Still learning

By now you think I would have memorized how to introduce new foods to Kyle. I sat in almost every session with Julie at PCDA. I duplicated her techniques at home. I have taught them to other people. I have even considered reenrolling in college to become an occupational therapist. As much as I know, Kyle is still teaching me.

He is in first grade now. Most of the feeding issues have disappeared except for his aversion to crunchy foods and chocolate. He will eat sweet crunchy foods but only if there is no other options available. His best friend convinced him to try Cheetos and chocolate pudding. He will take a few bites of new foods when we ask him. Some new foods have been added to his diet (pepperoni) while other foods have been tried exactly once (avocado).

Kyle gets a hearty breakfast every morning. I make him two eggs, two sausages, small portion of fruit, juicy-water and five pieces of cereal. If he is still hungry after that I will give him a piece of cheese, yogurt or applesauce. On the weekends, I make pancakes along with his normal breakfast. Every other day he eats a multivitamin.

Last week, I told him we needed to try cereal in the morning. Frankly, I am tired of getting up every morning and making a big breakfast. Once in a while I would love to sleep in and tell Kyle and Tara to pour cereal for breakfast. I was so proud that I prepared him in advance for the change.

The next time we were at the store, I told him to pick any cereal. He walked up and down and chose Froot Loops (my personal favorite) because of the colorful bird on the front. We talked about how good Froot Loops are and discussed how he would eat them the following morning for breakfast. He was excited to try the bird cereal.

I got up, poured him a big bowl of cereal handed him a spoon and turned to make his sausages. He proceeded to eat the Froot Loops one at a time. After a ½ hour he had only eaten a small portion before announcing he was done. We were late for school and he had a very small breakfast compared to his normal one. I began rushing around to see what I could feed him in the car (thank you Nutrigrain bars and applesauce).

See what I forgot is Kyle still needs to be introduced to foods slowly…even when he wants the change. I actually laughed at myself. What was I thinking? I quickly regrouped. The next morning he told me he didn’t want cereal. I gave him five milk soaked pieces to eat along with his normal breakfast. Every day since then, I have increased the amount slightly. Maybe one day I will be able to plop a big bowl of cereal in front of him and expect him to eat it but I am okay if that doesn’t happen for a few months.

Still learning new lessons after all these years.

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.

PCDA Part Two

Feeding therapy stopped for two months due to a mistake made by our Regional Center coordinator. The experience with our coordinator highlights what is wrong with the system. I did not know services should have continued but HE did. He did not put through the paperwork when we switched from the Early Start Unit to the School Age Unit. If the service coordinator and parents disagreed, all services keep going until the dispute is settled. The head of behavioral services had a meeting with us and tried to convince us that we needed to switch to behavior therapy. His autistic brother had great success with behavior therapy.

During this time, I was so frustrated and angry. Finally we had made significant progress in helping Kyle eat again, and the process was stalled because some director at the Regional Center did not like the approach we were taking (he never met our son). After our meeting with him, I was even angrier. Julie and our nutritionist Patty, attended the meeting and expressed their opinions. He revealed that he did not even read the reports we sent to him. After promising to read them, the meeting ended. Later our service coordinator emailed me that we were denied services and a third party assessment needed to be completed.

The email I wrote in response sums up what I was feeling at that moment:

Regional Center Clinical Team,
We firmly believe that our son's lack of eating stems from his difficulty processing
sensory information. Our son needs to continue therapy at Pasadena Child Development Associates. Before starting PCDA, he ate six bites of pudding. That is all he ate for an entire year!!! With intensive therapy from Julie Miller and consultation with other members of the team, he has started sucking lollipops, chewing on licorice, slurping strawberry syrup, and recently licked yogurt from a spoon. This is incredible progress and we have only been clients of PCDA since May. In four short months, Julie has managed to make more progress than any other therapist. Why would we switch when this therapy is obviously working? Why would we "try" a different therapy when she is succeeding? You still have not answered that question. I know you believe PCDA is biased so their opinion was disregarded. Our opinion was solicited and apparently disregarded as well.

At first we were told this was a medical condition. After receiving a letter from his doctor, the Regional Center claimed that behavior therapy (which is NOT tailored to our son's needs) would address the problem. We were also told that LAUSD would fund this type of therapy. The story keeps switching which we do not appreciate. While we are working out this situation, our son is not moving forward with his progress.

We were surprised that information about our son was not read prior to the September 12th meeting. We emailed every report we received from UCLA, NLACRC, PCDA, CHIME, Lehrhoff and Associates, Hand in Hand, and KIDS in plenty of time to be reviewed by the team. Is there another email address where we should send reports?

We will agree to the interdisciplinary assessment by Children's Hospital of Los Angeles. We would also like a written copy of what we can expect from this process from this point forward. We would like a copy of our rights during this process.

Our goal is to act in the best interests of our child. We know how successful feeding therapy has been. We are confused as to why this has been not made clear to you.

I quickly compiled all of the reports I had that stated Kyle’s feeding issues were sensory not behavioral in nature. Someone who is not familiar with the different techniques may wonder why we were making such a fuss. Behavior therapy has a different approach and underlying assumptions for why a child doesn’t eat versus a sensory approach. Although Julie was eclectic in her approach to Kyle’s sensory needs, she was primarily using the SOS (Sequential Oral Sensory) Approach to Feeding developed by Dr. Kay Toomey. Our service coordinator had our feeding therapy temporarily reinstated until we received the results of the CHLA assessment once his mistake was pointed out to him.

I contacted CHLA to see what reports they needed from me. I prepared a professional looking binder complete with every report I had on Kyle. Looking back I probably seemed crazy to the therapists at CHLA but they were not aware of how hard we were working to help Kyle.
Their assessment was comprehensive. The team consisted of staff from the following disciplines: Nutrition, Occupational Therapy, Social Work, and Psychology. The final recommendations highlighted the importance of addressing the sensory sensitivities that underlie Kyle’s limited diet.

Regional Center had no choice but to fund Kyle again for feeding therapy. They started complaining about the way Julie wrote the progress reports. Our feeding therapy was only extended for one month not the unusual three until she submitted the report. Thankfully, Julie agreed to write and rewrite the report until they accepted it.

Finally, we were back on track. Through play in the big gym, and the sensory drawers (drawers filled with beans or rice) and exposure to a variety of food in the kitchens, Kyle was eating pudding and applesauce regularly in sessions. He even ate some spaghetti at dinner one night. His school was working with us to include him in lunch and snacks. They wrote reports to me daily. School, home, and therapy were all working together for a common goal…getting Kyle to eat.

Then I lost all hope.

See PCDA Part 3.

PCDA Part One

During our transition meeting with Los Angeles Unified School District, and Regional Center, Kyle’s special education teacher empathically stated that she thought Kyle needed to receive feeding therapy at PCDA. We had tried to contact them previously but we were unsuccessful. Our new service coordinator contacted them and got us an initial evaluation.

We went in and met a pediatrician, a nutritionist, a speech and an occupational therapist. Kyle and Tara were both with me. They asked the usual questions about Kyle’s eating habits. At one point, Kyle was due for a snack. The nutritionist asked if she could turn on the video camera. I agreed and tried to get Kyle to eat a banana, a previously favored food. He refused so I offered it to Tara. Kyle drank his shake quietly while we finished the evaluation.

The results were similar to all the other reports:

Kyle had an open mouth posture and was noted to drool throughout the evaluation. He has difficulty processing sensory information that is impacting a number of skills including eating. He is resistant to solid food in general and is particularly sensitive to the texture and taste of food. Kyle does not like to engage with a number of edible and non-edible textures such as sand, play-doh, and paint. He does not like clothes to be put over his head and certain clothing textures bother him. His refusal to accept solid foods appears to primarily be related to overall rigidity and inability to modulate the sensory properties of food. It is anticipated that his oral motor capabilities would allow him to manipulate a wide range of age appropriate foods. However, his low tone, and probable difficulty with motor planning may be impacting his ability to manipulate certain textures of food.

We started therapy twice a week in May 2006. Each session was one hour long. PCDA has little kitchens throughout the center. Julie Miller, the occupational therapist, assigned to us was easy to talk to and knowledgeable. At the time, our meals mainly happened in the car. I needed her to understand what our home life was like to help guide our therapy session and her suggestions.

If you don’t have a child in your life who does not eat, you probably think eating is a simple process. Not so. Eating consists of many steps that most of us take for granted. We started playing with food, tapping it, touching it, kissing it and licking it. Sometimes we had two taps, and three licks. Other times, we had three taps and five licks. Kyle was allowed to choose. Julie would say, “Do you want three taps or five?” He had to feel like he was in control of what went into his mouth.

Progress was slow. The goals were small and didn’t necessarily involve eating at first: “Kyle will explore new food items using therapy assistance with moderate verbal assistance.” and “Kyle will demonstrate the ability to appropriately blow 3 of 4 different types of whistles so that the note is sustained for at least 2 seconds 80% of the time.” I can remember thinking “What the heck does any of this play have to do with eating?” But I trusted Julie. I trusted that she knew what she was doing with Kyle. When I had a question, she explained the answer to me but never talked down to me. She gave me extra resources and information for me to research. I reported progress at school and home to her. Julie even drove to Kyle’s school, observed him during snack time, spoke to the teachers, and made suggestions for improvement. She celebrated with me when Kyle started chewing licorice, and licking yogurt. In four short months, she accomplished more than the other therapist. Everything Kyle ate or tried in the therapy situation, we were able to duplicate at home and school.

Then funding for feeding therapy was not renewed after Kyle’s third birthday. All progress stopped for Kyle.

Please see PCDA Part 2.

Afraid of the Kitchen

Patience, joy, gratefulness, appreciation and humility are all new traits I have acquired since Kyle’s diagnosis. Kyle has taught me more than I will ever teach him.

Unfortunately, one thing I taught him was to be afraid of the kitchen. For at least three months, Kyle would not stay in the kitchen. He would walk right up to the edge, scream for his shake, run in, grab his cup, and quickly move to another room. He hated everything the kitchen represented.

Like other aspects of autism, the signs of his oral sensitivity were present at birth but I did not recognize them. We had to be coached by a lactation therapist in the hospital, he cried himself to sleep rather than take a bottle from my husband, spit out his rice cereal, and he resisted solid food. With time we broke through each barrier and he started eating normal food. He was eating three meals (baby food mainly) and three snacks every day. He was eating spaghetti, tofu, rice, pizza, eggs, bread sticks, cereal, pudding, crackers etc… Most of his nutrition came from baby food.

When I switched from Stage 2 to Stage 3 Gerber Food, Kyle started openly refusing to eat. I would coat his food with applesauce in order to get him to eat. Applesauce on everything worked for months. Eventually he would refuse foods based on the jar then stopped eating all solid snacks. I remember not knowing what to do but I thought he was just being picky. Since he was my first child, I was so unsure of my parenting skills. I don’t reach out to people easily for help or advice. When I did, nobody was experiencing what I was experiencing.

Finally on July 30, 2005, I gave up trying to feed him. I was chasing him around the kitchen trying to put a bite of mashed carrot in his mouth. I knew that running through the kitchen with my son screaming was not right. I just didn’t know what else to do. My son was only drinking milk and juice for his nutritional needs.

At his 2 year check up, his doctor told us to switch to Pedisure and Carnation Instant Breakfast. She also told us that she suspected Kyle was autistic. After a few years had passed, I told his doctor my reaction to her news. She said, “Parents come in here frustrated because their child isn’t talking or eating and no one has told them why.” I felt guilty about my actions; I knew I caused his problems. I know that I could have handled the whole feeding situation better. He stopped eating solid food for 2 ½ years. When he started eating again, I finally let a little of the guilt go.