October 3, 2018

Wednesday, October 3rd, 2018

Background:

My 3 1/2 year old son, Barclay, has a triple diagnosis of Childhood Apraxia of Speech (CAS), Attention Deficit Hyperactivity Disorder (ADHD) & Autism Spectrum Disorder (ASD).  Around 18 months of age he began to regress in many areas including speech, fine motor skills and in his diet.  He began to eliminate foods he had previously enjoyed like strawberries. He began to show signs of sensory aversions to certain food textures such as crunchy vegetables and to food temperatures such as cold ice cream or warm soup.  He also stopped requesting food as if he was losing the sensation of even feeling hungry.  This trend happened very slowly and there were so many other things going on with his development that we didn’t notice it at first.  When we did finally notice, we didn’t know what to do. The communication barrier made it even more difficult.  We asked our pediatrician and the collective decision was made to supplement with Pediasure and multivitamins for a short period of time hoping that this would pass.  It didn’t.

So now here we are nearly a year after we initially noticed this regression in his diet.  If you read my blog Eating with Autism: The Happy Dance you’ll get a better picture of what mealtime currently looks like around our house.  This blog basically describes how we get him to eat, not what we get him to it.  It also explains that nearly 80% of children on the Autism spectrum have issues related to eating for a variety of reasons such as sensory issues, medication interactions, and a hyposensitivity to hunger. That catches us up to now.

Barclay currently attends a 30 hour a week intensive Applied Behavior Analysis program.  What his team of therapists have been able to help him with in areas such as communication and social skills is miraculous. So I went to them for help.  The owner of the facility told me to keep a food log for a couple of weeks.  I created a chart and kept detailed data on what he ate each day, the time of day he ate, the volume of food and any other notes pertinent to that meal or snack.  During this time period I did not try to change his diet I just kept data. I also wrote a list of Barclay’s highly preferred foods, his moderately preferred foods, food aversions and foods he used to eat that he’s now eliminated.  Tomorrow I meet with his team and we develop a plan.

Barclay’s former behavior therapist through early intervention sent me this video recently Autism 204: Helping Children With Autism Who Struggle With Restrictive Eating. I highly recommend anyone who has noticed a restrictive eating pattern develop in their child to watch it.  It is a summit done by Seattle Children’s. During the presentation they share how their team takes an interdisciplinary approach to children with feeding challenges.  The team includes a nurse practitioner, a dietician, an occupational therapist and child psychologist.  They break down feeding issues into several areas: medical, nutritional, oral motor/sensory and child and behavioral psychology.  After watching this I realized I needed to make an appointment with Barclay’s pediatrician to see if his restricted diet has caused any nutritional deficiencies.  That appointment is in a few weeks.

I am going to chronicle our journey with overcoming restrictive eating.  I am optimistic, that with the help of our terrific team of therapists, we can help Barclay succeed and soon he can learn to enjoy a variety of foods. It is also my hope that this will help other families overcome similar feeding challenges with their children.

Thank your for joining us on this journey!

Amy