We had been getting a lot of feedback about Charlie’s behavior being spacey and him getting sleepy towards the afternoon. First, from his former preschool teacher, who took him on an outing over spring break. Then a couple questions from staff at school who work with him gently asking if anything had changed that they should know about because he seemed so sleepy. Finally, a few weeks ago his communication notebook came home with a very sweet note from his aide, who rarely writes in it, stating he was just very concerned about Charlie because of the sleepiness.
We had noticed it a couple times on the weekends. I had just thought maybe he was feeling sick and was falling asleep. We honestly don’t have much idea what it looks like when he is sick, since he often shows no signs of it. I also suspected it had something to do with the massive growth spurt he has been going through, which I can recognize because of the massive amounts of proteins he wants to eat – two hamburgers and a bowl of yogurt for dinner, kind of stuff.
But, with all this feedback I figured we needed to consult his doctors about his medication. He currently takes 1 1/2 mg a day of a blood pressure medication to help him feel calm and less impulsive. He started on this medication a year and a half ago at 1/2 mg per day with incredible results. When things fell apart at the beginning of the school year we increased it to current dosage, though I always wondered about it since it had no noticeable effect at the time and the turn around in his behavior this year has all been due to changes made by the school to better accommodate him.
So, I will admit I was happy to have a reason to try to drop his medication back. We consulted his developmental pediatrician, psychiatrist, and pediatrician all of whom said the medication was not likely the cause of the sleepiness, but since he was doing well we were free to drop him back if we wanted to try it.
I really wanted to try it. Charlie was very anxious about trying it.
When we first started this med with Charlie he was just a little over 4 years old. He was young enough he did not question why he was suddenly getting to eat a scoop of ice cream, with crushed white powder on top, with his breakfast every morning. The difference in him was subtle. But, you could see it if you were watching closely. He no longer had that look like he wanted to crawl out of his own skin because the sensations around him were so intense.
The nurse was very clear with me that I was not to tell him he was on it or I would spend a lot of time in power struggles with him refusing to take it if he was ever mad at me. We figured she had a lot more experience with this than we did, so, initially we took her advice. But, it never sat right with us. It felt very wrong not to be honest. We could not see how it benefited him not to understand why he was feeling the changes in his body. After all, we were trying to help him make more connections to his feelings and sensations, not be further alienated from what was happening to him.
So, we told him about it, in all the vast detail that he wanted. We told him of what we saw it doing for him, what the risks were for him if he did refuse to take it regularly, we even told him why we hadn’t told him until now and apologized for leaving him out of the loop. It flies in the face of so much parenting advice, I still feel a twinge of guilt typing it. I can hear a parenting expert somewhere groaning about parents relieving their own guilt by burdening their kids with too much adult responsibility.
These people don’t know Charlie. They don’t know that he is already anxious and confused about the world much of the time. They don’t know that knowledge and a say in things at a level beyond what most kids should have are the best ways for him combat his anxiety.
All of which brings me back to our present. We lowered his medication to 1 mg per day. We let him know we were going to do this and why we thought it was time. He was very anxious about it. He kept telling us he was worried about not feeling calm anymore. We kept reminding him that it was not the medication that helped him calm down at school it was him using his tools and the school changing the way they were handling things for him.
The first day that we lowered his meds he did something I can’t remember and I told him firmly and calmly I was very disappointed in his choice. A few minutes later I walk into the room where he was and found himself pounding himself in the forehead. Over the next few days he increasingly began doing this whenever he was frustrated with himself, ramming his head into (soft) things, biting his forearm, smacking his forehead. The school states since we have dropped the dose of his meds the sleepiness is gone, he has been even more social with other kids than previously, and they have not seen any behaviors of self harm. In fact, they wondered if he isn’t imitating some of the kids he sees when he goes into the self contained class in the morning to use the sensory equipment.
I have alternately tried to hold and comfort, use deep pressure touching, ignore, and discuss the new self harming behaviors with Charlie but all of it is met with him telling me that he can’t feel calm since we changed his medication. I remind him of all the work he has done that has nothing to do with medication and that he is still on the medication at twice the dose he initially took to feel calm last year.
The pediatrician has told us, of course, that we have created a placebo effect, by informing him of the change. Maybe so. It still makes no sense to lie to him to me. He is in the end our most reliable reported to the way his body feels, even if he can’t always figure it out.