Dental Care and Special Needs: One Journey

My son, Isaac, was diagnosed with autism at age 2 and a half. I started taking him to a pediatric dentist at age 3. By the time he was about age 6, the pediatric dentist could not handle him. The dentist suggested that I find a dental practice that was more suitable to Isaac’s needs.

We live in the Boston area, which is known to be a medical mecca. Surely, I could find something for him here. First I tried the famous Boston Children’s Hospital. Because of Isaac’s inability to cooperate, they suggested that we put him under anesthesia every two years in order to do dental work. Then I tried the very popular special needs Tufts Dental facility nearby. They also suggested the same. “We can work with some special needs individuals without using general anesthesia, but with someone like Isaac, this would be impossible.”

I finally found a neighborhood dentist whose practice focused on special needs. He was willing to work with my son. He would start out by doing some dental work under anesthesia and then he would work on getting Isaac to accept dental care. Isaac would need several visits a year. I decided that this was my best option.

This dentist put my son in a headlock to clean his teeth. This was brutal for me to witness. Isaac struggled to break free from the headlock. While tears flowed through my eyes, I assisted the dentist with restraining my son. This actually worked for a while. He got dental care and it wasn’t under anesthesia. However, my son was growing, and as time went on, the headlock and restraints did not work. We were not strong enough to hold him down. I called the Massachusetts Department of Developmental Services (DDS) and begged for help. They referred me to an agency that sent me Jennifer. At first Jennifer was willing to help us restrain Isaac. Finally she said “This isn’t working. Isaac is afraid, and we are just making matters worse.” What Jennifer said echoed what I felt from the first headlock, but I simply didn’t know what else to do. I am grateful that Jennifer finally said it.

I talked about my problem to my friend, Marsha, who is a dentist. I asked if she could help me, and she said that she would try. At the time I had some flexible “residential prevention” funding. I used this funding to pay for the many dental visits that we needed in order to make our plan work. My friend offered to do this for free, but I knew that this would be so time consuming that she needed to get paid. When Isaac finally went into residential services, I used SSI (Social Security Income) to pay for the additional dental visits.

Although I did have a consultant come in a couple a times to provide input, Marsha and I were basically on our own in terms of developing a behavior plan. I had experience teaching my son and running my son’s home programming. Marsha had experience getting many anxious patients to accept dental care, and she was also raising her own four children. We both had some good ideas about what to do. So there we were two strong headed mothers determined to get Isaac’s teeth cleaned!

Looking back on our experience, I will have to credit the actress, Julie Andrews, for much of our success. If it weren’t for Mary Poppins, I doubt that I would be writing this today.

At our first visit, Isaac recognized the office as a dental office and refused to go in. In order to get him to go in, we played Mary Poppins on the VCR/DVD Player. As he stepped in, Mary Poppins went on. As he stepped out, Mary Poppins went off. We did not force him to sit in the chair or open his mouth. We worked with him and Mary Poppins until he could walk into the office and sit in the chair on his own volition. Marsha did not work in his mouth until he was ready to sit by himself and open his mouth. No headlocks. No restraints. This took many months of Mary Poppins (and other Disney movies) going on and off. In addition to Mary Poppins, we paired reaching a target behavior with praise to the hilt. The whole effort was a matter of baby steps and grit.

When the time came for Marsha to use dental instruments, she felt that it was important that she fully explained what she was going to do. She thought that doing this would allay some of Isaac’s fear. I thought that he wouldn’t fully understand, but she insisted that this was the way to go. This turned out to be instrumental in getting Isaac to accept the care. It was not important whether or not he understood every word. It was important that he understood that she was trying to get him on board with the procedure rather than forcing him. He made his own choice. We also used pictures and social stories to try to explain.

We developed a routine of going to the dentist, and we went regularly and frequently. The first year we went to the dentist once a week, and we gradually tapered to once a month.

Isaac is now 26 years old and loves his dentist. Sometimes he asks to go and see her. I could never thank her enough for what she has done for us. Although we have been told many times that individuals with autism have a hard time generalizing, Isaac’s cooperation with all medical situations improved as a result of our work with Marsha. We still go to the dentist monthly and Isaac’s behavior is not perfect. But now, Isaac only has dental procedures under anesthesia if he has a cavity or something more complex. He would not be able to take Novocain or tolerate drilling. Marsha always says that Isaac is her most improved patient. I am proud of him and what he has accomplished. Part one of Irene’s article can be found here.

Irene Tanzman is the mother of an adult son diagnosed with autism. She is a healthcare program management and data analysis professional (originally published on LinkedIn,  September 1, 2014 , written permission granted to reprint article)