Milestones

A few days ago, as I was reorganizing some drawers and closets, I ran across Alex’s baby book. I hadn’t looked at it for quite a while and had forgotten how carefully I had recorded the events of his first year, describing his first trips, Christmas, birthday, and other events in detail. During those first twelve months, Alex met his major developmental motor milestones within the normal range. According to my notes, Alex first turned over at 2 ½ months, sat up alone at seven months, began to crawl at 8 ½ months, and took his first step around his first birthday. What is more revealing, however, is to note the blanks I have left in his baby book: “Mother was first recognized at age___, “ Father was first recognized at age ___,” “That little hand first reached for ___ at age ___,” and “The very first word spoken was ___, and it was said at age ___.” Now I realize that these were all red flags pointing to autism, but I kept waiting, hoping to fill in the blanks.

I have heard from other mothers of children with autism that they, like me, could no longer write in their children’s baby books once they suspected something was wrong. After getting a diagnosis of autism, some put their baby books away, as I did, partly because we were too busy helping our children get better, but partly because we were overwhelmed by uncertainty as to what the future might hold for those babies. As I scanned through the baby book, I studied the detailed account of immunizations that we faithfully made certain Alex had, and I wonder if our lives would have been different had I not been so diligent. Having Alex vaccinated exposed him to the preservative, thimerosal, which was likely responsible for the mercury poisoning we discovered he had when we had him tested at age nine. We will probably never know how much damage those toxins might have had on his developing brain.

Near the end of the baby book, I found a brief narrative that I wrote a few years after Alex was diagnosed with autism summarizing what had transpired during those years I left spaces blank. I wrote the following explanation for what had happened to Alex: “At age four, Alex was diagnosed with hyperlexia, an autism spectrum disorder characterized by precocious reading skills. (Alex began reading at age three.) and delayed language and social skills. He began speech therapy at age four years, three months, and he began occupational therapy for delayed fine motor skills and sensory defensiveness at age four years, ten months.” The objectivity in this description belies the range of emotions I have felt through the years in dealing with autism. Had I known what I know now when I wrote that paragraph, I could have faced the future with far less fear and even greater hope. Whenever I consider what the future holds for Alex, I remember that he eventually learned to recognize Ed and me, reach for things he wanted, and speak thousands of words. While Alex masters skills on his own time table, God teaches us patience. With anticipation and faith, we wait for the next milestone to be met and celebrate how far he has already come.

“And I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

Music Therapy

One of the best things we’ve done for Alex is to enroll him in music therapy. Although I had heard about music therapy several years ago, I was unable to find a local music therapist at that time and put the idea aside for a while. Then Alex went through the uncooperative adolescent stage where he might not have been compliant for the music therapy sessions. Last summer I read a news article online about the benefits of music therapy for children with autism, and I decided to try again to find a music therapist for Alex. A Google search led me to a group here in town that not only provides music therapy but also has experience in working with children who have autism. I felt this was a sign that we should pursue music therapy for Alex at this time. When I spoke with their director of music therapy, I was impressed by her warmth, enthusiasm, and expertise. After answering all of my questions, she suggested assigning Alex to their newest music therapist, a young man who had just completed his internship.

When I first met Noel, Alex’s music therapist, I appreciated his calm demeanor and his interest in learning more about Alex and how autism affects him. Moreover, he provides a good role model for Alex because he acts “with it,” showing Alex how to behave in a way that is appropriate for his age. A typical music therapy session consists of a variety of activities. Noel begins the session by playing guitar and singing the “Hello” song in which Alex must respond to the questions asked in the lyrics. At other times, Noel plays the guitar and has Alex accompany him on a variety of percussion instruments: drums, maracas, tambourine, or castanets. Sometimes, Noel rewards Alex by letting him listen to a jazz CD, knowing how much Alex likes jazz. In addition, Noel has been teaching Alex some basics about music and how to read notes and having him play songs on tone chimes or an electronic keyboard. The session, which lasts forty-five minutes, ends with Noel playing guitar and singing the “Goodbye” song, which, like the opening song, requires that Alex respond at certain points to the words of the song. After Noel finishes the session with Alex, he spends a few minutes going over with me how the session went and comparing notes about Alex’s behavior.

Music therapy is interesting because it is rather holistic, focusing not just on music and the sensory issues that surround it, but also language, social, and motor skills. One of the first things that we noticed when Alex began music therapy is that he was very relaxed and calm after a session, and that mellow mood lasted the rest of the day. Another positive change we noted is that Alex developed a sense of rhythm he’d never had before. Prior to music therapy, Alex would typically clap or sway off tempo, but within a few weeks of music sessions and after learning how to play the percussion instruments correctly, he could clap in time to the music. We have also found that Alex’s language skills are improving because Noel works with him on speaking clearly and using an appropriate volume. Previously, Alex would often speak softly—I suspect because he was self-conscious about his speech weaknesses—but Noel’s gentle insistence that Alex speak up has helped his self-confidence and his ability to be heard. His speech has also become more conversational since beginning music therapy; perhaps music is making connections in his brain that enhance his language skills. As his language skills have improved, his social skills have increased, as well, because he can better interact with others. Through his music sessions, he has practiced how to say hello and goodbye to people, and he has become better at following directions. Moreover, his attention span seems to have improved as he is more focused. Whether music therapy is responsible for all of these changes, or if it’s a combination of the therapy and maturation, we are grateful for the positive impact music therapy has made on Alex’s progress in several areas.

“Praise the Lord, for the Lord is good; celebrate His lovely name with music.” Psalm 135:3

Music

Alex has always loved listening to music, and music has consistently had a soothing effect upon him. When he was very small, he enjoyed watching and listening to the Disney Sing-Along videos. While I suspect that he delighted in seeing the lyrics as they went across the screen, he also found the Disney tunes catchy. As a toddler, he often requested for my mom to sing “This Old Man” to him. That song has special appeal for him because of the sequence of numbers in the lyrics (“This old man, he played five, he played knick-knack on my hive...”). His all-time most beloved song, however, is “Happy Birthday.” Considering he associates that song with cake and presents, it’s not surprising he likes it so much. Actually, he appreciates a variety of types of music with one exception—rap. Clearly, he has discriminating taste, or else he has been influenced by Ed and me, who also don’t care for rap music.

One of Alex’s preferred styles of music is instrumental jazz, which is also one of Ed’s favorites. The lack of lyrics probably allows Alex to concentrate on the music without the distraction of words. The two of them share an appreciation for Miles Davis, John Coltrane and other jazz greats, and they like to listen to Ed’s collection of jazz CD’s together. Last spring, we took him to a jazz concert at Valparaiso University, and Alex was in his element, swaying to the music, clapping, and smiling from ear to ear. Additionally, Alex really likes country music, and he especially enjoys watching country music videos on television with us. His most admired country singers are Kenny Chesney, Alan Jackson, and Gretchen Wilson. If he hears any of their videos come on TV, especially “When the Sun Goes Down,” “It’s Five O’clock Somewhere,” or “Redneck Woman,” he drops what he’s doing to watch the music video.

Another type of music that Alex is especially fond of is gospel, which he likes to listen to with me. He prefers gospel groups who sing four-part harmony, such as Ernie Haase and Signature Sound or the Statler Brothers, and he finds the deep voices of their bass singers especially pleasing. A few months ago, we took him to a gospel concert at the university, and he loved the harmonies. As he did at the jazz concert, he swayed and clapped to the rhythm, smiled, and applauded with appreciation for the music he enjoyed so much. An added bonus for him was the live performance by his all-time favorite American Idol winner, Ruben Studdard. This special experience was one he proclaimed that he liked “one hundred percent” because it was “special.” Alan Jackson’s Precious Memories, a collection of traditional hymns, ranks as Alex’s best-loved CD. We keep this CD in my car and play it every time he rides with me. In addition, I have the songbook that accompanies the CD and play these familiar hymns on the piano. One evening while I was playing, I suddenly heard his soft voice behind me singing, “How great Thou art, how great Thou art…," which brought tears to my eyes because he rarely sings. His favorite song on the CD, though, is “In the Garden, “which was also my grandmother’s favorite hymn. When he jumps in the car, fast forwards to play number six, and the strains of “I come to the garden alone…” come over the speakers, a contented smile spreads across his face. I imagine that his great-grandmother smiles in heaven as she watches her great-grandson very pleased by the song she also loved so well.

“Speak out to one another in psalms and hymns and spiritual songs, offering praise with voices and instruments and making melody with all your heart to the Lord.” Ephesians 5: 19

Sensory Integration Therapy

Along with Alex’s language delays, we also needed to address his sensory issues when he was little. Many children with autism display characteristics of sensory integration dysfunction. While some children are overly sensitive to sensory stimuli, such as loud sounds, others need sensations to calm them, such as spinning. Alex was an interesting mix of both: his hearing and sight were overly sensitive, but his sense of touch needed stimulation. After reading about sensory issues on the Internet, I found an excellent book by Carol Stock Kranowitz, The Out-of-Sync Child, which not only explains sensory integration issues clearly, but it also provides simple suggestions and ways for parents to help children cope with the problem. Once we understood that some of Alex’s behaviors resulted from his nervous system’s inability to process properly the messages his senses were sending him, we worked at desensitizing him to overwhelming stimuli and teaching him appropriate strategies to fulfill his need for calming himself.

Like many children with autism, Alex’s eye contact when he was younger was poor. He had trouble looking and listening at the same time. I’ve since read that people with autism often cannot process both the sights and sounds when people talk to them, so they must look away to avoid becoming overwhelmed. Over time, Alex’s eye contact has improved; I suspect that visual stimuli bother him less as he’s matured. He has always been light sensitive; from the time he was very young, he has nearly always worn sunglasses when he’s outside. If he didn’t have his sunglasses, he would cover his eyes with his hands to block the light. In addition, fluorescent lights with their almost imperceptive blinking bother him sometimes, and he has worn sunglasses in stores at times to help him cope with this annoyance. Along with his sight sensitivities, he has always had overly acute hearing. When he was a baby, he’d pick up his head when the furnace came on, even though the sound was barely noticeable. As a toddler, he was terrified of the vacuum cleaner and hair dryers, and he would cover his ears and sometimes cry if he heard loud noises. After reading about auditory integration therapy, which is used to help children with autism who are bothered by sounds, I looked for a similar program we could do with Alex at home. AIT requires intensive therapy sessions and wearing headphones, which I knew Alex couldn’t handle. Fortunately, I found the EASe disc, a CD consisting of instrumental music with various modulated sound frequencies, and we purchased it for him to listen to on our home stereo. This strange music had an instantly calming effect on him, and he gradually became less sensitive to noises. He stopped being upset by loud sounds, and he quit covering his ears. The $60 we spent on the EASe disc was worth every penny for the rapid improvements we saw in him.

While Alex needed sights and sounds toned down, his sense of touch craved stimulation. As a toddler, he was most content sucking his thumb while rubbing the tags on his clothing. Also, he often chewed on his shirt collars. To save his shirt collars from getting wet as well as holes chewed in them, his occupational therapist gave him rubber tubing to chew on instead. In addition, we had a baby gum brush with rubber tips (also known as a NUK brush) that he liked me to rub on the roof of his mouth. His occupational therapist also taught me how to do deep joint pressure, where I would gently push on his wrists, elbows, shoulders, knees, and ankles as part of sensory integration therapy. For another sensory activity, she gave me a scrub brush like those surgeons use to wash their arms and hands prior to operating. I used this brush with its soft plastic bristles to brush his arms and legs in a specific way she had shown me to stimulate his sense of touch. By doing these sensory exercises with Alex, he became much calmer. Recently I read that some people with autism have trouble feeling their bodies unless they are in water. Knowing how much a bath relaxes Alex, I suspect that being in warm water allows him to have a sense of himself in space that he doesn’t always have. Thankfully, Alex has made significant progress in coping with his sensory issues; sensory integration has helped make his world less stressful by enabling him to deal with stimuli that used to overwhelm him.

“For since the world began, no ear has heard and no eye has seen a God like you, who works for those who wait for him!” Isaiah 64:4

Sleep

When Alex was a baby, my mom shared with me an adage her mother had taught her about babies: “The more they sleep, the more they sleep.” While this advice seems nonsensical, I found it absolutely true. If Alex slept well at night, he took long naps, and if he rested comfortably during his naps, he got a good night’s sleep. Fortunately, Alex nearly always slept well at night and during daytime naps, which made him a content baby. Early on, we established routines to calm him before bedtime: a bath, a story, prayers, and a goodnight kiss. For many years, he liked me to read Goodnight Moon every night; while I grew tired of the great green room and the little old woman whispering, “Hush,” Alex loved that part of the story. When he was a little older, he preferred to hear the Veggie Tales’ book Time for Tom, which I liked, as well, and I quickly memorized its catchy rhyme and cadence. Like clockwork, Alex happily and faithfully went to bed at 7:00 and slept soundly about twelve hours through the night.

When Alex was around five-and-a-half years old, he suddenly stopped sleeping well. We would try to put him to bed at his regular bedtime, but he was no longer able to settle down and go to sleep right away, as he had in the past. Uncertain as to what had triggered the abrupt change in him, we missed our good sleeper. He would often keep popping out of his room until ten o’clock, and we’d keep taking him back to his bedroom. Moreover, we would sometimes find him wandering around the house in the middle of the night. Several times, we would find him sitting in the living room recliner with the television on, watching The Weather Channel or CNN. So that we could get some sleep, we would put him in bed with us, where he would finally stay. Three people in a bed, however, made a crowd, so one of us would usually go sleep in our guest bed or in Alex’s bed. Sometimes after Alex was asleep, he’d hog our bed, and some nights, we three wound up in three separate beds, but at least we were able to get some rest that way.

After a few weeks of Alex’s nightly wanderings, I started researching the sleep habits of children with autism and discovered his behavior was not untypical. Many parents reported that their children greatly benefited from taking the supplement melatonin prior to bedtime to help them go to sleep and to rest peacefully through the night. I consulted with Alex’s doctor, who assured me that melatonin is perfectly safe, and she agreed that this supplement would likely help Alex without having any negative side effects. The pineal gland in the brain naturally produces the hormone melatonin, which helps regulate sleep, but research shows that some children with autism have low levels of melatonin, impairing their sleep. Consequently, melatonin supplements can improve sleep patterns and have the added bonus of acting as a powerful antioxidant to protect the body. After giving Alex his first dose of melatonin an hour before bedtime, we watched him yawn and gradually get drowsy. He went to bed earlier that night, fell asleep quickly, and slept soundly through the night in his own bed. The next morning, he awoke in a pleasant mood, alert and happy. For us, melatonin made miraculous changes; we all could sleep peacefully now. Alex has continued to take melatonin supplements with consistently positive results through the years, although we have increased the dosage as he has grown. After his bedtime prayers and a goodnight kiss, he still settles down happily in bed every night, saying with me—as we have for years: “Good night, sleep tight; don’t let the bedbugs bite!” before he contentedly drifts off to a sound sleep until morning.

“In peace I will lie down and sleep, for you alone, O Lord, will keep me safe.” Psalm 4:8

Speech Therapy

Delayed language development was one of our first clues that Alex had autism. While he would say some words and short phrases, his vocabulary and conversational skills were quite limited. In addition, he had trouble articulating some sounds, so his speech wasn’t always clear. Once he received a diagnosis of autism, the school district provided speech therapy as part of his I.E.P., or individualized education program. Considering how much language impacted his development and social skills, the amount of speech therapy offered to him was—as is often typical in special education—much less than he really needed. Alex only received two twenty-minute sessions of indirect speech therapy and one twenty-minute session of direct speech therapy per week. Indirect speech therapy can be basically any language-related activity, and even the direct sessions do not have to be one-on-one with the therapist. Consequently, we supplemented the school speech therapy with private speech therapy.

The school speech and language therapists are overworked with caseloads much too heavy to individualize for the varied children with whom they work. My impression was that the two who worked with Alex didn’t have much experience with autism, either. The first speech therapist assigned to Alex gave me no feedback, despite my repeated requests and offers to supplement her lessons at home. We happened to see her at the library one day, where I specifically asked what I could do to help Alex’s speech. She told me, “Just try to get him to talk because I can’t get a word out of him!” Since Alex was cooperative and would say what he could, her lack of success with him didn’t give me much confidence in her ability or her efforts to work with him. He was given a different speech therapist the following school year, and she would not update me on his progress, either. She simply told me that Alex wasn’t happy about having to share his speech sessions with another boy, nor were we since we felt he needed individual attention during that brief weekly session. I asked to observe her to see what kinds of lessons she was doing with Alex and was disappointed to discover that all she did was follow him around during free time in preschool class and write down what he said. She didn’t try to engage him at any time; she just recorded data. If this was typical of the therapy sessions, no wonder they weren’t eager to report what they were doing with Alex. Moreover, his lack of progress in speech was not surprising, and we knew we needed to hire someone to work with him who would put forth more effort to encourage him to talk.

Knowing that Alex needed intensive language therapy, we found a local private speech therapist who recommended two individual speech therapy sessions of thirty minutes each per week. Even though she and our pediatrician submitted letters explaining Alex’s need for speech therapy, our insurance company denied coverage, and we had to pay for private speech therapy ourselves. Had Alex been an elderly stroke victim, they would have paid for speech therapy, but they refused to cover a four-year-old child because they routinely denied paying for any therapies related to autism. Thankfully, we could afford to pay for speech therapy ourselves, but not all parents have this option. Alex’s private speech therapist actively involved him in various activities to improve his vocabulary, conversational skills, and his articulation to help make his words clearer. She provided feedback after every session so that we had a good indication of what she was doing to help him. In addition, she had me make flashcards for him with certain sounds that he needed to improve. I would write the words on one side and put pictures from magazines and catalogs to illustrate the words on the other side. Alex and I would go over these flashcards every day to improve his speech; this gave me specific skills to work on with him, which was beneficial. In addition, she used a speech and language game-based computer program with him called Earobics, and we purchased a home version, as well, to supplement what he was doing with her. (At that time Earobics was marketed to parents and speech therapists as a way to improve auditory skills and receptive language so that children could better understand what they heard. Now they promote the program to schools as a phonics reading program.) By working cooperatively with his speech therapist, we were able to improve Alex’s language skills, which lessened his frustration of not being able to communicate effectively. Speech is still a weakness for Alex, but he continues to make progress as he strives to interact with others.

“Let your conversation be gracious as well as sensible, for then you will have the right answer for everyone.” Colossians 4:6

Complements

Tomorrow Ed and I will celebrate our 22nd wedding anniversary. Along with our unconditional love for each other and Alex as well as our mutual respect, a key to the success of our marriage has been how well we balance and complement each other. While Ed is calm and take-charge, I am energetic and organized; these traits serve us well. For instance, we have an understanding about the division of tasks. If I call the plumber, Ed will explain the problem to him once he arrives. If I make the doctor’s appointment, Ed will go. In raising Alex, we have needed to pull together—sometimes as a couple and other times taking turns as individuals—to make the best life for our family.

Over the years, we have learned how to work cooperatively to help Alex. While I suspect that Ed sometimes wishes that there were a mute button for me, he patiently listens and offers his opinions when I share with him the autism research I have found. He has always trusted my judgment on medical options and various therapies, and he has consistently supported which paths I wanted to take to help Alex, even those that were somewhat unconventional. That faith in me has given me confidence to pursue a variety of interventions that have made Alex better. In addition, we have learned to work together with Alex to accommodate his needs, including sharing home schooling responsibilities. Sometimes we have had to make up stories to relieve Alex’s fears, each one contributing part of the fabrication, supporting the other, to convince Alex there was no reason to worry. Other times, we had to maneuver Alex physically to prevent his having a meltdown in public, a strange dance where we both knew the rhythms to move him deftly. Ed has jokingly said that the two of us could work for the Witness Protection Program because we could get Alex in and out of places without anyone noticing he was there—sometimes we were on either side of him and holding his hands, and other times one walked in front of Alex while the other walked behind him. By collaborating, we have kept Alex safe and content.

Fortunately, because of our job schedules, one or both of us have always been home with Alex. In fact, we were both home with him for the first eight months of his life because I was on maternity leave, and Ed was on sabbatical from teaching his college classes. Early on, we shared responsibility for Alex’s care, including feedings and diaper changes, adopting a schedule that worked well for us. Since Ed is a night owl, he would stay up late and give Alex his 2 A.M. bottle, and because I’m a morning person, I would get up to feed him at 5 A.M. Several years later, when we had to do round-the-clock chelation to eliminate the toxic metals in Alex’s system, we adopted a similar schedule. Ed gave Alex the midnight pill, we both got up to do the 3 A.M. dose, and I gave him his chelation medication at 6 A.M. I sometimes refer to our schedules during the school year as tag-team parenting because Ed is home with Alex in the mornings while I’m teaching, and then I’m home with Alex in the afternoons while Ed is teaching. On the evenings that Ed isn’t teaching classes, we’re both home, and we’re fortunate to have weekends and summers to spend together as a family. Sometimes tag-team parenting has taken on new meaning when Alex was going through challenging phases. When one of us needed a break from Alex’s demands, the other stepped up and took care of him. I am baffled how single parents—and there are many of them—raise children with autism alone. Whether providing support, allowing one parent to have free time, or working together to help the child, a strong marriage is a blessing for the parents as well as the child with autism. When the passage from I Corinthians was read at our wedding, I had no idea how prophetic those words truly are; now I am grateful for the steadfastness, faith, hope, and endurance love has given us, strengthening our marriage as we raise the precious son God has given to us.

“Love never gives up, never loses faith, is always hopeful, and endures every circumstance.”
I Corinthians 13:7

Comedian

Contrary to the stereotype that people with autism lack a sense of humor, Alex is really funny—at least we think so. Certainly, language issues and problems with social skills that people with autism often have would make humor, with its verbal irony and subtleties in facial expressions and tone of voice, more difficult. Nonetheless, Alex sees himself as amusing (98% funny on his own humor rating scale) and often lets loose with a delighted, uninhibited laugh. He also has a phony laugh that he uses for humor that would make most people groan; he’ll say, “Ha, ha, ha, that’s a joke.” Somewhere in between is his Ernie from Sesame Street chuckle, which sounds like a repetition of soft k sounds. Whether he intends his comments to be funny or not, he will join in laughing if others find his remarks entertaining. He truly enjoys making people laugh.

Like most kids, many of Alex’s funniest comments are unintentional. For example, when we’re watching NASCAR races, he doesn’t hide his disdain for the Busch brothers, Kurt and especially Kyle. If they crash their cars at some point in a race but walk away unhurt, Alex will gleefully say, “Kyle/Kurt Busch crashed! That’s okay; we don’t like him anyway!” Perhaps his blunt honesty is what makes this remark funny to us. When he was little and didn’t want to do a particular task, such as picking up his toys, he’d make us grin by giving the excuse, “That’s too hard for little hands!” During his adolescent years, he would get frustrated because I wouldn’t let him do everything he wanted to do. Having taught middle school for several years, I knew the importance of consistent rules, and this frustrated Alex, leading him to make the following observation that we found amusing: “Mommy’s bad words are don’t and can’t.” When he knew he’d been unable to persuade me, he’d repeat my words in a defeated tone, “I know, I know, ‘that’s too bad, Alex!’” Then he’d walk away, muttering, “She never changes her mind.” Recently, we asked him if he liked being an only child. He affirmed that he was happy to be the only child, but we questioned him in a different way, trying to see if he missed not having a brother or sister. He looked at us as though we were crazy and candidly said, “Mommy’s too OLD!” I guess he mistakenly thought we were considering adding to the family and wanted to make sure that wasn’t going to happen.

Even when he was little, Alex understood irony and could use his limited language to make jokes. For instance, he liked to be asked math problems, but he’d deliberately give the wrong answer, typically adding one to the correct answer. To illustrate, he’d tell us that the answer to two plus two was five. We could watch his eyes mischievously dart as he thought of the right answer, then add one to make it wrong, say the incorrect answer with a grin on his face, and then giggle as he watched our response. As we’d tell him to try again, he’d giggle even harder and say the wrong answer again. This was a fun game for him, and we liked watching him get a kick out of teasing us. Similarly he’d subtract ten years from dates, such as saying that he was born in 1981 instead of 1991. Of course, he knew the right date, but he liked to kid us by saying the incorrect one. When he was older, he thought it was funny to say ridiculous things just to get a response. Every time we drove past the small lake a few blocks from our home, he thought it was hysterical to say, “Just drive into the lake!” We’d hear him guffawing in the back seat, tickled by his own joke. A few weeks ago, he was pleased that he was able to make us genuinely laugh at one of his comments. Ed asked him why I don’t like Bob Dylan, who is one of Ed’s favorite singers. Alex grinned and said, “Because he sings like this…” then he launched into a decent imitation of Dylan’s incoherent warbling [my interpretation, not Ed’s], making both of us laugh out loud, which made Alex laugh, as well. If, indeed, “Laughter is the best medicine,” Alex’s entertaining sense of humor should keep us not only happy but also healthy.

“Then were our mouths filled with laughter, and our tongues with singing. Then they said among the nations, the Lord has done great things for them.” Psalm 126:2

Careers

In watching Kids’ Week on Jeopardy with Alex last week, I noticed something interesting about these bright upper-elementary students: their proposed career choices. They listed rather impressive possible jobs, such as marine biologist, cardiologist, anthropologist, and even President of the United States. While Alex hasn’t quite decided what career he wants to pursue, and we haven’t determined what God has planned for him, he has offered some interesting choices through the years. One scientific career Alex has discussed is meteorology. His interest in weather makes this a natural choice. I always find it interesting that he says that he wants to be “a meteorologist” and not a weatherman; he takes the science seriously. He is probably one of the few kids who knows and understands the Fujita and Saffir-Simpson Scales for tornadoes and hurricanes. His greatest fascination with weather, though, is in record temperatures. He enjoys looking up these extremes online, including recently finding The Weather Channel videos reporting record highs and lows posted on You Tube. I can almost picture him standing out in the elements with The Weather Channel meteorologist Jim Cantore, reporting some extreme weather condition, but then I remember how much lightning scares him and think he’d more likely be working safely indoors with severe weather expert Dr. Greg Forbes instead.

When Alex was seven years old, he wanted to be an astronomer. He studied the planets, stars, and constellations, reading all the books he could find about them. Also, he loved astronomer Jack Horkheimer’s nightly five-minute Star Gazer show so much that Ed would wake him to see it shortly before midnight, and then Alex would happily return to sleep. One evening, we took him to see Valparaiso University’s telescope and observatory, and one would have thought we had taken him to Disney World because he was so excited. First, college students explained the Summer Triangle and allowed people to view it through the telescope. The brief description made such an impression on him that he still can list the three stars that comprise the triangle: Altair, Deneb, and Vega. The second part of the presentation took place in the observatory, where a student detailed the features of each planet. He described the eight planets and then asked if there were any questions. In the dark room, I suddenly heard a child’s voice beside me blurt out, “How about Pluto?” I was surprised that Alex spoke up, but I was pleased that he had been paying attention and wanted to know more. The student graciously explained how Pluto didn’t fit with the other planets, told Alex his question was a good one, and satisfied a curious possible future astronomer.

Probably his most consistent career choice through the years has been mathematician. Math has always been Alex’s favorite and his strongest subject. He can easily do math problems in his head accurately, often more quickly than most people can do them on a calculator. An idol of his is Professor Yasumasa Kanada, a mathematician at the University of Tokyo, who has set world records for calculating digits of pi using supercomputers. One of Alex’s proud accomplishments is that he has memorized nearly 1500 digits of pi. Once when he was twelve years old, I came home from school to find one of his legs covered in black. As I looked closer, I could see that it was ink, and upon even further inspection, I could make out numbers. Curious as to what he’d been doing (and also wondering where his father was when he was doing this), I asked him what was on his leg. He proudly replied, “The first 100 digits of pi.” I then asked him why he’d written them on himself, and he nonchalantly responded, “Because we ran out of paper.” I had to hand it to him: the boy was smart and resourceful. This incident reminded me of John Nash in the movie A Beautiful Mind writing formulas and equations on windows with a grease pencil; perhaps someday Alex will figure out something as equally brilliant as Nash’s game theory that won him the Nobel Prize. In the meantime, we try to encourage his interests and enthusiasm as we wait for God to lead him to his destiny. Also, we try to keep plenty of paper on hand, as well.

“For I know the plans I have for you, “declares the Lord. “Plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Hurricane Alex

Alex and Ed share a fascination for weather. While I simply want to know whether I need a coat or an umbrella, they carefully study the weather. They follow forecasts, fronts, and trends online and on television, as well as on their electronic weather stations that record temperature, relative humidity, and barometric pressure. With rain gauges, they measure precipitation. Not surprisingly, they were eager last week to follow the track of the first Atlantic hurricane of the season, Hurricane Alex. Of course, Alex was pleased to share his name with this first hurricane, even though the storms didn’t last long. This summer’s Hurricane Alex reminded me of a summer a few years ago when we had our own Hurricane Alex.

From all the reading I had done on autism, I thought that once we had Alex talking, potty trained, and gaining some social skills, our lives would be relatively simple. We never anticipated the effects of hormonal changes that came in Alex’s early teen years, bringing disruption and destruction, much like a hurricane. As Alex went through puberty, he suddenly changed from an easy-going and gentle child to an often angry and aggressive teenager. With little warning, he would fly into rages, where he would hurl any nearby objects, scream, and physically attack us. These were terrifying and upsetting times, as it would take both of us to restrain him so that he would not harm himself or us. He would sometimes have a crazed look in his eyes and would even foam at the mouth because he was overwrought. Making the tantrums even more difficult, he was physically bigger and stronger than I was, and adrenaline rushes made him even harder to handle. Nothing we said would console him, and he would end these tantrums in tears, asking if he’d done anything bad. It was heartbreaking to see him so upset. Immediately, I began praying for guidance and researching how to help him. I finally figured out that he was probably having anxiety attacks that made his adrenaline kick into the “fight” mode of the typical “fight or flight” associated with panic. Having had anxiety attacks throughout my life (although mine take the form of “flight” and wanting to leave a situation), I understood the physical effects triggered by stress, emotions, and hormones. Next, we had to figure out a way to level his brain chemistry to ease the anxiety and prevent the outbursts.

The first OTC supplement we added after getting his doctor’s approval was an amino acid, gamma-aminobutyric acid, also known as GABA, which is often used by women for PMS. GABA calms the nerves much like the drug Valium, yet it does not carry the risk of causing addiction. Acting as a neurotransmitter, GABA helps maintain proper brain function by preventing nerve cells from overfiring during anxiety and stress. I ordered GABA with inositol and niacinamide (which make the GABA more effective against stress) online from Kirkman Labs, and giving him this natural sedative daily has made Alex much less anxious. In addition, Alex’s doctor gave us a prescription for low-dose Lorazepam, a generic of the drug Ativan, which is used to treat anxiety disorders. We only give him Lorazepam when he is extremely agitated, and it calms him very quickly. During this time, I discovered an article Dr. William Shaw of The Great Plains Laboratory had written regarding how lack of lithium is common in autism and can affect behavior. While lithium is naturally present in drinking water, people who drink filtered water do not get enough in their systems. After Alex had been chelated of toxic metals, we were careful to let him drink only filtered water, and our home water has a reverse-osmosis filter system for purity. Dr. Shaw’s article recommended giving very low doses of OTC lithium drops daily to supplement that need. Alex’s doctor agreed that the dose was harmless, and I ordered the lithium drops online from New Beginnings Nutritionals. We noticed a vast improvement in Alex’s mood swings: the extreme behaviors of silliness, anger, and sadness leveled rapidly. Alex’s sweet personality returned, and the tantrums lessened greatly in severity and frequency. While this period of Alex’s development was a very trying time, we feel blessed that we were able to help him balance his brain chemistry, ease his anxiety, and make life much better for all of us.

“He calmed the storm to a whisper and stilled the waves. What a blessing was that stillness as He brought them safely into harbor!” Psalm 107:29-30

Home Schooling

We didn’t originally plan to home school Alex, but choosing to teach him ourselves has been one of the best decisions we have made. Having work schedules that accommodate our need to be home with him has been a blessing. Ed teaches college English classes in the afternoon and evening, and I teach three middle school English classes in the morning. This allows Ed to be home with him in the mornings, and I have my afternoons free to spend with Alex. One or both of us is always available to him. As teachers who have varied interests outside of our teaching field, we felt comfortable in the role of home school parents. In addition, circumstances pushed us into this position, making us see that we needed to supervise Alex’s education ourselves.

When we had Alex evaluated for autism, we had this done through our county school system’s special education department. After they determined that he had autism, they offered him special education preschool classes. At that time, we felt this was a good setting for Alex, and he really enjoyed going to preschool the first several months. Later, some classroom practices came to light that we felt were wrong. For example, his teacher decided to punish Alex if he did not use the toilet during the scheduled times. She would deny him playground or gym time with his classmates, and/or she would not allow him to have snacks during snack time. Apparently, she felt these were strong motivators for him, but we sent him to preschool to learn social skills, and singling him out for this punishment inhibited his ability to interact with his peers. Another time, she told me that she had sent him to the hall for making silly noises, which I felt was an appropriate consequence for his actions. However, she also informed me that she made him hold a sign that said, “IGNORE ME!” Since Alex could read the sign, this struck me as demeaning, akin to a dunce hat students of old wore. After that, I decided to observe his class and discovered that she was restraining him in a seat belt chair (which is intended to be used only for children who physically cannot support their bodies) during the entire class, again creating a form of isolation from his classmates. Since Alex was not a threat to himself or anyone else, I questioned the need for restraint. She told me that it kept him from wandering around the classroom. Knowing that Alex was very compliant, I suggested that rather than putting him in the seat belt chair, she could tell him to sit down and teach him discipline that way. While she agreed that he would be cooperative, she told me, “It’s just easier to use the seat belt chair.” That was the final straw. We sensed that teaching Alex was not the priority, controlling him—a very docile and obedient child—was her emphasis instead. Knowing that we needed to advocate for our child, we immediately pulled him out of school and began home schooling him.

In Indiana, home schooling requirements are rather straightforward. After registering with the Indiana State Department of Education as a private school, home school parents must agree to teach their children 180 days per year, keep a calendar record of the days of instruction, and teach a curriculum comparable to that which students receive in the public schools. Finding curricular materials has never been a problem, as we have easily found books from Barnes and Noble, Christian Books, and the library. Being able to teach Alex one-on-one has enabled us to use his strengths to address his weak areas, and he is an ideal student, eager to learn. Through this process, he has mastered one of the most important lessons: how to find information he wants to know. He is a whiz at researching topics of interest online and in books, a good skill to use throughout life. What pleases us most, however, about our decision to home school Alex is that not only has he thrived in this setting, but he has never lost his self-confidence or his love of learning, unlike many students. His desire to learn will help him reach his full potential. As writer Robert Louis Stevenson once noted, “To be what we are, and to become what we are capable of becoming, is the only end of life.” For Alex, home schooling has been a strong means toward that end.

“Those who listen to instruction will prosper; those who trust the Lord will be joyful.” Proverbs 16:20

Holidays

According to the Autism Society of America’s website, people with autism often exhibit “insistence on sameness; resistance to change.” Fortunately, Alex does not typically display this need for routine and is usually quite flexible. He enjoys spontaneity; for example, he’s ready and eager to go anywhere on a moment’s notice, even if he’s watching a favorite tv show, engaged in a good book, or busily working on his computer. He loves going places. Perhaps the best illustration of his adaptability is his fondness for holidays. If asked what he likes about holidays, Alex describes them as “special” and/or “rare,” both of which he sees as positive attributes. This reminds me of a line from The Little Prince, one of my favorite books, in which the title character asks what rites are and is told, “They are what make one day different from other days, one hour different from other hours.” For Alex, the rites of holidays and other special events create variety that he not only enjoys but also eagerly anticipates as he awaits their arrival, counting down the days on his calendar.

Like many kids, Alex’s favorite holiday is Christmas. When I asked him what he likes about Christmas, he immediately answered, “Jesus Christ.” This was the same reason he gave for liking Easter, which he informed me is his second favorite holiday. While I was pleased by the reason he gave, I was actually surprised that was his first response. When asked if there were any other reasons he preferred Christmas, he did give a more predictable answer: “Presents.” I always find it interesting that Alex doesn’t just take pleasure in getting presents for himself, but he also genuinely enjoys watching other people receive and open presents, even gifts he thinks are “boring,” like clothing. After Christmas and Easter, Alex’s third favorite holiday is Fourth of July, one that arrives without presents, but features fireworks instead.

In theory, Fourth of July should be difficult for Alex with the unpredictable and loud fireworks. Even when he was younger and had sound sensitivities, he still enjoyed fireworks. He would cover his ears at times, but was never upset by the sound of explosions. After we did auditory integration training with the EASe disc, a home-based program in which he listened to instrumental music played at various frequencies to lessen his sound sensitivity, Alex no longer covered his ears when he heard loud noises. When he was younger, we took him to our city fireworks display, which was then held at the county fairgrounds, and he looked forward to this annual event. In recent years, a neighbor puts on a very impressive fireworks display that we can watch from the comfort of our screened porch in our backyard. To be truthful, what seems to please Alex most is the sheer number of fireworks, as we hear him quietly counting each explosion with a smile on his face. He will then compare each year to previous years in terms of the number of fireworks. In addition, Ed lights smaller, legal fireworks for Alex to enjoy (and count), and Alex likes to set off Snap and Pops, small bits of tissue paper that crackle when he throws them down on the sidewalk. Despite the unpredictability of fireworks, he likes the predictable routine that we’ve established; he knows what activities usually surround the holiday. Ed has commented that he thinks what Alex likes best about holidays and special annual events is the ritual of the activities that surround them. While these special and rare days are different from other days, they still have a routine that is familiar and comforting to Alex, and that makes holidays memorable for him.

“This is the day which the Lord has brought about; we will rejoice and be glad in it. “ Psalm 118:24

Support

If you want to find out who your real friends are, raise a child with autism. I’ve heard it said that when a child is diagnosed with autism, people don’t send cards, flowers, or casseroles. In fact, I suspect most people aren’t certain how to offer comfort and support, yet those who reach out to families touched by autism are truly a blessing. Along with our family members whose prayers, concern, and understanding have made the path easier, others have stepped up and helped in many ways.

Shortly after we discovered Alex did, indeed, have autism, I needed to talk with other parents who were in the same boat we were. Fortunately, the Internet makes the world much smaller, and I was able to find support groups online for parents of children with autism. Being able to compare notes, share concerns, and learn tips from other moms whose children also had autism was very helpful. Along the way, I found kindred spirits with whom I could empathize; I still keep in touch with some of these special moms through Facebook and e-mail. Our sons have grown up together, and our common experience bonds us. Along with the autism moms I met on the Internet groups, two of my autism mom friends were introduced to me by mutual friends who thought we could benefit by sharing ideas, and they were absolutely right. Knowing that these other moms really understand my life because their lives are quite similar has been comforting through the years.

An amazing source of support for me has been the friendship of my co-workers who have taken a genuine interest in Alex and shown compassion to me. For example, my friend the German teacher knew Alex was fascinated by Las Vegas and slot machines, so he brought back from his trip to Las Vegas casino coin cups used for playing slot machines and tourist magazines (which his wife judiciously censored by removing the ads for escort services). Knowing that Alex loves math, my friend the math teacher sent home old math textbooks for Alex to keep. My friend the secretary knew Alex was interested in computers, so whenever I brought him to school, she would let him use her computer. Others would pass along autism research they’d seen or heard. When I was overwhelmed during the early teen years, my friend the guidance counselor listened sympathetically and always made me feel better after we talked. My friend the social studies teacher regularly asks me how Alex is doing and always reminds me to tell Alex that he said, “Hi.” He was also thoughtful enough to loan his Play Station game system for Alex to use when Alex’s beloved computer was being repaired. My friend the science teacher, who has a child with similar issues, and I compare notes often. We frequently start our conversations commiserating, but we nearly always end them laughing, finding the humor in situations that probably no one else would understand, but is welcome relief to us. The mother of an adult special needs child, my friend the media center secretary, has been a tremendous support through the years. Handling her situation with admirable grace, optimism, and humor, she has been a gift from God—a trusted confidant and mentor to me as I navigated uncertain waters. These are but a few examples of the wonderful people I am fortunate to have as colleagues. Their understanding and kindness mean much more than cards, flowers, or casseroles. Their ongoing expressions of caring for Alex and for me have offered tremendous support, probably more than they even know, and I am grateful to have such devoted friends.

“Since God chose you to be the holy people He loves, you must clothe yourselves with tenderhearted mercy, kindness, humility, gentleness, and patience.” Colossians 3:12