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

The Calm After the Storm

 

Sometimes the signs are so subtle, they would be easy to miss. Nonetheless, we celebrate every step of progress we see Alex make, knowing that he is, indeed, getting better. This week some seemingly small incidents reminded us just how far he has come, especially in learning how to remain calm in any situation.

On Thursday morning, Alex awakened shaking. Shaking is not uncommon for Alex and has various triggers. For example, the lithium he takes to stabilize his mood can cause occasional tremors in his hands. Also, he has hypothyroidism that makes him more sensitive to being cold, and he sometimes shakes when he feels cold. In addition, when he’s excited or ecstatic about something, he will shudder with joy, as though he cannot contain the happiness inside him. On that morning, however, the shaking was not caused by any of those reasons. After looking at the expression on his face, I could tell that he was having a panic attack, and excess adrenaline was causing his entire body to shake. Often panic attacks will send him into the fight of the “fight or flight” mode, and we knew we had to approach him gently so that he would not become aggressive.

As we tried to soothe him, he told us that he was upset because he had made a mistake. Knowing we shouldn’t push him too hard or argue with him, we told him we understood, and we respected his decision to stay home from his computer class. Since he loves going to computer class, we knew he must have really not felt well in that he was deciding not to go. We asked him if he wanted us to stay with him until he felt better or if he’d rather be alone, and he told us he just wanted to be left alone. His ability to make rational decisions and remain reasonably calm without escalating to yelling, throwing things, or becoming aggressive demonstrated a significant and welcome change in his handling of anxiety. After reassuring him that we were there if he needed us, we honored his request to be left alone. Fortunately, he also understood my need to check on him regularly and never became upset when I asked him if he was feeling better.

A little later, I asked him whether or not he felt well enough to go to music therapy that afternoon. Although he was less anxious, he was still a bit jittery. However, he decided that he wanted to go to music therapy and began getting ready to go. I asked him whether he needed a dose or even a half dose of Valium, which his doctor has prescribed for panic attacks, to make him feel calmer, but he was confident that he didn’t need the medication to cope with his anxiety. When we arrived at his music therapist’s office, I told him that Alex had been anxious that morning but insisted that he wanted to come to music. His therapist told him that he admired his dedication and reassured Alex that if he wasn’t feeling well, they could cut the session short so that he could go home and relax. Sitting in the waiting room, I wondered if Alex would make it through the entire session, but he did, emerging smiling at the end. His therapist told me that Alex had done a great job and seemed to be calm. In fact, I sensed that the session had made him even calmer, perhaps doing a better job than the medication might have. Clearly, Alex knew what he needed to make himself feel better, and he was able to communicate those needs to us instead of resorting to negative behaviors, which is a tremendous blessing.

Later that evening, we were able to go out to a nice restaurant as a family to celebrate our wedding anniversary, and Alex showed no signs of the anxiety that had bothered him in the morning. He thoroughly enjoyed his dinner, especially since it was his favorite food––shrimp––and used nice table manners. In addition, he practiced social skills by engaging in conversation, asking appropriate questions, and never interrupting. Even when another waitress came over to engage him in conversation (We learned that she had worked with adults with disabilities.), he answered her questions nicely. Clearly, all of the skills that Alex's therapists and we have been teaching him are making an impact.

Yesterday, we again saw how well Alex has learned to cope in situations that previously might have upset him. We took him to his cousin’s graduation party, where there were lots of people gathered under a tent in mid-90 degree heat. My mom noticed that Alex was shaking, but when I asked him whether he was nervous or excited (knowing that he certainly wasn’t cold), he shuddered and told me that he was excited, meaning that he was happy to be there. Even as a storm loomed closer with thunder and lightening, which used to terrify Alex, he remained calm and pleasant.

With the storm approaching, we decided to take him to a nearby restaurant for dinner. Just as we walked in the door, rain began pouring down, and winds began whipping around. Suddenly, the electricity in the restaurant went out before they could take our order. Even though we were basically stuck there since we didn’t want to go out in the storm, Alex didn’t get upset about the power outage or the storm. In fact, he seemed to see the whole situation as an adventure, commenting, “It’s very rare for the power to go out. The odds are about one in one hundred.” He maintained that calm, waiting patiently for the storm to pass and the power to return, and then happily enjoyed his dinner once the electricity returned and allowed his food to be prepared. Based on past experiences where changes of plans could send Alex into a panic, Ed and I kept watching him to make sure he wasn’t getting agitated, and we were amazed and pleased by how well he handled the situation. Once again, he showed us how much better he is now.

While many people would take for granted a young adult’s ability to cope with a panic attack, a strong storm, or a power outage, let alone to make pleasant conversation, we know how significant these milestones are for Alex, and we thank God for making him better. Learning to handle social situations and to deal with anxiety has not come easily for him, yet he has worked hard so that he can enjoy typical situations, such as going out to a restaurant, or even how to cope in rare circumstances, such as when the electricity suddenly goes out. Essentially, he is showing that he can deal with the storms of life­­––whether internal or external––so that he can enjoy all that life has to offer.

“Then they cried out to the Lord in their trouble, and He brought them out of their distress. He stilled the storm to a whisper; the waves of the sea were hushed. They were glad when it grew calm, and He guided them to their desired haven.” Psalm 107:28-30

Smell and Taste Sensitivity in Autism

 

In last week’s blog entry, I discussed the issue of sound sensitivity, which is quite common in people with autism, and how listening to the EASe CD with modulated music helped Alex overcome his difficulty with loud noises, such as vacuum cleaners and hair dryers. This week, as I was reading various research articles from The Great Plains Laboratory, Inc. Facebook page, I ran across two interesting studies related to other types of sensory issues found in autism. Although Alex’s sensory issues have primarily focused upon hearing, sight, and touch, apparently many people with autism also have overly acute senses of smell and taste, as well.

A news report entitled “Study: Kids with autism don’t react to odors” describes research in which thirty-six children, half of whom had autism and half who did not, were presented with various smells through an olfactometer. [To read this article, please click here.] This tool delivered various scents through the nostrils and then measured how the children responded to those smells by how much they sniffed. Typical children breathed in longer for pleasant smells, such as roses, and breathed in a shorter time for unpleasant smells, such as rotten fish. In contrast, children with autism breathed in the same amount of time, no matter what scent they smelled.

The study notes that the response from the children with autism may be linked to a difference in perception of odors, or this may be a physical issue in that they cannot control their breathing in response to different stimuli. Either or both of these theories seem reasonable, since children with autism typically have sensory and motor issues. Whether this sniff response has possibilities as a diagnostic tool for identifying children who have autism is uncertain, but researchers noted that the observed responses might explain the problems many children with autism have with eating, since the sense of smell is closely linked to the sense of taste. However, as one autism researcher noted, the problems with eating may also be linked to motor problems in swallowing and chewing.

Although I’m not completely certain how well Alex can perceive smells, he will comment when he smells something unpleasant, telling us, “It’s too stinky!” and even leaving the room to avoid the smell he doesn’t like. Moreover, he will tell us to spray air freshener, saying, “Need Oust in here!” if the smell is mild. If the smell is too offensive, he’ll say, “Need to spray Lysol!” Also, he has recently begun to make comments comparing one smell to another, remarking, “It smells like french fries in here.” Consequently, he seems to deal with his smell sensitivities because he can verbalize ways to describe them and or even ways to eliminate those he finds offensive. Perhaps his control over smells is one of the reasons he is not a picky eater like many people who have autism.

In another article posted on The Great Plains Laboratories’ Facebook page this week, the Simons Foundation Autism Research Initiative recently published the summary of a research study entitled “Picky eating sways parents’ views of children with autism.” [To read this article, please click here.]  This study from Italy found no differences in behavior or physical issues, such as gastrointestinal problems, in children with autism who were picky eaters versus those who were more willing to eat a variety of foods. However, parents of children who were picky eaters perceived their children to have more behavioral problems and more stress.

Interestingly, the article notes, “the root cause of picky eating in autism remains unknown.” However, the article fails to address sensory issues that likely would impact the child’s eating habits. If the food smells strange or the texture does not appeal to the child, the child won’t want to eat it. Moreover, as the autism researcher in the previous article mentioned, difficulties in chewing and swallowing often found in autism would certainly play a role in eating problems. While this article focuses upon parents’ perceptions of picky eaters, underlying issues beyond the behavioral and physical components they examined are clearly at work.

As I have mentioned in previous blog posts, we are blessed that Alex has always been a remarkably good eater, willing to try any food. Moreover, despite the limitations his food sensitivities present that restrict him to a diet free of glutens and milk products, he eats a wide variety of foods. For most of his life, the only three foods he would not eat—other than those not permitted on his gluten-free casein-free diet, which he follows faithfully––were popcorn, broccoli, and mashed potatoes. In the past few years, he has even taken two of those foods off his list and now likes broccoli and mashed potatoes prepared without milk products. We suspect that his former dislike of those two foods was more from a texture standpoint than a taste and smell aspect. At this point, the only food he will not eat is popcorn, which he tells us is “too salty and too crunchy.” Needless to say, we are delighted that he is such a good eater; in fact, he eats a more varied diet than either of his parents. He loves seafood, which I despise, and he happily eats peas, carrots, and mayonnaise, which Ed avoids. Apparently, Alex does not have the smell and taste sensitivities that many people with autism have, and we are thankful for that.

While a great deal about autism remains a mystery, sensory issues, such as sound, smell, and taste sensitivity obviously impact daily life. If these hyperacute senses create stress, the person may either avoid uncomfortable situations or may react in ways to cope with the unpleasant stimuli. Often therapists who work with children who have autism will note, “Behavior is communication.” Meltdowns may be the only way some children with autism can communicate how overwhelmed they feel when they are assaulted with sounds, smells, and tastes that are too strong to handle. As parents, we need to find ways to help our children cope with the world that is often too much for them, and hopefully, research will find better methods to allow children with autism to enjoy the variety of sensory experiences in life so that they can live life to the fullest extent.

“Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!” Psalm 34:8

Sound Sensitivity in Autism

 

Last week with the Fourth of July holiday approaching, various people asked me if fireworks bother Alex. Because so many people with autism have sound sensitivities, this was a very reasonable question. In fact, many children and adults with autism find certain noises quite disturbing and must cover their ears or wear noise-cancelling headphones in situations where loud noises are present. Fortunately, fireworks and other annoying sounds do not upset Alex, and I believe that a home therapy program we did with him when he was about five years old greatly helped address his sound sensitivity. As I listened to the teenage boys who live behind us setting off all kinds of fireworks last week, including throwing M-80 firecrackers in garbage cans that made our neighborhood sound like a war zone, I was thankful that Alex isn’t bothered by loud noises any more.

When Alex was little, his sensitivity to sound was one of our first clues that he had autism. As a baby, he would pick up his head when our relatively quiet furnace would come on, and he seemed to recognize the sound of our cars when one of us pulled into the driveway, showing joy that Mommy or Daddy had come home even before we walked in the door. In contrast, the sounds of the vacuum cleaner and hair dryer terrified him, sending him running away and crying. I remember once when he was a toddler that as he and I sat in the car waiting for Ed to scrape ice off the windshield, he was nearly hysterical, apparently upset by the scraping noise.

When I mentioned this sound sensitivity to his pediatrician, who was certain that Alex didn’t have autism and that I was just an overly concerned mother, he suggested that we take him to an audiologist to have musician’s earphones specially made for him to cancel out background noise. Knowing that he would outgrow these custom-made earphones quickly, spending hundreds of dollars on having them made struck me as a waste of money. Instead, I began looking into ways to treat his sound sensitivity, not just ways to block noise, realizing that he would often encounter surprising sounds and may not be prepared with earplugs, earphones, or headphones at all times.

My research led me to reading about auditory integration therapy, or AIT, developed by French ear, nose, and throat doctor Guy Berard in the 1950’s to address hearing sensitivities and imbalanced perception of sounds in the ears. AIT programs typically require twenty sessions of listening to specially modulated instrumental music with a variety of sound frequencies. These twenty sessions typically last thirty minutes each over ten days with two sessions per day that are at least three hours apart. Generally AIT takes place over two weeks––five weekdays followed by a weekend off and resumed the following five weekdays. In addition, AIT requires that the client wear headphones for the thirty-minute sessions and basically do nothing except listen to the music.

After reading that some children with autism respond very well to AIT, I considered whether this therapy might benefit Alex. However, I had some doubts as to whether this treatment had any merit because its methods seemed somewhat suspicious to me. Moreover, the cost of the treatment––typically $1000-$2000––was quite expensive. If AIT worked, it certainly would have been worth the money, but I was still skeptical. Another concern I had was that Alex’s sensitivity to touch was even greater than his sensitivity to sound, and I could not imagine that he would be able to wear headphones for the ten total hours he would be required to wear them for the AIT sessions.

Consequently, I began seeking alternatives and found the EASe CD, which was recommended by another autism mom. EASe, which stands for electronic auditory stimulation effect, was created in 1995 to help address sensory processing issues in children with autism and others with sensory difficulties. Essentially, the program works very similarly to AIT in that the person listens to instrumental music modulated with various sound frequencies for thirty-minute sessions twice a day for ten days. Unlike AIT, however, the creators of EASe seemed to understand that some children would not be able to use headphones and suggested that they could listen to the CD on a stereo with good speakers instead. In addition, the cost of this in-home program, which offered great convenience, was only about $60 to purchase the EASe CD that could be used over and over. After watching Alex cover his ears every time a loud appliance was turned on, I decided it was time to try the EASe CD and ordered a copy.

That summer, I faithfully followed the prescribed schedule of twenty half-hour sessions over ten days, playing the CD that sounded like pleasant but slightly strange elevator music over our stereo speakers with Alex, who was remarkably cooperative about listening. I can still picture him at age five, sitting in our living room, contentedly rocking in our La-Z Boy rocker recliner as he listened to the EASe CD. While I listened along with him, I still had my doubts as to the effectiveness of this therapy, but we soon noticed that he stopped covering his ears when he heard loud noises, and he no longer became upset by the sounds of noisy electrical devices. Over time, his sensitivity to sounds seemed to disappear completely, and I credit the EASe CD with that positive outcome.

Recently, I checked online to see if EASe was still making CDs and discovered that they have expanded their line to several different music CDs from the original one we first purchased in the 1990’s, and they also have also developed games to address sound sensitivity. Moreover, they offer a free download of their EASe music CD, which seems like a great way for parents to try the program and see if their children might benefit. In addition, their website clearly explains how the program works, answers many questions parents might have, and offers testimonials of customers who have benefited from the program. [To check out the EASe website, please click here.]

Even eighteen years later, we still see the benefits of the EASe CD in that Alex handles noise amazingly well, never covering his ears and never needing to wear headphones in noisy situations. We take Alex to concerts, sporting events, and even fireworks displays, and he enjoys himself thoroughly, never bothered by the loud noises that once upset him greatly. With the various issues autism presents that makes Alex’s life difficult, we are thankful that we found a therapy that allowed God to heal him so that he could enjoy typical family outings without being bothered by sounds. Now, that is something definitely worth celebrating with fireworks!

“But Moses replied, ‘No, it’s not the shout of victory nor the wailing of defeat. I hear the sound of a celebration.’” Exodus 32:18