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Monday, July 12, 2010

Rules...

I hate rules. No, that’s not true. There are some rules that I love. Iambic pentameter, for instance—LOVE. The rule of odd numbers creating a visually pleasing visual. The Pythagorean theorem. But there are also rules that kinda grate. Chewing gum in class—who cares? Having to put on your turn signal when you’re ALREADY in the turn lane? Or the red left turn arrow in a non busy intersection, even? No eating after 8pm—riiiiight. Well, our household just adopted a new set of rules, and I’m already feeling the chafe.

As Special Needs goes, once you get the diagnosis of ASD, ADD, ADHD or any other acronym that includes a variety of sensory issues, you inevitably run up against the question “have you changed his diet?” His diet—as if this kid is eating anything but cheese, bread, peanut butter and chicken nuggets. (ok, his diet is better than that—but you get my point) It turns out there is some sort of gut-brain connection for some kids, and those kids MAY benefit from a diet that eliminates certain items, one of the most popular being the Gluten free/Casein free diet. And while the evidence that a special diet is at best anecdotal, you know in your own parental gut-brain connection that you have to try them, because you never know. I’ve read the lovely anecdotal stories of parents who cut out gluten, or red & yellow dye #594, and their kid became “normal”. Hell, Jenny McCarthy has made quite a pretty penny telling her own story about changing her kid’s diet and “curing” him. (If you can’t tell or don’t know me, those quotation marks imply sarcasm—a rich, deep sarcasm brewed and steeped over time) I’ve also personally talked to parents that have tried these different diets with bupkis to show. Anecdotal evidence is just that—anecdotal. Which kinda leaves it to every mom for herself.

I should note here, it isn’t the diets that bother me—it’s this constant need to “normalize” the kids/people that fall on the spectrum. I mean, yeah—I would love nothing more that to have my kid go to the playground, or a birthday party, and make friends, or make believe he is on a pirate ship, or find another method to deal with his frustrations rather than screaming. Yeah—who wouldn’t, right? Except there is a part of my gut-brain connection that says there is something special here—my kid thinks in a way that other kids do not, and I cherish that. I know—that sounds like rainbow brite hokum—but it is the truth. When people tell me “he’s gonna be OK” I can’t help but think, he’s OK, NOW. Different. Not Less. I cannot wait until Ben can explain to us what he sees when he looks at the world—what he thinks about when those wheels are turning.

And there it is—I can’t wait for him to EXPLAIN. Which means there are things he has to grasp, and learn, and control. Which is hard for him—and he needs help learning to focus and listen. For me, this is where things like therapy and diet comes in. I am not looking to cure my child, I am looking to help him grow. If there are dietary influences that are keeping him from paying attention or listening, then I cannot without a guilty conscience NOT try these diets. Not to mention he has a nasty case of eczema that I would love to control without slathering him with lotions…

So, in the next couple of weeks, our family is going to ease ourselves into the Feingold Diet. Step one, in my “things I can do to help” list. (well, step 453, really, but it’s more of a cluster diagram instead of a list…) I don’t know what, if any effects this will have, but if we can get him to pay attention for more than 30seconds or find another method to vent frustrations other than dog-howl inducing screams, then I will pour myself a cocktail and toast my ingenuity.

This diet was developed by Dr. Feingold to help kids with ADD/ADHD or SPD (sensory processing disorder—which has been labeled today’s new ADHD) And for any of you that think these acronyms are hokum, just stop reading my blog. As a former teacher, and the parent of a special needs child, I have seen and have lived with them all. Really—I’m not kidding. Find another blog.

As I began to do some reading on this diet, I found that it has some features I love. It’s at best an elimination diet that gets rid of chemicals and preservatives that may be affecting your “target” (that’s Feingold speak for the kid on whom you’re subjecting this). No artificial dyes, no artificial sweetners (yay!) no icky preservatives like BHT or BHA—and no I don’t know what those stand for other than “what I don’t want in my food.” I’ve been this kick for a while—a whole foods approach tempered with reality. So when I saw this part of the diet, I said, yay, I can DO this. Then I got the handbook. Then I poured myself a drink.

Along with all that crap, I also have to eliminate from Ben’s diet :

• Almonds
• Apples
• Apricots
• All berries
• Cherries
• Cloves
• Coffee
• Cucumbers & pickles
• Currants
• Grapes & raisins
• Nectarines
• Oranges
• Peaches
• Peppers
• Plums
• Tangerines
• Tea
• Tomatos
• Wintergreen
• Rosehips


OK. Now some of this stuff, not a worry. My kid’s never been a big currant or wintergreen fan. I don’t think he’d appreciate a delicate infusion of rosehips in his tea. But apples? Raisins? Tomatos & peppers, for chrissakes? Those are the two main staples of my cooking repertoire—the Mediterranean/Cajun/Mexican diet is the norm around here. What the hell am I gonna cook now? (ingest Drink #2)

Now, this by no way means he can never have these things again. This is an elimination diet—which means once we clear out his body of these natural Salicylates, we can then re-introduce them, slowly, one at a time to see if he has any sensitivities to them. I’ve read a few things on the Feingold member board about kids that are just fine with some stuff even a few dyes, but all hell breaks loose if they have a strawberry. So it’s hopefully only a few weeks of stage 1 and then we get to bring back the funk. But to get to the reintroduction, or stage 2, we have to see some improvement. So there are these food diaries I have to fill out, and symptom lists to which I must refer, and at the top of this control freak paper trail, a food list I have to follow.

THE LIST contains things that have been fully researched and approved by the Feingold association. There are a lot of things that are basics—eggs, milk, flour, vodka, etc—that I can use without checking THE LIST. But if I want to use a brand name product —say a macaroni & cheese mix in a familiar azure-colored box of heaven—I have to consult THE LIST.

And if it isn’t on THE LIST? No dice.

If it looks like something on THE LIST? No dice.

If it’s on the shelf next to where THE LIST product should be, in a bright box with a sans serif font and a perky empathetic cartoon gnome, promising to add years to my life or improve my immunity, all the while containing the magic blend of high fructose corn syrup and lard? NO DICE.

This means two things—either I make everything from scratch, or I spend a lot more time at the grocery (Well, groceries, now that I have to go to different stores) checking products against THE LIST. And THE LIST is neither brief nor easy to follow. Things may not be listed where you THINK they should be listed. And there are monthly updates of new products for THE LIST—printed on a different sized paper, so you can’t just cut and paste it into THE LIST. Nor is there a computer generated LIST that you could use—cutting and pasting to create THE LIST for your home. So that means bringing THE LIST and the supplement LIST, along with my shopping list, to the store. I can't even count the number of times i've walked out the door without my shopping list--now i have to remember three. Seriously—of all the things that need an app. You can get multiple apps for playing farts or GPS tracking the whereabouts of Nicole Richie, you’d THINK someone could work out this little problem…

LIST conundrum aside, you’re probably saying, so what? Cooking from scratch is the kinda thing you do—and you’d be right. I like to make my own cornbread, sure. Hell this weekend I made my own hamburger buns—SOOOOOOO good! I can even mix a Caucasian good enough to please the Dude with my eyes closed. But, honestly, some stuff, I don’t wanna make from scratch—like marshmallows. Oh, there are some on THE LIST, but I can’t find the three brands listed. Which means if my kid wants hot cocoa with marshmallows I get to sing a song my mother often sang to me: “tough titty said the kitty, but the cat came back.” I’m unsure of the reference, but in my house, it meant you can’t have it, quit complaining.

And back to the ban on tomatos. Can we face a certain toddler truth here? Ketchup is god. It is often the lure to get my kid to eat something new. He’ll look at me and say “dip?” Now there’s a recipe in the handbook for some sort of “Un-ketchup” with beets and carrots that you are challenged to “go ahead and try." Really? If a cookbook has to convince me to try something, I'm a little skeptical. Anyone wanna come over and try this beet carrot mélange? *urp*

(Yes, I’ll try it—I’m not that hard headed.)

In the end, we’ll be on this for at least a month before we have to make any tweaks—eliminate more if need be. And if that doesn’t work, then we turn to the Gluten Free Casein free diet. I had no desire to try that one first, because, well, it had a lot of rules, and I worried about all the snacks and treats he loved that would not be available. So instead now he cannot have his favorite fruit leathers from trader joe’s or applesauce, or grape jelly, or ketchup. And somehow, I thought this one would be easier. If you need me, I’ll be chopping beets…

p.s. for anyone interested in the Feingold program, here’s the link:
http://www.feingold.org/overview.php

2 comments:

hunterslyonesse said...

You weren't kidding when you said it was more restrictive than my gluten-free whole foods diet. I will say this, having to consult a LIST of my own, that once you start getting comfortable, you'll remember the usual suspects and only need it to refer to for the new things. And trust me, my LIST isn't the end all be all either. It doesn't get updated, so I have to check other independent lists - which I had no clue about until I was told that despite vodka being on the SAFE LIST, it wasn't necessarily true. Again, good luck, especially with that faux ketchup. I don't think I'd touch it with a 10 foot pole.

Julann said...

OMG- I think I will need this list for Luke to end his freak outs, but I hope Gary doesn't read this until we start ;p Good luck Dawn- and let me know how that "Ketchup" works out.

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