Sunday, July 26, 2015

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

Sunday, July 19, 2015

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

Sunday, July 12, 2015

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

Sunday, July 5, 2015

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

Sunday, June 28, 2015

Alex Asks

As autism parents, Ed and I are blessed that Alex, unlike many people with autism, can speak. Although speaking is difficult for him both in terms of generating what he wants to say and in terms of articulation, or speaking clearly, he can express himself enough that we can understand what he wants to convey verbally. For many years he struggled to construct questions, yet we knew he wanted to ask about the things he had seen and heard. Even though we modeled for him how to ask questions and taught him the W’s (Who, What, When, Where, and Why), he could not put all the pieces together to ask the questions he had in mind. Instead, he would simply say a key word in a questioning tone of voice so that we knew he wanted to know something more about it. However, over time he has thankfully developed the ability to ask us questions so that we get glimpses into what is going on in his mind, and we recognize that the things that sometimes seem rather superficial are actually quite deep.

Since we gave him an iPad Mini several months ago, Alex asks us fewer questions because he can ask Google for information he thinks we don’t know. To make sure he is visiting appropriate websites, Ed and I regularly check his search history to see what topics he has Googled. Not only are we relieved that he consistently uses safe websites, but we are also fascinated when we see what questions he has asked Google. For example, he asked Google this week, “How much does a bathtub weigh?” Since he loves numbers and baths, I suppose this question shouldn’t surprise us. For another search this week, he asked, “How many children are there around the whole world?” Additionally, he asked, “How many home runs does Alex Rodriguez have?” The most unusual topics this week were “Rolex watches” and “Afro wigs”; I’d love to know what triggered his curiosity about these two topics.

Looking down through the Google search history list, we can see that he is most interested in learning about people, and as we know, he wants statistics about them so that he can categorize them. This week he searched for ages, heights, and weights of former baseball player Mark McGuire, celebrity chef Emeril Lagasse, Wheel of Fortune’s Vanna White, newscaster Jim Lehrer, and singer Bob Dylan. The celebrity who seemed to fascinate him most, however, is Suzanne Whang, who narrates several shows on HGTV. He wanted to know her birthday and weight, but clearly what he finds most interesting about her is her voice. Specifically, he had Googled “Suzanne Whang’s voice,” “Listen to Suzanne Whang’s voice” and “Suzanne Whang has got a soothing voice.” Now we understand why he has shown an enthusiasm for watching home improvement shows lately. He’s really not watching them as much as he’s listening for Suzanne’s soothing voice.

While Google helps Alex answer trivia questions about celebrities he likes, he still relies upon Ed and me to answer other questions. Not long ago as we were saying bedtime prayers together and naming off all the people whom he wants God to bless––a list that seems to grow longer every week––I asked him if we’d missed anyone. He asked me, “How about Dr. [name of psychiatrist we saw only once eight years ago]?” At first I was surprised that he even remembered this doctor because our encounter was brief and long ago. Also, I was totally unimpressed with this doctor because he was rather rude and very unhelpful, which is why we never saw him again. Moreover, he basically ignored Alex during the appointment, so I have no idea why he would have made an impression on Alex. However, Alex remembered him and wanted to pray for him, and so the psychiatrist we saw only once has become a regular in our nightly “God bless” list. Somehow Alex believes this doctor needs blessings, and the more I think about it, Alex is absolutely right. Even though the doctor showed little regard for Alex, Alex didn’t take offense and showed the proper attitude by repaying rudeness with kindness, which makes me proud as his mother.

Recently Alex asked me an interesting question that also showed his compassion toward others. Out of the blue, he asked me if he could learn sign language. When he was in special education preschool, sign language was part of the curriculum to help the students with speech delays learn an alternative way to communicate. Because Alex also has fine motor delays, he could not make his hands do the symbols, and he really wasn’t interested in learning how to use sign language. Nearly twenty years later, he suddenly wants to learn sign language, so I asked him why. Immediately he explained that he wanted to be able to talk to another young man in his day program who is hearing impaired and has limited speech. The thoughtfulness behind his motivation made me proud of the young man he has become. Even though autism impairs his social skills and the motor skills in his hands, Alex wants to be able to communicate with a friend and is willing to do the work needed to accomplish this goal. Consequently, I taught him how to finger spell his friend’s name in sign language, and even though Alex’s fingers struggled to make the letters correctly, he smiled as he kept trying.

Because words come easily for me, I have often spoken for Alex, knowing that he struggles to express his thoughts and feelings. However, I realize that he has a great deal to share with the world, and I need to encourage him to allow his voice to be heard. Clearly, he has shown independence by developing his typing and written language skills so that he can discover more about topics of interest to him. What pleases us even more, though, is that he is not only improving his speech but also learning to convey his compassion for others by learning to communicate with them in ways that are difficult for him but are comfortable for them and by praying for people he believes deserve God’s blessings. And so, I conclude with a question of my own: Is it any wonder that my son makes me so proud?

“And without question, the person who has the power to give a blessing is greater than the one who is blessed.” Hebrews 7:7

Sunday, June 21, 2015

Autism Dad

When Ed envisioned fatherhood, I have no doubt that he never pictured himself as being an autism dad. Nonetheless, he has not only accepted the additional responsibilities and concerns of raising a child with autism, but he has also become more patient and more devoted because of Alex’s special needs. Unlike some fathers who flee when the terrain becomes rocky, Ed has remained steadfast as we have worked together cooperatively to parent Alex the best way we know how. Today on Father’s Day, I would like to give Alex’s dad proper credit for just a few of the many things he does to make Alex’s life––and therefore, my life––better, or in the affirming words of Alex, “good and special.”

1. He has created a younger version of himself in Alex. As Alex grows older, he has become his dad’s twin who loves math, seafood, and Bob Dylan—all things that I despise. Sometimes, when I hear the caterwauling of Bob’s voice coming from the basement while they are listening to him “sing,” I suspect that they are enjoying the thought of annoying me by turning up the volume so that I must listen, as well. While I don’t dare venture any closer when they are listening to music, I do enjoy observing the two of them as they watch sports together on television. Although Alex enjoys the numerical aspects of sports, such as statistics, I think he enjoys spending time with his dad even more. Their shared contentment makes me content—even when I don’t agree with their taste in music.

2. He takes great pride in all of Alex’s accomplishments, no matter how small they may seem. Having gone through some very difficult stages with Alex, we are grateful when things go smoothly. Whenever we take Alex to a restaurant or a family gathering, we are amazed how well Alex behaves now, and Ed always praises Alex and tells him how much fun going places with him is. Also, Ed will later comment to me about how good Alex’s behavior was and about how he appreciates that we can relax when we take him places because he is so good now. In addition, Ed’s pride in Alex shines through when he tells me about his experiences dropping off and picking up Alex at his day program, which is one of the responsibilities he has gladly assumed. Although we were a little nervous about how Alex would do in the day program, Ed has been pleased to share with me the positive response Alex has received from the staff and the other clients.

3. He has become amazingly patient. Because autism has presented many obstacles for Alex, mastering skills often takes a long time. Nonetheless, Ed encourages him constantly with praise and convinces Alex that he can do tasks that seem too hard for him. Although I tend to want to do things for Alex because I don’t want him to be frustrated, Ed knows that Alex must do things for himself and coaches him patiently so that he can feel the sense of accomplishment of doing something himself, even if it takes some time. In addition, Ed gently and patiently encourages Alex to improve, reminding him to stand up straight with his hands at his sides and encouraging him to speak louder so that we can hear what he has to say. Sometimes figuring out what Alex is saying is like playing a game where we ask him, “Where did you see that?” “What letter does it start with?” “Can you spell that?” and “What’s the most important word in that sentence?” to see if we can use clues to figure out what he’s trying to tell us. Because Ed never gives up on trying to hear what Alex is trying to tell him, Alex patiently tries to explain to us what he’s saying so that we can understand him.

4. He supports me, no matter what. Through the years, I have many times become excited about some new autism research and methods I have found, and Ed never dampens my enthusiasm for trying something new. Although he asks questions, I know that he shows the wisdom to be led by his head when I tend to be led by my heart, and I know that he trusts my judgment if I truly believe that we need to try something new with Alex. Even though he doesn’t find medical research as fascinating as I do, he patiently listens as I happily rattle off the details. Last week, he even watched an hour webinar on his own volition given by a doctor whom he knows I admire and then told me about a question and answer session I had not yet seen that we watched together and discussed. To know that Ed always believes that I am doing what’s best for Alex has given me confidence to try new things that I would not have been brave enough to try on my own. For that trust, I will always be grateful.

5. He loves Alex as much as I do. Because Alex requires so much time, energy, and attention, he must come first in our lives. Although marriage counselors say that parents must put their spouses first instead of the children to keep a marriage strong, this prioritizing does not work when the children have special needs. Knowing that Ed is as devoted to Alex as I am, I know that he is not jealous of the all-consuming love I have for him because I know he feels the same way. By the same token, I understand that he loves Alex unconditionally, and that comforts me. Moreover, our shared devotion to Alex is precisely what has made our marriage strong: we share the same goal to provide Alex with a happy life in which he can reach his full potential.

Happy Father’s Day to all the dads, especially the autism dads whose lives didn’t turn out the way they’d planned, but whose children blessed them in ways they’d never predicted. Every day I thank God for Ed who blesses Alex and me with his unconditional love for both of us. “There ain’t nothing that I wouldn’t do, go to the ends of the Earth for you, make you happy, make your dreams come true, to make you feel my love.”––Bob Dylan

“My children, listen when your father corrects you. Pay attention and learn good judgment, for I am giving you good guidance. Don’t turn away from my instructions.” Proverbs 4:1-2

Sunday, June 14, 2015

New Things

This past week was the first week of my summer vacation from school, but it was a busy week filled with activity and new things. Thankfully, Alex handled the hectic schedule and transitions amazingly well, which shows the progress he’s made in being more flexible and willing to try new things.

On Monday, we had an appointment with his psychiatric nurse practitioner who prescribes his medications for OCD and anxiety. This was the second time that we had visited her new office, which is conveniently located less than ten minutes from our house. Previously, we had to travel about thirty minutes to her old office, and we’re thankful that our travel time is much less now, even though we only need to see her every six months.

For this appointment, Alex did an especially good job of answering her questions instead of relying on us to answer for him. We were also pleased to tell her about the additional services that Alex receives since she last saw him in December. She had good news to share, as well, telling us that all of Alex’s blood tests looked very good. Since his lab work indicates normal levels and he is doing so well, she decided to not make any changes in his medication. After we thanked her and left her office, we took Alex to Target to pick out the things he would need for his next adventure on Tuesday.

“Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert.” Isaiah 43:19 KJV

On Tuesday, Alex not only had computer class at his day program for adults with disabilities, but he also stayed for lunch hour there with his peers for the first time, something he’d been eagerly anticipating for weeks. With his brand new lunch bag that he chose himself, he headed off for class and lunch with friends. When Ed went to pick him up afterward, they told us that he had done very well but was a little shaky, which can happen for various reasons.

After we questioned him a bit, he told us that he was a little nervous that we might not pick him up on time after lunch. Considering that he’s used to being around us most of the time, his separation anxiety was understandable. We reassured him that we will always pick him up on time, and he seemed satisfied. During his behavioral therapy session that afternoon, his therapist also assured him that he didn’t need to worry about being picked up after lunch because he could depend on us.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19 ESV

On Wednesday, his caretaker Jessica came to, as she says, “hang out with” Alex in the afternoon. Ed and I had planned to go out to lunch while she was there, but Alex seemed to be a little off. In fact, he told me that if we left, he was going to be bad for Jessica. Since that didn’t sound promising, I told Jessica that we’d stay home since I didn’t trust him. However, Jessica stepped up, assertively told Alex that he was going to behave while we were gone, and encouraged us to go, insisting that they would be fine. Since I still had doubts, I told her to call me on my cell phone if she needed anything, and I kept checking it throughout our lunch. However, she never called, and when we came home, she told us that Alex had been perfect and had not given her a bit of trouble. This was the first time that I had left him when I was concerned he might not behave, but Jessica’s no-nonsense attitude showed Alex that she was boss, and he complied.

“See, I will do a new thing, now it shall spring forth; shall you not be aware of it? I will even make a way in the wilderness and rivers in the desert.” Isaiah 43:19 MEV

On Thursday, Alex once again had computer class and lunch at his day program, and he once again got along very well. In fact, the supervisor told Ed that after lunch, she had Alex help clean up by washing dishes, wiping off tables, and running the vacuum cleaner. Not only was he comfortable having lunch there on just his second time, but he was also practicing daily living skills by cleaning up afterward. He seemed pretty proud of himself when he told us what he had done while he was there.

That afternoon, we had another new thing: instead of having his music therapist come to our home for his session, we went to the music therapist’s new office here in town for the first time. Even though we had prepared him for this change, his music therapist and I anticipated that he might need some transition time to adjust to the new setting. However, Alex sat right down at the keyboard with a huge smile on his face, ready to start the session. Afterward, his therapist told me that he had done a terrific job and didn’t seem to mind being in a new place at all. This new flexibility on Alex’s part amazes all of us who know him well.

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19 NIV

On Friday morning, we took Alex to his new doctor for a follow-up visit since he last saw her for the first time in the fall. At that visit, he was pretty edgy and didn’t seem comfortable in the new office. However, this time he was calm and pleasant, and he answered the doctor’s questions nicely. Because he has yeast overgrowth, thrush, in his mouth again, we’re going to treat him with antifungal medication, and we’re going to try vitamin B12 shots for a few months to treat his slight anemia. Even though we have done these treatments before, doing them with a new doctor feels different. However, we like her very much because she is kind to Alex and takes our concerns seriously. We pray that she will help him continue to heal.

“Be alert, be present, I’m about to do something brand-new. It’s bursting out. Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.” Isaiah 43:19 MSG

Yesterday we started Alex on a new supplement to help heal his gut and boost his immunity. After listening to an online lecture featuring a doctor who specializes in internal medicine and wellness, I found his explanation of inflammation and its connection to disease logical and fascinating. Consequently, I decided to try his recommended protocol for Alex in hopes that we can eradicate the stubborn yeast infections that have plagued him for more than three years. We pray that this new method will bring healing not just to Alex but also to others with autism. As someone who does not like change, I felt a bit unnerved as this week of new things shifted us out of our comfortable rut. Nonetheless, I have faith and hope that God is making the paths out of the autism wilderness, desert,  wasteland, and badlands, and He is taking Alex where he needs to go. Behold!

“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 NLT

Sunday, June 7, 2015

Little Things Mean a Lot

My school year ended on Friday with a teachers’ work day in which we completed our paperwork for the year and packed up our classrooms for the summer. Like our students, we also spent time socializing to make the work more pleasant. As I was visiting with my friend and colleague Melissa, our friend and colleague Justin stopped by to ask where the old textbooks should be taken for recycling. Knowing that Alex would love to have an old science textbook to read, I asked Justin if he could put one aside for Alex. He assured me that he would, and then Melissa asked if Alex would also like to have an old geography textbook, which I knew he’d be happy to have. As I was getting the geography book, Justin returned with not one but four old science textbooks in excellent condition. My friends’ thoughtfulness not only delighted Alex, who was thrilled to have new books to read for the summer, but their kindness also blessed me in that they were doing something nice for my son. While both of them shrugged it off as no big deal, this small gesture meant a great deal to Alex and to me. Indeed, as the old saying goes, “Little things mean a lot.”

Later that day, I received a Facebook invitation from an autism mom friend to a page called “Cards for Trent.” Thanks to Facebook, many autism parents in our area have been able to get to know each other and share information. In this instance, a family friend had made a request that people send graduation cards to a young man with autism. As she explained, Trent has never had a birthday party and will not be having a graduation party and he never asks for much. She went on to say, “He doesn’t have any friends which is ok with him. He loves receiving mail and checks his mailbox everyday hoping there is something in there for him.” With this in mind, she requested that people send him cards congratulating him on his graduation from high school because it would “help bring him some happiness.”

After reading this heartfelt request, I was deeply touched because, like Trent, Alex and other young adults with autism often lack the social skills needed to have friends. Fortunately, Alex doesn’t really seem to notice because he considers our family, my friends who have been kind to him, and his therapists to be his friends. For him, that’s enough. However, knowing how much small acts of kindness mean to Alex, I copied down Trent’s address and sent him a graduation card the next day. That day, his family posted a picture on Facebook of his sister holding a big stack of cards they had received, and I’m sure they were grateful for the kindness of people who had reached out to their son. I hope that these cards make their son as happy as Alex is when he receives cards in the mail. In this age of convenient e-mail and text messages, we sometimes forget that sending a card in the mail can mean much more. For example, every year my dear friend Sharon always sends Alex a birthday card in which she writes a personal message to him and signs it, “Your friend, Sharon.” Alex looks forward to receiving his card from Sharon every year, and he often carries it around the house with him. Little things mean a lot.

A quick Google search of ways to help parents of children with autism will bring up links to lists of suggestions of what to do, what not to do, what to say, and what not to say. For those who want to help but are unsure of how their offers might be accepted, I would suggest this: send the child/adult with autism a card in the mail to let them know you are thinking of them, especially for a milestone—birthday, graduation, holiday, etc. We have been blessed that Alex has various people who remember him with cards: my parents who send him cards for each holiday along with some spending money, my sister who makes special mathematically themed cards for him, Alex’s Aunt Pat who sends cards for holidays and includes gluten-free and dairy-free treats, Alex’s Aunt Babs who sends him postcards from the places she’s traveled, and other family and friends who reach out to him in thoughtful ways. Even though Alex lacks the language skills to express his appreciation, I see how his eyes twinkle and his smile spreads across his face when he realizes that someone cared enough to send him a little something to brighten his day. As his mother, those acts of kindness bless me, as well.

Last week, we were at the grocery store looking at a display of the Coke bottles that say, “Share a Coke with” followed by a variety of first names. Alex enjoyed looking through these bottles and grinned whenever he recognized the names of family, people who work with him, and family friends.  Although he doesn’t express affection easily, these people mean a great deal to him. I know this because he names all of them in his prayers he recites with me every night before he goes to sleep. The next day, he asked me if there were any bottles that said, “Share a Coke with God.” I told him I didn’t think so, but I thought that was a really good idea. Whenever I feel wistful that Alex doesn’t have friends like most people his age, I remember that Alex doesn’t feel that way. He knows that God is his best friend, and he cherishes those who have been kind to him, even in small ways that would seem rather insignificant to most people. Somehow I think God would enjoy sharing a Coke with Alex, who sees the good in people and shows his appreciation by asking God to bless them every night. What more could anyone want in a friend?

“If your gift is to encourage others, be encouraging. If it is giving, give generously. If God has given you leadership ability, take the responsibility seriously. And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8

Sunday, May 31, 2015


As another school year comes to a close, those of us who are teachers try to impart some final words of wisdom to our students before they leave our classes, hoping they may remember something useful from the time they spent with us. Traditionally, this time of year brings graduations and graduation speakers, who, like teachers, offer platitudes to young people going out into “the real world.” While graduation seems like the celebration of the end, these ceremonies known as commencement actually signify the beginning.

Around the country, universities invite various noted celebrities, politicians, and alumni to speak at their commencement ceremonies to give advice to the graduates. Some of these famous people seem to view themselves as experts on life, yet one might question their true expertise. Others offer wisdom notable enough to be quoted in the media. For example, the following quotes were made recently during commencement addresses:

Academy Award winning actor Matthew McConaughey at University of Houston: “Do not fall into the entitlement trap of feeling like victim. You are not. Get over it and get on with it.”

Musician Jon Bon Jovi at Rutgers University: “As the night ignites the day, go make some memories along the way.”

Former President George W. Bush at Southern Methodist University: “You can be hopeful because there is a loving God.”

These comments intended to enlighten young people were similar to those I read last night in a list of one hundred tips for life supposedly created by a high school economics teacher for his students, entitled, “An Econ Teacher Gave His Senior High School Students His Personal List Of Wisest Words…And They Make a Lot of Sense.” [To read this list, please click here.]  Among these one hundred helpful suggestions, I found the following three especially useful:

#71 “If you don’t understand, ask before it’s too late.”

#75 “Keep your word.”

#90 “Make the little things count.”

After reading these commencement speeches and the teacher’s tips, I considered the value of the advice given. Is the purpose of the advice really intended to help others––as I truly believe most advice is given in that spirit, or is it to make oneself seem superior to others? As I read many articles written by parents of children with autism, I’m sometimes perplexed by those who assert themselves as experts, especially when their children are quite young. After being an autism mom for nearly twenty-three and a half years, I have learned from many experiences. However, one of the most important things I’ve learned is that I am still learning something new every day. Certainly, I’m no expert, but I do like to share what I have learned along the way, in hopes that our experiences may be of some help to others, just the way I like to share a good recipe for others to enjoy. With that disclaimer in mind, I would like to offer my fifteen for ’15––some things I’ve learned from being an autism mom.

Begin one new thing (supplement, therapy, method) at a time so that you know what to keep doing and what to stop immediately.

Don’t fret. This annoying phase will pass and be replaced by an equally annoying one.

Focus on your child’s strengths, for those will be needed to overcome the weaknesses.
Ignore rude comment by those who do not understand. In the words of my wise friend, “Smile and think, it sucks to be them.”

Find a doctor who listens. If your doctor doesn’t really listen, find another.

In the words of Barney the Purple Dinosaur, “Please and thank you are the magic words.” Expressing gratitude not only makes you feel good, but good manners also make people want to work with you and your child.

Trust your gut as a parent. Instincts are God’s way of telling you which way to go.

When you don’t know what to do, follow the insightful words of my son, “Wait and see!”

Placing duct tape over the speaker of noisy toys muffles them to a comfortable decibel level. Duct tape also nicely secures objects to prevent them from being thrown.

Praise proves productive. Compliments instill pride and give impetus to keep trying.

Mr. Clean Magic Erasers can magically remove nearly anything a child’s fingers leave behind on a wall, door, or woodwork.

Remember the words of the Roman poet Virgil: “Omnia vincit amor”­­––“Love conquers all.”
As Christopher Robin told Winnie the Pooh, “You’re braver than you believe, stronger than you seem, and smarter than you think.”

Pray hard. Have faith. Trust God. Remain hopeful.

And so, as another school year ends, I am thankful for my students who were willing to learn from me and who were willing to teach me. Most of all, I’m proud and grateful that my favorite student, Alex, maintains a love of learning and a willingness to keep improving his skills, beginning each new task with enthusiasm. No teacher could ask for more than that.

“Intelligent people are always ready to learn. Their ears are open for knowledge.” Proverbs 18:15

Sunday, May 24, 2015

Planning for the Future

Just when things seem to be rolling along smoothly, something arises to stir the waters and make Alex’s future a bit uncertain. This week, we had our quarterly meeting with Alex’s team of support specialists, including his case manager, his behavioral therapist, and a representative from the company who provides respite care for him. In addition, the coordinator of his day program where he learns computer skills joined our meeting by speakerphone so that she could update the team on Alex’s progress. Also, Alex’s music therapist, who was unable to attend due to family commitments, provided a written report of Alex’s progress. Every quarterly meeting, Ed and I look around the room and are reminded how blessed we are to have such caring and capable people working with Alex.

As each member of the team provided input on Alex’s progress toward goals, we were pleased to hear positive assessments and encouraged that they believe he is doing very well and capable of learning more. Although we see significant improvements, it’s nice to hear good things from those who can be more objective than we can be as his parents. Probably the greatest blessing is that the two major areas of concern in his behavioral plan—physical aggression and property destruction—are behaviors we have not seen in a while, thanks to proper medication that helps his anxiety and to therapy that has helped him learn better coping skills. With those major hurdles aside, we can focus more upon developing the third area of his behavioral plan—appropriate social behaviors.

Because Alex is doing well, we agreed as a team to keep all of his supports in place with once a week sessions of behavioral, music, and recreational therapy, one afternoon a week with his peer companion as respite care, and two sessions per week of computer class at the day program. In addition, he will extend his day program time by staying an extra hour each session and having lunch with his peers at the day program so that he can continue developing his independence and social skills. Needless to say, we are delighted with Alex’s support programs, especially since he thoroughly enjoys working with all of these people and is showing signs of improvement from these interactions with others.

After our meeting, Alex’s case manager told me that she had more paperwork for us to sign but needed to be at another meeting, so we arranged for her to meet with us again later in the week. This time Alex, Ed, and I only met with her, and she needed to ask Alex some questions about how satisfied he is with the people who work with him. Although his speech limitations prevent him from expressing how truly content he is, his answers of “Good,” “Fine,” and “Yes” were accompanied by a convincingly big smile.

Then Alex’s case manager told us that some changes regarding services for adults with disabilities may be coming, based upon a federal government investigation in Rhode Island. She explained that the state agency that oversees services for the disabled in Rhode Island had been cited for not providing more opportunities for jobs, and the federal government is urging all states to encourage more community employment instead of placing adults with disabilities in day programs or sheltered workshops. Hence, day programs, like the one in which Alex is enrolled, may become a thing of the past. She went on to explain that vocational skills will be emphasized more, which is why she intervened to get Alex computer training, which is his best hope for employment.

After she left, I did some internet research to find out more about the Rhode Island programs coming under fire and found an article from January 15, 2014, in the Providence Journal entitled  “Department of Justice probe finds thousands of disabled R.I. adults ‘segregated’ in state programs.” [To read this article, please click here.] Apparently after observing state-licensed day programs and sheltered workshops in Rhode Island, the Department of Justice decided that the adults with disabilities who were participating in these vocational and day services were “unnecessarily segregated.” Consequently, they determined that these people should be integrated by working in community jobs. Although the article gives examples of people who are capable of working in the community instead of doing rote tasks for menial wages in sheltered workshops, I question how many others would be able to work in the community, due to various limitations. In addition to physical, intellectual, and social limitations disabilities may cause, communities may not have jobs to offer these adults or know how to train people with disabilities with the skills needed for the jobs.

Like the concept of mainstreaming special education students into regular education classes, this federal government decision in theory seems like a good idea to provide opportunities to those with special needs. However, the reality is that not enough resources, training, and opportunities for success are actually available. For example, when students go from a special education class of four students to a mainstreamed class of twenty-four students, they certainly cannot receive as much one-on-one instructional time from the teacher, even when various accommodations are put into place. Consequently, they may not be getting all the support they really need. Similarly, if adults with disabilities are placed in community jobs instead of day programs or sheltered workshops, they may not have the skills they need to be successful to complete their assigned tasks and to integrate in the community. While the government proposes this shift in policy is a matter of civil rights, I suspect that the real impetus for change is the cost of providing services for the disabled.

If, indeed, the government mandates that day programs and sheltered workshops be eliminated, the results could be disastrous. Too many disabled people need the structure and support of these settings, and not everyone is capable of working in the community. As Ed and I always do, we keep pushing Alex to reach his potential, hoping that he will develop his skills so that he can be independent eventually, and we trust that God has a plan for his future. However, not all adults have the resources Alex does, and I believe that the Department of Justice’s decision could have a profoundly negative impact on thousands of adults with disabilities. Now that would certainly be an injustice.

“In the same way, wisdom is sweet to your soul. If you find it, you will have a bright future, and your hopes will not be cut short.” Proverbs 24:14

Sunday, May 17, 2015


This past week, a colleague who teaches special education at the school where I teach English was commenting that some of her students who have autism don’t realize that they have autism. In fact, some of their parents insist that they do not want their children to know that they have autism. As teachers of these children, we must respect the parents’ decision and be careful never to reveal that we know those children have been diagnosed with autism. My colleague, who knows that Alex has autism because we have always been open about his condition, then asked me, “Does Alex know he has autism?”

As I explained to her, Alex does, indeed, know that he has autism and has been aware of this diagnosis ever since he received it as a preschooler. We never wanted him to think that we were keeping a secret from him, and we thought that not telling him might make him think he should feel ashamed of having autism, which we certainly did not want. Just as parents who adopt children are encouraged to tell their young children that they have been adopted so that they grow up knowing the truth and don’t discover it later in life, we have always been candid with Alex about autism. Because autism impacts his life tremendously, we wanted him to understand why some things are more difficult for him than they are for other people. Alex knows that just as he has brown eyes and brown hair, he also has autism. We’ve never had to wonder when we should break the news to him because he already knows.

Being someone who likes knowing the origins of words, I find the etymology of the term autism interesting. Coming from the Greek root autos, meaning self, the word essentially means a state in which the person exists separately from others. As WebMD explains, “One symptom common to all types of autism is an inability to easily communicate and interact with others. In fact, some people with autism are unable to communicate at all. Others may have difficulty interpreting body language or holding a conversation.” (“History of Autism.” Web MD, 12 May 2013.)

Certainly, Alex’s struggle with spoken language has hindered his ability to interact with other people, and we have worked with him to improve his speech and social skills. For him, spoken English is like a foreign language to most of us, where he struggles not only to find quickly the words he wants to say but also to figure out the proper grammar and syntax. Add in sensory issues that overwhelm him, and I imagine that for him, holding a conversation is much like trying to make oneself heard in the midst of a middle school cafeteria at lunchtime. No wonder he prefers to sit quietly and just listen instead of engaging in the discussion!

On Friday evening, we went to my sister’s house to celebrate my niece’s birthday. In a room full of fourteen lively family members and one dog, Alex sat calmly and quietly, seeming to enjoy listening to the various conversations without being overwhelmed and even smiling as he heard things that amused him. At times, he would quietly imitate people, especially my sister, whose voice fascinates him, repeating what was said. Although we know this is not socially appropriate, we believe that Alex is practicing speech so that he can better interact with others. So long as he does this quietly without disturbing others, we allow him to do it. Moreover, we explain to others that he does this because he really likes the person whom he is imitating; truly, “Imitation is the sincerest form of flattery” when Alex repeats after other people.

As Alex sat contentedly enjoying the discussions, he seemed as though he wanted to join the conversation but did not know how. At one point, my brother was talking about NASCAR, one of Alex’s favorite topics, and Alex quietly but excitedly asked Ed and me, “Is Uncle Freddy getting tickets to a NASCAR race?” We explained that Uncle Freddy was talking about having a gift certificate to learn how to drive a racecar on a NASCAR track, which Alex seemed to find interesting. Later, he noticed that my niece’s boyfriend had holes in the knees of his jeans, and he quietly commented to Ed, “He needs to buy a new pair of jeans because he has holes in them.” Ed then quietly explained that he had probably bought them that way because that was the style. Alex seemed a bit perplexed, but accepted that explanation.

After that, as my niece Hannah was talking, Alex leaned over to me and asked with concern, “Does Hannah need to have surgery?” When he last saw Hannah, she was talking about going to the orthopedic specialist to see if she would need surgery on her hip this summer, and he wanted to know what the doctor had said. Realizing that Alex had been listening to conversations with interest and was concerned about other people, I knew that he really did want to participate in the discussion. Instead of answering him myself, I told him that he could ask Hannah himself. Although he was tentative, he asked her whether she would need surgery, and she seemed pleased that not only had he shown concern about her but also that he was relieved she would not need surgery.

Although autism makes conversation and social interaction difficult for Alex, he does not exist in his own world. He genuinely cares about other people, even if he doesn’t quite know how to talk to them, but he wants to engage with them and find out more about them. Indeed, he’s even showing concern about them. Even though we were a little worried about how he would handle being in a large group of people, we realized Friday evening how important it is to give Alex opportunities to practice the conversation skills and social skills we have been practicing at home with him. Clearly, he is learning these valuable life skills, and we are delighted to see him making progress in these areas. More importantly, we are thankful to see his concern for other people and evidence that he is learning how to express those concerns verbally, proving that he continues to overcome the obstacles autism has put in his path so that he can truly enjoy being with others.

“Let your conversation be gracious and attractive so that you will have the right response for everyone.” Colossians 4:6

Sunday, May 10, 2015

Blessings of Motherhood

“…While Earth herself is adorning,
This sweet May-morning,
And the children are culling
On every side,
In a thousand valleys far and wide,
Fresh flowers; while the sun shines warm,
And the babe leaps up on his mother’s arm:––
I hear, I hear, with joy I hear!”

William Wordsworth, “Ode: Intimations of Immortality from Recollections of Early Childhood”

Yesterday, as an early Mother’s Day gift, Ed brought me a beautiful bouquet of a dozen delicate pink roses from Alex and him. As I began to unwrap the protective covering surrounding the flowers, Ed noticed that one had been bent and snapped off its long stem. When I began to place them in a vase, their leaves fell off, and I found a stem without a rose. Disappointed that the roses were not as perfect as they had appeared, Ed sighed and apologized. However, I was delighted with my ten and a half leafless roses. Not only am I blessed to be Alex’s mother, but I am also blessed to have a loving and thoughtful husband who makes every holiday special. Besides, as I explained to him, those ten and a half roses symbolize our life with autism­­––not what we expected, but special and sweet nonetheless.

For all the sessions of various therapies, I’m thankful for the progress Alex has made.

For all the different pills I’ve administered, I’m grateful that Alex is better.

For all the questions I’ve had, I’m indebted to those who have answered them.

For all the times I have waited, I’m pleased that the waiting was worthwhile.

For all the worries and tears and fears, I’m appreciative of the joys Alex has brought me.

For all the prayers I have prayed, I’m content that God has always been faithful.

Twenty-four years ago, when I first discovered that I was going to be a mother for the first time and that I was carrying Alex, who was to be my only child, I had no idea what life had in store for us. After two dozen Mother’s Days, I can look back over all the troubles and triumphs and know how blessed I am to have Alex as my child.

When I update Alex's therapists on his progress, I’m thankful for our awesome support team.

When we do typical family things like going shopping or eating at restaurants or watching television, I’m grateful that we can enjoy these times together because Alex is better.

When Alex asks me countless questions, I’m indebted to Google for having answers when I do not.

When I tell Alex I’ll do something in five minutes and he sets the kitchen timer, I’m pleased that he makes me keep my promises.

When Alex takes my hand in a crowded place, I’m appreciative that he trusts me to guide him.

When Alex and I say bedtime prayers every night, I’m content that I have taught him always to have faith in God.

Happy Mother’s Day to my wonderful mother, who taught me all the things I needed to be Alex’s mother, to my sister and my sisters by marriage, to my aunts and cousins, to my dear friends, and to the autism moms like me. May God bless our children and us!

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Sunday, May 3, 2015

Autism: Something Old, Something New

This week, the Huffington Post published an outstanding article online entitled “Autism: Maybe It’s Not What We’ve Been Told.” [To read this article, please click here.] Written by an autism dad with a degree in biology, he explains how his three-year-old son with autism made significant sudden improvements in his speech, eye contact, behavior, and motor skills after being treated for a strep infection with antibiotics. Amazed by the positive changes in his son, John Rodakis began studying medical research regarding connections between antibiotics and improvement in autistic symptoms and was surprised how little research has been done in this area.

As he points out in his article, nearly all of autism research focuses upon genetics instead of biomedical causes. However, as he notes, recent medical research indicates that gut bacteria has been linked to ulcers, food allergies, and possibly diabetes. By focusing almost exclusively upon autism as a strictly genetic disorder instead of a medical condition, scientists may be missing the real cause of autism, one that could actually be treatable and perhaps even cured. John Rodakis asserts the need for research to pursue connections between autism and metabolism, immune function, and the microbiome (the bacteria, fungi, viruses, and other organisms that live on and inside the human body). He states, “The encouraging thing about this view is there is reason to believe that many of these children can get better.”

Also in the news this week, the U.S. government has changed its recommendation regarding how much fluoride should be put in drinking water, lowering the amount for the first time in more than fifty years. [To read a news report on this issue, please click here.] In 1962, fluoride began being added to drinking water supplies as a way to prevent tooth decay. However, apparently some children are getting too much fluoride, causing their teeth to develop white splotches, which are now found in approximately 40 percent of adolescents. This change of policy has made me wonder about what other recommendations the government has offered that may have negative effects upon children. While the white splotches appear to be only cosmetic, could fluoride or other substances our children are given for health reasons be responsible for unexplained increases in ADD/ADHD, allergies, asthma, and autism? As parents, we must pursue the unanswered questions behind what is causing our children’s health issues.

In previous blog entries, I have noted that we have followed the research done by doctors and scientists whose own children have autism, knowing that they will actively search for ways to make their children better but will not engage in risky treatments that could harm their children. While some of the methods we have tried with Alex under doctor supervision have had little or no effect upon him, others have certainly made him better. After tests showed that he had sensitivities to the proteins in milk (caseins) and grains (glutens), Alex has been on a gluten-free and casein-free diet that has kept him healthy and without digestive issues that plague many people with autism. Other tests revealed that he had heavy metal poisoning, specifically arsenic, mercury, and aluminum, and we treated this condition through chelation therapy with DMSA, a sulfur compound that binds to the toxic metals and removes them from the body. Had we left those toxins in his system, he could have developed serious health issues, such as cancer, in the future. One of the most significant improvements we observed occurred when we treated him with methyl vitamin B-12 shots, which we believe treated nerve damage. Within a few weeks of starting twice a week B-12 shots, Alex was finally able to toilet independently after ten years of unsuccessful potty training. To us, that was a miracle cure. Had we simply assumed that autism is a genetic disorder that could not be treated medically, we would not have seen the progress we have celebrated over the years.

Currently, we are still struggling with recurrent Candida yeast overgrowth in Alex’s digestive system, a battle that has been fought throughout his life intermittently but especially vigilantly in the past three years. Using a variety of antifungal medications and nutritional supplements, we keep trying to get rid of this stubborn invader. Over time, we have learned to recognize the signs, which I have dubbed ABCD: A-acne outbreak, B-behavioral decline, especially an increase in OCD and anxiety, C-coating of mouth and tongue in the morning which makes swallowing pills difficult, and D-dandruff outbreak. When the Candida is under control, all of these symptoms disappear. When the Candida is out of control, Alex’s negative behaviors escalate, even to the point of aggression; therefore, we must begin treatment as soon as we see the early warning signs. Hopefully, we will finally get the yeast under control so that Alex doesn’t have to suffer the annoying symptoms that bother him.

Consequently, like autism dad John Rodakis, I fully believe that autism is not what we’ve been told––a strictly genetic disorder that affects the brain––but a medical condition that needs to be investigated further so that our children can be treated and get better. If they have digestive conditions such as leaky gut or fungal and/or bacterial infections or nerve damage or heavy metal poisoning or allergies, to ignore these conditions is simply wrong. As John Rodakis states, “We need to fund this kind of research. Our children deserve better answers.” Indeed, they do.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:13