Before I had children, I was of the mentality that a child eats what's put on the table or they go without. Eventually they will get hungry enough and give in. Then my son Owen was born. After a week he refused to breastfeed. I pumped for six weeks and then switched to formula. With every bottle we would fight him it seemed. At times he had projectile vomiting.
As he grew in age, and transitioned to solids, the challenge of getting him to eat became harder. The first two foods I introduced to him, carrots and peaches, seemed to make him miserable and sick. I called the doctor's office, frantic, questioning my abilities as a mother. Why couldn't I get my son to eat?
Finally at 8 months, we introduced him to Yo Baby Yogurt, per our pediatrician's recommendation. He hadn't been gaining weight. Thankfully he loved it. There were VERY few foods we could get him to eat. For the longest time it seemed that Owen lived off of this yogurt. On occasion he would eat something else, but it was rare. As he became mobile, we resorted to sticking snacks in his toy dump trucks, hoping he would see them and eat them. It worked at times.
By the age of two, Owen would eat whole wheat pasta with sauce, grilled cheese sandwiches, homemade breads, crackers, pizza, and a few other items. Fruits and vegetables were rare, in fact I believe Owen has only eaten vegetables less than a handful of times throughout his entire existence. Still, it seemed Owen would eat one day, and then eat nothing for three days. This pattern seemed endless.
It was at age two that we learned Owen had allergies/intolerances to dairy, wheat, pork, and beef. I was devastated, his entire diet consisted of foods that made him sick. Slowly, I found alternatives that he would eat, and he became free of the allergens. He became a different child, although his eating habits continued to challenge us as parents. We found more allergies/intolerances.
Between the ages of two and three, Owen became extremely particular about his food. Everything he ate was a shade of brown, ranging from cream colored to dark chocolate. Most foods were crunchy. They had to be a specific name brand, or he wouldn't touch them. Thankfully by the age of three, Owen grew out of his wheat allergy/intolerance and that provided us with many more options. Still his eating habits worsened.
When Owen turned four, we said enough was enough. We had learned long ago that we couldn't say eat what's in front of you or go without, because Owen needed to gain weight. Instead we decided that for one week we would have Owen take one bite of one item on his plate, that we were eating, and then he could have whatever he wanted.
Our experiment went horribly wrong. Owen screamed for 90 minutes. He then decided he would take a bite. As the tiniest piece of food touched his tongue he would gag to the point of vomiting. This same scenario continued for a week straight. We gave up and realized something was very wrong.
After making a list of concerns regarding Owen, we took them to our pediatrician. We made a special appointment with him, without children present. It was then that he referred Owen to a Developmental Pediatrician, explaining that we could be looking at something as minor as Obsessive Compulsive Disorder or as serious as Autism.
On February 16th of this year, Owen was diagnosed with an Autism Spectrum Disorder. An Autism Spectrum Disorder comes with a completely different kind of special dietary needs. I remember one night going to the grocery store at 11:30 PM because I realized we were out of foods Owen would eat. My cart was filled with Wegman's Berry Corn Crunch, Tyson's Fun Nuggets, Jif Peanut Butter, Smuckers Seedless Strawberry Jam, Ritz Crackers, and Freihofer's White Bread. I felt embarrassed shopping so late at night for such items. I explained to the cashier apologetically that my son had an Autism Spectrum Disorder and these were the only foods he would eat.
His response was a surprise. He nodded with a huge grin, and said knowingly,
"I understand COMPLETELY. My sister has an Autism Spectrum Disorder."
We continued our conversation. It turns out his sister will only eat foods that are green in color. He shared specific name brands, etc...
It turned a very stressful situation into a comforting conversation.
A couple months ago I was told about the movie, Adam. It's about a young single adult with an Autism Spectrum Disorder. I remember watching the scene where it showed his freezer and cupboards filled with the same three items that he ate day after day. Part of me laughed and cried all at once. There were a couple other scenes that directly related to food that caused the same reaction.
There are many aspects of Autism Spectrum Disorders that are very difficult at times, but personally, I feel the diet is the hardest. Owen will starve himself for three days before he'd ever consider trying something new, and then he still wouldn't try it.
The sight of food causes him stress. I honestly believe if he could avoid food all together he would.
And then comes the controversy of the gluten free, casein free diet. There are other versions of it too. Some doctors recommend it. Some parents swear by it. Others believe they have proof that it makes no difference. Many who don't understand the prescription of it and it's possible benefits think parents of Autism Spectrum Disorder kids are crazy.
Meanwhile parents work endlessly trying to get their Autism Spectrum child to eat.
Questions:
How did you "discover" the special dietary needs of your child? How did you handle the process of finding things that were, (1) safe and (2) appealing to your child? What has been the hardest part about this process for you? What has been the biggest surprise?
If you have a child with an Autism Spectrum Disorder, please share your story, especially as it relates to food issues. What has your experience been with adjusting your child's food intake to modify his or her health/moods/behaviors? What has worked for you? What is still challenging?
I think its really great for parents to share their ideas, experiences and tips. I'm Kimberly and I am a mother to a 7 yr. old with ASD. He was diagnosed at 27 months.
ReplyDeleteHow did you "discover" the special dietary needs of your child?
He has always had dairy allergies and would never latch to nurse. Which we now know was a sensory thing for him. As he grew older, he only had about five foods he would eat. We just thought this was a 'toddler' phase. Then he got diagnosed with Autism Spectrum Disorder.
How did you handle the process of finding things that were, (1) safe and (2) appealing to your child? What has been the hardest part about this process for you? What has been the biggest surprise?
After he was diagnosed we heard several stories about diet changes. We were fearful for him because he rarely at as it was and he was very overweight for his age surprisingly and constantly battled with constipation issues. When he was 3 1/2 we decided to strictly try the Gluten/ Casein Free diet for 6 months. The Casein (Dairy protein) was the easy part, he never ate any but his diet mainly consisted of wheat or things coated in wheat. The first two weeks were the hardest but after that it was like a whole new little boy emerged. He was happier and more playful. He went from 12 words to over 200 words.
The hardest part for us was reading labels properly and being fearful of a diet infraction. We can always tell when he has something with wheat or dairy in it. His eyes glazes over, get dialated, he gets a rash all over his faces and sometimes gets incoherent.
After the couple of years he has been on this new diet change, we have managed to find substitute for everything. He still has foods he won't eat or try because of his Sensory disorder but we will always be working on that. We now know that he can't tolerate alot of sugar or Soy( the culprit of his constipation problems) and sugar because he gets yeast build up in his small intestine that cause him to be in pain and have severe behaviors. After changing his diet, he lost weight but gained muscle and has a healthier BMI because of it.
Hopefully I remembered everything :) If you have any questions feel free to ask!
My son has always had food issues. Like you said, its always the same foods, and impossible to get him to try new foods. As an infant he had chronic ear infections, so we removed dairy. Then most recently he was diagnosed with juvenile rheumatoid arthritis. We found out that he was reacting to wheat, dairy, eggs, food colorings, nuts, oats, and sugar. Even though my son does not have autism, arthritis and many other diseases are very similar to autism in that they are autoimmune in nature.
ReplyDeleteWe recently started the GAPS diet and it has been great! It is more than just avoiding the foods he is allergic to. It is using foods to begin to heal the damage that has been done. Here are a couple of posts that explain it better if you are interested. There is book written about it, but now there is a new online class out that I am hoping to take.
Monica
http://www.thehealthyhomeeconomist.com/2010/07/heal-your-autoimmune-disease-now/
http://www.cheeseslave.com/2011/03/14/new-online-cooking-class-reversing-food-allergies/
We discovered that Ryan had special dietary needs nine months after he was diagnosed when I saw Jenny McCarthy talk about a gluten and casein free diet on the Oprah show. I reluctantly(I was angry) tried the diet for him but it took me about a month to research and prepare. It took only two weeks to see major changes. He started speaking in sentences, behaving more like a typical kid, he was instantly potty trained and he was much happier.
ReplyDeleteWe are definitely parents who swear by the diet. I was really sad that I didn't know sooner and that might Dr. didn't know this. I had no idea that his colic, vomiting, eczema, diarrhea, and constipation had anything to do with autism or food for that matter. He was on this very strict diet for over two years and then we slowly transition to taking enzymes so he could occasionally have gluten and casein.
I was angry before we started the diet because I didn't know how to eliminate gluten and casein from his diet because gluten and casein were the only things that he was eating. I had to do a lot of research. If I didn't have YouTube I don't know how I would have done it. I had to buy expensive food and even make things from scratch. I got Ryan on a multivitamin designed for autistic children on the diet. When we started the diet I had the mentality that even if Ryan would only eat gluten and casein free cookies for every meal it would have to be okay because the goal was to eliminate gluten and casein from his diet. The good news is he didn't eat only cookies. I tried to make things like homemade chicken nuggets, meatballs, and muffins with hidden first and vegetables inside. The really amazing part is that the longer he was on the diet the more his appetite increased and he was willing to eat all different foods. In my research I have come to believe that many kids on autistic spectrum who will only eat certain foods especially if they are loaded with gluten and casein are actually addicted to the high that the undigested peptides of those foods give to them. If they can get over the withdrawal they can often come out of the fog that they have been living in.
Monica, thank you so much for your comments, along with Kimberely and Beverly too. It is always nice to learn about one other special dietary need out there I wasn't aware of!
ReplyDeleteThank you everyone for sharing!