The Bane of Beauty

>> Tuesday, March 8, 2011

Bug is beautiful. He really is a very pretty child and people comment on it. We agree, he is lovely. The problem is that he also has intense seizures and severe cognitive delays. But he is beautiful.

I have said it before and I will say it again: his beauty is a hindrance. People, including Doctors, see him and read his story and meet him and shrug it off. They shrug off the issues he has and they see his smile and his big blue eyes. They read the words but they insert their own version of reality. Even other special needs Moms talk to him like he should be answering them. They say things like: you know what I am saying, don't you? And they smile at him. Of course, he smiles back, but that does NOT mean he understood. I have been told that I just need to be consistent. Wow. Why didn't I think of that? Just be consistent. That eluded me.

And how much more consistent do I need to be when he sneaks into the closet to play with his feces? That is deception, and it is a sign of intelligence HOWEVER, the lack of 'ick' denotes a temporal lobe issue. The inability to tell good from bad, ick from awww, that's executive function, and that has not fully developed in him. He hasn't played with his feces in over a year so we hope he is done with that and his temporal lobe is developing nicely, but really, at any point, he could start up again. And THAT has NOTHING to do with bad parenting.

No, our society has equated beauty to perfection. And those two words are extremely dangerous things to put together. Bug is beautiful, but he is not perfect, and we do our best to help him and to teach him. He DOES have fairly severe problems, even people with Epilepsy say he has it badly and he does, but we can't think of it like that. He is a happy child and he does not always understand what is going on. But he does know that we love him and that we will try to protect him while letting him grow his independence. If one more woman says: Oh he knows. They will get an earful. And I will let THEM spend 24 x 7 with him. They wouldn't last a day alone with him. So, back off the judgments, he's my child and I know him better than you do. You can't say: God gave him you for a reason and then question how I raise him. Apparently, God trusted me, you should, unless you know better.

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Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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Diamond Potential Awareness Award
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