On Forgiveness and Food Reinforcers use with Autism

I've decided to combine two topics that I consider extremely important because in this case I personally can't seperate the two. I'd like to share my experience with food reinforcers and forgiveness. Forgiveness is not just something we need to give to other people. Sometimes forgiveness is something we need to give to ourselves. My number one rule when making decisions about autism is, "Make the best decision you can with the information you have at the time and never look back". I have found this rule to serve me well and be fairly easy to follow except when I discuss food reinforcers. Food reinforcers is the practice of using food, usually candy or high carbohydrate treats, to encourage someone to repeat a behavior. My middle son's education team used these reinforcers, in particular, gummmy bears, during his second grade school year. It seemed to be just the ticket! This was done with my complete blessing. He made wonderful progress and many of those students that assisted with this progress are still great encouragers for him today through social media, eighteen years later. He really turned a curve that year on his progress. All the later progress he has made has really been due to the hard work and dedication of the educational team and fellow students that worked with him that year.

Unfortunately, his yearly pediatric exam didn't happen until the end of that school year. At that time the pediatrician told me he had some major dental problems. This was a complete surprise since neither my husband or I have ever had a cavity and because we made sure our children brushed their teeth daily. Dental decay was not even on our radar. After a trip to the dentist, we found out he need $20,000 worth of dental work, which insurance would not cover. I was cautioned that his dental work could not be delayed as it was severe enough the infection would likely go to his heart if not done immediately. Every tooth in his mouth had either three or more cavities or was more than 50% decayed. My husband was slated to be laid off at the end of the month.

At this point the Mom guilt was pretty severe. How could I have not known this? Why did I authorize use of food reinforcers? His teachers were definitely not to blame. It was my responsibility to make sure the programs I authorized were appropriate. I had a truly hard time forgiving myself for a very long time, but if you hold onto the guilt then you can't allow for future growth. I had to let go of the guilt to be truly effective in making good decisions in the future. This was truly the a huge hurdle for me to overcome.

The problems with food reinforcers did not end with just switching his reinforcers. This was a major ordeal. The dentist absolutely refused to do the work in his office. He called the insurance company and told them that if he did this in the office they would then need to pay for counseling for himself (the dentist), myself (the mom), and my son (the patient). They would not budge. The work was done in the hospital, but we had to access of program for special needs children.

Now things became worse, I took him to the hospital to meet with the child life specialist, who helped prepare children for their hospital stay. She assured me that even though he would not have anything to do with her session everything would be fine. She said, they all drink the "giggle juice". After they drink the "giggle juice" they relax and everything is fine. This did not turn out to be true. He did not willing drink their "giggle juice" nor did he willing allow the antistetic. Since he was fighting them it took three antistetics. At this point, his heart stopped. After he was revived. The dental work was done.

Although this may seem to be an unusual case, I don't believe it is. I believe that most children who have autism are likely to fight in this situation. The problem wasn't a reaction to the antistetic. It was that he fought them. He did not have the necessary skills to understand what was expected of him or to actively participate by allowing the doctors to administer the antistetic. To me the solution here seems clear, the way to prevent this scenerio is to use other reinforcers. Children with autism frequently respond well to other things. In my son's case, we switched to hand stamps. He sometimes had stamps all the way up his arm by the time he came home at the end of the day, but it was just as effective.

While this may seem to be the end of the story, it is not. Every few years, he has needed major dental work due to some of the original work failing to be effective anymore, but the most difficult part has been the emotional toll. My son is having his wisdom teeth removed this week. He is truly scared. You see he remembers the whole incident up until his heart stopped. When we took him to the dentist to arrange the the removal, he was shaking and scared. They called me in to help calm him down. At one point, he burst out, "I'm having nightmares about people holding me down and putting a gas mask on me." Immediately, the doctor assured him that he did not use a gas mask. My son calmed some. He told the doctor our preacher had told him sometimes they gave people a pill if they were nervous. The doctor immediately prescribed a pill, which my son frequently checks to make sure I still have.

When you are making decisions you will make some mistakes. It's important to not only forgive those you may feel have faulted you, but more importantly yourself. If you don't let go of that guilt, your guilt can paralyze you ability to be effective or to deal with future consequences of the original decision. When those mistakes include authorizing a practice that can be harmful I feel it's important to share your experience with others, so they can learn from our mistakes

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