Wednesday, September 29, 2010


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

Sunday, September 26, 2010

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

Wednesday, September 22, 2010

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

Sunday, September 19, 2010


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

Wednesday, September 15, 2010


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

Sunday, September 12, 2010


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

Wednesday, September 8, 2010

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

Sunday, September 5, 2010

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