We get them all the time- the strange confused looks when we’re feeding Parker in public because he’s eating baby food and clearly isn’t a baby. Occasionally we get people asking questions, of course TO Parker and not to us because God forbid someone actually asks us “why are you still eating baby food?”
It’s a difficult thing to try to explain to someone who doesn’t know Parker or his situation. Without having to go into a half an hour diatribe about everything he’s been through, there’s just no way to tell people so that they’ll understand. I can’t just say “he has an eating disorder” or the strange looks would turn into even stranger ones.
Most of the time, even when I do take the time to explain it, people still don’t get it. How can I explain something adequately that I don’t really understand completely myself? I’m sure others think i’m exaggerating the problem, who knows why. I wish I was! I wish the problem was all in my head or that I was making it up.
Unless you have a small child with somewhat of an eating disorder, sensory issues and an aversion to table food, I think it’s nearly impossible to understand what it’s like to deal with it, why he does the things he does, why he refuses to eat certain things. And I don’t get mad about it- I can’t really expect people to get it. If you haven’t dealt with it first hand, it would seem absurd.
While I don’t expect anyone to ever really get it, it does tend to get frustrating for people to assume without really knowing, or to make comments that imply that i’m wrong about certain things. I don’t know if it’s that everyone just thinks EVERY kid is the same and therefore can be compared to every other kid and have it be fact- but i’ve learned from experience that you just can’t compare Parker to other kids because he simply isn’t like them. I wish he was, and the comments and advice actually applied and would work- but they don’t.
I only have one friend who has ever been through anything like what i’m going through. We always turn to each other and talk about it because we know that trying to talk to anyone else sometimes seems pointless. If you haven’t met our kids, seen them eat, or spoken to their occupational therapists- you’ll never know what it’s like. And as much as it would be nice to commiserate with someone else, I definitely wouldn’t wish Parker’s eating problems on ANYONE else. It’s incredibly frustrating to have to still feed a 16 month old baby food, and to have it take him weeks just to work up to touching pasta.
The things your mother used to tell you about kids may just not be true. If you let a kid sit hungry, a kid like Parker, no matter how hungry he gets he will NOT eat what I have in front of him. It doesn’t work that way with him. He will literally starve himself. Some kids might relent and eat, not Parker. Eating is not instinct. Not after 3 months old. Eating has to be learned after that. And considering Parker got sick at 3 months old and stayed sick, wasn’t ever hungry because of delayed gastric emptying and couldn’t breathe when he DID thanks to RSV, he never learned to eat on his own. He has to start from the beginning, and get over the conditioning that happened in his head to associate not being able to breathe with food.
That in a very condensed nutshell is part of his problem, and why he can’t be put in the same category or line of thinking as kids without his problem. He’s just not like them!
The comments I make about Parker may seem totally ridiculous to the outside person, but it’s fact. It’s just the way he is, and we’re working to change it- but it’s going to be a very long road.
Until that time I suppose I have to get used to fielding the somewhat negative comments and the confusion, and people always wanting to compare Parker to their kid because they don’t really understand that they can’t.
This is sounding like a now infamous blog that opened a serious can of worms so allow me to clarify quickly that this is NOT about one person, or even a group of people. It’s not directed at anyone, or a dig at anyone. We get comments from just about everyone, so it’s an everyone kind of thing.
Now, i’m not saying the advice isn’t appreciated. I’m willing to, and have tried just about everything at this point… so it’s quite to the contrary- keep it coming!
BUT- If you do know me, just do me a favor and refrain from giving me the stink eye when I tell you that it won’t work or that you might be wrong. It’s not that I want you to be wrong (god how I wish you were all right!), it’s just that you probably are when it comes to Parker and his problems. He is a complicated kid!
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