Jack wants to know why he is different. It came up again last night at a youth group devotional. At the devotional Jack wanted to eat foods that he just cannot have- too high in fats for his disorder. I gave him some small treats but he wanted more. On the way to the bathroom to wash-up he kept telling me, "But I want another cupcake, I need another cupcake."
I answered simply, "You can't."
"Why?"
"Because your body doesn't need it."
Jack's face brightened as it became clear that this was all just a tragic misunderstanding. "Oh, no- see Mom," he pointed into his mouth. "This is my voice, it's coming out of my body and it needs another cupcake, see my body is saying that."
Since that evening we've had multiple other times when I've had to be the "food police" at gatherings. It's not an enviable position. My son resents it and I'm sure I sound like a freak to anyone who overhears since he's a thin little guy . To compound matters, if my other children are also present they all eat like line-backers, without mommy-interference, which is also noticeable.
For Valentine's Day today, I gave little boxes of candy hearts to everyone instead of the chocolates that I know the big kids would have preferred because it was easier for me not to have my 3 year old wondering why he had been gypped; after all my big kids are too appreciative to complain. So I gypped my big kids because it was easier, that's not right.
So, this is a question-in-a-bottle instead of a message-in-a-bottle. I want to get my mind around a plan. I'm hoping to hear from moms who have tips or stories for dealing with a young child who has dietary restrictions especially in the context of siblings without the same restrictions.
I realize this is a long shot- Jack's disorder is rare enough that we've never personally met another family dealing with FODs. However, surely families with celiac or childhood diabetes, for instance, have to deal with teaching their little one that they cannot always eat what everyone else is eating.
How have you talked to/taught your little one about their body's special needs?
Can you recommend any books about this issue?
How do you deal with outings and with what siblings can eat?
How do you deal with family celebrations?
Thanks in advance, my fellow mom-blogospherians.
I wrote this post this weekend in under 30 minutes (got to love cut-and-paste) for Steady Mom's 30 minute challenge, in the hope that Steady Mom's wide readership would garner more mom's with the know-how I'm seeking.
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10 comments:
Susan, we don't have to face this issue, because Max is solely tube fed. Have you asked the FOD group? (I'm in the OAA side...but I know there are several families that have faced the same issue.)
Have you ever been to one of the OAA/FOD conferences? This year it is in Georgia in July.
Deana,
Thanks for taking the time to write back:) I am hoping to go to the conference in July. Have you been to one before?
You are right about the FOD group- it's been discussed there before but not in the context of a large family- or not since I joined at any rate. I was planning to ask the FOD group again.
We're having to go back to the NIH for the MMA study this summer. That will be our "big trip", so we'll have to pass on the conference in July. I've always heard they've been good though, so I'm sure you'll have a good time, and meet lots of other families!
I don't have to deal with issues like this, yet, since we only have one child (one on the way, though!), so I'm sorry to say I don't have any suggestions, but I will pray for you! I have thought about things like this, though. For instance, our discipline for Isaiah will probably look different, as he has certain "discipline spots" on his body that don't have feeling. We've had to be more creative than we otherwise would have. I've wondered about big and little things.
Anyway, all that to say, I look forward to learning from you as you learn, and as I continue to think about these things, I'll be in touch, though my thoughts won't have the experience behind them that is so valuable.
By the way, I love the creative logic that Jack had about the cupcake. He must be a lot of fun!
I really have no advise for you, but sometimes I do similiar things-simply because my 3 YO's emotions are so volatile. I have been known to ajust my rewards/punishments for her & for the others, knowing that it might cause a melt-down. I always feel guilty about that.
We have nothing on your scale! But some of my kids have odd allergies - one cannot have certain cheeses, one cannot have avocado, or soya... and the odd nut allergy. They are all potentially dangerous - not just a slight rash but a lie on the floor can't breathe reaction... So I have always said those kids cannot have cheese on their pizza or whatever and only one or two can have chocolate. Mine had to learn that we all have different treats, nobody is equal... now if I could just teach granny that chocolate for one doesn't have to mean chocolate for all or chocolate for none... it is the same with preferences... as soon as my kids got that they liked somethings that others didn't and so on they got allergies... I get annoyed when folk tell my kids not to eat a food because it is yucky - it isn't, it is just bad for THEM. I guess I always figured our kids are individuals and I hardly ever treat them all the same or even all at the same time!!! I have never bought se7en of the same candy ever!!! I think I should probably read a parenting book on equality!!! Thanks for making me think!!! Have a good week...
Cristy Lynn, I definitely appreciate your prayers and thoughts. I look at the stuff you are doing with Isaiah and think that you have a huge amount of knowledge about what you are doing.
Kim, I had a volatile one, blessedly she's grown up. I know what you mean. So much of mothering is not black and white. I just heard about a book called, "The Explosive Child" that I want to read- so I can see what I should have done;)
Se7en,
Severe allergies are a very similar deal- though probably a lot more immediately scarier than having to avoid fats.
"Mine had to learn that we all have different treats, nobody is equal..."- o.k. this makes such simple sense. I think I've been trying to make life "fair" for Jack. It will probably be easier in the long run if I don't try to over-protect him from the differences. Duh...
Funny you should mention Granny thinking that no one can eat chocolate. I've had to work so people understand that Jack can have sugar- that he needs carbs. People are so used to diabetes that when they hear Jack has a metabolic issue they default to handing him sugar free lollypops, arggh...
I have always felt having a FOD was like having a big giant food allergy. The only friend I have that has some understanding of what life is like with a FOD, has a son with multiple food allergies. The restrictions can be crushing sometimes. Most days are good, but then we attend a party & I worry about what my 2.5 year old with a metabolic disorder is going to eat. Keeping her safe is my number one concern, but sometimes I want to shake my fist at the sky & yell obsenities over how unfair life can be sometimes. It is crushing when you have to try to explain to a toddler why she can't have a giant piece of cake live everyone else at the party.
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