Fears Relieved

One of my favorite lines from the old hymn “Amazing Grace” is in the second verse: “And grace my fears relieved.” So many times through the years I have worried about Alex, only to have my fears relieved. For example, when Alex was a baby, I noticed that he had an indentation in his breastbone that I pointed out to his pediatrician. The doctor diagnosed this condition as pectus excavatum, or funnel chest, and told us that the dip in Alex’s chest was probably more of a cosmetic issue than a medical one. However, he went on to tell us that if Alex developed breathing problems from having the breastbone pressing on his lungs and constricting them, he would need surgery. Apparently this surgery is “rather grueling,” as the pediatrician explained, because it involves restructuring of the breastbone. As Alex grew, I would watch his chest rise and fall and listen for his breathing, praying that he would never need this surgery that scared me so. Thankfully, as Alex grew, the dip in his chest became much less noticeable, and his breathing was never compromised by the irregularity in his breastbone, which meant that my prayers were answered, and my fears were, indeed, relieved.

As Alex became older, I had new worries, primarily concerns about how he would react to situations that might involve pain for him. While all parents want to spare their children pain, with Alex we had to worry that he also might have a meltdown if he were hurt. The first time he needed a blood test, I was concerned that he would be upset by the needle, the pain, and the blood. However, Alex found the blood draw fascinating and never complained a bit. As the nurse commented, he handled the blood test better than many grown men she’d seen have blood tests. When Alex had his annual blood test a few months ago, a new nurse suggested that he look away, and I assured her that he preferred to watch the process. She was amazed by how unfazed he was by the test, but having seen him calmly sit through many blood tests, Ed and I were not surprised, just pleased that he was enthusiastic instead of upset. Similarly, I was concerned when Alex began losing his baby teeth, he would be unnerved about teeth falling out of his mouth and the blood that followed. I should have known that since money was involved—in the form of the Tooth Fairy’s reward—Alex thought this was fun. Later, as he lost his baby teeth and gained all of his permanent teeth, I fretted about what might happen when his wisdom teeth erupted. Having had all of my wisdom teeth removed by the age of sixteen due to crowding issues, I was concerned that Alex would need to have his wisdom teeth extracted, as well. His dentist told me that Alex could have them removed under general anesthesia, should that be necessary. Like the chest surgery, however, I prayed that Alex could avoid this ordeal. His dentist went on to reassure me, “We’re not going to worry about that, Mom, unless they’re a problem. Let’s assume that they’re not going to be a problem.” He was absolutely right; fortunately, Alex’s wisdom teeth have come in fine and have not required surgery to remove them.

One of my greatest fears concerning Alex was one I didn’t share with anyone for a long time. When I suspected something was amiss because of his language and toileting delays, I was terrified that social services would come and take him away from us. I thought that his failure to make progress might be attributed to negligence on my part, even though I knew I was moving heaven and earth to try and help him. I had read articles about children with developmental delays who were taken from their homes, and then the parents were found innocent when the error was realized regarding the real reason for the problems. Once I realized that my fear was unfounded, I was able to pursue therapies for Alex without a frantic feeling. Now that Alex is a young adult, I find myself again fighting fears about what the future will bring. While I rely on my faith, sometimes those nagging fears sneak up on me, and I have to remember all the prayers God has answered and know that He will protect Alex. As I fight my fears, the third verse of “Amazing Grace” offers me comfort about Alex’s future: “Through many dangers, toils, and snares, I have already come; ‘tis grace that brought me safe thus far, and grace will lead me home.”

“So don’t be anxious about tomorrow. God will take care of your tomorrow, too. Live one day at a time.” Matthew 6:34

Red Flags

Although Alex was not officially diagnosed until shortly after he turned four years old, we had been suspicious for about a year earlier that he had autism. When we took him for his annual physical exam at age three, we shared our concerns about his language and toilet training delays with his pediatrician, who assured us that Alex was very smart and that his delays were solely because he was a boy. Indeed, he did not meet any of the criteria for early diagnosis of autism: not smiling by age six months; not babbling, pointing, or using other gestures by age twelve months; not using single words by sixteen months, not using two-word phrases by twenty-four months; or having a regression in development with any loss of language or social skills. Alex could do all of these skills at the prescribed times and never had a regression, just a plateau where he didn’t seem to make much progress. While he couldn’t do some of these skills well, he could, nonetheless, do them. When we took him to the pediatrician a year later with the same concerns that Alex was not potty trained, nor could he speak well, his doctor finally understood our worries. He asked me what I thought the problem was, and without hesitation, I told him, “I think it’s autism.” That began our journey of evaluations that proved my maternal instinct correct.

Because Alex is our first and only child, we didn’t realize how different he was from other children. In addition, he didn’t have playmates his age, so we couldn’t compare him to his peers who were developing typically. The few times that he was around children his age, he interacted appropriately, even though he tended to be more reserved than others, which we attributed to shyness. Moreover, we thought that some of his unusual interests, such as looking at books without pictures and watching the Weather Channel, were the result of spending so much time with adults because he was with Ed and/or me nearly every waking minute of the day. Even some aspects which we thought were positive were perhaps early signs of autism. For example, Alex’s head measurements every time he went to the pediatrician were in the 90th percentiles. His head never seemed that large to us, and now that he’s nearly fully grown, his head is average in size. When he was little, his doctor used to tell us jokingly that Alex’s head was big because he had more brains than other kids his age did. Several years later, I would read that children with autism often have larger than normal head size. In addition, he has always been remarkably healthy, which we have considered a blessing. Other than projectile vomiting when he was a baby, which was likely an allergic reaction to milk before we knew he didn’t tolerate milk proteins well, he was never sick. Like his seemingly very healthy mother, Alex likely has autoimmune issues, another concern related to autism. Before Alex’s diagnosis of autism, which led me on a quest to research the condition, I had no idea how much autism impacted physical as well as behavioral aspects of development and didn’t recognize some of these details as related to the disorder.

In watching the videos of Alex’s early years objectively, we can now see some of the early red flags warning that he had autism. His sensory defensiveness was evident as he was bothered by loud noises, covering his ears and even crying when startled by sounds. When drinking from his baby bottle, he would tilt his head back and stare into the light bulb in the lamp located next to the chair where we fed him. He also had an uncertainty in his walk, which was probably related to his balance and sensory problems, tilting his head and walking on his toes, a common characteristic of children with autism. While he would notice objects and try to call our attention to them, he would do this by touching things with his hand flattened instead of pointing with one finger, or he would take our hands and have us touch the object. As a baby he would amuse himself by waving his hands in the air; this later took the form of stereotypical autism hand flapping, where he would get excited and look like a baby bird trying to take flight. As a toddler, he was difficult to carry because he wouldn’t wrap his legs around the person carrying him, as most children do. He would wrap his arms around our necks to help with our carrying him, but we had to hold his legs because transporting him was like lugging a sack of potatoes. Perhaps one of the more unusual early behaviors we overlooked as problematic was his need to line up people when they came to visit. He would take each person by the hand, leading everyone into the kitchen, and one by one, put people in a line, as if he were a photographer lining up subjects to take their picture. We thought this was amusing, and we didn’t stop to realize that lining up things is often associated with autism. I suspect that he needed to have everyone in one place in an orderly fashion so that he could keep track of them at least momentarily. Although early intervention is helpful for children with developmental delays, I often think that not knowing Alex had autism the first few years was a blessing because we enjoyed him, quirky behavior and all, and we enjoyed those early innocent days, not worried about what we needed to do. We still savor those precious times and are thankful that once again we spend more time enjoying him and less time fretting over him.

“Tell us, when will all this happen? What sign will show us that these things are about to be fulfilled?” Mark 13:4

Rediscovery

This past week, Alex seems to be in a nostalgic mood, as he has been busily rediscovering books, toys, software, and handheld electronic gadgets that he hasn’t used in months, or even years. His bedroom, which he has been keeping neat for quite a while, currently looks as though a tornado has torn through it because he’s been sorting through books on his bookshelves, toys in his toy box, and electronic games and gadgets in a basket. In our home office, he has software manuals and CD-ROMs lying on the desk. His desktop computer, which held less charm for him once he got his new laptop this summer, has regained favor as he has been playing old games on it. A few years ago, Alex developed a keen interest in simulation computer games and acquired a nice collection of software that allowed him to plan, build, and run various business ventures. After a while, though, he found Google, Wikipedia, and You Tube more interesting than his computer games. However, this week, he has resumed playing Roller Coaster Tycoon, Mall Tycoon, Restaurant Empire, and Casino Empire. The enthusiasm he formerly held for building roller coasters, malls, restaurants, and casinos has returned, and he gains satisfaction as he watches his plans develop through the sequence of the computer games.

Scattered on Alex’s bedroom floor are books that he hasn’t read in months and toys he hasn’t played with in ages. Among the books he’s studying again are two coin collection books of pennies, the NASCAR Road Atlas, and Mrs. Byrne’s Dictionary of Unusual, Obscure, and Preposterous Words, a gift from a friend who thought I’d appreciate a book whose title contained the name my students call me. I’m not certain why Alex has resumed his fascination with coins, maps, and odd words, but I’m pleased that he knows where to find books that he enjoys. In addition, he’s been pulling out and playing all of his electronic interactive games: U.S. Presidents, Solar System, U.S.A. Map, and World Map. While I suspect that Alex probably knows all the answers to the questions these interactive games pose, maybe playing them again gives him confidence that he has learned the lessons they’ve taught him over the years. He has also been playing with two car-related toys that he’s had since he was little, the Hot Wheels Racing Steering Wheel and the Hot Wheels Auto Tech Service Center, both of which are speaking toys. Since most boys his age are out driving cars, I have to admit that I’m relieved that he’s just dealing with toy cars. Certainly with his motor delays, the Hot Wheels steering wheel is much safer for him to operate than a real steering wheel.

Besides software, books, and toys, Alex has also been digging through his handheld electronic games and gadgets that he has basically ignored for months. He’s been bringing old games to me to put new batteries in them, and in doing his mental inventory, he has realized that some gadgets he previously had have been lost or broken over the years. As I mentioned in a previous blog entry, “Progress Achieved,” Alex had a small tape recorder that he would use after provoking us so that he could record our angry comments. He particularly liked replaying Ed’s earnest request “to stop torturing us,” and my middle school teacher voice insisting that Alex “sit down and be quiet because I’ve had enough!” Because he was driving us crazy with that thing, we hid it where he wouldn’t find it. Apparently, we found a really great hiding place because we can no longer find it, either. This week, Alex located a similar tape recording toy online and decided to purchase it using a gift card his uncle and aunt had given him. If he resumes using that gadget for evil instead of good, we will be mailing that Yadda Yadda Yadda, as it’s called, to Uncle John in New Jersey to do with as he pleases. Another gadget Alex decided to replace this week was his Talking Road Whiz handheld device that tells distances between cities and the locations of businesses along major highways—a simpler, less expensive version of GPS. As I recall, angry adolescent Alex threw the original Road Whiz in a fit of temper, which explains why none of the buttons work anymore, despite new batteries. We found the Road Whiz online, and he put some of his gift money toward a new one. Now he keeps using online tracking to see when these new toys will arrive. The other day, he informed me that he also wants a PDA and has been pricing them on the Internet. Although he wanted one several years ago, we did not get him the Palm Pilot he wanted, as we didn’t think he was responsible enough to take care of one of these expensive electronic aids. Now that he does generally do a good job of taking care of his things and has his own money saved to buy one, he’ll probably add another gadget to his collection. Considering that his father now travels nearly everywhere with a Kindle and an I-Pod Touch, Alex seems to be following in his footsteps with all his electronic accouterments. Despite the fun and excitement that come with new possessions, Alex still likes the familiarity of the old things and gains pleasure rediscovering them.

“Thus says the Lord: ‘Stand by the roads and look; and ask for the eternal paths, where the good, old way is; then walk in it, and you will find rest for your souls.’” Jeremiah 6:16

Self-Image

Like the mythical character Narcissus, who fell in love with his own reflection, Alex enjoys looking at his reflected image—in mirrors, photographs, and videos. Unlike Narcissus, however, Alex doesn’t really care about his appearance. I’m convinced that his interest in seeing his image lies in his search for himself. Several months ago, he found a hand mirror and amused himself by looking at the reflection of his face from different angles and with various facial expressions. Unfortunately, he accidentally dropped that mirror on the bathroom tile floor, where it shattered into little pieces. While I’m not superstitious about the seven years of bad luck associated with a broken mirror, I was concerned that the next time a mirror dropped, he could get cut by the broken shards. Therefore, I went in search of a baby mirror that he could carry around safely to satisfy his need to look at himself, and I found one made by Sassy that was not only safe but also reflected a more distinct image than most toy mirrors do. Alex was delighted with this purchase, carrying it around the house and even sleeping with his new mirror.

Besides looking at his reflection in mirrors, Alex also enjoys watching himself in old videotapes and looking at pictures of himself. Perhaps because we have told him that he is the one depicted in photos and videos, Alex always recognizes himself at any age and seems to find the younger version of himself amusing, laughing and smiling all the while he sees himself in the photos and videotapes. Other people are a bit problematic for him, however, since he doesn’t always recognize people’s faces. For example, he has trouble distinguishing my sister from me in photos, despite some obvious differences in our appearance. Also, whenever he sees an older man wearing glasses and a plaid shirt, he’ll often ask us, “Is that Grandpa?” He tends to make generalizations about others’ appearance and not see the small details. This past summer when we were out in public, Alex would watch small children, and if he saw little boys who resembled him when he was little, he would ask, “Is that Alex?” Through various explanations, we were able to convince him that he was the only one like him, and he seemed to grasp that other boys were not Alex. Also, by watching the videotapes of his childhood and noticing the dates displayed on the bottom of the screen, he was able to reconcile the idea of his maturation over time. He was the same boy, just older and bigger now.

Like many children with autism, Alex has had a great deal of trouble with the pronouns you and I or me. I’ve never been certain as to whether this difficulty is a language issue or a perception issue about who he is and his point of view. For example, if I asked him if he wanted juice, he would reply, “You want juice.” Even more confusing would be situations where he would approach us and say something like, “You made a mistake.” Then our conversation would be reminiscent of Abbott and Costello’s comedy routine “Who’s on First?” that Raymond Babbitt repeated throughout the movie Rain Man. We’d ask Alex for clarification by saying, “Who? Alex or Mommy or Daddy?” The majority of the time “you” meant Alex, but we had to be sure. This led him to another stage we called the “Bob Dole Syndrome” after the U.S. senator who frequently referred to himself in third person as “Bob Dole” when he was running for President. To make certain he was understood, for instance, Alex would tell us, “Alex wants cookies.” While this method was more efficient for making himself clear, his speech sounded rather stilted by using his name instead of “I” or “me.” Interestingly, he could easily use “I” in situations where he felt strong emotions, such as, “I hate popcorn!” or “I like shrimp!” Perhaps when he expresses his feelings, Alex comes closest to knowing who he is, and his language reflects this clarity. As he does with most things in life, Alex needs time to observe, listen, and study so that he can understand the world and his place in it. By figuring out who he is through his reflected images and his language, Alex gains confidence in himself, allowing him to interact more easily with others and to overcome the social skill issues autism presents.

“Praise the Lord, I tell myself, and never forget the good things He does for me.” Psalm 103:2

Supplements

Recently, Alex’s doctor suggested that we add Omega 3 fish oil to his nutritional supplements as a possible way to help his tendency toward dry skin and dandruff. After about a week of adding fish oil, we noticed subtle changes in his behavior, primarily a sense of discontent and some anxiety. Thinking that the timing between the new supplement and his mood changes was not likely coincidental, we took him off the fish oil, and his easy-going good nature returned almost immediately. Through the years we have learned that Alex’s metabolism requires a delicate balance of nutrients that impact his health and behavior tremendously. Under his doctor’s supervision, Alex has tried a variety of supplements, but we always introduce new things one at a time so that we can monitor his reaction and have a good sense of what is causing any changes—positive or negative. Some supplements that have a good reputation for helping children with autism have made Alex extremely hyperactive or agitated, so these were not a good choice for him. A couple of years ago, his doctor recommended that we make protein shakes for him, and after two days of protein shakes and an insomniac Alex, we decided to throw that supplement in the garbage. On the other hand, some supplements have been very helpful and critical to maintaining Alex’s good health.

While Alex has taken as many as four dozen supplement pills a day to address various needs he had at times in his development, he currently takes about twenty pills daily (some supplements in multiple pills), divided into doses after breakfast and before bedtime. The only daily prescription medication he takes is Fluoxetine, or generic Prozac, an SSRI medication to help his OCD. He started taking this around age eleven, and he has been on various doses over the years. Now he only takes ten milligrams per day, a very low dose, but one that seems to keep his obsessive-compulsive issues under control. For many years, he has taken a multivitamin and mineral supplement to balance his nutritional needs. We give him EveryDay Multi-Vitamin from Kirkman, a supplement that is especially developed for people with autism and is hypoallergenic for purity. Since Alex has food sensitivities to milk products, he takes a calcium-magnesium citramate supplement to make sure he has enough calcium in his system. His dairy-free diet also means that we have to give him a vegan form of probiotics to avoid ingesting any milk products. Over the years, Alex has had problems with yeast overgrowth, but the probiotic supplements, especially those with acidophilus, seem to keep his intestines in good working order. To address his environmental allergies, he takes generic over-the-counter Claritin. We had noticed that he acted particularly irritable during allergy seasons, and OTC allergy relief seemed to improve his mood. To make sure he is not bothered by allergens, we keep him on the medication year-round, and his doctor has approved this regimen, as she has with all of his supplements. To calm Alex’s anxiety, he takes GABA, a supplement we order from Kirkman that works much like valium but without side effects or the risk of addiction. Another calming over-the-counter supplement that has helped him tremendously is the addition of New Beginnings Nutritionals’ low-dose lithium drops, which help regulate his mood swings and keep him content. Before bedtime, a critical part of Alex’s routine is taking melatonin, a natural hormone that regulates sleep cycles and safely helps him sleep. Many children with autism lack the levels of melatonin in their bodies they should have, and Alex has definitely benefitted from taking melatonin so that he can sleep peacefully throughout the night without any negative side effects. Besides these daily pills, I give Alex a methyl vitamin B-12 injection prescribed by his doctor twice a week. These B-12 shots help heal Alex’s nervous system and detoxify heavy metals his body is unable to remove from his system, which has been an issue for him. Currently this combination seems to work well for Alex, and we are pleased with his behavior and his good health.

Fortunately, Alex is very cooperative about swallowing pills. When he was about five, I worked with him to help him learn how to swallow pills because I wanted to start him on supplements, and more were available in capsules or tablets than in liquid form. In addition, if Alex didn’t like how something tasted, he was likely to spit it out; hence, pills were the easier route to take with him. Having watched my mom give our family dog pills, I modified her technique slightly, putting the pill in Alex mouth, gently holding his mouth closed, and rubbing his neck to encourage swallowing. While he wasn’t pleased with this activity at first, he caught on to what I wanted him to do, and soon he could take the pills without my having to hold his mouth closed. Since then, he has always been very good about taking any medicines or supplements we have given him and seems to know that we are trying to help him. Part of my Sunday morning routine is counting out his supplement pills and placing them in pill containers marked with the days of the week. This helps Ed, who gives Alex his morning supplements on days that I’m at work, and it makes life simpler for both of us for the evening doses that we share supervising. To prepare for the week, I consult a list detailing the pills and their dosages as I go. In one of Ed’s poems from his book Tidal Air, “Late Vacation at the Cape,” he adeptly describes my task: “She separates the medicine as if she is a pharmacist, always counting out the tally, naming each as she distributes so none of them is ever forgotten.” In addition, we count the pills aloud—sometimes counting in foreign languages for variety—as we give them to Alex, who sees this regimen as a game and happily swallows each numbered pill. At the same time, I count our blessings that this daily routine and God’s grace are working toward healing Alex.

“O Lord my God, I cried out to you for help, and you restored my health.” Psalm 30:2

Progress Achieved

While cleaning house this past weekend, Ed and I remarked on another positive change we’ve noticed recently in Alex: he’s become fairly neat. Only a few months ago, he had the annoying habit of tearing up little pieces of toilet paper and strewing them throughout the house, requiring a need for frequent vacuuming. Apparently he has lost interest in doing that in the last few weeks because I only found two tiny pieces of toilet paper on the bathroom floor on Saturday. Overcoming this habit also explains why I don’t have to change the toilet paper rolls as frequently as I had been doing. As I mentioned in my blog entry “Stages,” Ed and I have commented that every annoying stage eventually disappears, only to be replaced by an equally annoying phase. The toilet paper tracked through the house had replaced the pieces of legal pad paper with Alex’s lists written upon them scattered in nearly every room. We solved that problem several months ago when we started buying composition notebooks for him to use for his sacred lists; not only does that prevent list loss but also limits list litter. Thankfully, as Alex has matured, he has outgrown various phases, some of which he couldn’t really help and others that seemed to be deliberately irksome on his part.

Because of his obsessive-compulsive tendencies, Alex has initiated routines throughout the years regarding eating. At times, he insisted upon eating three servings at every meal, so Ed and I would estimate how much he could eat and divide that amount into thirds for the required three servings. Later, he dropped the three servings plan and went to timed meal sessions instead. He would set a kitchen timer for ten minutes of eating—no more, no less. He would even leave one bite to eat during the last few seconds of that ten-minute session. Within the past few months, he seems to have a sense of how much he wants and needs to eat and simply eats that amount in whatever time it takes. He’s no longer tied to an obsessive routine about meals, which shows progress. Some of his past behaviors were also linked to his sensory issues. For example, wearing shoes and socks seemed to bother him, and he would only wear them when he was going someplace. As soon as he walked in the house, he would immediately take off his shoes and socks and go barefoot, no matter what the weather. In another recent change, he will now keep his shoes and socks on his feet long after he’s arrived home, apparently not bothered by the feel of them. Because of his sensitivity to sounds, he had previously been upset by thunderstorms and the sound of people coughing. Whenever it would storm in the night, he’d have a meltdown, yelling and pounding on his bedroom wall. Once we realized that he couldn’t hear thunder in our basement, we would take him to sleep in the basement bedroom while we slept on the pullout couch in the basement family room. Shortly after we arrived at this solution, Alex seemed to stop being upset by storms and now sleeps through them. Similarly, he is no longer bothered by people coughing, which is a relief. If Ed or I had a cough, we’d try to keep away from Alex because he’d run at us, grab our necks, and yell, “STOP COUGHING!!” Being sick is never fun, but being sick around Alex was especially stressful. Now, he never seems to be fazed by anyone coughing, which is another step of progress for him.

Besides the behaviors linked to his sensory and OCD issues, Alex also just did things to be ornery. Like many children, he would engage in various attention-seeking behaviors, such as whining, arguing, and interrupting conversations. Even though he doesn’t seem to have any sense of being self-conscious, he did seem to know how to do things that might embarrass us. We went through a stage where he thought it was hysterically funny to say stupid things when I was trying to order fast food in the drive-through lane. From the backseat, he’d yell into the speaker at McDonald’s: “I want pizza!” or his personal favorite, “I want INFINITY hamburgers!” Then he’d laugh and giggle as I’d try to give the real order. He also found it amusing to keep pressing buttons that would make loud noises, including the one to find the cordless phone or the one on our key chains that would set off our car horns. Needless to say, those were hidden from him for several months, as was a small tape recorder he would use after provoking us so that he could record our exasperated responses to play back for his own amusement. In addition, he used the television to annoy us, turning up the volume as loud as it would go, just to watch our aggravation. He would also overreact to quick changes of commercials, which he called “switchovers,” by tipping over lamps. After replacing various broken light bulbs, lampshades, and lamps, we were pleased when he got past that stage. During those particularly trying early teen years, he’d ask me every night before he went to bed if he’d done anything bad that day. I’d try to minimize his infractions and tell him I loved him so that he knew we’d forgiven him. Now, every night before he goes to bed, I thank God that I can’t think of any bad things Alex has done that day. The progress he’s achieved is such a blessing to all of us, and, as I now tell Alex every night, we’re so proud of the nice young man he’s become.

“The path of the righteous is like the first gleam of dawn shining even brighter till the full light of day.” Proverbs 4:18

Psychological Assessment

As we have watched Alex deep in thought over the years, Ed and I have often wondered what was going on in his mind. We were treated to a glimpse of his thought processes last week when we took him to a psychologist for testing. In the process of determining Alex’s eligibility for disability benefits, Social Security required that we take him to a psychologist to have his autism evaluated. This wasn’t a real surprise since Alex’s last complete evaluation was at age four when he was originally diagnosed with autism. Because we didn’t disagree with that diagnosis, we never pursued having him re-tested. A few years ago, we did take him to a psychiatrist, hoping to find help for his aggressive outbursts. However, this experience was basically a waste of two hundred dollars and an hour of time. Halfway into the appointment, after I had explained Alex and how autism affected him, the psychiatrist turned to me and said candidly, “Frankly, Mrs. Byrne, I think you know more about autism than I do.” Needless to say, we did not take him back to that doctor. In anticipation of last week’s appointment with the psychologist, I felt some trepidation, not knowing how this session would go, but Alex was excited, seeing this experience as a new adventure.

After asking Ed and me several questions about Alex’s strengths and weaknesses, the psychologist began to ask Alex questions to assess his abilities. Before the appointment, Ed and I had agreed that we would not come to Alex’s rescue by answering for him or prompting him to respond. We wanted him to represent himself accurately. However, we found it hard not to help him because, as Ed commented to me, we always want Alex to shine. Nonetheless, Alex was good natured and pleasant and answered the questions as well as he could. At times he had to twist his hair, or scratch his belly, or look around the room before he could give his response, but he was engaged in the process and was conscientious about doing the best he could. For one of the tests, the psychologist asked him to tell how two words were related. For example, he said apple and banana, to which Alex answered, “Fruits.” When asked about desk and chair, Alex knew to say, “Furniture,” and when given inch and mile, he said, “Measurements.” The next example was a bit trickier. He was asked how a poem and a statue are alike. I racked my brain, trying to think of a good answer, and found out later that Ed wasn’t certain what the definitive answer was, either. Alex thought carefully for a minute and then said, “Structures.” I thought that was a pretty good answer, and the psychologist seemed to find it interesting, too. Later, when given various real-life scenarios, such as what to do if you noticed a fire in a crowded theater or found a stamped and addressed envelope on the street, he was clueless as to how to respond. I’m not sure whether this is a language issue for him or a problem-solving weakness, but at least he didn’t become frustrated.

In another test, Alex was asked to explain the old saying, “Don’t cry over spilled milk.” Like many children with autism, Alex tends to be literal and doesn’t really understand figurative expressions. He began to laugh, though, and I suspect it was because he doesn’t drink milk due to his allergy to dairy products. Spilled milk doesn’t occur in his world. He then asked the doctor what the saying meant. The doctor explained it to Alex, turned to us, and commented, “He has a really great smile.” Next, he asked Alex to guess what time it was without looking at a clock, and Alex said that it was about 12:16. The exact time was 12:09, so his estimate was fairly accurate. To test Alex’s memory, he told him three objects to remember over time: a clock, an iron, and a table. Ed and I knew that he would remember the clock because he loves clocks. Several minutes later when asked what the three objects were, he remembered the clock and table but thought the third one was a desk, which had been mentioned in the association test. Since Alex doesn’t use an iron, and I rarely use one around him, I doubt it had significance for him. Later Ed told me that he couldn’t remember any of the objects, so Alex did better than he did. Another test of his memory involved repeating back strings of random numbers. Ed and I knew that he would do well at this activity because he has memorized hundreds of digits of pi, and we weren’t surprised that he completed this task easily. The doctor, however, seemed impressed that Alex not only could repeat the numbers in the correct order, but he could also recite them in reverse order. After we had also mentioned that Alex’s strengths lie in math, computers, and keyboarding, the psychologist suggested that with those skills, along with his memory and attention to detail, someday he might make a good computer systems analyst. We were pleased that he could see potential in Alex and not just the weaknesses. Moreover, we found this glimpse into Alex’s mind enlightening and uplifting because he did even better than we had expected. By stepping back and allowing him to be himself, Ed and I enjoyed watching Alex shine—all by himself, demonstrating the gifts God has given him.

“A man’s mind plans his way, but the Lord directs his steps and makes them sure.” Proverbs 16:9

Library

One of Alex’s favorite places to go besides Walmart and Panera Bread is our local public library. Considering how much he loves books and reading, his enjoyment of trips to the library is not surprising. When he was younger, I took him to choose books probably two or three times a month. However, for several years, I couldn’t take him to the library because his unpredictable adolescent behavior worried me that he might become noisy and disruptive. Meltdowns from children with autism are never pretty, but I knew that if he threw a fit in the middle of a quiet library, all eyes would be upon us. I wasn’t brave enough to risk that kind of negative attention for either of us. Recently, his vastly improved behavior has earned him regular trips to the library again, and he and I have established a routine where we go every other Saturday morning. While his tastes in reading material have changed over the years, his enthusiasm about going to pick out books from a large collection remains strong.

As a little boy, Alex spent most of his time in the children’s section of the library, other than the time he spent patiently waiting for me to select books from the adult section. The only problem about the children’s section of our library is that it is located on the second floor. Since Alex was afraid to walk down the stairs at that time, I’d have to carry him down in my arms. As he got bigger and heavier, this became a challenge because we were also carrying a stack of books he’d chosen. Of course, we could have taken the elevator, but my fear of elevators made me more willing to carry Alex and his books down the stairs without complaint. While most children like picture books and story books, Alex preferred books about letters and numbers. I think we read just about every alphabet book in the library’s collection. In addition, he loved Jane Belk Moncure’s My First Steps to Reading Series; each book focuses specifically on one letter of the alphabet, such as My “a” Book, and lists several words that begin with that letter. These books complemented his speech therapy nicely because he would often choose the letter that his speech therapist had assigned us to work on for those weeks. He read all the books in the series, and even read some of his favorites more than once. Another series he really liked was the MathStart Series that includes math problems in the stories, which appealed to his love of numbers and math. He also discovered a series of foreign language picture dictionaries written for children, the Just Look and Learn Picture Dictionaries, and he enjoyed learning some Spanish, German, French, and Italian words from these books. Besides his interest in books about letters, numbers, and foreign languages, Alex also liked looking through children’s cookbooks, especially when he was a big fan of the Food Network.

One of Alex’s strengths lies in his ability to research his interests. He mastered the computerized card catalog early, and I remember vividly holding him up so that he could reach the keyboard to type in his search queries. Now he no longer needs me to boost him to reach the computer at the library, but he often prefers to investigate possible book choices from home, using the online card catalog instead. While I sometimes make suggestions about books I think he would like, he also comes up with ideas of his own about what he’d like to read. His favorite library books seem to be medical in nature; he has read about child development and was especially engaged in a couple of books he read about the brain and nervous system. In addition, he has checked out books about recreational activities, such as NASCAR, gambling, and the board game Monopoly. He was also pleased to find a book about the different numbers famous athletes have worn on their sport jerseys; this combined his interest in sports as well as his love of numbers. Because of his interest in finance and the stock market, he has additionally read books about Wall Street and banking. Currently, he has checked out another library book about the brain and nervous system that he has been studying carefully, along with the Encyclopedia of Antique American Clocks, which is fitting since he likes clocks and dates, both of which are prominent in this book. As I watch Alex enjoy selecting books from the library and reading them at home, I’m pleased that he, like Ed and me, finds so much pleasure in reading.

“In that day the deaf will hear words read from a book, and the blind will see through the gloom and darkness.” Isaiah 29:18

Looking for Alex

When I come home each day after my job as a part-time teacher, Ed, who stays home with Alex every morning because he teaches afternoon and evening college classes, gives me a summary of how the morning went. Ed tells me what Alex ate for breakfast, how he did on his home school lessons, when he took his vitamin supplements, and what interesting things he did. Most importantly, Ed shares with me his impression of Alex’s mood for the day. During the turbulent adolescent years, Alex’s mood often determined how the day would go for all of us. If he was good natured, we could basically relax and enjoy the day, but if he was agitated, we had to proceed with caution around him, so as not to set off a meltdown. Fortunately, the past several months, Ed has been able to report to me consistently every day that Alex is in a very good mood and that his behavior has been excellent, which makes all of us happy. The other day, Ed threw a twist into his morning report by telling me that he had a brief scare that day. For me, “scare” was a bad choice of words as my heart began beating rapidly with a scare of my own and my mind rushing to figure out what terrible thing could have happened while I was at work. As I implored Ed to “cut to the chase,” he explained that he thought Alex was in his bedroom, but he couldn’t find him anywhere as he searched the house twice looking for him. Somewhere along the line, we learned that calling for Alex was a waste of time because children with autism often don’t respond when their names are called. I discovered years ago that a better way to get Alex to come to me is to yell, “Hey, Alex, do you want to go to Walmart?” This would bring him running to me because he is always ready to go for a ride to Walmart. Anyway, on a third search of the house, Ed found Alex sitting on the floor of our home office reading a book, hidden from sight of the doorway by a chair.

While many children with autism have a habit of wandering, we have been fortunate that Alex has never shown a desire to try to get out of the house. Terrible stories of children with autism emerge where frantic parents have searched for hours because their children could climb out windows, manipulate any types of locks put on doors, and wander away from home. Sadly, some children have drowned as they went into pools or ponds but could not get out of the water. Along with God’s watching over him, Alex has always seemed to have a healthy dose of fear that has prevented him from getting into dangerous situations. In addition, he doesn’t like heights, so he has never climbed up to get something or someplace. This was an advantage when he was little because I could put things on top of the refrigerator or in high cabinets (which required that I got a stool to retrieve them, but at least I knew he couldn’t reach them) and know Alex would not try to get them. In addition, his poor fine motor skills made child locks—or any locks for that matter— and childproof lids impossible for him. We were blessed that we really didn’t need to worry about Alex getting into things he shouldn’t or getting away from us. Nonetheless, we never completely trusted him, so we always kept a close watch upon him, our doors locked, childproof locks on areas we didn’t want him to be, things high out of reach, and our rear car door child locks engaged. In fact, I told Ed the other day—after I had been sitting in the back seat of our car and couldn’t open the door because of the child locks—that we could now take that safety feature off our cars because we can trust that Alex will not open the car doors while we are driving.

Even though Alex has never given us real reason to worry that he will wander, my fears about something happening to my child, who for many years had limited verbal skills and didn’t always respond to his name, have haunted my dreams. Once or twice a year, I go on a sleepwalking jaunt through the house. Although I only have vague recollections of these incidents, my mom and Ed, who have witnessed my behavior during these rare occasions, find them interesting, if not a little unnerving. Somehow I can successfully navigate a flight of stairs until I find someone I can tell my urgent message that has partially awakened me from a deep sleep. Wandering to the basement family room, where Ed is up late reading, I have been able to tell him my constant concern: I’m looking for Alex. Once Ed assures me that Alex is safely in his bed sleeping peacefully, I can return to my bed and sleep peacefully, as well. Since I have nightmares that I’m frantically looking for Alex, often a younger version of him, I’m sure that’s what sets off my occasional nighttime wandering. I have come to believe that looking for Alex has really become the focus of my life. Even though Alex is physically present, I have been searching for the boy behind the cloud of autism, the soul I know is in there. One of my favorite lines from the movie Rain Man about autistic savant Raymond Babbitt comes from his frustrated brother Charlie, who says, “You know what I think? I think this autism is a bunch of s*** because you can’t tell me that you’re not in there somewhere!” I have often felt that same exasperation, knowing that Alex is somewhere behind the hand flapping, the phrases repeated over and over, the meltdowns, and any other behaviors that make him different from other children. With every therapy and with each step of progress Alex has made, I feel thankful as we get closer to who the real Alex is. Until he overcomes every obstacle autism has presented, however, I keep looking for Alex.

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.” Matthew 7:7

Home Testing Kits

As I discussed in my last blog entry, “Haircuts,” learning how to cut Alex’s hair was one of the surprising skills I had to master because of his sensory issues. Another skill I never anticipated having to learn was collecting and preparing samples for laboratory tests for him. Since Alex had problems with yeast overgrowth in his digestive system and heavy metal poisoning, he required regular tests to assess his condition and to monitor the progress of his treatment. Both types of tests required that I learn how to collect his urine and stool samples at home following strict guidelines. As I did with tests as a student, I prepared conscientiously—reading the instructions carefully, highlighting key points with a marker, and studying these directions repeatedly to ensure I knew what I was doing. These tests were somewhat expensive, and our insurance refused to cover the costs. Therefore, I wanted to be certain that the results accurately reflected Alex’s condition. Thankfully, he was always remarkably cooperative when we were doing these collections. Between his interest in medicine and his fascination with numbers, Alex was a willing participant who wanted to see what numerical values and written medical assessments the tests produced when his doctor went over the results with us.

The good thing about these tests was that they did not inflict any pain upon Alex. The organic acids tests that measure yeast and the tests for heavy metals require collecting all urine for six hours. Before Alex was toilet trained, I made him go to the bathroom every half hour to make sure we didn’t miss any urine during the six-hour test. To make the process easier, I bought a specimen collection container commonly known as a nun’s cap from a home health care store. Not only was Alex willing to go in the plastic container, but he found it fascinating to see how much was there each time, noting the markings on the nun’s cap in ounces and cc’s. Moreover, he watched the clock carefully, keeping track of how much time he’d spent doing the test and how much time was left before completion. After each time he was productive, I had to pour his sample into a bright red plastic jug and put it in the refrigerator. Since we usually did this test on the weekend, that jug sat in the refrigerator until I could take it to the doctor’s office on Monday for them to send to the lab. After devoting six hours to each test, I fretted until the sample arrived safely at the doctor’s office because I didn’t want to have to repeat the test if the refrigerator failed to keep it cold enough or if the jug somehow spilled. Once, getting out of the car to deliver a red jug filled with Alex’s urine, I slipped on the pavement, fell down, and dropped the jug. My immediate thought was not for myself but for that jug. Fortunately, I wasn’t hurt, and not a drop was spilled.

While the stool sample tests requires less time in collection, the preparation of these samples requires more effort. The stool sample home collection kit contains a special small jar about the size of a pill bottle that contains preservative. To assist the person who is collecting and preparing the sample, the lab provides one latex glove. I’ve never understood the reason why two gloves weren’t included, but I kept a supply of latex gloves on hand so that I could use both hands. In addition, the kit includes a paper container for collecting the stool that one of my autism mom friends referred to as the “French fry basket” because it looks like the paper trays some restaurants use to serve French fries, complete with a brightly colored red and white checked pattern. At least someone must have had a sense of humor when packing those home testing kits. Once Alex produced the stool sample, then my work began. The test requires that samples be taken randomly from the stool collected, using a tiny plastic fork attached to the lid of the sample container. These samples must be collected until they reach a red line on the container. As if that weren’t unappealing enough, I had to use the plastic fork to mix the stool sample with the preservative in the container. Due to this experience, I found the old saying about the more you stir it, the more it stinks to be definitely true. Nonetheless, I managed to complete the task and prepare the sample to send to the laboratory. After packaging the sample carefully to ensure that it didn’t spill and placing it in a small Styrofoam container with ice packs and sealing that carefully in a special plastic envelope marked, “BIOHAZARD,” I called the overnight courier service to come and pick up the home testing kit. I always wondered if it made them curious and/or nervous about what was in that package. Nonetheless, those packages arrived safely at the lab, and our efforts paid off in accurate test results for Alex. Once Alex was successfully treated for yeast overgrowth and heavy metal toxicity, I was not only thankful that God had healed him of these conditions, but also grateful I didn’t have to prepare any more samples for lab tests.

“Then the Lord said to Moses, ‘…I will test them in this to see whether or not they will follow my instructions.’” Exodus 16:4

Haircuts

In becoming a mother, I knew there would be a variety of roles I would have to assume, including teacher, nurse, cook, and chauffeur. The one job I had never anticipated having to learn was barber. As I was cutting Alex’s hair the other day, I realized that I have been his personal hair stylist for more than fifteen years now. Fortunately, he likes the way I cut his hair, and his hair is easy to manage, straight and medium in texture—pretty much the same as mine, even in its color. The only tricky part is dealing with a couple of cowlicks he has, but I have learned to tame them over the years. The best part about cutting Alex’s hair is not the money that we save by my doing it for free, but his cooperation and even contentment as I trim his hair. He is always ready and willing to have his hair cut and seems to look forward having it done every four to six weeks. He’ll sometime come and ask me to cut his hair even when it doesn’t really need a trim, and I have to assure him that his hair is fine. As I cut his hair, he sits as still as a stone, yet he seems pleased to have me working on him. This calm attitude lies in sharp contrast to his earliest experiences with having his hair cut.

When he was little, we took Alex to the barber exactly three times before deciding this was not an option for him. The first time, I took him to an elderly gentleman who was very sweet with Alex and his tears all during the haircut, but he seemed to feel bad that Alex was upset. The next time I took him with my dad to my dad’s barber, who gave Alex a good haircut despite his constant crying. This barber, however, scolded Alex for crying, which put me on the verge of tears. The next time, I told Ed that he could take Alex to the barber since I found it heart-wrenching to watch him sob during his haircut. This time was apparently the worst for Alex because he came home with his face and eyes red and bits of freshly-cut hair mixed with tears and snot all over his face from crying so hard. Ed, upset by Alex’s tantrum, was not eager to take Alex back to the barber again after that experience. All three of these times at the barber occurred before we knew that Alex had autism, and looking back, I’m sure he was having meltdowns because of sensory overload, probably from the buzzing of the hair clippers and perhaps from the pulling of his hair as it was cut. Nonetheless, I decided that we would either have to let his hair grow, or I would have to learn how to cut a boy’s standard haircut. Opting for the latter choice, I bought a home hair cutting set with clippers and attachments, scissors, and a video showing how to cut hair. In my usual fashion, I watched the video several times, even pausing to write down notes and draw diagrams, before I was ready to tackle Alex’s hair. Because he had been so upset by his other haircuts, I knew that I would have to work fast and hoped that Alex wouldn’t be too hysterical, and I prayed that the first haircut I gave him wouldn’t be awful. Thankfully, the tips I’d learned from the video helped, and his haircut actually turned out fine. The most surprising thing, however, was that Alex never cried or became upset the entire time I cut his hair. Moreover, he was more cooperative than one would expect from a very young boy, and I was grateful that this was a pleasant experience for both of us.

Through the years, he has continued to be congenial during our home haircuts. When the weather is warm, we trim his hair on the screened porch, and when the weather is cold, our kitchen doubles as a barber shop. He and I like to listen to country music CD’s while I shear the back and sides of his head with clippers and trim the top with scissors. Sometimes he will play handheld electronic games to entertain himself during the haircut, pausing at times to brush off stray hairs that have dropped onto his game screen. For many years, I used an old towel with a hole cut in the middle for his head to keep the clippings off his clothes, but now we have a hairdresser’s cape that I bought at a beauty supply store, which works much better than the towel ever did. In all the years I’ve been cutting Alex’s hair, I’ve only had one minor mishap. As I was using clippers, they became stuck in a tangle, pulling off the haircutting guide comb, and he wound up with a small bald patch in the back of his head. Fortunately, a ball cap covered it nicely until it grew back, which didn’t take long. We never told him about it, so he was none the wiser. Now his main concern is that he has enough hair left in the front to twist with his fingers while he is thinking, but he prefers that the rest of his hair be kept short, which makes hair care easier for him. Every time I cut his hair with good results, I’m pleased that I was able to learn a skill I’d never thought I’d have to master out of necessity.

“I will be your God throughout your lifetime—until your hair is white with age. I made you, and I will care for you. I will carry you along and save you.” Isaiah 46:4

Balloons

Last weekend, we took Alex to our town’s annual Hot Air Balloon Fest that is part of the local Popcorn Festival held every year. While the Popcorn Festival holds absolutely no appeal for Alex, who hates popcorn and has no interest in the various craft booths that dominate the event, he eagerly anticipates the Hot Air Balloon Fest every year. Unlike the Popcorn Festival, which is held in the downtown area and crowded with people and filled with the smells of various foods sold at the booths, the Hot Air Balloon Fest takes place on the outskirts of town at the county fairgrounds and offers enough open space to prevent his feeling overwhelmed by the number of people there. Consequently, Alex handles the Balloon Fest well because he doesn’t experience sensory overload. For him, going to this annual event is a ritual he enjoys continuing, and he is especially proud that he has been to every single one of them. Of course, he doesn’t remember the early years because he was too little. Moreover, he certainly doesn’t remember the first year the Balloon Fest was held when I was five months pregnant with him at the time but managed to trot along with him in tow, in a manner of speaking.

The Balloon Fest features two different events: launches and glows. While the launches are impressive with approximately a dozen or more hot air balloons flying through the air, they require nearly perfect weather conditions. Rain and wind affect the safety of the balloon flights; therefore, the chances of the balloons launching in unpredictable Indiana weather are somewhat rare. The balloon glows, on the other hand, do not need as ideal weather because the balloons are tethered and do not take flight. These glows take place after dark, and the gas jets not only inflate the balloons but also illuminate them, making the brightly colored balloons striking in the darkness. Since the balloon glows are much more predictable, Alex has been to more of these events than the launches. We haven’t wanted him to be disappointed by going to the Balloon Fest and not getting to see anything happen, especially since we have gone to launches a few times only to have them cancelled by winds that were too strong. Going to this year’s glow, Alex had the same enthusiasm that he has had every year, and, of course, he carefully counted the number of balloons and came up with fifteen.

As we walked in with him this year, Alex moved through the crowd with a confidence and ease. His long legs and long strides make keeping up with him tricky for me with my short legs and short strides. Plus, his eagerness to get to see the balloons made him walk even faster than usual. In years past, we pushed him in a stroller, carried him as he got older, and then had to slow our pace for his little legs when he was a young boy who wanted to walk on his own, excited to see the “big balloons.” During his unpredictable adolescent years, Ed and I both had to hold him by an arm to make sure he didn’t bolt. Even though we had misgivings about taking him during those years when his behavior could suddenly change, we pulled together to make sure he could take part in something he enjoyed so much. Clearly, Alex has catalogued these memories in his usual way, by numerical values. In asking him about the various years he’s seen the hot air balloons, he told me that in 2003 and 2004, they had the most balloons with 22 both years. We also recalled that the last time we saw the balloons actually launch two years ago, they flew over our heads as we sat in the grandstands watching them. His favorite memory of the festival, however, was watching the glow in 2005, when there were 17 balloons. While he couldn’t provide specifics about why he liked that time so much, he simply smiled and told me that it was “special.” Even though Alex can’t always clearly verbalize his feelings, his eyes and smile light up his face, making us glad that he was able to experience something that meant so much to him and makes him happy to recall the memory.

“I lift my eyes to you, O God, enthroned in heaven.” Psalm 123:1

Books

A couple of weeks ago, the publisher of The Oxford English Dictionary announced that the forthcoming third edition might not come out in hardback, as previous editions have, and may only be available digitally online by subscription. We have not shared this news with Alex, who will probably be greatly disappointed since he has been saving up for a while to purchase the latest version of the dictionary. Although we admire his dedication to learning words and his tenacity in trying to save money for the projected cost of $1300, we really weren’t thrilled with the idea of having twenty volumes of over 21,000 pages lying around our house. Besides having nearly 300,000 words, the sheer size of The O.E.D. impresses Alex, and somehow I doubt the online equivalent will hold the same appeal for him. While Ed is enthralled with his new Kindle electronic book reader, Alex and I are still “old school” and prefer real books with pages we can actually turn.

Among the three of us, we own hundreds of books that reflect our shared love of reading as well as our individual tastes. Besides our books from college and the books we currently teach, Ed has a vast collection of books of poetry, along with biographies and art books, whereas my books include mostly contemporary novels, inspirational books, and many books on autism. Since Alex prefers nonfiction, his books fall mostly into the following categories: reference, science, and recreation. A quick look at Alex’s bookshelves reveals his various interests, and his favorite books can be easily identified by their worn covers and often bent page edges. Not only has he read these books many times, but he frequently slept with them. We have half-jokingly remarked that Alex probably learned many facts through osmosis by placing his head on his books while he was sleeping. Along with his books that are more academic in nature, Alex has several books about gambling, casino games, slot machines, and poker because he finds these games of chance and probability interesting. He also has a number of books about one of his favorite sports, NASCAR, but his favorite is the NASCAR Encyclopedia, a huge book filled with statistics about the sport and its drivers. Showing that he is a true Renaissance man, Alex also has quite a collection of medical books he enjoys perusing. Two of his favorites are the well-worn copies of the Merck Manual of Medical Information and the American Medical Association’s Family Medical Guide. More evidence of his love of science lies in his collection of The Handy Answer Books, including The Handy Weather Answer Book, The Handy Physics Answer Book, and his beloved The Handy Science Answer Book. In fact, he is on his second copy of The Handy Science Answer Book because he read the first copy until it literally fell apart. Similarly, he has an impressive array of math books about pi, his favorite being The Joy of Pi; again, he is on a second copy because the first one fell apart after Alex read it repeatedly.

Along with his special interest books, Alex has many reference books he enjoys studying. He always keeps a college dictionary close at hand along with a current edition of The World Almanac. Every year he requests the latest edition of The World Almanac for Christmas, and he has a collection of tattered and torn older editions that reveal how regularly he consults these books for information. In addition, he requests new copies of The Old Farmer’s Almanac every year, and he especially likes the information they contain regarding weather predictions and the times for sunrise and sunset for every day of the year. Alex has also intensely studied the two large Southwestern Student Handbooks my mom gave him that my siblings and I used when we were in school. Perhaps if we had studied them as closely as Alex has, we would know as much as he does. Because he also loves lists, he enjoys books that list facts, including the Guinness World Records books, of which he owns several editions. Two other favorite list books of his are the Factastic Book of 1001 Lists and I Love Lists!, both of which seem to be tailor-made for him. Another reference book he finds interesting is the phone book, which, I admit, I also find an oddly entertaining read, too. When the new phone books arrive each year, I think of Navin R. Johnson’s comment in the comedy movie The Jerk, “The new phone books are here! Things are going to start happening to me now!” Alex and I have an understanding that whoever puts down the new phone book forfeits the right to look at it until the other is finished. However, we’ve learned to share it nicely over the years. Although Alex doesn’t memorize everyone’s phone number the way Raymond Babbitt does in the movie Rain Main, he seems to find reading the ads in the yellow pages interesting. Whether he’s reading about NASCAR, gambling, science, or pi, or simply studying reference materials, books have opened up the world for Alex, engaging, enlightening, and entertaining him along the way.

“Search the book of the Lord, and see what He will do…His spirit will make it all come true.” Isaiah 34:16

Communicating Choices

Over the weekend, the three of us were going out to a restaurant for dinner. Since Ed and I had no real preference about where we would eat, we turned to Alex and asked him to choose the place. This incident has significance on various levels. A) Until recently, Alex’s behavior has been such that we wouldn’t consider taking him to a restaurant unless we were picking up take-out food and bringing it home. That he can dine in restaurants and act appropriately is a testimony to the improvements he’s made in the past several months. B) The advantage to having an only child is the use of said child to make decisions when the parents cannot or choose not to do so. He doesn’t have to compete with siblings who may not like his decision; therefore, he gets the final say when we allow him to make a choice. C) Another indication of progress in the past few months lies in Alex’s ability to make choices and to communicate them clearly. D) All of the above are true. The answer, of course, is D.

Not long ago, Alex was driving us crazy with his inability to make decisions. I’m not certain whether this was an issue with maturity or language, but he had great difficulty choosing between alternatives. For example, if I gave him two choices of what he could have for lunch, he would ask me, “What would be better?” When I assured him that both were equal, he would become agitated and repeat the question as though I had ignored him the first time: “WHAT WOULD BE BETTER?!” Rather than having him upset, I would simply suggest one of the choices, and that would satisfy him. I realized it was better not to present him with any alternatives and just put food on the table, so as to avoid any confrontations about what was preferable. This extended to his clothing, too. If I asked him whether he would rather wear a red shirt or a blue shirt, he would immediately ask, “Which is better?” Even though red is his favorite color, he still seemed unable to select a shirt. Again, I decided that having to make decisions was causing him unnecessary stress, so I would just pick out his clothes for him. Coming up with something to do in his free time was more difficult for him because he had to choose between many alternatives, not just two. Alex would come running to Ed or me and ask, “What do now?” This was a loaded question since giving him ideas about what he could do presented him with another challenge—choosing one of them. We learned quickly to suggest only two activities and then had him make the decision by flipping a coin, which he thought was fun. This idea worked well until he decided he didn’t really like either of the choices we offered him. Then I came up with a list of five of his favorite activities: reading, computer, television, handheld electronic game, or video game. After assigning a number to each of these, we would have him roll a die to see what number activity he should do. If he rolled a six, he had to roll again. Since Alex has a fascination with games of chance, such as dice games and slot machines, he liked this method of selecting what to do in his spare time. He was satisfied that probability determined his choices instead of having to do it himself. Interestingly, once the category was narrowed for him, he was able to choose within it by picking a television show to watch or a book to read or a game to play.

As with many situations, once we found a solution, the problem disappeared. Fortunately, Alex overcame his difficulty in making decisions. Now he never asks us, “What do now?” because he easily finds things to entertain himself in his spare time and doesn’t need a coin to flip or dice to throw to determine what he should do. Not only has he improved his decision-making skills, but he can convey what he wants more effectively, as well. A couple of weeks ago, we were having dinner at Panera Bread, and Alex seemed to be done with his meal. When Ed picked up our plates to put them away, Alex immediately grabbed his plate to let us know that he was not finished eating. I suspect that he wasn’t as interested in eating what was left on his plate as he was in letting us know that he really wanted to stay. Nonetheless, he kept his plate longer through his decisive action. Another indication of his improved ability to communicate his choices lies in his ability to respond to yes/no questions. Recently, my mom asked Alex near the end of their daily phone conversation if he had anything he wanted to tell her, and he responded with a definite, “No!” Similarly, in a conversation with Ed a few days ago, after asking Alex several questions, Ed gave Alex the opportunity to ask him a question. When Ed asked Alex if he had any questions for him, Alex replied with a resounding, “NO!” On the other hand, when presented with choices he does like, he eagerly responds with a strong, “YES!” No longer needing coins to flip, dice to roll, or suggestions from us, Alex can now make decisions without anxiety and can clearly convey them, thus displaying maturation through his increased independence.

“Who are those who fear the Lord? He will show them the path they should choose.” Psalm 25:12

Concert Contentment

Last week we took Alex to a jazz concert at Valparaiso University, which was the highlight of his week. As I mentioned in my blog entry “Music,” Alex loves several types of music, but jazz is a particular favorite of his. Like most special events, we waited until the last minute to tell him that we were going to the concert. If something interrupts our plans, we don’t want him to be disappointed. Moreover, despite the stereotype that people with autism prefer routines, Alex really enjoys spontaneity. If we suggest going someplace on the spur of the moment, he eagerly jumps up and runs to the bathroom in preparation for leaving. Since he goes around the house barefoot most of the time, he then takes off to get his shoes and socks. In between these activities and while waiting to leave, he often engages in what Ed has dubbed the “happy hop,” a spirited gallop Alex—at nearly six feet tall—does through the house when he’s pleased and excited about something.

Whenever we go to events, we carefully choose seats that easily allow quick exit in case Alex decides he’s had enough. At the concert we were able to find aisle seats near the door in the first row of an upper tier that provided a good view of the stage. The V.U. Faculty Jazz Trio, consisting of talented musicians who play piano, bass, and drums, performed that night. In addition, special guest performer Frank Catalano accompanied them on saxophone. While Alex seemed to enjoy all of the songs they performed, he especially liked Frank Catalano’s original composition “God Made It Beautiful.” [Click here for an excerpt of this song Alex enjoyed so much.] During the concert, which lasted over an hour with an encore, Alex displayed improvements that we have noticed in the past several months. First, despite being in an audience of about two hundred people, he did not seem bothered at all by the crowd or by the noise. Also, he has learned appropriate social behavior, namely being quiet during the concert, yet applauding at the proper times. Unlike many of the college students there, who are about the same age as Alex, he didn’t keep checking a cell phone for messages or texting people during the show. Even if he had a cell phone, I doubt Alex would want to be distracted while he was engaged in something as enjoyable as a concert. More evidence of his progress lies in his ability to keep time by tapping his hand on his leg. Prior to beginning music therapy nearly a year ago, he did not have a good sense of rhythm. Now he can move in time with the beat.

For me, the best part of the concert was watching Alex’s reactions of sheer joy in response to the music. Most of the time, he had a big smile on his face, and at times he would sway to the beat. Occasionally, he would be so overcome with happiness that he would shudder, as he often does when he is delighted and unable to hold back the joy he feels. Watching his contentment, I realized how truly blessed we are that Alex is so happy. While I have felt sorry for him through the years because I thought autism denied him a typical childhood, I now realize that he’s much more content than most people his age. Seeing him react to the music, I noted that he can express his emotions without inhibition and can find happiness in simple things. Because he doesn’t care about appearances, Alex reflects honestly what he feels. Most people worry about what others think of them and use restraint in showing their emotions. Although they may be saying, “Goody, goody” on the inside, they act cool and don’t always let on how thrilled they truly are. However, Alex lacks a poker face and lets everyone around him know how clearly thrilled he is, and in doing so, shares the joy in his contagious enthusiasm. He sees the world in the words of jazz musician Frank Catalano: “God made it beautiful.”

“He has given me a new song to sing, a hymn of praise to our God. Many will see what He has done and be amazed. They will put their trust in the Lord.” Psalm 40:3