Self-Injury: The beginning

See that chin. I thought that was bad back then. I didn't know at that time that it could get worse.

I think he is the most beautiful boy in the world. His little glasses, that are simply practical, made him look so darn adorable when he was a toddler. He's been wearing them since he was 2.

There was a time I stopped taking pictures of him. This photoshoot, on my deck, was...ya know, well, it's just pictures of my son. But, it was so much more in my mind. "Am I going to capture this moment"?, I ask myself. Do I want to remember how hard he hit himself? For a chunk of time, the answer was "no".

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When I dig up toddler videos of Grant, I find signs of something to come. This little head nod. It's subtle. It's nothing big. It looks a gentle jerk. His head lowers a bit. Like when you say yes, but he wasn't saying anything. Not 1, but 2 specialists pointed it out at the time. They noted it carefully to me. They warned me. I just didn't say what I should have at that time, "why are you pointing this out?"

I think Grant was about 5 or 6 when his first serious round of self injury began (SIBS are what we call this for short). We worked closely with the program he was attending at the time (all day, every day ABA therapy). We expressed a serious need and help to them, but I didn’t feel heard. In fact, I was hurt and confused a few days before Christmas (I believe) 2012. I received a phone call from the clinical supervisor. She hinted that I was the one creating the problem. I was asked to hire a 2nd behavioral company to come to my home. I promptly called the owner of the day therapy program and expressed my concerns. I asked them if they understood that they were asking me to take my money to someone new. She was aware of the situation and said they couldn’t help me at home. This is their only advice for his severe SIBS. I shrug my shoulders. I call around. I find a man with over 25 years of experience. We start a new chapter where I have to now open my home to professionals.

Most people, I realize, will have no idea what he feels like to hire someone to critique your parenting. I mean that is EXACTLY what this feels like. You negotiate what times you can meet after work. You typically have observations, discussions, and you try different strategies. A good behaviorist will not make you feel like you are under the microscope. They should feel like your partner. I didn't know that at the time. But, I did after meeting this person.

These are scary, dark days. I had never seen anyone be self-injurious, let alone be it my beautiful son. Grant is targeting his face, mostly his chin. I don’t want to dig up the numbers today for you, but the day program tracks his screams, his chin hits, and these shoulder head things he has done. The data shows that when one behavior goes down, another rises. There is never a point where it’s all low. They explain there is not one function, but most likely 4 for his SIBS. We end up spending over $7K on this new provider/behaviorist. While he is an awesome person. Him and his associates help in some small ways, we never drill down to the heart of the matter. One day, the behaviorist and I sit and make a list. The pro’s and con’s of starting medication and/or starting restraint type devices. We decide to go with medication. He is such a little boy. I can’t believe I have to do this. I don’t know what else to do. We start working more closely with his developmental pediatrician. And when I mean closely, I mean, almost daily calls are made. ABA therapy feels like it has failed him and us.

I can’t list all of the med’s Grant has been on since that point. We lower them, increase them, extinguish one and try another. Once you agree to this medication road, it feels like it never ends. We have seen a handful of adolescents pysch’s. We actually get excused from our first dr. She is out of ideas. It’s time for us to move on.

At the same time, I am working with these 2 providers, I order a book called “Self Injury” and I read the authors names. I put 2 and 2 together and somehow and realize that I have met one of the authors in real life. I learn more about SIBS in the first 30 pages of this book than anything I have mustered up prior to this pt. I am enlightened, it feels like a new day.

I call the author. He is retired, but still sees people like me on special cases. He doesn’t cost much and he meets me in person for coffee after meeting my son. He gives me a 14 page report on what to do next. He is kind and helpful. I want to learn as much as I can from him. But, as much as I like him - to date, none of his suggestions have helped. It was not for nothing. But, it didn’t end up being as helpful as I had hoped.

Grant is pushing towards 7 now. I am losing faith in his current day programming. I am also reading more from adult autistics online. Some people write about how badly ABA therapy was and how they basically find it abuse. I get confused. Am I abusing him? I pull up to his program one afternoon in my car. He is outside with his lead therapist. He is on the grass, punching his own face non-stop, she is taking data, but offering no comfort or stopping it. She isn’t really doing what we discussed on a daily basis. I feel sick. How do I go to work every day knowing that tracking data is more important than his safety?

The problem back then, that I can be honest about today, is that I wanted to love this out of him. I wanted to hold him close and he wanted that too. If we just held him, it stopped. I didn’t have to listen to the horrible cracking of his lower jaw hitting his upper jaw. I didn’t know what to do. He was out of control. If I let go of him, he would just smash away. I am his mother. I didn't understand behaviorism at that time and I just thought I was doing what was right.

At night, is when it was particularly hard. Grant was removed from his crib early because of a crib recall, but developmentally he was nowhere near ready to be in a traditional bed. We had to use ourselves to keep him in bed and help him fall asleep (like a human fence). We don’t know what to do to keep him in the bed. But, that wasn’t the worst of it. As we laid there next to him, his arms were like 2 guns going off. Punching, punching, punching. If he was punching himself, he couldn’t sleep. So we had to hold his arms down. Literally holding him down. Not only to not escape his room, but simply so he could relax into slumber. There was no alternative. And it wasn’t that simple either. His head would start going. Back and forth, back and forth. If he couldn’t have his arms, then his head would shake like telling someone a nonverbal “no”. So we had to use our cheek and press it against his. Imagine a parent nearly laying on top of a child so the child could just sleep. I remember peeling myself slowly off of him after he would finally pass out so I could get some respite. I remember waiting for him to pass out because I still do this nearly every night. I remember sneaking out of his room like a burglar. And then it would start over in an hour later if he discovered you were not there. We used to take turns (Scott and myself). But, he got bigger and stronger. It started to become a game to him. At first, I could handle it, but I started to get hurt. I was worn out and sweating just trying to keep him in bed. I hit a proverbial wall and told my husband I was done. Now at 9, we both put him to bed. I am glad to tell you it is not nearly as hard as it was back then. But, it's no picnic today either.