The Haircut –  A Day In The Life Of a Child With Joubert’s Syndrome

List: Posted: 01/13/11

Sometimes, special needs kids don't get the respect they deserve. Sometimes people assume that they may not be aware of particular things around them. Tonight Derek, my 10 year old with Joubert’s Syndrome, reminded me that I should never put anything past him.


Earlier today, I gave the boys haircuts. I'm very proud of myself. I have learned how to cut their hair by watching what all the stylists do when they go in for haircuts. At some point I decided I wanted to try to cut their hair on my own. This decision was based on the fact that after every haircut they've ever gotten, I have always come home, got out my scissors and evened out sideburns, or the hair on the back of their necks. Whatever the reason, my child’s haircuts mostly come out lopsided.


And it's not the stylists fault. None of my children do a good job sitting still, and they ask the stylists so many questions that I wouldn't blame the stylists for lopping off their own ears right there on the spot. Many times I have considered cutting off my own ears because I couldn't take another question about why strawberry jelly is red or why the neighbor smokes "rizzorettes" (that's how Derek pronounces "cigarettes").


For my haircutting extravaganza, I neglected to buy a water spray bottle. I decided to improvise, so I got a big blue cup and just kept dipping my comb in the water over and over again. It worked okay, but it was a bit like waiting for the sun to melt an icicle hanging from the roof to fill a five-gallon bucket with water.


Everyone did pretty well, and their haircuts looked great, if I do say so myself. After that, we showered the boys and got out the door in time to make it to Family Fun Night at the golf course. Family Fun Night is a trial of a parent's patience. It's fun, but waiting for a small golf ball to make its way from a tee to a hole is downright painful when the golfer is 4 years old and would rather sit in the golf cart and pick his nose.


When we came home from playing golf, we were hot and sweaty. Reaching for a cup of water that sat on the countertop, I asked Darryl, "Did I fill up this cup earlier?" Not even waiting for Darryl's response I took several big gulps. I drank half the cup. As I was about to take another drink, Derek said nonchalantly as he casually walked past me, "It's the haircut water mom."

 

I would have spit it out on the spot had I not already swallowed it. I thought, "maybe Derek's wrong. I hope he's wrong." I walked into the kitchen further into the bright light and sure enough, the water was like a wayward home for lost hair clippings. I just know I'll be coughing up a fur ball soon. I have a newfound respect for cats tonight, and I'm not a cat person.


Next time Derek makes an observation, I will take a little more time to listen to his response and realize, "that kid knows what he's talking about."


~ Kelly Seymour
Mother of Derek (Joubert Syndrome) Damon and David, RARE Blog contributor

 

 

For more info on Joubert's Syndrome and to read the full blog, visit www.crdnetwork.org/blog/

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