Sunday, March 26, 2017

Book Review: Look Into My Eyes

 
A few weeks ago, British author Dan Jones contacted me and asked if I’d be interested in reviewing the recently released second edition of his book Look Into My Eyes. In his email, he explained that he had written an autobiography last year describing growing up with Asperger’s syndrome. In the second edition, he decided to include helpful tips based upon his experiences as well as a chapter written by his wife explaining what it’s like to be married to someone with Asperger’s. Since I am fascinated to learn more about the perspective of those on the autism spectrum, I was pleased to accept Dan’s offer to share his book with me and to share my impressions of his writing.

Now in his late 30’s, Dan Jones was not diagnosed with Asperger’s until he was a young adult. After being diagnosed, he has worked with children of all ages on the autism spectrum and their families. Because of his experience with having Asperger’s and his ability to articulate his experiences, he is able to help children with autism and their families so that they can better understand traits commonly found in autism. He explains that the purpose of writing his book is to give hope to parents of children with Asperger’s syndrome and to people with Asperger’s syndrome. Moreover, he finds that writing helps him understand himself better. For him, writing is ideal because he can learn new things, share knowledge, and spend time alone––all of which are important to him.

While the book is primarily organized chronologically, going from his early childhood to adulthood, at times he repeats ideas and seems to ramble from one idea to another. He himself recognizes this quality, noting that his mind works this way. Consequently, his writing allows the reader to see how the mind works in Asperger’s syndrome. For the neuro-typical reader, his writing has a conversational feel that often flows in a stream of consciousness, and the movement from one idea to another is quite interesting. While he does repeat certain concepts throughout the book, he ties these ideas to various stages in his life and explains their significance clearly. Having lived with a child on the autism spectrum, I found these repeated references familiar and understood Dan’s need to make points evident through repetition. Furthermore, I was amazed by how detailed his descriptions are in relating incidents from his childhood, making them quite vivid for the reader.

Throughout the book, Dan describes the difficulties of dealing with sensory overload and social skills, which are common obstacles in autism. For example, he clearly explains the overwhelming sensory issues caused by the irritation of clothes, “busy noises,” “uncomfortably bright” sights, and “so much to try to focus on and keep track of.” As a child, he preferred adults to peers, who bullied him. He notes that he gravitates toward those who share interests with him, but he finds making friends difficult. He states, “I have never been good at making and keeping friends because I have no interest in making and keeping friends.” Moreover, he describes that as a child, “I was happy to sit alone in a corner somewhere; I didn’t feel a need to seek out the company of others.” As a parent, I have wondered whether Alex feels lonely not having peer friends, but if he shares Dan’s perspective, he may not care about having friends and may prefer his own company anyway.

In reading Dan’s description of his childhood, I found many similarities between him and Alex. For example, he describes himself as mostly calm and quiet, but he would get upset when plans were changed; I would describe Alex in the same way. Also, like Alex, he didn’t care whether he won or lost games; he simply wanted to do his best and stick to the rules. In addition, Dan describes enjoying one of Alex’s favorite things to do: imitating sounds and voices. Like Alex, he explains that he didn’t realize imitating people can be offensive, and he must work at not copying how people speak. Another similarity they share is a love for learning as well as learning to read at an early age and preferring nonfiction to fiction. I especially appreciated Dan’s explanation of his preference for nonfiction. He explains that he doesn’t see the point of reading something that is not real. Yet another likeness is that Dan describes himself as a good eater, which Alex is, too. However, I found Dan’s reasoning for being a good eater surprising. He explains that eating gives him something to do when others are around, and he doesn’t have to interact with them. In contrast, I think that Alex’s love of eating is not just a way to avoid social interaction; he seems to enjoy the act of devouring food, as well.

A major focus of the book is hypnosis, one of Dan’s main interests and the inspiration for the title of the book. When he was thirteen, he saw a television show about hypnosis and began reading books on the topic. He states, “I thought hypnosis might be the ultimate way of controlling the world around me so that people left me alone when I wanted to be left alone, and so that I didn’t have to do things I didn’t want to do.” Although he discovered that hypnosis didn’t give him that control, he found that it helped develop his social skills. He explains that hypnosis requires observation, copying other people's behavior, and communication skills, all of which improved his rapport with others. In addition, he was able to develop eye contact, which is often difficult for people with autism, learning to look through and past people when he could not look directly at them.

In this second edition of the book, he has included a chapter written by his wife, Abbie, whom he credits with helping him make positive changes, by encouraging him to be more emotional and to socialize with others. She describes dealing with his bluntness and his obsessions, but notes that they have built a strong relationship. This second edition also offers comprehensive tips and strategies for people with Asperger’s as well as their families, friends, and teachers. He emphasizes the need for developing social skills and using relaxation techniques and offers practical tips for coping with daily life. Moreover, he explains that people with Asperger’s need routines, structure, consistency, and support. In addition, he encourages people with Asperger’s to communicate their needs, such as asking for help.

Dan Jones’ second edition of Look Into My Eyes not only provides practical advice for people with Asperger’s syndrome, but also allows others a glimpse into the amazing mind of someone on the autism spectrum. While the reader may be boggled at times by the vivid imagery and details Dan Jones recollects from his life, one sees how brilliant, indeed, that mind truly is. Moreover, one can’t help but admire and appreciate the candor the author willingly provides in sharing his experiences in hopes of helping others. As we look into Dan’s eyes, we hope that we might see more clearly what is behind the eyes of those children on the autism spectrum who bless our lives with their unique perspective.

“The Lord replied, ‘Look around at the nations, look and be amazed! For I am doing something in your own day, something you wouldn’t believe even if someone told you about it.” Habakkuk 1:5

Sunday, March 19, 2017

Aggression and the Brain Stem

 
A recent study published last month in the journal Research in Autism Spectrum Disorders reports that children with autism who have smaller brain stems are more likely to be aggressive. [To read an article about this research, please click here.] Under the direction of Brigham Young University assistant professor of psychology Rebecca Lundwall, the research team studied MRI images of two groups of children with autism: those who were highly aggressive and those who were not.

The research team is investigating the connection between autism and aggression in hopes of finding better intervention. Study co-author and BYU assistant professor of school psychology Terisa Gabrielsen notes that aggression in autism “impacts families’ quality of life so significantly.” Moreover, she states, “If we look long-term at things that affect the family the most, aggression is one of the most disruptive.”

The brain stem controls the flow of messages between the brain and the rest of the body, namely basic body functions, including breathing, heart rate, blood pressure, swallowing, and digestion. As BYU clinical psychology Ph.D. student Kevin Stephenson notes of the connection between the brain stem and aggression in autism, “...so this is evidence that there’s something core and basic, this connection between aggression and autism.”

Study coauthor and BYU professor of psychology Mikle South notes the need to discover triggers that overwhelm children with autism before they display physical reactions, such as sweating or rapid pulse. He states, “Some of these kids, if the brain isn’t working as efficiently, they may pass that point of no return sooner.” He, therefore, emphasizes the need to use behavioral interventions “early before that arousal becomes too much.”

Recognizing that the areas of the brain work together, the research team plans to study how the brain stem works with other areas of the brain. As team member Kevin Stephenson notes, “So if one area is disrupted, it’s likely that other areas are disrupted, as well.” Moreover, they plan to seek possible mechanisms linked to arousal and aggression.

This research on aggression and autism and the possible link to the brain stem holds particular interest for me because exactly five years ago yesterday we had to hospitalize Alex for extreme anxiety and aggressive behavior. After desperately trying to find help for him for several months, an especially aggressive outburst necessitated calling the police to help us restrain him, and we knew that we had to have him placed in a psychiatric ward for his safety and ours so that he could get the intensive help he needed to get better.

The months leading up to the hospitalization were heartbreaking and terrifying. Our son, who had been docile and sweet natured most of his life, had become an angry young man, whose unpredictable behavior meant that he could fly into a rage at any moment, physically attacking us and hurling anything he could get his hands on. We had taken him to various professionals, yet no one had answers. In the middle of the night, after Alex was subdued by Ativan, I made a phone call to a hospital in the next county and found that they would take him if we brought him to their emergency room. We headed out in the darkness, and in the morning light, he was finally admitted to behavioral medicine.

Without a doubt, hospitalizing Alex was the hardest decision Ed and I ever had to make. However, we can look back on that decision and say without a doubt it was the best decision we ever made for Alex. God had led us precisely to the place and the people who knew how to help Alex get better. After weeks of developing a medication plan, they were able to get under control the anxiety that plagued Alex and made him aggressive. Their social worker guided us to resources that allowed Alex to receive support services he needed to continue coping with anxiety, such as behavioral therapy and music therapy.

Five years later, we are thankful that we regained our sweet, docile son who can manage anxiety with proper medication and the calming techniques he has learned in therapy. Perhaps his brain stem is smaller, making him react differently to stresses in life. Perhaps had we known this, we would have pursued behavioral therapy as a preventative method instead of a reactive one. Certainly, investigating how brains of children with autism and aggression differ is a worthwhile pursuit. However, I still believe that we had to go through the trials we did to get to the place of peace and contentment we have now found. God led us through the fires and brought us safely to the other side, better and stronger than we ever thought possible.

“The Lord says, ‘I will rescue those who love me. I will protect those who trust in my name.’” Psalm 91:14

Sunday, March 12, 2017

Explore and Explain

 
Ever since he was a little boy, Alex has always loved learning, to the point we nicknamed him “Mr. Curious.” His precocious reading skills allowed him to do his own research from the time he was a preschooler, and he continues to show an interest in seeking knowledge by reading books and doing Google searches online about topics of interest. If he doesn’t know something, he will “check it out,” as he often says, not satisfied until he finds the data he needs. Like Alex, I love doing research and reading about topics I find interesting. After he was diagnosed with autism, most of my reading and research focused upon autism, not only because I found it interesting, but also because I wanted to understand how Alex thinks and behaves and to find ways to help him.

An article published online this week entitled “Autism And The Drive To Explain And Explore” caught my attention as it deals with how children with autism are motivated to learn. In this commentary, psychology professor Tania Lombrozo summarizes research published by M.D. Rutherford and Francys Subiaul last year in the journal Autism. [To read this article, please click here.] This research focused upon how children with autism differ in how they learn as compared to typical children. While all of the children they tested had the same mental age, the children with autism ranged in chronological age from 3-10, whereas the children who did not have autism were four years old.

One experiment involved a physical task in which children had to turn wooden blocks with pictures of dogs on them so that the dogs were standing up. One of the blocks was weighted and would not stand properly. Researchers observed the children’s reaction to this problem to see if they would try to figure out what was wrong with the block by studying the block or touching the table or by asking the adult for help or an explanation of why the block wouldn’t balance. The children with autism were much more likely to engage in “exploratory and explanatory” behaviors than the typical children, touching the table, asking “why” questions, and providing explanations regarding the problem block.

In another experiment, children were given a social task in which they asked an adult for a sticker by holding out their hands. After a while, the adult ignored their requests to see what the children would do. While the typical children repeated the hand gesture, looked at the sticker or the adult’s face, or tried to get the adult’s attention, the children with autism were less likely to engage in these behaviors. The researchers concluded that in this social task, children with autism did not have an increased “drive to explore or explain.” The researchers suggested that children with autism may have increased drive to explore and explain in some realms but not in the social domain.

The author of the article wisely notes that this research regarding the ways children with autism try to find explanations is new; therefore, drawing conclusions may be premature. Specifically, were the children with autism less interested in the social task, or did they possess the same motivation as the typical children but lacked the skills needed to engage in the social task? However, this research describing children’s “explanatory drive,” or the motivation to explain confusing circumstances, concludes that “children with autism have an exceptional explanatory drive” in physical context but not in social context.

As a teacher and the parent of a child with autism, I question the conclusions the researchers of this study made. Living with “Mr. Curious,” I have seen that “exceptional explanatory drive,” where Alex scientifically studies physical phenomena, trying to make sense of them. If he cannot figure out something by observation, he will ask us questions and/or find a book or an online source to satisfy his need to know. Had he been presented the block puzzle in the research project, I can picture him studying that block, comparing it to the others, and trying to find out why it was different.

However, I can also picture him not engaged in the social sticker-begging activity. First of all, I wonder if a different motivator had been offered if the children with autism might have been more engaged in the task. Perhaps if they had been seeking food or a toy that could do something, they might have been more persistent than just looking to get a silly sticker. (We have never found sticker charts to be useful to motivating Alex. However, the reward of cash or the promise of a fun activity works wonders.)
Moreover, maybe children with autism have superior social skills that were misinterpreted in this research experiment. Instead of pestering the adult who was ignoring them, they gave up asking for a sticker. Maybe they assumed that the person was busy and politely left the adult alone, rather than selfishly pushing their own agenda. Having lived with Alex for more than a quarter century, I have found that he doesn’t bother with people who don’t engage with him, and he doesn’t seem to give slights, whether intentional or not, any thought. His feelings aren’t hurt, and he instead seeks those who do interact with him. To me, this shows a superior sense of social interaction: recognizing those who are worthy of our social efforts and ignoring those who ignore us.

While this research on what motivates children to explore and explain is fascinating, we must be careful not to misinterpret the behaviors observed in the experiments. In real-life settings, children with autism seem to have a strong motivation to learn about the world around them. Their responses to social experiments may not be a lack of motivation, but rather a more reasoned reaction to rewards or people who don’t engage them. Jumping to conclusions that they are not motivated in social contexts shows a lack of understanding about how children with autism perceive other people and fails to recognize that they do, indeed, possess social skills that may even be superior to those of most.

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

Sunday, March 5, 2017

Lent: Striving to Give Up

 
This week, I read a terrific blog entry that offers good advice and points for reflection. Written by special needs mom Barb Dittrich, “4 Things for the Special Needs Parent to Give Up” shares helpful ideas regarding how to approach the season of Lent. [To read this essay, please click here.] As she wisely points out, “Jesus, you didn’t give your life so I could give up eating candy for 40 days. I know you want to transform my life.” With this in mind, she suggests that parents of special needs children give up the following: “Beating ourselves up with guilt,” “Holding grudges against relatives that just don’t get it,” “Expecting perfection,” and “Worrying to excess about our child.” As I thought about her observations, I realized that in one way or another, these ideas pertain not just to special needs parents but to others, as well. Special needs parents simply deal with them in different ways.

GUILT––Certainly, I need to give up unnecessary guilt. I spend way too much time wondering whether something I did or didn’t do caused Alex to have autism. In addition, I feel bad about the things I should have or should not have done over the years that might have helped him. Maybe if I had done something differently during my pregnancy or his infancy, he would not have autism. Maybe if we had done this or that therapy or had done it sooner, Alex might be further along in his progress. This needless guilt does nothing to change the past, present, or future and only wears down energy that could be spent in a more positive way. Even if I did do something wrong, Jesus died for my sins, and I need to accept that grace and know that God has a good plan for Alex’s life and for those of us who love him dearly.

BITTERNESS––I don’t think of myself as a person who holds grudges, but I do at times feel bitter. As a fierce protector of my son, I have felt anger toward those who are not as kind to him as I believe he deserves. While most slights toward him have probably been unintentional, I have wasted time being mad at people who have said things about Alex that I didn’t appreciate. Moreover, I have felt bitterness that autism has caused our lives to be untypical, and I’ve resented people who have “normal” children and “normal” lives. My jealousy has at times kept me from seeing just how blessed I truly am. However, Alex has taught me how not to be bitter. He doesn’t get offended by what others say or think because he doesn’t care, and he doesn’t compare his life to others. He’s quite content to go on his merry way, knowing that in spite of autism, he has a pretty sweet life.

PERFECTION––I only expect perfection of myself, and I’m the only one who expects me to be perfect. My perfectionist nature is partly related to my guilt; I try to make up for my perceived shortcomings as a special needs parent. Maybe if my house is immaculate and I work hard as a teacher and I try to be the perfect mother/wife/daughter/friend, people won’t think it’s my fault Alex has autism.  Of course, that’s a foolish perspective; only God is perfect. Consequently, I need to let myself off the hook and know that I’m doing the best I can in a challenging situation. Nonetheless, old habits die hard, and I will need to work at perfecting overcoming a need for perfection.

WORRY––In more than twenty-five years of being Alex’s mom, I have worried about many things, large and small. The vast majority of those worries never came to pass. The biggest obstacles came out of left field and blindsided us; nonetheless, God helped us deal with every problem that has come along, providing everything we needed. My biggest worry, which all parents share but special needs parents fear even more, is what will happen to Alex if something happens to Ed and me. While my concerns are valid, I know that I need to have faith that God will take care of Alex, whom He loves even more than Ed and I do, just as He has always taken care of him. As Jesus reminded the disciples in Matthew 6:27, “ Can any one of you by worrying add a single hour to your life?” Since I want to live as long as I can in case Alex needs me, I need to stop worrying.

In these days leading up to Easter, just as I do every day (in my perfectionist nature, of course), I will strive to be a better person, trying to get rid of guilt, bitterness, perfection, and worry that drag me down. Instead I will focus on the things that bring me joy (even chocolate), especially Alex, whose unabashed joy and strong faith strengthen me and make me proud to be his mom.

“That is why we labor and strive, because we have put our hope in the living God, who is the Savior of all people, and especially of those who believe.” I Timothy 4:10

Sunday, February 26, 2017

In Thy Light

 
On Monday, Alex had a dentist appointment to fill a small cavity between his two front teeth and to replace a small old filling in a back tooth. Even though the dentist had assured us that there was no hurry to fix these teeth, we didn’t want to wait and risk having the problem teeth get any worse. Besides, after two very successful times of having our family dentist fill cavities for Alex, we felt fairly confident that he would handle the situation well, and we knew that the dentist and his staff would handle Alex very well.

When the dental assistant summoned us back to the room, I realized that she had not worked on Alex before. Invoking my usual introduction to explain and reassure, I told her, “This is Alex. He has autism, but he’s usually very cooperative. We’ll be glad to help in any way we can.” With that I said a prayer that the procedure would go smoothly and hoped that he would live up to the build-up I had given him.

Thankfully, Alex came through the numbing, drilling, and filling like a trouper. Not only did he cooperate, but he also showed good social skills by answering their questions and using his manners. Moreover, he was totally relaxed, all six feet of him stretching the entire length of the dentist’s chair. Because they have always treated him with gentle kindness, he trusted them and had no fears. As our dentist patted Alex on the shoulder and told him what a good job he had done, we couldn’t help but feel pride in our son. When we thanked the dental assistant, she enthusiastically praised Alex, and he rewarded her with a big smile, showing the beautiful work she had done on his front teeth.

Although I’m probably biased as Alex’s mom, when he smiles, a light radiates from him that brings forth joy. However, I must not be the only one who sees that in him because other people have commented on what a great smile he has: his support team, people who wait on him in restaurants, family, friends, and others who have been treated to a smile from Alex. Alex’s smile is so infectious, when he grins broadly and shows his dimple, his behavioral therapist often giggles, delighted to share in his happiness. Seeing Alex smile is a treat, and we can’t help but smile with him.

Yesterday, we took Alex to the last home game of the season for the Valparaiso University women’s basketball team. Even though the team has won just nine games and lost twenty, sometimes losing by double-digit figures, Alex has remained a steadfast fan, only missing one home game. In fact, he plans his entire week looking forward to going to the games, repeatedly checking the basketball schedule and the calendar to make sure nothing will interfere with cheering on his team.

Unlike the men’s basketball games, which he also enjoys attending, the women’s games are subdued with few fans in attendance and a nearly empty student section. At times, the gym is remarkably quiet, more like a library than an athletic facility. Nonetheless, Alex settles into his seat on the bleachers, armed with two orange Gatorades and a small bag of Fritos, ready to follow two hours of basketball. No matter what the score is, Alex smiles through it all, just happy to be in a place that brings him joy. The team may be defeated, but Alex never is, ever hopeful that they will win the next game. Win or lose, he proclaims every game that he liked it “one hundred percent.”

In the last home game, Alex’s beloved Crusaders basketball team enjoyed victory in a game that was never close, winning 72 to 63. Although the players probably never noticed a young man sitting with his parents in the bleachers behind the team bench and always wearing a Valparaiso University sweatshirt, he has been their biggest fan who believed that they could win. As they scored each point, his face lit up with joy, revealed by his big smile and twinkling eyes. After a rather dismal home season, the team rewarded that ever-hopeful fan with a resounding victory, and he was delighted, standing and reading the words to the Valparaiso University fight song as the pep band played at the end of the game.

The motto of Valparaiso University focuses upon light, symbolized by a torch present in the school logo. The motto, “In luce tua videmus lucem,” or “In Thy light we see light” reflects the religious foundation of the university, focusing on the light of God that enlightens us. As the son of a Valparaiso University graduate and a Valparaiso University professor, Alex has grown up seeing that phrase in various places he has visited on campus over the years. Yet, I would venture that few people sense “Thy light” as keenly as Alex does in his abundant faith. Moreover, Alex seems to reflect that light, finding joy in unexpected places, even the dentist’s chair and the bleachers at a basketball game. How blessed we are that God shines his light through Alex, reminding us of His presence in our everyday lives and His promises for eternal life!

“Light shines on the godly, and joy on those whose hearts are right.” Psalm 97:11

Sunday, February 19, 2017

Big Brains

 
A few days ago, Scientific American published an article online regarding research linking large brains to autism. [To read this article, please click here.] Written by Karen Weintraub, the article entitled, “Autism Starts Months before Symptoms Appear, Study Shows” summarizes a study published last week in Nature. Led by psychologist Heather Hazlett at the University of North Carolina’s Carolina Institute for Developmental Disabilities, this research started about ten years ago after earlier research indicated brains of children with autism were unusually large by age two.

For this research, three MRI brain scans were done on 150 children, 100 of whom had older siblings with autism, putting them statistically more at risk for autism. These scans were done on children at the ages of six months, one year, and two years old. The data revealed that eight out of ten children who showed faster growth on the surface areas of their brains would later be diagnosed with autism.

Consequently, before children are typically diagnosed with autism, evidence of autism appears in the brain. This research indicates that brain enlargement seems to appear with the beginning of autism symptoms that are usually first noticed around eighteen months to two years of age. Although more research is necessary, MRI brain scans could potentially be an option for autism screening in high-risk children, such as those with siblings with autism, so that intervention could be started earlier.

Psychologist James McPartland of Yale University’s Child Study Center (who was not part of this research) recommends new possible treatments for infants diagnosed with autism. Described as “hyper-parenting,” this intervention involves more interaction between the child and parent with the parent cooing, laughing, and singing. He suggests: “Supersaturate a child’s environment with social information as much as you can and hope that it takes.”

More than twenty years ago, Alex’s pediatrician noted what a big head Alex had. Even though he was very typical for his age in his height and weight, he had a head circumference in the 90th percentile. His doctor half jokingly commented that the large head circumference just meant that he had a bigger brain. I doubt that he knew how true his assessment was, based upon the results of this new study. Although I tried to convince the pediatrician for over a year that something was wrong with Alex, he essentially dismissed me as a nervous first-time mom and assured me that Alex was fine. When he specifically asked me what I thought was the problem, I candidly admitted I thought Alex had autism. He asserted that I was wrong because Alex was “too smart to be autistic.” However, shortly after Alex turned four, he was diagnosed with autism after I finally insisted that he be evaluated.

Would an earlier diagnosis have made a difference? I doubt it. In the early 1990’s autism was less common than it is today, and finding qualified therapists was nearly impossible. Now that autism is more common, therapists are easier to find. However, the increase in autism rates means that many children must be on long waiting lists before they can begin therapy to help them develop needed skills. Moreover, we unknowingly practiced the “hyper-parenting” therapy Dr. McPartland describes, constantly engaging Alex with conversation, music, interactive baby games (such as "Peek-a-boo" and “This Little Piggy”), and reading aloud to him long before we ever suspected he had autism.

Perhaps more research needs to pursue the cause of the increased size of brains in infants with autism. What happens between birth and two years of age that might cause these brains to be enlarged? According to his official vaccination records, Alex received twelve shots by the time he was fifteen months old. [The current CDC recommended immunization schedule now calls for infants to have 25 shots by the time they are fifteen months old, not including annual flu shots.] At the top of Alex's medical form is the notation, “Newborn screening normal.” Could something in the vaccines have triggered the abnormal brain growth seen in autism? I believe so.

Certainly, his pediatrician was correct about Alex being smart; he’s the kid who can mentally calculate math problems with remarkable speed and accuracy, who taught himself to read by the age of three, and who possesses an amazing memory for details, dates, and figures. However, that large brain also means his language, fine motor, and social skills have been impaired, and he has had to learn to cope with sensory overload and anxiety.

While identifying brain characteristics commonly found in autism may prove useful to earlier diagnosis, research still needs to focus on what is causing these brain anomalies. Until we can clearly identify the causes of autism can we ever hope to find a cure for our children whose brains have been impaired. In the meantime, we celebrate every milestone Alex reaches, thankful for the progress he has made and for the healing God has provided while we wait.

“But now, Lord, what do I look for? My hope is in You.” Psalm 39:7

Sunday, February 12, 2017

Gut Instincts

 
Recently, Massachusetts General Hospital published a news release sharing new research that autism parents have suspected for many years. The article entitled, “Study finds alterations in both blood-brain barrier and intestinal permeability in individuals with autism,” details the research of Dr. Alessio Fasano and Dr. Maria Rosario Florentino. [To read this article, please click here.] According to Dr. Florentino, “As far as we know, this is the first study to look at the molecular signature of the blood-brain barrier dysfunction in ASD [autism spectrum disorders] and schizophrenia in samples from human patients.” Their studies found alterations of genes in autism tissue samples, suggesting that intestinal issues lead to inflammation of the nervous system, which contributes to autism.

One of the factors behind this research study was the significant number of gastrointestinal issues found in people with autism. Dr. Fasano notes, “As well as information on the blood-brain barrier, we were looking for more information on how increased permeability, otherwise known as ‘leaky gut,” might affect the development of ASD in the context of a dysfunctional gut-brain axis.” The blood-brain barrier, a semi-permeable membrane is designed to protect the brain from harmful substances. The intestines also help protect the brain by not allowing toxins in the bloodstream. However, with leaky gut syndrome, the intestines do not work properly and can leak harmful substances into the bloodstream that could harm the nervous system.

Dr. Florentino plans to research next how microorganisms in the gut contribute to leaky gut and behavior, hoping to improve issues with behavior in autism as well as gastrointestinal problems. Considering how prevalent leaky gut syndrome, food sensitivities, yeast overgrowth, and digestive problems are in people with autism, this research will undoubtedly prove helpful.

While mainstream medicine will view the research by these two doctors as groundbreaking, this information supports what parents and truly innovative doctors treating autism have known for years. In his 1998 book, Biological Treatments for Autism and PDD, Dr. William Shaw clearly addresses the gastrointestinal problems people with autism face, implicates the underlying causes for these issues, and explains how to treat these conditions with dietary changes, digestive enzymes, probiotics, antifungals, and nutritional supplements. Indeed, many children with autism have made improvements following the guidelines of Dr. Shaw and his innovative contemporaries who recognize the connection between the gut and the brain. My own copy of Dr. Shaw’s book is dog-eared, highlighted, and marked with many marginal notes. For me, his truly “comprehensive and easy-to-read guide” has been crucial to helping Alex deal with the various gut issues that have affected his health and behavior.

With Alex, three pursuits were necessary to address his digestive issues. First, once we discovered through blood tests that he had a sensitivity to the proteins in milk and grains, we put him on a casein-free and gluten-free diet, which he has followed faithfully since he was seven years old. Glutens and caseins can inflame his digestive system, causing irritation. Paired with leaky gut syndrome, these substances can escape the digestive system and wreak havoc on the nervous system.
Secondly, we tested him for heavy metal toxins, and these tests revealed that he had high levels of arsenic, lead, mercury, and aluminum. Under the direction of a holistic osteopath, he underwent oral chelation therapy with the sulfur-based prescription, DMSA, which bonded with the heavy metals to remove them from his body. In addition, we tested him for nutritional deficiencies and discovered that he needed to take supplements of vitamins B, C, and D to support his immune system.

Finally, the greatest battle was killing the yeast beast, candida overgrowth that stubbornly clung to his mouth and the rest of his digestive tract, making him irritable and even aggressive. While this treatment took years and a variety of antifungals, such as the medications Diflucan, Nystatin, Ketaconazole, and Itraconazole, along with the supplements caprylic acid, oregano, garlic, and undecenoic acid, we knew that we had to overcome this gastrointestinal problem for Alex to get better. Paired with probiotics to boost the good bacteria, this rotation of antifungals, along with an improved immune system aided by nutritional supplements, has helped Alex tremendously. Thankfully, we have not seen any evidence of yeast overgrowth in nearly a year, and we are hopeful that his gut is finally healed.

Although the research by Drs. Fasano and Florentino may not be news to autism parents who have followed guidance of cutting-edge doctors like Dr. Shaw, the mainstream medical community’s recognition of the connection between the gut and the brain may indeed bring hope and healing to those dealing with autism. Not only are we getting closer to finding causes for issues in autism, but we also hope and pray that we are getting closer to a cure.

“Thank you for making me so wonderfully complex! Your workmanship is marvelous––how well I know it.” Psalm 139:14

Saturday, February 4, 2017

Anxiety Aid

 
Despite medication and years of behavioral therapy, anxiety arises at times. Even though Alex has learned to cope with panic attacks much better, he still has moments when the world suddenly overwhelms him. Yesterday, we had just arrived at one of his favorite restaurants, and he began to panic that he couldn’t remember something from several years ago. Sitting next to him in the booth, I could feel him vibrating in his seat as adrenaline made him shaky, his eyes widened, and he desperately tried to communicate his fears. As Ed and I tried to reassure him and help him remember calming skills, he was trying to get ahold of himself because he really wanted to stay. For the first time ever, I noticed that his neck and face were splotched with red spots, which must have been a physical reaction because they disappeared a few minutes later when we convinced him that going home would be the best option under the circumstances.

Once we arrived home, he was calmer, but he was still a bit worried about his schedule, especially since plans had changed suddenly when we left the restaurant where we had planned to eat. Time schedules have proven very helpful to Alex over the years, allowing him to avoid being taken by surprise because he knows what is coming next. After I wrote a schedule outlining the rest of the evening, he settled down. A little later, he happily informed us that he was able to remember something he thought he had forgotten. Safe at home with a schedule, he was able to overcome the anxiety that panicked him and interfered with his usually unusually acute memory.

Over the years, we have made lists and schedules for Alex in a variety of ways: memo pads, legal pads, composition notebooks, and notes on his iPad. Problems have arisen at times, however, when he misplaced his precious lists intended to calm him and melted down because he couldn’t find the list he needed. To make his lists easier to find, I often use colored index cards. Last weekend, as Alex was carrying around a green index card with the schedule for the day, Ed reminded him to hold onto it tightly as we walked to a basketball game on a windy day. As the old saying goes, “Necessity is the mother of invention.” This time the father was the resourceful one, as Ed came up with a great idea.

Thinking of the wristbands baseball catchers and football quarterbacks wear to hold information regarding plays, Ed suggested that Alex could use one to hold his lists. Not only would we not have to worry about Alex losing his lists or having them blow away in the wind, but he would also be comforted to know that his beloved list was literally close at hand. The only problem was that I had no idea what those wristbands are called. A Google search informed me that they are known as wrist coaches. A little more online searching led me to discover that our local Dick’s Sporting Goods store had a variety of styles in stock.

A trip to the sports store was successful as I found one for $9.99: a Cutters mini wrist coach made of soft terry cloth material with the plastic holder on top that keeps the lists secure and dry. We also knew that we could convince Alex that the wrist coach was a great idea because he has seen catchers wear them on television. Yesterday, when he was dealing with his panic attack, I made him a schedule, slipped it into his wrist coach, and put the wrist coach on his arm. Needless to say, it worked like a charm. He kept turning his wrist to see the schedule, reassured that he knew where it was and what the rest of his day would entail. I just wish Ed had thought of this great idea sooner because it would have saved us countless times of frantic searches over the years for a list Alex misplaced.

While we wish Alex didn’t have to struggle with anxiety, we are pleased that he can cope better now, thanks to proper anti-anxiety medication and skills he has learned in therapy. However, we also know that he relies upon us whenever he finds himself overwhelmed, and we are thankful that we, too, have learned tricks and tips to help ease his fears.

“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, January 29, 2017

Thinking Caps and Name Tags

 
Every year, I ponder and search for what I think is the perfect Christmas gift for Alex. This year was no exception. Shortly before Christmas, a friend of mine told me that the website for Jeopardy, one of Alex’s favorite game shows, was now selling merchandise with the Jeopardy logo. First, I found a t-shirt emblazoned with “I’ll take fast cars for $200,” which seemed appropriate because it combines Alex’s love of Jeopardy and NASCAR. After ordering that, I found a baseball cap embroidered with the Jeopardy logo that I knew he would love; baseball cap plus Jeopardy plus his favorite color, red, had to be the perfect gift. However, when he opened it on Christmas morning, he wasn’t as enthralled as I thought he would be. Nonetheless, he seemed pleased with his Christmas gifts and was gracious enough to thank us for them.

Knowing that Alex sometimes gets overwhelmed by too many new things, such as all the gifts at Christmas, I didn’t give too much thought to his reaction or lack thereof to the Jeopardy hat. If I thought he didn’t like it, I was wrong. The next week, he came strolling into the family room precisely––as he does every weekday afternoon––at 3:28, ready for Jeopardy to start at 3:30, proudly wearing his Jeopardy hat. In fact, he wore it for the entire show and took it off immediately when the show was over. The next day, he repeated the routine, wearing his Jeopardy hat only for the show. Apparently, he thinks that he can only wear it when the show is airing, and he has continued this ritual since then. I tell him that it’s his thinking cap, and he does seem to be quicker about answering questions when he wears the Jeopardy cap. Maybe like Frosty the Snowman’s top hat, there’s some magic in there.

Another Christmas gift we gave Alex was a Burger King gift card. He likes the idea of being able to pay for his own food, and he manages better with a gift card than trying to handle cash. Nearly every Friday afternoon, his behavioral therapist and I take him to our nearby Burger King for recreational therapy so that he learns how to interact appropriately with other people: waiting in line, ordering his food, using please and thank you, and clearing his tray when he leaves. Apparently, he has endeared himself to some of the staff there who are on a first-name basis with him; he returns their kindness by naming them in his nightly prayers. Two of his favorites even gave him a Chicago Cubs World Series ornament personalized with his name for Christmas, which delighted him, and I think his obvious joy delighted them, too.

Recently, Ed had a reception at work and would not be coming home for dinner, so Alex and I decided to go out for dinner. Knowing that Alex feels comfortable at Burger King, I thought that would be a good choice. As we waited to order our food, I noticed that the young man taking orders was heavily tattooed and had assorted piercings. Wondering whether Alex would notice the worker’s appearance and hoping that he would not feel the need to make any comments, I was ready to intervene. If necessary, I would subtly and quietly remind Alex not to stare or say rude things. When we walked up to give our order, I tried not to stare myself and hoped Alex would use the social skills his behavioral therapist and Ed and I have taught him.

While getting ready to give our order, I saw that Alex was looking at the young man and smiling a bemused smile. When the worker greeted us, Alex started to speak, and I was a little worried because I had no idea what he would say. Suddenly, “Hi, Joey!” came from his mouth. Startled but relieved, I realized that Alex had not been looking at the young man’s tattoos or piercings, but instead was checking out his name tag so that he could say hello. Unlike me, Alex was able to overlook this young man’s appearance and seek a way to interact with him positively, greeting him by name, just as the friendly Burger King employees have done with him. He knows that it makes him feel good for people to call him by name, and he returned the favor. Interestingly enough, Alex has also added Joey to his nightly bedtime prayer list. How proud I am to have raised a son with a heart so pure that he looks beyond appearances and sees the real person behind them! Now, that is a perfect gift that he gives to me.

“Give, and you will receive. Your gift will return to you in full––pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back.” Luke 6:38

Sunday, January 22, 2017

No News Is Good News

 
After writing this blog for six and a half years, I took four weeks off from writing. With Christmas and New Year’s Day falling on Sundays, I figured a holiday vacation from blogging would be understandable. Then I gave myself two more weeks of break and considered that perhaps the blog was finished for good. My last entry about Alex’s birthday and how well he was doing would have been a nice “And they lived happily ever after” ending to a project I started long ago. However, with encouragement from my mom and my husband (both of whom I suspect secretly enjoy searching for typos to correct for me), I realized that I needed to refocus on the reasons I write about Alex.

My intention regarding writing about our family is to show others how autism impacts our family life on a daily basis––good and bad. For families like us who are raising children (and for us now, an adult child) with autism, I wanted to give them hope. Through all the ups and downs, we have come through this with our faith and love stronger and a young man who makes us proud every day. Moreover, I originally began writing the blog for Alex. In my first entry, I explained that I knew how important writing Alex’s history was if for no one else but him so that he could see how far he has come. With a renewed sense of purpose, I pick up my laptop again after a month to record Alex’s life experiences. As a confirmation that I should continue, on Friday I was surprised, pleased, and honored to have Feedspot.com name One Autism Mom’s Notes as one of the “Top 50 Autism Blogs and Websites for Autistics and Autism Parents.” If I had any lingering doubts about whether to proceed, God put them to rest with that.

Without a doubt, 2016 was a wonderful year for us. Alex made great progress in his social skills that allowed us to enjoy family outings to concerts, sporting events, parks, and restaurants. We even savored simple everyday events, such as going grocery shopping or watching television together. His therapists have been delighted with how well he has learned language and coping skills to deal with anxiety, being able to verbalize when he’s worried. Even better, he can decide to conquer his fears and declare that he’s “not going to get upset” or that he’s “done being mad.” This is a huge step because he recognizes that he can take control of his emotions. In addition, we are thankful that his doctor gave him a clean bill of health along with the title of  “easiest patient of the day” in December. After struggling with yeast overgrowth in his digestive system that made him irritable and agitated for years, Alex seems to have that behind him. Although I knew that God would eventually heal him of the yeast overgrowth, realizing that we hadn’t dealt with thrush for several months was a pleasant surprise and blessing.

Most of all, we discovered that the professionals who truly knew about autism were correct in telling us that young men with autism struggle until they reach their mid-twenties, and then they improve significantly. We had been holding onto that promise with hope, and the closer that Alex got to age twenty-five, the more we realized it to be true. With his health greatly improved and his anxiety under good control, Alex can reach his full potential without being burdened by illness and fear. I have no doubt that God has great plans for my son, and I eagerly anticipate what the future holds.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it?” Isaiah 43:19

Sunday, December 18, 2016

Good and Perfect Gifts

 
This week I read an interesting essay written by another mother of an adult son with autism. [To read this essay, please click here.] Entitled “Prayer Power,” Kathy Bolduc’s blog entry describes the importance of constantly praying for our children, even when our prayers appear to go unanswered. She writes, “I don’t know about you, but I pray and pray for my son, Joel, who has autism. Many times I do not see specific answers to those prayers.” She goes on to describe the struggles of trying to find ways to make her son more independent through day programs and jobs, praying that he can live a “happy and fulfilled life.” While she admits, “I realize that my prayers will not always be answered in the way that I think they should be. God knows the bigger picture,” she believes Satan is often to blame. She states, “And I also realize that Satan has more than a toe-hold in this world…He will try to block my prayers whenever possible.” While I completely agree about the need to pray for our children constantly, I don’t give Satan the credit she does. Moreover, the longer I live, the more I don’t believe that prayers go unanswered.

Five years ago when Alex was so consumed with anxiety that he could not cope with the smallest of changes, we prayed for ways to help make him better. When every day was a struggle to keep him safe because his adrenaline rushes made him aggressive and out of control, throwing and breaking objects, as well as attacking us verbally and physically, we prayed for peace in our home. When we could not find any professionals who seemed to know what was causing our sweet and docile son to turn into an angry young man, we prayed for God to show us the way. We didn’t get answers right away, but we held onto our faith and kept praying anyway because we didn’t know what else to do.

Things had to get so bad and so out of control that we were willing to turn over our son to the only place where he could receive the care he desperately needed: a locked psychiatric ward of a hospital forty minutes away from home. After we had exhausted all of the local resources and had not found answers, we were exhausted physically and emotionally, and we knew this was the only way to save our son. God led us down this path, and even though it was heartbreaking, this hospitalization was the first step in Alex’s healing. There, we found professionals who understood that hormonal surges of the late teens and early twenties had ramped up Alex’s anxiety to where he could not function. Moreover, the Prozac he had been taking for nearly ten years to help his OCD was no longer effective, making his anxiety even worse. After several weeks of trying various medications, they were able to come up with a combination that kept his anxiety under control so that his behavior was under control. Moreover, they helped us navigate the state bureaucracy to get Alex the support services he needed in record time. God knew what we needed and how to get there; He answered our prayers in unexpected ways.

Through the teachings of Pastor Joel Osteen and my experiences in life, I have learned that God answers prayers in a variety of ways. While we would like for Him to say “Yes” immediately, that is not always in our best interests. Sometimes He says “No,” knowing that His ways are better than ours, closing doors that we keep trying to open. In our life with autism, I have learned that God often makes me wait before answering prayers, developing my patience and my faith and my trust in Him. Sometimes, waiting is necessary to prepare us for the next step; God knows better than I do about when I’m really ready to handle something new. Furthermore, I don’t give Satan credence, as Kathy Bolduc does, in my prayer conversations with God. I firmly believe that God hears my prayers and makes the decisions as to how to answer them—yes/no/not yet––without any interference from anyone. Even through the darkest days, God was beside us, guiding us with His knowledge, grace, and love toward the light we now see clearly.

On Friday, Alex turned twenty-five. In the past, I have felt a little wistful on his birthdays, wishing that he were further along in his development of language and social skills and concerned about his lack of independence. This year, I felt none of that disappointment. In fact, I told his therapist the other day that twenty-four had been my favorite age of his because he has been such a joy this past year. Since he has overcome so many issues, learned to manage his anxiety successfully and been able to enjoy a variety of activities, he has lived a more typical life. Most importantly, he is happy and healthy. Before going through the fire with Alex, I might have bowed to superstition and crossed my fingers and knocked on wood that this peaceful, contented life would continue. However, I have faith that God is only going to make things better. Certainly, we still have obstacles and potential setbacks ahead, but I know that God has great plans for Alex, even though I don’t know exactly what they are.

As I was putting Alex to bed the night of his birthday, after a day of presents he liked, a delicious meal at a nice restaurant, a visit with his beloved grandparents, good wishes from family and friends, and his favorite gluten-free and dairy free birthday cake, I asked him what he liked best about his birthday. I honestly thought he’d tell me the shrimp he’d had for dinner, since he’d rated his meal at “one hundred percent.” However, after a quick reflection on the day, he smiled and said, “Everything!” I thought nothing was better than that until last night when Ed asked him the same question, and he responded again with the same answer. Trying to give me credit for arranging the details of a seemingly perfect birthday, Ed asked Alex who had made his birthday so special. Without a moment’s hesitation, Alex replied, “God!” Only too happy to give proper credit and glory to God, I’m not only thankful for the wisdom and faith He has given my precious son but also for always answering our prayers in ways that only He knows best, those “good and perfect gifts…from above.”

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17

Sunday, December 11, 2016

To Be a Friend



“…and everyone would have a friend and right would always win and love would never end: this is my grown-up Christmas list.”––Linda Thompson, “My Grown-up Christmas List”

“What does Alex want for Christmas this year?’ asked one of my colleague friends this week. As I explained that he has not given me any ideas but seems to trust my gift selection judgment, I was pleased that she had asked about him. However, I was not surprised by her interest because she has known him all of his life and has always shown genuine affection toward him. When he was little, she would let him sit in her lap and type on her computer. In addition, she would have him check the large calendar on the wall made up of number tags placed on hooks to make sure the days and dates were accurate, knowing his love for calendars and his eye for detail. Her daughter has the same birthday as Alex, so she and I always remember to pass along birthday wishes. Over the years, she and I have shared concerns and celebrated milestones, and I have appreciated that she never fails to ask about Alex and how he is doing.

Later in the week another colleague friend and I compared notes about how our adult sons are doing. She remarked of her son, “This isn’t the life I would have chosen for him, but he’s happy, and that’s what’s important.” I understood completely because I could say the same thing about Alex. She, too, has known Alex all of his life and has taken a keen interest in him, always asking how he is doing and celebrating his progress with me. Moreover, she is one of the most faithful readers of my blog who often writes kind and thoughtful comments in response to my posts. Not only does she cheer for Alex, but she also cheers for me. That friendship is precious to me.

Recently, another colleague friend who also faithfully reads my blog told me, “When I grow up, I want to be Alex.” She went on to explain how pleased she is now that he is able to do fun activities, such as going to concerts and basketball games, because he has improved so much. As we often talk about our adult children who are nearly the same age, we find a great deal of common ground, despite the impact autism has on Alex’s life. In addition, she has passed along her compassion to her children, who also take an interest in Alex. In fact, her sweet son sent back gifts (a commemorative lanyard, a Dale Earnhardt, Jr. model car, and an autograph from the winner of the race) from last year’s NASCAR’s Brickyard 500, knowing that Alex is a huge NASCAR fan. Her enthusiasm for Alex’s accomplishments makes me thankful to have her as a friend.

Along with these three special women, I have been blessed with other people in my life who have been loyal and true friends, consistently taking interest in Alex. One of my male colleague friends who has now retired used to ask about Alex’s current interests with, “What’s Alex into these days?” Another now retired male colleague endeared himself to me by his sincere and consistent interest in Alex, always asking me to say hello to Alex for him. Because autism impairs Alex’s social skills and hinders making friends on his own, I am grateful for my friends who treat Alex as their friend, too.

On the other hand, I have some people whom I consider friends who rarely if ever ask about Alex, even when we have long conversations about their children. I would think that the natural inclination after telling about their kids would be to ask, “How’s Alex?” To be honest, this oversight hurts my feelings, even if it is unintentional. Maybe they think that talking about an adult with autism is uncomfortable, like talking about someone who has passed away. I suppose they could be so busy with their own lives that they don’t have time for mine. Perhaps now that he’s an adult, people just don’t know what to say or ask. However, simply asking, “How’s Alex?” would be more than enough for me.

On Fridays, Alex’s behavioral therapist and I take him out in the community so that he can practice the social skills and language skills he has been learning. One of our favorite places to go is the nearby Burger King, where the employees are especially friendly and kind to us. Two of the ladies have taken a special interest in him, and now he is on a first-name basis with them. Alex is to Burger King what the character Norm was to the television show Cheers. When he walks in the door, they call out his name, which delights not only him, but also his therapist and me, too. He rewards their kindness with a big smile, says hello to them by name, and then tries to control his excitement at seeing them by leaning forward and putting his hands between his knees as he shudders with joy. I have to think that his obvious enthusiasm in seeing them makes their day.

Last Friday, the two Burger King ladies whom Alex considers his friends gave him a beautiful Cubs World Series commemorative ornament they had especially made for him and personalized with his name on it, knowing that he is a huge Cubs fan. While Alex isn’t always able to express his feelings easily, I think they could see how tickled he was by their thoughtful gift. Of course, as his mother, I was quite touched by their kindness. That ornament now holds a place of honor on our Christmas tree and will always remind us in future years of two women who saw the good in Alex and reached out to him in friendship. Their kindness will be remembered, especially by Alex, who every night in his prayers requests: “God bless Tammy and Cassie.” Indeed, God bless those who bless our lives with kindness.

“A friend loves at all times…” Proverbs 17:17

Sunday, December 4, 2016

Surprising Gifts

 
Yesterday, an autism mom friend shared an interesting article on Facebook that caught my attention. Entitled “Top 10 Traits of Individuals with Autism Which Get Overlooked,” this blog essay explains unique gifts people with autism sometimes possess. [To read this article, please click here.] A common saying regarding individual differences among people with autism goes, “You’ve met one person with autism, you’ve met one person with autism”; however, certain traits appear to be common in many people with autism. This particular article highlights some rare talents that many people with autism seem to share. As I read through the list, five of them immediately resonated with me because they describe some of Alex’s unique gifts perfectly.

“People with autism have exceptional long-term memory.” This trait highlights the ability to remember details from many years ago and the aptitude for rote learning and recollection of facts. If Alex hears or sees a particular year, he will often tell us something he remembers specifically from that time, even if it seems rather insignificant, such as having a cold on that date. He often reminds us of the date of the Super Bowl Sunday when he was little and threw up seven times. (I, on the other hand, chose to block out the memory of that day!) As I play Jeopardy with Alex every weekday, I’m amazed by the specific facts he can recall, especially about history, geography, and science. When I ask him how he knows this information, he can tell me his source of facts, such as a particular book, website, or television show. Apparently, he can visualize these details in his mind and rapidly retrieve them from his memory, which amazes me. Also, he always remembers everyone in the family’s birth date, which helps me send birthday cards on time every year.

“People with autism excel at auditory and visual tasks.” Besides his ability to visualize details from his memory, Alex also has exceptional auditory memory. He would be a whiz at the old game show Name That Tune because he can recognize familiar songs after only hearing a few of the opening notes. In addition, he can tell us the name of the group or singer of the song. Because of his eclectic taste in music, he seems to have a large music library stored in his head. We are also discovering that he knows many song lyrics as he has recently begun singing aloud.

“People with autism demonstrate impressive math skills.” I would go a step beyond and say that Alex has savant math skills. His ability to calculate math problems mentally with accuracy and speed is nothing short of astonishing. Unlike the character of Raymond Babbitt in Rain Man, however, Alex can use his math skills in practical ways and has an awareness of how much things cost, probably because he watches The Price Is Right every day and follows the stock market faithfully. In addition, he pays attention to gas prices, noting their rise or fall. When we are driving in the car, he will tell us whether the gas prices have gone up or down since previous day, and he informs us of the difference in prices between gas stations as we drive along. For example, he will say, “Gas is two cents cheaper at Luke Oil than at Family Express.” This requires him to notice the prices on the gas signs, remember the exact amounts, compare/contrast the prices, calculate the difference, and communicate to us his observations. He saves us from having to check the Gas Buddy website, and we find his enthusiasm about sharing his data endearing. Again, his keen memory serves him well because he can not only see numbers in his mind to solve problems, but he can also easily recall over one thousand digits of pi, picturing the sequence of numbers as clearly as if he were reading them off the page.

“People with autism have an eye for detail.” Alex is amazingly perceptive, especially when it comes to his beloved numbers. For example, whenever our car thermometer registers the outdoor temperature as 63 degrees, he’ll excitedly tell us, “Sixty-three! That’s like Mommy’s, Aunt Tammy’s, Aunt Kim’s, Aunt Babs’, and Aunt Pat’s height in inches!” (Yes, he has several female relatives who are all the same height.) He also notes when the car clock registers the same number in minutes as the temperature, such as when it’s 5:43 and 43 degrees. He’ll enthusiastically share this information and exclaim, “That’s rare!” (However, it’s not as rare as one might think because this phenomenon seems to happen at least once a week.)

Alex also has an eye for errors, which makes him an excellent proofreader. At basketball games, he often tells us when the scoreboard is wrong, yet he patiently waits for the mistakes to be corrected. He brings us books that have typos and asks us to fix the misspelled words or missing punctuation, showing that he inherited his English teacher parents’ bent for precision in writing. Last week, he brought me one of his NASCAR books and indignantly told me that it was incorrect about what year Michael Waltrip won the Daytona 500. Alex was right; the book was wrong. Last night as we were watching Music Choice on television that features songs from particular decades along with quick facts flashed on the screen about the artists, he suddenly said, “There’s an apostrophe missing.” Not seeing the error at first glance, I asked him to show me where. He pointed to the screen and explained, “Didn’t needs an apostrophe.” By golly, he was right; they had forgotten to put the apostrophe in that word. Not only am I impressed with his precision and ability to notice small details, but I’m also pretty proud as the one who taught him grammar that he knows the rules so well.

“People with autism are non-judgmental.” Alex doesn’t seem to notice people’s appearance; therefore, he does not judge people based on the color of their skin or their size, although he is impressed by very tall people. Perhaps because his eye contact is not very good, he pays more attention to people’s voices. More important to Alex than how people look is how they act, and he seems to be intuitive about people, recognizing and appreciating those who are kind to him. He seems to see past the exterior and focus on the interior––the good hearts he can easily recognize.

Despite the difficulties autism has imposed on Alex’s life, he has been blessed with special gifts that allow him to see the world in unique ways. As his speech has improved over time so that he can convey his thoughts, we have been able to glimpse how his mind works and how he perceives the extraordinary in ordinary occurrences. Moreover, we have been able to share his enthusiasm for everyday life and the joy he finds in unexpected places.

“It is the one and only Spirit who distributes all these gifts. He alone decides which gift each person should have.” I Corinthians 12:11

Sunday, November 27, 2016

'Tis the Season


Alex loves the holiday season and eagerly anticipates this time of year every year. This week, we enjoyed a pleasant Thanksgiving dinner with my parents that he helped me cook. Yesterday morning, we were able to get together for breakfast at one of Alex’s favorite restaurants with my siblings and their families and my parents. Although being in a crowded restaurant in a group of fourteen people could have been daunting for Alex, he handled the situation quite well and enjoyed being with his grandparents, parents, aunts, uncles, and cousins.

After about an hour, however, I noticed the subtle appearance of the dreaded “claw.” When Alex is overwhelmed or not happy about something, he bends his wrist down into an acute angle and bobs it up and down to let us know he’s not pleased. I was pleased that he waved the claw under the table so that only I could see it. Using the techniques that I have learned from his behavioral therapist, I told him that I knew he was upset and asked if I could do anything to help him. He waved his claw again to make sure I had seen it and then quietly told me, “It’s too hard to remember the haircut calendar.”

The haircut calendar is Alex’s go-to excuse that simply means he’s overwhelmed. He used to tell us when he was upset that he “never wanted to use the typewriter again!” No one was making him use a typewriter; this was just something he blurted in frustration. However, we know better than to minimize his anxiety, so I calmly told him that he had just had a haircut two weeks ago, which seemed to calm him a bit. I also gave him the option of going home––not as a punishment but as a way to escape a situation that may be upsetting him. He insisted that he wanted to stay, and he was able to use calming skills so that he was able to snap out of whatever was bothering him and enjoy the rest of the time. While I wish Alex didn’t have to suffer from anxiety, I’m happy that he has learned to deal with being upset without causing a scene and that he can calm himself instead of escalating into a meltdown. This is a huge blessing.

Yesterday evening, I had to employ some calm down skills of my own. Alex needed to have blood drawn for his regular six-month lab tests to make sure he is healthy and to check that his medication levels are appropriate. Thankfully, he never minds having blood tests, and lab technicians always remark on what a good patient he truly is. My anxiety was with the check-in clerk who was rather insistent that he needed to fast for ten to twelve hours prior to these tests. However, Alex does better in the evening when he is calmest; therefore, we always do the testing in the evening. Although I explained this to the clerk, she made some remark about the tests being inaccurate and told me that she would tell the lab technician that he hadn’t fasted.

Even though I knew I was doing what was best for Alex, I somehow felt as though I was being chastised and wondered if I would get more flack from the lab technician. However, we soon discovered that the warm and friendly lab technician was an autism mom herself who completely understood why we did not have Alex fast prior to the test. She explained that she never made her son fast before tests, either. I prayed for a sympathetic lab technician and was given an empathetic one who told us to ask specifically for her by name whenever Alex needed a blood draw. Not only did she enthusiastically praise him, but she also gave him apple juice as a reward for his bravery. As we chatted with her afterward, we were thankful to have someone who completely understood our situation. That was a huge blessing.

Earlier in the week, Alex had been talking with his behavioral therapist who was asking him about his favorite times of the year. He explained that his favorite month was December because Christmas and his birthday are in December. He went on to tell her that Christmas is his favorite holiday. When she inquired why, he immediately responded, “Because it’s Jesus’ birthday!” Of course, I was delighted by his answer, as was she.

As I put up Christmas decorations over the past few days, I’ve been trying to remember to savor the effort instead of resenting the extra work. I have decided that I’m going to do things that bring joy. My mom had asked Alex what his favorite decorations were, and he told her, “The cousins’ stockings.” Ironically, I had not yet put up the dozen small stockings with his cousins’ names on them, so he was remembering them from last year. In fact, I was debating about putting them up at all because it was one more task to do. However, once I discovered that they were his favorites, I immediately hung the stockings on our stair railing because they bring Alex joy, which brings me joy.

After I finished hanging our huge assortment of ornaments on our Christmas tree yesterday, Alex carefully surveyed my work, smiling as he studied the ornaments. When I asked him what he thought and what grade he’d give me, without hesitation, he enthusiastically told me, “A+!” Certainly, that high praise made the effort worthwhile, but his joy was an even greater reward. Most of all, I’m thankful for my son who reminds me that the true importance of Christmas is finding joy and celebrating the birth of God’s son. What greater blessing could there be?

“You will conceive and give birth to a son, and you will name him Jesus. He will be very great and called the Son of the Most High. The Lord God will give him the throne of his ancestor David.” Luke 1:31-32

Sunday, November 20, 2016

Thankful

 
As we celebrate Thanksgiving this week, we recognize all the blessings for which we are truly thankful. Although we have been through times when being grateful wasn’t always easy, we made sure to find something to appreciate about each day. Now that Alex is doing quite well, we make certain not to take these good days for granted and praise God for all He has done for us.

For good health, we are thankful. Not only have Ed and I been blessed with remarkably good health so that we can take care of Alex, but Alex is getting healthier all the time. The inflammation that has plagued him, as evidenced by acne, yeast overgrowth, and irritability, appears to be under control. His complexion is clear without needing acne medication, his appetite is good, he sleeps peacefully, and his mood is nearly always pleasant and upbeat. Praise God for these blessings!

For financial stability, we are grateful. Even though autism has brought about unexpected expenses, such as multiple therapies, nutritional supplements, and a gluten-free and dairy-free diet, all of which are needed to address various issues, we have always had plenty of money to pay for them. Even though we are both teachers, and I only work part-time so that I have more time to devote to Alex, our salaries have been more than enough to meet our needs. Now that Alex is an adult, he receives disability funding that allows him to receive additional therapies and support. Praise God for these blessings!

For Alex’s support team—his psychiatric nurse practitioner who manages his anxiety medications, his case manager who oversees his budgets and coordinates his services, his behavioral therapist who teaches him coping and social skills, his music therapist who helps his language skills and anxiety, and his respite care companion who engages him in conversation and allows him to enjoy a peer friendship––we are appreciative. Not only are all of them exceptional at their jobs, but they are also wonderful people who see the best in Alex and strive to make him better through encouragement. Along with us, they celebrate his accomplishments. Praise God for these blessings!

For the progress Alex has made that allows us to enjoy a “normal” family life, we are thankful. Now that we can go to sporting events, concerts, restaurants, stores, and parks, enjoying our time together as a family, we remember when Alex wasn’t able to do any of those activities and feel fortunate that he has learned to cope with his anxiety. For many years, we couldn’t go anywhere together, and now we engage in recreational activities almost daily. Praise God for these blessings!

For family and friends who have supported us and prayed for us, we are filled with gratitude. When we struggled through difficult times and felt overwhelmed, we knew that we had loved ones who cared deeply about us and our situation. We also appreciate those who understand that sometimes the seemingly small steps are in actuality great milestones for Alex. I am especially thankful for my parents who have been Alex’s greatest cheerleaders. For their unwavering faith in him and unconditional love for the three of us, they have more than earned the honor of having Alex name them first when he’s asked who his friends are. Praise God for these blessings!

For the grace of God who saw us through difficult times and for the healing of God who has made Alex better, we are overwhelmed with thankful praise. When we couldn’t see how things were going to work out, we knew that God had plans for our lives and trusted Him to arrange the details, which He did. When we didn’t know what to do, God guided us to the right choices and the right people who could help us. When we didn’t know how to reach Alex because he was filled with anxiety, God never let him go and kept him safe until the storm passed. During that time, Alex developed an unwavering faith and trust in God that carries him through life. Praise God for these blessings!

Not just on Thanksgiving, but every day, we realize just how blessed we are, especially when we see how far Alex has come and recognize all that we were given so that he could make great progress. Praise God for these blessings!

“I will give thanks to You, Lord, with all my heart; I will tell of all of Your wonderful deeds. I will be glad and rejoice in You; I will sing the praises of Your name, O Most High.” Psalm 9:1-2