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 Inflammed 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 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

Sunday, July 9, 2017

Increasing Intelligence in Autism

For weeks, I have been setting aside autism research to study once I had the time and the concentration needed to read and understand these articles. Since Alex is feeling better, and my to-do list is getting shorter, I delved into some of those research articles I had put away for future reference. Yesterday, I ran across an interesting article published online in Spectrum on May 13th of this year entitled, “Many children with autism get significantly smarter over time.” [To read this article, please click here.] Written by Katie Moisse, this article summarizes research done by Professor Marjorie Solomon and her colleagues at University of California, Davis, MIND Institute. This research was presented in San Francisco at the 2017 International Meeting for Autism Research held in May.

Using data from the Autism Phenome Project, a long-term study of children with autism, Professor Solomon and her research team looked at the IQ scores of 20 girls and 82 boys diagnosed with autism. Comparing these children’s IQ scores at 2 to 3 years of age to their later scores between ages of 6-8, the researchers found that IQ scores were not stable in these children. In typical children, IQ scores tend to stabilize around the age of 5. However, half of the children with autism in this study had increased IQ scores between the ages of 2 and 8. These findings sharply contrast a 2013 study that found IQ scores varied little from childhood until middle age in people with autism.

Professor Solomon and her colleagues divided the children with autism into four groups. First, the “high challenges” group, which made up 27% of the children in the study, started with IQ scores around 44, and these scores dropped over time to an average of 36.

The second group made up 18% of the study group; named the “challenges” group, they averaged IQ scores of 62, which remained stable over time.

A third group, the “lesser challenges,” made up 22% of the children studied. This group started with IQ scores around 100, considered average intelligence, and their scores improved to about 111. These children showed the most improvement in autism severity over time, as well.

The fourth group, which comprised approximately one third of the children in the study, was called the “changers.” These children started with below average IQ scores (around 65), but they made noticeable progress with time, averaging later IQ scores just below 100. In addition, the changers reflected the most progress in verbal ability over time.

In addition to studying the changes in IQ scores, the researchers noted different patterns of progress regarding communication skills, autism severity, and behaviors. Behaviors were specified as internalization, such as anxiety, and externalization, such as hyperactivity. Over time, all four groups––high challenges, challenges, lesser challenges, and changers––exhibited fewer negative behaviors. Professor Solomon notes that this study should encourage families with autism, stating, “…over one half of individuals are seeing big IQ gains over time, and all are seeing internalizing and externalizing behaviors drop off.”

Certainly, as a parent of a child with autism, I find the results of this study hopeful, not only because these children’s IQ scores increase, but also because their negative behaviors decrease. However, I’m also curious about the connections between improvements in IQ scores, communication skills, and behavior. Since IQ tests often tend to be related to verbal skills, perhaps as the children’s communication skills improve, their IQ scores more accurately reflect their true intelligence. Maybe when their behavior improves, they can better focus on learning and testing, which could account for their higher IQ scores. Moreover, I wonder what positive effects various therapies (speech, behavioral, occupational, etc.) might have upon these children, reducing their autism severity and improving their communication, behavior, and ability to learn. These children might not be actually getting smarter; they just gain the skills they need to show how much they really do know.

Nonetheless, any improvements, whatever their cause, are reasons to celebrate. As we have seen with Alex, the better he can manage anxiety, the easier the words can flow to express what he’s thinking and feeling, and he can then demonstrate what knowledge he has been storing in that amazing mind of his. Hopefully, this research will remind people never to underestimate the potential of children with autism because with time they do, indeed, get better.

“But there is a spirit within people, the breath of the Almighty within them, that makes them intelligent.” Job 32:8

Sunday, July 2, 2017

What a Difference a Week Makes!

After weeks of waiting for Alex to recover from the ill effects of thrush and essentially waiting for our anticipated relaxing summer to begin, we had breakthroughs this week. Our prayers were being answered, and we were reminded that God puts people in our lives so that we can support each other.

On Monday, the office of the nurse practitioner who prescribes Alex’s medications for anxiety returned my call after three weeks of waiting to hear from her. Her receptionist told me that his lithium level was a little higher than normal and that we should reduce his bedtime dose. In addition, the nurse practitioner wanted us to have his lithium level tested in a month, and she can see him in a few weeks, instead of waiting until the middle of September, as we’d originally been told. Although we already knew the level was too high, had reduced the dosage three weeks ago, and had retested the level and found it thankfully back in normal range, I was glad that her professional assessment was the same as my mother’s instinct. Moreover, I’m pleased that we don’t have to wait as long to see her as we had previously thought.

On Tuesday, I found out that one of my closest friends, who has an adult son with disabilities, will soon receive the Medicaid waiver providing services for him after a long wait. As I explained to her, this is like winning the lottery for parents of children with disabilities because we can finally get the support we need for our kids. I think she’s a little skeptical, but I pray that her son will qualify for services that will not only make his life easier but also his parents’ life, too.

On Wednesday, I chatted with my neighbors who also have a son on the autism spectrum. Even though their son is higher functioning than Alex, we share the same worries about how our sons will cope in the adult world, especially if we’re not right there to help them. They also told me that our new neighbors, whom they have met but I have not yet, have a child with autism. How mind-boggling it is that three families within a few houses of each other are dealing with autism! Of course, some experts would simply attribute this “coincidence” to better diagnosis, rather than an autism epidemic.

On Thursday, Alex had his best music therapy session in a month. Instead of acting lethargic and irritable, he was engaged and good-natured––a positive sign that he’s finally feeling better. He even requested two new songs: “Take Me Out to the Ballgame” and “Go, Cubs, Go,” a sure sign that he’s been watching a lot of Chicago Cubs baseball games on television this summer.

On Friday, Alex showed that he’s feeling better by requesting to go hiking. Apparently, his energy levels are returning because he did a great job walking the trails at a nearby wildlife preserve, despite the mid-eighty-degree heat. In addition, we have noticed that his appetite seems to be returning, as the variety and amount of food he’s eating has increased. Along with the physical improvements that indicate healing, his mind is sharper, as evidenced by improved speech in his comments, questions, and answers. Thankfully, the brain fog that accompanies thrush appears to have vanished, and Alex is doing so much better.

Yesterday, we took him to his cousin’s graduation open house, and he did remarkably well, despite all the people and activity there. He was pleasant and even did a good job of speaking to people. In contrast, the previous week at this other cousin’s graduation open house, he was anxious and overwhelmed, and we wound up not staying very long. However, a positive experience there made a lasting impression. My sister-in-law’s sister is very sweet to Alex, and she made a special point to come talk to him at the open house. Her kindness did not go unnoticed because Alex has added her to his nightly prayer list this week. As I have said before, I have to think that God hears the earnest prayers of my son, who appreciates those who are kind to him.

Although I found the month of June frustrating, waiting for Alex to get better, God answered our prayers for healing. As a new month begins, we have hope that Alex will continue to improve so that we can enjoy the relaxing summer I had envisioned. Although I don’t know what our plans will entail, I do know that I will be grateful that Alex is feeling better so that he can live life to the fullest. As Alex frequently reminds us, “Wait and see!”

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

Sunday, June 25, 2017

Held Up

The month of June hasn’t turned out as I’d planned. After over a year of not dealing with thrush, poor Alex has had one of the worst bouts he has ever had. Not only does the fungal infection make his mouth and throat sore, but the illness also causes him to develop terrible dandruff and acne. Besides the physical effects, the yeast overgrowth brings on brain fog that makes him less mentally sharp, especially when it comes to verbalizing what he wants to say. On top of that, we discovered that his lithium medication levels were too high, causing an increase of tremors that make using his hands extremely difficult. Since he had been doing quite well for many months, I was eagerly anticipating summer so that we could relax and enjoy activities together as a family. Instead, we have held up on doing things until Alex feels better.

Rather than going to restaurants, one of Alex’s favorite things to do, we have been literally spoon feeding him applesauce, coconut milk yogurt, eggs, and baby food. Our blender has been put to good use making fruit smoothies and rice milk ice cream shakes that soothe his throat and fill his tummy. Because he has lost some weight on his already slim frame, we have had to encourage him to eat every meal and nutritious snacks to ensure that he doesn’t become too thin. Even though he doesn’t feel good, he has been a trouper about eating what appeals and even trying to eat the foods he normally enjoys that apparently doesn’t taste good right now, a side effect of the thrush.

At the end of May, we took him to his family doctor because we were concerned about his decreased appetite, weight loss, and suspicion that thrush was behind his symptoms. His doctor gave us a prescription for seven days of the antifungal Diflucan to treat thrush and wanted us to return in a few weeks after he returned from vacation. He also expressed concern about the lithium level shown on a recent test, which we assured him we would discuss with the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety.

After valiant attempts to contact the nurse practitioner by phone and email yielded no response, despite my insistence with her staff that we needed guidance regarding the lithium medication, we prayed and decided that we needed to do something to prevent lithium toxicity. With Alex’s doctor out of town and his nurse practitioner not communicating with us and unable to see him until the fall, we lowered his lithium dosage on our own. Thankfully, we saw no negative side effects, and his tremors seemed to decrease a bit with the medication reduction. While we were concerned about making this change without medical guidance, we believed it was the right thing to do.

This week, Alex had an appointment with his doctor, who was pleased that he had not lost any more weight and was showing signs of improvement. However, he agreed with us that the thrush is not completely gone, so he prescribed another round of Diflucan, this time for two weeks. When we explained our dilemma with the lithium dosage, he completely supported our decision, which was reassuring. In addition, he ordered a blood test to check the current lithium level that day and told us if the level was still too high, he would reduce the dosage again. We were pleased that he was taking charge and had a good plan after we felt abandoned by the nurse practitioner. Moreover, he wants to see Alex again in three months––or sooner if needed––to check his weight and overall health. Needless to say, we were happy with how well this appointment went, especially since Alex was very cooperative, feeling content and confident that we have a family doctor who genuinely cares about Alex and his health.

Later that afternoon, the doctor’s office called with the results of the lithium test (which was sooner than expected) to let us know that with the medication reduction we had made, the lithium level is now in normal range. Consequently, no further medication reductions are needed at this time. The good test results confirmed for us that we had done the right thing with God’s guidance and that Alex’s doctor is on top of things, which is important to us. While one professional had let us down, another had stepped up and made sure that Alex received proper care. Once again, God had shown us that He is always faithful and provides for our needs.

On Friday evening, we attended our first concert of the summer, a local church band playing in our downtown park plaza to raise funds and collect food for needy children in our community. Clearly feeling better than he has all summer, Alex enjoyed every minute of the concert, smiling, swaying to the music, and clapping his less shaky hands. While most of the songs were upbeat popular music, the band also played two contemporary Christian tunes. As they sang of God’s love, Alex’s expression can be best described as beatific. Sometimes I think he is closer to God than most of us, strengthened by a faith that allows him to be confident, in spite of autism, knowing that everything will be all right in the end. Watching his eyes shine and his smile spread across his face, I was reminded that, in spite of illness and autism and disappointments, God always upholds us and takes care of us, and, indeed, everything will be all right.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Sunday, June 18, 2017

Father's Day

[I wrote this essay about Ed and Alex's relationship last year, and everything still holds true today. Ed's unconditional love for Alex and me has kept our family strong through trials and triumphs through the years. He and I have worked together as a team to make Alex's life better, and his steady calmness keeps me grounded. Patiently listening to my concerns, observations, and research summaries, Ed always supports me and assures me that he completely trusts my judgment. His encouragement in the midst of difficult times keeps me going; he helps me become all the things I am not by nature: brave, patient, and assertive. Of the many blessings in my life, by far one of the greatest is my husband, Alex's father.]

Raising a child is no easy task, and being a parent of a child with special needs adds a whole new set of unimaginable responsibilities. After more than two dozen years of watching Ed rise to the challenges of raising our son with autism, I am amazed by the patience he has developed, the strength and calm he exhibits that make me stronger and calmer, and the unabashed pride he takes in even the seemingly smallest of Alex’s achievements. Through the good and the bad and even the horrible times, Ed’s devotion to Alex and me has remained constant and has even become stronger with time, and for that, I am truly grateful.

I’ve heard it said that the best thing a father can do for his children is to love their mother. Alex witnesses every day how much his dad loves me through his thoughtfulness, respect, and affection. Moreover, Ed also expects Alex to treat me the same way, often reminding him, “Did you tell Mommy thank you? Well, tell her!”

In addition to mentoring Alex in how to treat others, Ed has also held Alex to high expectations. While my natural tendency would be to mollycoddle Alex because autism makes simple tasks difficult for him, Ed knows that he needs to learn how to do things on his own. For example, if Alex needs to wipe his face after eating, I grab a napkin and do it for him. Ed, on the other hand, patiently gives Alex directions, telling him to pick up the napkin and instructing where he needs to wipe his face and praising him for doing a good job. Similarly, he expects Alex to pick up after himself, whereas I would just come along behind him and put his things away for him. However, I won’t always be around to wipe Alex’s face or to pick up his belongings for him, so it’s a good thing Ed teaches him to be more independent.

Some of the most precious moments of my life are when I watch the two of them together without their being aware of my presence. Looking out the kitchen window, I have seen Ed patiently teaching Alex in the backyard how to throw or kick or catch a ball, encouraging him, no matter how many times Alex had to try before he could do it himself. When he finally mastered the skill, his face lit up, and he looked for Ed’s approval; his dad’s face matched his own, beaming with happiness and pride, as did mine watching from the window.

Sometimes I eavesdrop on their conversations and find the give and take amusing. Since speaking is so difficult for Alex, we hang on his every word, even when we have to ask him to repeat or clarify what he has said. I know that Ed savors his conversations with Alex because for many years we weren’t sure if he would ever be able to say more than a few words at a time. As they chat about baseball and jazz and the stock market and other interests they share, they thoroughly enjoy each other's company and appreciate what the other has to say.

Because children never fully appreciate all their parents do for them until they have children of their own, Alex may never realize all of the things his dad does for him. From being Alex’s personal chauffeur to cutting up his food into bite-sized pieces to helping him get dressed and all the other tasks most twenty-four-year-old young men can do without their father’s help, Ed unfailing takes care of Alex and never complains.

By lovingly caring for Alex, Ed not only takes care of Alex’s daily needs, but he has also developed Alex’s faith in God. Knowing that he can always depend upon his earthly father, Alex has no doubt that he can completely trust his heavenly Father. In fact, Alex’s perception of God as being smart and funny probably comes from his attributing these qualities to his dad. However, he rates Ed as being in the high ninety percentages in these two areas, but he gives God 100% rankings in the intelligence and humor categories, noting that only God is perfect. Indeed, Alex is right about God’s wisdom because God knew exactly what kind of father Alex would need to guide him on the less traveled road of autism and gave him Ed. How blessed I am to be the wife and mother to two such extraordinary men!

“The father of godly children has cause for joy. What a pleasure to have children who are wise.” Proverbs 23:24