Toilet Training

One of the early clues that Alex had developmental delays was his inability to toilet train as a toddler. In fact, toilet training was a great test of patience and perseverance for us because it took about ten years before Alex could use the bathroom completely independently without any daytime or nighttime accidents. We started working on potty training with him shortly before he turned three, but he was nearly thirteen before he knew when he needed to use the bathroom and was able to stay clean and dry around the clock. Fortunately, his slender build allowed him to wear Goodnights disposable training pants for boys until he was trained because otherwise we would have needed to put him in adult disposable underwear, such as Depends. While parents often reassure other parents by telling them that people never walk down the aisle at their graduation or their wedding carrying a diaper bag, I was beginning to think that Alex could be the exception to that rule. His preschool teacher had added to my concerns by informing me that if children are not potty trained by the age of five, they will never be potty trained. Thankfully, she was mistaken. In the decade that we worked on Alex’s toileting independence, we became adept at changing sheets in the middle of the night, doing lots of his laundry, and using spot remover on the carpets.

The lack of success in potty training was not due to lack of effort or resources on our part. I scoured the Internet for tips and tricks, read every book I could find, and purchased a variety of items I thought would help Alex catch on to using the toilet. I had heard that the technique described in the book Toilet Training in Less Than a Day was useful for special needs children, but their method did not live up to its titled hype for us. Since Alex liked to read books, I thought Once Upon a Potty might help him understand what he needed to do. He even had the deluxe version with the little boy doll and his potty that went along with the book, but Alex had no interest in the book, the doll, or the toy potty, let alone in his own potty. Knowing that Alex enjoyed watching videos, I bought some toilet training videos geared for kids and had great expectations for one made by Duke University Medical Center that garnered rave reviews. While the It’s Potty Time video may inspire some children, Alex wasn’t impressed with it, and I frankly found the “Super Dooper Pooper” song a little creepy myself. The most ingenious device I purchased was a system called the Potty Train which consisted of paper strips similar to feminine panty liners that had strips of foil on the bottom. These adhesive strips attached to the child’s underwear and a small device that activated when wet, playing a song to alert the child and the parent to run to the bathroom. Strangely, the song it played was “Theme from Love Story,” which seemed to upset Alex, who, needless to say, did not get on board with the Potty Train. In addition, we tried various reward systems, let him try to sink Cheerios in the toilet, had him pick out special big boy underpants, bought him various booster seats so that he would feel secure sitting on the toilet, and took him at regular intervals to the bathroom. Basically, nothing worked for him.

After several years and limited progress, I began to suspect that Alex could not make the connection between the sensation of needing to use the bathroom and actually going. I think there were physical issues that prevented his success, but we were able to address them eventually. First, he had problems with yeast overgrowth in his system, which were exacerbated by chelation since the sulfur compound DMSA used to remove heavy metals from the body encourages yeast overgrowth. Shortly before he was toilet trained, his doctor did intense yeast treatment by giving him the oral antifungal Diflucan for a month, which did the trick. In addition, we began giving him twice-weekly injections of the methyl form of vitamin B-12, which helps rid the body of toxins and heals nerve damage. Within just a few short weeks of starting these injections, Alex was completely toilet trained. I suspect that he could finally feel the urge to use the toilet, and he complied by going to the bathroom. About the same time, I was feeling pressure that he was nearly a teenager yet still having toileting accidents. I remember thinking that I needed to stop trying to control the situation and handed it all over to God in prayer. I really think that God answered my prayers and allowed Alex’s body to heal through the Diflucan and B-12 shots so that he could finally have toileting success. Whatever worked, we were thankful that he had finally mastered a task we had struggled with so long. Whenever he walks to the bathroom, does his business, and flushes the toilet, I feel blessed that Alex can use the bathroom by himself without needing any help, reminders, or encouragement from us. I also remember that Alex does things on his own timetable, and we just need to wait until he and God are ready for the right time.

“Commit your actions to the Lord, and your plans will succeed.” Proverbs 16:3

Top Ten

A busy yet pleasant back-to-school week in our household left me searching for ideas for today’s blog entry. Having made several lists to keep myself on track this week at home and at school, where I teach part-time, I realized that I had a topic, after all. The secret to my organizational skills lies in my affinity for list making. Like me, Alex is a great list maker. Sometimes he types his lists on the computer, and other times he jots his notes on random notepads or loose pieces of paper in his barely legible scrawl. Lately, he has taken to writing in old-fashioned composition books with their bound edges and marbled covers, and he likes that he never loses his lists by using these notebooks. With our shared love of lists, I knew I could draft Alex into helping me write about lists. As Alex’s language skills have improved, we have been able to get a better glimpse into how his mind works. The other day, I decided to ask him to give me a list of his top ten favorite things, only specifying that people could not be included.

Before he provided his choices, I jotted down the ten favorite things I felt certain he would choose. As his mom, afternoon home school teacher, and frequent companion, I thought that I could accurately predict what he would say. I was wrong. He only mentioned one of the ten items I selected. I guessed that he would choose the following items (in no particular order): 1) shrimp, 2) books, 3) computers, 4) weather, 5) clocks, 6) thermometers, 7) math, 8) You Tube, 9) jazz music, and 10) going places. Since these are the things that he seems to value as interests and possessions and often mentions as his favorites, I was sure most of these would appear on his list, too. Instead, after giving the question serious and careful thought, Alex came up with a list of his own. Midway through providing answers, he resorted to a calculation technique he uses, a more sophisticated version of counting on his fingers that includes flicking his index fingers, which is reminiscent of the Chisenbop technique, in which the fingers are used like an abacus. I’ve seen him use this finger movement to determine accurately the answers for difficult math problems when he doesn’t have a calculator handy. What he was calculating when figuring out his top ten list is beyond me. He simply smiled when I asked what he was counting. Nonetheless, he seemed to weigh his answers and came up with his own top ten list of favorite things, which he assured me were all of the same value and not ranked in any order. His list included the following items: 1) time, 2) calendars, 3) anagrams, 4) shapes, 5) baseball, 6) football, 7) basketball, 8) country music videos, 9) Who Wants to Be a Millionaire, and 10) weather/stock market. Actually, after he told me weather and realized that was the last one on the list, he changed his mind and wanted to put the stock market instead. Since weather was the only one on both of our lists, I told him that he could have eleven choices; the list was my idea, after all.

Alex’s love of measurements, numbers, and letters explains his first three choices of time, calendars, and anagrams. I thought that his choice of shapes had to do with geometry, but he told me that shapes reminded him of speech therapy when he was little. He and I often watch country music videos together, and I should have remembered to include it on the list I made. His interest in sports has grown over the years, and watching sports is an activity he enjoys sharing with Ed. Once again, though, he displayed his enthusiasm for measuring, telling me what he liked best about sports: “Yard lines, quarters, and extra innings.” Similarly, his fascination with weather lies in measuring temperature, which is why I included thermometers on my list. While I thought that his interest in the stock market reflected his mathematical mind and watching money trends, he informed me he most liked following Microsoft. After all, Bill Gates is one of his heroes. Perhaps the most surprising choice was Who Wants to Be a Millionaire because he has other game shows that he follows more religiously. He explained to me that what he likes about Millionaire is that they give four choices. Considering how language does not come easily for Alex, the idea of multiple choice probably comes as a relief for him because he doesn’t have to supply the answers, just choose them. Given time, Alex probably could have listed one hundred things he likes since he enjoys so many things in life. He subscribes to the sentiment Robert Louis Stevenson opines in A Child’s Garden of Verses, “The world is so full of a number of things, I’m sure we should all be as happy as kings.” I suspect that Alex is even happier than most kings, even happier than most of us, because in the everyday, ordinary things, he sees wonder.

“Who can list the glorious miracles of the Lord? Who can ever praise Him enough?” Psalm 106:2

Remembering the Roses

Years ago, I noticed a framed text hanging on the wall of the room where I waited while Alex was doing occupational therapy. On that wall hanging was an essay entitled “Welcome to Holland,” a work many parents of special needs children have read at some point. Basically the gist of this work is that you wait and plan all your life for a trip to Italy, but suddenly you find you are going to Holland instead. This becomes a metaphor for having a special needs child: you waited all your life to have a child, and now that child is not what you expected. The Holland essay describes the initial disappointments, but then goes on to point out the positive aspects. Frankly, I think the Rolling Stones sang a similar theme better, “You can’t always get what you want, but if you try sometime, well, you just might find you get what you need.” Parents of children with autism have written parodies of “Welcome to Holland,” most memorably “Welcome to Beirut,” in which having a child with autism is like being sent to a war zone. At times, our life has been “Welcome to a Remote Island” because we have felt isolated—and sometimes have deliberately isolated ourselves—from the rest of the world, dealing with issues that other families don’t understand unless they’ve experienced them first-hand. Most of the time, however, I would describe our life with autism as “Remembering the Roses.”

To understand this parallel, I need to explain the plot of one of my favorite “guilty pleasure” movies, Ice Castles. [SPOILER ALERT!] This movie follows a talented young figure skater who is permanently blinded in an accident, but through the love of her father, boyfriend, and a mother figure learns to ice skate again. In preparation for her return to competition, they plan every detail carefully ahead of time to make sure nothing goes wrong because Lexi, the skater, doesn’t want anyone to know she’s blind and feel sorry for her. Their plan almost works. After a successful skating program, fans throw roses on the ice to show their appreciation, which trips the blind skater. Her boyfriend comes out on the ice to help her up and clears the roses out of her path so that she can skate off the ice safely. He then tells her, “We forgot about the roses.” For me, this is the best explanation for our life with autism.

Life with autism has required that Ed and I carefully plan ahead to avoid circumstances that will upset Alex and send him into a meltdown. Not only do we discuss possible pitfalls and things that might set off Alex, but we come up with ways to soothe him, should these events occur. None of us want to be taken by surprise, to be tripped by roses we hadn’t foreseen coming. Of course, things happen in life that are beyond our control: the power goes out in the middle of a video game, the cable television goes out in the middle of his favorite game show, someone innocently says something he doesn’t like, and other inconveniences occur. Sometimes we forget about the roses and risk his wrath. While we cannot plan when these roses will hit the ice, we know they will and try to have action plans ready so that he can cope with disappointment. One evening when Ed was teaching class, we had a sudden power failure, and I had to regroup quickly to deal with Alex’s agitation. Grabbing flashlights, lighting candles, cranking a radio to listen to music, and pulling out the dice game Yahtzee for us to play, I was able to convince Alex that this was an adventure. He especially liked taking the flashlight to use the bathroom and decided to do that about every fifteen minutes for fun. Nonetheless, he adjusted well, and as they say, “No harm, no foul.” As he has gotten older, he has been more flexible and less likely to become upset when the unexpected happens, which is a blessing. Still, Ed and I constantly plan ahead, trying to make the path smooth for Alex so that he can move forward safely and easily, not tripping over any stumbling blocks along the way.

“Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong.” Hebrews 12:13

Returning to Routines

In June, I decided that one of my summer projects would be to start writing about Alex and some of the ways that autism has impacted our lives. While I had thought about doing this for a while, I never made the time to dedicate myself to this task. Creating a blog, I thought, would discipline me to write on a regular basis and would afford me the opportunity to gain feedback from others about what I had written. Initially, I had intended for this to be a way for Alex to remember his childhood, perhaps as atonement for abandoning writing in his baby book once I suspected he had autism, as I explained in the blog entry “Milestones.” Then, I realized the writing has helped me come to terms with various events in Alex’s life. Some of the bittersweet memories are no longer bitter since we’ve learned to find the humor in situations that didn’t seem funny at the time. In addition, we’ve been able to share some of our lives with family and friends who knew parts of the story but not all of the details. In telling our experiences, I also hoped that other parents of children with autism might find our stories helpful, especially since we have weathered storms and are now enjoying sunshine most of the time.

When I first started writing the blog entries, I thought that only my parents and Ed would faithfully read them. My mom has always been my biggest fan and my favorite brainstorming partner, and she has fulfilled both roles regarding this blog. Providing encouragement, constructive criticism, and ideas for writing, she, as always, has been loving and supportive as my mother and Alex’s grandmother. Ed, who has written a very successful blog of his own, “One Poet’s Notes,” for several years, has not only given me frequent reassurance that I can do this, but he has also patiently taught me how to attach photos and links, given me advice about layout and writing, and promoted my blog by mentioning it in his own. Moreover, he’s a terrific father to Alex; I couldn’t have raised this child successfully without his unselfish love for both Alex and me. Of course, Alex, the inspiration for these writings, continues to bless us with his unique outlook on life, his humor, and the joy he finds in unexpected places. Writing the blog has opened up a new line of conversation between the two of us as he reminds me of the details I’ve forgotten. To watch his reactions—often his shudders of delight—as he reads what I’ve written about him is more reward than I could ever ask for. The unexpected blessing in writing this blog has been the outpouring of encouragement from Ed’s family and my friends. In my entry “Support,” I wrote about how fortunate I have been to have very caring friends, and I have been reminded this summer that God has surrounded us with such loving and compassionate people. After a little over two months and thirty blog entries, my writing has been read nearly two thousand times, which boggles my mind. Although I don’t know who has read my entries, other than those who have told me or written to me, my site meter shows that my blog has been read on five continents and in twenty-five countries around the world, which I never would have expected. However, more than ever, I am motivated to tell Alex’s story and share a hopeful message that life with autism does get better over time.

This week, Ed will resume teaching his three college English courses in the afternoons and evenings, Alex will start his senior year of home school lessons (mornings with Ed, afternoons with me), and I will begin my school year of teaching three seventh grade English classes in the mornings. While I am sad to see the summer end, especially since the three of us have thoroughly enjoyed our time together, we anticipate a good year as we return to routines. Ed and I are fortunate to have jobs that we enjoy and that allow us to be with Alex more than most jobs do. Alex, who likes routines, eagerly looks forward to a new school year because he has never lost his curiosity about the world and his love of learning. As much as I have liked structuring the blog in threes with three entries per week of three paragraphs each (perhaps representing the three of us), I know that the responsibilities of teaching Alex and my seventh grade students will limit my time to reflect and write. Consequently, I will combine my Tuesday and Thursday blog entries into one on Wednesday, but will continue the Sunday entries as we return to our school schedules. While I’m pleased that I’ve been able to accomplish what I set out to do in June, I have a notebook filled with jottings I want to develop into entries that I hope people will want to read. The encouragement I’ve received from family, friends, and followers, along with God’s faithful support, has made me believe that writing should now be part of my routine, and I hope that those who read it will be as blessed as I have been by their kindness.

“I can do all things through Christ who strengthens me.” Philippians 4:13

Marking Time

Since Alex loves numbers, he finds the concept of time interesting, and he values the tools used to measure seconds, minutes, hours, days, months, and years. He has collected a variety of stopwatches, clocks, and calendars so that he can keep track of the passing of time himself. Alex especially likes precision when discussing time. For example, if we tell him that we’re leaving in five minutes, he might ask, “Five minutes approximately or seven minutes exactly?” Or if we tell him something will happen in a couple of months, he’ll correct us by saying something like, “About two months or exactly two months and four days?” Apparently he subscribes to the idea expressed in American Idol Kris Allen’s song “Live Like We’re Dying”: “We’ve only got 86,400 seconds in a day to turn it all around or to throw it all away.” Alex sees each second as precious—even fractions of seconds matter because he bought a stopwatch that measures thousandths of a second so that he could time the exact length of television segments and commercials.

When Alex was younger, he was obsessed with time and would repeatedly ask us what time it was, even though he knew how to tell time. Unlike many children of his generation who can only read digital clocks, Alex has been able to interpret analog clocks since he was little. Despite his interest in time, he refuses to wear a watch because he doesn’t like the feel of it on his wrist. Therefore, he relies on the numerous clocks we have in nearly every room of our house. Fortunately, he has mastered how to change all the various timepieces we own. This skill is especially handy if the power goes out or when Daylight Savings Time begins or ends, requiring the clocks to be turned back or ahead one hour. For the rooms that don’t have clocks, Alex carries a battery-operated alarm clock with him. He takes a black clock into the bathroom with him, and he brings a silver clock and puts it on the table to watch as he’s eating. How he determined which one was for which purpose remains a mystery, but he never uses the eating clock in the bathroom or the bathroom clock in the kitchen. For a while, he would also set the kitchen timer because he only wanted to eat for ten minutes. Once the buzzer went off, he was through with the meal unless we granted him bonus time to finish. Probably his favorite clock, though, is the atomic clock in his bedroom, which measures the time precisely using radio waves. He takes comfort in knowing that the atomic clock provides exactly the correct time.

In addition to his clocks, Alex also has several calendars that he keeps in his bedroom. While most people use calendars to know what the date is and to plan events, Alex likes to study calendars and the patterns that they follow. He finds perpetual calendars especially fascinating, seeing how one year leads into another and how Leap Year impacts the way the days fall in the months. Last year, when we asked him what presents he would like for Christmas, he told us he wanted “old calendars.” After giving his request some thought, I decided to look online at the website eBay to see if I could find him vintage linen towel calendars and was amazed to find several available. After surveying the selection, I bid on some of these linen towels and was able to get him relatively inexpensive calendars from various decades: 1957, 1963, 1974, and 1989. He was thrilled with these old calendars and would lay them out to study them. This summer, he specifically requested calendars for 1996, which is the first year he can remember, and 2004, which was the year Ken Jennings set the record for most consecutive wins on the game show Jeopardy. Fortunately, I was able to obtain calendar towels for those years, as well. In addition, his aunt in New York sent him a calendar towel for the current year, 2010, to add to his collection. Despite Alex’s insistence upon accuracy of time measurement, he has always done things on his own timetable because of his developmental delays. Perhaps this is why he needs tools to measure time himself and make sure that nothing passes him by as he waits to master skills in his own good time.

“At the time I have decided, my words will come true. You can trust what I say about the future. It may take a long time, but keep on waiting—it will happen!” Habakkuk 2:3

Making Wishes

This past weekend, we celebrated my birthday. Every year Ed specially orders my delicious bakery birthday cake with layers of banana, chocolate, and white cake alternating with strawberry and banana filling. Because of Alex’s restricted diet, I always bake him a very tasty gluten-free and casein-free cake for family birthdays as well as his own. In addition, we place candles on his cake for him to blow out and make a wish, even on other people’s birthdays. Until he was nine years old, Alex couldn’t blow out birthday candles because he couldn’t figure out how to pucker his lips and push air out of his mouth. This year, as he has done for the past several years, he was able to blow out his candles successfully. On my birthday he proclaimed his current wish—to be able to vote. We assured him that now that he has registered to vote, he will get his wish on Election Day in November. Surrounded by the four people I love best in the world—Alex, Ed, and my mom and dad, I listened as they sang a heartfelt, if not musically harmonious, version of “Happy Birthday” and waited to blow out the candles and make my wish.

For years, my birthday wish has remained the same: for Alex to get better. “Better” has meant different things at various points of his development. Early on, my wish was for him to improve his speech so that he could talk with us. Then, I wanted for him to be able to use the bathroom consistently and independently. After he had made progress in his speech skills and had finally mastered toilet training, my wishes focused on improving his behavior. Primarily, I hoped that his anxiety-driven meltdowns would disappear because watching Alex become so distraught was upsetting for us, too. While I liked to think that my wishes were unselfish in wanting for things to be easier for Alex; to be truthful, I also wanted life to be easier for me. In the past year, Alex has made significant progress in many ways, and, thankfully, my life has become much simpler. His contentment has brought us the happiness I had imagined and hoped for every time I blew out my birthday candles.

This year I had a dilemma because I really didn’t know what my birthday wish should be since Alex is so much better. Of course, I want him to continue to improve and make progress, to reach his full potential, and to be happy and healthy. I guess I still wish for him to get better. In the meantime, I try hard not to worry about his future, which is still a mystery. Perhaps someday he will become a meteorologist, or an astronomer, or a stock broker, as he has discussed. When he was younger, I couldn’t have predicted that he would become the congenial young man he is today; therefore, I don’t want to limit my vision of what life holds for him. Besides, I place more credence in my faith in God and His plans for Alex than in the superstition of birthday candle wishes, anyway. Right now, I savor the current blessings and look forward to the ones to come, reminded of a line from the title character in Willy Wonka and the Chocolate Factory: “Don’t forget what happened to the man who suddenly got everything he always wanted…He lived happily ever after.” After years of working to overcome the obstacles autism created for Alex, I feel as though God has granted my wishes, allowing us finally to live our own version of that fairy-tale ending.

“You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.” Psalm 139:16

Miniature Golf

This summer, we have taken Alex to play miniature golf at a local course. While most families would view this type of experience as rather mundane, we see these outings as special because for us they represent life as a typical family. For several years, Alex’s unpredictable behavior made such family activities difficult, if not impossible. During the early teen years, his lack of patience would have meant having to listen to him whine repeatedly, “Oh no, this is taking too long!” Moreover, the thought of putting a golf club in his hand could have been a bit frightening. Nonetheless, he has overcome many sensory issues and has matured into a young man whose behavior is usually beyond reproach. To say that we are proud of Alex and his progress is an understatement of the joy and sense of accomplishment we feel.

When we play miniature golf, Ed shows Alex where to stand, and he stands behind Alex with his hands over Alex’s to guide his swing. Alex’s poor motor planning skills makes playing sports difficult, but he’s a remarkably good sport and not terribly competitive. He really doesn’t care that he’s not athletic. (He probably gets that from his mother.) Ed, however, wants Alex to learn the correct technique, so he patiently guides Alex into the proper swing and repeatedly reminds him to look at the ball. Alex, who is delighted to be anywhere, looks at all the people on the course and activities around him, smiling from ear to ear; the golf ball is probably his last priority. Surprisingly, for someone who loves numbers and rankings, Alex doesn’t care what par each hole has, nor what the scores are along the way. He’s just happy to be there. On our most recent outing, Alex somehow managed to get a hole-in-one, which pleased him, but not as much as watching the little kids ahead of him playing miniature golf. For Alex, the best part of the course is the opportunity at the end to win a free game. After the eighteenth hole, players drop their golf balls in a wooden box with various blocks that guide the ball to the end. This contraption looks like an inverted pinball game; it reminds Alex of his favorite game on The Price Is Right, Plinko, where players drop round disks onto the Plinko board, and depending on where the disks land, they win that amount of money. If the golf ball lands in the right spot, the player wins a free game of miniature golf for the next visit; earlier in the summer, Alex and I both won free games by having our golf balls land precisely in the right spot.

For Alex, the real highlight of our trip to the miniature golf course is a visit to the adjoining arcade. Despite all the sensory overload of flashing lights, loud noises, and crowds of people, he loves playing the games and can focus on the task at hand. Because he plays the video game Pac Man at home, he likes playing the Ms. Pac Man arcade game there; it’s familiar to him. While his motor issues impede his golf game, his hand-eye coordination for video games is amazingly good. His favorite game at the arcade is Deal or No Deal, based on the game show of the same name that he watches nearly every day on the Game Show Network. We have learned to predict that Alex will always reject the banker’s offer of a deal to buy the money case he has chosen because this makes the game last longer. He isn’t as interested in the amount he wins; he just likes playing the game. The last time we were there, I noticed a woman pleasantly watching Alex, who was happily engaged in a game of Deal or No Deal. She motioned me over and handed me a large number of tickets to be cashed in for prizes that she had won playing arcade games herself. She said to me, “I’d like your boy to have these.” Touched by her act of kindness, I told Alex that a nice lady had given him her tickets. Alex used her tickets and the ones he’d won himself to select two prizes—a stuffed turtle and a rainbow-colored plastic Slinky, both of which he carried around for several days as a souvenir of the fun he had that day. While at times I am tempted to feel sorry for Alex because of his difficulties with language, social, and motor skills, I realize that God has blessed him with an increased capacity for happiness—Alex finds great joy in simple things, teaching us to appreciate them, as well.

“Yes, joyful are those who live like this! Joyful indeed are those whose God is the Lord.” Psalm 144:15

Files

This past week, I have been sorting through the files and records we have kept on Alex over the years: medical, educational, home school, and various therapies. Although I did not keep up with recording data in his baby book, as I explained in my earlier blog “Milestones,” I have kept carefully assembled files detailing Alex’s early years with autism. In going through his special education individualized education plans, or IEP’s, from ages four to six, I was reminded how strong his early reading and math skills were. His preschool teacher described his reading skills at age four as, “exceptional as he reads and spells many words.” She also mentioned that he would spell words aloud; we knew he did this to make sure he was understood because he was aware that his speech wasn’t always clear. Addressing his math skills, she wrote, "Information that is sequential has always fascinated Alex, and he organizes his routines and information this way. He is particularly interested in the calendar and numerals.” In a later report, I gave the following example of Alex’s ability to sequence at age six. During a V-8 vegetable juice commercial, Alex turned to me and teasingly asked, “V-9?” When I suggested W-9 instead, he thought for a minute and responded, “V-8, W-9, X-10, Y-11, Z-12!” This early preference for sequences and numbers has continued through the years, since Alex’s favorite subject, as well as his strongest, has always been math.

In reading through the evaluation reports, I recalled how clever Alex was about controlling situations to his liking, despite his limited language. In his first evaluation at age four, the educational diagnostician noted that Alex ignored the toys in the room and simply wanted to look at the books. She explained, “He was not interested in any other activities and, in fact, tried to discourage other activities by repeating, ‘Bye, bye’ whenever they were offered.” She went on to state that in order to test him effectively, she had to follow routines that Alex insisted upon and “taught” her. For instance, Alex needed to have his words repeated back to him so that he was sure the listener had understood him. To get the diagnostician to repeat what he had said, he would put his hand on her lips after he had spoken to indicate that she was to say what he had said. In addition, she commented that he bumped his knee at one point during testing and wanted her to rub his sore knee. She further explained what she did next: “When the examiner then kissed her own hand and touched Alex’s hurt knee, he kissed the examiner’s hand.” Apparently, Alex was satisfied that she had learned the lessons he wanted to teach her. In another later evaluation, the school speech therapist also discovered his need for control. She noted, “He often insisted on saying all the words he could see written on the test materials, rather than following directions.” In addition, she was none too pleased that he was reading the answers, which were written upside down on the bottom of the test page, even though I had warned her beforehand that he could easily read words in any position. Not surprisingly, these test results were not terribly valid because Alex had found a way to outsmart the system.

Besides the academic and evaluation reports, the comments in these files that others made about Alex reveal his strengths. For instance, his beloved occupational therapy assistant described five-year-old Alex in her report, stating, “Alex comes easily to the therapy room and is pleasant and generally cooperative.” A few months earlier, I had said in the IEP conference report that his private speech therapist had praised Alex in a written report to me by remarking, “I just love working with Alex—so loving and cooperative. Excited at most all we do—I love the happiness.” In that same conference report, I shared that his pediatrician had told us when he was four, “When Alex starts talking, it could be kind of scary because he’s so smart.” His pediatrician—like his private speech therapist, occupational therapist assistant, the educational diagnostician who first tested him, and others who have been perceptive about Alex—realized that behind the autism lies a child with much to offer. Those who see Alex for what he is, instead of focusing on what he is not, gain a glimpse into a special soul who takes delight in the world around him.

“At the Lord’s direction, Moses kept a written record of their progress. These are the stages of their march, identified by the different places they stopped along the way. “ Numbers 33:2

Food

Fortunately, Alex has always had a good appetite and been willing to eat a wide variety of food. With the exception of three things—popcorn, mashed potatoes, and sometimes broccoli—he likes nearly every type of food, even peas and carrots, which many kids (and his father) won’t touch. He especially loves shrimp and would eat it morning, noon, and night if he could. When we take him to restaurants, he frequently clears his plate and devours half of my dinner, as well. Despite his hearty appetite, he remains slender, partly because he inherited Ed’s metabolism and build, and partly because he primarily eats healthy food instead of junk food. His willingness to try new foods has been a blessing because when he was about seven years old, we discovered that he has food sensitivities and had to remove certain foods from his diet.

After reading that children with autism often have food allergies, I asked his doctor to run a blood test to see if Alex had issues with food. The test results indicated that, while he had no true allergies, he did have sensitivities to several foods, including green beans, bananas, and eggs, which were three of the foods he most frequently ate at the time. (Some children develop sensitivities to the foods they eat most often.) The bigger concern involved his sensitivities to milk and glutens, which are proteins in many grains. In Dr. William Shaw’s book Biological Treatments for Autism and PDD, he explains that many people with autism lack the ability to digest completely caseins, the proteins in milk products, and glutens, the proteins in grains such as wheat. These improperly digested bits of food, called peptides, can wreak havoc on the system. He states, “These peptides from gluten and casein are important because they react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine.” (Shaw, 126) Considering how mellow and somewhat in a fog Alex seemed at the time, I suspect that he was essentially being drugged by some of his food. His doctor suggested that we eliminate all foods to which he was sensitive for three months to give his body a rest and then reassess after that. We made the commitment to keep his diet completely free of these foods for those three months, but we found that he seemed to be almost addicted to glutens and would try to sneak bites of bread, even though we had hidden the offending food from him. Gradually, he adjusted to the new diet, and we learned what he could and couldn’t eat. After three months, we re-introduced all foods, except for those with gluten or casein. He was so much more alert and had filled out his overly thin body to a healthy weight after being on the casein-free and gluten-free diet, usually known as the CFGF diet, which seems to help a number of children with autism. We suspected that his digestive system was healthier on this restricted diet, and his brain worked better without foods that didn’t agree with him.

The CFGF diet requires learning to read food labels and nutritional information on restaurant websites carefully to make sure no sources of glutens or caseins are present. Alex has even become adept at knowing what he can and can’t eat on this diet. While he trusts that Ed and I know what is allowed, he will question others if they offer him food, asking, “Does this have wheat or dairy in it?” Even though my mom is also good about knowing what he can’t eat, I have found Alex in her kitchen reading food labels, making sure that she’s feeding him foods that are acceptable on his diet. We are fortunate to have local stores that carry CFGF foods, especially the tasty Kinnikinnick baked goods, including donuts and cookies, as well as Tinkyada pastas that have the same flavor and texture as regular pastas do. I have also learned to bake with rice, potato starch, and tapioca flours, along with rice milk and Fleischmann’s unsalted (dairy-free) corn oil margarine. Carol Fenster’s allergy cookbooks, along with the Special Diets for Special Kids cookbook, have helped tremendously in preparing delicious foods within Alex’s diet. While the CFGF diet has taken some diligence and research on our part and good cooperation on Alex’s part, we are convinced that the effort has been worthwhile because Alex has been remarkably healthy through the years.

“He gives food to every living thing. His faithful love endures forever.” Psalm 136:25

Faith

Every night before he goes to bed, Alex faithfully says his prayers. When he was little, he and I would recite, “Now I lay me down to sleep; I pray the Lord my soul to keep. If I should live for other days, I pray the Lord to guide my ways.” Then we followed this simple prayer by asking God to bless all our family members, naming them individually. As he got older, he would say the first part of the prayer silently, closing his eyes and moving his lips, but he would say the God blesses aloud by himself. Besides, “Mommy, Daddy, and Alex,” he names his grandparents, aunts and uncles, and cousins as those whom he wants God to bless. He also includes a boy with autism whom he met several years ago only once, but who made such an impression on him that he still asks God to bless him every night. When his twin cousins were born a few months ago, he immediately added them to his blessings list. Since they didn’t have names right away, he simply said, “God bless the new cousins.” Now he says all of the prayer silently, but he ends it with a resounding “Amen” to let me know that he’s finished praying and that I can kiss him goodnight.

As I mentioned in my “Rating" blog entry in June, Alex holds the highest esteem for God, rating Him as one hundred percent smart and one hundred percent funny. No one else compares in Alex’s mind when it comes to being intelligent and humorous. Moreover, if Alex asks a difficult question, and we tell him that nobody knows the answer, he will adamantly insist, “God knows! Ask God when you get to heaven!” Alex looks forward to heaven when he can ask God about all those pressing issues that he can’t find solutions for on the Internet. (I have some questions for God, too, I must admit!) Nonetheless, Alex still tries to find answers to his own version of theological questions. In looking through his Google search histories, I’ve discovered that he has asked some interesting questions. Because he quantifies everything and needs to attach numerical values, Alex asked Google, “How old is God?” in hopes of gaining some sense of learning more about Him. One of the most interesting inquiries I discovered he’s made on Google, “Can you talk when you get to heaven?” probably reflects his desire to interview God about the questions that couldn’t be answered in life. I certainly hope the response to that question is yes.

Alex’s faith in God has remained steadfast through the years, but he recently asked Ed, “Is God real?” apparently needing some reassurance about his heavenly father from his earthly father. He was concerned if he couldn’t see God, then perhaps He wasn’t real. To explain God’s presence, Ed held up Alex’s hand and blew air on it. He asked Alex if he felt the air, and Alex responded that he did. Then Ed asked Alex if he could see the air, and Alex said no. In a wonderful metaphor, Ed explained that God is like air: you can’t see Him, but you can feel him, so you know He’s always there. This simple yet touching explanation made sense to Alex, who understood the parallel, and seemed to push away any doubts he was feeling. Alex confidently knows that not only is God real, but that He will always take care of him and eventually will answer all those questions that no one else can.

“Faith is being sure of what you hope for and certain of what you do not see.” Hebrews 11:1

Television

Like many children, Alex finds watching television a pleasant pastime. Besides entertaining him, television has been an important teaching tool for him, as well. When he was a toddler, he liked the PBS children’s shows best; Sesame Street and Barney were special favorites. Besides appealing to his interest in learning letters and numbers, these shows also demonstrated social skills through the characters’ interaction with one another on the shows. As a preschooler, he became a fan of cooking programs and enjoyed watching the Food Network Channel. He referred to his favorite chefs—Mario Batali and Emeril Lagasse—on a first-name basis, as though he thought of them as friends. Not surprisingly, he would usually choose to spend time in the play kitchen at preschool; when asked what he wanted to do for free time, he’d always give the same answer: “Cook!” He also liked to cook with me, helping read directions from recipes and participating in the cooking process, imitating what he’d seen his favorite chefs do on tv.

When Alex grew a little older, he preferred watching game shows on television. An early choice was Wheel of Fortune, which is typically a favorite of children like him who have hyperlexia and are precocious readers because they enjoy seeing all the letters and words on the playing board. He became very good at playing Hangman and other word games from watching Wheel. Later, he became fond of The Price Is Right as his interest shifted to numbers and money. Watching The Price Is Right has been beneficial for him because, unlike the savant character with autism in the movie Rain Man, Raymond Babbitt, Alex can accurately identify the price of a candy bar or a brand new car. This show has given him a good sense of how much many typical items realistically cost. Once our cable system began carrying the Game Show Network, Alex became an instant fan, watching old episodes of Match Game, Family Feud, Deal or No Deal, and others. In addition, he really likes their current show Lingo, a word game that has made him adept at solving anagrams. During adolescence, Alex began faithfully watching Jeopardy, which has not only taught him many facts in a wide variety of topics, but also allows him to reveal the vast base of knowledge he already has as he plays along with the contestants. Among his idols is Ken Jennings, who holds the record for most consecutive days of winning on Jeopardy. For a while, he even thought it was clever to sign his name as Kenneth as an homage to his favorite Jeopardy champion.

In the past few years, Alex’s tastes in television resemble more closely those of his peers. While he still enjoys game shows, he also watches various news shows and a variety of televised sports—primarily baseball, basketball, and NASCAR. In addition, he follows poker tournaments on television, especially if his favorite poker pros are playing. Recently, he has begun watching sitcoms; previously, he had no real interest in shows that had a plot. Moreover, his language delays probably inhibited his ability to enjoy verbal humor. Now he regularly watches the comedies The Big Bang Theory and The Middle, and he laughs appropriately at what is funny in these shows. I suspect he is drawn to both shows because two of their main characters, Sheldon and Brick, share many of Alex’s qualities: very intelligent, socially awkward, and often humorous. (Additionally, both characters, like Alex, have a penchant for wearing striped shirts almost exclusively.) Perhaps Sheldon and Brick represent people Alex can relate to and understand, which endears them to him and to us, as well.

“The Lord keeps watch over you as you come and go, both now and forever.” Psalm 121:8

Transitions

Having taught middle school for several years, I thought that once Alex entered adolescence, I would have an advantage in how to deal with these early teen years. Certainly, I recognized particular behaviors as typical for that age, such as his reaching to touch the tops of door frames, something that most adolescent boys seem to enjoy doing as a sign that they are growing taller. I had seen this behavior many times in my seventh grade male students, but was surprised to see Alex do it because I don’t think that he had witnessed other boys doing this. (Apparently, this action must be an instinctive behavior preprogrammed on the Y chromosome.) Also, while I knew that young teens like to whine and complain about being bored and that boys this age seem to have boundless energy, living with an adolescent was much different than teaching seventh graders. One day when Alex was in his early teens, I was bemoaning to a friend and colleague that Alex was, frankly, driving me crazy. My friend, who had successfully raised two typical sons of his own, offered me the following reassurance: “Just wait until he’s eighteen or nineteen; you’re really going to like him then.”

The approach of Alex’s eighteenth birthday last winter filled me with a mix of pride and fear. While we were proud of the accomplishments he’d achieved and the progress he’d made over the years, the idea that he would officially be an adult unnerved me. Nonetheless, I started investigating the things we needed to do now that he was of legal age. First, I had to register him for Selective Service, who makes clear that they don’t care if the young man has a disability because they’ll assess that themselves should the military draft be reinstated. Since the likelihood of Alex serving in the military is next to nil, that process was simply one to check off my list. Later, we needed to take him to the Bureau of Motor Vehicles to obtain an identification card. I was actually relieved that we were not taking him to get a driver’s license; he lacks the motor coordination needed to drive a car. After gathering various documents to prove Alex is who we say he is, the woman who processed his ID card request was very kind and patient as he signed the various documents in his barely legible signature. The most difficult task was trying to take his photograph looking at the camera and not smiling, as required. He thought all of this was great fun and had trouble containing his joy while she took his picture. At the same time, we registered him to vote. Because Alex follows the news carefully and enjoys watching political shows, such as The McLaughlin Group, he probably knows and understands politics better than most people do. After the national identification clearinghouse determined that Alex was not a terrorist or a criminal practicing ID fraud, his identification card arrived in the mail, followed by his voter registration card a few weeks later. He was thrilled to receive both. While I approached Alex’s turning eighteen with some trepidation, he was pleased to be an adult, at least legally.

This summer, which has come midway between Alex’s eighteenth and nineteenth birthdays, has been his best ever. Because he has matured and improved his behavior, he has been able to go many places throughout the summer months. While he had only two requests for where he’d like to go this summer—to the doctor and to the outlet mall, we have additionally taken him to various stores and the county fair, as well as to several restaurants on a regular basis. Considering he was basically under our imposed house arrest for a while, due to his unpredictable and sometimes aggressive behavior, this change is a huge improvement. Not only does Alex behave himself in public, but he is also very sweet and pleasant company. As Ed often tells him, “We like taking you places because you’re fun.” For the first time in many years, we can do things typical families do, and we savor every moment of these commonplace yet special times. Mostly, we feel blessed, and I’m thankful that my friend’s prediction has come true: I really like Alex now that he’s eighteen.

“When I was a child, I talked like a child, I thought like a child, I reasoned like a child; now that I have become a man, I am done with childish ways and have put them aside.” I Corinthians 13:11

Transport

Alex has always loved going places, and he can be ready at almost a moment’s notice to get in the car and go somewhere. When he was very small, he was content to ride in his stroller and take in the sights. I can vividly remember taking him to an outdoor arts and crafts festival when he was about eighteen months old, and he had a great time, just riding and looking around at everything. Wearing his tiny sunglasses and having one foot propped up on the edge of the stroller, he looked pretty relaxed. When he was a little older, he enjoyed riding in shopping carts and never complained about how long we spent shopping, nor did he ever ask for anything. As a reward for his good behavior, we’d take him to look at something he really liked—usually televisions or computers. Because he was happy and safe riding in shopping carts, I kept putting him in the cart, even when he was really too big to ride. Despite his long legs and my short stature, I could lift him into the cart with relative ease. Once, an older gentleman watched me maneuvering Alex into a shopping cart and observed, “Honey, he ought to be putting YOU in the cart instead of the other way around!”

After Alex was too big to ride in strollers or shopping carts, we had more difficulty taking him places. Probably overwhelmed by all the sensory stimuli in public places, Alex seems to lack awareness sometimes of other people and could likely run into them. In addition, we are still training him to watch for cars when crossing parking lots because he often acts oblivious to their presence and the danger they potentially pose to him. We have also worried at times that he might dart off to look at something he really wanted to see. Currently, he has a fascination with thermometers in freezer and refrigerator cases at the grocery store; we’ll catch him tilting his head to see what the temperature is in the cold cases. With his long legs, Alex can walk quite rapidly, and keeping up with him is no easy task. Our greatest fear in taking him public places is that he will somehow get hurt, which often leads to a meltdown. Therefore, we must protect him diligently when we are out to avoid his becoming upset and causing a scene.

A few years ago, Ed was briefly hospitalized, and my parents and I had to walk around the hospital with Alex. My mom noticed wheelchairs parked in the hallways, which gave her a brilliant idea of how we could transport Alex in public places. She and I brainstormed—as we often do—about the pros and cons of getting Alex a wheelchair. While I was concerned a wheelchair would be too heavy and expensive, I was most worried that Alex could catch his fingers in the spokes of the large wheels. I remembered seeing a wheelchair used at our school for students who were injured that was lighter weight, portable, and had small wheels. After some Internet searching, I discovered these wheelchairs were known as transport chairs, and this seemed to be a perfect solution. That week Walgreens happened to have a sale on transport chairs, and we bought Alex a red one (his favorite color) for around $100, which was a good investment. Now we can take him crowded places, such as Walmart or the county fair, by pushing him in his transport chair. We know that Alex is safe and happy riding along in his chair, just as he was content when he was little and enjoyed the stroller or shopping cart as his primary means of transport.

“For in Him we live and move and exist. As some of your own poets have said, ‘We are His offspring.’” Acts 17:28