It is a typical schoolday morning at our house. Rob is refusing to leave the house to go to school. Getting him dressed, fed, and ready to go is a battle. Getting him to go to the car and get in (or go out to the bus) is impossible. When he was little, he could be carried by force, but now that he is in third grade, he is too strong for me. Some days he goes without a problem; other days it is a battle; and we haven’t been able to figure out what makes the difference. As far as I can tell, he just doesn’t feel like going.
According to my previous posts, we should have already taken into account sensory issues, comprehension issues, communication issues. We are addressing his sensory needs on a regular basis, we are sure he understands what is expected (“we go to school every day, whether we feel like it or not”), and we think we are giving him the opportunity to communicate his needs and desires. Clearly he does not want to go. This could be due to a variety of factors. He may be anxious. He is probably tired because he didn’t sleep well (sleep issues are a constant problem).
Some things we do to make sure he understands what is expected:
- We keep a calendar that shows him which days are school days and which are holidays or weekends.
- We try to keep a regular routine, and checklist of what he is expected to do each morning.
- We narrate the process.
- We try not to get frustrated, because that makes him more resistant.
But despite all these things, there are days when he does not want to go. And he does not have the positive things at school that might motivate him. He does not have friends. He is not interested in most of the class activities. He doesn’t care about grades. I can understand why he would not want to go.
So we try to provide extra motivation, using what we call the carrot-and-stick approach:
- carrot: give him a reward for doing what he is asked to do
- stick: make non-compliance less desirable in some way
This, of course, is basic behavior management. We tried different behavioral approaches over the years. Most were successful to some extent, but then would break down, either because he outgrew them, or because we just were not organized enough. When he was preschool age, we used a token system (poker chips). If he did something we asked him to do, we put a chip in his bucket. We did not take chips out for non-compliance. At the end of the day he could trade his chips in for something he wanted: TV time, McDonald’s french fries, Pokemon cards. That was the easiest system for us. It was simple, concrete, and visual. We went back to this several times over the years.
In first grade, his teacher used a traffic-light feedback system. There were specific rules, and the lights showed how the child was doing. We found that it worked at home as well. We made up a system of specific rules: Do not hit or pinch. Ask for what you want. Do what you are told. Green light meant that he was complying. He had all his privileges: he could watch TV, play video games, play Pokemon. Yellow light meant that he had a warning. He had broken one of the rules, once. Red light meant that he was breaking more than one rule , or a rule multiple times. Red light status meant he could not watch TV, play video games, or play with his Pokemon cards. Red light status lasted for an hour, and then he could try again to move to green.
As he got older and we required more complex behaviors for him, the behavior plans got more complicated. We used checklists and point systems. However, these tended to break down because we weren’t good at maintaining them. We found complex behavior management systems to be exhausting and frustrating. My husband struggled with resentment because he felt that Rob should behave just because he was told to. We worried that we were raising a child that would not do anything unless he were rewarded for doing so. Our daughter felt resentment because we spent so much time and effort on his behavior, yet expected so much more from her. And we often got into power struggles with Rob. He was smart and tried to cheat or manipulate the system.
We struggled along on our own pretty much until Rob hit sixth grade. Then it seemed that nothing we did helped. He was aggressive, destructive, defiant, and nothing we did worked. We eventually had to send him to a residential treatment for five months. During that time, they got his behavior under control and worked with us to develop a behavior management system that we could sustain. We worked with a behavioral management specialist, and met with them monthly to assess progress and adjust the plan. That helped for a few years, until he hit puberty (more on that in a future post).
We felt like failures for having to send him to a residential program. We did family counseling, and there were times when I felt intense shame over my inability to be consistent with a behavior program. I found that issues I had with my growing-up years got in the way of my being effective. I grew up in an physically and emotionally abusive home, and so I was extremely uncomfortable with any expressions of anger. My husband grew up in a military family where the rule was instant, unquestioning obedience, and he still felt a great deal of anger and frustration that we could not get Rob to comply. He would lose his temper and yell at Rob, and then I would get upset, and we would argue. Although I’m sure this upset Rob, on another level he liked having the power to make us argue, and played us off each other. The counseling helped us become aware of some of these patterns, and make adjustments.
I wish I could tell you that we discovered a magic bullet. We did not. As he got older, money became the chief motivator. We used a points system which he could exchange for money at the end of the week. We focused on only a few behaviors at a time, because a comprehensive system was just too overwhelming for us.
Raising an autistic child is hard. I learned I should not be ashamed of being inadequate. I learned that we had to have help. So I recommend family counseling for every family with a special needs child. I recommend getting on-going help from an expert in behavior management. And all I can say is to not give up. We tried, we worked really hard. We failed a lot. We got up and tried again. Now that Rob is eighteen, he is doing so much better than we ever hoped. Our failures did not doom him to failure. Our hard work was not in vain. Neither will yours be, if you persevere.