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.