PCDA Part Three

In August 2007, I lost all hope that Kyle would ever eat again. He was making progress by eating yogurt, applesauce, whipped cream, and syrup but he wasn’t eating yet. At this point in our lives, we had been struggling with his sensory issues for two years with little progress made (in my opinion). I was trying to be patient but deep down, I just want to take food and shove it into his mouth. I am not a fighter at heart and I was stressed from fighting with Regional Center for more sessions. I was about to start working two different jobs and I didn’t want the extra stress on my schedule. I was tired of having a child with feeding “issues.” Frankly, I was done with the whole autism issue.

The dread I had every time I left the house was always with me. I don’t know if you can imagine the high state of panic I had when we were out and about. If I didn’t pack enough shakes, Kyle would go hungry. If there was traffic, I couldn’t just pull over to McDonald’s and pick up dinner because he wouldn’t eat. I never left the house without a full day’s food. We often drove to our church an hour away from where we lived. Many times, we were down to the last morsel of food when we returned home. Imagine being a mother and never being sure you had enough food to feed your child.

I realized that day in August, I had even stopped praying about Kyle’s feeding situation. Understand at that time in my life, I prayed about everything. I decided right there on the couch to start praying about this specific situation. I would go to the altar and simply pray, “God, I want Kyle to eat. Thank you.” That’s it. I didn’t use any fancy words but I just repeated over and over again what I wanted.

I think Kyle’s occupational therapist and nutritionist thought I had lost my mind when I told them I wanted to break up with them by Christmas. I did not want to see them after winter on a professional basis. I later told them about my prayer approach after Kyle started eating.

After a renewed commitment to his feeding therapy, Kyle started making amazing progress. Then on October 16, 2007 it happened. He took a bite of a cookie and chewed!!! I was so excited. He had swallowed things before but not really chewed. In the beginning of his therapy, Julie had to teach him how to chew using licorice, refrigerator tubes and sensory chew toys. I even remember sticking my finger into his mouth and told him to bite me so he could feel what a bite should be like.

Julie’s report in February 2008 was glowing compared to the report in May 2007. By February he had met or was progressing towards his goals.

May 2007

February 2008

Kyle demonstrated the most difficulty participating in sensory play, such as getting his hands/fingers wet or messy, touching crumbs, or holding solids. Kyle will hold a cracker, pretzel or waffle without distress and will reach for them without verbal and visual cues to participate. Kyle has taken a liking to fruit snacks. He has eaten up to 3 tablespoons of yogurt in one feeding session. This is a vast improvement over his last progress update where he was taking a few licks of yogurt from a spoon.

Kyle has demonstrated significant progress in all goal areas. In October, Kyle took his first independent bite of solid food. Since that time, he has added new foods to his diet, seemingly on a daily basis (emphasis added). Constant cooperation between the family, the feed team, and the CHIME preschool where Kyle now attends for a full day have been imperative to support him during this time of growth and rapid progress. Although Kyle was beginning to take small bites of cookies and crackers during the fall months, he continued to rely heavily on supplemental beverages, milk, juice, and single texture purees (applesauce, yogurt) for the majority of his caloric needs. Throughout November Kyle’s mother introduced new foods daily, such as oatmeal, mashed potatoes, pancakes, scrambled eggs, etc…By January, Kyle was eating 60 to 80% of the items from family meals with his sister.

During this time I was writing down everything, Kyle ate and emailing it to family members. They never indicated my weekly emails bothered them. I just could not just keep my excitement to myself.

Here is a snippet from emails I sent explaining why I was writing the weekly reports.

I started these reports to document what Kyle was doing in his different environments. I send these to his teachers, therapists, family and close family friends. If you do not want to receive the weekly updates anymore, just let me know. I know that people want to know how he is doing but don't like asking all the time. My memory is bad sometimes so I forget to share his progress with people.

Before I report on Kyle's fantastic progress this week, I thought I would take a moment and give you a brief history about his feeding. I realized I have not told everyone why we celebrate every little bite he takes.

July 31, 2005- Kyle stopped eating solid food. This was not sudden. He had slowly been cutting out foods for the past 6 months. Previously he ate Gerber Stages 1 and 2, pudding, spaghetti, rice, tofu, crackers, vanilla wafers, cereal and pizza. He would eat three snacks a day and three meals. He also stopped speaking. We thought his behavior had to do with Tara (she was born October 2004). He ate nothing between July 2005 and December 2005.

December 2005- He took six bits of pudding with his former Occupational Therapist. At various times during CHIME, he licked pudding from lips. He once put a Cheerio and a French fry in his mouth. When he bit the food, he used his tongue to spit the item out. He started licking mints.

May 2006- We started feeding therapy at Pasadena Child Development Associates twice a week. We saw progress immediately. He slurped strawberry syrup, licked dressing, chewed licorice, licked lollipops and became interested in feeding parents. In August 2006 the feeding therapy was stopped for a month. He made no progress in that month. We have been back at PCDA since then. His progress has been wonderful for us to watch. We want to share that progress with our family, close friends, and incredible teachers/therapists.

We have had speech therapy, occupational therapy, worked with a child development specialist, attended CHIME Infant/Toddler program, and feeding therapy. We have had to fight with the Regional Center to pay for his therapy. At every stage of this process Kyle has improved. Aaron and I marvel at what a different kid we have in the 2 years we have been back in CA.

Today Kyle eats many foods. He tends to prefer sweet soft foods. He loves meat and eggs. He avoids crunchy items like chips, and crackers but will eat some sweet crunchy snacks. Kyle even takes food off Aaron’s and Tara’s plates. Yesterday morning, after he ate his two sausages, egg, and fruit, he started eating my husband’s eggs. I told him to “Leave Daddy’s food alone.” He came into the living room and said, “Mommy, my head is telling me I am hungry for more eggs.” I got up and made him two more eggs, of course.

Kyle loves eating and is not shy about telling me when he is hungry. The panic I felt every time we left the house has completely vanished. The guilt I have carried around with me since July 2005 has disappeared.