Sometimes D. can pass for normal. Sometimes, we are out and about, and he is quiet and cooperating, and he makes almost appropriate comments, and smiles and says hi in response to a stranger's greeting, and I know they don't know anything's wrong. Sometimes I get to pretend my kid is normal.
Then there are days like today.
Today, I returned home with a car full of groceries. D. spied the ice cream bars, so I gave him one. Then he saw the tubs of Pringles. And that, my friends, is when all hell broke loose. D. wanted Pringles, and he wanted them RIGHT NOW, and he was NOT going to take no for an answer. And to make his point clearly, he threw himself into a fit the likes of which you have probably never seen.
Imagine 110 pounds of muscle coming at you, fists flailing, legs kicking, teeth gnashing, all the while screaming at a decibel that could shatter glass. The girls were in the kitchen, and I quickly yelled for them to get out of the way, leave the area. They didn't need to be told twice.
D. kept up his fit for over 20 minutes. Twice, Mr. WG came out of his office and took D. upstairs, and twice D. returned, still screaming. It was horrific, and it was a not-too-subtle reminder that while my kid may pass for normal at times, he is definitely NOT neurotypical.
This kind of fit is the kind of thing most people just don't get about D. It's the reason I don't want to go to events, outings, whatever -- because I'm tired, and because I can't bear to think of what it would be like if he pulled this in public. It's unfair to his sisters, his brothers, and frankly, to us. I love him so much, but when he gets like this, I just want to make him someone else's problem.
And then, of course, I feel terrible for that thought. Because as much as I didn't ask for this job, D. certainly didn't ask for this sentence.
Wednesday, October 07, 2009
The Dark Days
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9 comments:
I hear you loud and clear, sister.
I understand completely. Anneliese has these kind of tantrums with sensory issues--wind, rain, fear of dark places.
My daughter has Sotos Syndrome as well. At two years of age we are really beginning to see the power of these tantrums. Thought you might want to hear from someone who can relate.
My 8yo ds sometimes has these tantrums in public and they can be very difficult to stop. Even worse than having to deal with tantrums at his age is just dealing with the disapproving looks of others. Occasionally, I feel the need to explain (out of ds' earshot) that he has brain damage. It can cause a bad day, because you love your child so much but you feel helpless also.
I'm new to your blog and have read back a bit. I am moved by your story and especially by your wonderful sense of humor. I look forward to reading more posts!
Check it out! I sent you an award, I enjoy your writing very much. Your sense of humor is just like mine. ;)
Janis
http://www.sneakpeekatme.com/2009/10/taste-of-success.html
I haven't been blogging lately, but I'm still around and peek in whenever I get a chance. I SO feel your pain with this post. We are right there with you. I'm actually having Ms. Lynn join us at a restaurant soon so she can give us some tips on how to handle Jackson there. Last time we went out, I had to pay for the dinner of the person sitting behind us. It was bad. So, I feel you, sister!
I always feel better reading you, at least more prepared, yet reading things like this freaks me the hell out.
J seems to have a sweet disposition but lately there is a lot of yelling.
Who is the other Lisa with a 2 yr old with Sotos?
I clicked her name but no links.
Lisa b
I sent you some bloggy love...check it out :)
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