Awareness

This Friday, April 1st, begins Autism Awareness Month, and the following day is World Autism Awareness Day. Around the Internet, autism organizations have been busily promoting events planned for the month of April to make people aware of the epidemic of autism. Brightly colored autism ribbons displaying the familiar puzzle pieces to represent the puzzle of autism and t-shirts bearing various logos and sayings, such as, “I love someone with autism,” serve to remind people that autism is a serious concern in our society. One of the largest autism organizations, Autism Speaks, has planned an event called “Light It Up Blue” in which they request the use of blue outdoor lights on April 2nd to commemorate World Autism Awareness Day. While they had hoped the White House would participate in this event, the President’s home will apparently not be lit in blue, but the Empire State Building in New York City will mark the occasion and be illuminated in blue lights on this night.

So how does one make others aware if their lives have not been directly touched by a child with autism? Will anyone other than parents and family members of children with autism know what the blue lights on April 2nd mean? This weekend we will not be using blue outdoor lights at our house, not because we don’t support autism awareness, but because Alex despises blue lights, as he has told us repeatedly during the Christmas season when we drive past houses decorated in blue lights, describing them as “ugly” and telling us, “Don’t like blue lights!” Perhaps a better way to inform people about autism is through the media where words can explain what symbolic gestures, such as blue lights, cannot. Last week parents of children with autism launched a written attack on Parents magazine because their April issue did not recognize Autism Awareness Month. After several angry parents posted on the Parents magazine Facebook page threatening to cancel their subscriptions and decrying that the editors were ignoring special needs children, the magazine tried to defend themselves by saying that they had a feature on bed tents for children with autism, and they requested that parents of children submit brief stories about their lives to be published on their web blog. However, some parents felt that this olive branch was a case of “too little, too late” and demonstrated that autism moms and dads will not be silenced, especially if their children have been silenced by autism. Similarly, one look at some of the various autism messages conveyed on t-shirts reveals an angry attitude reminiscent of Robert De Niro’s character, Travis Bickle, in the movie Taxi Driver: “You lookin’ at me?!” With such messages as, “I have autism. What’s your excuse?” and “Hey, keep staring at me and you just might cure my autism. Then we can work on YOUR social skills,” the t-shirts suggest a frustration toward those who don’t understand the behaviors people with autism may display. Last spring, as I searched for an autism awareness shirt, I pored over the various sayings, amused by some and a little surprised by others, and finally found the tone I wanted in the following message: “Autism Awareness—Hope, Faith, Love.” In fact, I liked this message so much, I not only bought the t-shirt but also a tote bag and a button I wear every school day on my teacher identification lanyard. For me, autism awareness lasts not just a month, but 365 (or 366 in Leap Year, as Alex would remind me) days of the year.

My first experience with autism awareness came as a teenager in the late 1970’s when I saw a postmark on a letter that said something to the effect, “Support autism research.” While I don’t remember the exact wording, I do recall not knowing what autism was, and led by curiosity, grabbing a dictionary to find a definition that basically identified autism as an abnormal self-absorption that causes a lack of response to people and difficulty in communication. I remember thinking at the time how sad that must be for parents; now as a parent of a child with autism I know that definition fails to recognize that these children do respond to others, albeit in somewhat atypical ways. This misrepresentation continues today as I see Facebook ads that offer training for special education teachers with headlines such as “Teach Kids with Autism” accompanied by pictures of children hiding their faces or crying. Who would want to teach children who are constantly crying or hiding? I think of Alex, who is smiling the vast majority of the time, and I feel that children with autism are being shortchanged. When Alex was younger, I jokingly used to offer to loan him out to friends during Autism Awareness Month so that they could have a glimpse of what life with autism is really like. One friend half-kiddingly offered to take Alex for a Sunday afternoon during a NASCAR race, knowing that entertaining him that way would be fairly simple. What my friend didn’t realize was that if one of the Busch brothers, whom Alex has disliked for years, had won that race, another side of Alex’s personality would emerge, and a nice day watching sports on television might turn into a full-blown meltdown as Alex would have no trouble communicating his annoyance to everyone around him, contrary to the dictionary definition of autism. From living with Alex, what I have learned since my initial exposure to the word autism is that autism awareness means understanding the unpredictability of the life with autism and realizing that the child can and does communicate, just in different ways. Moreover, instead of just making people aware of autism, we parents need to make the world more tolerant of our children’s unusual behavior. Certainly, unless someone has lived with a child who has autism, he or she cannot completely understand how that condition impacts the lives of everyone in the family. Nonetheless, compassion toward those who are affected by autism instead of judgment makes life easier and helps those parents, like me, who strive to make our children better while holding onto three key concepts: hope, faith, and love.

“For I am always aware of Your unfailing love, and I have lived according to Your truth.” Psalm 26:3

Adventures

This week, Alex and I are on spring vacation. "Vacation" is really a misnomer because we aren’t actually going somewhere on vacation; perhaps spring break is a better explanation for our situation—we’re on a break from school. Since the university where Ed teaches always has its spring break the first two weeks of March, and the school district where I teach always has its spring vacation the last week of March, our schedules for spring break never coordinate. Not that this difference really matters because we don’t vacation in the traditional sense anyway. Certainly, we enjoy our time off from school, but we spend our time relaxing at home instead of on a beach or at a family fun park. With Alex’s potential to have meltdowns—although less frequent than when he was younger—and his restricted diet that requires planning, staying home makes more sense than trying to deal with issues in unfamiliar settings.

This spring break week, as my friends and colleagues are flying to far-flung places, such as Arizona, Florida, Las Vegas, Cancun, Colorado, and the Caribbean, I’ll be here in Indiana hoping for sunshine. Fortunately, I am a homebody by nature, so staying home never feels like a sacrifice to me. Interestingly, two of my friends who are mothers of teenagers confessed that they would rather stay home, too, instead of going on their family’s planned trips over spring vacation, especially considering all the work involved in packing and unpacking that a trip involves. What they were most looking forward to on their vacations was spending time with their kids, and I can do that at home with Alex more easily than anywhere else. In addition, we can avoid dealing with the rising costs of gasoline, which I fear may upset Alex at some point. A few years ago when gas prices were high, he would have a fit every time we passed a gas station and he saw how expensive gasoline was at the time. Expressing his frustration, he would either throw anything loose he could reach from the backseat (snow scrapers, his sunglasses, books, etc.) at the windshield, or he would slap one of us in the front seat to make his displeasure known. During this time, Ed and I mastered driving places while avoiding any gas stations to prevent provoking the wrath of our backseat driver. Before we went anyplace, we would plot routes ahead of time to make certain Alex would never see the high cost of gasoline, and we learned to take several scenic routes to avoid the dreaded gas stations. Thankfully, gas prices went down, and Alex got over that obsession, but we worry that behavior might return, should he be agitated by rising costs again. Of course, this problem makes travel with Alex difficult, if not impossible.

Fortunately, Alex has simple tastes, finding joy and adventure in everyday experiences that most people take for granted or even find annoying. To begin our spring break, we spontaneously decided the other afternoon to go shopping at Walmart, his favorite place, with my mom. Although most teenage boys would rather be caught dead than shopping at Walmart with their mothers and grandmothers, Alex had a high old time pushing the cart for us, and he patiently listened as we discussed the merits of various toilet bowl cleaners and which flavors of sugar-free Jello tasted best. After we were done with our shopping, we took him to his current favorite section of the store, office supplies, where he happily looked at calculators and label makers, never touching anything, just tilting his head to see their various features. (His previous favorite section of the store was pet food, where he searched for the big bags of dog food and wanted to see the ones that contained the most pounds of food.) With a bemused smile, he waited calmly in the checkout line as the woman in front of us had difficulty using her credit card. Since he had been so pleasant, we decided to take him to an even-bigger array of office supplies at Staples, where he was pleased to view a large display of one of his favorite things, calendars. Again, he never touched anything in the store, just walked along and browsed contentedly. To reward him for his good shopping behavior, we took him to one of his favorite restaurants, a 1950’s style diner that plays golden oldies he enjoys. Sitting in a corner booth we call the Bob Dylan booth because Dylan’s Nashville Skyline album hangs on the wall above it, Alex always smiles as the pictured Bob tips his hat to him as if in greeting. Downing three large Sprites, Alex grinned as he listened to our animated conversation, never interrupting once. Certainly others probably have more exotic experiences during their spring breaks, but I doubt they enjoyed themselves any more than the three generations of us did on that cold, sunny afternoon in Indiana, running around doing mundane things. After all, life is about whom you’re with, not where you are, and Alex has learned that truth early and appreciates those experiences, never feeling that he is somehow missing out on other adventures in life. His contentment brings joy to those around him and makes us feel proud to have raised such a wise young man.

“Enjoy what you have rather than desiring what you don’t have.” Ecclesiastes 6:9

Book Review 2

Although nearly all of the books I have read about autism are nonfiction, occasionally I find some interesting fiction that features characters with autism. A few weeks ago, as I was browsing through the bargain books at Barnes and Noble, I ran across Up High in the Trees by Kiara Brinkman, a novel whose main character, Sebby Lane, has autism. Sebby, an eight-year-old boy, also narrates the story, which makes the book especially intriguing because he shares his thought processes that often resemble free association. For example, he muses on his teacher’s name: “Ms. Lambert. Lamb like a soft, white lamb and Bert, like on Sesame Street. It’s a funny name to think about.” Like many children with autism, Sebby notices sensory details in depth: “The desk smells like scratchy blue cleaning powder.” In addition, he has difficulty interacting with peers; his only friend is a girl named Katya who recently came from Russia and knows limited English. Perhaps what is most endearing and enlightening about Sebby is how he reveals his thoughts and feelings regarding his dysfunctional family in letters to his teacher, Ms. Lambert. For example, he writes to her, “Mother is not here. She’s a picture in my head. She’s laughing with her eyes closed.” In another letter he tells Ms. Lambert, “I do like you and I like how your black and white chapstick smells.” Sebby seems to sense in his teacher a stability that his family lacks due to tragedy, and he reaches out to her for reassurance.

In a similar book I recently read, Mockingbird, author Kathryn Erskine’s main character has Asperger’s syndrome. My friend K.C. recommended this young adult novel, knowing that I would find the perspective of the narrator, fifth grader Caitlin, interesting. Like Sebby, Caitlin has difficulty making friends with her peers, but later in the book, she befriends a first grade boy named Michael, whom she feels a need to protect. Despite working with a school counselor to improve her social skills, Caitlin struggles with interpersonal communication. Throughout the book, she constantly reminds herself of the social lessons she has been taught, such as, “Look At The Person” and “Good remembering Your Manners.” Another issue she shares with Sebby is her sensory defensiveness, describing her aversion to bright lights, itchy clothes, and noise. Recess time is especially difficult for her because of the noisy chaos and the expectation for her to interact with other children, who reject her because of her unique behavior. Both novels realistically portray how typical children often respond to peers with autism; perhaps tolerance of special needs children should be emphasized more, especially when these children are frequently mainstreamed in regular education classes. Despite the obstacles both Sebby and Caitlin face, they each possess a strong spirit that allows them to deal with the problems they face, making them admirable, even heroic characters.

While I enjoyed both Up High in the Trees and Mockingbird, I found the authors’ choosing to place both Sebby and Caitlin in tragic circumstances unnecessary. As if dealing with autism and peer rejection were not difficult enough, both characters face tragic losses of their beloved family members who provide strong emotional support. Sebby’s devoted and understanding mother is killed by a hit-and-run driver while out jogging, and Caitlin’s protective older brother is killed in a school shooting incident. In addition, Caitlin’s mother has also died, leaving her with only a grief-stricken father who can barely function, let alone meet her special needs. Similarly, Sebby’s father struggles with his own grief to the point he can no longer care for himself or his children. Fortunately, Sebby’s older brother and sister help care for him, but they, too, deal with grief and cannot completely understand Sebby’s autism. Children with autism have enough interesting dimensions to their personalities that these characters should not need additional heartbreaking obstacles to face. Ironically, Sebby and Caitlin, despite their difficulties with social interaction, become the most sympathetic characters as they work through their own grief, worry about others, and attempt to comfort family members who continue to grieve. Perhaps this approach is what the authors intended to show--that children with autism can surprise people with their ability not only to feel emotions more deeply than might be expected, but also to express care and concern as they step outside themselves to help others. Nonetheless, I appreciate the effort both Kiara Brinkman and Kathryn Erskine make in their writing to show how the mind of a child with autism may work and to demonstrate how lovable, admirable, and amazingly resilient these children really are.

“And anyone who welcomes a little child like this on my behalf is welcoming me.” Matthew 18:5

Book Review

In an earlier blog entry “Recommended Reading,” I mentioned that some of my favorite books about autism are memoirs written by parents describing how autism has impacted their children and their family lives. Recently, I read a memoir published last summer entitled Dancing with Max: A Mother and Son Who Broke Free written by Emily Colson, who describes her life as a single parent raising a son with autism. Even though each child with autism is unique, I always find the similarities between Alex and other children with autism intriguing, and I enjoyed reading about some of the interests that Max and Alex share. In the book, Emily describes her son filling a toy shopping cart with items around the house, pretending that he is playing his favorite game show, Supermarket Sweep. Alex also loved that show, and we specifically bought him a toy grocery cart and plastic toy food so that he could play along with the show as he watched it every day. Another interest that Alex and Max share is their fascination with commercial refrigerators in stores. In the book, she writes that Max asks to “check out the refrigerators” when they go shopping, which sounds like something Alex would say, and I’ve often caught him tilting his head at odd angles, looking for the temperature settings in the refrigerators when we go grocery shopping. A similarity that Max’s mother and I share is our desire to make certain our sons are well-dressed so that they are appealing to others. In the book, she explains going through Max’s preschool clothes to give away to charity, noting, “I held the pint-sized khakis he wore on his first days of school, the beautiful sweaters I dressed him in after his diagnosis. These were clothes that whispered, ‘This is someone’s child. Take good care of him. He is cherished and deeply loved.’” Her explanation moved me to tears because I, too, wanted people to know that Alex was adored as I dressed him in attractive sweaters, nice pants, and penny loafers to go to special education preschool. I thought perhaps people would be kinder and more patient with him if he were well-dressed and immaculately groomed with every hair in place. We took great pride in Alex, and I wanted his appearance to reflect that pride.

Another issue Emily Colson describes skillfully in her memoir is how other people react to Max’s behaviors related to autism. Frantically struggling to make certain that she gets Max the help he needs, Emily battles with the school to obtain appropriate services and placement. When Max was six years old, she met with the classroom supervisor, who is neither sympathetic nor helpful. She describes this meeting as follows: “I watched as the supervisor rolled his eyes and spoke as if he’d never seen a child as unfortunately disabled as my son. And then he smirked as if it were pointless to help Max, a waste of time and resources.” Whenever I hear stories like that, I am thankful that we were able to home school Alex and not have to deal with such uncaring people. In another heartbreaking story, she relates an incident in which she and Max are watching young boys leaping off a bridge into water. Noticing that one handsome, well-dressed boy about twelve years old keeps looking over at them, she wonders if Max might have been like him, had it not been for autism. Suddenly, the other boy begins screaming at his friends, not caring that Max can hear his insults, “It’s the retard! I told you guys I was right. It is the retard.” Again, I am grateful that we have been able to shelter Alex from the cruelty and bullying of adolescent peers who would take advantage of his weakness. She, like me, realizes that our sons are actually superior to these “normal” teenagers because Max and Alex would never say anything deliberately mean to make someone else feel bad. Moreover, our boys are excellent for determining people’s true character by separating the kind from the unkind. Later in the book, she states, “I’ve been fascinated by the way strangers react to Max. He brings out the best and worst in humanity, from the rudest of remarks to the most genuine act of selflessness. No one remains neutral.” From my experience, I’ve also found this to be true, and fortunately, most of the people we’ve encountered have been quite understanding of Alex’s differences, and he seems to have a good sense of those who care about him and warms up to them more quickly.

One of the strongest themes in Dancing with Max is the role that faith plays in their lives, which has been crucial to our life with autism, as well. After Max has regularly watched television broadcasts of a church service, she makes arrangements for them to attend that church in person. The experience is delightful to Max, who happily recognizes the familiar aspects of the service, and the people of the church are warm and welcoming to both of them. During the service, she notices a woman keeps looking at Max, and she wonders what the woman is thinking about Max’s somewhat unusual behavior. After the service, the woman approaches them, introduces herself, and explains why she was watching Max, saying, “I came to church today…facing a problem. A huge problem. But then I saw your son’s joy and your joy for him. It changed everything. It changed me. Max is a messenger for Jesus.” Of course, Emily is touched by the woman’s kindness and by the positive impact Max has had upon her through his uninhibited expression of joy. While the stereotype of autism is that these children are often emotionally flat, those who recognize their capacity for emotions can enjoy watching their happiness through laughter and smiles that are natural and never self-conscious. Throughout all the various trials and difficulties, Emily maintains a hold on her faith and proclaims, “God’s fingerprints are all over our lives.” I completely agree because I, too, have seen the hand of God in our lives with Alex, and I know that through the difficulties He has made us stronger and our faith deeper.

“You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to You and not be silent. O Lord my God, I will give You thanks forever!” Psalm 30:11-12

Using Rewards

Although Alex has generally been obedient, at times we have needed to discipline him to make him compliant to rules, usually those involving safety, such as staying out of the street or not touching hot appliances. One of the methods we used when he was younger was Thomas Phelan’s 1-2-3 Magic, which is based on giving two warnings for misbehavior before giving a time out. Because Alex has always liked numbers, he enjoyed the counting aspect of the system. However, like most kids, he would often test the limits by earning both of the warnings, but he was usually smart enough to stop before he reached the third and final count, which meant a time out.

When Alex was in his early teens, we had to re-evaluate disciplinary methods because threats and punishment created anxiety, which led to meltdowns. Since he lacks some social skills, the typical teen punishments of grounding from being with friends and losing phone privileges meant nothing to him. Instead, we would tell him that he might not be able to go places he enjoyed, such as the post office, Walmart, or restaurants. In addition, we would threaten to take away his favorite electronic gadgets, such as his graphing calculator, or take away his computer privileges. While this worked for a while because we always followed through on our threats, Alex became more agitated over time at the thought of not being able to do what he wanted and became aggressive, throwing things, screaming, and hitting us. These fits were not to gain attention or to get his way; he was genuinely panicked about having his routine changed. Moreover, time outs in his room became impossible because he would hurl things at the walls, and we were afraid he’d knock holes in the walls or break windows. His punishments required constant supervision, yet he was likely to turn on us and physically attack us. Therefore, we needed to rethink our methods to get him to comply with what we wanted him to do, yet prevent him from developing destructive anxiety over following rules.

During the adolescent years, we switched to a reward-based, rather than punishment-based, disciplinary routine with Alex. Because we didn’t want to reward him for every single thing he did, we started a weekly reward plan we called Saturday surprises. If his behavior strayed from what we expected of him, one of us simply needed to say “Saturday surprise” to remind him to behave, and he would usually comply. Since Alex has always been interested in calendars, he knew how many days he had before he would get the Saturday surprise reward. The only problem with this system was that it worked so well, we had trouble coming up with different ideas for rewards after he’d earned so many. The Saturday surprises were inexpensive items we knew he would like, such as paperback books, bargain software for his computer we’d find for less than five dollars at the home improvement store Menard's, magazines, Matchbox toy cars, etc. Basically they were stocking stuffer types of items—small, inexpensive, and entertaining. After seeing how well the Saturday surprise system worked, we kept a secret stash of rewards on hand at all times, especially whenever we’d see small items we thought he would like, so that we were always prepared to give him his weekly reward on Saturday mornings. When the novelty started wearing off of the Saturday surprises after many months, we decided to take the pressure off ourselves to seek rewards and decided to put him on an allowance system instead. Like the Saturday surprises, Alex had to earn his allowance through good behavior and cooperation, but it was much easier to hand him cash, and by that point, he was happier to receive cash than a token gift. Moreover, the allowance system taught him the value of saving money because he learned to put money aside for several weeks so that he could buy rewards of his own choosing. Of course, Ed and I reaped the ultimate reward through this system: Alex’s good behavior was worth every penny we spent on Saturday surprises and allowance, and we were thankful that he made the effort to be good. Over time, we were able to phase out the rewards, and he maintains good behavior without any external rewards, which is yet another improvement in him we feel blessed to enjoy.

“Day by day the Lord takes care of the innocent, and they will receive a reward that lasts forever.” Psalm 37:18

Unexpected Rewards

Last weekend I had the rare opportunity to visit with two favorite cousins I hadn’t seen in several years. As understandably proud mothers, they talked about their children—now successful young adults who are intelligent, attractive, and very nice people. In addition, I spent time with my sister and her two daughters, my beloved nieces who are now eleven and fourteen years old, and as Ed aptly describes them, “the nicest girls,” who are also smart, pretty, and personable. Although I am genuinely pleased that their children are doing well, I can’t help feeling a bit wistful that my child still struggles with simple tasks. Their children eagerly anticipate dating, college, and careers, but Alex’s future holds uncertainty and perhaps none of those milestones of young adulthood. On the other hand, he has been spared from much of the angst of the teenage years because he simply doesn’t care what other people think of him. However, as his parents, Ed and I sometimes feel that we are sitting at the airport, waving as our friends and family depart on their journeys of life while we sit in the terminal, waiting on stand-by for a flight that may or may not ever arrive. As much as we try to fight it, sometimes jealousy arises.

Whenever I’m tempted to sink into self-pity mode, something happens to lift my spirits and make me feel blessed for what we have. This week, we took Alex to the dentist for his regular six-month cleaning and check-up. As I described in “Dentist,” Alex loves going to the dentist, and we are thankful that his dentist and especially his dental hygienist are wonderfully patient and sweet with him. While we were pleased to hear the good news that Alex’s teeth are very healthy—he has never had a cavity in his life—we were even happier to hear that he was remarkably cooperative and pleasant. His hygienist enthusiastically told me, “He just gets better and better!” The dentist, whose practice he once told me is comprised of 25% special needs patients, then commented that he knew that Alex faced various challenges, yet we had done a really good job with him and should feel proud. That kind comment blessed us and gave me encouragement I needed. Since Alex had done so well at the dentist, Ed treated him by taking him to one of his favorite places, Walmart. Although most teenagers would not be caught dead grocery shopping with their fathers, Alex loves going with Ed and pushing the cart—for him, this is the equivalent of an amusement park. When they returned home, Ed proudly told me what a great job Alex did navigating the cart through crowded aisles, smiling the entire time. To think that about a year ago, we were pushing Alex in a transport chair through the store because we didn’t trust him to walk through the store on his own makes this progress amazing to us. Besides improving his behavior, Alex also seems to radiate joy that’s contagious. Ed noticed that as Alex smiled, people in the store saw him and smiled back. Perhaps this is his mission in life: to make others feel the joy he finds in everyday experiences.

Along with these two positive experiences this week, Alex also had another good session at music therapy. For the past few months, his music therapist has remarked that he has seen great progress in Alex, especially in his social skills and language, to the extent that he only points out small issues, refining and working toward mastery of skills that took time to develop, such as speaking at an audible volume and looking at people when he talks. In contrast, we have noticed other children in the therapy office waiting room who still struggle with behavioral issues, and we have felt empathy toward their parents who are trying to help their children. As Ed commented the other day, whenever we feel bad about something that Alex can’t do, we see other children who are more profoundly affected by their issues and feel thankful that he has accomplished so much over the years. The other night, as I was mulling over the reassurances we’ve enjoyed from these unexpected rewards this week, I heard country singer Darius Rucker’s new song, “This,” and its uplifting lyrics resonated with me: “All the doors that I had to close, everything I knew but I didn’t know, thank God for all I missed, ‘cause it led me here to this.” Although our path in life hasn’t been typical, looking back, we are, indeed, blessed that God has led us to this.

“So do not throw away this confident trust in the Lord. Remember the great reward it brings you!” Hebrews 10:35

Planning

Spontaneity doesn’t suit me well; I’m someone who needs to plan things far in advance. Fortunately, my organizational skills often help make things in Alex’s life run smoothly. He, however, probably has no idea how much planning went into activities and events because we usually don’t tell him what we’re going to do until a few minutes before we are walking out the door. As Ed and I have commented, we share information with Alex on a “need-to-know basis,” and since Alex usually doesn’t need to know, we don’t reveal our plans until just before they are about to unfold. This saves Alex from being disappointed if something derails the plans, and this also keeps us from having to field repeated questions from him about when we’re going. While this practice is probably a bit deceptive, it has served us nicely.

One area that requires advance planning on my part is going to new restaurants, which is something Alex really likes. Although his behavior prevented him from going to restaurants for a few years, he has regained dining-out privileges the past year or so because of improvements in his social skills (i.e. not making strange noises nor imitating people’s voices, etc.). Because of his restrictive gluten-free and casein-free diet, he can’t just order anything he wants off the menu. Thankfully, many restaurants not only post their menus online but also nutritional information with allergen contents. By scanning through this information, I can figure out ahead of time what Alex can eat at the restaurant before we ever leave the house. Last week, we decided to try a new local restaurant, and, of course, I scoured their online menu to see what Alex could order. Discovering that they could make any of their sandwiches on gluten-free bread was a nice surprise because that opened several possibilities for him. Knowing that too many choices overwhelm him, I suggested three main courses I thought he might like while we were on our way there. Although he is generally fairly decisive when it comes to food, he told us that he wanted to “wait and see,” when he got to the restaurant. Once he perused the menu himself and saw the items I had mentioned previously, he was able to choose. Apparently, he made a good decision because he ate every bite of his gluten-free and dairy-free grilled chicken sandwich, even though he did insist on eating it with a fork after cutting it into bite-sized pieces. Since he rarely eats sandwiches and doesn’t like getting his hands messy, this seemed like a reasonable solution.

Last week, my aunt and uncle and two cousins were in town staying at my parents’ house for a visit. Although Alex eagerly anticipates annual visits with his great aunt and uncle, we never tell him when they are coming. Because bad weather or illness could affect their travel plans, I avoid dealing with Alex’s disappointment by not even mentioning their proposed arrival dates until they are actually here. After we worked out a good time for Alex to see them, we simply told him that we were going to my parents’ house. I did tell him, though, that there was a surprise and asked if he wanted to know before we left home or wait until we got there. He thought for a minute and decided that he’d like to wait and be surprised. (Clearly, he doesn’t get this from me because I’d rather know in advance what’s going to happen.) Also, I think he’s showing a break from routines in that he’s willing to be open to new things without knowing what’s in store. Maybe all the secret planning Ed and I do ahead of time, whispering out of Alex’s earshot in other rooms, has made Alex flexible about doing things on the spur of the moment. Since he usually enjoys what he perceives as last-minute outings, he probably has learned to trust that our plans for him are good. Whenever he enjoys himself, whether eating at a new restaurant or visiting with favorite relatives, Alex’s joy in special activities makes all of our advance planning worthwhile.

“My child, don’t lose sight of good planning and insight. Hang on to them, for they fill you with life and bring you honor and respect.” Proverbs 3:21-22

Parenthood

This week’s episode of the television series Parenthood, “Qualities and Difficulties,” raised some interesting questions regarding how to handle a child with autism. On the show, Max, the son of Adam and Kristina, has recently been diagnosed with the autism spectrum disorder Asperger’s syndrome and has been involved with special training to improve his social skills. In a heated argument with his brother, Adam blurts out in exasperation that Max has autism, which Max overhears and begins questioning. Trying their best to explain to Max what autism is, they use the words disability and tough, and Kristina begins to cry when Max asked if either of them has Asperger’s, and they must tell him that he’s the only one in the family with this condition. Later, when talking to a therapist about the situation, he criticizes the way they handled themselves, saying that they shouldn’t have used negative words or revealed that they were upset; instead, they should help Max focus on the positive aspects. In addition, he gives them a script to use in how to explain Asperger’s to Max so that he can understand it, yet not feel bad about having it.

With Alex, we have been fairly candid about autism and have talked about it rather honestly with him. Just as parents who adopt children are advised to speak openly about the adoption from the time the children are little so that they don’t feel that secrets are kept from them when they find out someday, we felt Alex should know that he has autism and have tried to explain what it means so that he can understand it better. Knowing that his overhearing conversations about autism—especially since he has such acute hearing—was quite likely, we’ve never kept it a secret from him. Moreover, if someone other than us raised the issue of his having autism, we wanted him to feel comfortable with the idea, just as if someone commented that he has brown eyes. While we have emphasized his strengths, telling him how smart and pleasant he is and praising his strengths in memorizing, math, and computers, we have also explained that language and fine motor skills do not come as easily for him as they do for other people, and we understand that he sometimes feels frustrated when he has to work harder to accomplish certain tasks. We have used what the therapist in Parenthood would deem negative words, such as tough and difficult, because they accurately describe some aspects of life. However, we have also shown Alex that everyone has certain challenges that may require help. For example, I can’t see anything without glasses or contact lenses and need a calculator to solve tough problems because math doesn’t come easily, unlike Alex who has perfect vision and can rapidly solve math problems in his head. We have never wanted Alex to see himself as a victim; therefore, talking about autism as naturally as we talk about the weather has made the situation ordinary and something I don’t think he gives much thought, accepting life as it is, but striving to be the best he can because that’s what we have emphasized to him.

In that same episode of Parenthood, the father later decides to take Max to an amusement park, even though it’s a school day. Of course, with Max’s need to follow routines, he resists the suggestion at first, but his dad convinces him to go by telling him that they can ride a favorite roller coaster all day. Unfortunately, when they start to ride the roller coaster, they are told that the ride is broken and will be unavailable all day because it must be repaired. This sudden change of plans sends Max into a meltdown, disappointed that his plans have been ruined, and he keeps yelling, “It’s not fair!” Naturally, his dad feels responsible that Max is upset due to circumstances beyond his control. The other day we took Alex to Walmart, which he regards with the same enthusiasm most kids do about amusement parks. Happily pushing the cart and helping with the grocery shopping, Alex traveled through the store with a big smile on his face. When we got to the checkout line, the woman in front of us was having problems using her credit card. After much discussion with the Walmart clerk and later a store manager, they finally had to void most of her purchases and leave a cart of merchandise sitting there. Through all of this delay, Ed and I kept watching Alex nervously, wondering if this unforeseen set of problems might upset him and debating if moving to another line might be faster. Fortunately, Alex remained patient and never complained about how long we had to wait. When we got back to the car, Ed commented that he was waiting for a roller coaster meltdown, referring to the Parenthood episode we’d both seen the previous night. Although having to wait wasn’t fair, Alex was able to remain calm and pleasant, and we felt thankful that he seems to be learning how to deal with unplanned delays, a sign that he is not only maturing but also overcoming one of autism’s obstacles. Since life, indeed, isn’t always fair, we’ve tried to be honest with Alex and help him learn to deal with the unexpected, which the three of us have learned together along this autism journey, strengthened by our faith.

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Family Portrait

Last week, Alex, Ed, and I did something Alex would characterize as “extremely rare”: we had a professional photographer take a family portrait of us. The last time we had a photographer take our family picture was in the fall of 1994, when Alex was a few months shy of turning three years old. Sitting on Ed’s lap, toddler Alex doesn’t look at the camera, but Ed and I are happily smiling, blissfully unaware that our child has autism because he wouldn’t receive that diagnosis for another year. My school’s photographer, who had offered a complimentary picture package for me since I had worked with him for several years in my role as yearbook sponsor, took that picture. While I snapped many photos of Alex when he was little, we only took him twice to have his picture taken professionally when he was about six months old and again when he was about eighteen months old. Having seen many professional photographs of little kids with their eyes red and noses running from crying during photo sessions, we opted to stick with candid photos of Alex instead. Once he was diagnosed with autism, we were uncertain how he would deal with bright lights, unfamiliar settings, and a stranger telling him what to do, which is why our only family portrait is now more than sixteen years old.

A couple of weeks ago, the editor of Valparaiso University’s alumni magazine contacted Ed because he was interested in writing an article about the autism blogs that Ed and I write. In addition, he arranged for a photo session with the three of us to provide a photograph to accompany the article. As the picture day approached, I felt some apprehension, not knowing how Alex would react to the new situation, and I was uncertain about how the photographer would handle a teenager with autism. Fortunately, Alex was calm and in a very good mood the day of the photo session, which eased my concerns a bit. When we arrived to have our picture taken, we discovered that we would have our hair and make-up done before being photographed. Now Ed was the one with trepidation, as he wasn’t thrilled with that idea. Alex, on the other hand, loves to be groomed, and he happily sat still as a pretty and personable young woman fixed his hair and applied a light coat of powder to his face. Similarly, I enjoyed the pampering since I’ve never had makeup professionally applied. Once we were deemed camera-ready, we waited for the photo session to begin.

When the photographer introduced himself, I was impressed that he warmly greeted Alex first. He asked Alex how he was, but Alex misunderstood the question and thought he was asking how old he was, so he told the photographer that he was nineteen. The photographer told Alex that his name was Tom and that he was 53, which delighted Alex, who loves to quantify people by numbers. As Alex laughed, I explained to Tom that Alex likes to know people’s ages, but we won’t let him ask adults how old they are. His volunteering his age instantly endeared him to Alex. Moreover, he offered to show Alex how his computer captures digital images and uses numerical values to indicate light and shadow. Allowing Alex to maneuver his computer mouse, Tom explained that pure white has a value of 255 and asked if Alex had an idea what numerical value pure black has. Without missing a beat, Alex told him, “Zero,” which was the correct answer. Since we were amazed that he immediately came up with the right response, I asked Alex if he had guessed or if he actually knew the number. He told me that he’d read it on the Internet. Once we began the session, Tom continued to engage Alex in the process, talking with him as if he were an old friend. After finding out that Alex is interested in math and pi digits, he had Alex say, "Pi" instead of "Cheese" before snapping the pictures. Ed and I appreciated that Tom treated Alex with a natural kindness that put all of us at ease. Whenever people show patience and understanding with Alex, we feel blessed that God has brought those people into our lives, even if for a brief time because they bring out the best in Alex. Despite our concerns about how this situation would go, we found this family photo session to be pleasant and memorable, thanks to all the people involved whose friendliness and understanding made the experience fun for Alex, and, therefore, enjoyable for Ed and me, as well.

“A glad heart makes a happy face…” Proverbs 15:13