Guest Author - Bonnie Sayers
Sometimes as parents of children, teens or adults on the autism spectrum we hope to find someone who has experienced something similar to what we currently are dealing with in our own homes. It helps to know we are not the only ones with a kid who is doing that or having said difficulty or not being able to break a habit that should have happened years earlier.
What I am about to share is not easy to publicly state, but if this could help one other parent know they are not alone with this dilemma or situation than it is worth the embarrassment. Several years ago I read an article in a magazine that had the same effect on me. I was able to locate through some research the Father in the article to contact him to seek some advice. A few years later I followed up as we were still dealing with the same issue and found out his son had been placed in a group home.
My nonverbal son Matthew is fourteen and turning fifteen in a few months. From 2003 to 2008 he received Feeding Therapy from a Medical Group. The Feeding Team consisted of a Dietitian, Occupational Therapist, Marriage and Family Therapist and a Developmental Pediatrician. This was funded through the Regional Center. For a few years therapy was at their location, which housed a few kitchens and therapy rooms.
This is where Matthew started on his anti-psychotic medication. They also visited at school through the years and then I requested the visits to be at our home where it was needed the most.
For the past four months we have received ABA in the home four nights a week. What the Feeding Team could not tackle in a five year period was finally mastered in a few months with the help of some behavior therapists.
Matthew can now drink a variety of liquids from a cup, utilize a fork, eat a variety of foods and no longer drinks from a bottle. For fourteen years my son has been getting the bulk of his nutrition from a baby bottle. He went from milk to ensure plus to a soy alternative drink to soymilk to ricemilk.
He would consume up to six bottles a day. Most often the only way to stop the screaming and wall banging was to let him have a bottle. At last count prior to the start of behavior therapy there were 21 holes in walls throughout the house we have rented for twelve years.
Two years ago summer camp stopped when the couple that ran it moved up north without any prior notice to families. Matthew spent eight summers going there. The classrooms had small refrigerators and there was always a bottle there for when Matthew might need it when they came back from a walking trip. He would drink one on the way home in the car. One summer I had jury duty which meant he spent two hours after camp supervised with access to bottles for one week.
He took his medication in the bottles. At one point he was drinking from a reusable squeeze type bottle that had a little straw inside. We ended up tossing the straw and he drank from the opening. This would be sent to school with soymilk and he liked soy yogurt. His food repertoire was string cheese, chicken nuggets, hot dogs and bacon. He did learn to like chicken noodle soup, tomato soup and squash soup from feeding therapy visits.
There were many food jags where one day he would stop eating a food item and never want it again. The foods offered through the Feeding Therapy were all finger type foods. I requested utilizing utensils so that Matthew could sit at the dinner table instead of pacing through the house with a bottle attached to him.
Five years ago when we took a trip to San Diego for three days to visit Sea World we had a supply of bottles and soymilk. We made sure our room at the Holiday Inn had a refrigerator and microwave.
The article I mentioned earlier that I related to had a picture of a Dad with his son at a park and he had a bottle that contained apple juice with his medicine. It was the first time I had heard of another family that had an older kid drinking a bottle.
I had inquired to the Medical Group if they could put me in contact with other families receiving Feeding Therapy, but that never materialized. The reports from Feeding Therapy looked organized, but that was not how the sessions went. We were left on our own without ever mastering the goals.
The whole experience with them is still hard to put into words, but through ABA the end result is that Matthew is eating turkey burgers, porkchops, macaroni and cheese, tacos, burritos, spaghetti, ravioli, peanut butter and jelly, chicken strips. He drinks orange juice, cran-raspberry juice, water from water bottles and in cups, yogurt drinks and ricemilk in a cup.
He even requests the juice and easily opens the refrigerator to open a water bottle and walks around with one in his hand. He does the same thing with water bottles at school, except he picks up the ones from the adult aides and drinks them.
This past summer there were a few weeks of vacation between the extended school year (ESY) due to furloughs. I spent those weeks at the drive through at Burger King everyday to buy chicken fries and french fries for Matthew at a cost of $50 each week. As I would place an order the guy inside would always say - "Oh, its you".
The ABA therapy started Dec 1st. Over the course of the three week holiday break I took Matthew with me to the laundromat Sunday mornings. One Sunday morning we went to Burger King and I ordered french toast sticks for Matthew. When I drove up to pay and get the order the guy who used to know my order and voice was very surprised to see me and asked where I had been. I pointed to Matthew in the back and said he changed his eating habits!
In January the Supervisor and Director for the ABA company came out to discuss the bottle and toilet training. That day we stopped the bottle. Matthew's Dad comes over on weekends for a few hours and I go out to do errands and workout at the gym. Matthew knew there was still a bottle in the cabinet and was drinking two during these times both Saturday and Sunday. We saw a difference in his behaviors on Mondays.
I was worried the Dad would not be able to handle Matthew's behaviors if he did not get the bottle, but it was hindering the progress we made and I tossed it in the garbage in front of Matthew last Saturday and they all survived the few hours I was out on Sunday.
The wall hitting has ceased so now the holes can be patched, except we might wait on the bathroom since April 1st is the start of Toilet Training.
Matt is also utilizing his Go Talk communication device more often in the home and is no longer attacking me. He washes his hands on his own and we are currently working with ABA therapists on tooth brushing.
We should have started ABA years ago.