Sunday, May 21, 2017

Finishing Strength

 
In our house, the month of May tests our endurance. As Ed and I finish up teaching for the school year, we find ourselves engaged in grading multiple papers and exams, sitting through end-of-the-year meetings, and trying to maintain the enthusiasm we had in August with students who would rather be outside enjoying the nice weather. Even though Alex continues his schedule of support services throughout the summer, May always seems to be difficult for him, too. Because he is quite intuitive, he likely senses the stress Ed and I feel trying to accomplish everything we need to do, despite our best attempts to keep things calm for Alex. In addition, the high pollen counts and unpredictable weather with varying air pressures along with his concerns about severe weather, namely thunderstorms and tornadoes, makes May difficult for him, as well.

Recently, he apparently caught the virus that was going around and making people lose their appetites. Fortunately, he doesn't seem to be in any discomfort and hasn't complained of anything bothering him. Not wanting him to lose weight and strength, we have encouraged him to eat and drink whatever appeals to him. Although he has been compliant, his diet still includes a limited range of soft foods, such as applesauce, pudding, and scrambled eggs. We keep trying to tempt him with foods we know he loves, but even when shrimp or meatloaf nears his mouth, he makes a face indicating disgust and tells us he’s not hungry. Our formerly meat-loving son who would eat nearly anything placed before him has become a vegetarian who favors fruit. However, we know with Alex that phases pass about as quickly as they appear, so we try not to fret about his current eating habits.

Other than his appetite, Alex appears healthy and content, still energetically happy hopping through the house and enjoying his usual activities. However, we have noticed that the tremor in his hands caused by one of his medications seems to have increased, making eating more difficult for him, and requiring more assistance from us. In addition, he is not as eager to go places as he usually is, which makes us think he’s still not completely recovered from the virus he had a couple of weeks ago.

The other day, Ed mentioned that he had noticed a white film in Alex’s mouth when giving him pills in the morning, and he wanted me to take a look in his mouth. Armed with a penlight, I couldn’t see any redness or sores, but I did see the telltale milky film we see when he has yeast overgrowth in his digestive tract. After more than a year of having the yeast under control, the beast sadly seems to be back. With the extremely warm and wet weather we’ve been having along with an immune system compromised by a strange virus, Alex was susceptible to the invasion of yeast in his digestive system. No wonder he hasn't been interested in eating much! However, we were thankful that the usual primary symptom––irritability, sometimes displayed in a meltdown––has not been present.

Fortunately, we had the prescription medication Diflucan on hand and gave him a dose on Friday and will give him the second dose tomorrow, praying that one round of antifungal will wipe out the yeast in his digestive system and heal him. Next weekend, we will take him for his routine six-months lab tests, which will help his doctors and us see if anything else could be contributing to his change in appetite and increased shakiness. In addition, he has his usual biannual appointment scheduled in a couple of weeks with the nurse practitioner who oversees his anxiety medications, so we can consult with her about our concerns. Hopefully, he’ll be all better by then so that we can spend the appointment talking about how well he has done since he last saw her in December.

With all the other stresses at the end of the school year, I really didn’t need having to worry about Alex’s normally healthy appetite being off. Feeling overwhelmed and fatigued, I have briefly toyed with the idea of having the lesson plans for the final two weeks of school for my middle school students revolve around watching YouTube videos while playing with fidget spinners. Of course, they would be thrilled, but I know that’s not what's best for them. Moreover, I know that I would not be giving them my best, which I always strive to do. With eight class days to go with my students, I will pray for strength, patience, and peace, knowing that God has me where He wants me to be for now, relying upon Him and waiting for what He has planned, and continuing to hope for Alex’s complete healing.

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah 40:3

Sunday, May 14, 2017

If Not For You

 
“If not for you
Winter would have no spring
Couldn’t hear a robin sing
I just wouldn’t have a clue
Anyway it wouldn’t ring true
If not for you.” ~Bob Dylan, “If Not For You”

Dear Alex,
If not for you, I wouldn’t have fulfilled my lifelong dream to be a mom. Thanks for letting me be yours.

If not for you, I wouldn’t be a NASCAR fan. Thanks for sharing one of your favorite sports with me so that I could enjoy it as much as you do.

If not for you, I wouldn’t have learned to wait patiently. Thanks for teaching me that good things, indeed, come to those who wait.

If not for you, I wouldn’t know the ABC Chicago meteorologists on a first-name basis. Thanks for making me as enthusiastic as you are about watching the weather reports on television.

If not for you, I wouldn’t be assertive when I need to be. Thanks for giving me reasons to stand up for what is right, making sure you get what you need in life.

If not for you, I wouldn’t know who, when, or where the Chicago Cubs are playing on a daily basis. Thanks for including me in one of your favorite pastimes so that we can cheer on our team together.

If not for you, I wouldn’t have had met the wonderful people who comprise your support team. Thanks for allowing your friends to be my friends, too.

If not for you, I wouldn’t truly appreciate the value of numbers and patterns in time, dates, addresses, and pi. Thanks for helping me overcome my dislike of math, something you adore.

If not for you, I wouldn’t have seen an endearing side in your daddy as he speaks sweetly and gently to you, makes sound effects to entertain you, and talks about you with such loving pride. Thanks for showing me what makes me love him best: his love for you.

If not for you, I wouldn’t pay much attention to the stock market or gas prices. Thanks for keeping me apprised of the daily trends you find so fascinating and making sure that I always go to the gas station with the lowest prices and keeping me honest by having me give you my receipts.

If not for you, I wouldn’t have known the value of a smile. Thank you for warming people’s hearts with your sweet smile that endears you to those who see the pure heart behind those cute dimples and twinkling eyes.

If not for you, I wouldn’t have become familiar with the expressions you have created in your clever mind. Thanks to you, I know what “bad imagine clothes” and “scroungy voices” are and why they must be avoided at all costs.

If not for you, I wouldn’t have realized that the only thing better than reading a good book is to read it aloud to someone you love. Thanks for appreciating books as much as I do and for indulging me in reading to you when you were able to read on your own.

If not for you, I wouldn’t have comprehended how much trivia I have stored in my brain in my lifetime. Thanks for insisting that we watch Jeopardy every afternoon so that we can beat most contestants by combining our acquired knowledge.

If not for you, I wouldn’t know the depth of God’s love, grace, and faithfulness. Thanks for your steadfast faith that reminds me to trust that everything has a reason and that God will always take care of us. I have no doubt that He gave you to me to teach me the most important lessons I needed to learn in life, which makes you my greatest blessing.

Love always,
Mommy

“Children are a gift from the Lord; they are a reward from Him.” Psalm 127:3

Sunday, May 7, 2017

Learning Continues

 
When Alex was little, the theory regarding developmental windows of opportunity caused needless anxiety for me, fearing that we only had a short time for him to learn needed skills. Promoting early childhood learning and early intervention for children with developmental delays, this windows concept stresses that optimal learning takes place between birth and the age of four. As I tried to teach preschooler Alex everything I thought he needed to know, I kept picturing that dreaded window slamming shut as I was running out of time.

Later research discovered the concept of brain plasticity in which the brain can modify its structure and function after bodily or environmental changes, such as brain trauma or disease. In fact, the brain can be remarkably adaptable, allowing further learning and modified behavior at any age, even after that learning window has supposedly long closed. As a teacher of adolescents, I know learning opportunities exist after age four because I see growth and development every school year in the students I teach. Moreover, I see Alex continue to develop his skills over time, even though he lags behind his peers due to autism.

A few days ago, a fascinating article regarding the continued ability to learn appeared in an online article in UCR Today. [To read this article, please click here.]  In “You’re Never Too Old to Learn That,” Mojgan Sherkat describes the research of University of California Riverside psychology professor Rachel Wu, whose paper “A Novel Theoretical Life Course Framework for Triggering Cognitive Development Across the Life Span” was recently published in the journal Human Development.

Professor Wu asserts that people develop habits and learning strategies throughout their lives that either encourage or discourage cognitive development. While infants and children learn many skills through broad learning experiences, adults learn to specialize their learning for their careers, becoming expert at certain skills. This specialized learning leads to cognitive decline, first in unfamiliar settings and later in both unfamiliar and familiar areas. To prevent the cognitive decline with age, people should engage in “broad learning experiences,” continuing to learn new skills.

Moreover, she contrasts the differences between broad learning, usually seen in children, and specialized learning, usually seen in adults, in six ways. For example, broad learning focuses upon learning new patterns and skills outside the comfort zone, whereas specialized learning shows preference for familiar routines. In addition, in broad learning, teachers and mentors guide the learners; in specialized learning, learners do not have access to experts who can help them. Also, while broad learning holds the belief that abilities develop with effort, specialized learning holds the belief that inborn talent is more important than effort. In another contrast, during broad learning, mistakes and failure are allowed as part of the learning process, but these same mistakes can have serious consequences in specialized learning, such as being fired from a job for incompetence. Yet another difference between the two types of learning is the serious commitment to learning found in broad learning versus little commitment to learning found in specialized learning, often due to time constraints or giving up when the task becomes difficult. Finally, broad learning, as its name suggest, involves learning multiple skills at the same time; specialized learning involves learning one––if any––skill at a time.

Consequently, to keep the mind sharp, adults must return to the learning styles they engaged in as children. As Professor Wu explains, “What I want adults to take away from this study is that we CAN learn many new skills at any age. It just takes time and dedication.” Thus, the proverbial “old dog” apparently can be taught “new tricks” with the proper amount of effort and willingness to learn.

Often, people will ask me what Alex is doing these days, now that he is a twenty-five-year-old young man living with autism. Because he cannot yet function in a job setting and because we have not found a day program appropriate for his needs, he is at home with us. However, he is not just sitting around; home schooling continues for Alex as we give him as many opportunities to learn as possible. Knowing that the window of opportunity to learn has not closed, we provide him with guidance, encouragement, and the tools he needs to learn. He spends his days reading, researching online, engaged in conversation with us, and getting out in the community by going to restaurants, concerts, sporting events, and other activities he enjoys. As career teachers and parents, Ed and I hope to continue to develop this broad learning so critical to Alex’s continued progress.

Last week, we were able to see how Alex learns through a series of unusual events. Apparently, he had some virus (as I later discovered his music therapist and one of my colleagues also had experienced last week) that caused him to have no appetite. Since Alex has always been a good eater, this caught us totally by surprise, especially when he wouldn’t even eat his favorite foods, such as shrimp, white chili, and meatloaf. Ever the researcher, Alex delved into his various huge medical books and Internet medical websites, trying to diagnose his ailment, just as many of us do when we have odd symptoms.

Although we tried to reassure him that he had nothing serious and encouraged him to eat a few things that appealed to him, such as applesauce and Jello, he decided to begin a new search on mortality. Since Alex has never had to deal with the death of anyone close to him, this may have been his first time exploring the concept of death. Along with recently having discussed the meaning of Easter and Jesus’ death and resurrection, Alex decided to study the abstract concepts of life, death, and immortality. However, we, along with his therapist, had to reassure him that he was not going to die from a brief loss of appetite. Nonetheless, our conversations with him revealed that he continues to develop a depth of understanding about the world around him, even those difficult to comprehend issues of life, death, and eternal life promised by the sacrifice of Christ. Clearly, Alex continues to develop his cognitive skills, and we eagerly anticipate all that he will learn and share with us in that amazing mind God has given him.

“That is what the Scriptures mean when they say, ‘No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love Him.’” I Corinthians 2:9

Sunday, April 30, 2017

Truly Aware

 
Today ends another Autism Awareness Month. As many autism parents point out, every month, every day, and every minute (all 525,600 of them in a year, as Alex reminds me) mean autism awareness for our families. Beyond the blue lights and puzzle piece ribbons is the reality that more and more children are being diagnosed with autism, and the mainstream medical community seems to offer no real reason why. Moreover, the educational system and therapeutic support systems cannot handle the influx of all these kids with autism. As they age out of the educational system, programs for adults with disabilities cannot handle them, either, and many are not getting the services they need. That is true autism awareness.

Like many parents of adults with autism, we have our beloved son at home with us, requiring 24/7 care. He needs structure and routines to keep his anxiety from escalating. In fact, we keep a schedule posted on our refrigerator door for him to consult anytime he is concerned about what will happen next, even though he knows that we honor his precious timetable.

9:00 A.M.—Get up, take pills with juice

10:30 A.M.––Eat breakfast

11:00 A.M.––Brush teeth

11:30 A.M.––Eat lunch

12:00 P.M.––Change clothes

4:30 P.M.––Decide what’s for dinner

5:00 P.M.––Eat dinner

6:00 P.M.––Take vitamins; bath time

7:30 P.M.––Have dessert/snack

10:00 P.M.––Take pills, brush teeth, bedtime

Just to clarify, Alex needs help with every single item on this schedule. He takes a dozen pills three times a day and needs us to administer them to him, even though he can thankfully swallow pills. Because his hands shake from one of the medications to keep his anxiety under control, and because he has poor fine motor skills, he cannot pour his own drinks or prepare his own food. He also lacks motor planning skills, which means he needs help with brushing his teeth and changing his clothes. For this reason, I think of our family life in half-hour increments, knowing that Alex will probably need Ed or me to help him with something in the next thirty minutes. In addition, he has other tasks he assigns me at specific times, such as working the newspaper Sudoku puzzle at 1:30 and watching Jeopardy with him at 3:30. Also, his afternoons are scheduled with therapy sessions that I coordinate for him. Although he has become more patient over time, he values punctuality and can become unnerved if his schedule doesn’t go as planned.

Mind you, we are extraordinarily lucky parents in the autism lottery. We have a child who can verbalize––albeit awkwardly––what he wants and needs; only about half of people with autism are verbal. Unlike half of people with autism, Alex does not wander away from safe places so that we don’t have to worry that he’ll drown in a pond or get hit by a car in traffic or a train on railroad tracks. We are also fortunate that he can use the toilet independently and does not have chronic diarrhea or constipation, as many with autism do. Moreover, he doesn’t smear his feces as many do; he even flushes the toilet and puts down the seat, so I count my blessings daily on that score, especially since he was thirteen before he was potty trained. Also, we are grateful that Alex has overcome the sleep issues that plague many with autism so that we can all enjoy a good night’s rest that many families cannot.

God has also blessed us with a tremendous support team of professionals who genuinely care about our family and have helped Alex make good progress in his skills. Sadly, many families do not have these essential resources to help them. After dealing with extreme anxiety that fueled aggression, proper medication and therapy have allowed Alex to cope with his emotions so that he can enjoy life and so that we can have a peaceful family life. We know just how precious this existence is.

While we truly appreciate the progress Alex has made, we know that many families face struggles every single day because of autism, and we can empathize with the frustration they feel. I know how overwhelmed I can feel trying to meet Alex’s daily needs, and I can imagine that those with children who have even greater needs must be even more frazzled. We need to move beyond autism awareness and autism acceptance to autism action. Something needs to be done to help families cope with the daily burdens of autism: more useful research, more funding, more resources, more support. In the meantime, I continue to pray for a cure for autism so that Alex and others with autism will be healed completely and their families who love them can enjoy more abundant lives, freed from the obstacles autism presents. When the need for Autism Awareness Month disappears––now, that will be truly something to celebrate!

“O Lord, if You heal me, I will be truly healed; if You save me, I will be truly saved. My praises are for You alone!” Jeremiah 17:14

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