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?

Going Bananas

Our son, Garrett is obsessed with bananas.

We believe he is part monkey.

Garrett will even peel them in one piece, the way a monkey will do. So, in an attempt to make the bananas last more than one day, we hide them.

The first hiding place was under the kitchen sink, next to the dish soap. I did not know Garrett was watching me from his breakfast chair, until I found the pile of peels on the couch.

The next hiding place was in the cupboard, behind the cereal boxes. Garrett sniffed those out like a K-9 on the drug force.

They went from the cupboard to the bread basket, to behind the toaster and then inside the big soup pot. Garrett found his fix every time.

“This is it,” I told Charlie as I deposited the bunch of bananas behind the water cooler, “there are no more hiding places left. We have to be careful and not let Garrett see us reach behind here for his golden sustenance.”

So, I started placing a banana on the table next to his peanut butter and jelly sandwich before I called Garrett to the table. I am happy to report that we have managed to stay this one step ahead of Garrett for almost six months now.

But, occasionally, Garrett will come to the kitchen before I am ready.

“Where’s my nanna?” Garrett asks.

“I think Dad left one on the coffee table,” I reply.

When Garrett runs to the living room, I pull a banana out from behind the water cooler and toss it on his plate.

“There’s one!” Garrett will shout when he returns.

During the last few months, I’ve sent him on a banana hunt to the laundry basket,to the bathroom sink and under his bed-just so he does not see me reach into the hiding place. That may sound cruel to some moms. Those other mothers who have not found piles of yellow skeletons in their basket of needlepoint projects, that is.

This morning, I completely forgot the banana.

“Where’s my nanna?” Garrett asked with cheeks already full of PB and J.

“I think we need to get some at the store,” I replied.

For the life of me, I could not remember if we had any left. It was better not send him on a wild goose chase and give him false hope.

Garrett sighed and stood up. He turned to the window.

“What are you doing?” I asked.

“I look out the window,” he answered.

Garrett covered his head with the curtain.

“You get the banana,” he ordered.

I never really know who’s fooling whom around here…

The Biology Lesson

“Did you know that the platypus is the only mammal that lays eggs?” my eight year old son, Patrick asked me. Sometimes I fear I may have given birth to the next Clifford C. Claven.

“What’s a mammal?” Brennan asked. At six years old, Brennan still believed I knew all the answers.

“A mammal is an animal that feeds its baby milk,” I replied.

“Like a cow,” Patrick added.

“Not just cows,” I was happy to have one up on Patrick. “So do cats and dogs and horses and pigs-“

“Cats! Cats have milk?” It was obvious Patrick did not believe me.

“Yes.” I reminded him of the litter of kittens we saw taking their lunch break.

“Oh, yeah,” Patrick nodded.

“Yuck!” Brennan held up his hand. “I do not want to drink cat-milk!”

Patrick laughed and shook his head, “Don’t worry Brennan. Humans drink
cow-milk.”

“No, human babies do not drink cow’s milk,” I was thrilled to be shooting Clifford down twice in one afternoon. “Babies drink from their mom just like the kittens.”

“What?” Patrick was dumbfounded. “No way.”

“How?” asked Brennan.

I was like a deer in headlights. I should have noticed where this line of questioning was headed. The victory of being the smart one was suddenly bitter. I couldn’t say the words. And of course, visual aides were out of the question.

“You know,” I looked at them with raised eyebrows.

“No, seriously. I don’t,” Patrick looked so innocent.

How could those boys not notice my cousin and her baby at the last family get-together? I’m sure the breastfeeding did not escape my husband’s attention.

I pointed my finger in front of me and decided to go with the visual aides after all. Patrick’s eyes bugged out of their sockets.

“No!” he cried.

Brennan covered his mouth with his hands and ran into the bathroom.

“Did I…” Patrick could not finish the rest of sentence.

“No, you took formula from a bottle,” I answered.

“What about me?” Brennan peeked around the corner.

“You all were feed from a bottle.” I could feel the sense of relief in the room. “Well, except for Garrett.”

There was a gasp. Brennan turned white.

“Is that why Garrett has SMS?” Patrick whispered.

“No, that is not why Garrett has SMS.” I tried not to laugh. For a brief second, I thought about discussing Garrett’s problems of latching on and how I thought something was wrong with me. I decided it would be more enjoyable if I saved that conversation for their teenage years.

Feeding problems are common with Smith-Magenis infants. But, we did not know Garrett had SMS until he was eighteen months old. By that time, I had lived many more serious concerns than my inability to breastfeed: Why is he not sitting up? Why is he not crawling? Why is he not walking? Why is he not sleeping? It was so “helpful” when our first pediatrician’s answer to every missed milestone was “you are holding him too much.”

“Garrett has SMS because that is how God made him,” I replied.

It is my canned response to that question. But there are moments when that does not satisfy my question of: “Why him? Why us?” But, I had dishes to wash and laundry to fold, so we all went about the rest of the day.

At bedtime, I caught Brennan crying in his bed.

“What is it now?” I asked. Brennan likes to pull out all the drama to delay the inevitable.

“It’s Garrett,” he wailed.

“Did he break one of your toys?” I asked.

We put locks on Patrick’s and Brennan’s door. They do have a right to have their things NOT destroyed…but, if they forget to put the lock on and Garrett “plays” in their room…who is to blame? It’s just one of the many steps in The SMS Dance that seems to constantly trip me and Charlie.

“No.” Brennan continued to cry. “I just can’t believe,” he paused and took a deep breath. “I can’t believe,” he sobbed some more.

Finally, he collected himself.

“I can’t believe my brother is a mammal!”

The Accident

I had to go home and change my clothes. Somehow I had managed to get all sweaty at the gym. I try really hard to stand against the wall and blend in. It’s a trick I learned in Junior High, but no longer easy to accomplish since I’m in my thirties with a personal trainer.

After I changed and enjoyed a healthy (code for “flavorless”) lunch with Charlie, I headed out the door for work. I tossed my laptop in the trunk and put my purse and bottle of water on the passenger seat.

The next few details are a little hazy.

I know I started the van.

I remember cranking up the radio.

Then there was a deafening “SCREETCH” and a jolt that stopped the van.

At the same time, I remembered Charlie’s pickup truck was also in the driveway. And I instinctively knew I had hit it. Probably something I learned from reading all those Nancy Drew books when I was a kid.

The damage was not as bad as I had expected. I really thought there would be a busted tail light/ head light combination. Apparently, my van’s side panel rubbed up against Charlie’s running board and shaved a couple inches off of it. The black shavings and one chunk of plastic lay on the ground.

There were not any scratches or dents or even broken glass. I think those step stools attached to trucks are just for show, anyway. And it was on the passenger side (my side) and really would not affect Charlie’s travel experiences in his truck. I was not worried.

I went inside the house to break the news to Charlie. Several of my girlfriends have questioned this move and I really can’t explain it. My usual intuition would be to lie and hide the evidence. All I can think is that I must have been in shock from the accident.

Thankfully though, Charlie was not mad. I know he was not mad because he informed of this at least twenty times.

“I’m not mad,” he stated for the fifth time as he walked around the van, in four inches of snow while wearing his slippers. “I’m not mad. I’m not mad. I just don’t know why. Why did you hit my truck?” He walked over to the truck. “There is plenty of room to get around it. I’m not mad. Can you just tell me why?”

There is no defense when you hit a parked vehicle. Ever.

“I’m sorry,” I said, “I guess I just didn’t look.”

“I know you didn’t look!” he yelled and then told me he was not yelling.

I do not know if he was trying to convince me or himself.

“I’m not mad. I just want to know why you didn’t look.”

Charlie walked back to the van. “Do you see that?” he asked.

I didn’t.

“Yes,” I replied.

Charlie rubbed at an invisible spot on the van. “That is going to rust,” he informed me.

I am pretty sure the whole van is going to rust. Someday. But I didn’t point out that fact.

“I’m not mad. I just want to know why you didn’t look.”

I let the truth slip out.

“I was turning up KC and The Sunshine Band,” I said.

“Disco?” he asked. The look he gave me told me it was the wrong answer. The shock was still affecting my common sense.

“Actually, I think KC and The Sunshine Band are more ‘funk’ than ‘disco’,” I corrected him.

And then, I'm almost certain, I saw him get mad.

Happy Birthday Dr. King

I was attempting to clean the kitchen table before supper.

More like moving The Pile to the counter in order to make a hole for the plates, but I call it “cleaning.” My first grader, Brennan, decided to help by unloading his backpack from the school day. He pulled out a paper birthday cake and laid it on the spot I had cleared. “Happy Birthday Dr. King!” it read.

“Who’s Dr. King?” I asked him.

“Well, he’s a guy that said people could ride on a bus,” Brennan replied.

I was pleased with that answer. Brennan tends to miss the morals of a story and focus on the horrific details.

“Oh!” he exclaimed, “you know what else?”

“What?” I was excited to see him excited.

“He got shot!” And there it was.

“Yeah, I know. That’s very sad,” I answered.

“Do you know what happened to the bad guy?” Brennan asked. “He went to jail. Where’s jail? What do the bad guys eat in jail? Where do they sleep? I wonder-“

“What else did Dr. King do, Brennan?” I asked.

“Do you want me to read the book?” The birthday cake had a book stapled to the bottom of it.

“Sure.” I said and sat down at the kitchen table. It is amazing how far his reading skills have come since the beginning of the school year.

“Dr. King was a preacher at a church,” Brennan began.

“BIRTHDAY CAKE!” It was as if Garrett dropped from the ceiling.

He snatched the paper from Brennan’s hands and began to sing. “Happy birthday to me! Happy birthday to Garrett, happy birthday to-“

“Garrett!” Brennan cried, “It’s not your birthday. “

Brennan grabbed for the paper. Garrett turned away and held the cake up higher than Brennan’s reach.

“Birthday cake! Yummy, yum. I’m going to eat,” Garrett sang as he made an exaggerated display of bringing the cake to his mouth.

“It’s mine!” Brennan hit Garrett in the back. Garrett swung his leg around in a counter attack and kicked Brennan. I stepped between them and grabbed Garrett’s wrist.

“This is Brennan’s homework,” I said to Garrett and took the paper back.

“NOOOOO!” Garrett screamed. He crossed his arms and stomped his right foot. “Humph,” he snorted for added effect.

And then Garrett turned and stomped off towards the stairs. No doubt in a search for another item of Brennan’s that he would wave above his head and begin Round 2.

Brennan turned to the second page. It was a picture of two hands shaking with a dove flying above them.

“He believed that all people should live in peace,” Brennan read.