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.
P.S. Left Brain/Right Brain also has a post about autism and dentistry that leads you to an article by Darlene Oakley.
It’s interesting to compare your situation (in the US?) with our experiences of dentistry with autism-type issues in Australia. Our kids have autistic traits and above-average intelligence. One has consistent and universal sensory hypersensitivity, including an acutely sensitive throat and mouth, that has resulted in gagging during dental procedures and troubles when the child was too young to brush own teeth. I presume that retching during dental procedures would be highly dangerous. Added to this our child has had smell/flavour hypersensitivity that makes strongly smelling or flavoured medicines, mouthwashes or disnifectant smells intolerable. Where we live the government has provided free dental clinics to school-aged children. Cases that cannot be dealt with at these clinics go onto a long waiting list to go to a big state-of-the-art teaching clinic, or to a hospital for general anaesthetic. Free government dentistry is now imploding due to lack of staff.
We have found that at the school clinics one may find a clinic that absolutely reeks of disinfectant, and staff who are either untrained or uninterested in dealiing with the type of issues that our child had. Our child has had to go under general (not laughing gas, which has questions about it’s safety) for extractions at a hospital. For fillings and examinations a combination of two special interventions has worked most successfully at the state-of-the-art clinic; gum massage at the beginning of the procedure to desensitize and relax I guess, and dental dams I guess to prevent anything touching the back of the throat. The reek of disinfectant and strong-tasting mouthwashes that we enountered at the school dental clinic were apparently unecessary, because neither of these things were found at the modern teaching clinic. No special blankets were offered. Now I’m hoping our child will be old and experienced enough to cope with standard dentistry next dental procedure. Fingers crossed.
And another thing – I expect that baby teeth that won’t fall out should be very easy for a dentist to deal with. I don’t think they have any roots and they seem to come out without much bother. I don’t recall if such extractions required any anaesthetic.
Alex also has the sensitivities you described, which is part of the problem. Here it takes special permission to get the general anesthesia, so we have to try and fail using other techniques. And I did learn about the concerns about happy gas from another blogger. The dentist wasn’t aware of the issue until I brought it to her attention, so we’re getting Alex tested for the deficiencies (B12) that relate to the documented cases she was able to find. Results aren’t in yet.
We have similar cleaning opportunities through the school system, but it doesn’t go to regular denistry, just cleanings.
The baby tooth wasn’t too much of problem, because the root had been mostly absorbed, but it was still more than could have done without something for the pain and it still was a lot of fuss. And I did learn that baby teeth do start out with roots, but the body usually absorbs the root when the adult tooth comes out, which is why they get lose. Alex’s root was mostly absorbed, but the gum was still tight around the tooth.
I’m not surprised that you need to jump thru joops to get general anaesthesia. It’s no minor thing.
I try to avoid dentistry as much as possible, but I can say that in all of my life I’ve never been given laughing gas for dentistry, and have never seen or heard of another person that I know having had it during dentistry. They do use it for childbirth in Australian hospitals, but I don’t know if it is used by dentists in Australia.
Good luck and best wishes!
I’ve never had laughing gas either. However, I didn’t see dentists very often as a child, so it might be more common for children. My husband’s had laughing gas, but that’s partially because he is/was allergic to novacaine.
I agree anasthesia is no minor thing. There are always risks involved, though the risk is small. Alex has been under anesthesia before, and for him they need an anti-nausea medication, too. He has a very strong gag reflex and the anasthesia tends to make him feel nauseated. It’s certainly not something I want to do, but I don’t want his teeth rotting from lack of proper care and strong teeth don’t exactly run in our family.
Thank you for your well-wishes! I’m sure we’ll need them.