Guest Author - Bonnie Sayers
My son Matthew is almost ten and has been receiving feeding therapy since December of 2002. Back in November of 1999 both Nicholas and Matthew had evaluations at the Feeding Development Clinic at Children's Hospital in Los Angeles. These assessments were funded by the Regional Center.
The following items had to be filled out and mailed back prior to the appointment. Patient/History Information, Feeding Ability, 3-day Food Intake, Nutrition Screening, Developmental/Behavioral Questionnaire.
I had to bring the following items on the day of the evaluation:
Feeding equipment - utensils, cups, bottles, support items
Food & drink that child can/will accept - finger foods and spoon feedings
An item of food or drink child does not like
I made a list and brought a thermos of milk for Matthew, a juice cup and juice box for Nicholas, plus a bottle for each of them. They were 3 and 4 years of age at the time. I had silverware and bowls, applesauce, yogurt, raisins, gerber bars, potato sticks and rits bits.
I was informed not to feed my children prior to the appointment. We were to arrive at 8:45 for 9 and 11 am evaluations. I also brought along the weighted vest Matthew wore during this time period.
Each child had a diagnosis of Autism when the appointments were made. The evaluation included a nutritionist, Occupational Therapist, Pediatrician observing through a camera while we were in a room eating and playing. There were two interns and a Psychologist.
I remember that the room we were located in was very warm with the heat on, which made it very uncomfortable. We were there for hours, going from room to room, being watched from a mirror and a camera.
The feeding ability form I filled out prior to the evaluation had several sections to it. Sucking, swallowing, biting, chewing, eating habits, communication and nutrition.
These questions covered - Does your child make a fist when sucking or grasp for the bottle? Can your child swallow liquids? What foods are difficult to swallow? Is drooling a problem? Does your child bite the spoon? Does your child suck food rather than chew it? Do you spoon feed your child? Does your child drink from a cup? Does your child sit during feeding?
Does your child prefer foods that are sweet, salty, sour, spicy, hot or cold? How much milk does your child drink in one day?
The Nutrition screening form asks about vitamins, diarrhea, constipation, vomiting, feeding tube, anemic, dental problems and the activity level of the child.
The Developmental/Behavioral Questionnaire includes these questions:
Specific concerns for the child, how many pregnancies have you had, miscarriages or abortions, how much weight gain during the pregnancy, issues during pregnancy like anemia, smoking, high blood pressure. There are questions about the details of the pregnancy like a normal delivery, labor, forceps and umbilical cord. They ask the weight at birth and the issues like jaundice and birth defects.
The remaining questions are how long were you in the hospital, was the baby breastfed or bottle fed, surgeries and medications. Then the child's medical history like hay fever, ear infections, sleep problems, hospitalizations. Then there is the child's developmental history - like when they were able to sit unsupported, walk alone, toilet train, pedal a tricycle, dress himself and tie shoes.
The first page asked for the age and grade completed for parents, whether they lived at home and their occupation and then siblings. I clearly marked the father was not living at our residence.
The evaluations I received were seven pages for each child. They covered the reason for referral, description of the clinic assessment process, background information, current eating pattern, individual assessments and findings - nutrition. This had measurements, dietary data and impression.
Next in the report is listed Pediatric Evaluation to see under separate cover. Oral motor/neuromuscular - assessment procedures, summary, behavioral/psychosocial, impression, summary of findings and recommendations.
These reports and the evaluation process was so overwhelming that we never pursued further services with Children's Hospital. They wanted to re-evaluate both kids. I went there specifically for feeding issues. They also referred me to Mental Health Services.
I was already receiving home therapy from an organization I found through the WIC program and did not see the reason to see a different therapist. I thought the whole process was insulting to me as a parent trying to get us to join several of their programs for my kids instead of just offering suggestions and referrals based on the purpose of the visit.
The most outrageous report was from the Pediatrician. Under assessment he wrote the following: Though Nicholas reportedly has autism, his behavioral findings do not seem consistent with autism. Another possible contribution to his behavior may be modeling of parental and sibling behavior, especially in view of his father's reported schizophrenia and his brother's reported attention deficit disorder and autism.
Plan - UAP Psychology and Nutrition will develop an appropriate intervention based on the psychological and developmental re-evaluation referred to below. UAP Psychology will review previous psychological assessments of Nicholas's condition and refer for re-evaluation of his psychlogical and developmental condition.
UAP Care Coordinator for this case will investigate whether Nicholas's blood level has been determined in the past. If not, a lead level will be recommended. Nicholas needs dental evaluation if not previously done. He recommended the same for Matthew, except he suggested sedation for a dental visit.
Their father does have Paranoid Schizophrenia, but has never lived with us and only had limited visits sporadically over the years. For a Doctor to come up with those reasons to get the kids re-evaluated was in poor taste and one of the reasons I felt justified in not continuing with any services through the Feeding Clinic at Children's Hospital.
Nicholas had a psychological evaluation with the Regional Center, and then Social Security sent us to a professional for one and one done through the school district. I felt like this team of so called professionals just wanted to run a string of tests on my kids since they both had the diagnosis and milk the system for all sorts of services. This was in 1999 and not many families had two kids on the spectrum at that time.
This is what led me to not follow through with any of these recommendations. Parents need to know just because they request an assessment does not mean they have to do as the professionals suggest. If you do not feel comfortable with the process, find another agency or clinic or postpone the therapy until the time is right.
In late 2002 I let the Regional Center know I wanted to get feeding therapy for Matthew. We went to a clinic in Pasadena, where we have been going ever since and they bypassed the assessment process since we had it done at Children's Hospital a few years earlier. It turned out that their Dietitian was the same girl who was the Nutrition Intern at Children's Hospital. She remembered us and I did not hold that experience against her. I did not recall her since there were several people at that evaluation.
Hovanessian Feeding Foundation
Los Altos Feeding Clinic
Mealtime NotionsVHS and DVDs on tube feeding
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.