Monday, August 2, 2010

Captain's Table

Some of my best memories from childhood involve food... my mother's shortbread cookies at Christmas, hot cross buns at Easter, buttery corn on the cob in the summer. My mother is a fabulous cook, her sweet and sour meatballs being the first dish emptied at the church's potluck suppers. My husband is Italian and the first time I ate dinner at his parents' house it was five courses -- not including dessert! I simply could not reconcile my love of food with my son's overt aversion to it. He hadn't always been like that.

When our son was a baby he would spit up most of his bottle. At first we thought it was because we weren't burping him enough but when he started projectile vomiting his stomach contents we ended up in the hospital for an overnight observation. The doctor ordered a G-I series. The testing didn't show any problems. Since he had been premature, the diagnosis was some acid reflux difficulties and a change in the formula brand was made. Eventually these dietary problems subsided and he started eating everything. He particularly loved creamed corn. I couldn't shovel it into his little mouth fast enough. He would grunt between bites, his mouth hanging open and his little body straining forward in the high chair. He reminded me of those nature shows of a mother bird feeding her chicks. He ate all types of pureed vegetables and fruits as well as most of the jarred meats. I prepared some foods from scratch but bought the prepared meats. He was a joy to feed, his chubby hands slapping the high chair tray and his little head bobbing around as he gummed a mouthful of food.

When I moved my son up to the jars of chunky mixed foods he began to gag on the consistency. He started refusing all spoon-fed foods, clamping his mouth closed and crying. I decided to try some finger foods instead. I gave him some shredded cheese one day and he gobbled it up. I soaked cheerios in milk and he ate those too -- until he choked on those and then refused to eat them again. I overcooked macaroni in chicken broth and had him try those. He enjoyed slurping the noodles from between his fingers until one day he choked on one. Pasta was now off his menu too. He started to resist eating anything besides the shredded cheese. Over a period of a few weeks he eliminated all but the cheese from his diet. I continued to offer different finger foods,but he would have none of it.

He had developed very specific tastes. He would only eat Sobey's brand shredded marble cheese. I shopped for groceries at Sobey's and this was the brand I bought. I didn't think his eating habits had become so rigid until we took a trip to New England. He refused to eat the American version of shredded cheese the entire six days we were away. We bought every brand in their grocery stores but none were acceptable to him. He wouldn't even put it in his mouth. It looked different than the cheese he normally ate. He was still drinking formula from a baby bottle so we had to give him more to compensate for his lack of solid food. He was waking several times every night and we guessed it was because of hunger. Each time he awoke he would drink at least 5 ounces of formula before he went back to sleep. It was now his only reliable source of nutrition.

I was concerned but our family doctor assured me that it was just a phase and he would get over it soon enough. Some kids are picky eaters. She suggested I just keep presenting foods to him and eventually he would try them. I knew better: he had absolutely no tolerance for food. I couldn't get him to try anything off my plate and when I put food -- other than cheese -- on his high chair tray he would start screaming and not stop until he had thrown everything on the floor. After awhile I stopped putting food on his tray. I was tired of scrubbing the floor three times per day. Occasionally I would tempt him with a cracker or a piece of fruit but he continued to refuse everything except the cheese from the Sobey's grocery store.

His poor diet continued until his diagnosis. The Psychologist, Paul McDonnell was married to an Occupational Therapist. Liz McDonnell worked at the Stan Cassidy Center for Rehabilitation in the City of Fredericton. This Center provides invaluable services to the entire province of New Brunswick. While they are widely known for their rehabilitation services for spinal cord injury patients, head injury victims and what not, they had developed a team who specialized in treating young children with disabilities or serious injuries. Their team was -- and is -- incredibly dedicated and knowledgeable. These professionals work as a team to treat the whole patient and I am grateful to have this calibre of services in our province. Our pediatrician had sent in a referral for their assessment team to see our son concerning his food intake. The timing was perfect: Liz McDonnell and the rest of the team were coming to our city as part of their whirlwind tour of several families. Dietary concerns are a high priority for the team so we had been fast-tracked for assessment.

The team came to my house in March to see my son and his aversion to food. They showed me how to use a 'first-then' schedule to explain to our son how to eat. This schedule is a picture board showing "first take a bite" followed by an arrow pointing toward "then get reward." The 'first' and 'then' pictures are attached to the base board by Velcro coins so the 'first' required activity can be changed (take a drink/take a bite) as well as the 'then' reward (bubbles/toy/preferred food). Later I would learn that first-then schedules are useful for getting kids through any 'sticky' moments. Whenever a child wants to do a preferred activity or get a preferred reward, he may have difficulty understanding that there is a prerequisite step such as first eating their vegetables before getting dessert or first taking a bath before reading bedtime stories or first putting on their coat before going outside. This visual aid helps the child understand the steps to receiving what they want.

The team was very concerned with my son's dependency on the baby bottle as well as his refusal to eat a variety of foods. They used a small Tupperware container, the size of a pudding cup. It had a lid that had been punctured with a small hole and a clear heavy plastic tube inserted that tightly filled the hole and stuck out like a flexible straw. The container was filled with liquid and the tube held up to my son's mouth. If he did not suck the liquid through the straw then one of them would quickly depress their thumb on the rubber lid and the liquid would squirt through the tube and into my son's mouth. It was simple physics but completely ingenious. They managed to get my son to drink a couple of ounces of milk this way. My son also nibbled at Arrowroot biscuits and Cheerios, two previously enjoyed foods. The team may even have had some success with apple sauce or pudding. I don't really remember now. It was a lot to take in that day. There were three people crowded around him, one holding down his arms, another holding the spoon while the third controlled the reward. My son spent a lot of the time loudly protesting but there was more success in their brief two hour visit than I had been able to do in two years. They instructed me to continue with these "food trials" in order to get my son to eat and generously offered to leave the Tupperware contraption for me to use.

I diligently tried the routine each day. My son continued to eat the dry cheerios and the Arrowroot biscuits but he absolutely refused to eat anything else I offered. When I brought out the little Tupperware contraption he clamped his mouth shut tightly or bit the tubing so I couldn't shoot the milk into his mouth. No amount of toys or coaxing could get him to co-operate. After almost two months of daily trials and no success, I gave up. I had a lot of mixed emotions. I am a mother and so feel my primary job is to nurture my child. Eating is a fundamental part of nurturing. I was failing at this part of motherhood which meant, at least to me, that I was failing at being a mother. Of all the aspects of my son's autism this particular obstacle was the most emotionally charged. I couldn't handle the daily reminder of my failings during the food trials so I stopped doing them. This was undeniably the biggest mistake I made on our journey. We veered off course and in the end had a much greater distance to travel because of my poor sense of direction. At the time I told myself that once he could talk and tell me what he liked to eat things would be easier. It was not.

A month later I received a telephone call from Barb Dugas, the dietitian who had come to my house that day with the rest of the team from Stan Cassidy. She was following up on how the food trials were going. I complained bitterly about the lack of success. Barb is a kind and understanding soul who heard in my voice the frustration I felt. She suggested I bring my son to Stan Cassidy for a week of food trials. The earliest appointment I could get was several months away. They would have my son eat breakfast, lunch and supper there for five days straight. At the end of the week she promised he would be eating meat and potatoes! I thought she was exaggerating but was thrilled with this opportunity and grateful for Barb's compassion.

The appointment was set for the Fall. In the meantime we ran our ABA program. September came and we no longer had any workers. The nanny quit that month to pursue other opportunities. This lull in employment was the perfect time for a week at Stan Cassidy except for one small problem with childcare. The Stan Cassidy Centre was located in Fredericton, a two hour drive from our home. While I was at Stan Cassidy with our son, there was no one to look after our daughter at home. My husband could not spend a week at home with our daughter because he had to make money. I travelled with both children to my parents' home in the town of McAdam. The Stan Cassidy Center was an hour's drive away, instead of the two hours from our home. I could leave my daughter with my mother while I drove my son to his daily appointment. Staying with my parents was the only solution.

Monday morning did not start off well. We needed to be at Stan Cassidy by 9 a.m. so that meant I had to leave my parents' house by 7:30 to ensure I had ample time to find the address. I had been instructed to NOT give my son anything to eat before the appointment. While we were getting ready to leave my son got very vocal about wanting a bottle. His shouting woke up his sister. When she saw I was leaving without her she began howling. She had not spent a lot of time with my parents and was scared to stay without me. I made her a bottle to calm her down and provide her with some comfort but it only served to further incense my son. He tried to take the bottle from her. I kissed my crying daughter goodbye and wrestled my son into his car seat. As I drove away my daughter was still screaming at the kitchen window. My son started screaming too as well as kicking the back of my seat. He began chanting 'bah bah' over and over again, using the word approximation we had taught him for bottle. When none was forthcoming he would begin screaming and kicking again. This verbal assault continued the entire drive to Fredericton. By the time I reached our destination I had a splitting headache.

I sat in the waiting room and filled out the requisite paperwork. I watched the clock. It was now 9:30 and we were still waiting. I knew my son -- who would be turning 3 in a couple of months -- must be starving. When they had told me not to feed him before the appointment they had explained they wanted him to be hungry and therefore more willing to eat new foods. My son spent his waiting time climbing on and under the various couches and chairs in the room. Occasionally he would start rooting through the diaper bag looking for a bottle and muttering 'bah-bah' repeatedly. Cynthia Howroyd appeared. She was working at Stan Cassidy that day and had heard we were there. We chatted for a few minutes and I confided in her about the rough drive. She suggested I feed him when he awoke in the morning but nothing during the ride to Fredericton. She also got me some Tylenol for my headache. As always, I was grateful for her help. Finally the team came to collect us.

I walked with my son to a small room down the corridor. They had a special high chair for him and several toys and gadgets of interest. They proceeded to use the Tupperware drinking cup and various pureed foods. My son looked terrified. He didn't like the toys they had. He cried constantly and tried to climb out of the highchair. I sat at the back of the room while the team worked their magic. After an hour he was released from the chair and I was told to come back at 1 p.m. We had two hours to kill. They told me not to feed him. I took him to McDonald's to play in their ball pit. He had eaten very little food during the session: a few spoonfuls of applesauce, about an ounce of milk. He had not had any formula or cheese since bedtime the night before. It had been 16 hours since he last ate anything substantial. He was cranky. Again.

When we returned to Stan Cassidy, my son bolted as soon as we reached the front entrance. He didn't want to go back inside. I had to carry him in to the waiting room and restrain him there. Thankfully it wasn't a long wait. We stayed in the room for two hours this time with lots of play breaks in between bites and sips. The team kept asking me if I was alright and saying they understood how hard this must be for me. I think it concerned them that I was sitting quietly, neither praising nor consoling my son. I felt that this was their show and I was meant to be a spectator, not a participant. My son was use to me leading therapy time and I didn't want him to confuse who was in control for these food trials. I assured them that I was not upset by the kicking and screaming because I wanted him to eat too. They suggested I try to spoon feed my son. I did as they requested. I am unsure whether this was part of their process or a means to test my commitment but after that session they never asked me to feed him again.

At the next break we went to the mall to walk around. It was rainy and cold outside. There were very few places I could take him. I had not had anything to eat myself but didn't feel hungry. I hadn't realized that this would be the routine of the week. There was so much down time between sessions that I could have been doing two full sets of his programming each day. I thought it would have been full day sessions so I hadn't brought his program book and supplies. My son wandered around the mall, peering into garbage cans, climbing under and over the benches, grabbing things off of display shelves. Slowly the time passed until we could return for the supper time session.

I didn't bother trying to get my son to walk into the building. I carried him in as he tried to wriggle free. I sat in the small room and watched my son struggle and resist. The team continued their success with some bites and sips. Finally it was time to drive back to my parents' house. My son was really hungry now. It had been 24 hours since he had eaten any cheese or drank a bottle. He kicked and screamed and chanted 'bah-bah' the whole way. I arrived shortly before 8 p.m. It had been a twelve hour day and my headache had returned. I immediately made my son a bottle and gave him shredded cheese. He ate and drank greedily. I spent a little time with my daughter who seemed miffed by my absence and not entirely happy to see me. Then I put them to bed and got ready to do it all over again the next morning.

The week continued with the same routine, except for two minor changes: I brought in some new toys to use in the sessions since he wasn't motivated by their reinforcers and I started feeding him before we left in the morning. I also brought a bottle with me to give him on the drive back to my parents' house. I brought an extra bottle too, in case he needed it. My son had to eat and he was certainly not getting enough during the food trials. I didn't want him to get out of the habit of drinking his liquid food supplement either. It was his main source of nutrition. As the week progressed I kept waiting for the big breakthrough -- and the meat and potatoes. At the end of Thursday's late afternoon session, I asked whether they thought he would be ready for that kind of meal the next day. They assured me he would.

Friday dawned full of promise. It was one of those crisp Fall days with brilliantly coloured leaves and bright sunshine. "Today is the day my son will eat a meal" I told myself as I prepared for the drive. I was so filled with hope. There would be only two sessions that day. One at 10 a.m. and the second at 2 p.m. (it was Friday afterall). Liz McDonnell would not be there for the day, having other commitments for her talents. Another team member took over the lead. The morning session progressed like all the others. The afternoon session was another thing entirely.

I had bought a ball and bubbles and we spent the time between those two sessions on the lawn at Stan Cassidy. I blew bubbles for my son and kicked the ball for the two of us to chase. We sat in the car and watched Teletubbies and Blue's Clues on the portable videocassette player. I kept him distracted so he wouldn't ask for a bottle. I didn't feed him anything. Finally it was time for the last session of the week. I crossed my fingers and in we went.

The meal consisted of mashed potatoes mixed with pureed chicken. It looked exactly like the chunky baby food my son had first gagged on. I told them this. They assured me it would be fine. After my son had two or three spoonfuls of the mash he gagged. He kept gagging when they gave him the next spoonful. Then he threw up. They wiped him off and fed him some more. He gagged again. They fed him again. He threw up again. They wiped him off again. This cycle of feed-gag-feed-vomit-wipe was repeated until most of the mixture had been scooped from the bowl. There was my meat-and-potatoes meal. They had done just as they had promised and it had been a spectacular failure.

I drove back to my parents' house angry and bitter. We had wasted a week of precious therapy time. When I had sat in McDonald's on that first day of food trials I had a delirious dream of buying my son a Happy Meal at the end of the week. I was hoping for a miracle. What I got instead was a child who not only refused to eat food but now started gagging whenever he saw a spoon. It took several weeks before he would sit in a high chair again without crying. I became determined to find a better way to share my love of food with my son. It would take a long time to get back on course with eating. It was nearly two more years before we ordered that first Happy Meal... and it was a very happy meal indeed.

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