Monday, April 09, 2012

He wants to be normal.

We survived another holiday. It was rocky, and at times unpleasant, but we survived.

Chris can't eat artificial food coloring. Let me repeat that. Chris can't eat artificial food coloring. Well, to be truthful, he CAN eat it. It only requires opening his mouth, putting the food in, chewing, and swallowing. He CAN eat slugs or sheep poop too, and they'd be healthier for him. There are times when temptation overwhelms him and he DOES eat a piece of candy that's colored. We all pay for it when that happens.

Allergies cause histamine responses. That's how you define something as an allergy. Chris isn't allergic to food dye. It doesn't make him swell up. It doesn't affect his breathing. It doesn't cause hives. I wish he was allergic to dye, because that would be easier to deal with. Instead, Chris has a neurological response to food dye. He doesn't have a hard time breathing. He does wake up screaming. He does sit and rock. He does pick at his skin, his clothing, his nails, and his hair. He does get very anxious and worry incessantly about things outside his control. He does feel unreasonable fear. He does go days without sleeping. He does voice the opinion that he would rather be dead than feel like this. He does strike out physically when overwhelmed by the physical sensations caused by dye... but he's not allergic. He's also not faking or trying to get attention. Food dye makes him miserable, and it makes him miserable every time.

Chris is ten years old. He still gets excited about holidays and treats. Sweets are exciting to him. Surprises still hold the power to captivate and delight him... except... almost every surprise someone has put together for him is FULL of food dye. Chris is his father's son. He LOVES candy and goodies. He reminds me so much of Dave in that way.

He's ten. I know that he needs to learn to be graceful and not resentful when he can't participate when his brothers and cousins get candy. I know that he needs to be graceful and not resentful when he can't eat dessert. I know that he needs to be graceful and not resentful and not even mention that he CAN'T eat something- because good manners are about making other people feel comfortable, and reminding everyone that you can't eat what they are trying to give you makes them uncomfortable. He's ten. He wants to participate. He wants to get treats when the other kids get treats. He wants to be normal.

Wait. He wants to be normal. Did you hear that? He wants to be normal. He isn't making up a problem in order to get attention. He wants to be normal. He isn't being snobbish or rude when he can't eat treats that other people bring. He wants to be normal. He isn't being difficult. He wants to be normal. He is trying his hardest to be fun, and cooperative, and polite. More than anything in the world- he WANTS to be normal.

As much as I try to shield Chris from the more unpleasant sides of human behavior, the message he is hearing is that there is something wrong with who he is. As hard as he tries, he behaves differently than other kids. He tries SO hard to act like other kids. If you don't live in his house, you have no idea how hard he tries to not be autistic. He wants to be, and do, and think like other kids. He wants to eat candy with other kids. Making him MORE aware of how different he can be does NOT help. Food color is a simple thing to avoid... if you watch for it. But it's one more thing about Chris that is different. This is a battle that he can't win. He'll try to eat what everyone else is eating- in order to not be different. He pays for it later. I pay for it later. Our whole house pays for it later, because the dye causes real problems... if anyone is skeptical, they are welcome to spend the night after he's decided it's more important to be "normal" than it is to avoid dye.

I'm starting to hate holidays because the message society sends is that everyone is supposed to be happy. Every activity seems to be centered around food. The food in our house is safe for Chris to eat, but anywhere else we go (with the exception of our homeschool group) Chris winds up sitting out while every other kid gets excited about candy. Games, have candy as rewards. Easter eggs, are filled with candy. Desserts... usually filled with artificial color. Sure, the company is excellent! We have awesome family and friends who are fun to hang out with... but... Chris is ten. He's still maturing. It is NOT fun for him to watch the other kids having fun while he can't participate.... and he sees no point in participating when the reward is something that he can't have.

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Jake camping in the living room

Jake camping in the living room