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March is Developmental Disabilities Month. MSNN will be highlighting a different developmental disability each blog post this month in an effort to educate, inspire and connect our families. If you would like to guest blog, please email Kelly Hafer (KellyHafer@MSNNblog.com). Thank you.
There’s a saying out there in the autism community: “if you’ve met a person with autism, you’ve met one person with autism.” The same couldn’t be truer for pediatric feeding disorders. The symptoms and challenges are as diverse as the families who face feeding issues and the causes for this diagnosis range from the physical inability to eat (due to injury, underdeveloped muscles, swallowing challenges, gastrointestinal problems, etc.) to behavioral problems with feeding (due to sensory challenges, anxiety, and other behavioral issues).
Our story is just one of many. Our struggle is not unique but our path and treatment are one of a kind – just like our Little Miss.
Before we noticed anything else about Little Miss, we noticed the feeding issues. I can still close my eyes and clearly visualize the foster care report that was handed to us on the day she became a part of our family… it read:
“Foods: Eats Breads, Rice, All Kinds of Fruit”
The adoption clinic advised us to feed formula with a bottle to our brand-new, 10-month-old daughter in order to build attachment. We did as they instructed for about a month, and then, at the advice of our pediatrician, introduced a fruit puree. To say that those first bites of fruit were “rejected” would be the understatement of the year. The foster report was a lie.
Before we knew it, we found ourselves enrolled in the state early intervention program with an occupational therapist coming to the house to practice feeding (among other things) twice a month. I think that during those first months, filled with tearful battles over apple sauce, the only thing Little Miss learned was how to cry with her mouth closed (so I couldn’t stick a bite in when she wasn’t expecting).
Feeding disorders are a tricky business at best, and everyone seems to have some advice that worked for their sister’s best friend’s second cousin. But there is a big difference between the second cousin’s picky eater and the child who has become so malnourished that his development is impacted. Well-meaning friends will tell you “she’ll eat when she’s hungry enough,” and for the vast number of picky eaters, this advice is absolutely true. But what do you do when it’s not?
We visited all the specialists and had all the evaluations – there was nothing physically wrong with Little Miss’s oral motor function. She had the capability to open her mouth, accept a bite of food, move the food around with her tongue, and swallow. But for some reason, she wouldn’t even allow the spoon near her mouth. Her first birthday cake was ignored. Delicious homemade treats were refused. And we began feeding her “smoothies” (a mixture of formula and baby food puree) to try and keep her from losing weight.
By that time, we were enrolled in regular occupational therapy – every other week – with an OT who was specially trained in feeding techniques. We worked on desensitization (in the form of brushing, facial toweling, joint compressions, and messy play) and we cheered for each, infinitesimally small bite of food Little Miss sampled. Things finally seemed to be looking up.
We went on pretty happily until we discovered some rather significant food intolerances. Those 10-15 go-to foods we had worked so hard to build up on Little Miss’s list were suddenly cut to half. To make matters worse, Little Miss began self-restricting (reducing food items in the diet due to real or imagined threats). Another three items fell from our list. We needed serious, professional help.
We began treatment with an outpatient hospital feeding clinic in August of last year. The path has been rough and even now, seven months later, we have only added four reliably acceptable new foods to Little Miss’s diet. But we are making progress – and thanks to the experienced, multifaceted feeding team, we have begun to resolve some of the problems at the root of Little Miss’s feeding disorder.
Before I wrap this post up, if you’re reading this post because you know a family who is battling with a pediatric feeding disorder, I ask you to please offer your support. When one family member is unable to enjoy meal times, it creates a huge stress on the entire household. Parents may cook multiple “special” meals, scour stores and the internet for preferred ingredients, and spend countless hours with specialists. It is exhausting. Offer to keep an eye out for sales on preferred foods, cook something that the rest of the family may enjoy (and give mom or dad a night off from cooking two or more separate meals), or just offer your encouragement with a hug or a smile.
And if the feeding disorder belongs to a little one in your own family, I send my own encouragement, support and strength. Fighting my daughter’s feeding disorder has been one of the most challenging roads I have faced as a special needs parent, but with the right team and the right support, you can make a difference.
Mom2MissK blogs about her adventures with Little Miss at Beyond the Dryer Vent. When she’s not chasing Little Miss off on her next adventure, she also writes parent resource guides for Connecting for Kids, a non-profit support organization for families in the Cleveland area with concerns about their children’s development.
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