Feeding Therapy: a food desensitization program for my sensory-challenged kids

sensory

For years I was so overwhelmed with my children’s behavioural issues that their eating issues almost fell off the radar. The fact that they had an extremely limited variety of meals they would eat, that they freaked out if a new food was even suggested, and that they routinely dropped foods from their “approved” list was of concern but further down the list of my priorities than handling their outbursts and aggressive tendencies. Now, after a year of therapy for my son and a half-year for my daughter I feel like I have the behavioural stuff largely under control. Shit still happens, but I know how to handle it effectively. So I am now ready to tackle the food issue. The start of 2013 seemed an auspicious time to begin.

I will be writing a series of posts under the category “feeding therapy” that will document my successes (and likely some failures) with a program I’ll be using to try and increase the diversity of foods my children can eat. I’ll start today by outlining the issue we are facing, one that is very common to families with kids on the autism spectrum: that of extremely picky eaters. Reading others’ experiences has helped me a great deal to feel less alone. I hope my writings can provide similar support to others out there.

My kids seemed to start out “normally”. Both were exclusively breastfed for six months and then continued to breastfeed until age 3. As they moved to solid foods at around 6 months they ate a pretty wide variety. My daughter enjoyed canteloupe, chinese mushrooms, rice, curried lentils…all of which will now send her screaming and running in the opposite direction should it even be suggested she try them. In short, she enjoyed a good distribution of fruits, vegetables, and protein. However, from about age 3 onwards she started “dropping” foods. One day she wouldn’t finish the plate, a few tries later she’d not eat it at all, and then it would hit the “I don’t like that” list.  I learned much later that this is called “food jagging” and is common among kids with neurologically-related eating disorders.

I wasn’t really bothered by this at first, because my kids were growing well and were at good weights for their age and height. But shortly after her sixth birthday, my daughter began to gain weight. I didn’t even notice it until I realized that she was looking a bit chubby. Her weight continued to climb until it reached a zenith at around age 9. Then she began a growth spurt and some of the weight became more evenly distributed but she is still carrying extra pounds. Now, at age 10, she has quite a large tummy and is overweight for her height and her BMI is bordering on obese. The fact that she is tall hides some of that. The exact same pattern happened to my son who, at age 8, has not yet had a growth spurt to counter the extra pounds and is now quite overweight. Part of this is due to their high carbohydrate diet, and partly due to the fact that, like many kids on the spectrum, they hate sports and most physical activities.

whitefood

As their “picky eating” became more pronounced, and especially as they gained weight, I was increasingly the target of unsolicited advice about what I was doing wrong. You can imagine the reaction I would get when my 4 and 6 year olds were dictating what I could make them for dinner. And believe me, I tried it all. I tried insisting they at least “taste one food each meal, just one bite” but the tantrums and meltdowns that arose were so incredibly distressing for me and them that I soon stopped that tactic. I was accused of “letting them win” of giving in to their manipulative ways, but I sensed on a deep maternal level that my children were seriously distressed and anxious and all my insisting was not only making it worse, but making mealtimes at our household intolerable. If I simply refused to serve them foods other than what the rest of the family were eating, even if those were foods they previously ate, they would just not eat. Then I would deal with kids who were having meltdowns and sleep problems due to hunger and that was no fun. It seemed to me that the only one being punished by this tactic was myself. I was told “no kid will let themselves starve”, but the distress and anxiety it caused my children to have me outright refuse to feed them something they could eat was threatening my relationship with them. I continued to be accused of being too soft on them, and a victim of my own lack of will. Meanwhile I was exhausted and stressed out and nobody believed that there was a deeper problem. Looking back on this, knowing what I do now, it is hard not to feel bitter about the way I was treated. Nobody trusted my instincts that something deeper was going on than mere wilfulness and stubborn children.

food3

When I finally realized that my kids might be autistic I soon learned that eating disorders such as this are common among kids on the spectrum. Usually it’s an issue of sensory processing disorder. My son had obvious dislikes when it came to temperature and texture: he’s the only kid I know who hates hot chocolate (or any hot beverage or soup) and he tolerates ice cream only briefly (never finishes his serving). He does not eat hard, crunchy foods including candies. On the other hand, my daughter can smell a salad from across the room and it nauseates her. She was ridiculed by members of our extended family who accused her of being overdramatic. And yes, I was blamed for coddling her. But finally we had diagnoses and an Occupational Therapist who was supporting my claims that this was not a discipline issue nor a parenting mistake. My kids had genuine eating issues and while there were treatments for this, none following the “conventional wisdom” (a term I’ve come to conclude is an oxymoron) would work. Yes, children with sensory issues around food will actually eat themselves into malnutrition.

The main difference between my kids and others I’ve read about is that mine are overweight, and I’m certain this is because the foods to which they have limited themselves are very high in carbohydrates such as bread, white crackers, and cheese. I succumb more often than I’d like to admit, even to myself, to giving them junk food. Because, besides the health issue of eating such a poor variety of foods (I only just this past year found a vitamin supplement they will eat), there is also the issue of me having to make three separate meals at breakfast, lunch, and dinner. They eat different foods from one another. Thus, I spend huge amounts of time in the kitchen cooking and washing up, and it really eats into my time to do homeschool time and FlyLady tasks. It also makes it really difficult when we go anywhere as I always have to bring something for the kids to eat because their tastes are so very limited that nobody has what they will eat. When I had my daughter I swore I would never take her to McDonalds, but nowadays a trip to the drive-thru saves me literally hours in the kitchen, and is often too tempting to pass up.

It was our Occupational Therapist who drew my attention to the work of Dr. Kay Toomey, a pediatric specialist who runs a program for kids with eating disorders related to sensory issues. I have been unable to find sufficient detail to implement the program exactly as she does, but with the information I have I’ve been able to put together a plan that I think will work.

The idea is to desensitize children to new foods by introducing them very slowly. The program starts by getting the children used to sitting at the table with the new food somewhere on the table. Depending on the children’s tolerance for its smell or appearance that may be at the opposite end of the table from where they sit. Over time the food gets moved closer to the plate as the children desensitize to its presence. Eventually the food ends up on their plate, then touching their bodies somewhere (fingers, lips, chin), then the child has to take a bite and hold it in their mouth for a few seconds before spitting it out. This progresses to chewing and spitting out, chewing and swallowing, and eventually the child can eat the food and it gets added to their regular meal rotation. All along the child is eating their regular meals too, so they are not going hungry.

food2

I started by making a list of foods I would like them to eat. Since our family is on a low-carb, primal/paleo type diet I am focussing on proteins and vegetables. The foods start out simply and will gradually progress in complexity. For example, week 1 is chicken nuggets and carrots. The nuggets will be prepared with ground chicken (my kids like an even, smooth texture) and breaded with almond meal and fried in coconut oil. They will be very lightly seasoned with some salt, garlic powder and onion powder. Once they have accepted this recipe I can then modify it in many ways. I can add finely chopped or pureed vegetables to the chicken. I can change texture by gradually making the chicken less smoothly ground until I can use chunks of chicken instead. I can add new spices and flavourings. I can even add dips to introduce new flavours. Or I can start mixing in ground turkey, pork, and/or beef to introduce those flavours. The carrots will be presented both raw and steamed as I’m convinced my boy does not like hard, crunchy foods. I will do a happy dance of joy the day I see my kids eat a vegetable! From there I can try serving carrots in a variety of ways, using them in dips, and mixing them with other new foods.

The key to all of this is a reward system, because my kids are at an age now where I need their willing co-operation. They need rewards that are relatively immediate, as longer-term rewards get discarded in the heat of the moment. I’m using their most powerful motivator: dessert. We rarely have dessert in our family so it’s a big treat for them and both my kids have a killer sweet tooth. Week 1 starts with mini chocolate cupcakes (gluten free). The children will earn 2 mini cupcakes for following the plan. They can earn an extra cupcake in any meal where they step up to the next level ahead of schedule. So, for example, if my daughter is at the stage where she needs to chew a piece of chicken nugget and spit it out, she can earn an extra cupcake by swallowing it. She then proceeds on that step, back to 2 mini cupcakes, until the next stage is reached. This provides my kids with a motivator to jump ahead rather than hold at one level to avoid moving up a level. And prevents me from ending up having to serve them seven or eight cupcakes if the step rewards were cumulative.

I’ve spent the better part of this weekend working out all the details, because kids on the spectrum want details. They want to know exactly how this is going to work, and god forbid you decide to change things halfway because they aren’t working – that won’t fly! So I am struggling to anticipate any hurdles and figure out how I’m going to coordinate this with my regular meal planning and cooking. It is going to be a bit of extra work, so I am forgiving myself by taking a few shortcuts such as letting them have hot dogs as a meal. I figure if they will do something so amazingly unprecedented as eat a carrot I am willing to serve up as many hot dogs as it takes! Ditto on the cupcakes.

I start Monday. Stay tuned!

food1

Advertisements

3 thoughts on “Feeding Therapy: a food desensitization program for my sensory-challenged kids

  1. Good luck with it all! I have relatives who have these sorts of food issues, and it is a long haul! I hope that you get to see them eat veggies one day soon.

  2. Ooo….I’m looking forward to your program. Soren is a white food kind of guy too – sensory as well. I hope it works for you!

  3. I wish I had seen this when you started. How is it going? My son has similar issues and it is such a struggle finding a happy medium. He only eats fruits, yogurt, and only wants junk food. I’m not a fast food person, but of course the only warm foods he likes are french fries and maybe chicken nuggets from Mcdonalds. His pediasure must be warmed up along with his milk or he doesn’t want it. His fries must be at a certain temp with nuggets also. He runs or covers his nose at the sight of certain things or if he smells something brewing in the kitchen. I’ve made smoothies and tried to sneak other ingredients in and he is able to tell the difference. At first people said, he’ll grow out of it. He will be 6 this year and he hasn’t grown out of it.

    Hoping to see what success you have with your kids.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s