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I Changed My Mind

9

March 9, 2010 by Marj Hatzell

I’m still not sure WHY I’m doing this. Perhaps because as positive as I am and as hard as I work for my kids, there is still often an ugly side to their diagnoses.Or perhaps it was so some day I can see how far we’ve come.  Most days we make it through just fine. Other days I collapse into my bed at the end of the day with sobs and cry myself to sleep. It’s just the way it is.

When Bug Boy has a bad day we are all on edge. Sometimes i equate it to walking on egg shells. His OCD gets a bit out of control at times and as a result he often has red, chapped hands (from the constant hand washing or hand-licking. Don’t ask) or red lips (from licking them compulsively).  When he is stressed or anxious, his poor, fair skin bleeds.  Ouchy.

When Bugaboo has a bad day, he bites himself. Sometimes he tantrums or aggresses towards others, but typically he just uses his hand for a chew toy. We’ve purchased copious amounts of chewy tubes for him and he still bites his hands when he is angry or frustrated.  The fancy schmancy term for this is SELF INJURIOUS BEHAVIOR.  Basically, he hurts himself. It stinks.  Turns out we’ve noticed a pattern.  Bowels out of whack?  SIBs.  Holding “it” in?  SIBs.  Yes, that’s right, my life once again revolves around poo.  Or lack thereof.  Or too much of it. Keeping that fine balance between them is difficult work.  Thank you, miralax.

Anyways, I debated about whether or not I should post these. Last week I was particularly upset after a day that included EIGHTY-TWO episodes of Self injurious behavior from my Bugaboo. I took pictures to document it.  They didn’t turn out great, but I think you can get a sense of the bruising (from the self-inflicted bites), the teeth marks and the bleeding. Or not.  But I think you can get an idea, judging from the pics of his red, raw, bleeding, bruised appendages.  Sigh.

Like I said, not sure of what I’m trying to accomplish here.  Perhaps I’m over sharing.  I do think, however, that you need to see it.  The good, the bad and the ugly. This is the ugly.  But today?  Today is the good.

I mean, where else could you see a kid in a pull up with Uggs on eating his boogers? HERE, THAT’S WHERE.

9 thoughts on “I Changed My Mind

  1. She Started It says:

    LOVE the Uggs. And that he enjoys boogers in them.

    Glad today is a good day, and I hope for many more.

  2. I should mention that he was out cold when I took these photos. He ain’t too fond of having his picture taken, if you catch my drift.

  3. kwombles says:

    Sharing the realities of autism is just that: all of it. We should be able to present our realities and the realities of the difficulties our children have to deal with. We shouldn’t sugarcoat it; we just shouldn’t make ourselves martyrs in the process. You’ve not done that; you’ve shown your concern, your pain for your child, and his pain, in an honest way. Thank you.

  4. Amanda says:

    I love the pen on his belly. A common occurrence in our house. What is it with the poop (or lack thereof) and behavior link? We have that too.

  5. Kassi says:

    aww poor little guy! Poor momma too!

  6. Sometimes, we do just have to be real. And sometimes real his hard and painful. My real is that a lot of things we chalked up to “nervous habits” with my 10yo are probably tourettes.

  7. lora says:

    I think showing the bad in any part of life is just as important as showing the good. I think what you did here was brave. I think what you do every day is brave.

  8. Jeremiah says:

    Wow, this article just made me incredibly sad. I hope your son finds his true self and can be content in this life.

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