and saw a little girl in a size 4T wedding dress.  Apparently, her entire extended family had come to witness the Bunny visit.

"This picture is blurry."  The bunny helper showed me our photo.  Guess who was moving?

"It's fine."  I just wanted to go home.  No mother "should be doing" the bunny picture twice in one day.

"No, no.  We'll do it again.  You can hold him, Mom."

She made the bride get off of the bunny's lap.  Grandma made a comment about "some children learning to wait their turn."  I moved so that there was no coverage between her and Garrett's right arm.  Our baby went back on the lap, but this time I held Garrett and we sat in the chair next to the rabbit.

Garrett was handed two more plastic bunny puppets.  I grabbed them both and hid them in my fist.  Another picture and we were finally done.

The Baby looked thrilled.

                                                                   

                   Garrett was still red and flushed.  

But the most disturbing thing to me was the big guy himself.

The Easter Bunny.

Why was he smiling?  Didn't he know he was in a mask?  And why does this disturb me more than anything Garrett did that day?

This was our last Easter picture.  Ever.  

Our third son never saw the Easter Bunny.  Because I no longer care what little boys "should be doing."  This picture scared the holy jelly beans right out of me!

Anniversary of Smith-Magenis Syndrome Diagnosis

Sometime in this first week of April, it will be eleven years since Garrett was diagnosed with Smith-Magenis Syndrome (SMS).  I can not believe that I have forgotten the exact date, but I think that's a good thing!

Charlie and I were shocked at the news.  We thought Garrett's motor delays (the only SMS symptom obvious to us at the time) were due to his chronic ear infections (also a common problem for children with SMS). Charlie was one week into the fire academy and we had just learned that our second baby, due four months later, was going to be a boy.

The dream job.  Our perfect family.  Everything changed in one afternoon.


Finding support for our family:

Our pediatrician could not find any information about SMS in his text books.  He called Children’s Hospital Genetic Clinic and they faxed over one page about SMS. 

One page.   We were told that our toddler had a syndrome that was life altering from who we thought he was.

Eight paragraphs.  And the only information we had about this syndrome fit on the front side of an 8 x11 sheet of paper.

At least 200 really, really big words.  The majority of that information we could not understand.

Three pictures that scared us to death.  Those horrible “medical pictures.”  As strange as it sounds, I could not even see Garrett’s adulthood in color.  Every vision I had of him was in black and white with a bar over his eyes.

And hundreds of questions unanswered.   What was going to happen to us?

Finally, we located the PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) website.

It was early 2001 and we did not have “The World Wide Web” in our house.  My Aunt Patty found the website, but I cannot remember how….was Google alive eleven years ago? She printed off several stories written by parents and brought them to our house.

Encouraging stories (click here)!  With colored pictures!  Not only were these kids smiling, but there were no black bars across their faces. 

Then, we joined the non-profit organization.  And they mailed us a packet full of every back issue of their newsletter, “The Spectrum.”  (Past "Spectrum" issues are now posted on the website here.)

We pored over every single word of those articles.  It was surreal to go from eight paragraphs to pages and pages of information.

Information for Families

Research Updates

Medical Issues

And my favorite, stories from other SMS families.

 

What a difference from those eight paragraphs!!

We are celebrating our 11 years with PRISMS with a fundraiser to help with the cost of this year's PRISMS conference in Denver, Colorado (go here for more info).  Click on the First Giving box at the top of the page to make a donation in Garrett's honor.  Thanks!

Perpetual Parenting: Raising a child with Special Needs

Coming to terms with the diagnosis:

In the early days following our son’s diagnosis of  Smith-Magenis Syndrome (SMS) my husband, Charlie, found an internet support group on Yahoo.  He begin e-mailing other parents who also had children born with SMS.  

Within the first couple of days, a father of a teenager informed us that our pain would reappear every time our son missed a milestone; like driving a car or getting married. He ended this motivational speech with the comment that we should "prepare ourselves for a life of perpetual sorrow.”

Perpetual Sorrow!   Who would say that??

We stared at the computer screen.

“Bummer,” Charlie whispered. 

I swallowed the lump in my throat.

“Perpetual sorrow sounds like one of those shrines you see on the evening news with cars lined around the block,” he said.

I had visions of ketchup tears streaming from our wedding portrait.

“I don’t think that we want to live in perpetual sorrow,” he said. 

I nodded in agreement.  That wedding picture was the last time my hair and makeup were done, on the same day.

“Then we won’t,” Charlie declared and he turned the computer off.

It was a long time before we reached out to SMS families again.  

Moving on

Almost eleven years have passed since the diagnosis and two more boys were born.  I think it is safe to say we do not live a “life of perpetual sorrow.”  And that engaging personality? It’s true.  Garrett keeps us laughing despite his challenges.    

Although “perpetual sorrow” is amusing to us now, this certainly is not the life Charlie and I had planned. 

We already know we will be caring for our son beyond his childhood and into our retirement years. However, we prefer to call our unique situation “perpetual parenthood.” 

No, not the kind of everlasting offspring that lies on our couch and plays video games all day.  It’s the kind of parenting that requires constant supervision and involves some worrisome health issues. 

And perpetual parenthood will include Sunday dinners at the kitchen table.  My son will always be excited to see me walk through the front door.  And on every errand, he will manage to con Dad for a chocolate shake at McDonald’s drive thru.  We will have lifetime visits from Santa and party hats at every birthday.

What can be sorrowful about that?

Do you remember your first contact with another parent?  Was it a positive one?