Sunday, February 18, 2018

Dentist Appointment

 
Last week, we took Alex to the dentist for his regular six-month cleaning and check-up appointment. Although he usually likes going to the dentist, his recent anxiety about going places had us concerned how he might react this time. Unlike some people who fear going to the dentist, Alex has had good experiences through the years and actually looks forward to his dental visits. The dental hygienist who has cleaned his teeth the past few years is especially sweet and patient with him, and her encouragement and praise make him eager to cooperate with her.

As with all of his appointments, I am careful to schedule a time that works best for Alex. For some doctors, we schedule Alex’s appointments first thing in the morning to avoid having to wait, which is more common in the afternoon. We try to avoid times when he might miss his beloved game shows, The Price Is Right or Jeopardy, and we avoid appointments that might overlap meal times. We also need to schedule around his regular behavioral and music therapy sessions because he doesn’t want to miss them. Working around Alex’s sacred schedule allows small windows of times in the morning and afternoon, but we manage to keep him happy.

For his dentist appointment, he didn’t have to sit in the waiting room but a few minutes before his dental hygienist came to greet him. Immediately, he happily jumped up and followed her back to the room where his teeth would be cleaned and checked—so far, so good. (We were even thrilled that he got into and out of our car without being coaxed.) Once he was seated in the dentist’s chair, his hygienist began putting on the paper bib to protect his clothes as she cleaned his teeth. She warned him that the metal chain that holds the bib might be a little cold on the back of his neck. As soon as he felt the chain against his neck, he decided it was too cold and decided he wanted nothing to do with the bib, pulling it off the chain and handing it to me. I assured him that he didn’t have to wear the bib and assured her that his shirt could be washed if anything spilled on it.

While the hygienist was preparing to clean Alex’s teeth, she chatted with him and tried to make sure he was comfortable, even asking if the light bothered him (probably knowing that the bib did), but he told her the light was fine. However, he was a little shaky, and she gently patted him on the shoulder and asked him if he was okay. Calmly, he admitted he was a little nervous. While Alex used to utilize a series of calm down skills, he now prefers only two options when he’s anxious: sit quietly or talk about his concerns. Consequently, I asked him if he wanted to talk or be quiet. He said he wanted to sit quietly and needed two minutes to calm down. Despite his nerves, he seemed to be in good control of his emotions.

Knowing that Alex literally meant he needed exactly two minutes, I figured this would give his hygienist time to note his medication reductions on his chart, so I gave her a copy of his updated medication dosages. Also, I asked her if she could put on the country music cable channel on the television after asking Alex if he would like some music. Clearly, Alex was regaining his composure in that short amount of time, as he stopped shaking and he visibly relaxed, even starting to sing along softly to the music. At the end of the two minutes, he announced that he was ready to have his teeth cleaned. He knew.

During the cleaning, Alex was calm and cooperative, answering any questions she asked him. Concerned for his comfort and attentive to his needs, she told him each step of the process and gave him choices to make him feel in control of the situation. For example, she asked him if he wanted her to spray his teeth with water or to drink from a cup himself. Usually, he doesn’t mind the water hose and suction, but he asked for a cup of water to rinse instead. Because of his sensory defensiveness, we always have to coax him to open his mouth wider, but he was cooperative, and she was able to clean his teeth successfully. Fortunately, Alex’s good daily dental hygiene habit of faithfully brushing his teeth twice a day with a sonic electric toothbrush pays off in that he had very little plaque that needed to be removed. When she was done, she enthusiastically praised him for doing such a great job. I think she was especially impressed––as was I––that he pulled himself together so nicely even though he started the session with some trepidation.

As we waited for the dentist to come and check Alex’s teeth, his hygienist asked him if he had any questions for her. He immediately asked her if he had any cavities. She told him that she didn’t see any, but the dentist would check that for him. While the dentist checked Alex’s teeth, his hygienist sang Alex’s praises, telling what a good job he did cleaning his teeth daily and how well he had cooperated as she cleaned his teeth. This seemed to make Alex (and certainly his mother) proud. After the dentist examined Alex’s teeth, he stated that everything looked good, there were no cavities, and he would see Alex again in August for his next six-month check-up.

Despite any fears Alex had about going to the dentist, or for that matter, any fears we had about taking him to the dentist, everything went remarkably smoothly. Even though he was a bit anxious, we were proud of the way he handled himself, never getting upset, calmly admitting his nervousness, and quickly calming himself so that he could do what needed to be done. Needless to say, his behavioral therapist, who has taught him many ways to cope with anxiety, was delighted to hear how well he had dealt with his nerves at the dentist. Of course, we were not only pleased with how well Alex coped at the dentist, but also with getting a good report that his teeth are healthy. Once again, we find ourselves grateful to God for the progress Alex continues to make in dealing with anxiety and for the kindhearted people who work with Alex and bring out the best in him. Most of all, we are thankful for Alex’s faith in God that helps him fight his fears, knowing that God watches over him and brings him the calm he needs whenever life overwhelms him.

“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, February 11, 2018

How Learning Another Language May Help Children with Autism

 
One of the most common characteristics of autism is impaired communication. Specifically, children with autism often have delayed language development, and those who do speak may do so in a repetitive manner, asking the same questions over and over or echoing words and phrases they have heard before, such as lines from television shows. In addition, even some adults with autism have trouble making conversation and tend to stick to topics that interest them; they may have difficulty with the concept of give and take that is needed for social language interaction.

As problematic as acquiring language seems to be for many with autism, one would think that trying to learn another language might be a futile effort. However, a recent study indicates that learning a second language proves beneficial to children with autism. Last month on January 23, 2018, Medical News Today published an article online entitled “Children with autism may benefit from being bilingual” written by Tim Newman. [To read this article, please click here.] Summarizing research published November 7, 2017, in the journal Child Development by Ana Maria Gonzales-Barrero and Aparna Nadig from McGill University’s School of Communication Sciences and Disorders in Montreal, Canada, this study examined the concept of “set-shifting,” or cognitive flexibility, in autism.

Cognitive flexibility deals with the ability to shift from thinking about one concept to another, which allows people to respond to changes around them. This ability to shift thoughts often proves difficult for people with autism who prefer predictable routines and schedules. However, flexible thinking is essential in developing certain skills, multitasking, and dealing with changes in life. Consequently, improving cognitive flexibility in children with autism may help their ability to learn new skills and to cope with transitions that may be challenging for them.

Previous studies have suggested that being bilingual improves certain cognitive skills, such as memory and focus. Researchers believe that switching between two languages enhances brain performance. In this particular study, the researchers wanted to see if being bilingual helped children with autism overcome difficulties in shifting their thoughts.

This research study included four groups of ten children ages 6-9, none of whom had intellectual disabilities: bilingual and typically developing, monolingual and typically developing, bilingual with autism, and monolingual with autism. These children completed tasks on computers in which they sorted objects by color then by shape. Although switching tasks is typically difficult for children with autism, those who were also bilingual did better than the monolingual children with autism. However, the researchers found that this bilingual advantage observed during the computer task was not found in daily life tasks. The researchers plan to expand their studies by following the development of these children for a few more years, and studies of more children may provide greater insight into the connection between bilingualism and cognitive flexibility.

As one of the researchers, Dr. Ana Maria Gonzales-Barrero, notes, “It is critical to have more sound evidence for families to use when making important educational and child-rearing decisions, since they are often advised that exposing a child with ASD to more than one language will just worsen their language difficulties.”

This research was especially intriguing to me because despite his difficulties in learning language, Alex has shown great interest in studying languages other than his native English. When he was a preschooler, he was fascinated by characters on the children’s television show Sesame Street who spoke Spanish. He especially showed an interest in learning how to count in other languages, so Ed taught him Spanish and French while I taught him German. When his occupational therapist discovered five-year-old Alex’s interest in other languages was a powerful motivator, she bribed him to do tasks he avoided. For example, she would teach him words in French if he would walk across a small wooden bridge or swing in the platform swing.

Wanting to expand beyond the languages his parents had learned in school, Alex found books in the library and at the bookstore that increased his knowledge of French, Spanish, and German and taught him Hebrew and Italian, which interested him. In addition, his beloved family doctor also taught him how to count in Swedish, which he found amusing. This interest in languages continued into his teens and twenties, and he was delighted when his behavioral therapist who was raised in Turkey was able to teach him how to count in Turkish. Even today, if he hears people speaking another language, he immediately notices and eagerly tries to figure out what language he is overhearing.

While I’m not certain whether Alex’s informal study of language has helped make his thinking more flexible, I do think that trying to say words in another language has made him more aware of how to pronounce words, which can be difficult for him. Maybe learning words in other languages has contributed to his phenomenal memory. Perhaps the most valuable use of his limited knowledge of various languages has been using multilingual counting as a calm down skill.

The practice of counting to ten when a person is angry is a common way to control temper. For Alex, rattling off the numbers from one to ten in English did not give him enough time to cool down when he was upset. Consequently, we had him count to ten in as many languages as he needed. Because he had to think harder to count in the other languages, this took him a bit longer to get through the counting routine. By the time he had reached “on” (ten in Turkish), he had usually shifted from being mad to being entertained by his ability to recite numbers in various languages.

Certainly, the impact of learning new languages upon flexibility of thought processes, especially in autism, merits further study. This research shows the importance of examining language acquisition as a way to help children with autism learn flexibility. With Alex, we have discovered that sometimes the most offbeat ways of helping him improve his skills often have the best results. As Alex’s beloved French-speaking occupational therapist taught us when he was little, always use his strengths to overcome his weaknesses. In this case, we are thankful that he has shown the interest and ability to learn bits of other languages that may have helped him develop skills he needs to cope with changes in life.

“There are many different languages in the world, and every language has meaning.” I Corinthians 14:10

Sunday, February 4, 2018

A Success Story

 
Last Friday, we had our typical quarterly meeting with Alex’s support team; however, it was not typical. A few months ago, we found out that Alex’s fantastic case manager who had worked with us for more than five years––ever since he started receiving state waiver funds for autism––was resigning to go into a different career. While we were terribly disappointed to lose her, not just because she was excellent at her job but also because she is a genuinely kind person who took great interest in Alex, we hoped that her replacement would continue the good work she had started.

Once we were notified who would be Alex’s new case manager, the person who coordinates his support services and budget, we asked his therapists if they knew her. Both his behavioral therapist and music therapist had worked with the new case manager before, and they described her as experienced, pleasant, and quite capable. Moreover, his music therapist mentioned that this case manager was often given difficult cases because she could adeptly handle them. While I hoped we weren’t considered a difficult case, I was relieved that we were going to be working with someone who has an excellent reputation.

In the days leading up to our meeting, I was a bit obsessed with making a good first impression on our new case manager. Since the meetings are held in our home, I wanted our house to be sparkling clean, so I washed curtains, scrubbed kitchen cabinets and appliances, wiped down walls and woodwork, and vacuumed upholstery in addition to my regular cleaning routine. Knowing that case managers are concerned with the safety of their clients, I made certain our fire extinguisher was where I thought it was, replaced batteries and tested our smoke detectors and carbon monoxide detector, and was prepared to show her that the hot water heater is set so that Alex can’t be scalded.

Besides physically preparing our home for inspection, I also mentally prepared for any questions she might ask. Although Alex is doing quite well, and we are delighted with the professionals who work with him, I wondered if she would question why he is not in a day program, as many disabled adults at his age are. As though I were preparing for an interrogation, I rehearsed what I would say in my head, making sure I sounded confident about our decisions but not defensive. Essentially, I was overpreparing.

In addition to having the new case manager at the meeting, we also had a new representative from the company that provides music therapy and respite care. Even though I had met him before, Alex and Ed had not. Alex’s music therapist, who provides entertaining Alex anecdotes during meetings, was unable to attend, but his behavioral therapist, who is one of his biggest cheerleaders, was going to be there to sing his praises. Also, she was bringing a new therapist she is mentoring so that he could observe the process of quarterly meetings. This meant that three new people would be attending, giving me even more incentive to make sure everything was as perfect as possible.

On the morning of the meeting, Alex seemed a bit anxious and confirmed my suspicion by waving “the claw,” his hand pointed down with his wrist at a 90-degree angle, a gesture he uses to let us know he’s not happy about something. As I asked him why he was upset, he told me that he was nervous about “so many new people” and letting “strangers” in our house for the meeting. Although I completely understood his anxiety about meeting new people, I reassured him that they weren’t really strangers but just people we hadn’t met yet. Once I explained that everyone in the group knew somebody and that his dad and I would be there along with his beloved behavioral therapist, he seemed less anxious about the meeting.

As it turns out, his fears and my concerns were wasted energy because the meeting went extremely well. The “strangers” were friendly, and the conversation flowed smoothly. Alex’s new case manager exceeded her excellent reputation, clearly capable of handling his case and supportive of all the decisions we have made, including our decision not to put him in a day program at this point. Moreover, she praised our support staff and told me that Alex’s therapists are wonderful, and we completely agree. With her comforting manner, I doubt she would have even noticed had I not vacuumed the couch and chairs.

During the meeting, we discussed the progress Alex has made in the past few years, and his behavioral therapist enthusiastically explained the improvements she has seen that have allowed Alex to enjoy community outings and crediting Ed and me for our support. We also discussed how Alex has adapted quite well to three anxiety medication reductions in the past eight months, which is apparently quite rare, according to his behavioral therapist and his case manager. In fact, his case manager summarized how well Alex is doing in so many ways by calling him “a success story.” She went on to explain that her experience has been that people with autism don’t improve as much as Alex has.

Knowing that she had read all of Alex’s files, even the harrowing introduction describing his out-of-control anxiety causing aggressive behavior six years ago that led to weeks of hospitalization in a locked psychiatric ward, I noted that she was impressed with the calm and pleasant current version of our son. While Ed and I were pleased that the meeting, despite all the new people, went smoothly, we were even more pleased that Alex was remarkably patient, polite, and engaged in the proceedings. He answered all of the questions asked of him well, and he sat nicely the entire hour. We could not have been any prouder of how he handled himself in this situation he had earlier admitted made him uneasy.

As we concluded the meeting, his case manager asked us, knowing the struggles we had faced, if we ever thought Alex would be doing as well as he is right now. To be honest, in my head I’ve had fears and doubts over the years, but in my heart I’ve believed that he would get better and better with time. To answer her question, I simply replied, “We prayed for this.” For all our fears, big and small, God has worked out all the details––from bringing us the right people supporting us in making Alex better to guiding us as parents how to best help him to healing his body and mind. While we are overjoyed that his case manager and therapists see Alex as a success story, we know who was truly responsible for bringing him this far, and we give the glory to God. Moreover, we wait with anticipation to see what God has planned for Alex to continue his success story.

“And my God will meet all your needs according to the riches of His glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen.” Philippians 4:19-20

Sunday, January 28, 2018

Limited Life Expectancy in Autism

 
The average life expectancy for a person with autism is 36. When I read that statistic online a couple of weeks ago, I was torn between skepticism and shock. As the parent of a 26-year-old son with autism, I needed to find answers. Do people with autism really die much younger than typical people? If so, why do they die at such a young age? What can we do to help our children lead longer and healthier lives?

With assistance from Google searches, I found an online article entitled “Why People with Autism Die at a Much Younger Age” written by David Mills and published in healthline on March 25, 2016. [To read this article, please click here.] This article references research published in The British Journal of Psychiatry in March 2016. [To read this research, please click here.] This research article, entitled “Premature mortality in autism spectrum disorder,” describes the results of a Swedish study of data between 1987 and 2009.

At the Karolinska Institute, neuropsychologist Tatja Hirvikoski and colleagues compared mortality rates in Sweden between 27,000 people with autism and 2.6 million typical people. The average age of death for the general population was 70 years old, whereas the average age of death for people with autism was 54 years old. If the person with autism also had a cognitive disability, the average age at death was just under 40 years old. Not surprisingly, Dr. Hirvikoski was “shocked and horrified” by these results.

Further research indicates that for lower functioning people with autism, the main cause of death was epilepsy, found in 20-40% of the autism population, as compared to only 1% of the general population. In higher functioning people with autism, this study found that the primary cause of death was suicide, which occurred at a rate nine times higher than that found in the general population.

In addition, the research discovered that people with autism died from a wide range of illnesses, including heart disease and cancer. The researchers suggested that these fatal illnesses could be caused by genetic factors or poor medical care or both. Those with autism who have impaired language and social skills may have difficulty communicating their symptoms to doctors, perhaps delaying diagnosis and treatment of the illnesses.

Parents of children with autism also note that difficulties with social and sensory issues create a great deal of stress that could lead to chronic illness. I would add that sleep problems common in autism could also contribute to poor overall health. Moreover, our experience with heavy metal toxicity in Alex leads me to wonder how many people with autism suffer from toxins that lead to chronic illness and cancer. Clearly, more research needs to be done in this area to find the cause of early fatal illness in autism.

Continuing my research on mortality and autism, I found an article online from Susan Scuttl published March 21, 2017, at CNN Health entitled “Children with autism 40 times more likely to die from injury, study says.” [To read this article, please click here.] This article summarizes data from research published May 2017 in the American Journal of Public Health. Written by Joseph Guan and Dr. Guohua Li, the article entitled “Injury Mortality in Individuals With Autism” focuses upon causes of fatal injuries in people with autism in the United States. [To read this research, please click here.]

Using 39 million U.S. death records from 1999-2014, the researchers found the death records of 1367 people with autism––1043 males and 324 females. Their data indicated that while the average age of death for the general population was 72 years old, the average life expectancy for a person with autism was only 36.2 years old.

Moreover, this data indicated that 28% of people with autism died from injuries, which is three times the rate of death by injury for the general population. In addition, the data showed that the average age that typical people died from injury was 55, while the average age for death by injury to a person with autism was only 29.

Three types of injuries were found to be responsible for a total of eighty percent of accidental deaths in people with autism: suffocation, asphyxiation, and drowning. Unlike the Swedish study, this research did not find high rates of suicide among adults with autism. Children with autism under the age of 15 were forty times more likely to die from injuries than their typical peers. The most common cause of fatal injury in children with autism is drowning, which causes 46% of accidental deaths, especially among children ages 5-7. Statistics indicate that nearly half of children with autism wander from places of safety, and they are often attracted to water, where sadly many of them drown. In the conclusion of this study, the researchers note, “Individuals with autism appear to be at a substantially heightened risk for death from injury.”

Whether the life expectancy for a person with autism is 29 or 36.2 or 40 or 54, depending upon the research data, any of these ages is much too young to die. Knowing how vulnerable Alex is, I always pray for God to keep him happy, healthy, and safe. Clearly, more research must be done to find better ways to treat health conditions in children and adults with autism and to protect them from dangers that could end their lives prematurely. Our society must take responsibility for meeting the special needs of children and adults with autism. Their lives depend upon it.

“Yea, though I walk through the valley of the shadow of death, I will fear no evil: for Thou art with me; Thy rod and Thy staff they comfort me.” Psalm 23:4

Sunday, January 21, 2018

Venturing Out

 
In the past few weeks, Alex has developed an aversion to leaving the house. Since he usually loves going places, this is totally out of character for him. However, the thought of going out has caused him to have panic attacks, and to avert further distress, we have supported his decision to stay home. Amateur meteorologist that he is, Alex tells us that the weather is too cold and windy to go outside. The bitterly cold temperatures and subzero wind chills this month prove his logic correct. However, we also know that at some point he will need to leave the house, and we’ve wondered when he might be willing to venture outside.

Bless his heart, he has attempted to overcome his fears of going out, even being willing to put on his shoes and coat before deciding that he just can’t go. We’ve had him buckled in the car, and even gone a few blocks before he tells he needs to go home. Clearly, he has been dealing with some internal conflict because he seems disappointed that he can’t go places he wants to go. Essentially, “the spirit is willing, but the flesh is weak.”

Knowing that he has two appointments coming up in the next few weeks, I have wracked my brain trying to figure out someplace we could take him to get over his fears. His behavioral therapist felt that if he had a good experience of going out, Alex would be able to overcome his fears of leaving the house. Since the weather yesterday was warmer than it had been, the winds were calm, and the skies were clear, I knew we had to try one more time to get him in the car and go someplace. I decided we were going to take him to the lab to have his blood drawn before his upcoming six-month appointment with the nurse practitioner who oversees his medications.

While taking Alex for a blood draw may seem like a strange enticement to overcome his fears of leaving the house, he loves going to the lab and thinks it’s a grand adventure. The technicians there are very kind to him, and he is always cooperative for them. In our usual swift, coordinated efforts, Ed and I managed to get Alex out of the house, into the car, and to the lab without any protesting on his part. As we arrived at the lab, he didn’t seem at all anxious, and he walked quickly toward the door as if he didn’t have a care in the world. While I went to register him for the blood tests, Alex and Ed sat in the comfortable waiting room watching NBA highlights on a large screen television. Usually, checking in for tests at this lab is a simple task, and since we were the only ones there, I thought we were home free. I celebrated a little too early, though.

As I gave the information to the clerk, she began to question me about why Alex had not fasted for twelve hours. I explained to her that he has autism, and we have to do these tests when he is at his best, so we never do the twelve-hour fast. She wanted to push the point, and I more forcefully explained that his doctors understand why we do the tests without fasting and are fine with that. Then she was insistent that he could not do the test for one of his medications because he hadn’t waited twelve hours. Again, I explained that we always do the tests this way. Unconvinced, she told me she needed to call the lab technician to check if that was a problem. I told her that I could speak to the technician myself because I knew this was not a problem. Nonetheless, she called the technician who said it would be okay, just as I had told her.

While speaking with her, I realized the transitions I had made in my tone and attitude in the few minutes I was there. Although I had started with my usual pleasant and polite self, I found myself using my middle school teacher voice, the one that calmly yet firmly told students, “Do NOT put that pen in the pencil sharpener!” When that didn’t seem effective, I resorted to my mother’s voice. I’m not talking about the voice I use as Alex’s mother; I mean the voice of my own mother when she is perturbed that increases in volume and sarcasm. We both learned that from the master, her mother, my grandmother, whose ring I always wear to remind me never to take guff from anyone because she never did. Finally, I channeled the voices of my husband’s New York-born sisters who get things done because they don’t let anyone push them around. With all those strong women as models in my mind, I was finally able to convince the clerk that I knew what I was doing.

After all that, I thought things would move along smoothly. However, a change in insurance companies this month seemed to be a huge deal as she tried to input the new information. After several tries, she was able to get the insurance straightened out, and then I thought we were on our way. However, she also questioned the diagnostic code on the lab orders and said that it was incorrect. As I spouted off the code number for autism and the diagnosis of medication management, suddenly, the diagnostic code seemed to be all right. In the end, I resorted to my pleasant and polite voice, thanked her for her trouble, and wished her a nice evening. Thankfully, Ed and Alex were having a more enjoyable time in the waiting room watching television, and Alex had been remarkably patient and calm in this first outing in weeks.

Fortunately, we didn’t wait long before the lab technician came to get us, and she remembered Alex from a previous time. She was friendly and kind to him, and he did a fantastic job of answering her questions, being polite, and sitting calmly and patiently as she drew five vials of blood. Remarking about what a great job he did, she praised him as "the best patient" and told him to come back and see her anytime. Of course, Ed and I were very proud of Alex and how well he handled the situation, especially since going places had been causing such anxiety for him. Moreover, we were relieved that not only had he been cooperative about going to the lab, but he also had successfully done the tests that we needed to have run on him.

While we thought the hardest part of this outing would be getting Alex to go out, we didn’t anticipate that the registration, which is usually fast and easy, would be the most difficult. As the saying goes, “All’s well that ends well,” and we are delighted that he did so well remaining calm going out and throughout the lab tests. Now we hope and pray that his routine lab tests show that he’s healthy and that this successful trip out of the house marks the end of his anxiety about going places. If Alex can go have blood drawn without any fear, surely he can conquer his worries about going out in the windy winter weather.

“For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13

Sunday, January 14, 2018

Teaching Mercy

 
Lately, Alex has been resistant to going places, seemingly anxious about leaving the house. This unwillingness to go places is out of character for him, especially considering that one of his summer goals was to “put lots of miles on Daddy’s car.” However, the recent stretch of single digit temperatures coupled with below zero wind chills would certainly explain his preference for staying home, rather than going outside in the bitter cold.

His reluctance to get in the car, though, seems to go beyond dealing with the discomfort of winter weather. After some encouragement to express his concerns, we discovered that Alex was still upset about something we had forgotten. A few weeks ago, his soft drink that was sitting in the back seat cup holder tipped over and spilled on the seat. Knowing this was an accident, we didn’t react much, simply cleaning up the mess and assuring him that he didn’t do anything wrong. However, he still felt guilty, even though we held him blameless. Once we discovered that he was still feeling bad about what he thought was his fault, we once again reassured him that we weren’t angry or upset and that he didn’t need to feel bad about what had happened, hoping to rid him of anxiety about riding in the car.

Nonetheless, he seems to have current concerns about things falling. Last week, when his music therapist placed his music book on the keyboard, Alex was certain that the book was going to fall on the floor. Because he couldn’t quite find the words to express his fears, he let out a growl to let his therapist know he was upset. As his therapist and I tried to figure out why Alex wasn’t happy, he finally told us that he thought the book would fall, and that worried him. As his therapist demonstrated that the book was secure on the keyboard, I explained that even if the book fell, no harm would be done. The book falling wouldn’t make a mess, and his therapist would simply pick it up and put it back. After being reassured, Alex was able to continue successfully with the music therapy session. Knowing this incident was likely related to the spilled drink in the car incident, I decided not to mention the fears of the notebook falling again for fear of stirring up the memories of the spilled drink.

When Ed came home from work later that day, he asked me how Alex had done with music therapy, and I told him everything was fine, not wanting to make a deal of Alex’s brief moment of upset that never escalated, especially if Alex were eavesdropping, which he often does. However, when Ed later asked Alex about music therapy, he admitted to Ed that he had gotten upset. When Ed asked him what he had done, looking for details about the triggers of the upset and his reactions, Alex instead calmly replied, “Got over it.” Although Alex apparently needed to confess what had happened, he also seemed proud that he had dealt with the situation well.

Several years ago when we were having behavioral issues with Alex, he would ask me every night after bedtime prayers if had had done “anything bad” that day. While I was proud that he seemed to have developed a strong conscience and a sense of right and wrong, I never wanted him to have feelings of guilt afterward. Because his behavior has significantly improved over the years, he rarely asks me for a nightly accounting of his sins anymore. Most of the time if he does ask me if he did anything bad that day, I will tell him no, which is my honest assessment of his behavior. However, he sometimes reminds me that he got upset that day, and I must reassure him that everyone gets upset and compliment him that he handled the upset well, getting over it and apologizing. Somehow our discussions always seem to make him feel better, as he smiles and drifts off to a peaceful sleep.

Alex’s apparent need for absolution has made me think about how we as parents teach forgiveness and, by extension, explain God’s mercy. When I was growing up, I remember my mom teaching me that when I did something wrong, I simply needed to apologize, ask God to forgive me, and try to do better. Because she was always loving and forgiving, I learned that God was always loving and forgiving. If we want our children to understand God’s mercy, we must be merciful parents. We always want Alex to know that no matter what he does, we will love and forgive him, and more importantly, God will love and forgive him.

When Alex makes mistakes, we expect him to apologize, but we don’t want him to continue to obsess about what he has done wrong. Instead, we want him to know that we have forgiven him and hold nothing against him. Being raised in Protestant churches, that method of forgiveness has usually satisfied me. On the other hand, Ed, who was raised Catholic, grew up with the ritual of confessing sins. (I once asked him what he usually confessed to the priests, and he told me “eating meat on Friday” and “using the Lord’s name in vain,” both of which I have witnessed. If that’s all he did wrong as a kid, his parents can feel proud.)

Perhaps Alex needs that act of confession, as evidenced in his bedtime queries of what he did wrong or in his telling his dad the events I held in confidence, as a way of unburdening his conscience. Maybe admitting what he has done wrong decreases his anxiety since he seems to feel relief in listing his sins aloud. While we try to minimize his faults to show mercy and forgiveness, Alex wants to confess them and be reassured that even when reminded of his faults, we still love him unconditionally.

Through his confessions, Alex may gain what he really needs: absolution. When all we ask of him is an apology and an effort to do better next time––instead of punishing him––he knows that we love him and forgive him. If we as imperfect human parents can do that, certainly his heavenly Father will do the same. Consequently, he rests peacefully in the knowledge that he can obtain mercy whenever he needs it, and hopefully he is learning to extend mercy to others in the same way he has been shown compassion.

“But You, O Lord, are a God of compassion and mercy, slow to get angry and filled with unfailing love and faithfulness.” Psalm 86:15

Sunday, January 7, 2018

Autism Rates Plateau?

 
On the second day of 2018, the news proclaimed that autism rates in the United States had reached a plateau. Of course, this report should be cause for great celebration, but before we get too excited, the details need some scrutiny first. On Tuesday, January 2, 2018, the Los Angeles Times published an article written by Karen Kaplan entitled “Autism spectrum disorders appear to have stabilized among U.S. kids and teens” based upon research published that same day in The Journal of the American Medical Association. [To read this article, please click here.] Other media outlets also reported this information that seems to indicate that the rate of autism is not currently increasing. However, a closer look at this research may lead to other conclusions.

The research conducted by the National Health Interview Survey (NHIS) includes polls of American households across the county about various health conditions. When families are polled, one child is chosen at random to be included in this survey. Parents are asked the following question: “Has a doctor or health professional ever told you that (the randomly selected child) has autism, Asperger’s disorder, pervasive developmental disorder, or autism spectrum disorder?”

In 2014, 2015, and 2016, 711 parents out of the 30,502 polled answered yes to that question; their children had some form of autism. That data was given to researchers at the University of Iowa, who considered the likelihood of a household being chosen that had a child with autism and how likely a parent would be to answer that question. Using their statistical methods, they determined the rate of autism for U.S. children and teens to be 2.41% in the years 2014-2016.

Although the rate of autism increased, according to this study, from 2.24% in 2014, 2.41% in 2015, and 2.58% in 2016, the researchers concluded that the increase was not statistically significant and could be due to chance. Hence, they decided that the rates have stabilized. (If the rates could be due to chance, what was the point of the University of Iowa researchers calculating based upon likelihoods?) Over those three years, the rate of autism for boys was higher at 3.54% than the rate for girls at 1.22%. Rates of autism around the United States varied somewhat with the South at 2.21%, the West at 2.24%, the Midwest at 2.47%, and the Northeast at 3.05%.

In comparing data with another research study, the NHIS reported higher numbers of autism than the Autism and Developmental Disabilities Monitoring Network (ADDM). However, the ADDM research only focuses on a few communities (about twelve), while the NHIS surveys the entire country. In addition, the methodology is different. The NHIS relies upon family members to report whether their children have autism, whereas the ADDM has doctors review medical and educational records of the children. Nonetheless, both research groups imply that autism rates have stabilized.

The University of Iowa researchers affiliated with the NHIS study indicate that more research needs to be done to ascertain what factors, such as environmental causes, diagnostic criteria, autism awareness, or others, may be the reason for this “apparent end to a decade-long increase” in the rates of autism in the United States.

Ironically, last month that same study by the NHIS was used to show that the U.S. autism rate in 2016 reached a record high: 1 in 36 children and 1 in 28 boys. This was an increase from the previous rate of 1 in 43 children with autism in 2015 and 1 in 45 children in 2014. Nonetheless, the U.S. Centers for Disease Control minimized the significance of this increase, stating, “there was not a statistically significant change in the prevalence of children ever diagnosed with autism spectrum disorder from 2014 to 2016.” Of course, the CDC also assures people that vaccines are perfectly safe for everyone and enthusiastically recommended flu shots that have proven to be essentially useless this year.

Some factors that may skew the data would be the willingness of parents to share that their children have autism for a survey; some parents would consider that information confidential. Also, the methodology of the survey that chooses a random child might miss another child in the family who has autism. In addition, this survey includes children ages 3-7, but some children do not receive a diagnosis of autism until they are in school, which may cause the data to reflect autism numbers less than the actual statistics. Moreover, the wording of the survey question regarding autism may be problematic. Specifically, the question asks if a doctor or health professional has diagnosed the child’s autism.

However, many children, including mine, were diagnosed with autism through the educational system. In fact, my son’s pediatrician disagreed with me when I told him I thought Alex had autism, telling me that Alex was "too smart" to be autistic. Had we not pursued further testing through the school system, a diagnosis would have been delayed. That was more than twenty years ago; I would truly hope more doctors would recognize signs of autism in toddlers and trust their parents’ intuition regarding developmental delays in their children.

While I have great hope that autism rates in the United States and around the world will eventually stabilize and even decrease, I do not believe that is happening now, despite what the media reports. The methodology behind this research, like most surveys, seems to have flaws that could lead researchers to inaccurate conclusions. While the subjects of this particular research may appear only as numbers and percentages, we must remember that these are real children with autism and their families who need help. To minimize the impact of the increase of autism in this country may lead to less support for their unique needs and to less research to find the cause and cure for this lifelong disability. Our children cannot be reduced to a statistic that may or may not be true. Until a cure for autism is found, we parents must speak up for our precious children whose voices have been hindered or silenced by autism. They certainly deserve no less.

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

Sunday, December 31, 2017

Jeers and Cheers 2017

 
Every week, TV Guide Magazine offers a feature entitled “Cheers and Jeers” with brief descriptions of what the writers thought were the best and worst in television for that week. At the end of the year, they do a “Cheers and Jeers” summary for the entire year, a best (“Love it!”) and worst (“Hate it!”) list for the year in review. Like many people do on the last day of the year, I’ve been reflecting on 2017 and coming up with my own “Cheers and Jeers” list for the year. However, since I like to end on a positive note, I’ll flip the order and call this “Jeers and Cheers” for 2017.

Jeers to candida, the bane of our existence! Alex has struggled with candida overgrowth in his digestive tract for years, primarily in the form of thrush that irritates his mouth and throat. Moreover, it just makes him plain irritable and irritating. This year he had a doozy of a case of thrush that lasted for months and required multiple doses of the prescription anti-fungal fluconazole.

Cheers to Alex’s primary care doctor! Not only does he recognize how negatively candida overgrowth affects Alex’s health and behavior, but he also worked closely with us for months, trying to eradicate this annoying condition by prescribing appropriate doses of medication. At Alex’s annual physical last week, his doctor told us that he couldn’t see any signs of thrush, so hopefully, we have this under control going into the new year.

Jeers to the mainstream media who chose to downplay or ignore the new autism statistics released by the U.S. Centers for Disease Control that show 1 in 36 kids have autism and 1 in 28 boys have autism! Perhaps following the “Me, too” movement of victims of sexual harassment, parents of children with autism need to start a social media blitz indicating “Mine, too,” to share the widespread impact of autism upon our children.

Cheers to ABC for adding to their fall line-up, The Good Doctor, a wonderful show featuring a main character with autism! Not only does actor Freddie Highmore do a fantastic job of portraying a young man with autism, but also he makes Dr. Shaun Murphy loveable in spite of his impaired social skills.

Jeers to whatever suddenly made Alex a picky eater this year! Although many children and adults with autism are picky eaters, Alex has always had an excellent appetite and was willing to eat nearly any foods we gave him. Currently, he has limited his diet to fruit, Jello, Rice Dream, coconut milk smoothies, and scrambled eggs with spinach herb seasoning. This change in his eating habits has made me quite empathetic to those parents whose children refuse to eat most foods.

Cheers to whatever suddenly made Alex decide that he wanted to eat pepperoni last week! He asked me a few days ago if we had any pepperoni, and when I bought some for him at the store I had doubts that he would eat it. However, this is his new favorite food, and we’re happy that he is moving away from the vegetarian (fruitarian?) diet he’s adopted for the past eight months. Fingers crossed he’ll come up with some new ideas of foods he’d like to eat in 2018.

Jeers to losing two terrific members of Alex’s support team! His case manager and the representative from the agency that provides respite care both took other jobs, and we are sorry to see them go. Their enthusiasm, expertise, and efficiency made them outstanding, and both of them were especially kind to Alex. We hope that their replacements will do a good job, too.

Cheers to our fantastic long-time members of Alex’s support team! Even though his behavioral therapist and music therapist are now in supervisory positions and his respite care worker has another full-time job, they have continued to keep Alex on their caseload when they had to let other clients go. We are extremely thankful for these three whose kindness, dedication, and patience have helped Alex make significant progress.

Jeers to the manufacturer of paliperidone that had to recall their medication because the time-release aspect did not work properly! Apparently, this company has decided to cease production of the drug, creating a shortage.

Cheers to how well Alex has responded to medication reduction this year! With the shortage of paliperidone, we cut his dose in half this month with the blessing of his psychiatric nurse practitioner, and he has done remarkably well. In addition, he weaned off one medication completely this year, and he is on a lower dose of another. Praise God that he doesn’t need as many medications to remain calm and content!

Jeers to anxiety that makes Alex’s life more difficult! Like his mother, he thinks too much and worries about things that will likely never happen. Nonetheless, his fears are very real to him, and he relies upon schedules and lists to help him cope.

Cheers to the coping skills Alex has learned through behavioral therapy! Now, instead of escalating into agitation and meltdown, he has learned to express his feelings in a reasonable way, telling us that he’s upset. He’s also learned that sometimes he needs to sit and be quiet, but other times he wants to discuss what’s bothering him. This learning to be in tune with his feelings has been a huge improvement and a help to him and to us.

Jeers to the majority of autism research that does nothing to help families currently struggling with autism! Moreover, while certain factors contributing to autism exist, most mainstream medicine ignores these potential causes.

Cheers to the work of Professor Chris Exley of Keele University in England, who has discovered a link between aluminum toxicity and Alzheimer’s disease and autism! Moreover, his research indicating the value of drinking silicon-rich mineral water, such as Fiji and Volvic, gives hope that a simple solution may exist to lessen the effects of aluminum in the body.

Jeers to the obstacles autism presents! From impaired language to difficulties with social skills to health issues to poor motor skills, autism makes life harder than necessary. Add in intense anxiety that can lead to aggression and the tendency to wander from places of safety to ponds, railroad tracks, and highways, and people with autism are put in grave danger.

Cheers to the progress Alex has made in 2017! Thanks to God’s blessings and healing, along with Alex’s tenacity, he continues to overcome challenges and get better with time. May the coming year 2018 bring our children with autism health, happiness, and hope!

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

Sunday, December 24, 2017

"All Is Calm; All Is Bright"

 
I don’t like change; in fact, most of the time I’m perfectly happy staying in a familiar rut. Sometimes, God has to give me multiple signs in order for me to do something different, to step out of my comfort zone. Recently, a series of small jolts pushed us to make changes in Alex’s best interests, and so far, the results have indicated that doing something new was absolutely the right decision.

About two weeks ago, when I went to pick up Alex’s medications at the pharmacy, one of them mysteriously was not with the others. The pharmacy technician was puzzled as to why it was missing, but assured me she would check on it and felt confident it would arrive that afternoon. Later in the day, I received a call from the pharmacy that the medication still had not arrived, but they would order it again and hoped it would be ready for pick up the following day. Even though I was confused about the delay on the arrival of the medication, I wasn’t that concerned because I still had a week’s worth.

The next afternoon, I had a message on our answering machine from the pharmacy that not only had the medication still not arrived, but it was also on backorder, and they didn’t know when they could get it. Now I was getting nervous. I called the pharmacy to find out more, and the pharmacy technician told me the company that manufactured that particular drug had stopped producing it. A Google search after I got off the phone gave a hint as to why they suddenly stopped manufacturing it; they had to recall several batches of this time-release drug because apparently it was not properly releasing the doses throughout the day.

When I asked the technician if they could get the medication from another company, she told me that it was the only company who made the drug. Knowing that was not correct because in the past Alex had taken the medication made by another manufacturer, I told her there was another company, but she insisted there was not. (Another Google search confirmed that I was correct as I found the name of the other company.) She did tell me another store in a nearby town had some, but we would have to transfer the prescription and go to pick up the pills ourselves. Not happy with the news she had given me, I nonetheless thanked her for the information and hung up the phone to ponder our options.

At this point, I was verging into panic mode. What were we going to do if we couldn’t get this medication for Alex? I decided to go to the pharmacy the next morning and talk to a pharmacist in person and explain my concerns about finding the medication soon. The pharmacist understood my concerns and immediately tried to track down Alex’s prescription. She scoured the warehouse records, tried to order more, and even called a competitor’s pharmacy to see if they had any in stock. In addition, she passed along the information to the pharmacy manager, including the name of the other company that manufactures the drug, which I had given her.

The next day I received notification that Alex’s prescription had been filled, which came as a huge relief. When I went to pick up the pills, there was a note that they had gotten them from the store in the nearby town––saving us a trip there––and that they were still trying to track down this medication from their warehouse. While I was delighted to have enough pills to administer twice a day for a month, we still don’t know if the pharmacy will be able to get more next month. Perhaps this was God’s way of telling me it was time to wean Alex off this medication, as we had done with two others successfully.

Contacting the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety, I sent her an email explaining the shortage of this particular medicine. First, I asked her what medication could substitute for the one he’s been taking, and then I asked if we could try weaning him off the medication by forgoing the nighttime dose, since he’s sleeping and wouldn’t be bothered by possible side effects as much. In her email response, I found out the replacement drug is one I really don’t want Alex to take because it has terrible side effects. However, she did agree that he could try not taking the nighttime dose and see how he does.

After discussing our options with Ed, we agreed that now is the time to try taking Alex off the nighttime dose since he’s doing well managing his anxiety. So, last Monday, for the first time in years, we did not give Alex the nighttime dose of that medication. Although I worried that he might have trouble going to sleep or might wake in the night or could wake up in the morning irritable without that dose, he fell asleep easily, slept peacefully through the night, and awakened in a sweet mood. Moreover, he was sweet natured every day last week, despite having his medication reduced by half. Clearly, taking away the nighttime dose was the right thing to do, and we are thankful that he doesn’t seem to be having any negative side effects from this change.

Early Thursday morning, Alex awakened me around 4:30 A.M., and a sense of dread awakened with me. Was the lack of medication affecting his sleep, and would he be agitated? No, he simply wanted to inform me that the power had gone off briefly in the night, and he calmly told me that his alarm clock wasn’t working. As I stumbled into his darkened room, half asleep and terribly nearsighted, I tried to see what was wrong with his clock, plugging it in different outlets, but having no luck.

Since time is very important to Alex, even in the night, I was concerned that he would be very upset that his clock would not work. No, he sat calmly on his bed, even amused that I was clumsily doing everything I could to make his clock work. Finally, I told him that his clock was broken, but I would go to Target when they opened and buy him a new one. Completely satisfied and not a bit irritated, he smiled, crawled under his covers, and went back to sleep. If I had any lingering doubts about taking away the nighttime dose of medication, they were gone. Alex calmly handled a situation that could have upset him in the night without the medication regulating his mood. There in the dark, sleepy, and half-blind, I saw clearly: God had planned this all along.

Because we were content with how well things were going, we weren’t going to initiate medication changes. However, God knew that Alex no longer needed this medication at night and put us in a situation where we feared that we wouldn’t be able to get more. Despite our fears that the change would be hard on Alex (and by association, us, too), he has dealt with the medication reduction beautifully, even in a situation that could have upset him. Once again, we were reminded that God knows what Alex needs better than we do, and we simply need to trust Him, pray for guidance, and be willing to embrace changes instead of fearing them. Tomorrow, as we celebrate the birth of God’s son, I pray that my faith will be more childlike––like my son’s––as I wait with anticipation, trying to be fearless and accepting changes, knowing that God’s plans for Alex’s life are better than anything I can imagine.

“They were terrified, but the angel reassured them. ‘Don’t be afraid!’ he said. ‘I bring you good news that will bring great joy to all people. The Savior––yes, the Messiah, the Lord––has been born today in Bethlehem, the city of David!’” Luke 2:9-12

Sunday, December 17, 2017

Twenty-six

Yesterday Alex turned twenty-six. To be honest, celebrating birthdays with a child who has autism presents challenges. Over the years, we’ve learned to keep things as low key as possible so as not to overwhelm him on his special day. Moreover, I try not to focus on the milestones I had hoped he’d reach by each increasing age and instead be grateful for the progress he has made in the past year. Twenty-five was a good year for him, despite the bad bout of thrush he's had and the diminished appetite he’s had for the past seven months. Alex has shown maturity in handling anxiety, learning when he needs to talk about his feelings and when he just wants to be alone to figure out his thoughts. He has also developed his social skills to the point we are able to take him many different places, such as concerts and sporting events, and know that he will behave himself and enjoy the activity. These are blessings we don’t take for granted.

Perfectionist that I am, I wanted Alex’s birthday to be perfect. For weeks, I have thought about what gifts he might enjoy. He rarely if ever offers any suggestions, so I’m basically on my own for coming up with ideas. Nonetheless, Internet shopping conveniently allows me access to a wide array of products that suit his interests. For my Chicago Cubs fan, I ordered a Cubs drinking cup, a Cubs 2018 calendar, and an Anthony Rizzo ornament for our Christmas tree. Since he loves Wheel of Fortune, I ordered a hat and t-shirt with the Wheel of Fortune logo. In addition, I found him a Boogie Board Jot electronic notepad to write his beloved lists and a fun dice game to play. Of course, I also went with the annual tradition of getting him his cherished World Almanac.

Although he was pleasant while opening his gifts, he was also a bit subdued. Because his fine motor skills are poor, opening gifts isn’t easy for him, and he has to destroy envelopes to remove the cards inside. Nonetheless, he never complains about how his lack of dexterity makes getting to the gifts more difficult and seems to prefer wrapping paper to gift bags. After he opened his presents and thanked us, he trotted off with his World Almanac and retreated to his bedroom to read.

As Ed and I checked on Alex throughout the day, he seemed to want to be alone to read his new book, but he complained of stomachache a few times and asked for baking soda water. He had taken his regular Friday dose of antifungal for thrush the day before, so we assumed that the upset stomach was probably related to that. Knowing that he probably wouldn’t eat much but wanted his favorite food, shrimp, for his birthday, we went and got Chinese takeout food. Even though he loves shrimp kow, he only ate a few bites before telling us he was full. Ed was able to convince him to eat a little more, but he wound up eating his standby dinner of the past few months of scrambled eggs and applesauce instead.

Because Alex has limited his diet to only a few foods, I have been wracking my brain to think of a birthday cake––gluten-free and dairy-free as well––that might appeal to him. Since he loves applesauce, I decided to bake an apple cake from scratch with a very soft texture and an appealing smell, thanks to the cinnamon sugar on top. I even cut the apples into tiny pieces so that they would be easy to eat. To make the cake more special, I found coconut milk whipped topping that tastes just like Cool Whip. Despite my best-laid plans, Alex took one bite of the delicious cake and spit it out. After making sure he didn’t want any, despite my usual patience, I took the cake and threw it in the garbage in frustration. Fortunately, I had made another cake with regular milk and flour so that my parents, who had come for Alex’s birthday, and Ed and I could enjoy the tasty treat. Nonetheless, I was disappointed that Alex didn’t like the cake I had made especially for him.

Although he was calm and pleasant, Alex didn’t say much while my parents were here, and eventually he went up to his room while the four of us visited. Before they left, Ed went up to get him to say goodbye, expecting to find him resting. Instead, he discovered that Alex was having a fine time doing what he wanted to do. In a rather odd combination, Alex was watching You Tube videos on his iPad, specifically Bruce Springsteen singing “Santa Claus Is Coming to Town” while reading a New Testament Bible my aunt and uncle had given to him a while ago. Even though he was enjoying this alone time with the Boss and the Bible, Alex came downstairs to say goodbye to my parents nicely.

Perhaps Alex doesn’t want to make as big a deal about his birthday as I do; he seems more excited about the upcoming birthday of Jesus instead. While I thought I had let him down because he didn’t seem as enthusiastic about his birthday gifts, meal, and cake, I may have misinterpreted his behavior. When he was getting ready for bed, I asked him what he liked best about his birthday, and he told me it was the shrimp. (I shouldn’t have been surprised since shrimp is one of the special things in life Alex rates at 100%.) When I asked him what he liked least (anticipating the cake he spit out disdainfully), he earnestly told me, “Nothing.” This was certainly reassuring for me.

As we approach Christmas in the coming days, I need to remember that life––especially life with autism––is not going to be perfect, no matter how much I plan. However, Alex doesn’t expect perfection from me; he’s content with a good book, a familiar tune, and the peace that comes from knowing that we love him and that God is watching over him. During this Christmas season, may we all know that simple joy, peace, love, and faith!

“Look! The virgin will conceive a child! She will give birth to a son, and they will call him Immanuel, which means ‘God is with us.’” Matthew 1:23

Sunday, December 10, 2017

"Repeat the Sounding Joy"

 
Last Sunday, we took Alex to Tuba Christmas, a wonderful annual concert held in Valparaiso University’s beautiful Chapel of the Resurrection. Although Alex has enjoyed this concert in past years, we had a little bit of trepidation as to how he might react this year, due to his recent increased sound sensitivity. In fact, last month we had to leave a jazz concert early because he covered his ears and told us the loud music bothered him. We hoped that the much larger venue would help make the sound of the music less intense for him and that the lower brass sounds would bother him less than the shrill trumpets and saxophones at the jazz concert. Just to be sure, we sat in the back of the chapel, where he would be farther away from the musical instruments and where we could leave quickly if he became overwhelmed.

Despite the large crowd, Alex seemed comfortable while waiting for the concert to begin and studied the lyric sheet given to us as we entered. As the first song played, he began to sway to the music and was clearly content. For this concert, the musicians play familiar Christmas carols once and then have the audience sing along the second time they play the song. Alex used his index finger to follow along with the words to the songs and smiled as he sang softly to the familiar tunes, several of which he sings each week with his music therapist.

During the second song, a family came and sat behind us, and one of them was obviously excited to be there. I tried to turn subtly to see the young man who was singing with such enthusiasm, but I couldn’t see his face. However, as I turned, his mother recognized me and said hello to Alex and me; she is an awesome autism mom we know. Her son with autism is a little younger but more verbal than Alex, and at the end of each song, he happily exclaimed, “Wow! That was great!” I knew Alex felt the same way as the other young man; even though Alex didn’t say much, he grinned and shuddered with joy.

As I looked around the packed chapel, I saw many people checking out their phones instead of being totally present in the moment. None were as engaged as the young man sitting behind me and my son sitting beside me. Truly, these two embodied the “joyful and triumphant” described in “O Come All Ye Faithful.” Even though autism has presented obstacles that make their lives more difficult, they find joy and triumph in listening to music and singing Christmas songs.

At the end of the concert, the young man proclaimed, “That was the best Tuba Christmas EVER!” When I asked him if he had fun, he enthusiastically told me he did. While Alex was less vocal in his praise, he quietly but happily told us that he liked the concert “one hundred percent” and said that he wanted to come back for Tuba Christmas again next year. I’m glad we didn’t allow our concerns about having to leave the jazz concert early last month prevent us from taking him to this concert because Alex clearly enjoyed himself, and we had the opportunity to share the joy of the holiday spirit with a family like ours, raising a young man with autism.

Of the dozen or so songs we sang that afternoon, the one that best reflected the eager anticipation of our sons with autism was “Joy to the World.” While others may be caught up in holiday tasks of buying and wrapping gifts, decorating houses, baking goodies, and sending cards, Alex spends December looking forward to his own birthday and that of Jesus. Reminding us to celebrate, the song provides the reason why: “Joy to the world! The Lord is come. Let earth receive her King. Let every heart prepare Him room.” Certainly, the two young men with autism sitting in the back of the chapel where they wouldn’t bother anyone were ready to receive their King; their hearts, filled with childlike faith, had already prepared room for Him. In the last verse of the song, we are reminded repeatedly to “repeat the sounding joy,” something we sometimes forget, but an important detail our sons remember.

As the days preceding Christmas dwindle, I am thankful that Alex reminds me daily to savor the anticipation leading up to his favorite holiday. When I feel frustrated or disappointed that his life isn’t as I had hoped it would be because autism has created challenges for him, I think of him and my friend’s son happily singing Christmas carols in the back of the Chapel of the Resurrection. At the front of the chapel, the statue of Christus Rex, Christ the King, joyfully and triumphantly lifts His hands in victory, assuring me that all will be well in the end. Indeed, “Repeat the sounding joy!”

“But the angel said to them, ‘Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; He is the Messiah, the Lord.’” Luke 2:10-11

Sunday, December 3, 2017

Unlucky 13: Aluminum Toxicity in Autism

 
A few days ago, new research published in the Journal of Trace Elements in Medicine and Biology showed “shockingly high” levels of aluminum in the brains of teenagers diagnosed with autism. [To read an excellent article from the Children’s Medical Safety Research Institute, who funded this study, please click here.] Compared to previous brain studies of people who did not have autism, those with autism had much higher aluminum levels found in all four lobes of the brain. In fact, the results of this study found “some of the highest values of aluminum yet measured in human brain tissue.”

The author of the study, Dr. Christopher Exley, Professor in Bioinorganic Chemistry at Keele University in England notes the potential impact of high levels of aluminum upon the brain, stating, “…these very high concentrations of a neurotoxin in brain tissue are not going to be benign and will contribute to neurodegeneration in affected tissues.” Dr. Exley, who also published recent research regarding high levels of aluminum in the brains of those who died of Alzheimer’s disease, poses an important question: “One has to wonder why aluminum in the occipital lobe of a 15-year-old boy with autism would be a value that is at least 10 times higher than what might be considered acceptable for an elderly adult?”

So how did the aluminum get into the brain in the first place? This research indicates that inflammatory cells loaded with aluminum cross the blood-brain barrier. A potential source of this aluminum is adjuvants from vaccines. Adjuvants are used to improve the immune response in vaccines, according to information from The Children’s Hospital of Philadelphia [To read this report, please click here.] CHOP asserts that the maximum amount of aluminum that an infant following the recommended vaccine schedule for the first year would receive is about 4 milligrams, which they assure is a safe level, especially compared to the aluminum they may be also ingesting from breast milk or formula. Although aluminum is a known neurotoxin present in food that apparently cannot be avoided, they, nonetheless, still recommend injecting infants with additional amounts that can end up in their developing brains.

In addition, they also note that aluminum from vaccines enters the bloodstream, whereas aluminum from food enters the intestines, where less than one percent is absorbed into the blood. To reassure parents, they state, “The ability of the body to rapidly eliminate aluminum accounts for its excellent record of safety.” Even though aluminum is present in DPT, Hib, and hepatitis shots routinely given to infants, this should not concern parents, according to CHOP’s position.

But what about those infants whose ability to eliminate toxins from their system has been compromised, as is frequently found in children with autism? Children with autism often have toxic metals in their system that their bodies have not purged. For example, tests revealed that Alex had toxic levels of arsenic, mercury, lead, and aluminum. Since his body could not detox itself, he had to go through chelation therapy in which he took DMSA, sulfur-based pills designed to bond with the toxic metals and remove them from his body. In addition, he took magnesium glycinate supplements to reduce his aluminum load. To prevent further accumulation of aluminum, we don’t cook his food in aluminum pans, and he has used aluminum-free deodorants for many years. (He currently uses Arm and Hammer’s Essentials deodorant with natural deodorizers and no aluminum or parabens.) He regularly takes baths with Epsom salt, which is magnesium sulfate, to detox his body. Most importantly, he has not received any more vaccines in the past twenty years. Nonetheless, I still wonder how much damage aluminum adjuvants from his childhood vaccines have done to his developing brain. How many children and adults with autism are suffering the ill effects of aluminum poisoning similar to those found in elderly Alzheimer’s patients?

Certainly, more research needs to be done regarding why people with autism may have more aluminum in their brains, the impact this neurotoxin may have upon their behavior and learning, and how to heal their brains. Another report that received very little attention in the mainstream media last week involved the new statistics released by the National Health Center for Health Statistics regarding the prevalence of autism. [To read an outstanding article on this topic, please click here.] In honor of my son who loves numbers and statistics, I offer the following shocking percentages and ratios:

The rate of autism spectrum disorders for 2016 is 2.76%.

That translates into 1 in 36 American children with autism, up from 1 in 45.

Since autism is more prevalent in boys, the rate is 1 in 28 boys born between 2014-2016.

NCHS statistics indicate a 147% increase in children with autism in less than a decade.

Our society is ill-prepared to care for the multitude of children with autism who will become adults with autism. Consequently, more research must be done to find a cure for autism now. Maybe aluminum holds the key to this mystery and needs further investigation, and perhaps the effect of aluminum adjuvants should be considered. I'm not a doctor––just an autism mom looking for ways to help my child heal. However, I do know that God has a divine plan, and I must have faith to wait for the “appointed time” that He has promised.

“For the vision is yet for the appointed time; It hastens toward the goal and it will not fail. Though it tarries, wait for it; For it will certainly come, it will not delay.” Habakkuk 2:3

Sunday, November 26, 2017

Christmas Shopping for Kids and Adults with Autism

 
When I was a kid, my siblings and I eagerly awaited the arrival of the Sears Christmas catalog in the mail every November. Known as the Sears Wish Book, the catalog was published annually from 1933-2011. I imagine that in many households, children often impatiently waited their turns to see what the catalog displayed so that they could dream of what Santa would bring them. My brother, sister, and I used the Wish Book to make lists of what Christmas gifts we wanted each year, and every year my brother had to edit his lengthy list. Apparently realizing customers missed that annual tradition and the nostalgia that surrounded it, Sears revived the Wish Book this year with an online edition at their website and a limited printed version for their best customers.

Although the Wish Book was a staple of my childhood, Alex has grown up in the computer age where online shopping and the seemingly endless availability of products on Amazon have changed holiday shopping. By typing in a few clues, I have been able to find gifts that matched his unique interests. For example, his love of the irrational number pi led me to find a door-sized poster with the first one thousand digits of pi, a pie plate with the symbol of pi and several digits, a roll-up tape measure with several digits of pi, and several books about his favorite mathematical concept.

While others are out shopping on Black Friday, I’m home with my laptop scouring possible gifts for Alex. Added to the challenge of finding Christmas gifts he will love is the arrival of his birthday nine days before Christmas. In addition, he rarely gives any suggestions about what he would like, so I’m often working without the lists my siblings and I were kind enough to supply to my parents when we were kids.

Fortunately, other parents facing similar dilemmas of buying gifts for their children with autism have offered ideas and suggestions in helpful online lists. I recently discovered a great blog entry on the Recovering Kids Blog entitled, “Top 25 Foolproof Holiday Gift Ideas for Kids with Autism” that introduced me to the Boogie Board Jot. [To read this article, please click here.] After reading about the Boogie Board Jot, an LCD eWriter for writing lists and drawing with a stylus that can be erased with a push of a button, I knew this was ideal for Alex and his need to jot lists. Some comparison pricing online led me to ordering it from Best Buy, which also had free shipping.

Another great site for shopping is National Autism Resources, which offers a “Toy and Gift Guide for Autistic Kids and Teens.” [To see this list, please click here.] This user-friendly list allows the parent to shop by the age of the child and the type of toy, which is very helpful. Recognizing that many parents of children with autism seek toys that are not only entertaining but also educational, these toys are categorized under the skills they help teach and needs they help meet, such as gross and fine motor, calming, sensory, and social skills.

In gift giving, parents often need to think outside the box because our kids have unique interests and needs. When we find the right gift for our kids, we like to share those ideas with others who might also benefit from our fortunate finds. For example, Alex’s interest in astronomy and meteorology led me beyond books to three gifts that play essential roles in his daily/nightly living and are as important to his bedroom as the furniture. For example, Moon in My Room by Uncle Milton (available at many stores and online) hangs on the wall across from his bed. Using a remote control, he can click on various phases of the moon to light up the battery-operated moon. With an automatic shut-off device, the moon acts as a night light he turns on when he goes to bed but turns off on its own about the time he falls asleep. I think Alex also likes Moon in My Room because it reminds him of one of his favorite childhood bedtime stories, Goodnight Moon. Nonetheless, this Christmas gift continues to be a big hit with him.

After trying various star projectors that illuminate Alex’s ceiling with stars, we finally found one that doesn’t burn through batteries and bulbs quickly. The Vicks Starry Night Cool Moisture Humidifier runs on an electric plug and projects color changing stars on the ceiling with or without the cool mist humidifier. In the winter, the humidifier does double duty by providing moisture for the dry air and entertainment at night with the colorful stars.

Along with astronomy, Alex also has a keen interest in meteorology, and we have gone through a variety of weather stations over the years. A few years ago my brother found a terrific colorful weather station as a Christmas gift for Alex, and it’s one of his prized possessions. Sitting on his bedroom dresser, Alex checks it first thing in the morning and right before he goes to bed, as well as multiple times throughout the day. Alex likes knowing the current weather, indoor and outdoor temperatures and humidity, and the daily high and low data. In addition, this weather station shows the current time and date, two vital pieces of information for Alex. On this small screen, Alex has most of the information he thinks he needs to know every minute of the day. Needless to say, it was a perfect gift for him.

Another great source of entertainment and education, card games by Gamewright, which are available in many stores and online, can teach children and adults many valuable skills. Simply handling the cards helps develop fine motor skills, playing games teaches turn taking and other social skills, and the Gamewright games often address language skills. On Black Friday, I found various Gamewright card games on sale at the Kohl’s website that I thought would be fun and help increase Alex’s social and language skills. For example, Fitz It has the players name objects the fit the descriptions on the game cards, such as naming an object that “comes in a box” and “fits in a blender.” In Think ‘N Sync, players try to match answers to a given prompt, such as naming an ice cream flavor or a sport with halftime. This strikes me as a good way for people with autism to realize that other people may think differently than they do. In the Over Under Game, “The Game of Guesstimates,” players make their best guess and then check the correct answers to see if they were over or under in their estimates. For example, one of the six hundred questions is “How far away is Pluto?” This kind of trivia involving numbers is right up Alex’s alley, and he will probably memorize the answers, making him an even tougher opponent when we play along with Jeopardy every weekday.

Speaking of Jeopardy, for those who love game shows, as Alex does, Jeopardy and Wheel of Fortune have online merchandise stores. Last year, I found a Jeopardy baseball cap for him on their site, and he now wears that hat whenever he watches the show. I believe it’s his thinking cap. This year, I found a similar one for Wheel of Fortune so that he can wear that cap when he’s watching Pat and Vanna and contestants solving puzzles every night.

While finding gifts our children will enjoy and perhaps even use to learn important skills can be tricky, especially when they have autism and unique interests and needs, the Internet has made Christmas shopping much easier. The availability of helpful search tools and parents sharing valuable tips makes shopping for our kids less stressful. With Cyber Monday tomorrow, many online stores will offer discounts and my personal favorite––free shipping––so that parents can not only find gifts for their beloved children but also save some money, as well. Until the gift of healing arrives, we search for those gifts that help our children learn and, more importantly, bring them joy.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” Matthew 7:7