Wednesday, February 27, 2008

Food Fight

Keeping JJ out of the the kitchen has been a fight at our house for over 5 years. He was 13 months old when he started getting into the fridge, bringing us the milk and his bottle. In the beginning we thought it was adorable. Little guy carrying the heavy milk gallon, finding a bottle, and putting it next to mom or dad to fill up. When he started opening the milk container himself, and attempted filling up the bottle alone, it wasn't as cute. We had to start keeping a close eye on JJ in the kitchen.

We had no idea, way back then before autism was even a thought in our minds, that it was just the beginning of one of the hardest obstacles we face with JJ.

For several years, JJ was taking a medication that made him hungry. We knew it was a side effect, and when we decided to use it, we didn't forse how quickly he would bulk up. He's always been big- born a month early and weighed in at 10.5 lbs. I'm tall, CJ is tall- it's in his genes. But it wasn't a concern at that point. The medication was working, doing what we had hoped it would, and it was worth the hunger to have him functioning better in so many areas. In fact, the change in him when he started the medication seemed like an answer to prayers. He was connecting with us.

As he was getting older and harder to carry and tend to, and he wasn't making much progress as far as developmental age, we ignored the fact that he was getting fatter and fatter. We knew it, the docs knew it, but the benefits of taking that medication were huge. Fours years, and he went from just being a "big boy" to being obese. No one has actually ever said that word to me in reference to JJ, maybe they don't want to hurt my feelings, but it's an obvious fact. He's almost 7, and weighs 110lbs. He's heavier than both his older siblings, heavier than many adults I know.

Daily living and hygiene for a child who is so low-functioning means that CJ and I are doing nearly everything for him. Changing diapers on a kid this big is no small task. Brushing teeth is a fight (although, miracle of miracles, CJ has made some progress on this recently and JJ isn't fighting while dad brushes his teeth), getting him dressed, and trying to move him from one location to another while he is asleep is impossible. If he falls asleep on the couch or the floor, that's where he stays. He's got so much bulk to use to his advantage- he can pull away from us if he's determined to run.

And the most difficult part of him being so big: he's become a bully. He is completely aware that he can hurt us when he's unhappy or not getting what he wants. He grinds his feet into the top of ours, hits, bulldozes, basically uses his bulk in any way he can. This is the hardest when it comes to his brother and sister. He may be mad for any reason, but he wants to take it out on MJ. She gets her hair pulled, gets hit, cornered, and pinched, and yet my darling girl still wants to hug and kiss JJ whenever she gets the chance. TJ is better at deflecting, and only receives a small amount of his brother's aggression. (Just another way that these kids are so amazing- they love JJ unconditionally, no matter how he treats them.)

It came to a point where we had to take him off the drug. The problem with coming off the medication is that JJ has been eating, and fighting to get into the cupboards and fridge, for so long that its become a habit. We have tried every kind of lock system over the years. He can always figure them out or pry them off. At one point we had chain wrapped around the fridge, but that was so difficult on the rest of us that we gave it up. Right now we have a bed frame propped up against the freezer, and he just pushes it aside to get in. We put the bed back every time, at least it slows him down.

We have been looking for an alternate medication, one that does not increase appetite, and have not been successful. We have tried no less than 15 possible alternatives. Nothing has the same effect on his behavior, aggression and attention (the reasons we tried medicatio in the first place) and most keep him from sleeping (a whole other problem- this kid does not need sleep.) We have tried meds that simply make him not hungry, but the aggression increases with these. We have been working on it for two years, and have yet to find anything suitable.

So the food fight continues. He spends a good chunk of his time eating, trying to eat, or fighting CJ and I to get into the food. CJ heard recently that there is (if this is fact) a company out there that can turn freezers into refrigerators. And since you can find large freezers that have built in locks, this would be an enormous blessing. The cost of one of these locking freezers is high. I imagine that the cost to convert it is equally high. But the change it would make in our household, and in JJ's health, would be priceless. I've been searching the internet, and can't find any info on this possibility, but you can bet I'm going to keep looking.

And in the meantime, I'll use my body as a barrier, continue to hide food where I can, and pray for a solution.

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