Dealing with Change

A common characteristic used to describe people with autism is that they possess an insistence on sameness and a resistance to change. In fact, if one Googles “resistance to change autism” (as I did out of curiosity), over one million results can be found. As I have mentioned in previous blog entries, Alex is remarkably flexible about change and spontaneity. While he enjoys the predictability of some routines, he is also willing to try new things, even on the spur of the moment. However, I, who am not on the autism spectrum, resist change mightily and need time to adjust and plan before I can jump into something new. This week I was reminded of the difference between Alex and me in this respect.

For the past year, Alex has been working with a behavioral therapist who comes to our house each week for an hour. Through a variety of activities, the therapist addresses Alex’s issues, such as his anxiety and impulse control, and also works with him on social skills that autism impairs, such as respecting personal space and making conversation. We have been pleased with the progress we have seen Alex make as he has learned some calming techniques, self-control, and interpersonal skills. Moreover, he looks forward to these weekly sessions and considers his therapist his friend.

When we began behavioral therapy a year ago, he was first assigned a therapist who interacted quite well with him. However, in March, we found out she was moving out of state because her husband had taken a new job. She assured us that she would help Alex make the transition smoothly by bringing his new therapist to shadow a few of their sessions so that he could meet her and so that she could learn the routines they had established. As promised, the transition period gave Alex and his new therapist time to get to know one another and adjust nicely before she took over the therapy sessions on her own.

Although I was a bit concerned about how Alex would adapt to the new therapist, he clearly embraced the change immediately and eagerly looked forward to working with her. Her kindness, enthusiasm, and humor endeared her to him and us right away, and we felt blessed that she had been chosen to work with him. In fact, I commented that she was a gift from God because she had come to us all the way from Turkey. Recently, we learned that she had come to the United States to get her master’s degree and had planned to return to her home country, but she met the man who was to become her husband, an American from this area, and decided to complete her doctoral degree and live here permanently. For all those things to fall into place so that she could work with Alex, a divine plan had to be in order.

Listening to their therapy sessions from the next room, I not only appreciated that she made Alex accountable for his behavior and set reasonable expectations for him, but that she also praised him freely, often telling him in her delightful Turkish accent, “Alex, you are so smart and funny.” Anyone who is kind to Alex holds a special place in my heart, after all. When she took a trip back to Turkey to visit her family this summer, she excitedly told him about her experience of seeing turtles coming from the Mediterranean Sea to lay their eggs in the sand, knowing that Alex has a special interest in turtles. She even brought him a souvenir from this trip, a small realistic-looking turtle that she said made her think of him while she was on vacation. Of course, he was pleased that she brought him a gift, but he was even more pleased to see her after she returned from her trip.

This week, we found out that Alex’s beloved therapist has been promoted to a supervisory position and will only be working with him for a few more weeks to help him transition to a new therapist. I have no doubt that my face clearly registered the deep disappointment I felt when she told me that she would be no longer be working with Alex once she begins her new job. While I’m pleased that her excellence has been rewarded with a promotion and know that she will do a wonderful job in that capacity, I’m sad to lose her as Alex’s therapist and will miss her weekly visits.

Upon meeting his new therapist, who will be observing sessions during the transition stage, Alex seemed quite receptive to her, smiling at her often and asking her his usual litany of questions to learn more about her, including how tall she is and how many teeth she has. Apparently his current therapist had prepared her for this interrogation, as she laughed and willingly provided Alex the statistics that he needs to quantify her in his mathematical mind. While I’m mourning the loss of his current therapist, Alex is looking forward to getting to know someone new, even though I’m sure he will miss seeing his old friend, too. As we prepare for another change, I remember that God knows what Alex needs even more than I think I do, and I’m certain that He has allowed this change of therapists for a good reason. With that in mind and with Alex’s example of flexibility in spite of his autism, I look forward to what his new therapist will do to help him learn and grow to become the best that he can be.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

Vision

Because I am terribly nearsighted, I have worn glasses or contact lenses since I was eight years old. Although Ed’s vision is much better than mine, he has worn glasses since he was a teenager. Fortunately, Alex has always had more acute vision than either one of us, spotting small details at distances and showing that he apparently did not inherit poor eyesight from us. For this reason, we have not felt the need to take him to the eye doctor yearly. We would check his eyesight informally by holding up fingers to count or print to read and felt satisfied that he could see well.

When Alex was five years old, our family optometrist referred us to a developmental optometrist who specialized in visual therapy. This eye doctor diagnosed Alex as being slightly farsighted, which he assured us was typical for children that age, and as having convergence disorder, meaning his eyes did not track together properly. He recommended glasses with prism lenses to help his eyes work together better and a little bit of magnification to help him read or do close work more easily. In addition, he suggested having the lenses tinted slightly pink (the proverbial “rose-tinted glasses”) to cut down glare and put less strain on his eyes. After selecting the most durable frames we could find, we ordered a pair of these glasses for Alex, who happily wore them thinking that he looked like beloved cartoon character Arthur. Besides wearing the glasses, the developmental optometrist had Alex doing eye exercises on a weekly basis at his office and on a daily basis at home. Within a few weeks, we noticed several big improvements as Alex’s balance seemed much better, allowing him to walk up and down stairs and curbs more easily. Also, he stopped tipping his head to look at things. Pleased with Alex’s progress, the eye doctor felt that the glasses and eye therapy had achieved what he had wanted them to do, and he believed that Alex no longer needed the glasses or the eye exercises. We were amazed by how rapidly this therapy worked and delighted with the results. I put away Alex’s little glasses, which I recently rediscovered in our linen closet a few weeks ago.

This summer, Ed and I went for our annual eye exams and found that both of us needed new glasses, and I also needed a new pair of contact lenses. Apparently, Alex felt left out of this routine, and he kept asking to go to the eye doctor. Unsure of how well he could cooperate with the exam and feeling fairly certain his eyes were fine, we kept delaying making an appointment. Finally, I decided taking him to the eye doctor was easier than listening to him nag me, and I made an appointment for him this past Monday. Thankfully, the staff was very understanding of his sensory issues, and he was quite cooperative about doing the tasks they asked of him. The optometrist explained to Alex everything he was going to do, which seemed to reassure him and allowed him to get through the appointment smoothly. As the eye doctor had Alex read aloud the letters on the eye chart, Alex easily breezed through the first several lines. However, when he got to the smaller print, he suddenly stopped. When the optometrist asked him if he could read that line, Alex told him no. Since Alex’s eyesight has always been perfect, I thought at first Alex was just being uncooperative, but he didn’t really seem like he was being difficult. After the eye doctor placed some corrective lenses in front of him, Alex began reading the small print aloud, almost excitedly that he could now see the letters he could not see before.

The optometrist’s diagnosis was that Alex’s eyes are very healthy and his vision is good at 20/30. However, he felt that Alex could benefit from wearing glasses to improve his distance vision. After his eye exam, we helped Alex pick out a pair of frames (durable, like the ones he wore at age five—even the same brand), but he seemed rather uninterested in the choices and trusted us to make the final decision. Since his eyes tend to be light sensitive, we also opted for the transition lenses that darken in bright light, allowing his glasses to also double as sunglasses, which he always wears outside. The optician took all the needed measurements and told us that the glasses would be ready in about ten days. We wondered how much Alex would pester us in that time about when he would get his new glasses.

Fortunately, Alex waited patiently for his glasses to arrive, and we were surprised that they were ready to be picked up on Friday. Once again, he handled this experience well, calmly cooperating as the optician adjusted the glasses for him, and he was content to wear them. As we drove various places over the next couple of days, he seemed to enjoy looking out the windows more and making comments on things he spotted with his improved vision. He appears to have adapted well to wearing them, even asking, “Where are my glasses?” upon awakening the first morning after he got them. While we wish his perfect eyesight had continued, we’re pleased that he had a good experience at the optometrist’s office, he has a positive attitude about wearing glasses, and his vision can be easily corrected. Once again, Alex has shown us his remarkable flexibility, despite the tendency for people with autism to dislike change, as well as his tendency to see new experiences as adventures and not something to be feared. While we often worry that he may not adapt to situations, he thankfully proves us wrong, and we are grateful that he does.

“At that very time, Jesus cured many people of their diseases, illnesses, and evil spirits, and He restored sight to many who were blind.” Luke 7:21

What I'm Doing on My Summer Vacation

Yesterday I went for my annual mammogram. As any woman knows who has been through this ritual, this test involves the emotional aspect of putting aside modesty to allow our breasts to be x-rayed along with the physical aspect of having them and our collarbones smashed in machinery to get the best image. Nonetheless, we go through this test to make certain we are healthy or, God forbid, to catch cancer in early stages. As an autism mom, I have to be healthy because my child, probably even more than others, needs me to be healthy to take care of him, even at age 21. I had to remember this yesterday as I endured rather insulting comments regarding my profession as an English teacher from the technician who was doing my mammogram, essentially telling me that teachers are bossy, kids don’t like English, and grammar is boring. Wisely, I knew not to waste time trying to convince her otherwise; raising a child with autism has made me less sensitive to criticism and smart enough not to waste time on those who do not understand. The comment that hit me hardest, however, was when she remarked how nice it must be to have my summer off. She went on to say that when children are smaller, the teacher mom can spend the summer having fun with them, and when the children are older, the teacher mom can relax and do projects around the house. I didn’t bother to mention that my son has autism, nor did I try to explain life with autism to her; she wouldn’t have understood anyway.

This week, like many weeks, found me making an assortment of phone calls for Alex, trying to get appointments arranged and checking on various things he needs. For example, on Monday I had to call the pharmacist about one of his medications that seems to be on a different refill schedule than his other medications. Thankfully, she is very helpful and pleasant, and she went back through the records to find the original prescription, confirming that I would need to call his psychiatric nurse practitioner’s office to have her authorize a refill. When I called her office, I also set up an appointment for next month for his six-months check-up. After doing that, I remembered that we already had an appointment scheduled that afternoon with the case manager who oversees his state disability funding and his behavior therapist to work on his annual report for the state to continue services. I called the office again, rescheduled his appointment for the morning instead of the afternoon, thinking that would create a busy, yet workable day.

On Tuesday, his behavioral therapist came for her weekly session, and as usual, I flew around the house making sure it looked presentable for her visit. In addition, I wrote his weekly report for her, updating her on behavioral issues to keep her apprised of his progress and any issues she needs to address with him.  On Wednesday, we took him to the dentist, which is something Alex actually enjoys “one hundred percent,” largely because his dental hygienist is wonderfully sweet and patient with him. Also, we have been blessed that Alex has never had any cavities or any other dental issues, so his visits to the dentist have just involved having his teeth cleaned and checked. Because of his anxiety issues, we hadn’t taken him to the dentist for over a year. Unfortunately, they discovered that he has some cavities in his back teeth that will need to be fixed, and the dentist wants to do this under general anesthesia in the hospital because of Alex’s anxiety and sensory issues. Although we would rather Alex didn’t need to have any work done, we agree with the dentist that this is the best way to handle the situation to avoid upsetting him.

On Wednesday, I received an e-mail from the intake coordinator from the agency where we are on a waiting list trying to get Alex into a day program. She was notifying us that she would be taking a different position within the agency and would be turning over Alex’s file to another intake coordinator. Later that day, she called me to discuss respite care services the agency could provide for us. After not having heard from her in months, I was surprised that she contacted us to offer assistance. Nonetheless, I appreciated that she explained the various services we are eligible to receive, and I was able to remind her that we were most interested in getting Alex involved in the day program, which apparently is still on hold at the moment. Fortunately, we’ve become good about waiting for this after over a year of being on the waiting list.

On Thursday, Alex’s dentist’s office called me to let me know they had set a date for his dental appointment at the hospital next month. In addition, he must see a doctor affiliated with the hospital where the dental work will occur the week prior to that appointment to make sure he is healthy enough for the anesthesia. I appreciated that she had scheduled this for us, as well, but it was the same time as the appointment I had rescheduled with his psychiatric nurse practitioner, which meant calling her office to change his appointment again to the following week. Fortunately, we are able to take care of all these various appointments before Ed and I have to go back to our teaching jobs.

On Friday, Alex decided that he needed to go to the eye doctor, probably because Ed and I have both been to the eye doctor for our annual appointments this month. Even though all evidence shows that Alex has perfect eyesight, he insists that he should have his eyes checked. After he pestered me repeatedly about making an appointment, I called the optometrist, and Alex is delighted that he will see him tomorrow morning. Ed and I are praying that Alex will be cooperative for the eye tests and that his eyes are as healthy as we think they are.

Yesterday, after my mammogram, I spent time researching a new antifungal drug Alex’s doctor has prescribed in yet another attempt to get rid of the thrush infection of his mouth that we have been dealing with for over a year. With all the medications Alex takes to keep him calm, adding anything new to the mix makes me a little nervous and sends me to websites checking for possible drug interactions. Convinced that the new antifungal should be safe, we will start that medication today and pray this will be the magic bullet that finally eradicates the stubborn candida fungus in his mouth.

Aside from my role as Alex’s personal assistant in setting up and coordinating appointments with various professionals who help him, I’m also his social director who comes up with daily outings to keep him entertained and makes sure he has a fun summer. This week, we went to two outdoor band concerts in the park, visited Bass Pro Shop for the first time, had dinner at Taco Bell twice so he could enjoy his favorite Cantina Bowl with rice and beans, took him to an arcade to play video games of Wheel of Fortune and Deal or No Deal, walked with him on the trails of a nearby nature preserve, got him apple chips and a soft drink at the Target Café, and took him to the Indiana Dunes State Park beach where he waded in Lake Michigan. Certainly, we had a busy week, but an enjoyable one, too, even thought it was not the relaxing/home project one suggested by the x-ray technician who did my mammogram. However, this week reminded me that I must be at my best so that I can take care of Alex’s needs, and I’m thankful for my health, even if that means enduring those annoying mammograms.  While I wish my house were more organized and that I had more time to read for enjoyment instead of research, I am grateful to have my summer “off” so that I can devote more time to Alex, making sure that he, too, is healthy and can enjoy life to the fullest.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people. Remember that the Lord will give you an inheritance as your reward, and that the Master you are serving is Christ.” Colossians 3:23-24

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