"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

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.  

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