Setbacks and Stepping Stones

 

With autism, progress doesn’t always mean moving forward. Sometimes setbacks occur that teach us so that we are ready for the stepping stones that lead us toward our goals. In January, Alex began attending a day program for adults with disabilities where he has been working one-on-one with a staff person to learn computer skills. Because he has had behavioral issues in the past, they requested that Ed stay in case any problems arose. Although Alex has made significant improvements in his behavior, we understood their concerns and were willing to do whatever was needed to make sure Alex was successful. Frankly, we were unsure how he would adapt to the new environment, but he made us proud by handling himself very well. Once they were confident that he could behave himself, they decided that Ed could simply drop him off and pick him up at the program and did not need to stay for the entire session. Moreover, they increased his sessions from once a week to twice a week. Despite various situations that in the past would have thrown Alex for a loop, such as a broken computer printer, a fire drill, changes in the staff who worked with him, the internet being down, etc., he never seemed to get upset and rolled with whatever came his way there.

In fact, he seemed to handle situations so well that they suggested that he stay for lunch after his computer classes so that he could socialize with the other clients, who are about his age. When this new schedule began last month, we were again uncertain as to how Alex would adapt, but he enjoyed being with other people and seemed to be following the rules. All of the feedback we were given indicated that he was doing very well, and we were delighted that he had the opportunity to learn computer skills and to interact with his peers.

While we thought everything was going amazingly well since we had only heard positive reports, we found out that they were not happy with him because he had been resetting the microwave oven. Because of his OCD, Alex needs for the world to be just so, which means that he always closes cabinet doors and drawers and that he needs for clocks to be accurate. Also, he believes that if a microwave is stopped midway through the cooking cycle, it should be cleared back to the original clock setting. Apparently, someone at the day program was stopping the microwave without clearing the cooking time, and Alex saw those flashing lights as an invitation for him to fix a problem. Clearly, he needs to respect other people’s property, but I’m sure he intended his actions to be helpful: someone forgot to reset the microwave, and he was happy to remedy the problem so that everyone could see the clock again. Moreover, we didn’t know he was doing this until they told his behavior therapist when she checked with them regarding his progress, and she relayed the information to us. Once we were alerted to the circumstances, we talked to Alex and told him that he was not to touch their microwave because it was not his. He seemed to understand, but he probably would need to be reminded since his need for clock accuracy is so strong.

In addition, we found out that he had been imitating other people’s voices, something he does when he likes a person. He truly does not intend to mock the person; in this case, he copies them because he admires them. Again, we reinforced with him that he cannot imitate people because it’s rude, and he seemed to understand. We also discovered that he had been invading other people’s personal space by standing too close to them or by trying to touch them, which we know he cannot do, especially since he is so big that he can appear threatening. Once again, we discussed this issue at length with him once we were aware of the problem, and Alex seemed to take this concern to heart.

A few weeks ago, after six months of good behavior, Alex became upset and grabbed his staff person, which was unacceptable, and they called Ed to come and get him immediately. Right away, Alex knew that he had handled the situation wrong and expressed remorse for his actions. Also, I discovered that he had thrush, the yeast overgrowth in his mouth that has plagued him repeatedly for more than three years and causes him to be extremely irritable, which probably caused him to become agitated. After much communication between their staff, Alex’s case manager, our behavior therapist, and us, they finally decided that Alex could continue but with some restrictions, including having Ed stay part of the time in case Alex had any issues. Again, we understood their concerns and complied with their requests, and we emphasized with Alex the need to behave himself.

Since then, he has apparently been following the rules, but he has also been a bit anxious, seemingly worried that he will make a mistake. In fact, he asks us after every session if he did anything bad because he truly wants to do a good job. Last week, the director told Ed that Alex had a bad morning, but when he asked Alex’s staff member what had happened, she indicated that he had been clearing the microwave again and dismissed it as rather minor. As teachers, Ed and I obviously understand the need for students to follow the rules, but we also value accurate and specific feedback. As parents, we will do everything in our power to make Alex the best that he can be, but we will also lovingly help him to do better when he falls short. Alex knows that he can always count on us, no matter what, and that support gives him the confidence to try again.

While I wish that Alex would always follow the rules and behave perfectly, realistically I know that he will make mistakes, and we will help him learn to do better the next time. Just as Alex is learning from these experiences, I am also learning valuable lessons that I hope will make me better as a person, parent, and teacher. Because I appreciate that Alex’s behavior therapist and music therapist always emphasize his strengths, even when noting his weaknesses, I know how important being positive is when I deal with my students. Moreover, Alex’s therapists move on after he makes a mistake, knowing that he will stumble at times, and they don’t dwell on what he did wrong, but instead praise how he recovered nicely afterward. Finally, the compassion and understanding that they show Alex and us as his parents, knowing that we are doing our best under the difficulties autism presents, strengthens and helps us move forward so that Alex can continue making progress. As the new school year approaches, I know what kind of teacher I want to be—one who knows that my students will stumble from time to time, but who is there with a helping hand to lead them to the next step, patiently encouraging them along the way and praising their efforts so that they want to keep learning and trying. Just as Alex continues to learn, I realize that I am still learning, too, making mistakes and making amends, thankful for all the lessons he teaches me along the way.

“Though they stumble, they will never fall, for the Lord holds them by the hand.” Psalm 37:24