Sunday, October 15, 2017

Mental Health Concens and Autism

 
Last week, Stephen Grcevich, M.D. posted an important and insightful article online at the Key Ministry website entitled “The Mental Health Crisis Among Persons with Autism.” [To read this article, please click here.] Dr. Grcevich adeptly summarizes research published last month in the Journal of Autism and Developmental Disorders regarding the link between mental health issues and autism. As if the challenges of autism were not enough, many people with autism often struggle with mental illness, as well.

The research Dr. Grcevich cites used government administrative health data and focused upon young adults 18-24 years old in Ontario, Canada. These young adults were divided into three groups: those with autism spectrum disorders, those with developmental disabilities, and those who were typical adults. Of those adults studied who were seeking medical help, 19% of the typical people had a psychiatric diagnosis, compared to 39% of those with developmental disabilities. In even greater contrast, over half of the adults with autism––52%–-had a psychiatric diagnosis.

This study also found that the young adults with autism were twelve times more likely than their typical peers to see a psychiatrist. In addition, the young adults with autism were nearly five times more likely to obtain psychiatric services through an emergency room and more than ten times likely to be hospitalized for psychiatric conditions than their typical counterparts. Clearly, young adults with autism face psychiatric crises much more than other people their age do. As the abstract of the research article wisely concludes: “Planning for the mental health care of transitional age adults with ASD is an important priority for health policy.”

While this study examines mental health issues in young adults, another study Dr. Grcevich cites indicates that adolescents with autism also suffer from mental health disorders. This research published in the Journal of the American Academy of Child and Adolescent Psychiatry studied children with autism who were between 10 and 14 years old. This study found that 70% of these children with autism had at least one mental health condition, such as ADHD, anxiety, or depression. Moreover, 41% had at least two mental health disorders in addition to having autism. Consequently, the psychiatric issues seen in young adults in the Canadian study likely began years earlier in adolescence.

If mental health issues in children and adults with autism are not addressed or resolved, tragedy can result. In another article entitled “The suicide epidemic among high-functioning persons with autism,” Dr. Grcevich cites research regarding links between suicide, mental health disorders, and autism. [To read this article, please click here.] Specifically, he refers to a statistic from the British Journal of Psychiatry indicating that adults with autism of average or above average intelligence are nine times more likely to commit suicide than their typical peers.

In another study Dr. Grcevich references from Research in Autism Spectrum Disorders, children with autism were found to be twenty-eight times more likely to experience suicide ideation than their typical peers. Because of this startling finding, the researchers of this study concluded, “All children with autism should be screened for suicide ideation or attempts because ideation and attempts are significantly higher than the norm and are present across the [autism] spectrum.”

Speculating on reasons why people with autism can be suicidal, Dr. Grcevich offers potential reasons. He notes that people with autism are more likely to be isolated socially and lack social supports; moreover, they are often victims of bullying. In addition, people with autism may experience problems with executive functioning of the brain. This may cause them to act impulsively, have difficulty in solving problems, and impair their ability to self-regulate their emotions. Furthermore, people with autism often fixate on specific thoughts and ideas, which may be the case in suicide ideation.

From our experience of raising a child who was diagnosed with autism at age four, obsessive-compulsive disorder at age eleven, and generalized anxiety disorder at age nineteen, I believe additional factors play a part in mental health issues reaching a critical stage in children and adults with autism. First, we had a great deal of trouble finding professionals who knew how to deal with autism. In addition, we discovered that few facilities know how to address autism and mental health issues. To add to the problem, insurance companies limit mental health care treatment, refusing to pay for a reasonable amount of time needed to stabilize a person in a mental health crisis. Furthermore, the unfair stigma of mental illness may prevent some parents from seeking help for their children with autism.

As parents who had to search and struggle to get our son the help he clearly needed, we know how important dealing with mental health issues in autism is. After discovering that our son’s aggressive outbursts that made him a danger to himself and others were triggered by severe anxiety, we knew that proper medication was necessary. Although we were heartbroken to have to hospitalize him in a psychiatric ward for weeks, we know that time of treatment was absolutely crucial to his well-being and are thankful that we found professionals who were able to help us through the crisis. While we would rather forget those turbulent times, we know that we must share our story in hopes that other parents would seek help for their children and know that they are not alone.

In concluding his article, Dr. Grcevich emphasizes the need for churches to support families whose children have autism, and I completely agree with him. However, in the absence of a church family who offers support, parents must remember that God will always support them through the trials of autism and mental illness and offer them hope for a future of healing and happiness. Though we carry scars from our battles, I know God has brought us through those struggles better and stronger and filled with faith and hope that Alex will continue to get better as a testimony to God’s goodness.

“From six calamities He will rescue you; in seven no harm will touch you.” Job 5:19

Sunday, October 8, 2017

Voice Perception and Autism

 
Last week Spectrum published a fascinating online article written by Nicholette Zeliadt regarding research on how voices of people with autism are perceived. [To read this article, please click here.] The article entitled “‘Tone’ of phrase may differ in autism, but meaning is clear” summarizes research by Dr. Noah Sasson and his colleagues at University of Texas at Dallas that was published in Autism Research on August 17, 2017. Noting that people with autism often use unusual speech patterns and have difficulty with social skills, the research examined how listeners perceive these differences. This study focused upon effects of “emotional prosody,” the cues that convey emotions and make speech different from written text, such as tone of voice and volume.

To test perceptions of speech patterns, the researchers had thirty men of average or above average intelligence­––15 typical men and 15 men with autism––make audio recordings of five phrases with five different ways of saying those phrases. These phrases, such as, “I can’t believe this” could convey a variety of emotions, depending on the tone of voice. The phrases were said with the following emotions: happy, sad, angry, interested, and neutral. Afterward, the tones were analyzed for volume, pitch, and how long it took to say them. The men with autism were louder, had greater pitch variety, and took longer to say these phrases with emotion, but were the same volume, pitch, and length in the neutral tone as the typical men.

Later, a group of individuals (22 people with autism and 30 typical people) listened to these audio recordings and identified the emotions conveyed by the prosody of each statement. Not surprisingly, the people with autism had more difficulty identifying the emotions conveyed by each statement. However, all listeners were better at correctly identifying the emotions conveyed by the speakers with autism, who used exaggerated volume and pitch. Despite their unusual prosody, the men with autism could clearly convey the emotions they were communicating to others.

While the typical listeners were able to identify the emotions the speakers with autism conveyed, they perceived their speech as less natural and formed unfavorable impressions of them. These negative reactions correlated with an earlier study this research team did in which they showed typical people videos of people with autism speaking. After watching these videos, the typical people indicated they were unlikely to want to interact with people with autism. However, when the typical people only read transcripts of what the people with autism said, they did not form these negative biases. Consequently, what the people with autism said was less important than their speech patterns, which made typical listeners quickly form negative first impressions of them. Moreover, the researchers found that the typical people’s negative perceptions of people with autism were quite strong and did not change with increased exposure; they understood what the people with autism were saying, but they could not get past the unusual ways they spoke.

After seeing the negative ways typical people react to how people with autism communicate, the researchers’ goal is to find ways to minimize negative biases against people with autism. They hope that the more typical people understand people with autism, the more positive their perceptions of people with autism might be. In addition, the decrease of bias could improve social experiences for people with autism as the likelihood for interaction with typical people could improve. The research team plans to do evaluations of people with autism and typical people getting to know each other in person to find traits that make positive judgments and interactions possible.

Ironically, people with autism are often said to have poor social skills, yet they often seem to lack the prejudices found in typical people that negatively impact social interaction. While Alex finds people’s voice qualities fascinating and likes what makes them unique, others may judge him negatively because of his halting speech and emotional prosody affected by autism. I have often said that Alex is very perceptive about people and is intuitively drawn to those he sees as kind; perhaps he senses the bias of those put off by his style of speaking. Fortunately, he doesn’t seem bothered by those who would rather not engage with him, and he simply gravitates toward those who do see past his unique way of speaking to the clever mind and pure heart he possesses.

As the mother of a young man with autism, I found the results of these studies disappointing that many people have prejudices against people with autism because of the way they speak. However, I can also objectively say that before I had a child with autism, I probably would have reacted the same way: uncomfortable with those who spoke in unusual ways. As a teacher, I witnessed how some typical students reacted negatively to their peers with autism and tried to teach them to be compassionate. Yet, human nature sadly sometimes causes us to judge those different from us as being less. Truly, I hope that the researchers can find ways for people with autism to interact positively with typical people to develop greater understanding. Not only will people with autism benefit from more opportunities to develop their social interactions, but typical people could also benefit from all they can learn from people with autism.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Sunday, October 1, 2017

Expressing Emotions

 
Recently, Alex’s behavioral therapist has been working with him on understanding and expressing his emotions appropriately. They use a system of colors to identify what he is feeling: green for calm and content, yellow for nervous, and red for frantic. This stoplight system seems to appeal to Alex as they discuss not only what might cause him to feel these different emotions but also how to cope when he enters the yellow and red zones.

For example, Alex indicates that he feels calm when he reads a book or watches television, but he becomes anxious if he’s worried about the stock market or thinks about losing money at the casino. (He’s only been to a casino twice and won money both times, but I guess this is a concern for him.) To ease his anxiety, his therapist has suggested that Alex should do things he enjoys and finds calming: reading books, watching television, and listening to music. When he becomes frantic, such as when he can’t find something, she recommends that he asks for help or talks to Ed or me to calm down.

Clearly, these strategies are working well as we have seen in the past week with situations that could have sent Alex into meltdown mode. With one of his medications reduced significantly and another taken away completely this summer because he has done so well managing anxiety, he has heightened sensory awareness. We notice him covering his ears for loud sounds, which he does not usually do, and his appetite has been off, probably due to increased sensitivity to tastes, smells, and textures. Since these medications were to ease his anxiety, we have closely monitored his emotions to make sure he would not be overwhelmed too much by the changes in his brain chemistry.

Fortunately, he has adapted quite well to the taking away of some anxiety medications. However, we have noticed that he does seem to have a wider range of emotions, which is to be expected and celebrated. Certainly, we did not want him to have his emotions flattened more than necessary. With the coping skills he has learned in behavioral therapy, he has gained control of his anxiety and learned to act appropriately, even when he’s not happy with a situation. However, sometimes these feelings take him a bit by surprise, even when he knows he’s entering the yellow or red zone.

On Monday evening, Ed and I had several errands to run, and Alex was happy to go along for the ride. Even though he had no particular interest in looking at picture framing hardware, he pleasantly accompanied us to five different stores, especially since he knew we were taking him to get an Italian ice afterward. At the last store, however, he was reaching his limit of patience. Somehow Ed had managed to get in the slowest check out lane, and I could see Alex’s patience being tested. I suggested that Alex and I wait near the doors so that we weren’t crowded in line. Still in the yellow zone, he was chatting with me, trying to remain calm but telling me he was worried, so I knew we needed to try something different before the red zone appeared. We walked back to the line where Ed was still waiting, and I took the items to the self-check lane while Ed and Alex went to the car to wait for me. Simply changing setting and knowing that he was about to receive his reward for patience––the Italian ice––allowed Alex to calm down and keep his anxiety from escalating.

On Thursday afternoon, in preparing for the arrival of Alex’s music therapist, I picked up one of Alex’s red composition notebooks from the floor and put it on the coffee table in another room to get it out of the way. A little later, I saw Alex walking from room to room, clearly searching for something. When I asked him if I could help him, he curtly told me no and continued looking for his lost possession. A few minutes later, I heard him yell downstairs, “You’re [meaning I’m] upset!” When I came to see what was wrong, he explained that he was looking for his red notebook, the one I had put away earlier. After reassuring him that I knew where it was, he was relieved, and I reminded him that he can always ask me for help if he needs it. On the other hand, I was proud of him for trying to find the notebook independently. Most of all, I was proud of him for verbalizing his feelings of frustration yet behaving appropriately.

Yesterday, we took him to a college football game, something he’d been eagerly anticipating all week. Because it was Homecoming Weekend, the stands were packed with people, much more crowded than usual. In addition, the speakers were blaring loud obnoxious rap music that seemed to bother Alex because he covered his ears several times. The final straw, however, was that the scoreboard was broken, and Alex relies upon those numbers, especially the game clock to keep track of the action. We had told him that we could leave at any time, but he managed to get through the first quarter. At the end of that quarter, I could see his anxiety emerging from the sensory overload. When I asked him if he wanted to stay or leave, he told me he wanted to leave but was concerned if that was okay. We assured him that he didn’t have to stay, and he seemed pleased we understood that he was overwhelmed by all the people, noise, and confusion. Again, we were proud of him for communicating what he needed to feel better without allowing himself to get too upset.

While it would be nice if every day were filled with only peaceful and pleasant things, we know that’s not realistic. As Alex experiences various situations and emotions, he will need to learn to cope with waiting, frustration, and sensory overload. Thankfully, he is adapting to these feelings and learning to express his concerns and needs so that we can help him find solutions to problems until he is able to navigate them on his own. Although we would wish for a life of only green times for Alex, we are pleased that he is figuring out how to cope with those yellow and red times that could overwhelm him by finding appropriate ways to deal with them. As always, we are grateful to God for all the progress Alex is making and for being able to witness just how far he has come.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Sunday, September 24, 2017

Wasted Worry

 
In May, Alex mysteriously changed his eating habits. Because he has always had a good appetite and a willingness to eat almost anything, we became concerned when he seemed to lose interest in eating foods he had previously loved. Even more concerning was the weight loss that accompanied this change of eating habits. Consequently, we took him to the doctor, who diagnosed him with thrush, yeast overgrowth in his mouth and throat that seems to plague Alex at regular intervals. Since his mouth and throat were sore, apparently only cool and smooth foods, such as coconut milk yogurt, Rice Dream ice cream, applesauce, and pureed fruit appealed to him. Moreover, he told us that some foods he had previously liked now tasted bad, which apparently was a side effect of the thrush.

After prescribing a week of the anti-fungal medication Diflucan, the doctor told us that if Alex’s appetite continued to be affected, he might want to do an abdominal CT scan to determine whether he may be having gall bladder issues. In addition, he wanted to see him again in a few weeks to monitor his weight and see if the thrush improved. The medication did help the thrush, but his appetite was still not back to normal. Fortunately, by encouraging Alex to eat foods that did appeal to him, he was able to gain back some of the weight he had lost.

When we returned to the doctor in June, he was pleased that Alex was doing better and gaining weight. Since Alex was improving, he didn’t think the CT scan was necessary, but he indicated that if Alex continued to have thrush outbreaks, he may want to refer us to an ear-nose-throat specialist who could better view what was going on in Alex’s upper digestive tract. While I was not thrilled with the possibility of Alex needing a scope of his upper GI tract, I trusted the doctor knew what was best for him and hoped that this test would not be necessary. In the meantime, he prescribed another round of Diflucan to address the residual thrush and wanted us to return in three months to check Alex’s progress.

Over the summer, Alex seemed to be getting better, as the signs of thrush improved. When Alex has thrush, his anxiety and OCD increase, and he also has acne breakouts and terrible dandruff. Fortunately, all of these symptoms subsided, and his appetite, while not back to normal, improved. Because he was doing fairly well, his psychiatric nurse practitioner took him off one anti-anxiety medication and reduced another. He adapted to these medication changes overall quite well, which was encouraging. However, he seemed to have some increased sensory issues, such as covering his ears when he heard loud noises. Perhaps his eating habits were affected, as well, with intensified tastes, smells, textures, and even sounds of foods. While we had seen some improvement with his willingness to eat a greater variety of foods, we saw a setback recently where he reverted to eating only the cool and smooth foods he preferred in May.

Knowing that we were taking him back to the doctor last week, I began to panic that the doctor would want more tests run on Alex. In case his eating habits were more mental than physical, I decided to try a new method: offering him a reward for eating. All summer long, we have been low key about his eating habits, not wanting him to feel anxious and not putting pressure on him. However, in trying to spare him medical procedures, I was willing to push him a bit to see if he might eat more. Last week, I told him that if he would eat his dinner, he could get an Italian ice at Fazoli’s for dessert.

The first two nights, the plan worked well, as he ate dinner and earned his reward. The third night, however, he became agitated trying to comply so that he could get the dessert he really wanted. The next night, he began shaking before dinner ever started, fretting about the task of eating, and I knew we needed to abandon this plan. Instead of pushing him to eat a variety of foods, I fixed him foods I knew he could eat, and he was much calmer. Apparently, his eating habits were not just a matter of stubbornness on his part, and I felt bad about pushing him to eat, even if I had his best interests at heart.

In the days before we took him back to the doctor on Wednesday, I fretted about what might be ahead of us, just as Alex had fretted about eating a few days earlier. As I worried about possible medical procedures Alex might need, or even worse, what terrible illnesses might be responsible for his lack of appetite, I knew I needed to pray and find peace. Whatever God had planned, He would see us through, just as He always has.

When Alex went to the doctor on Wednesday, the doctor was pleased with Alex’s weight gain and fortunately did not feel the need to run any tests. Unfortunately, he diagnosed Alex with another case of thrush, which would explain the decline in his appetite that had been improving a few weeks ago. The doctor also thought that the decrease in anti-anxiety medications could cause sensory issues that would impact his appetite, as well. He prescribed ten days of Diflucan followed by weekly doses to keep the thrush at bay and told us to call him in two weeks and let him know how Alex is doing.

Fortunately, this case of thrush seems much milder than the ones Alex had earlier, as his symptoms are less intense and don’t seem to be bothering him too much. Thankfully, we are already seeing improvements in just the few days Alex has been on the anti-fungal medication. We are also pleased with how the doctor is handling Alex and have confidence that he is doing what is best and genuinely wants to help Alex get well. While we hope and pray that Alex’s appetite will return to normal soon and that the thrush will disappear permanently, we know that God has a plan for Alex’s healing and that we need not worry about the details. Instead, we just need to wait and to trust that in the end everything will be all right.

“Don’t worry about anything; instead pray about everything. Tell God what you need and thank Him for all He has done.” Philippians 4:6

Sunday, September 17, 2017

The Inflamed Brain

 
Obsessive-compulsive disorder is defined by the Mayo Clinic website as a common condition affecting more than 200,000 people in the U.S. per year. Those with OCD, as it is more commonly known, tend to focus on thoughts and fears that become obsessions and then attempt to deal with these upsetting thoughts by engaging in compulsive behaviors.  Statistics indicate that OCD affects approximately two percent of the general population. However, various studies show that the rate of OCD ranges from eight to thirty-three percent of those with autism––much higher than the general population.

When Alex was eleven, he was diagnosed with OCD and began taking the SSRI medication Prozac to alleviate the symptoms. In his late teens, Prozac suddenly stopped addressing his OCD symptoms, leading to extreme anxiety, and he was placed on another SSRI, Zoloft, which he currently takes daily. His primary obsession is time, and he needs to know what time it is at all times and requires a watch and schedule and calendar to keep track of time. Although medication and behavioral therapy have helped ease some of the symptoms of OCD, such as frantically searching for a clock every few minutes, he still can become unnerved if his schedule changes or if he can’t find his wristwatch.

Because of the link between autism and OCD, I found a recent article on OCD especially interesting: “Brain Inflammation Discovered in Those With OCD” published online in Neuroscience News.com on June 21, 2017. [To read this article, please click here.] This article focuses upon research published on the same date in the journal JAMA Psychiatry. The senior author of the study, Dr. Jeffrey Meyer, is the Head of the Neuroimaging Program in Mood and Anxiety at the Centre for Addiction and Mental Health (CAMH) Campbell Family Mental Health Research Institute in Canada.

This study used PET scans of the areas of the brain known to function differently in OCD, and dye was used to measure the activity of immune cells (microglia) found in inflammation. This research discovered for the first time that brain inflammation is much higher in people with OCD than in those who do not have OCD. Specifically, those with OCD had greater than 30% higher brain inflammation. Noting the significance of this novel research, Dr. Meyer stated: “This finding represents one of the biggest breakthroughs in understanding the biology of OCD and may lead to the development of new treatments.”

While inflammation and swelling help the body to heal from infection and injury, this immune system response can also be harmful. In addition to discovering the link between brain inflammation and OCD, Dr. Meyer also found in an earlier study that brain inflammation is elevated in people with depression. Moreover, some researchers have suggested that autism is linked to inflammation of the brain and nervous system. Consequently, the link between mental health disorders and brain inflammation indicates the need for new methods and medications to treat these conditions.

Currently, the most commonly used medications for OCD include SSRI medications to ease depressed mood and anxiety, anxiolytic medications to relieve anxiety and tension, and antidepressant medications to prevent and relieve depression and elevate mood. However, these current medications do not help one third of those dealing with OCD. This study indicates that additional research needs to be done to develop low-cost tests, perhaps in blood markers, to identify those OCD patients with brain inflammation who would respond to treatment addressing the inflammation. Additionally, the study suggests that medications used in other disorders for brain inflammation might be helpful in treating OCD.

Another important discovery in this research is the connection between brain inflammation and stress response. Approximately ninety percent of those with OCD engage in compulsive behaviors in attempts to lessen their obsessions. Those who tried to avoid engaging in compulsions experienced great anxiety and were found to have the highest levels of inflammation in one brain area. Consequently, stress appears to play a role in brain inflammation. As Dr. Meyer notes, “Work needs to be done to uncover the specific factors that contribute to brain inflammation.”

Although more research needs to uncover sources and potential treatments for brain inflammation, this groundbreaking work by Dr. Meyer and his associates gives real hope for those struggling with OCD, depression, and other conditions impacted by neuroinflammation, such as autism. Not only might they find better ways to treat the inflammation in the brain that impacts thoughts and behaviors, but they also may be getting close to finding the causes of the inflammation, which may eventually lead to a cure. As I follow research like this and continue to pray for a cure for autism, I wait with anticipation for the day that Alex will be completely healed.

“Lord, my God, I called to You for help, and You healed me.” Psalm 30:2

Sunday, September 10, 2017

The Mighty Pen

 
Like me, Alex is an avid list maker. While I typically write lists of things I need to do or buy, Alex makes lists of dates, facts, and numbers he wants to remember. Over the years, his lists have taken varied forms: individual pieces of paper scattered throughout the house with his notes, legal pads filled with jotted assorted information, and his current preference, classic marble cover composition books filled with his mostly illegible scrawl. Certainly, the composition books are a neater way to store his various lists, and I prefer them to some of the other alternatives he’s chosen at times, including using his bedroom walls to record dates or his leg as a young boy to record pi digits because he couldn’t find paper, as he told me. Through it all, he has relied upon his trusty Bic ballpoint pens that will write on nearly any surface, as we have discovered.

Although Alex has his own iPad and Chromebook, he still makes his lists the old-fashioned way, writing them by hand. Even though he can type quite rapidly and accurately, he chooses the more labor-intensive pen and paper method. Because of his poor fine motor skills and hand tremors caused by medication to ease anxiety, Alex’s handwriting is barely legible. A casual reader could make out some numbers and a few letters, but overall, Alex’s writing looks more like an earthquake seismograph than anything else. Apparently, he can read most of what he writes, though, and perhaps he likes that only he can decipher what he’s recorded in his notebooks.

As a student who learned to take notes by hand because computers were not available, I figure that my preference for writing lists by hand shows my age––someone who grew up before the technology revolution of this century. Although I’ve tried taking notes on my iPad or Chromebook or laptop, I still prefer to write my notes by hand, often edited with crossed out words or arrows not needed in computer-generated text. Besides the familiarity of doing this task in the way I was taught to do it, I’ve also suspected that I remember things better that I have written by hand.

As I always told my students, writing notes sends various inputs to the brain: hearing what was said, seeing what was written, and the feeling of the hand motion in writing. As students began using Chromebooks to take notes, I noticed that they seemed to be disconnected from what they were typing, and I questioned whether they were remembering information as well as they did when they wrote notes by hand. Recent research confirms my suspicions that writing notes by hand is more effective than typing them on a keyboard.

In an online article in Scientific American published on June 3, 2014, psychology professor Cindi May describes research regarding the impact of writing notes by hand upon memory and depth of understanding. This article, “A Learning Secret: Don’t Take Notes with a Laptop,” explains research at UCLA and Princeton University by Pam Mueller and Daniel Oppenheimer. [To read this article, please click here.] In their studies, they compared how students performed on tests, depending on whether they took notes by hand or on a computer.

Because the students could type faster than write by hand, those who used computers took more notes, often copying verbatim what was said. While this process may seem advantageous, the researchers found that this method resulted in less retention of the material because it was a mindless task. Even though writing notes by hand is slower, the students had to “listen, digest, and summarize” the material presented, leading to better retention and comprehension of the material. As Professor May notes, “While technology allows us to do more in less time, it does not always foster learning.” She goes on to state that learning is more than simply taking in and giving out data. Emphasizing the value of taking notes by hand, she concludes, “If we want students to synthesize material, draw inferences, see new connections, evaluate evidence, and apply concepts in novel situations, we need to encourage the deep, effortful cognitive processes that underlie these abilities.” In other words, to develop higher levels of thinking, the slower and lower technology of writing by hand appears to be the best way.

As I watch Alex sitting with one of his many composition notebooks, pen poised to write down things that interest him, I realize that he knows the best way to learn and remember. Perhaps his amazing ability to remember statistics, dates, and facts is related to his insistence upon jotting them in his own handwriting, making meaning of seemingly random details and building connections in his mind. Moreover, he rarely consults these notebooks as reference materials, so I suspect that just the act of writing what he wants to remember achieves precisely that purpose for him because he does have a phenomenal memory of those things he has seen and heard and written down.

Although I want to help him develop his actual handwriting skills to make them more legible not only to others but also to Alex, I don’t want to mess with success. Apparently, his hieroglyphics have meaning to him, as evidenced by his ability to remember what he has written. In his intuitive way, he has discovered that the best way to make sense of a world that overwhelms him at times is to grab a notebook and a Bic pen and jot down data that he wants to remember. Moreover, he maintains his love of learning and has discovered the best way to develop the amazing mind God has given him. As Alex’s mom and teacher, I’m quite proud of my prized pupil.

“Write down what you have seen––both the things that are now happening and the things that will happen.” Revelation 1:19

Sunday, September 3, 2017

Picky Eater

 
For nearly four months now, Alex has been limiting himself to what I have dubbed “the cool and smooth diet.” Back in May, he had a mild virus that diminished his normally healthy appetite, and then a strong bout of thrush, yeast overgrowth in his digestive system that lasted weeks, made his mouth and throat sore, causing him not to want to eat. After two doctor visits and three weeks of antifungal medication, the yeast seems to be tamed, but Alex still has not returned to his normal eating habits. Instead of eating a wide range of foods that he usually enjoys, he prefers coconut milk, Rice Dream non-dairy “ice cream,” nondairy yogurt, applesauce, and pureed fruit. Along with the cold and smooth diet, he takes nutritional vitamin, mineral, and protein supplements to ensure he gets what he might be missing in this limited diet.

Although nearly seventy percent of children and adults with autism are often dubbed picky eaters, Alex has always had a good appetite and been willing to try a variety of foods. While some children with autism limit themselves to the “white diet” consisting of bread, crackers, pasta, and french fries (often because their bodies crave the glutens in them which may be bad for their digestive systems), Alex would eat a wide range of fruits, vegetables, meats, and seafood, as well as gluten-free and dairy-free carbohydrates. We considered ourselves fortunate that the only three foods he did not like as a child were broccoli, mashed potatoes, and popcorn. As he matured, he even decided that he liked broccoli and mashed potatoes, leaving only popcorn as the food he detests because it’s “too salty” (although I suspect its texture is to blame, as well).

In an article entitled “The Picky Eater” found on the Autism Research Institute’s website, Kelly Dorfman addresses four possible causes for picky eating often found in autism and other developmental delays. [To read this article, please click here.] First, she describes sensory issues and poor oral motor skills that may make eating difficult. For example, for those with sensory issues, smells, tastes, and textures of certain foods may be overwhelming. In addition, poor oral motor skills may cause children to choke or gag, making eating challenging for them. To overcome these problems, she recommends reducing anxiety, using an electric toothbrush to desensitize the mouth, and strengthening oral skills by using a straw to drink, all of which we have done with Alex over the years.

Next, she explains the role nutritional deficiencies play in picky eating. Essentially, picky eating can lead to malnutrition, which can lead to even greater reduction of appetite and even more nutritional deficiencies, creating a vicious cycle. To remedy this, she recommends giving vitamin and mineral supplements to address any nutritional needs not being provided by a limited diet. From the time he was little, Alex has always taken vitamin and mineral supplements, and we are fortunate that he has been willing to swallow pills, making giving him these supplements easier.

Another issue addressed in this article is the role of digestive problems that often plague people with autism. She explains that digestive issues can cause a child to feel uncomfortable and make them want to avoid eating. Consequently, she recommends diagnosing any digestive problems through a Comprehensive Digestive Stool Analysis and treating inflammation with proper supplements. When Alex was younger, we had this test run and discovered that he had issues with yeast overgrowth in his digestive tract, which has plagued him over the years. Whenever he has yeast flares, we treat them promptly with antifungals, but we must always be on the lookout for the symptoms that show his system is not in balance. Also, we have repeatedly asked him if his mouth, throat, or tummy are bothering him, and he insists that he feels fine.

Finally, she explains the role of medication side effects in appetite. For example, stimulant medications often given for ADHD can diminish appetite. If the medications are necessary, parents may need to be creative about getting their children to eat, providing the most nutritional meals at breakfast and afterschool when the medication has less impact on the appetite.

Although Alex is not on stimulants, I do suspect that medication may be playing a role in his recent changing eating habits. Because he has been doing so well in managing anxiety, one of his medication levels was lowered significantly, and he was weaned off another medication completely. While he has done quite well with these medication changes, remaining calm and content, I think the reduction of depressant medications in his nervous system could mean that the nerves in his mouth are reawakening. Perhaps textures, tastes, and smells are a bit overwhelming to him, so he is choosing soothing foods, hence ‘the cool and smooth diet” he’s adopted the past few months.

Moreover, I have noticed that he has also become somewhat sensitive to sounds, something he had overcome many years ago through auditory training at home with the EASe listening program. He prefers that the television be turned to a lower volume lately, and we have seen him cover his ears at times when noises bother him. Perhaps the sound of chewing is much louder to him than previously, and he is choosing foods that make no noise when he eats them. A recent trip to the dentist where his teeth were checked and found to be healthy and cavity-free reassured us that dental pain is not behind his current preferences for smoothies and smooth foods. I think that he is avoiding noisy foods right now that bother him.

While Alex’s changes in appetite have concerned us a bit, he seems healthy and happy, and he is maintaining his weight, despite changes in his eating habits. I really believe that increased sensitivity first triggered by thrush and then continued with medication changes that made him more aware of textures, tastes, and smells as his nervous system became more alert, have been responsible for his new eating habits. In addition, we know that Alex is very intuitive about what his body needs, and his wanting to eat kiwi, strawberries, bananas, peaches, and apricots daily instead of occasionally may be because he needs the nutrients in those specific fruits. He will see his primary care doctor again in a few weeks, and we will see what his opinion is regarding Alex’s current eating habits.

In the meantime, we keep offering Alex other foods we know he has liked in the past, hoping that he may be willing to eat them again. In addition, I try to make eating fun for him, offering him a plate of his current favorite foods I’ve dubbed—in honor of one of his favorite television game shows—“The Wheel of Luncheon,” which makes him grin and cooperate with eating, even when he thinks he’s not hungry. Most of all, we pray that God is restoring Alex’s health and guiding us to do whatever we need to do to help him be healthy and happy. Moreover, we know, despite our concerns, that this phase, like so many we have seen over the years, will eventually fade, and Alex will be fine.

“The Lord will accomplish what concerns me; Your lovingkindness, O Lord, is everlasting; Do not forsake the works of Your hands.” Psalm 138:8

Sunday, August 27, 2017

The Solar Eclipse

 
“Why, who makes much of a miracle?
As to me I know of nothing else but miracles…
To me every hour of the light and dark is a miracle,
Every cubic inch of space is a miracle,
Every square yard of the surface of the earth is spread with the same,
Every foot of the interior swarms with the same…
What stranger miracles are there?”
~Walt Whitman, “Miracles”

Last Monday’s solar eclipse dominated the media not only for the day of that rare event but also for weeks leading up to this phenomenon. As people searched for safety glasses to allow viewing of the eclipse and schools determined best policies to protect students from permanent eye damage and people made plans to travel to places where the eclipse was in totality, Alex took all the excitement in stride. After all, he had known this eclipse was coming for quite a while.

Among the various occupations Alex has discussed pursuing over the years, one at the top of his list is astronomer. Ever since he was a little boy, he has been fascinated by the constellations and planets and everything else in the galaxies. Carefully studying the many astronomy books on his bookshelves, Alex has learned a great deal of information about the solar system over the years. This knowledge usually comes forth whenever a category appears on Jeopardy dealing with astronomy, and Alex typically knows all the details about the topic and proudly shares those facts that he has stored over time.

For several years, any time the year 2017 would be mentioned on the news, Alex would always say, “That’s a solar eclipse year.” I knew he had read that somewhere but didn’t give it much thought until recent weeks when the solar eclipse seemed to be a major topic of interest for many, not just amateur astronomers like Alex. Of course, he was delighted to see the various features and articles on the television news and in the newspapers regarding the eclipse, and he studied this information with the same intensity that he has always had when learning about the solar system.

Last Sunday evening, a professor of astronomy at Valparaiso University offered a lecture to the public about solar eclipses, and we knew this was right up Alex’s alley. As the professor discussed all the dates and statistics and mechanics behind solar eclipses, some in the audience checked their phones and shifted in their seats, perhaps overwhelmed by all this data. Alex, however, sat attentively and enthusiastically for the entire hour, clearly hanging on to every word this expert offered. Many in the audience seemed most concerned with how they could view the eclipse, even asking rather questionable questions as to whether they could look through industrial strength garbage bags or Ritz crackers to observe the eclipse safely. However, Alex didn’t seem to be as concerned about viewing the eclipse; he seemed to be content just knowing that this event that he had anticipated for years was finally going to happen.

One of the points that resonated most with me during the lecture was that the profound size differences between the sun and moon as well as the vast distances between them makes the lining up between these two celestial objects to create a total solar eclipse miraculous. While the media has been describing this eclipse as “a wonder of nature” or “a wonder of science,” this professor speaking at a Christian university proclaimed the eclipse as a “wonder of God.” Indeed, I appreciated that he gave proper credit to the creator of the universe.

On Monday, the day of the eclipse that many had anticipated, Alex and I watched the hoopla on television, more interested in seeing the video of the actual eclipse than watching people’s reactions to this rare event. Without eclipse glasses because I didn’t trust their complete safety and most places were sold out of them anyway, we simply watched the darkness creep in and creep out as the moon passed in front of the sun. Standing on our back deck with our heads down, making sure we would not be looking at the sun, we noticed how distinct our shadows were at that moment. Using old-fashioned technology, I showed Alex the progress of the eclipse through a pinhole viewer I’d made from two pieces cut from poster board. I didn’t want him to miss out on this event he’d patiently awaited.

While Alex appeared pleased to observe the eclipse on television and on the poster board on our deck, he wasn’t really as excited as many people seemed to be, which surprised me because he finds astronomy more fascinating than most do. While many people described being awed and amazed, Alex just seemed content to be an observer. Perhaps Alex’s scientific knowledge along with his strong faith in God leads him to be less surprised about what happens in nature than most people are. He knows what causes solar eclipses, when and where they will occur, but more importantly he knows who is responsible for these miracles and trusts that God’s timing is perfect.

While many people are already talking about the next solar eclipse and even making plans to travel to places of totality, Alex calmly waits for that astronomical event in the future, knowing that it will arrive as expected. His constant faith keeps him grounded, even as he considers the stars and the heavens. When I ask him what he thinks will happen in the future, he often wisely reminds me, “Wait and see.”  I’m sure that whenever people mention 2024, Alex will be telling us, “That’s a solar eclipse year.” Over the next seven years, I know that many changes will happen and that Alex will continue to make progress. Together, we will wait and see what God has planned.

“For the Lord is God, and He created the heavens and earth and put everything in place. He made the world to be lived in, not to be a place of empty chaos. ‘I am the Lord,’ He says, and there is no other.'” Isaiah 45:18

Sunday, August 20, 2017

More Than a Mom


After thirty-three years of teaching middle school English, I officially retired last Tuesday. One of the perks of being retired is being able to have breakfast every week with a wonderful group of other retired teachers from my school. As one of the group arrived late, he explained that he had to drive his grandkids to school because his daughter and son-in-law had to be at work early, and he offered to chauffeur their children. He remarked that no one prepares us for how parenthood really is. Noting that television portrays retired people as being in their golden years and enjoying freedom, he commented that in real life children continue to need their parents’ help, and our responsibilities as parents never really end.

Sitting next to one of my closest friends who like me has an adult child with disabilities, we shared a knowing smile. While all parents have ongoing concerns about their children, even when they are adults, our children require our care in ways most people never consider. Since our sons cannot drive, we must take them anyplace they need to go. Moreover, we manage their finances, appointment schedules, medications, and nutritional needs––to name but a few of our responsibilities––and we are their primary advocates who speak up for them. Despite all the tasks we still must do for our sons and our concerns for their futures, she and I agree that our sons bless our lives immeasurably.

As Alex’s mom, I have taken on roles I never imagined I would need to do before we realized he had autism. In addition to the typical mom roles of teacher, nurse, cook, chauffeur, housekeeper, and assorted others, I have also become an amateur pharmacist, psychologist, speech therapist, occupational therapist, barber, and most importantly, his advocate. My job is to make him the best person he can be, and I take my responsibilities quite seriously.  Because I know him so well and love him so much, I know how important communicating clearly with the professionals who work with him is so that they, too, can help him reach his potential. Furthermore, I am grateful to have the support of others working with Alex, bringing out the best in him, and I want to do anything to make their jobs easier.

Because of my belief in the need for parents to assist those who work with their children, I found a blog article I read the other day rather surprising. Entitled “I Just Want to Be My Son’s Mom, Not His Private IEP Case Manager,” the anonymous author describes herself as the mother of a teenage son who has “significant issues with social skills.” [To read this article, please click here.] In the article she describes an incident in which her son’s teacher emailed her regarding an outburst her son had in class. She quotes a statement from the email that frustrated her terribly: “We’d like you to come in to discuss your son’s behaviors and hear your ideas for how we might best help him.” Apparently, after years of advocating for her son, this was the last straw, as far as she was concerned.

In response to the school’s request for a meeting, she describes her reaction: “I felt like I was being asked to be his case manager, teacher, social skills coach, and professional consultant.” Further, she states, “This wasn’t a job I asked for…But I didn’t want it any more.” She complains that she doesn’t “get to have fun” with her son or “spend quality time watching dumb TV shows when I’m busy troubleshooting problems that come up.” Therefore, she makes a decision: “So when I went to meet with them about the latest incident, I quit.” Consequently, she tells the staff at her son’s school that they would have to solve the problems without her help because she’s just going to be his mother.

Perhaps her son’s school has been less than helpful over the years, leading to her decision to turn things over to them instead of being a more active participant in her son’s education. Nonetheless, the email the school sent seems to be reaching out in an effort to collaborate in helping her son, recognizing that she knows him best. She may not have wanted the job of teaching her son’s teachers how to help him, but it’s in his best interest (and, therefore, hers) to educate them how to educate him. She states that she would continue to be his advocate, but part of being an advocate is providing strategies to others to bring out the best in a child.

Maybe she will reconsider the consequences of her decision. Certainly, all parents feel overwhelmed occasionally, and being the parent of a special needs child brings caregiver fatigue that can make one want to quit at times. However, our kids, even our adult kids, need us to be resilient and tenacious. During those moments when we wonder how we can accomplish all we’re expected to do, we need to pray for strength and patience and peace. With God’s grace, we can find the resources and energy needed to continue our most important task in life: helping our children live their best lives.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, August 13, 2017

Meltdowns Vs. Shutdowns

 
Although many people are aware of meltdowns in autism, the concept of shutdowns in autism may be less known. In a meltdown situation, the child with autism experiences sensory overload and may become emotionally distraught. While this behavior may look like a temper tantrum, the child is not trying to exert control and get his or her way; the child is out of control and feeling overwhelmed. Similarly, in a shutdown, the person with autism is in a stressful situation and responds with behavior that may be misinterpreted. While some may think the child is simply avoiding an unpleasant or difficult task, the shutdown behavior is actually a physical response to certain triggers.

Until yesterday, when I read a fascinating online article entitled “Shutdowns and Stress in Autism,” I was not aware of this behavior commonly found in adults and children with high functioning autism. However, after reading this study by Ingrid M. Loos Miller and Hendricus G. Loos, I realized that Alex exhibits shutdown behaviors at times. [To read this article, please click here. Thanks to the Facebook page “Regarding Caroline” for sharing this article.]

Describing a case study of a young girl with autism who was exhibiting shutdown behaviors at school, the authors note that her behaviors followed a predictable pattern triggered by social stress when she was expected to perform difficult tasks. She would first look away, then rub her eyes, keep her eyes closed, and then become limp, and finally would fall asleep for ten minutes to two hours. The article also lists more than thirty behaviors in Appendix 3 associated with shutdowns, including staring, yawning, asking to rest, and refusing to comply with verbal requests, all of which I have seen Alex do sometimes when he had to do something he found difficult.

The authors note that settings for these shutdown behaviors include school, play dates, meeting strangers, and conversations with adults that asked the child to recall recent events and to describe what happened and what the child liked. Specifically, the authors observe, “…the most stressful events are those in which the child is expected to ‘perform’ using language.” While these stressful situations may cause shutdown behaviors, the authors note that “stress instability” may also cause meltdowns, such as sensory overload or aggressive outbursts.

Because of the difficulties with eye contact, social skills, and language, children with autism may have social phobia, the authors suggest. When an adult pressures a child with autism to respond verbally to a difficult question, the child exhibits an abnormal physical response to stress. As the stress hormones rise, the child shuts down, allowing the body to recover. As the authors explain, sustained high levels of stress hormones can damage the brain, impairing verbal memory, social function, and sensory processing, and causing language deficits. In addition, rhythmic motion, such as rocking, may be needed for calming. All of these issues are associated with autism, perhaps because stress hormones have impacted the brain negatively.

While children with autism are often encouraged to work through their stress, this method is not helpful, according to the authors. These children often remember other stressful events in their lives, and a vicious cycle occurs. Instead, the authors recommend low stress approaches. For example, adults may need to be more flexible in dealing with a child who is experiencing stress. To help control social pressures, adults should help the child focus on the positive, give the child more time to respond, and allow the child to work alone. Social stories may also be effective in dealing with stress. The child may also need to take breaks to stretch, to take deep breaths, or to rest. In addition, breaking down tasks into smaller parts may be easier and less stressful for the child.

In Appendix 2 of the article, the authors have collected information from adults with autism regarding shutdown behavior. For instance, these adults describe feelings associated with a shutdown: “suddenly very sleepy,” “confused,” “like a panic attack,” and other similar details expressing their physical reactions to overwhelming stress. Further, they note that being told to “get over it” or having to continue in the stressful situation makes it worse. Instead, they need quiet time alone to relax––anywhere from a few minutes to over an hour, depending on the severity of the stress.

Perhaps the most critical point the authors make in this article hinges on what a person with autism needs to cope with stress. First, the person must recognize the signs of stress, such as suddenly feeling fatigued. Next, the person must learn strategies to help reduce stress, including taking a break and being alone. This ability to “self-manage,” the authors assert, is a “pivotal skill” needed in life.

What I found most interesting in this article is gaining understanding why Alex sometimes suddenly becomes very tired during conversations. Clearly, he is in shutdown mode. The strategies his therapists have taught him for coping with anxiety mirror those suggested in this article. As he has matured, he often prefers to be alone to deal with stress, and with an opportunity to go to another room and be quiet, he quickly recovers and can rejoin the conversation.

Hopefully, this information regarding shutdown behaviors will become more widely known to parents, therapists, and teachers who work with children and adults who have autism. By understanding situations that trigger shutdowns, the physical reactions, and ways to help people with autism cope with stress, those who work with and care about children and adults with autism can teach them tools to deal with things that overwhelm them, allowing them to manage stress and to experience life to the fullest.

“Joyful is the person who finds wisdom, the one who gains understanding.” Proverbs 3:13

Sunday, August 6, 2017

A Filled and Fulfilling Week

 
Last week was a busy one filled with appointments for Alex, yet thankfully everything went quite well. On Monday, his behavioral therapist had switched his usual Tuesday appointment because she was going out of town the next day and wanted to see him before she left. Even though Alex is not fond of having his regular schedule changed, he adapted nicely and had a good session with her. In addition, she and I discussed his behavior plan in depth, noting the progress he has made in the five years he’s been in behavioral therapy and specifically the four years she has been working with him. As we talked about how the frequency, intensity, and duration of anxiety attacks have decreased over time, both of us were pleased to note how well Alex handles anxiety now, using the coping strategies he has learned in therapy. Not only are we pleased that Alex is less anxious and can deal with upset much better, but we’re also thankful that he has such a devoted and caring behavioral therapist who celebrates his successes along with us.

That same afternoon, Alex had his regular six-month appointment at the dentist to have his teeth cleaned and checked. Unlike many people who dread going to the dentist, Alex actually looks forward to his visits. Fortunately, he had a very good pediatric dentist when he was little who made going to the dentist a good experience, and he continues to have a positive outlook as an adult. A few years ago, we started taking Alex to our family dentist and have been pleased with how well he has adapted. His dental hygienist is especially sweet and patient, and she brings out the best in him by explaining everything she is going to do and praising him for being cooperative. As the dentist checked his teeth, we were pleased that Alex has no cavities and would not need to come back until his next regular check-up in six months. As a nice surprise, the other dentist in the practice who sees Alex more often and who has filled cavities in his teeth made a special point to come say hello to Alex and see how he was doing. Not only are we pleased that Alex likes going to the dentist and received a good report, but we’re also thankful that the warm and friendly staff take such wonderful care of him.

On Wednesday morning, Alex had an appointment to see the nurse practitioner who oversees his anxiety medications. Although we were supposed to see her in June, a schedule mix-up caused him to become anxious, and we had to reschedule. Although I was concerned that Alex may not be happy about getting up early to see her, the appointment was the first one of the morning, which meant we didn’t have to wait. Despite being somewhat sleepy, Alex was good natured, especially when he saw that she had a scale in her office and was happy to be able to weigh himself. Although most people dread weighing themselves at the doctor’s office, for Alex, this is the highlight of the appointment. As we discussed how Alex was doing on the medications, he was patient and calm. Because he is doing well, she plans to take him off one medication completely, and she doesn’t need to see him for another six months. Not only are we pleased that Alex handled this early morning appointment well, but we’re also thankful that he is making such good progress that he doesn’t need as much medication to keep him calm.

On Wednesday afternoon, Alex’s peer companion came to “hang out” (as she calls their sessions) with him for the last time this summer before she returns to her full-time job as a special education aide. Even though he was disappointed that he won’t see her for a while, they enjoyed their afternoon together watching a movie. As we discussed possible plans for her to spend some weekend evenings with Alex in the future, he seemed happy that he won’t have to wait until next summer to see her. After he said goodbye to her and headed off to his room, she told me, “I just love your son!” Not only are we pleased that Alex dealt well with knowing he will miss seeing his friend for a while, but we’re also thankful that we found such a kind and caring young lady to spend time with him.

On Thursday, he met with his music therapist for their regular weekly session. Because Alex has been sick with thrush a good part of the summer, he hasn’t always been his best during music sessions. At times he has been fatigued, and other times he hasn’t wanted to sing, probably because his mouth hurt from the thrush. However, this week, he had a terrific session in which he was focused and engaged. At one point his therapist came to ask me if Alex could have a drink; he was delighted that Alex nicely asked him instead of running to ask me. Alex was also enthusiastic about watching music videos on his therapist’s phone prior to singing the songs, and his therapist thinks he’s stumbled on a good way to preview the songs. Since I could actually hear Alex singing in another room, I think he’s right. Not only are we pleased that Alex continues to make progress in music therapy, but we’re also thankful that his music therapist brings out the best in him and celebrates even seemingly small steps forward, knowing that they lead to larger leaps.

While we were a bit concerned how Alex would handle a week packed with appointments, this week turned out much better than we anticipated. He fully cooperated with all the various people who worked with him, and their praise and encouragement made him want to do his best. Consequently, not only are we are thankful to God for the progress Alex continues to make, but also for the outstanding professionals we have been blessed to work with, helping him to be healthy and happy.

“The Lord has done great things for us, and we are filled with joy.” Psalm 126:3

Sunday, July 30, 2017

Quarterly Meeting

 
Last week, we had our regular quarterly meeting with Alex’s support team of professionals: his case manager who oversees his budget, a representative of the company who provides respite care, his behavioral therapist, and his music therapist. These meetings are similar to case conferences or annual case review conferences to discuss IEPs for students in special education except that they are held four times per year in our home.  Even though we have become accustomed to how these meetings proceed and truly like all of the people who work with Alex, I always wonder ahead of time what topics might arise and how Alex will react. From his standpoint, sitting through those hour-long meetings must be difficult. Not only does he have to listen to everyone talk about him, but also he’s the center of attention who must answer questions, which has to be difficult for him. Nonetheless, he usually takes these meetings in stride and cooperates nicely. This meeting was no different.

Because Alex had been battling thrush during the past quarter, he has not made the progress we would have liked this summer. The yeast infection has made him tired, but thankfully, not irritable, as it often does. He has not felt up to going places as much as usual, and he has preferred a more relaxing summer of watching baseball games on television and reading. Usually, the case manager will ask what new things Alex has done, seeking to find what progress he has made in trying new activities, but we didn’t have much to offer. However, everyone showed understanding that he has not been feeling well, and his therapists praised his progress in spite of suffering from illness. In fact, this meeting was one of the most positive ones we’ve ever had, which was a nice surprise.

The first person to arrive was the representative of the company that provides respite care for Alex. We had not met this woman before, but she was very friendly. When Ed introduced Alex to her, he made a good first impression by saying, “Nice to meet you” and giving her a handshake with the correct hand. (Nine times out of ten Alex will offer his left hand instead of his right hand for a handshake.) I only wish that his behavioral therapist had been there to see how well he put into practice the social skills she has worked on with him. Clearly, the meeting was off to a good start.

Later, his behavioral therapist explained that our Fun Friday sessions in which she and I take Alex out into the community had been less frequent this summer due to her busy schedule. Nonetheless, she described our recent return to our local Burger King, where the friendly staff always greet Alex warmly and treat him kindly. When we arrived there, one of the ladies immediately came to talk to him, telling him how much she’d missed him. Over the counter she extended her hands, which Alex took hold of, essentially a hug between old friends. Another lady who works there came over to our table to greet Alex with affection, making him feel welcome. As Alex’s mom, I find their kindness toward my son endearing, and I think they find his joy in seeing them, shown by a wide smile and a shudder indicating happiness he can’t contain, endearing. Despite his difficulty with communication and social skills, Alex is making progress and enjoys interacting with people who reach out to him with kindness.

In another anecdote shared during the meeting, his music therapist told of a session where Alex was clearly fatigued from the thrush and needed to end the session early. Although I appreciated his music therapist’s being understanding, I told Alex that he needed to finish the session properly, meaning that he needed to sign the therapist’s time sheet and thank him. Instead, he suddenly burst out singing the goodbye song, which is always the last song they sing in music therapy sessions. His therapist and I were surprised and pleased that he was willing to sing the song unprompted, a cappella, and solo. After Alex finished singing, his therapist grinned and said, “That works for me!” Once again, Alex showed progress by completing most of the session even though he didn’t feel well and by ending that same session literally and figuratively on a high note.

As Alex’s support team chatted with our family and each other in a relaxed and friendly way, I was reminded how blessed we are to have such wonderful people working with our son. For years, Ed and I did our best to provide for Alex’s needs and searched for people who could help him overcome the obstacles of autism. However, God provided the services Alex needs now and sent people with talent and expertise to help. More importantly, these people have genuine caring and affection for Alex, and like us, they want him to be the best that he can be. With all of us behind Alex guiding and supporting him, he will continue to develop skills he needs in life and to reach his full potential.

“You guide me with your counsel, leading me to a glorious destiny.” Psalm 73:24

Sunday, July 23, 2017

"Do This to Remember Me"

 
Although I was raised as a Protestant, I often find my beliefs and values align solidly with those of my devout Catholic relatives and friends. In the Christian Disciples of Christ denomination in which I was baptized, emphasis is placed upon the rite of communion, which is celebrated weekly. One of the beliefs I admire most about the Disciples of Christ is the ecumenical stance on communion, inviting all who profess belief in Christ to partake in communion, not just those who are members of the church, emphasizing that Christ offers the invitation to commune with Him and those who believe in Him.

In I Corinthians 11:23-33, Paul offers directives for communion based upon what he “received from the Lord himself” that continue to guide Christian churches today. He describes how during the Last Supper, Jesus broke bread and proclaimed, “This is my body, which is given for you. Do this to remember me.” Then He took the cup of wine and said, “This cup is the new covenant between God and his people––an agreement confirmed with my blood. Do this to remember me as often as you drink it. For every time you eat this bread and drink this cup, you are announcing the Lord’s death until he comes again.”

Clearly, the significance of this commemoration means that all believers should be included. However, a recent directive by Pope Francis would exclude many Catholics from participating in this sacred rite of communion. According to Vatican Radio, the Pope requested that a letter be sent to Diocesan Bishops regarding appropriate bread and wine for the Eucharist; this letter specifies that gluten-free bread may not be used for communion. To quote this document, “Hosts that are completely gluten-free are invalid matter for the celebration of the Eucharist.”

According to this directive, “The bread used in the celebration of the Most Holy Eucharistic Sacrifice must be unleavened, purely of wheat, and recently made so there is no danger of decomposition. It follows therefore that bread made from another substance, even if it is grain, or if it is mixed with another substance different from wheat to such an extent it would not commonly be considered wheat bread, does not constitute valid matter for confecting the Sacrifice and the Eucharistic Sacrament.”

Consequently, those who have gluten intolerance, such as those with celiac disease or many people with autism, would not be able to partake in communion in Catholic churches. While I am neither a Catholic nor a member of the clergy, I do not believe this is what Christ intended when He instructed Christians to remember Him through communion. As the mother of a child with autism who has sensitivity to gluten, I do not believe that Jesus would want my son or any other person with gluten intolerance issues to consume bread that would make them ill. Nor do I believe that Jesus would want my child nor any other with autism excluded from communion.

Those churches that recognize the dietary needs of their parishioners who must adhere to gluten-free diets and provide them with gluten-free bread as an alternative for communion reflect a welcoming spirit that should be part of communion. Rather than excluding believers, churches should be including them as part of a rite that binds Christians together. Instead of insisting that the bread be made of wheat, churches should remember Christ’s teachings, “This is my body, which is given for you. Do this to remember me.” I sincerely hope that the Catholic Church will prayerfully consider the importance of showing mercy to those who cannot eat wheat by offering them alternative communion bread. To deny these believers access to a significant rite seems to be directly in contrast to what Christ intended.

“Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.” I Peter 3:8

Sunday, July 16, 2017

Marriage and Raising a Child with Autism

 
Twenty-nine years ago, Ed and I were married and said our vows in front of God and our family and friends. At the time, we had no idea how those promises of commitment would be tested over time, especially in raising a child with autism, something we never anticipated. Nonetheless, the struggles we have faced have only served to make us stronger as people and our marriage stronger in faith and hope and love.

Although the statistic of an 80% divorce rate among parents of children with autism is often presented as truth, studies have shown this to be untrue. In fact, research done by Freedman and Kalb published in 2011 found “no evidence to suggest that children with ASD [autism spectrum disorder] are at an increased rate for living in a household not comprised of their two biological or adoptive parents compared to children without ASD in the United States.” Moreover, “results show that a child with ASD is slightly more likely than those without ASD to live in a traditional household.”

So, what keeps a marriage solid in the face of the obstacles autism presents in family life? I can only speak from our own experience, but I can clearly point to certain factors that have not only kept our marriage together but have also made it stronger.

First, one of the most important components of our marriage is our shared love and devotion for Alex that guides nearly every aspect of our lives. Trying to make his life the best it can be consumes our thoughts, time, and energy. Our shared goals encourage us to work together harmoniously to determine the best ways to help our son. As Alex makes progress, we celebrate together, knowing that our collaborative effort has helped make those milestones possible.

In addition, we know the value of tag-team parenting. Raising a child with autism is often daunting and can test patience and endurance. When one of us is flagging, the other steps in to give the other a needed break from the responsibilities of parenting. Sometimes we simply back the other one up by reminding Alex to thank the other parent or reiterating instructions we have heard the other one give him.

Also, we support each other by giving encouragement and praise often. Since these children don’t follow the typical patterns of development, we frequently find ourselves in situations not described in childcare manuals. Walking on uncharted paths can be scary, and we need reassurance that we’re doing the right thing. I seek guidance from Ed regarding decisions about Alex, trusting his judgment, and he consistently conveys that he completely trusts my judgment in all matters regarding Alex. Our mutual respect for one another has significantly strengthened our relationship, especially during uncertain times when we struggled to find what was best for Alex.

Another key to our marriage is division of labor. Since I am a morning person and Ed is a night owl, we take turns dealing with Alex when we are at our best. When we homeschooled Alex, we divided subject matter according to our strengths, which meant that I taught him German while Ed taught him math. He trusts me to make medical decisions, but he goes along to all of Alex’s doctor appointments and asks questions to show his support. His calm balances my anxiety, and his assertiveness makes me less timid. We complement each other well.

At other times, teamwork is essential, and we have learned to work together well. Our ability to fabricate creative details together to soothe Alex’s worries on the spur of the moment is sometimes nothing short of amazing. While we weave stories with more fiction than fact, we are able to convince Alex that he has nothing to fear. Our combined skills enable us quickly and quietly to remove Alex from a situation he suddenly finds overwhelming. In fact, we often joke that we could work for the Witness Protection Program because we can get Alex in and out of places without anyone ever knowing he was there. With just a look between us, we know what we need to do without saying a word, working together to get Alex to a secure and serene place.

Certainly the most essential pillar of our marriage is our faith. Despite our different upbringings as a Catholic altar boy raised in New York City and a Midwestern Protestant girl, we have found common ground in our Christian faith. As our faith has been tested, we have prayed harder for patience, strength, and Alex’s healing. When our prayers have been answered, we have thanked God for His goodness. As parents, we have been most proud of the faith Alex has developed, knowing that God will always take care of him.

On this anniversary of our wedding, we celebrate another year together, but perhaps more than typical couples, we know how precious our marriage is because it has been tested. While dealing with the obstacles of autism could have taken its toll on our relationship, God has given us everything we needed and allowed our love to grow stronger. Moreover, through His gift of Alex, we have a daily reminder of what is most important in life, and we are able to experience true joy watching our son, who––despite autism––finds happiness in the simple things of life.

“Children are a blessing and a gift from the Lord.” Psalm 127:3