Sunday, February 06, 2005

Nov 17, 2004

It’s an actual quiet moment in the house. Gio is playing video games--Atari classics, no less--in his room and hubby is in our room reading on politics and the war. This is by no means common. My husband hates reading. He was supposed to be in there doing some design work, but I’m not chiding him too much. On the one hand, he’s procrastinating and we both know it. On the other, he’s learning about something important. Who am I to judge him?

I’m starting to look forward to this journal. I try to think about things that I should put into it. Gio’s more effective use of sentences--not to mention his sudden lack of interest in them. Should I talk about the frightening state of my finances? I wonder how many people out there with special needs children can actually afford them. For every meal my son eats, I make probably three. Or buy them. He’s food specific. Or highly intelligent in that he knows my limitations in the kitchen and won’t settle for anything dangerous. Of course, occasionally, I think, he’s not specific, he’s spoiled. Then I try to make him eat what we have.

I’d say 9 out of 10 times, I give in before he does.

The truth is my son is 100% capable of starving to death before he eats what he doesn’t like. I know people think I exaggerate, but until they have seen their kid go three days on water and the occasional few bites of rice, they don’t have a say. There are days when I beg him to eat. I’d make everything in the house if he’d only eat. The doctor once told me that if the kid doesn’t want to eat, I shouldn’t make him. He’ll come when he’s hungry.

I found out last year that my son also has what’s called apraxia by speech, which affects the mouth muscles. As well as dispraxia of the tongue. Which is rather like having a door that opens into another door and the one won’t allow the other to be open at the same time. He lacked control of his lips, as well as control of his tongue, in different ways. To complicate matters, it seems that the apraxia was caused by the fact that he has an atypical facial muscle arrangement. He didn’t know how to control the facial muscles because while most children learn by mimicking, when he mimicked, different things happened and he didn’t know the difference. Worse, the muscles in his jaw and cheeks were very weak, so chewing was primarily a problem.

His tests proved that Gio had chewing strength of maybe two minutes, which was why he’d stop eating after a few bites and run away from the table. I tried often to make him eat more, which would make him lock down more. The oral therapist explained most people chew for about thirty mintues. Since he maxxed out at two minutes, it made it difficult for him to eat. Leaving me to realize that all the times I’d gotten frustrated and took his food away, I’d left him hungry. My child was running around starving because I’d been so impatient. So horrible of a mother, I didn’t even realize. I think it took me days to stop thinking that.

Well, to stop thinking it all the time.

I have issues with guilt, as you’ve no doubt noticed. My son is both the most incredible part of my life and the most difficult. He tries so hard to communicate, and I feel worse for having moments of jealousy because other parents have two and three year olds who talk all day long. Who jabber and make their parents crazy. Who can tell their mothers if something hurts, if he’s hungry or tired or happy. What I wouldn’t give to hear my son say he’s happy.

But he hasn’t.

It took him until he was four years old to call me Mommy. He was five when he first said “I love you.” He was repeating after me, which occasionally takes the glow off if I’m being painfully honest, but then he wraps his skinny little arms around my neck and breathes in my ear and I can feel his smile on my cheek and I know he loves me anyway.

They used to tell me my son would always be in a world of his own. That I’d often feel left out, that there would be times when he doesn’t even know I’m there. But I don’t think that’s true. I think that all the heartache is worth it because honestly, I am his world. And he’s mine. So, I live with the mad repetition of cartoons and his favorite catch phrases, with the demands of money I don’t have and things I can’t fix because he lets me in his world everyday. I shudder to think what it would be like if he didn’t.

He came home this week with letter sheets, letters he had to make without benefit of dotted lines. He likes to write in the air or on the carpet. He likes to write, if I don’t push him. I wonder if writing will someday be the bridge between him and eveyrone else. I hope so. I want him to be able to reach out to the world around him. I want him to reach out to me.

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