Sunday, April 23, 2017

The Fidget Fad

 
Trying to teach middle school students the last weeks of school is always a challenge, even for veteran teachers like me. However, this spring a popular gadget is interfering with the learning process, despite its inflated claims of being a panacea for students with special needs. Advertised as the “must have toy for 2017,” fidget spinners are appearing in classrooms, much to the dismay of many teachers. While these handheld plastic flat triads with three bearings that can be spun supposedly help students with ADD, ADHD, OCD, autism, and anxiety, they are creating anxiety for many of the teachers whose students are bringing them to class.

Despite no studies showing their effectiveness, these fidget toys claim to relieve and reduce stress and anxiety, increase focus, build concentration, and help with boredom and restless hands. Some companies even market the fidget spinners as “educational toys.” The fidget spinners are also described as “addictive,” the one adjective I will agree is true. The low cost of these spinners––anywhere from $1-20, with most priced around $5––makes them affordable for nearly all students. The fidget spinner takes the place of the typical spring appearance of rubber bands to shoot, paper airplanes to throw, or the ever-popular erasers to toss. However, students claim they need these spinners to focus and be calm. Either they bought the hype or think that their teachers are that gullible.

To summarize, a fidget spinner is an attractive nuisance. If one kid has a spinner, everyone in the class wants to see it, touch it, spin it; they are mesmerized by these gadgets. They want to pass them around so that everyone can enjoy all the benefits of these miraculous inventions. Certainly, this does help them with boredom, as the ads claim, yet their focus and concentration are upon a stupid piece of plastic with metal bearings and not on what they are supposed to be learning in class.

Moreover, the sound of the spinning bearings poses a distraction. One ad claims that the low humming sound actually “helps promote a sense of calm.” As the teacher, that humming sound makes me want to take that spinner and throw it out the window, so it clearly fails to calm me. I suppose these fidget toys have become necessary because students cannot bring their phones or video games to class, and they simply do not know what to do with their hands when they aren’t holding an electronic device to entertain themselves.
Yet another disruptive fidget toy appearing in classes this year with similar claims of positive effects is the fidget block. Ranging in cost from $5-10, these cubes have various buttons and knobs on each of the six sides to provide sensory stimulation. While some of these fidget blocks claim to be silent, others make the same annoying sound made by the clicking of a retractable ink pen. Of course, one of the problems with the fidget spinners or blocks is the potential for dropping the item, which proves distracting for the entire class. However, these fidgets are slightly better than stress balls that roll down the aisles.

As an autism mom, I understand that some children do need sensory toys to help them focus and/or remain calm. However, as a teacher, I see many students jumping on the sensory issues bandwagon who don’t really need a fidget toy but just want to have something to play with in class. Because teachers must protect the privacy of our special needs students who are mainstreamed, regulating the presence of sensory toys becomes problematic. Consequently, I’ve had to accept the fidget toys so long as they remain in the owner’s hands and are used properly. However, when they start sharing their spinners with their friends and or taking them apart, they become mine until class is over.

If, indeed, students truly need to have sensory toys, I would recommend the following alternatives: pool splash balls, squeeze blocks that look like Legos, and desk buddy rulers. The advantage that all three of these items have is that they do not roll, would not inflict injury if tossed across the room, are silent, cannot be taken apart into pieces, are inexpensive, and have actual sensory value to students with sensory needs. The splash balls intended for playing in swimming pools are made of soft material lightly stuffed with polyester filling. They are lightweight, smooth to the touch, squeezable, and unlike stress balls, cannot roll easily. Squeeze blocks offer the same benefits. Desk Buddy rulers offer the various tactile stimulation of a fidget cube without the noise or likelihood of falling off the desk and rolling on the floor. If parents are considering buying sensory stimulation toys for their children with autism or ADD/ADHD, I would recommend any of these three items instead of the fidget spinners and cubes.




While students who actually have stress, anxiety, and focusing issues should have their needs met, those claiming to have these problems should not be playing with toys that distract them, their classmates, and their teachers. Good alternatives exist for students who truly need sensory stimulation, and parents and teachers should seek these items instead. Fortunately, teen fads rarely last long, and spinners will likely spin out of favor just as quickly as they arrived in classrooms this spring. After dealing with students doing the "dab" dance arm movements in the fall, we teachers know that annoying fads will eventually go away and be replaced by something equally annoying. In the meantime, we secretly hope that those parents who bought their children fidget spinners and cubes will be treated to a summer of humming and clicking and dropping them so that they can understand why we found these toys so annoying in our classrooms this spring.

“Rejoice in our confident hope. Be patient in trouble, and keep on praying.” Romans 12:12

Sunday, April 16, 2017

Grace over Guilt

 
Most mothers, especially those who have special needs children, would admit one of the strongest and most difficult feelings to handle is guilt. Often we feel guilty for what we may have done that might have caused our children to have issues. At other times, we feel guilty for our perceived sins of omission, failing to do something that might have made a difference in our children’s lives. The saying goes, “Hindsight is 20/20,” and looking back on our lives, we recognize the things we may have done differently had we known what we know now. On the other hand, if we truly believe that God is guiding our lives, we realize that every event in life is necessary to get us where we need to be. That consideration relieves some of the pressure we moms face, knowing that everything in life, indeed, has a purpose.

To be honest, in my OCD fashion, I have scrutinized every possible thing that could have led to Alex having autism. If I had done things differently, might he have escaped this condition that makes his life more difficult than it needs to be? I remember a colleague of my obstetrician asking me point blank why I was still working midway through a pregnancy considered high risk. When I explained that my doctor had assured me that I could safely work up until the day I gave birth, as long as I felt well enough, he scoffed at me. Then he turned to Ed, wagged his finger, and said, “If she were my wife, she wouldn’t be working.” Perhaps if I hadn’t dismissed his opinion as old-fashioned, might Alex have not developed autism?

“Neither this [blind] man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9:3

In my last trimester, I caught the flu and had to be hospitalized because the virus made my blood platelet count drop to dangerously low levels. To treat this condition, the internist gave me gamma immune IVs, which I later discovered contained mercury as a preservative. Had I stayed home to avoid exposure to germs and not gotten sick, might Alex not have been exposed to the virus and mercury, which we later discovered had poisoned him?

“So let us come boldly to the throne of our gracious God. There we will receive His mercy, and we will find grace to help us when we need it most.” Hebrews 4:16

As a conformist who follows rules and guidelines, I implicitly trusted Alex’s pediatricians and faithfully took him to receive all of his vaccinations on time, even though he had been exposed to prednisone in utero that I was given to treat an autoimmune condition. When they assured me that he would be fine, I believed them, and gave him Tylenol as they recommended, never questioning the process. Had I done more research about vaccines and their toxic ingredients and known about how Tylenol hinders the body’s natural detoxification pathways, might I have spared him neurological damage?

“Each time He said, ‘My grace is all you need. My power works best in weakness.’ So now I am glad to boast about my weakness, so that the power of Christ can work through me.” II Corinthians 12:9

When I suspected that Alex did, indeed, have autism, I tried to present my concerns when he was three years old to his pediatrician, who basically dismissed me as a fretting first-time mother. Although I pointed out his language delays and resistance to toilet training, he assured me that Alex couldn’t be autistic because “He’s too smart.” Moreover, he was certain that Alex’s delays in speech and toileting were simply because he was a boy. Trusting his professional judgment, we waited another year before insisting that Alex be tested for developmental delays. Had I instead trusted my mother’s instinct and ignored the pediatrician’s opinion, would a year earlier of intervention have made a difference in the long run?

“In His kindness God called you to share in His eternal glory by means of Christ Jesus. So after you have suffered a little while, He will restore, support, and strengthen you, and He will place you on a firm foundation.” I Peter 5:10

The bottom line is that I have made multiple mistakes as Alex’s mom. However, many of the choices I made were based upon trusting professionals whom I thought knew better than I did. Moreover, my intentions have been focused upon doing what I thought was in Alex’s best interests. When I allow my mind to wander into the “What if?” scenarios, I realize that the guilt I feel is unwarranted and does nothing to change things. Furthermore, I’m certain that God has forgiven any mistakes I have made in raising Alex. Instead of carrying around guilt, I must accept the gift of grace and be thankful.

“God saved you by His grace when you believed. And you can’t take credit for this; it is a gift from God.” Ephesians 2:8

As we celebrate Easter and the resurrection of Jesus, we know that through God’s sacrifice of His son, all of our sins are forgiven. To hold onto feelings of guilt diminishes the value of that ultimate parental sacrifice. Grace is not something to be earned but something to be appreciated because it’s given in spite of our mistakes. Instead of looking back on what I think I should have done differently, I need to look back on all that God has done to make Alex better and how our faith, hope, and love have been strengthened, trusting that He will guide us to the future glory He has planned.

 “Therefore, since we have been made right in God’s sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us. Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory.” Romans 5:1-2

Sunday, April 9, 2017

Search: Alex and Google

 
In a previous blog entry, I explained that one of the best ways to find out what Alex is thinking is to check his Google search history. Because his speech is still delayed, he doesn’t always verbalize what is on his mind. In fact, if I ask him what he’s thinking, he’ll often blurt, “Nothing!” to avoid having to explain his thoughts. Truthfully, most of the time, I’m not too surprised by the list that appears in his search history, and I’m relieved to discover that he’s not searching topics that would make me worry about him. Last night, I took a quick peek at his most recent searches just to confirm that he's using his iPad and Internet privileges appropriately and was pleased to discover that he is. Moreover, I found some of his current topics of interest pretty interesting.

For example, one of Alex’s favorite pastimes is eating, especially at restaurants, which his search history confirmed. Alex had searched Google for two nearby restaurants, Culver’s, which is one of his favorites, and The Port, a drive-in restaurant open only in the summer. He had also searched the Panda Express menu, probably curious about what they serve and what he can eat there on his gluten-free and casein-free diet; a Panda Express is currently under construction in our town. Besides these restaurant searches, he also had typed in “how to stop being on a gluten-free diet.” I guess he hopes that someday he won’t have to avoid glutens.

Another common theme in Alex’s searches is celebrities. To illustrate, he looked up the birthdays of former Chicago Cubs baseball player Sammy Sosa and singer Celine Dion. Alex includes Sammy Sosa in his prayers every night, and I’m guessing he was curious about Celine Dion after seeing her on The Voice television show. He also searched for information about his favorite college basketball player, Valparaiso University’s star player, Alec Peters. In addition, he wanted to know how much country singer Miranda Lambert and the former host of the game show The Price Is Right, Bob Barker, weigh. Because Alex needs to quantify people by numbers, he likes to know their birthdays, ages, heights, and weights. However, he also knows that asking this information can be considered rude, but Google can tell him this information without making him seem nosy.

One of his search topics could seem cryptic, but I’m fairly certain that it was also related to his interest in celebrities––dead or alive. He will frequently ask about certain famous people and want to know if they’re still living. He finds the musical group the Beatles especially interesting since two of the Fab Four are dead. If he hears something about one of them, he’ll invariable ask, “Is he one of the dead Beatles or one of the alive ones?”

Yet another one of Alex’s interests––statistics––appears in his search history. For instance, he was looking up long words, specifically those with ten letters and sixteen letters. Combining his love of mathematics with his love of meteorology, he had Googled “13 most likely states to have tornadoes.” Also, he studies gas prices religiously, so I wasn’t surprised to see that he was checking out Gas Buddy, which provides current gas prices at various stations in the area.

However, Alex is the ultimate Gas Buddy, whose eagle eyes seek out gas prices as we drive along and compare and contrast the different prices at different places. He’ll excitedly announce from the back seat, “The gas prices at Speedway in Chesterton are four cents higher than the gas prices at Family Express in Valparaiso!” We find that his longest and most enthusiastic spoken sentences typically revolve around gas prices. This is a far cry from when he was younger and got upset by gas prices, throwing things from the back seat or kicking our seats if he wasn’t pleased. In fact, we had figured out how to get around town without ever passing a gas station just to avoid the wrath of Angry Gas Buddy in the back seat. Thankfully, that’s another phase that has disappeared.

Perhaps because Alex can now verbalize better what he wants to communicate, he doesn’t get upset about gas prices and other concerns. Apparently, he finds language acquisition as interesting as I do. Specifically, he had searched the following two questions: “When did language start?” and “When did you [meaning himself because he still confuses his pronouns] start having language?” Alex’s development of language has been interesting because he mastered reading and then writing before speaking. Maybe as his speech has been developing (especially with regard to commenting on gas prices), he has been more curious about his early language skills.

In reviewing Alex’s search history, probably the most curious topic I found was helicopter prices. Hopefully, when he discovered how expensive they are, he realized that he can’t afford to buy one. However, the most thought-provoking question in his search history was “How long is a long time?” He may have wondered about that because we frequently tell him that something happened a long time ago when he asks about some historical event. For his mind that needs to quantify an amount, he was likely seeking some specific range of years. Unfortunately, Google’s answers could not give him the precise details he wanted. Maybe he could put together those two topics, as in, it will be a long time before Alex can save up enough money to buy a helicopter.

While we are fortunate that Alex, unlike many people with autism, can speak and tell us what he is thinking, we are even more fortunate that we can get a glimpse of his very active mind by monitoring his online activity. Although he may claim that he has nothing on his mind, his Google search history proves otherwise, reassuring us that he lives up to his childhood nickname, Mr. Curious, and still loves to learn something new every day.

“So I set out to learn everything from wisdom to madness and folly. But I learned that pursuing all this is like chasing the wind.” Ecclesiastes 1:17

Sunday, April 2, 2017

World Autism Awareness Day 2017

 
Today is World Autism Awareness Day, and yesterday began Autism Awareness Month. In anticipation of these commemorations, factions have been debating in the media primarily over two terms: acceptance and celebrating. For those who view autism as a defining personality trait instead of a disorder, acceptance of the condition as well as the person with autism is emphasized. Those parents who seek to make their children with autism better are accused of not accepting autism or their children. This is nonsense. That same faction views autism as something to be celebrated. However, for those dealing with extreme anxiety, debilitating seizures, painful digestive issues, upsetting self-injurious behaviors, and chronic sleep disorders, autism is a multi-faceted illness to be cured instead of celebrated. Do people celebrate cancer or dementia or any other disease that negatively impacts the quality of life for the patients and their families?

While I accept my son and love him unconditionally in spite of the autism that makes his life difficult, I do not celebrate autism or accept that autism determines his personality. We have seen the real Alex as the obstacles of autism have faded over time, allowing us to glimpse the brilliant mind and sweet soul behind the limited language, OCD, intense anxiety, and various physical ailments. Consequently, our abiding love for him drives us to help him continue to improve through behavioral therapy, music therapy, nutritional supplements, medication, gluten-free and casein-free diet, Epsom salt baths, and any other methods we deem safe and effective. We want him to be the best that he can be to make his life better, happier, and healthier. Isn’t that what all parents want for their children?

In many ways, Alex at age 25 is essentially a six-foot-tall preschooler. He cannot be left home alone, cannot dress himself, cannot fix his own food nor cut it into bite-sized pieces, cannot groom himself, and cannot ride a bike nor drive a car. He relies upon us for assistance with nearly every aspect of his daily living. Nonetheless, we are lucky, compared to many parents. After dealing with sleep issues when Alex was younger, he now sleeps peacefully through the night, and so do we. Unlike many people with autism, Alex does not have seizures, does not wander from places of safety, and does not still have to wear diapers. Thanks to thousands of dollars worth of medication and years of therapy, the extreme anxiety that led him to attack us aggressively both verbally and physically is now under control, and he manages his fears through calming techniques. Moreover, unlike many with autism, Alex possesses verbal skills––although still difficult for him––to express his feelings, thoughts, and needs. Because we have watched Alex struggle over the years with all that autism made difficult for him, we know how blessed we are that he has come this far. However, he still has a long way to go before he can be independent.

Since the rate of autism has skyrocketed in recent years, most people now know someone who has autism. However, unless they have lived with a child with autism, they probably don’t know what life with autism truly entails. Certainly, empathizing with anyone who has a particular condition proves difficult unless a person has experienced the circumstances first-hand. Even having raised a child with autism, I am often dumbfounded when I see statistics regarding autism and how it impacts those with the disorder and their families.

In honor of Autism Awareness Month and World Autism Awareness Day, I will go beyond symbolic gestures of wearing blue or lighting blue light bulbs. Instead, I will honor my beloved son, who loves numbers and statistics, and share the reality of autism with some eye-opening data provided by the National Autism Association.

“Autism now affects 1 in 68 children. Boys are four times more likely to have autism than girls. The rate of autism has steadily grown over the last twenty years. Autism is the fastest growing developmental disorder, yet most underfunded.”

“About 40% of children with autism do not speak.”

“Individuals with autism often suffer from numerous co-morbid conditions, including: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sleeping disorders, anxiety disorder, OCD, sensory integration dysfunction, immune and autoimmune disorders, and others.”

“The mortality risk among those with autism is nearly twice as high as the general population, in large part due to drowning and other accidents.”

“Nearly half of children with autism engage in wandering behavior. Accidental drowning accounts for approximately 90% of lethal outcomes.”

Despite these rather grim facts, the NAA also states, “Autism is treatable, not a hopeless condition.”

While April is the designated Autism Awareness (or to some, Autism Acceptance) Month, for many parents and their precious children, every day is filled with autism awareness. Some of us still tie our adult children’s shoes, still remind them to wipe their noses instead of picking them, fix their gluten-free and dairy-free meals and snacks, and can’t help but feel wistful when we see their typical contemporaries enjoying a life that we once hoped ours would know by now. Nonetheless, we continue to do the therapies we know will help, research for better methods and potential cures, and celebrate our children for the milestones they reach, not the disorder that made those milestones more difficult.  Moreover, we continue to hope that they will get better with time. Most of all, we pray to a merciful God to deliver our children from autism and to keep them safe until we find a cure.

“God is our refuge and strength, an ever-present help in trouble.” Psalm 46:1

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