Sunday, July 7, 2013

Staying on Track

Many parents whose children have autism note that their children have an intense fascination with trains. When they are little, they often have great affection for the Thomas the Tank Engine cartoons, books, and toy trains, and when they are older, many of them memorize schedules for subway trains. This interest in trains often remains unclear, as many of these children cannot express why they favor certain things. When Alex was little, he enjoyed watching the Thomas the Tank Engine cartoons, and I wondered if the soothing voice of Mr. Conductor mesmerized him. Thanks to his uncle, Alex had a wonderful set of trains that featured Thomas and his friends. I often suspected that he especially liked them because they had numbers, which he holds dearly, on them. Perhaps some children appreciate that they line up orderly, a trait many children with autism find interesting. Lately, I’ve begun to think that Alex’s interest in the toy trains may be linked to his one-track mind.

Studies show that other psychological conditions often co-exist with autism, such as social anxiety disorder or obsessive-compulsive disorder, more commonly known as OCD. These so-called co-morbid conditions that frequently accompany autism may cause challenging behaviors in addition to the impaired language and social skills common in autism. When Alex was eleven years old, we first noticed that his OCD behaviors were becoming more intense and needed to be addressed. His primary obsession was the concept of time, and he would repeatedly ask us what time it was, even though he knew how to tell time. Even after we would repeatedly tell him what time it was, he compulsively would run frantically to a clock to check the time as though he needed visual as well as verbal confirmation. When we discussed this behavior with our family doctor, she understood our concerns and started him on a low dose of the SSRI medication Prozac to address his OCD behaviors. Within several days, we saw a great improvement in his behavior, as Alex no longer needed to ask us over and over what time it was; instead he would calmly check the clock once when he wanted to know what time it was. This came as a huge relief to us to see the calming effect the medication had upon his behavior.

Last year, his psychiatric nurse practitioner decided that Prozac had lost its ability to keep his OCD in check over time and switched him to another SSRI, Zoloft, which generally seems to keep him calm and manage his behavior well. However, when Alex becomes anxious, he will revert to asking the same questions over and over, which tests Ed’s and my patience to the limits. Most of the time, Ed and I are remarkably patient with Alex; however, patience is something we have developed though the years, as I don’t think either of us are naturally patient people. At least, I’m not. Nonetheless, in dealing with Alex’s sometimes challenging behaviors, we have learned that losing our patience with him can be akin to pouring gasoline on a fire. Besides, most of the time that he is trying our patience, we know that he really can’t help it.

Just as when he was younger, Alex focuses upon time and when things will happen. Even though he knows the routines we have created to ease his anxiety and have posted a daily schedule on the refrigerator for him to consult, he still constantly asks us questions about when lunch, dinner, bath time, and bedtime are. He also asks us throughout the day when we are going places and when he can weigh himself. Knowing that he needs us to answer these questions to ease his anxiety, we patiently answer him several times during the day. In case he is just making conversation, we will sometimes vary the discussion by turning around the question and asking him, “When IS bedtime?” Of course, he always knows the answer to the question because he has heard it thousands of times from us.

Although I would like to say that Ed and I always answer these repeated questions calmly and pleasantly, I have to admit that sometimes, being human, we just lose our patience with him. This week, Alex became overly excited about going places and kept asking us, “How ‘bout going places?” to the point I was ready to hand him keys to my car and tell him to go. However, since he can’t drive and I couldn’t find my keys, which added to his frustration and my own anxiety, this was not going to happen. As I frantically searched through my purse and even dumped the contents on the couch, only to discover later they were on the kitchen table, I finally yelled at him, “Shut up, Alex!” Because I rarely say anything that harsh to him, he was stunned for a moment and stopped questioning me. While I’m not proud of losing my temper with him, at least I had vented my frustration, and my outburst made him stop badgering me long enough to find my keys. Another day this week, Alex was anxious because I had gone to the eye doctor, and he kept asking Ed when I would be home. Even though Ed answered him several times, Alex was not satisfied, and he continued asking him again and again. Finally Ed said to him pleadingly yet more politely than I had earlier in the week (or so I’m told), “Alex, please be quiet!” Fortunately, our annoyance did not intensify Alex’s agitation; in fact, he usually seems amused by our rare outbursts, which makes me wonder whether he provokes us just to get a reaction.

While I’d like to always remain as calm and collected as Mr. Conductor from the Thomas tales, sometimes I find myself “cross” like the tank engines of the stories. In fact, at times our life with autism could use Ozzy Osborne’s “Crazy Train,” with its lyrics, “Crazy, I just cannot bear I’m living with something that just isn’t fair,” as our theme song. Nonetheless, Ed and I continue to keep the train on schedule, as Alex keeps it on his comfortable track, always checking the time at regular intervals, chugging along until we reach our destination of healing. All aboard!

“We also pray that you will be strengthened with all His glorious power so you will have all the endurance and patience you need. May you be filled with joy, always thanking the Father. He has enabled you to share in the inheritance that belongs to his people, who live in the light.”  Colossians 1:11-12

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