Wednesday, April 14, 2010

A "Sense" of Urgency


Imagine a world where the sounds you heard around you were so loud, it left you practically debilitated. Imagine your fear of the dark consisted of more than the boogey man. Your parents consistently change light bulbs so as to avoid the inevitable burnout. Imagine a world where your senses are so heightened, you question every move, ride, trip, play date and vacation.


At one time, I imagined this world...now I live it. I live it with my son Scooter.


Scooter was a healthy 10 lbs. at birth. But almost immediately when we brought him home from the hospital, I realized there was something different.

He cried. He cried a lot. And when you would try to hold him, all he would do was fuss.

We blamed it on his eczema for a while, but after several prescriptions, I felt there was something more. Once he learned to speak (which was very early) the word "no" is all we heard.

Finally, one morning, Scooter began to ask me questions about a conversation I had with my husband the night before. Here was the odd thing: Scooter was in bed when we had the conversation; and we were down stairs at the time.

I began paying closer attention to Scooter's hearing. Sure thing, Scooter could hear. Scooter could hear real well. So well in fact that loud sounds began to bother him.

As Scooter grew, so did the problem. We always needed a plan B. Especially since we had 2 children. Luckily my older son was very thoughtful, and constantly looked out for his brother rather than complaining about what he was missing.

Doctors were very dismissive about his problem. After much frustration, I began my own research. Turns out Scooter suffers from Sensory Processing Disorder. While putting a name to the problem seems it may have solved things; the story doesn't end there.

See Sensory Processing Disorder is often associated with children who suffer from Autism or Aspergers Syndrome. And although it can stand alone, it is not recognized that way as of yet. In a nutshell...insurance won't cover it.

This post is not meant to be depressing; but rather informative. I am far from the only parent out there living this experience. My hope is to create conversation and to convince insurance carriers of the importance to reevaluate their decision and begin to cover this disorder.

There are middle men of course. Politics. And of without a doubt, money.

Everyday is an adventure with Scooter. An adventure I wouldn't change for the world. And while I can't protect him from all his fears; the hugs and kisses I am showered with daily let me know I helped shield a few.

If you would like to become an advocate, and help get SPD recognized, please visit this link and fill in the form. Every name counts.

Hugs To All. Sincerely, Mommy Maestro and Scooter



4 comments:

rachel... said...

You know, I have long suspected my oldest daughter has some mild sensory processing dysfunction. I've read a little about it, and so much of it sounds just like her (and like your Scooter, too). I'm glad you posted this.

bluecottonmemory said...

One of our sons has Central Auditory Processing Disorder - it affects how he processes hearing, tone, patterns. However, I get frustrated with the word "disorder" - just because people hear differently or feel differently, does not mean it is a disorder - they just respond and do things differently. Why is different always a disorder?

It is wonderful to post this - because these differences need to be discussed. I think you'll discover there's more people who live your experience!

Be blessed in your quest!

bluecottonmemory said...

One of our sons has Central Auditory Processing Disorder - it affects how he processes hearing, tone, patterns. However, I get frustrated with the word "disorder" - just because people hear differently or feel differently, does not mean it is a disorder - they just respond and do things differently. Why is different always a disorder?

It is wonderful to post this - because these differences need to be discussed. I think you'll discover there's more people who live your experience!

Be blessed in your quest!

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