"Quod me netrit me destruit."
What nourishes me also destroys me.

Monday, January 19, 2009

Anxiety and Assessment Testing

One would think that I have bigger fish to fry (sorry for the food reference) than having to worry about my son getting into pre-school. However, this is a serious reality here in Dubai. Schools are few and far between while the student population exceeds placement availability. One other major challenge for us is that there are no special accommodations made for children with special needs and there are no laws in place to prevent discrimination against kids who do have health, behavioural, mental or learning disabilities.

Case in point . . . back before I found out that Zane was allergic to all food I tried to sign him up for a nursery school. When they saw that he had multiple food allergies they told me point blank that they would not be able to have him attend their school. I honestly didn't care. At that time I felt like I didn't want my son to be where they didn't want him.

But then the next nursery school I tried to place him didn't want him either and I struggled to find a place for him somewhere. That school suggested that I place him in a school called Al Noor, which is a school for children with severe mental disabilities - a problem that Zane thankfully does not have. I had to fight hand, tooth and nail to get him in to his current school. Now that he is in, his current teacher admits that she doesn't understand why they made such a big deal out of Zane's condition because he is completely normal otherwise except for the fact that he doesn't eat food.

The discrimination that occurs here is totally blatant and obvious. I took Zane to a school today for assessment testing and they told the parents that children with special needs would be immediately dismissed. Of course, my heart races and I am filled with anxiety. My daily life is consumed by the fact that Zane can't eat - not so much because he can't but because I can and have to. I don't want to unnecessarily expose him to food as fear of temptation sets in. But, when you throw in situations like this it just makes it worse and more complicated than it needs to be. Why does everything have to be defined with food??

And to think that I used to be the biggest "foodie??" I loved checking out the latest and greatest restaurants. I watched the food network religiously and my collection of cookbooks were my bibles. I would sometimes just sit there and turn the pages reading recipes and coming up with ideas of what to make next.



Back when I was in law school and my husband was getting his MBA, we had our Sundays together. We would go out to a cool grocery store, like the Chinese market, and collect some interesting ingredients. We made shopping an "experience" and not just an errand. We would go home and cook a meal together or sometimes would invite friends over to enjoy it with us.

Now, however, with a child with an eosinophilic disorder any experience I have with food has a negative connotation. Grocery shopping is now a chore and yet another manifestation of guilt that I feel every day because I can eat when my son can't.

I'm trying to come up with new and creative ways of defining and living life without food. I don't want Zane to feel like he's missing out on anything. But, it is difficult. There is a certain amount of social isolation that you experience by not eating because everyone else does center life around it. However, my son is entitled to a good education. To deprive him of that simply because he can't eat food seems to absurd to me.

1 comment:

  1. Hi,
    It's Helen, Ronda forwarded the site to some of her friends. I think it was part for education and part support.

    I'm not a mother yet, so my empathy stems squarely from my experience in helping raise children (cousins, sister, kids I babysat). The first thing that came to my mind when I started reading this was, she (meaning you) must feel so rejected. I know I would.

    I wanted to tell you, even though you most likely already know and I'm being overly sensitive, Zane is a very special little guy. I know that because of the glow on Ronda's face when she talks about him, it's a special glow reserved for special people.

    I'm sorry that you feel this guilt, but from conversations with my mother about my childhood, I think it's safe to say that good mother's feel guilt.

    I apologize if you find anything I said offensive, I just wanted you to know that our house is rooting for Zane, his health and your strength.

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