Gains and Losses

Boo Bear has been a little more subdued these past few weeks. He brought home a cold from school which he cannot seem to kick. Because he is a generous guy, he shared it with the rest of the family. Since this is the first time any of us have gotten even the sniffles in the last 15 months, I am rather insulted. The world is opening back up, thankfully, but our immune systems have some catching up to do.

When Boo feels ill, his appetite is the first thing to depart. He is a skinny kid anyway, always on the go, and calories around him do not stand a chance. I was getting him out of the tub the other morning when it struck me how terrifyingly thin he had become. His appetite had been off for about a week and he seemed more subdued than usual. Instead of rocketing around the house, or joining me for long walks, he was staying in his room, curled up on his bed or bean bag chair, playing with his iPad. He did not seem interested in even his favorite foods. I asked his teacher what she was seeing at school. She checked in with staff and reported that Boo was only eating a bite or two at breakfast and lunch and turning down even his most favorite foods. This was Monday. I called and made an appointment for him with his doctor and scored an appointment for Wednesday. Tuesday I left work early, stopped by Subway, and brought his lunch to school. He was happy to see me and it was a beautiful day to sit out in the courtyard and eat. Sadly, he only drank the Gatorade and took three bites of his sandwich. He ignored the rest of the sandwich and the chips. Half an hour later his teacher came to get him and I called it quit on lunch. I gave her the remainder of the lunch and asked her to offer it to him later, or save it for the next day. When he got home that afternoon I was able to interest him in a chicken breast and a bit more sandwich. His PCA took him out for ice cream, which he enjoyed. Wednesday I picked up him from school for his appointment. Staff told me he had eaten a bite or two of school lunch, the rest of the sub, and some chips.

At the doctor he waited patiently in the lobby, using his Nova Chat to request PBS kids. Soon we got called into an exam room. The nurse put him on the scale and he weighed in at 112 pounds and 6 feet tall. Both of us gasped. He had weighed in at 117 a month ago, and that had been skinny enough. The doctor examined him from top to toe. I was proud of him when he used the Nova Chat to tell the doctor that he had a cold. He would not tell her if anything hurt. I love Dr Wilson because she intuitively gets kids like Boo. She talks to him like an adult and includes him in all of her conversations. Boo responds well to her, even letting her listen to his heart, look in his ear, and examine his throat. Getting Boo to open his mouth wide enough to look inside practically takes an act of Congress, but he did it for her. She could find nothing wrong with him besides being drastically underweight. She ordered a bunch of lab tests and some nurses came in to take blood. Boo was an absolute angel with the blood draws. As long as he could hold my hand, play with his device, and watch what was going on, he was fine. The doctor said she would call as soon as labs were available. We headed out to Target to pick up some groceries and a celebratory Lemonade Freezie from Taco Bell. Boo enjoyed the Freezie but only picked at the chicken that I had picked up for him. Over the course of the evening, I kept trying to slip him bits of chicken, crackers, cookies, Gatorade, anything to keep the calories coming in. He seemed distressed by a large amount of food in a bowl, but if I just kept slipping to him a bite at a time over the course of the evening, he would eat.

RIght now I can hear a lot of parents of a different generation wondering why I am worrying so much. “He will eat when he gets hungry”, is the familiar refrain. Well, probably not. Autistic kids and adults can be notoriously picky eaters. Things smell, taste, feel different to them then they do to neurotypical folks. Boo’s choices in foods have broadened immensely since he was a toddler, but when he is feeling ill, all bets are off. Even comfort foods are an iffy proposition.

Later in the evening, the doctor called. She said his lab worked look perfectly normal. The labs on celiac disease and thyroid levels were still pending, but all his organs were functioning, his electrolyte panel looked good, he did not have mono or an elevated white blood cell counts. She said this was good news, but also frustrating as we still do not know what is causing the weight loss. She said she would call me back tomorrow afternoon when she got the rest of the results.

Boo conked out early, leaving me to toss and turn in my bed (I am still battling a nasty head cold) and wondering about autism, anorexia (a beast I am only now beginning to recover from) and life in general. Eventually, I gave up on Morpheus , brewed some coffee, and began working on this blog. I will send Boo to school today with a lunch bag full of his favorite foods. His staff knows to encourage him to eat in little bits over the course of the day. One of my favorite friends in California, who has a son much like Boo, is going to send us some chocolate cannabis to try and boost his appetite. So, I am both happy and worried. I am very proud of Boo for being such a trooper at the clinic and being able to tell his doctor that he had a cold. This is a huge breakthrough. I am very worried about his being so thin and subdued. If you could send my boy some love, some good vibes, or a calorie or two, it would be greatly appreciated. Peace out and be good humans.