Sensory Processing

January 14, 2010 on 8:45 pm | In Down syndrome, Joey, Duel diagnosis, Sensory Processing Disorder | 1 Comment

I’m so behind on posting updates, especially about Joey! Last week, I went to a PPT for Joey regarding the Sensory Procesing evaluation that his school sent in a specialist to do at the begining of the school year.

The evaluation was performed by an Occupational Therapist that specializes in kiddos with sensory processing difficulties, and also by Joey’s therapy staff at his school. With all the tests/ evaluations that were done, they came to the conclusion that Joey does indeed have the Sensory Processing Disorder/ Sensory Intergration Disorder.

I knew in my heart that Joey had this sensory disorder before they even diagnosed him. After reading several books on it over the summer, I just knew it. I’ve seen so many other kiddos who have Down syndrome who also have sensory problems but there’s times that Joey just “shuts down” when he gets over stimulated and it’s so sad. It breaks my heart that so many everyday things that don’t bother most kids, upset Joey the way that they do.

Certain sounds/ activities, he squats down towards the ground and covers his ears. It really does break my heart. But thankfully, the OT who performed the evaluation gave many ideas/ strategies to use with Joey to help make it less sensitive to activities that may overwhelm him.

I’m so grateful to have such an awesome, supportive school staff that is willing go out of their way to help Joey out!

I’ve also started taking Joey to weekly feeding therapy appointments at CT Childrens Medical Center and she is also going to be working on sensory related therapies with him as well.

Xmas Pics 2009

January 14, 2010 on 12:00 pm | In Photos, Ohio, Family, Montage, Christmas | No Comments

Just a few weeks late but here are our pictures from our trip to Ohio for Christmas. Enjoy!

Make an on-line slide show at www.OneTrueMedia.com

Poor Jo-Joe

January 14, 2010 on 10:38 am | In Joey, Joey's ENT, Neurologic Hearing Loss, Hearing Aides | 2 Comments

Yesterday, I took Joey to an appointment with his audiologist to have the molds made for his new hearing aid. Thankfully, the audiologist’s office is in the same town that my husband works so he was able to meet us there.

As soon as I pulled into the parking lot, Joey KNEW that he was going to an appointment of some sort and the poor little guy started acting crazy before I even got him out of the van.

Patrick pulled up just a few minutes later which helped to calm Joey down a little as we waited to be called back. The audiologist came out and greeted us and walked us back to her office. As soon as she came out and Joey saw her, Joey gave her the look of the devil, he’s one smart cookie, hahaha!

Before she took the molds, we went over what his hearing aid will look like and other tidbits we need to know. We even got to pick out the colors that the hearing aid can be! The mechanical part that goes around the back side of his ear will be blue and the part that actually goes into his ear will be blue and yellow swirreled (Down syndrome awareness colors!).

After going over the logistics, we got to the tough part, getting the mold of Joey’s ear…

The minute Patrick picked him up, he started screaming and screaming and screaming….

Once the foam was put in Joey’s ear, no one could touch it or Joey’s ear (pretty much had to have Joey sit still) for about 4-5 minutes while it hardened and Joey didn’t like that fact at all. I’ve only seen him flip out that bad one other time and that’s when he got an echocardiogram.

Poor kiddo screamed until he was pretty much dry heeving. Even after she took the mold out, he still wasn’t happy so Patrick took him out to the car while I finished up in the office.

At least the hardest part is over, next appointment on Febuary 3rd, we go back to pick up the actual hearing aid then learn how to use it…..

Go Maddy!!

January 13, 2010 on 10:09 am | In Down syndrome, Music, Siblings & DS, TV Shows | No Comments

A fellow blogger, Barbara Curtis, who also has a son with Down syndrome, actually she has FOUR sons who have that beautiful extra chromosome, well, her daughter, Maddy was on American Idol last night and was AMAZING! Maddy recieved a Golden Ticket from the Idol judges so she will be going on to Hollywood!

Before she auditioned, there was a nice little segment on Maddy and her brothers :)

The keys to life….

January 6, 2010 on 9:38 am | In Beverly Beckham articles | No Comments

I just love articles written by Beverly Beckham, especially her articles about her grandaughter, Lucy who has Down syndrome. This article isn’t about Lucy, but I really enjoyed it and thought I would share it with everyone.
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Songs: They’re the key to life
By Beverly Beckham, Globe Columnist | January 3, 2010

I had an idea a while ago about writing a book called “Everything I Know I Learned from My Garden,’’ full of pithy if not original insights. Growth can’t be rushed, for one, or maturity counts, and it really does matter where you’re planted.

I scribbled some notes, but got predictably sidetracked. Then winter came and my garden died. (I know: It’s not really dead. Which is another life lesson: Things are not always what they seem.)

Still, I abandoned the project.

Now I’m glad I did because it struck me recently that everything I know I learned not from my garden but from songs. Old songs, new songs, Broadway songs, kids’ songs. Ballads. Rap. Rounds. They’re all packed with life lessons.

“Just what makes that little old ant think he’ll move that rubber tree plant; anyone knows an ant can’t move a rubber tree plant, but he’s got high hopes.’’

“If you’re worried and you can’t sleep, just count your blessings instead of sheep.’’

“Row, row, row your boat.’’ “A spoonful of sugar helps the medicine go down.’’ “A dream is a wish your heart makes.’’ “I can fly! I can fly! I can fly!’’

All incredible motivators.

There are songs of affirmation:

“What a difference a day makes.’’

“Whatever will be, will be.’’

“Little things mean a lot.’’

“Time heals everything.’’

“There will never be another you.’’

“Give a little whistle and always let your conscience be your guide.’’

And injunctions:

“Tap your troubles away.’’

“Think happy thoughts.’’

“Make someone happy.’’

“You gotta have heart.’’

“Big girls don’t cry.’’

“Give ‘em the old razzle dazzle.’’

“Wrap your troubles in dreams and dream all your troubles away.’’

Some songs are wise:

“Love changes everything.’’

“There’s no place like home.’’

“You can’t get a man with a gun.’’

“Try a little tenderness.’’

“The best things in life are free.’’

“You’re never fully dressed without a smile.’’

And some are invitations:

“Life is a cabaret, old chum, come to the cabaret.’’

“Climb every mountain, ford every stream, follow every rainbow, ’til you find your dream.’’

Want pure nostalgia? There’s this.

“The way you wear your hat

The way you sip your tea

The memory of all that

No, no, they can’t take that away from me.’’

Want sad?

“Pretend you’re happy when you’re blue,’’ is sad.

“It’s a hard-knock life,’’ is true, but so is its antithesis: “And I think to myself, what a wonderful world.’’

Music, like a garden, is full of contrast.

“Smile though your heart is aching.’’

“The best is yet to come.’’

“The sun’ll come out tomorrow.’’

“Breaking up is hard to do.’’

“In the wee small hours of the morning, that’s the time you miss him most of all.’’

“It’s a party in the USA.’’

“It’s my party and I’ll cry if I want to.’’

“Some days are diamonds. Some days are stones.’’

Songs and life lessons, all.

Canton resident Beverly Beckham can be reached at bevbeckham@aol.com.

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