Alex is our most complicated child. The symptoms resulting from his autism are the most significant of our three children. He’s nine years old and still hasn’t found an effective means of communicating consistently. He rarely attempts verbal communication. His sensory needs are difficult to meet, because he experiences a complicated mix of hyper- and hypo-sensitivity that seem to fluctuate without notice or apparent cause. The many trained professionals over the years have made little progress in deciphering the mixed signals we get. We don’t yet know how to help Alex interpret his environment consistently, which frustrates all of us.
Another ailment which is distinctly Alex’s (of my three boys) is something I don’t have a good name for. Basically, when his adult teeth grow in his baby teeth have this nasty habit of not coming loose and falling out. The adult tooth and the baby tooth compete for space where only one tooth should be. It creates a double row of teeth in one spot that pushes both teeth out of ailment and affects the surrounding teeth. He also has a very, very sensitive mouth. When we first started brushing his teeth, he would occasionally gag to the point of throwing up. Since then he’s learned to control his reactions. When he cannot tolerate having his teeth brushed he just clamps down his teeth and lips so the toothbrush can’t get in. If we catch him at just the right frame of mind and level of sensory management, we can occasionally get a tooth brush in his mouth and clean his teeth. But, it’s not enough and he already shows signs of cavities.
Due to these complications, taking Alex to the dentist seems very inhumane. To make the experience less traumatic, we go up to the dental clinic in the Children’s Hospital in Milwaukee. They have a well-trained staff and special equipment housed in a seemingly ideal setting. We take Alex into a private room with subdued lighting (except for the dentist’s lamp). They have a hug blanket, which is a form of restraint intended to help keep him still and apply pressure that helps keep him calm. But then we have to get the wedge in his mouth so the dentist can poke around in there. The hug blanket isn’t enough, so on comes the happy gas (which isn’t available at the local dentist’s office).
Last time we took too long turning on the happy gas and Alex experienced such a severe reaction to the cleaning process that he threw up. After that, a lot of happy gas was used. Alex fell asleep or a state of near sleep, which allowed the dentist to x-ray his teeth (revealing the near cavities) and finish some of the cleaning. Even in this state, Alex was uncooperative. Furthermore, I was concerned that he’d had too much of the gas. He lolled a great deal and lay down in the car on the way home. It’s an hour and a half to two hour drive back to our house. I was alone with Alex and as much as I would have liked to watch him, I had to keep my eyes on the road. I felt anxious for his well-being all the way home, and would reach my arm behind me to touch him and feel the rise and fall of his shallow breaths. He was out of it and upset for the rest of the day.
After seeing how traumatic the experience was for Alex, the dentist recommended putting him under general anesthesia in order to perform all his dental care needs at once. This is a procedure the dental clinic is able to do, but getting MA approval is difficult. Before we can get that approval we have another regular visit to see if just maybe it’ll go more smoothly this time. It’s a week away and I’m not looking forward to it. Luckily this time I will be picking my mother up at the airport on the way back, so I’ll have another set of eyes to watch Alex.
The question I ask myself is: What would be the most humane way to get Alex the dental care he needs? I don’t like restraints, I don’t like doping him up with “happy gas” (which, btw, doesn’t make him at all happy), and I don’t like the idea of putting him under. Yet, without the restraints and the happy gas, dental care would be even more traumatic for Alex. And putting him under may be the least traumatic alternative. If teeth problems didn’t cause so much pain (as I know from my own mouth and through observing others), then I would probably say we should just forget the whole thing. But cavities are painful. Untreated cavities can lead to cysts, which are even more painful. And, while I cannot be sure, I cannot imagine that having two teeth where there should only be one would be all that comfortable. I especially cannot imagine that, since his aggressive behavior started right around the time the first baby tooth refused to come out. It might be coincidence, but he might be in constant pain or maybe just discomfort. That would certainly explain his irritability. But so would the general frustration of being unable to consistently communicate in a manner that is understood by others.
The most difficult thing for me is the ignorance. I don’t know the best thing to do for my child. If I knew, but was unable to do it, I could at least plan and strategize how to achieve my goals. But, not knowing leaves so few options. At this point, I can only make the best choice possible – using both my head and my heart to see which way to go – and hope Alex can forgive me if I’m wrong. As a parent, there is just so much of that. We second-guess ourselves, because some of the choices we make are just wrong. But we never have all the information; we never know all the consequences; and we cannot see inside our children’s minds or ask their future selves to know what they would choose if they were able. We must do the best we can and remember to say “I’m sorry” when we’re wrong.