Food for Thought

June 1, 2008 at 9:25 pm 5 comments

     C’s relationship with food is one I can describe with one word: weird. He’s not weird, but he thinks food is weird. Eating has been (and continues to be), without doubt, the biggest struggle he’s had. And it’s been the most challenging one for me as a parent. I remember details surrounding events relating to his relationship with food in vivid clarity, just like he remembers exactly what he ate to get which GeoTrax train part.

     First was the “cheerio incident,” and another was the comment his first feeding therapist stated about kids like C dying in other parts of the world, both described here. But the most confusing, the most powerful, the most educational, and the most life-changing remains a simple phone call. C’s feeding therapist had insisted we get food allergy testing. We had the blood drawn and I felt quite smug that nothing would show up; C ate graham crackers, yogurt and drank cow’s milk with abandon, and in fact those were often the only things he would eat.

     Then came the phone call from the nurse in our small-town doctor’s office. “He’s allergic to wheat, milk, and eggs,” she said a little too cheerfully. I watched him, slurping milk out of his sippy cup, and literally sank to the floor in tears. “What’s he going to EAT?” I cried, sobbing, wondering if finally, my child really would starve himself to death. Still not understanding the severity of C’s feeding issues, the nurse said, “Well, you’ll just have to take him off those foods and substitute other ones. No big deal.”

     She actually said, “No big deal.”  Really. Honestly, other than the trauma surrounding his birth, I couldn’t imagine much more of a big deal for this particular child. This was (and is) a child who could tell if we switch brands of baby food jars. Currently, he can tell the difference between different colored kernels of corn. This was nothing short of a nightmare, and I had no idea what to do next.

     In my usual fashion, I dove into research and discovered that people were already recommending gluten (wheat, barley, oats, rye) free, casein (milk protein) free diets for speech delayed children. Even though autism wasn’t even on our radar screen at the time, it is a common first intervention for children with that diagnosis, and one that brings great success for some. So off we went, I took out milk first by adding a mere teaspoon of rice milk to his milk and worked up from there. Two weeks later his eczema was cleared up and some unmentionable bodily functions had improved.

     Yet how and what C eats has changed everything about what a “normal” family does. Thanksgiving is irrelevant to him. Restaurants are places that hold absolutely no interest. My mother wishes she could take him to the ice cream shop for a treat. And in an attempt to look on the bright side of things, I have been slightly thankful that C is not interested in ice cream whatsoever, because it makes him not being able to have it far easier. He doesn’t want cake, candy, or other such things. He’s probably the only child in the world who has never tasted chocolate, pizza, or spaghetti sauce. He only enjoys Halloween because he gets to knock on people’s doors and chat with them; he gives all his candy to Mom and Dad (after, of course, sorting it by brand and color).      

     Years later, C is still GF/CF. Now I am too, due to my own recently discovered celiac disease and an allergy to milk protein. It’s been harder on me because I enjoy food so much more than C. Yet even though C’s feeding struggles are still enormous – to the point where I have come to accept the fact that he will likely always struggle with food – his health (and my own) is so vastly improved over those early days it’s hard to imagine ever going back to that kind of eating again.

    

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5 Comments Add your own

  • 1. epbush  |  June 2, 2008 at 4:05 pm

    Being a woman who looks for the cake before looking at the bride at every wedding, I find it hard to understand not wanting food. I suppose it’s like trying to talk about infertility with your parents. They don’t really understand because they are PARENTS.
    I LOVE to eat, and my waistline proves it. I love to eat with people who love to eat. I have known a number of picky eaters, and I don’t enjoy sharing meals with them. How do you deal with the social aspects of eating with C?

    I know what you mean – I LOVE food, and in my family, everything revolves around food! And I’m trying to retrain my mother because not only are C and I on special diets, but my sis-in-law is vegetarian and dairy free as well, and she and my brother have gone completely natural and organic (no more velveeta at our family functions – LOL!). So we’re trying to remind ourselves that it’s about family, not food!

    You know, C just isn’t interested, so it’s not an issue. He didn’t want the birthday cake at his own party – it’s hard to explain, but it’s just a non-issue because it’s not even on his radar. He used to not be able to watch other people eat without retching, so restaurants and family tables for meals weren’t happening. But just this past Christmas he did sit down and eat (albeit a completely different meal) with the extended family, so it’s progress. I’m not sure he’ll EVER be able to go to a restaurant and order a meal, quite frankly. It’s definitely an adjustment, and I take his food everywhere we go. I’ve gotten so used to it it’s become our normal now!

    Reply
  • 2. lastcrazyhorn  |  June 2, 2008 at 7:44 pm

    I didn’t find out until I was a sophomore in college that I was lactose intolerant.

    I didn’t find out until the summer before 8th grade that I had IBS.

    I’ve lost 20 pounds in the past year. It’s a combination of not having much money for food and not having much of an appetite anyways. If what I have in the room isn’t something I want to eat, I just don’t eat. And then I put it off for a few hours and consider the prospect again.

    I’m a bit like that too – about not eating if there’s nothing I want to eat. Hey – you’re ahead of the game – I’m almost 40 and just found out about my wheat/milk issues! And I assume your GI doc has checked you for celiac, which is a major cause of IBS in many people. Eat up, girl – from your pics you didn’t have 20 pounds to spare! LOL!

    Reply
  • 3. lastcrazyhorn  |  June 2, 2008 at 10:20 pm

    People always think that I weigh less than I do. Actually, last summer I was at 162. I haven’t been in the 140s since my sophomore year in college. *whistles*

    Actually, bread is one of my safe foods. Then again, I NEVER liked milk. I drank apple juice by the gallon as a child. Can’t stand the stuff now. lol

    Reply
  • 4. robinaltman  |  June 3, 2008 at 5:42 pm

    May I have all the birthday cake that you guys haven’t eaten?

    I guess, unless you’d like to try the gluten free, casein free, egg free, soy free, vanilla free, preservative free, dye free, artificial flavor free cake we COULD have??? LOL! Dang if I don’t miss cake – I never really had a thing for it until getting pregnant, and it was one of those cravings that has never gone away.

    Reply
  • 5. allergymom  |  June 6, 2008 at 9:06 am

    I applaud you! I have a daughter with multiple food allergies and swapping out all of her foods is difficult…but not impossible. My nephew is autistic and when I tried to convince my sister in law to try him on a gluten free dairy free diet (something I do now without batting an eye) she explained to me that because of his autism there are literally only 4 foods that he will eat, and 3 of them contain gluten. I didn’t know what to tell her. My daughter isn’t always happy about never being able to eat exactly what everyone else is eating, but at least she WILL eat it. You are an inspiration. 🙂

    Well, shucks, thank you! You made my day! 🙂

    One thing I took out of the post, however, was that when we did take out wheat/milk, he actually had a brief period of willing food experimentation. He probably went from eating about 8 foods to about 15 in the span of a month or two. We’ve never seen anything like that before or after, but for all my worry about him not eating anything ever again, he surprised us all. His feeding therapists have always said that he’s the worst they’ve ever seen in terms of restricting himself and being terrified of new foods. Look at this post too – can’t get the link to work, but it might give you some idea about how severe C is. https://asdmommy.wordpress.com/2008/02/29/something-to-think-about/ It was a very scary risk for us to go GF/CF with him – they’d been talking about a feeding tube for years and I thought for sure this would bring it on, but he amazed everyone on his team. I hope your SIL reconsiders! And thanks for visiting!

    Reply

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