Raising a child with autism has given us an up-close-and-personal look at many different types of behavior. Some behaviors come, some go, and some stay. There are as many varied behaviors as there are adjectives I’d use to describe them. Confusing, creative, endearing, maddening, funny, frightening, dangerous, and exhausting are definitely in the top 10.
When Amanda was young, it was easier to prevent and control her challenging behaviors. We controlled her environments as much as possible, but we mostly controlled her behavior by picking her up and removing her from whatever situation was a problem. If she resisted a medical procedure, we held her down. If she resisted going somewhere, we picked her up and took her anyway. At times, I carried a 9-year-old. That should have been a red flag.
Amanda was able to join in on most family activities. She went to church with us, out to eat, on vacation, camping, and almost anywhere we took our other daughters. She enjoyed most of those, but all activities required accommodations and planning on our part. For example, we always sat in the front row at church, because she did better if people were not in front of her. In different situations and places, we learned what worked and thought we had a reasonable system.
We were not only short-sighted; we were wrong.
As Amanda grew, the number, type, and severity of her behaviors grew. Our skills to prevent or stop those behaviors did not keep up with that growth. By the age of 16, she was stronger and faster than me. And she knew it. All the physical restraining and controlling we had done in her younger years backfired on us big time.
At age 22, she became legally blind from an unexpected and rare degenerative eye disease. Although she still has some vision, she had such extreme light sensitivity that she kept her eyes tightly shut, rendering herself functionally blind.
As a person who also has profound hearing loss, all of Amanda’s communication was visual. Now, she had lost that. Her frustration soared as did her behaviors. She slammed her head against hard surfaces as many as 96 times in a 2-hour period. She put her head through a glass door. She refused to leave the house except to ride in the car. We lived in a hyper-vigilant state, and our world grew increasingly smaller.
Some of her behaviors were not dangerous, but compulsive. For instance, she would ask for a single bite of yogurt dozens of times an hour for most waking hours. She slept very little and had an unpredictable sleep schedule. She was a danger to herself, and we were in danger of losing our sanity. We had already lost our ability to step back and problem solve. We were terrified we were at the place where we could no longer keep her safe in our home. We were exhausted. We needed help.
In 2009, we began behavior support services. Cue the birds singing!
The behavior analyst studied the functions behind Amanda’s behaviors, because behavior is never random. It is communication or it serves a purpose of some kind to the person. Once we learned about those functions, we worked to make a plan to help give Amanda what she needed and was looking for. Amazingly, she did not want or need to be physically controlled.
We learned her 1,000 bites of yogurt a day was her way of trying to start a conversation with us. She wanted to interact! It was one of the few things she knew how to communicate to us, so she kept using it. The modification didn’t take that away, but when she requested a bite of yogurt, she got the yogurt and we offered her an activity too. Now she requests an activity, and her bites of yogurt are rare.
We learned she was bored and had no way to tell anyone what she might like or want to do. We put a communication system into place with 3D symbols representing items or activities. If Amanda wants to eat, she hands us a paper plate; if she wants a drink, she hands us a cup.
In order to convince her that this communication could work, we had to start with symbols that were very rewarding to Amanda. At first, we had to honor each request. That meant many, many trips a day to get Krispy Kreme donuts. At that point in our lives, I could tell you exactly what time they opened and when they closed.
We were able to back off on the trips for donuts when Amanda began to show signs of generalizing the communication system by using other symbols regularly and appropriately. Currently, she doesn’t ask for a trip every day; when she does, we have a limit of just one trip a day.
Behavior tracking is one crucial element of the plan. We record the time a behavior happened, what the behavior was, what else was happening just before the behavior, and our response to it. The paperwork can be tedious, but useful.
After months of recording, we saw a pattern. Amanda’s head banging greatly increased about 40 minutes after her morning and evening doses of medicine. We researched the side effects on her medications and discovered that one was known to cause severe headaches. We asked her doctor to take her off that drug. The head banging decreased from hundreds of times a day to only a few. Amanda was trying to tell us her head hurt! Ironically, that drug had been prescribed to help control her self-harming behaviors.
An additional and unexpected benefit of discontinuing that same medication was that Amanda’s light sensitivity decreased a lot. We thought it was connected to her degenerative eye disease, but it turns out that the drug made her light sensitivity worse. Amanda is still light sensitive, but she is able to open her eyes now and use the sight she does have.
These are just a few examples of the many things we learned and the solutions we found. Most importantly, we learned how to listen to Amanda. We learned to respond, not react. We learned how not to reinforce behaviors we don’t want and how to reinforce the ones we do want to see. We learned to respect her communication and let her “NO” mean no.
She will always need a behavior plan, and we haven’t been able to reduce all of her challenging behaviors to the same degree. For example, her sleeping issues are mainly connected to her post-concussive syndrome. Fortunately, she can fall asleep easier now that we have helped her reduce her overall anxiety by giving her more control and choices.
It wasn’t easy – we had to develop a complete new mindset. Truthfully, our behavior has been modified the most. We had to be diligent to follow the plan, no matter how tired we were or how inconvenient it was at that moment. If Amanda handed me her symbol for Krispy Kreme at 11 p.m., then a donut run it was! While the behavior tracking sometimes felt tedious and relentless, the pay off? Priceless.
Learn from a mom about the emotions of having to start a young child on medication.
Palliative care is about making the most out of life while supporting complex patients and their family. I am so glad we found them.