How To Make An Autism Parent Mad (#232)

For all of the time Charlie has been on the gluten-free casein-free diet (almost seven years) I have often been Ogre Mom when it comes to saying “no, he can’t have that” in response to queries about giving him “typical American childhood treats”: M & M’s, pizza, Ding Dong’s, hot fudge sundaes, fluffy hot slices of bread, Hershey’s chocolate kisses a cheeseburger, chocolate chip cookies with those Tollhouse chips in the yellow bag, buttered popcorn, milkshakes, those over-frosted cakes in the supermarket display case. Cheetos, Doritos, Oreos are off-limits; we get Charlie bags of “original” or “plain” chips and say “this is the best thing in that vending machine!”
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The one commercial junk food that we’ve been happy to indulge Charlie in has been McDonald’s French fries. (As I too well remember, that was the “comfort food” we ate on the 22nd of July, 1999, during a lunchbreak from Charlie’s evaluation at the Minneapolist Children’s Hospital Child Development Clinic—it felt like a deathrow inmate’s last meal. ) On our road trips up and down the Mississippi River from St. Paul to St. Louis and then back to New Jersey and at multiple Garden State Parkway reststops, those golden arches have been a reliable beacon.

But no more. This Monday, the McDonalds Corporation announce that the cooking oil those famous fries are fried in contains a flavoring agent that is derived from wheat and dairy products. “‘We knew there were always wheat and dairy derivatives in there, but they were not the protein component,'” McDonald’s director of global nutrition, Cathy Kapica is quoted as saying. “‘Technically there are no allergens in there. What this is an example of is science evolving.'” The company decided to note the presence of gluten and dairy in its French fries because of new FDA rules on packaged foods that requires that potential allergens be disclosed.

I have gone to great lengths to explain to Charlie teachers and my relatives that he HAD to have McDonald’s fries and not Burger King’s because the former were gluten and casein free.

I believe we have been had.

And that makes me mad.


Charlie will hardly be fries-deprived—my mom, when she stayed with us in November, reminded me that oven-baked fries are “fries” to Charlie and he’s been enjoying watching me slice potatoes and bake them in a hot oven, plus there are those fries from certain places at the Jersey shore that (as a cook once carefully explained to Jim) are cooked in separate batches of oil from the crabcakes and the onion rings and the clam strips. But yet again, we autism parents have been given every assurance from McDonalds–from the fries experts–from an “expert“–and the claims and “knowledge” have turned out to be very wrong and, in fact, the exact opposite of what had been said.

Sound familiar?

Like some well-recommended pediatrician shaking his head and saying “oh, it can’t be THAT.” Or, like some “autism expert”–a “very knowledgeable” psychologist–telling us “don’t worry, we’re taking care of it.” (After which assurance, a certain behavior that Charlie has struggled with got a lot worse.) Or, like yet another official proclaiming through tight lips that “X has years of experience in behavior modification with these kinds of kids.” (But the ABA that Charlie does as the major piece of his education is very, very different from the 1960’s “behavior mod” said “expert” proceeded to implement) Or, it’s some Important Person With Bureaucratic and Budgetary Power saying that the publicly provided program “will be fine.”

You never know what’s in that cooking oil.
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I do want to get Charlie the fries he likes so much, but why let him suffer through an unexplainable-by-him stomach ache? Do we parents sometimes not hear the hard truth–the bare reality–because some hopeful word or phrase like “preschool” or “mainstreaming maybe” or “just a bit of wheat won’t hurt” or “too HFA to need so many services” is said to us? We can never absolve ourselves of our responsibility to do the research and the thinking to evaluate and analyze what is right and best for our children. Our nights may be sleepless, but our hearts and souls will be left feeling like we did all, absolutely all, that we could.

Charlie, his teacher reported, was back to being his “smiley” self. The terrible SIB’s that led to such words as “helmet” entering our everyday vocabulary are slowly fading thanks to an onslaught of good ABA teaching at school and at home and throughout the day. Charlie is, at long last, learning to read and his speech–though we always wish to hear more of it—is clearer than ever. While far from the malleable toddler of years past (Charlie especially hates reminders regarding the bathroom), he easily followed my lead to go on a longer walk this afternoon. We ended up in a local school’s snowy playground and took turns breaking a path through a field where we had dawdled amid bugs and weeds in the summer. “Eat chicken,” was Charlie’s dinner request. He grinned excitedly when I brought over his computer and we did the second Edmark pre-reading lesson before he asked for “Sesame Street CD turn on!” and we both sang ourselves happy to the tune of “Rubber Ducky.”

It was a happy Valentine’s day evening with my little boy, the kind that never gets described in the autism textbooks by the autism experts.

It was a Charlie-treat. Sugar-free, low in carbs, rich in something essential besides vitamins and minerals, definitely low in transfats and in fat overall; definitely good for you.

Definitely good for me, still aggrieved at McDonalds–but Charlie can handle driving by the golden arches without getting “burger and fries.” Charlie–unlike a certain corporate food purveyor who fears to change the recipe behind its top-selling fried food–is ready and willing and able to change.

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Comments
8 Responses to “How To Make An Autism Parent Mad (#232)”
  1. Lisa says:

    “Charlie–unlike a certain corporate food purveyor who fears to change the recipe behind its top-selling fried food–is ready and willing and able to change.”

    Yes–change–that magic word. It seems that our kids may be more ready and willing to change than the establishment that seeks to categorize them.

    Hope you and yours are well.

    best,
    Lisa

  2. Eileen says:

    I thought of Charlie when I heard about McDonald’s fries on the news last night. Andrew loves them just as much as Charlie.

    I have ben making him some of the frozen GF ones that I buy. Ian’s…they are shaped like letters.

    I think I will have a harder time making the change then Andrew will. I love the convenience of driving though to grab a bag of fries for him. Oh well, we’ll all deal…just like we always do.

  3. ashley says:

    I am hopping mad (literally) about the fries. I hope everyone out there that’s read this fills out the McDonalds customer “feedback” form. I’ll give you some feedback right here people! Sincerely, Ashley, mother to Leo, 7, recovered, who said “Why did they DO that mom? to which I had no answer.

  4. Kristin says:

    What is really horrible, is that they new all along. Gabe is actually highly allergic to wheat and on rare occasions ate the fries. It’s about time that companies that produce and sell food take responsibility for what they are selling. This isn’t a first for McDonald’s and their lies. They were sued in the 90’s for frying their fries in animal fat, claiming it was vegetable oil. Shame on them. We will no longer be eating there.

    Take care,
    Kristin

  5. Preemiemum says:

    Thanks for that, I’m not sure that little gem of information has reached this side of the pond yet

  6. Wade Rankin says:

    Our reaction to the McD’s news was pretty similar to yours: outrage at being lied to all this time. I couldn’t help thinking of not only all the autistic kids on a GFCF diet, but also of all the celiac patients. At home, we use frozen organic fries that can be done in the oven, but now we have to search for a better fast-food alternative for when we’re in the car.

  7. Annette says:

    I am so sad! I’ve had Aiden on the GFCF diet for almost 3 weeks now and I thought, definitley glad to keep Mc D’s fries and fritos, this won’t be so bad! Yikes what will I do now? Actually more like, Yikes, I have to spend how many more hours in the kitchen?

  8. SquareGirl says:

    This is disheartening news! I cannot even count how many parents who have been counting on McDonald’s fries for years. The lesson in all this comes from our teacher’s like Charlie…he can adapt and change and yet, it is usually EVERYONE ELSE who should be adapting and changing.

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