Part 2: Grant stopped eating

Yesterday I shared with you our struggles over spring break. These were a few hard outings, but nothing in me thought this was going to evolve to a full blown eating disorder.

April of 2016 was an intense month. When Grant returned to school many things started to unfold. His behavior escalated. Screaming and crying after school for a few days in a row. My PCA/para/friend was having an immense amount of issues engaging him and with some other issues; I knew he was about to be excused from daycare for good.

Then the school, the same week, called to explain that his level 3 program was fine, but maybe there was something better. This eventually led to our decision to send him to a very small, very appropriate level 4 school for him close to our home. I am making it sound simple, but that was far from it. I fretted over that decision as things at home were going from worse to harder. Not only was he hitting himself, he was also attacking food like he had to kill it before he ate it. You couldn't trust him for a second around his food. He would flip the plate, eat off the floor, smear it. It was a true disaster. In my head, I am telling myself "DON'T REACT". But, as usual, Grant finds something that is nearly impossible NOT to react to.

We tried all sorts of strategies in April. We let him eat off the floor, we tried having picnics, we wondered if it was a phase, we allowed his new behaviors, we didn't allow his new behaviors. We eventually called our friend/behaviorist to come out. She couldn't come until early May. I held on. Was I making things worse or better? School was equally struggling. I was hoping she knew how to respond. She had helped us the summer/spring before and had helped me decrease his aggression the year before. I was calling on her again out of desperation and hoping that she was going to see this through a new lens.

But, she didn't have the answers. She was deeply concerned about his SIBS. I sort of pleaded with her. Let's ignore the SIBS, I told her, but she didn't agree. I was lost. She suggested KKI. She even suggested another behavioral company. But, everything moves fast and slow in our world. The problem is this is food. Tomorrow he will eat, not just once but 3 or more times. How we will respond without making this worse?

And we didn't know. There was too much going on. April, this was just horrible. March was just as bad with all the sickness and the SIBS. May continued the nightmare, but evolved to something worse. He just wouldn't eat. I suppose his logic was, if you aren't going to let me eat the way I want to; then I just won't. Maybe. This is one theory. Because we didn't let him eat like an animal. I wasn't going to let him eat that way. So he was asked to sit between us or in between our legs. We were going to do hand-over-hand, we were going to feed him if he had to. If he attacked the food, we put it away. We didn't know what to do; so we did what we thought we were supposed to. Let's be real. There is no guide book here. He was 8!! He had never behaved this way around food. The answers were far from clear.

May equalled a new private hell, but nothing like what June was going to be. I remember Memorial weekend. Grant didn't eat 3 days straight. May had evolved to Grant would eat at school, but not at home. And we really didn't know how much he was really eating at school and we didn't understand how they were getting him to eat, but we weren't. May 5, we had an IEP meeting. We discussed eating issues over every other issue. It wasn't clear how they were going to move forward or how we would at home.

The last day of school is not the last day of school for teachers. I was a mess that day. Sitting in a meeting where we are supposed to be saying good-bye and eating a nice breakfast. I try really hard to hide the total fear I have of my now present summer vacation. It was a Friday and I was scared to death. I think it was the 2nd week into June and I knew in my gut that Grant was done eating. He would eat for someone at school, but not for us. It had been about 4 weeks of this behavior. Weekend after weekend, he was restricting his calories to zero at home. Grant gave up eating in the morning with his para too. It was now just a ritual to make breakfast, but she would throw it away. In the afternoon, same thing. If she offered him food, it ended up all over the floor and them. He would dive to eat it off the ground. It got to the pt it was so gross, food was put away. Dinner time would come and go. We would offer, but he wouldn't touch it if we made it. Going out didn't help. We tried other locations. It wasn't the place, but it seemed to be us. And now school was done for the summer. Done. Who was going to feed my son? What would we do?

I called our home nurse so many times. She and I talk more than anyone in my life. She told me he had to hit 52 pounds. This would be less than 5% body fat. This is the number that worried her. We discussed all sorts of things. Maybe he will eat if he gets really hungry? Maybe we will find someone who can help? Maybe.

So someone came. She was outrageously expensive. But, she was well regarded in this world of behavioralism and she dropped everything to prioritize Grant. But, she didn't do anything like I had seen before. She sat there for a few hours and couldn't get him to eat. The spoon hovered in front of him and he wouldn't bite. It had been at least 24 hours since he supposably had ate at school. He wasn't going to crack and she was patient. She came out again. This time she targets his SIBS. She taught us what to do. A simple board to reinforce not hitting and a simple consequence schedule if he did. This included any other maladaptive behaviors that crept in like pulling our hair. She didn't know what to say about the food. If my memory serves me, he probably ate that weekend, confusing and delighting us. Confusing the issue of how to get him to eat more.

Another week went by. My PCA's attempted to implement her strategies, but before the 7 days were through everyone was stopping it. No one wanting to do it. His SIB levels were through the roof.

I can't truly express to you the nightmare we had all fallen into. I kept waiting for my 2 PCA's to quit. I was wondering if he was going to die. I don't think I can tell you how fucking awful June was, but I will try.

Grant's weight was plummeting. He would lay under 3 or so blankets and press the ipad to his face. He was no longer using his hands to change his youtube videos. I think he didn't have the calories. No matter what we did with him, he didn't want to participate. Last summer he swung all day. I think this summer he went out twice.

He was wearing underwear, but he would just urinate on himself rather than get up. He asked for food non-stop. I mean, at nauseum. He would cry and scream in what I assume was pain. He wanted to be massaged non-stop. If he ate, he would lay on the ground. He would only accept calories if I straddled him, while someone put their hands on his cheeks. He had become a 2-1 person. I couldn't leave my PCA's alone with him. They couldn't feed him. He wouldn't stop asking for food. It was depressing, it was hard. I cried every day. I called specialists as I could. I had no idea what to do. She said 52 pounds.

I was becoming the anorexic for him, mentally speaking that is. I would count his calories in my head. Justifying that a day on 200 or 300 calories was still something. Calories in. Calories...

As I watched him closely and tried to find creative ways out of this, I started putting the weight on for him. I would eat what he wouldn't. I would eat for him because he enjoyed watching others eat. But, then eventually I started to see things on the internet that were scaring me. Information about what happens to the body as you starve yourself. Whether it's for whatever reason, it's not ok. Skipping sleep is a bad idea. Skipping food and drink is unacceptable. He was entering aneroxia fog, but I didn't have a name for it back then.

And that's the thing, he doesn't have anorexia. But, I didn't have a name for it then.