The last week has been a complete roller coaster for Mr. Boo. To spare his dignity and keep his privacy, I will not go into the gory details, but life has been rough. Basically, the cannabis is wonderful for helping him sleep and preventing seizures, but can not take the place of a mood stabilizer. We spent the summer weaning him off the mood stabilizer that he has been on since age four. When that was out of his system, we started the cannabis, hoping it would take over the job. I was asking too much of our dear plant friend, and Mr. Boo went off the rails. It was like having a two year old in a sixteen year old body. He had no impulse control, could not follow simple directions and was completely driven by whatever thought happened to flit across his mind. In short, he was miserable and the rest of the family was not better. Last Thursday we had an emergency medical meeting with his nurse who has followed him for the last six years. She has seen us through all of his highs and lows. She was clearly alarmed and insisted that he go back on the mood stabilizer immediately. Robert and I agreed.
That was three days ago. Friday was a really rough day. Boo Bear was out of control and self harming. It took two fully grown adults to handle him and I sent Mouse to a friend’s house for the weekend just to get her out of the fray. She went gladly. It took him a very long time to go to sleep on Friday night. I could hear him bouncing on his bed and throwing himself against the walls. He eventually went to sleep around midnight and slept for about eight hours. Saturday, when he woke up, it looked like the storm had broken. He was still “on the hairy edge” as Robert would say, but he was not self harming, he was eating okay, and he was able to follow simple directions. Saturday night, he made meaningful eye contact with me for the first time in over two weeks and smiled. That was when I knew my boy was coming back to me.
Like many parents, when Boo Bear was first diagnosed, I was looking for a magic bullet, I was looking for a cure. Fourteen years later, I know there is no such thing, and I don’t believe autism should or can be cured. It is not faulty wiring, it is a different operating system. Boo does not need to be cured because Boo is not sick. He just has a different neurology. But, when the chance to try cannabis came by, I grabbed at it, thinking it could be the thing that really made a difference. I expected too much of it. I am not blaming the weed at all, I think it is great stuff. It helps him sleep and if wards off the seizures. My mistake was in asking it to be a mood stabilizer. It can’t do that. Boo is my son and has my genes. I have been on a mood stabilizer for over a decade and know full well that I do not function as I should off of it. Okay, let’s face it. Without the right chemicals in my system, I am a hot mess. So is my son. Lesson learned. .
So, it has been a wild few weeks that neither Boo nor I care to repeat. I am so incredibly grateful for his PCAs, his teacher, and all of those who helped him weather this storm. I hope that brighter days are coming. I still believe that cannabis is a wonderful plant and should be readily available to all who need it, but it does not stabilize moods for my son. It helps him sleep, it keeps him from having seizures and for that I am highly grateful. As for the rest of his symptoms, we will have to let the mood stabilizer take care of them. The scary part is there are no long term studies on what mood stabilizers can do to a growing child. None. All I can do is give him the help that he needs right now and hope that it is not going to harm him in the long run. I don’t know what life will look like in ten or twenty years, but I have to make life not just tolerable, but enjoyable, for my son today.
Harriet's Hedgehogs and Autism Advocacy 