Sunday, November 28, 2010

Recommended Reading

Since Alex was diagnosed with autism nearly fifteen years ago, I have read hundreds of articles and dozens of books about autism, trying to understand how this condition affects him and how we can help him overcome the challenges he faces. In addition, I have bought many books on autism for reference, and my family room bookshelves are filled with medical books, psychological texts, and parent memoirs, all focusing upon how autism impacts daily life. One of the blessings of having been an English major as an undergraduate and graduate student is that I learned to read very quickly out of necessity. Moreover, I had excellent teachers who developed critical thinking, research, and communication skills, which helped me learn to assimilate what I’ve read into what I already know to give it meaning and context. While I don’t have Alex’s photographic memory, I can remember the gist of what I’ve read. Like Alex, I can quickly find information I need, whether by using the index of a book or a Google search on the Internet. Just as his research skills have enabled him to learn more about pi, meteorology, and astronomy, mine have led me to interesting discoveries about autism that have made our lives better. Of the many excellent books I’ve read, six stand out as especially important and useful. I often recommend these titles to other parents of children with autism, and I pull my own copies of these books from the bookshelf frequently for reference.

Recently, a friend asked me about how to help her child with sensory integration disorders, and I immediately recommended The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction by Carol Stock Kranowitz, a teacher who worked with children with sensory issues for many years. This book not only clearly explains why some children react as they do to sensory issues, but also offers many helpful and practical ideas and suggestions about how to help children deal with these problems, which often affect children with autism. Another excellent book written by a professional who has worked with children with autism is Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies—The Groundbreaking Program for the 4-A Disorders by Kenneth Bock, M.D. and Cameron Stauth. Dr. Bock does a wonderful job of detailing the increased incidence of these childhood conditions, the possible links between them, and ways to manage them through nutrition and diet, supplements, detoxification, and medication. Since we have taken the biomedical approach to dealing with Alex’s autism, Dr. Bock’s book reinforced our commitment to making Alex healthier through the gluten-free and casein-free diet, nutritional supplements, chelation of heavy metal toxins, anti-fungals, and Prozac. Dr. Bock’s book is not only thorough in its explanation of these childhood conditions and the ways to treat them, but the writing is also very readable and interesting. Of all the medical books I have, Biological Treatments for Autism and PDD by William Shaw, Ph.D. is the most dog-eared and highlighted text. Moreover, I have probably read this book more times than any other autism book I own because it offers a wealth of information about the medical issues related to autism. Dr. Shaw, a biochemist who founded the Great Plains Laboratory, has extensively researched autism and the aberrant lab test results children with autism often display. (Once when I called the Great Plains Laboratory to ask a question about Alex’s results, I got to speak directly with Dr. Shaw. I probably sounded like a groupie as I enthusiastically told him I’d read his book many times.) After running various hair, stool, urine, and blood tests on Alex through the years, we discovered that he, too, showed unusual results that needed to be addressed to improve his health, which ultimately improved his behavior, as well. Like Dr. Bock, Dr. Shaw takes a biomedical approach to autism, explaining the benefits of diet, chelation, supplements and medication. While Dr. Shaw’s writing style is not as easy to read as Dr. Bock’s because of the technical nature of his topics, his book is worth the effort, for all of the information he presents offers hope and healing for children on the autism spectrum.

While the books written by professionals have been helpful, I especially like books written by parents of children with autism. Karyn Seroussi, the mother of a child with autism, wrote one of my favorites, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery. Not only does she describe her experiences parenting a child with autism, but she clearly summarizes the biomedical research she discovered that helped her son improve. In addition, she shares helpful tips that she learned along the way. Every parent who has a child with autism should own a copy of this book for reference. Another book written by a parent that I highly recommend is Beth Kephart’s A Slant of Sun: One Child’s Courage, a beautifully written memoir about her son with an autism spectrum disorder. Throughout the book, she describes her experiences in such vivid detail that she allows the reader a true glimpse of what her life is like, and I identified with her as a mother, especially when she notes: “In these years as Jeremy’s mother, I have learned how to be wary—how to go out into crowds a perpetual two steps ahead so as to reconnoiter, assess the risks, and steer a sheltered path.” As I described in another blog entry, “Remembering the Roses,” much of my life involves clearing paths—literal and figurative—for Alex so that he doesn’t stumble along the way. While most memoirs about children with autism are written by mothers, I am especially fond of one written by a father. Running with Walker: A Memoir by Robert Hughes is a candid account of life with his son who has autism. Despite all the challenges Walker faces, his father maintains a sense of hope and finds humor in the unusual circumstances autism often presents. I believe that the best books are those that make us laugh and cry, and Running with Walker moved me to both tears and laughter through its honest look at life with autism. Having celebrated Thanksgiving this week, I am thankful to those professionals and parents who have shared their knowledge, experience, and lives through their writing so that others can understand and help those children we love with autism.

“Wise words come from the lips of people with understanding…” Proverbs 10:13

Wednesday, November 24, 2010

Thanksgiving Praise

Every morning when I wake, every night before I go to sleep, and several times throughout the day, I count my blessings. While raising a child with autism is often overwhelming—even to the point that recent research shows that parents of children with autism display symptoms of post-traumatic stress similar to those experienced by soldiers returning from war—my daily routine of trying to focus on praise instead of problems has been therapeutic and has helped put our lives into perspective. As we celebrate Thanksgiving tomorrow, I count our many blessings.

•Other than issues related to his autism, Alex is remarkably healthy. Thankfully, he has never been to the hospital since he was born, has never been very sick, and has never even had a cavity. I’m also especially grateful that Ed and I are very healthy so that we can be at our best to take care of Alex.

•Alex has always had a good appetite and been willing to eat a variety of food. Since he must avoid glutens (most grains) and caseins (all milk products), his diet could be quite limited were he not willing to eat most vegetables, fruits, meats, and rice in various forms, including rice milk, rice flour baked goods, and rice pasta. In addition, we are fortunate to have a nearby health food store and a grocery store that carry gluten-free and casein-free foods that he enjoys.

•Although raising a child with autism can be expensive, particularly when insurance will not cover certain therapies, we have never had financial worries, which is a great blessing. Whatever Alex needed, we had the money to pay for it. In addition, Ed and I are fortunate to have jobs that allow one or the other or both of us to be home with him at all times. This has permitted us to home school him throughout his education, and we feel he has benefited from one-on-one instruction tailored to meet his needs.

•Every time I hear Alex flush the toilet, I am thankful. After years of toilet training him, we began to wonder if he’d ever toilet independently. The relief in knowing that he can manage this basic task of staying clean and dry round the clock on his own, along with the time I save in clean-up and doing laundry, always makes me happy.

•Even though he sometimes drives us crazy telling us things repeatedly, we appreciate that Alex can speak and tell us what he’s thinking and feeling. Often his comments entertain us with his unique perspective. Nothing is sweeter than hearing him tell me every night before he goes to bed, “Love you.”

•Despite his motor delays and language difficulties, Alex’s phenomenal self-taught abilities to read and use the computer have helped him to learn and entertain himself through the years. In addition, the Internet has provided a means for me to connect with other parents of children with autism as well as to easily research ways to help Alex get better. While autism tends to isolate, the Internet connects us with people around the world, as I’ve discovered more recently by writing this blog. I’m thankful to all those who have supported me in writing “One Autism Mom’s Notes”; I truly appreciate the encouragement.

•The expertise and understanding of special professionals who have worked with Alex have helped him tremendously. His wonderful doctor has worked with us, often using somewhat unconventional approaches to make Alex healthier, and his pediatric dentists along with their kind hygienists not only have kept his teeth healthy but also have made him enjoy going for regular visits. His occupational therapist and private speech therapist helped him overcome early developmental delays with their patience and encouragement, and his current music therapist does a fantastic job of improving Alex’s language and social skills. Moreover, I like that he calls Alex “Dude” and “Big Guy”; he is exactly the right person to work with Alex at this point in his development.

•Music—whether it be pop, rock, country, or his beloved jazz—always makes Alex happy and content. When Alex is happy and content, we are, too.

•I’ve been told that God never gives us more than we can handle, but I’ve wondered at times if God overestimated me when He gave me a child with autism. Nonetheless, through the trials and the triumphs, He’s walked with us and guided our paths. Through it all, I’ve learned to trust God and developed a faith I never would have, had it not been for the testing. As Pastor Joel Osteen often says, “God has you in the palm of His hand,” which reminds me that I’m always in a good place, even when things around me seem to be difficult.

•Along with my faith, my greatest blessing in life has been my loved ones—the family and friends who have supported us, prayed for us, sympathized with us, and rejoiced with us. Although they didn’t always know exactly what our life entailed, we felt their love, which gave us strength. I could not have asked for a better husband than Ed, who loves and supports me through everything, and more importantly, has become the perfect father for Alex with his compassion and patience. Finally, Alex is not only my beloved only child but also the one God sent to teach me the really important lessons of life: faith, hope, and love. I am truly blessed!

“Give thanks to the Lord, for He is good! His faithful love endures forever.” Psalm 136:1

Sunday, November 21, 2010

Tests of Patience

Most of the time, Alex is remarkably patient. Perhaps because he has had developmental delays, he doesn’t worry too much about waiting for things to happen, and he trusts that eventually they will occur. In fact, he’s often more patient than Ed and I are. For example, whenever we have to sit in a waiting room at the doctor or dentist, Alex never seems to mind passing the time until it’s his turn. While Ed and I check our watches, look around to see how many patients are ahead of us, and exchange looks during the wait, Alex smiles because he’s just happy to be there. Recently we took him to see American Idol winner Kris Allen in concert, and we were concerned that he would have difficulty sitting still through the opening act. As we sometimes do, we underestimated his willingness to wait for the main event. Alex’s good nature and patience were rewarded when he got to see Kris Allen, a singer whose music he enjoys. Last week, however, Alex encountered two situations that tested his patience, which meant our patience was tested, as well.

As I mentioned in my previous blog entry “Teaching Chores,” Alex has become very helpful at the grocery store, where he adeptly maneuvers the shopping cart through the aisles. On Tuesday, Ed took Alex with him to get groceries, and Alex happily pushed the cart while they shopped. Unfortunately, the store was quite crowded, and all of the checkout lines were very long. After waiting for several minutes in line, they were nearly to the cash register when the computer stopped working. The cashier tried to reboot the computer a few times but was unsuccessful, which meant that all the people waiting in her line now had to go to the end of another line. As Ed told me, most people were grumbling about having to wait already and then were even more annoyed to have their wait extended due to technical difficulties. However, Alex remained good natured, smiling all the while he waited. Even as they moved to another line, Alex seemed unfazed by the delay. However, after having been in line for about a half hour total, Alex suddenly informed Ed, “I don’t want to wait any longer.” Apparently, Alex’s patience does have limits. Uncertain as to whether Alex might have a meltdown, Ed took the wise course, guiding Alex and the cart out of the checkout line, putting the cart aside, and taking him out of the store. Fortunately, Ed’s quick movement eased Alex’s upset about having to wait, and a potentially bad situation was avoided in public. Probably many people waiting in those checkout lines felt the same frustration that Alex did; he could only be pleasant for so long before knowing that he’d had enough. At least he calmly verbalized his concerns instead of physically showing his irritation over the situation.

Last weekend, Alex decided that he wanted to get an electronic toy that would alter his voice. He’s been reading about puberty and how boys’ voices change, which is likely behind his interest in this voice changer toy. After searching online at Amazon, he found one that he thought was wonderful because it had four voices: robot, old man, boy, and kid. He was really only interested in the boy and kid voices, and he thought this device was a bargain at $9.99. I helped him order the voice changer with a gift card he had saved, and now he had another wait on his hands. The predicted delivery date was between Thursday and the following Monday. Of course, he wanted me to track the package several times a day to see where his voice changer was. Unfortunately, the package was not shipped until Wednesday, so he had a few anxious days, wondering when they would ship it. Then, they set a shipping arrival date of Friday by 8 P.M., which meant that all he could think and talk about on Friday was the delivery of that package. As each hour passed, he became more agitated, waiting for the toy to arrive. However, the promised delivery date was inaccurate, and he was not pleased that he would have to wait at least another day once he realized that he would not be getting the voice changer on Friday. Ed and I were concerned that we’d have to watch him pace and mutter about the voice changer all weekend because we weren’t certain if the shipping company delivered on Saturday. All three of us were running out of patience, heightened by Alex’s anxiety because he had been certain that he would receive the voice changer by Friday, as the shipping company had promised. Thankfully, the package finally arrived on Saturday morning. I’m not certain that any of the three of us would have had the patience to deal with Alex’s frustration had it not arrived then. Although we’re pleased that Alex is patient most of the time, his recent indications that his patience does, indeed, have limits reveals that he is making progress and may be more typical than we think. Perhaps he's just learned that the line from the Tom Petty song is true: "The waiting is the hardest part."

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that He has promised.” Hebrews 10:36

Wednesday, November 17, 2010

Teaching Chores

As parents, one of the most valuable things that we teach our children is how to do chores around the house. As a teacher, I’m surprised by the number of students who claim that they don’t know how to do basic tasks because they don’t have to do any chores around the house. Often they’ll tell me that they don’t have to do anything at home because their family has a cleaning woman who does most of the work for them. While having hired help clean the house is an asset to working women, I wonder how those children will learn to clean, do laundry, and other basic skills, should they ever have to do so. With Alex, teaching him household chores has been a chore in itself at times because his dyspraxia, or poor motor planning skills, combined with his weak fine motor skills makes many tasks more difficult for him. In addition, when he has been temperamental, we did not want to push him to do things that might heighten his frustration and lead to his hurling things in anger. Lately, however, he has been more willing and able to do some simple chores around the house, even though he still requires some supervision and instruction from us.

Generally, Ed is much better at teaching Alex how to do chores than I am. My perfectionist nature makes me want tasks done the way I want them done, but I know that Alex needs to learn how to do things his way. On the other hand, Ed’s more laid-back personality rolls better with objects being placed near their actual targets. For example, Ed taught Alex how to set the table this summer, and so long as the silverware was near the plates, it didn’t matter to him that the fork should be on the left. Of course, in the scheme of things, the placement of the table setting really didn’t matter since we weren’t throwing a formal dinner party. Moreover, the pride Alex took in setting the table all by himself was much more important than how the table looked once he was done. With repeated practice, Alex became much better at setting the table, and now he places everything pretty much where it belongs. Ed has also recently involved Alex with the weekly taking of the garbage and recycling bins to the curb. Patiently, Ed helps Alex move the bins from the garage to where they will be emptied by the street department. Watching Alex carry the recycling bins or pull the garbage can on wheels is heartwarming because he has a big smile on his face and seems proud to be doing this job. I doubt that most teenagers are pleased to be reminded that it’s time to take out the trash, yet Alex is not only willing but eager to do it for us. In addition, Ed has worked with Alex on how to vacuum; considering that Alex used to be terrified of the vacuum cleaner, this is a sign of great progress on his part. Perhaps the most helpful task Alex has learned recently is how to push the cart when grocery shopping. For someone who often appears oblivious to his surroundings, he does an excellent job of moving the cart smoothly and safely through the store aisles with minimal guidance. Moreover, like other tasks we’ve asked him to do, he seems to think this is fun, happily obliging us when we ask him to do it and smiling all the while he pushes the cart through the store.

In teaching Alex basic tasks, we always have to remember that he learns better by seeing than by hearing. When we give him verbal directions, he seems at times to have trouble processing what we want him to do. For instance, when I have him help me sort laundry to be washed, he has difficulty keeping track of which baskets are for darks, lights, and whites. I could tell him repeatedly which basket was which and identify each laundry item as dark, light, or white, but he gets confused about where to place them. Therefore, I have learned to point to the proper basket as I tell him what category the item he is holding belongs to, and he can sort the clothes and towels with the added visual cue. Similarly, he often has trouble putting things away because he doesn’t process the verbal directions well about where things belong. To illustrate, his sunglasses are kept in a basket on top of our kitchen microwave, and yet he puts them instead on the kitchen table or the counter—in the vicinity, but not in the actual spot. He can process they go on a surface in the kitchen, but he can’t put them in the exact spot without several cues. Similarly, putting away his toys, games, and books requires a step-by-step process to get them to their assigned places, such as: upstairs, in Alex’s room, in the closet, in the blue basket. If these steps are not specified for him one at a time, his belongings may wind up at the top of the stairs, on the floor of his room, or with the closet door open and the object sitting in front of the closet. I truly believe that he’s not trying to be difficult about putting away his things; he really can’t understand the process unless we divide it into more manageable parts. Nonetheless, we are proud of the progress he has made at learning to do chores around the house, and we’re even prouder that he does what work he can with such a positive attitude and a pride in himself for being able to do these tasks.

“So I saw that there is nothing better for people than to be happy in their work. That is why we are here!” Ecclesiastes 3:22

Sunday, November 14, 2010

Time Change

As usual, last week’s time change from Daylight Savings Time to Standard Time adversely affected Alex a bit. When he was younger, he often had trouble adjusting his sleep for a few days when the clocks changed. Now, his sleep patterns don’t seem to vary, but some subtle mood changes suggest that his circadian rhythms have been disturbed by the one-hour difference. Although he knows how to change every clock in the house and enjoys turning them ahead or back an hour as needed, he requires a few days to adjust. This past week, he has been disgruntled at times, muttering his concerns. Since he is usually good-natured and congenial, this change in personality indicates that something has disrupted his system. Whenever he is in a grouchy mood, we take the advice given in Kenny Rogers’ country song “The Gambler”: “Know when to hold ‘em, know when to fold ‘em, know when to walk away, and know when to run.” To explain, sometimes we reassure Alex that his fears are unfounded, or we distract him by talking about something other than his obsessions, or we just ignore him, or occasionally, we get out of his way because he’s likely to have a meltdown.

Currently, Alex seems to have three primary preoccupations. First, he’s very concerned about when his doctor will retire. Since she has been his doctor for more than a dozen years and has been very good to him, he has a bond with her that he worries will end soon. He knows that she’s about the same age as my parents, both of whom are retired, and he assumes that she will also retire shortly, even though she has indicated that she has no imminent plans to do so. Despite our telling Alex repeatedly that she’s not planning to retire yet, he still frets about her and keeps asking when she will retire. I think Ed was finally able to ease Alex’s anxiety about that issue a few days ago when he told Alex that after his doctor retires, he can go to the same doctor Ed does. Of course, Alex wanted to know right away how old Ed’s doctor was; I guess he wasn’t too eager to go to someone else who might be planning to retire shortly. This interest in ages has also affected his current reading material as he has been researching child development. He has been selecting books from the library about babies, then preschoolers, followed by elementary-aged children, and now he is reading books about adolescents. I’m not certain how much understanding Alex has of his own development as a child because of his delays, and I wonder if he’s trying to recapture those days that may have been confusing to him. In addition, whenever he sees children on television, in books, or out in public, he asks us how old we think they are. As I had mentioned in my earlier blog “Rating,” Alex needs to quantify everybody by statistics, age being one of the most important to him. With the holiday season approaching and all the commercials and ads for toys depicting children, we hope that Alex overcomes this current obsession with little kids and how old they might be.

Besides potential retirements and little kids, Alex has current concerns about his memory. Even though he seems to have a photographic memory and has memorized many sequences of numbers, such as dozens of prime numbers and hundreds of digits of pi, he worries that he will forget something. Again, I suspect that he’s trying to remember his childhood. Fortunately, looking at photographs of himself at younger ages seems to soothe his anxiety. Another issue that he has recently raised is that he is certain that he erased data he had stored on his graphing calculator and worries that he’ll never be able to regain those lost numbers. Despite our reassurances, the thought of losing information makes Alex extremely agitated and upset. In addition, he worries that his memory isn’t what it once was, much as an elderly person might; however, Alex isn’t even nineteen yet. He has repeatedly asked us if he has a good memory, and we have been able to give him several examples—including the pi digits—that prove his memory is not just good, but phenomenal. The other day, he decided to take a new approach to this question, comparing himself to his two-year-old cousin and asking if he had a better memory than Casey. He worries that Casey won’t remember his early childhood because Alex can’t remember much about his own life before the age of four. I suppose he thought that comparing himself to his little cousin would be an easy way to make sure that he has the better memory. Plus, he likes that he knows exactly how old Casey is, which comforts him. Now, if he starts asking when Casey will retire, then we’ll have another issue on our hands…

“Yet God has made everything beautiful in its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.” Ecclesiastes 3:11

Wednesday, November 10, 2010


One of my favorite college professors once remarked that sometimes good intentions are not enough. Last week’s Communication Shutdown, which encouraged people not to use Twitter or Facebook for one day, was an example of how good intentions may not always be enough. Sponsored by several autism groups around the world, including the National Autism Association, the idea behind this social network blackout day was to make people realize how difficult communication is for those with autism. Moreover, two goals of this effort were to raise funds and to increase awareness for autism, both of which I heartily applaud and greatly appreciate. However, I read several comments and blogs from adults on the autism spectrum who noted that refraining from using online communication posed a significant hardship because the Internet allows them to socialize comfortably. Having raised a child with autism for nearly nineteen years, I believe that silence is not the answer when it comes to making people aware of the challenges autism presents. Rather, we need to shout from the rooftops how this autism epidemic has gone from 1 in 10,000 children to 1 in 91 children in a reasonably short period of time, and yet significant progress is not being made as to how to help these children. Limiting access on the Internet no more makes one aware of what it is like to struggle with the communication issues autism presents than driving a car fast makes one a NASCAR driver. Consequently, I opted not to participate in Communication Shutdown Day and continued to keep contact with my Facebook friends, several of whom are fellow autism moms.

As a parent of a special needs child, when I have read about disability awareness activities at schools, I have found them condescending and even offensive. Often the newspaper depicts healthy, typical teenagers riding in wheelchairs, having their eyes blindfolded, and/or wearing headphones to simulate mobility issues, blindness, and hearing impairment. Usually, the teenagers participating in these activities are smiling and laughing, seeing the experience as fun. However, having a disability is neither fun nor funny. Certainly, many individuals with disabilities learn to overcome the issues that make their lives challenging and often do so with positive attitudes. Nonetheless, pretending to have special needs for a few hours does not make one truly aware of what living with a disability entails, nor does it create empathy toward students who are different, in my opinion. If schools and organizations really want to make students aware and sympathetic toward those with disabilities, they should instead invite speakers to talk with the students about what life with a disability is truly like. For example, they should know that their sharpening pencils and erasing errors on paper sound much louder to a fellow student with sensory issues; perhaps fingernails scratched on a chalkboard would make them appreciate how this feels. Similarly, the blinking of fluorescent lights may be imperceptible to them, but for a child with autism, the flashing may be like that of a strobe light, complete with a buzzing noise. I could tell of how I watched Alex as a preschooler desperately trying to tell me something but was unable to find the words, his mouth open in a soundless cry as his eyes and mine filled with tears of helplessness. Of course, riding around in a wheelchair one doesn’t really need probably appeals more to most teens than any of my suggestions would.

Certainly we need to give those with autism a voice. Temple Grandin and other adults with autism who have shared their experiences have provided valuable resources so that others can understand how these unique minds function. We feel blessed that Alex, unlike many children with autism, can verbalize what he’s thinking and feeling so that we have a glimpse of what is going on in his mind. Other children with autism cannot tell others when they are scared, in pain, or angry; only their cries can suggest their distress. Until our children with autism can express their needs, we parents must advocate for them, to be their voices until they can speak. The Internet provides the perfect vehicle to share our voices, to tell others what life with autism is and is not. Until Alex can tell his own story—and someday I believe he will—we will keep telling it for him so that others can understand the challenges he has faced and the triumphs he has experienced as he has overcome the obstacles autism put in his path.

“Listen to my voice in the morning, Lord. Each morning I bring my requests to you and wait expectantly.” Psalm 5:3

Sunday, November 7, 2010


Last week, Alex marked another milestone by participating in his first political election. Although he was old enough to vote in the Indiana state primary election in May, I had not assembled his paperwork in time for him to vote then. In Indiana, voters are required to provide official photo identification documents before voting to prevent voter fraud. Since Alex doesn’t have a driver’s license, we needed to get him an official state identification card instead. As I described in my earlier blog entry “Transitions,” this experience at the Bureau of Motor Vehicles in June went much more smoothly than we would have anticipated, primarily because the woman who worked with Alex was amazingly patient and understanding and because Alex was remarkably cooperative. In addition, I had spent time online beforehand, making sure we had all the required paperwork to prove that Alex was neither a terrorist nor an identity thief: birth certificate and Social Security card to verify his identity, along with a doctor’s bill and a bank statement reporting the value of his stocks to confirm his address. The only difficulty in getting the official state identification card was keeping him from smiling and showing his teeth—as required by law—in the photograph they took. Consequently, his photograph, like most people’s driver’s license pictures, is not terribly flattering. In fact, he looks somewhat like a thug. Nonetheless, he now has the identification needed to vote, and we also had him register to vote while we were at the BMV.

After receiving Alex’s voter registration card in the mail, we then needed to apply for an absentee ballot. Again, information available online made this task much simpler. Ed and I were uncertain how Alex would deal with voting in our regular polling place and decided that he would handle voting at home much better because he could take his time making his choices and not be distracted by other people and strange surroundings. Since disability is one of the valid reasons for requesting an absentee ballot, he used this option. After submitting the form to request an absentee ballot, a few weeks later he received his official ballot along with instructions and the envelope to mail it. Unlike many people who take voting for granted or simply choose not to participate in elections, Alex was excited about this opportunity to exercise his right as an adult and carefully considered his choices before submitting his ballot. In addition, Alex follows the news, and through his study of American history, he has a good grasp of the political process. Even though he doesn’t pay taxes other than sales tax, he strongly supports candidates who share his belief in the need for lower taxes. Because he values money and is a good shopper who looks for the best deal, his concern for saving money is really not surprising. In addition, Alex spends a great deal of time listening to conversations that Ed and I have about politics and likely has formed opinions based upon what he’s heard us discussing that influenced his decisions. With great seriousness of purpose, Alex made his choices, mailed his ballot, and became part of the American electorate.

Eagerly anticipating Election Day last week, Alex spent the entire evening watching the election results on the news stations and waited to see how his candidates ranked. As though he were viewing an exciting sports event, he had a contented grin and would occasionally stand up and clap while he watched the results. Because most of his candidates—local, state, and national—fared well, he felt proud to have supported these successful candidates. Just as Alex felt pride in casting his ballot, we felt pride that he took his responsibility seriously and was actively engaged in the election process. Moreover, we felt grateful that despite autism’s attempts to silence Alex, he was able to make his voice heard through his vote.

“Now He is far above any ruler or authority or power or leader or anything else—not only in this world but also in the world to come.” Ephesians 1:21

Wednesday, November 3, 2010


During the last few weeks of my pregnancy with Alex, he had hiccups every day about the same time mid-morning and around ten o’clock at night. The first few times I experienced these subtle yet rhythmic movements, they startled me. Once I realized the source of the little ripples in my abdomen was simply Alex’s diaphragm in spasms, these twice-daily occurrences were something I learned to anticipate, and I would find myself waiting for the next session to happen. After Alex was born, he continued his hiccups schedule of mid-morning and late evening, and again I found myself watching and waiting for the next time the hiccups would occur. Over time, the daily hiccups disappeared, no longer part of a regular pattern. When Alex was older, we would give him a spoonful of sugar to make his hiccups disappear. As with anything out of the ordinary, he likes to know that there is a solution to the problem, and with hiccups, he knew to come ask for some sugar. Rarely, he would need a second dose of sugar to remedy his hiccups, but they always went away fairly quickly.

During Alex’s difficult adolescent years, he had meltdowns nearly every day and sometimes more than once a day. Like the hiccups he had shortly before and after his birth, we learned to anticipate these uprisings and waited for them to erupt. Over time, with maturation and some tweaking of his nutritional supplements, Alex’s meltdowns gradually became less prevalent, much to our relief. Things that once set him off, such as people coughing or the cable television going out, no longer would send him into tailspin mode. Even when he did become agitated, we could usually talk him down from his anxious state and prevent the anger and upset from turning into agitation and aggression. (As Ed and I always rate a “good” meltdown: “Nothing got broken, nobody got hurt.”) After going for several months without any real meltdowns, we had hoped that maybe Alex had finally and completely outgrown this stage. Recently, Ed and I compared the scars on our hands, remnants of where angry Alex clawed us with his own hands, and we noted that the marks remind us how thankful we are to have overcome those difficult days. My parents have again offered to stay with Alex as they did when he was little so that Ed and I could go out to dinner alone, something we haven’t done in many years because at least one of us needed to be with Alex in case he became agitated. With each month that passed without any incidents, we were enjoying a life of relative normalcy, and we felt blessed for this respite from the most difficult aspect of Alex’s autism.

Like those hiccups, however, the anxiety arises when we often least expect it. Last week, after months without any meltdowns, Alex became upset and threw a huge fit, complete with physical aggression. Ranting for no apparent reason about how he never wanted to use his graphing calculator again, he began hitting and clawing us to make his point, despite our reassurances and a dose of the sedative Ativan. He seemed to calm down a little, but then he began yelling and striking again, this time with a crazed look in his eyes and spitting at us to make his point, as well. After two more doses of Ativan, he finally settled down and returned to his gentle self, sleepy from the sedative and the meltdown. After he fell asleep, Ed and I did our traditional post-meltdown de-briefing, trying to figure out what had set off the fit and if we could have done anything better in handling it. Convinced that we had dealt with him as well as could be expected, we began thinking about what was different that might have agitated him. That evening, we had gone to a new restaurant, and we began analyzing what Alex had eaten that might have been a trigger for his behavior. We concluded that the potatoes he’d eaten likely had wheat flour in the sauce, and since Alex has been on a gluten-free diet for more than ten years, his system doesn’t likely tolerate glutens well. Although we were somewhat shaken by the experience, we were relieved that he did settle down, we had worked together to overcome the behavior, and we probably had identified the source of the problem through our detective work. Since we suspect a dietary infraction was the culprit, our commitment to keeping his diet gluten-free remains strong. Alex’s meltdown last week also made us appreciate how much his behavior has improved over the past several months because this was a rare event instead of a daily one. Nonetheless, while we enjoy the good behavior he exhibits the majority of the time, we stand on guard, waiting for those possible hiccups in life that challenge us and keep us praying for a total healing of Alex.

“From six calamities He will rescue you; in seven no harm will befall you." Job 5:19