Euphemisms

One of Alex’s first evaluations was with an audiologist to test his hearing. Even though we knew that Alex’s hearing was excellent and probably overly sensitive, his pediatrician thought we should have his hearing assessed because of his language delays. Essentially, this evaluation was worthless, as Alex apparently would not cooperate with the audiologist; she would not allow us to be present during the testing. Perhaps she lacked experience with children, especially those on the autism spectrum, but she seemed to lack an understanding of how to deal with Alex. She focused upon issues other than his hearing, which she could not test accurately because he refused to wear the headphones, due to his tactile sensitivity. Instead, she told us that he was “very immature” and had “an odd gait.” Considering he had just turned four, I’m not certain what she was expecting in terms of maturity. Moreover, his odd gait was also related to his tactile defensiveness, as he exhibited the toe walking often common in children with autism. Since she was sending a report to Alex’s pediatrician, she could have mentioned these observations to him and allowed him to pursue them in greater depth with us.

On the other hand, maybe she recognized some of the classic symptoms of autism and wanted to make certain we were not in denial about Alex’s developmental delays. When she brought up these non-hearing related concerns, I assured her that we had scheduled a full battery of testing through the school system as we suspected he had autism. Her demeanor had no sense of sympathy or compassion; she acted as though we had wasted her time. This experience, though frustrating, taught me a lesson about how to talk with parents about their children. As a middle school teacher who often works with special education students who are mainstreamed into my class, I have learned how to write reports and make comments during IEP conferences that focus on the child’s strengths and suggest ways to improve any areas of weakness. I think all parents deserve that kind of compassion when it comes to discussing their children, and I wish that audiologist had considered the impact of her words when she described Alex only in negative terms. As a parent and a teacher, I would offer the following suggestions for professionals when describing children, especially special needs children.

In the words of the old adage, “If you don’t have anything nice to say, don’t say anything at all.” Surely, all children have some positive qualities that should be accentuated first, such as being pleasant, polite, or hard working. Professionals need to start their assessments on a positive note, finding kind words that they can say about the child.

To quote poet Emily Dickenson, “Tell all the Truth but tell it slant…” While certain truths may need to be revealed, choosing words carefully, even in the form of euphemisms, will make parents more receptive to hearing about any issues. For example, a child who is hyperactive could more positively be described as “energetic.” In talking about a child with attention deficit disorder, the professional could mention that the child needs to be engaged and interested to gain focus instead of accusing the child of simply not paying attention. Kind words prove more effective than harsh ones when talking about children.

Finally, a former principal in a faculty meeting once told my colleagues and me to treat our students the way we would want our own children to be treated. In this teachers’ Golden Rule, he reminded us that our students are someone’s beloved children, and our words have the power to encourage them to achieve.
If professionals remember that carefully chosen words—both positive and negative—have meaning and impact, perhaps they will consider focusing upon strengths and kindness to bring out the best in both parents and the children they love so dearly.

“Worry weighs a person down; an encouraging word cheers a person up.” Proverbs 12:25

Easter

When I went down to the basement yesterday to get out Alex's Easter basket, I decided to pull out our photo albums to find Easter pictures of him. In many of the pictures, Alex is digging into the same Easter basket he's had every year, a gift from Ed's dad for Alex's first Easter. Among my favorite Easter photos are the ones where he's sitting on the Easter Bunny's lap. Even though Alex never wanted to sit on Santa Claus' lap, he adored the Easter Bunny and had no trouble being friendly with the giant animal with big ears [as pictured at left, the Hallmark Crayola Bunny with Alex, age fifteen months]. Perhaps Alex's early fondness for the book Peter Rabbit and the Bugs Bunny cartoons made him generalize that rabbits are funny and loveable. As with Santa, we allowed Alex to believe that the Easter Bunny was real far longer than most children do because he seemed to enjoy the idea so much.

In addition to waiting for the Easter Bunny, one of Alex's favorite Easter traditions when he was younger was coloring and decorating eggs. Using coffee cups filled with Paas egg dye, vinegar, and water, he and I worked together to color hard-boiled eggs. He also liked putting stickers that came in the dye kit on the eggs. We continued this tradition until a couple of years ago when Alex seemed to be doing the task out of obligation instead of for fun. Apparently, he had decided that he had outgrown coloring Easter eggs, which actually came as a relief to me. As the only one in our house who will eat hard-boiled eggs, I no longer had to make sure the Easter eggs got eaten before they went bad. Since Alex doesn't like hard-boiled eggs, we've had to be creative about what treats to put in his Easter basket. With his strict gluten-free and casein-free diet, he can't eat many typical Easter candies. Fortunately, he likes marshmallow Peeps candy, which he can eat on his diet. Of the various choices of chicks and bunnies in pastel colors, Alex's favorite Peeps are blue bunnies. Besides blue bunny Peeps, he also likes Kraft marshmallow bunnies that come in a mix of pastel colors. Along with the marshmallow Easter candies, he also finds jelly beans in his Easter basket every year.

Because of his great interest in calendars and numbers, Alex has a fascination with the way Easter falls on different dates, ranging from March 22nd to April 25th, depending on when the first Sunday falls after the full moon after the vernal equinox. He has studied the patterns of Easter dates in depth by reading about them online. Without missing a beat, he informed me that the earliest Easter in his lifetime was March 23, 2008, and added that early date will not happen again "in the near future." Today's late Easter date of April 24th beats his prior late Easter of April 23, 2000. Somewhere in his mind, Alex has memorized a spreadsheet of Easter dates and the years those dates fall, and he's proud that he can access that information easily. What I'm most proud of as his mother, however, is that Alex understands the true meaning of Easter. Even though we haven't been able to attend church because the crowds would overwhelm Alex, we've striven to instill religion and faith into him. When I asked him yesterday why we celebrate Easter, without hesitation, Alex responded, "Jesus was crucified and came back to life." Knowing that he understands and believes in the resurrection gives me comfort that he grasps one of the essential tenets of Christianity described in John 3:16: "For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." What greater gift could there be?!

"The apostles testified powerfully to the resurrection of the Lord Jesus, and God's great blessing was upon them all." Acts 4:33

One Hundred

Today I’m celebrating a special milestone: this marks the one hundredth blog entry I’ve written for One Autism Mom’s Notes. If someone had told me last summer when I started writing this blog that I’d be able to write one hundred entries, I would have doubted my ability to find that many topics to discuss. Coming up with a name for the blog was challenging in itself, and I wound up essentially copying the title of Ed’s blog, One Poet’s Notes. I hoped at the time he’d think that “imitation is the sincerest form of flattery.” However, he probably knows me well enough to realize that what I lack in creativity I make up for in tenacity. Thankfully, nineteen years of parenting Alex have provided a wealth of stories, some more interesting than others, I’m sure. While I originally intended for my writing to provide Alex with a written history of his life, I’ve been pleasantly surprised that other people seem to enjoy reading what I’ve written, too.

One of the fun aspects of writing the blog has been checking the statistics to see where the blog is being read as countries light up on a world map. Shortly after I began writing the blog, I was delighted to see that my entries had been read on six of the seven continents of the world. (I’m not holding my breath for readers in Antarctica since I think they probably have greater concerns than the musings of an autism mom.) So far, the blog has been read in the following sixty-five countries around the world: Algeria, Argentina, Australia, Austria, Bahrain, Belgium, Belize, Brazil, Bulgaria, Canada, China, Croatia, Czech Republic, Denmark, Ecuador, Egypt, Estonia, Finland, France, Germany, Greece, Hong Kong, Hungary, Iceland, India, Indonesia, Iran, Ireland, Israel, Italy, Japan, Kuwait, Latvia, Lithuania, Luxembourg, Malaysia, Moldova, Netherlands, New Zealand, Norway, Qatar, Pakistan, Panama, Paraguay, Peru, Philippines, Poland, Romania, Russia, Saudi Arabia, Singapore, Slovenia, South Africa, South Korea, Sri Lanka, Sweden, Taiwan, Thailand, Turkey, United Arab Emirates, United Kingdom, United States, U.S. Virgin Islands, Vietnam, and Zambia. (Not being as strong in geography as Alex, I had to look up where Belize and Moldova are located.) Although I don’t actually know who’s reading my blog other than those who tell me in person or through written comments, I do know that here in the United States, my blog has been read from coast to coast: in the East on Long Island by Ed’s sister, in the West by my mom’s childhood friend and now mine in California, in the South by Ed’s youngest sister in Florida, and in the North by my aunt in Minnesota.

To all of those who have read One Autism Mom’s Notes, written nice comments, given me “Likes” on my Facebook page, and complimented me in person, I appreciate your kindness and support. I am also grateful to my mom, who lovingly encourages all of my efforts and reads my entries more than anyone and who, along with Ed, is good to catch any typos I make and point them out for me to fix. Having English teachers in the family comes in handy. In addition, Ed, who is an experienced blog writer, has patiently shown me how to format the blog while never making me feel technologically challenged. On a side note, today is also the anniversary of our first date twenty-seven years ago. I can’t imagine going through all the ups and downs of raising a child with anyone other than Ed, who is a wonderful husband and father. Of course, the blog would not exist without the inspiration of Alex, who has taught me more about life than anyone. While I would happily wish away the obstacles autism has brought to his life, I’m very proud of who he is and thankful for the lessons we’ve learned along the way. Our love for him drives us, our faith in God guides us, and our hope for the future keeps us striving to help Alex reach his full potential. In the words of my favorite poet, Robert Frost: “I always entertain great hopes.” In the meantime, I’ll keep writing Alex’s story until he can tell it himself, which will be a fascinating account, I’m certain, and one I hope he’ll be willing to share, as well.

“Still other seeds fell on fertile soil, and they produced a crop that was thirty, sixty, and even a hundred times as much as had been planted!” Matthew 13:8

On Happiness

Poet T.S. Eliot wrote in The Waste Land, “April is the cruellest [sic] month,” and Alex would probably agree with that sentiment. For some reason, April is always rough on him, and as a result, difficult for Ed and me, too. We’ve never figured out whether he is bothered by spring allergies, changes in weather, or something else, but every April, he acts agitated and more easily falls into meltdown mode. This past week, Alex has been irritable at times, complaining that he doesn’t like the computer game Monopoly Junior, which he hasn’t played regularly for about five years. As a sign of his volatile nature, a bottle of the prescription sedative Ativan has been sitting on the kitchen counter all week, ready if needed to keep him from becoming aggressive. A friend of mine who also has a child on the autism spectrum shared with me that this week has been challenging in their household, as well, and we wonder if something in the air is setting off our kids and affecting their behavior.

Whenever we have these setbacks, I have to fight feelings of sadness that old behaviors have returned, even if temporarily, and instead focus on positive thoughts to regain my happiness. To realign my thinking, I remember one of my favorite quotes from Pastor Joel Osteen: “Don’t let anyone steal your joy.” A friend who also likes this line added her own twist, telling me this week, “I’m holding onto my joy with BOTH hands.” Although most of my friends did not realize that we’ve been walking around on eggshells this week with Alex, their acts of kindness lifted my spirits more than they realize. For instance, one morning this week I found on my desk at work a wax paper bag from my favorite bakery with a delicious chocolate treat inside, a thoughtful gift from a friend who always seems to sense when I need the comfort of chocolate. Another day, one of my dearest friends who did know that I was feeling overwhelmed e-mailed me a loving and encouraging note of support, reminding me that I’m stronger than I think I am. The next day, I received a kind note from my cousin, who brought out my maternal pride as she described Alex as a “handsome, sweet young man.” In addition, Alex’s speech therapist many years ago contacted me via instant messaging on Facebook yesterday morning, telling me that she still has a sampler I embroidered for her when Alex worked with her. The cross-stitch picture includes a verse from Proverbs: “A good word doth the heart good.” I was pleased to hear that she still keeps this gift I made, which reminds her of Alex, on her piano, and she went on to say that she tries to live her life according to that saying. Of course, I was touched that she valued the gift so much after all these years. Yesterday offered another pleasant diversion, breakfast with two good friends, one who calms me and another who energizes me. Despite my worries over Alex, the week turned out well because unexpected blessings came from friends who brought me joy in the midst of uncertainty. I’m sure these acts of kindness were not random; God knew I needed the help of others to find my joy.

Of course, the greatest blessing of the week came when Alex’s anxiety seemed to lessen as the week went along. He, too, knows that happiness can be found in simple things. This week he started wearing the lanyard and ticket from the NASCAR Brickyard 400 race a friend of mine gave him last summer. As he put it around his neck and studied the layout of the Indianapolis Motor Speedway printed on the back of the ticket, an ear-to-ear grin spread across his face. Another item that brought him joy was my offering to make him cinnamon toast for breakfast this week. Since he seemed to have lost interest in eating other breakfast items he previously liked, I thought he might enjoy cinnamon toast on the Udi’s gluten-free bread I had bought. The mention of cinnamon toast sent him running to the kitchen table, no matter what he was doing, and he devoured every bit happily. Perhaps out of gratitude (or boredom), he’s been very willing to help me around the house this week. Since tendonitis in my right thumb makes certain jobs difficult, I’ve had Alex helping me with laundry, vacuuming, and mopping, all of which he did with a surprisingly cheerful attitude. While the kindness of my friends has brought me joy this week, nothing has given me greater happiness than seeing Alex smile and hearing him laugh. Essentially, when Alex is happy, Ed and I are happy. Fortunately, April is more than half over, and we hope that the April showers dampening Alex’s mood are nearly over so that we can all enjoy the flowers and sunshine we know are coming in the future. In the meantime, we look for happiness and feel thankful when we find it in simple pleasures.

“Give me happiness, O Lord, for I give myself to You.” Psalm 86:4

Saving

Before Ed and I were married, he proudly claimed that he could fit all of his belongings in his car. Considering that he was driving a Mazda GLC (Great Little Car) at the time, this was quite a feat. Since he had been a graduate student living on a teaching assistant’s meager salary, he didn’t have a lot of worldly goods to his name. Fast forward to the present, about twenty-five years later, and now we couldn’t fit all of the items from a single room of our house in that subcompact car he used to own. While we’re not even close to needing an intervention from the reality show Hoarders, I do admit that I like to keep things and must push myself to get rid of old possessions to make room for new ones. I’m always a little nervous that if I get rid of something, sometime in the future I’ll decide I need, want, or wish I’d kept it. Poor Alex has inherited this need to save things from me; his belongings wouldn’t fit in the Mazda GLC, either.

Most of the items Alex wants to save are paper-related: books, newspapers, and lists he has scrawled in his illegible handwriting or typed so that he can read them. Because Alex likes to sleep with his favorite books, many of them have covers missing along with bent or curled pages. Nonetheless, he never wants to get rid of any of his books, no matter what their condition. Consequently, we have provided him with bookcases so that he can keep his beloved books neatly and safely stored. As for his lists, we have tried various methods through the years to organize his scattered pieces of paper that usually contain dates, statistics, and other numerical values that only seem to make sense to him. Often, he would spread out these lists on the floor, poring over them proudly as he studied the information he valued, such as prime numbers or pi digits. To limit the scattered paper, we encouraged him to type his data on the spreadsheet program of his computer so that he could save this information digitally. A few years ago, when his computer suddenly stopped working, Alex’s primary panic was not the loss of his computer but his potential loss of data, and he moaned that he’d lost all of the lists he’d so carefully typed. Thankfully, the computer only needed a new power switch, and Alex could access his beloved lists within a few days. To help him organize and save all of his lists recorded on typing paper, sheets torn from legal pads, and assorted scraps from notepads, we bought him a cardboard file box in which he could store hundreds of lists. In addition, we later convinced him to write his lists in old-fashioned composition notebooks with marbled covers that securely kept his lists intact, which the legal pads and other notepads did not. These methods allowed Alex to save his lists while keeping our house neater.

Since Alex would probably save everything that he brings into the house and never get rid of anything, we have devised tricks to get rid of items he no longer needs. Of course, if we told him we were giving away or throwing away his stuff, he would likely throw a fit. Instead, we must use a technique of shifting, which allows us to get rid of Alex’s things gradually. For example, for a while Alex wanted a copy of the The Wall Street Journal every Saturday so that he could study stock market trends. Once he had that weekly edition, he would carry it around the house, sleep with it, and generally make it a crumbled mess of shredded paper from handling it so much. However, he was reluctant to part with any of these newspapers and would have been upset had we suggested throwing them away or putting them in the recycle bin. After Alex would go to sleep, Ed or I would grab the oldest editions of the The Wall Street Journal, leaving the newer and less tattered ones where he could find them, and put them in the garage or the basement. We were afraid to get rid of them completely, for fear that Alex would be angry that we had taken his precious belongings, so we put them in a holding place where he wouldn’t see them. Had he asked for a specific one, we could still get it for him. After several weeks passed and we felt certain he no longer missed those papers, then we would hide them in the garbage to get rid of them for good. Similarly, we used the shifting technique with old toys, sending them over to my parents’ house, where the grandkids could play with them there. If Alex showed an interest in playing with his old toys there, we kept them, but if he ignored them, we would give them to Goodwill after we were certain he wouldn’t want them again. Over the years, this shifting method worked very well to help Alex sort through the possessions he thought he needed and wanted to save. Had we allowed him to save everything, we might have been candidates for Hoarders, indeed. While he doesn’t need to limit his possessions to those that would fit in a small car, keeping clutter to a minimum is something Alex will need to learn eventually.

“May Your ways be known throughout the earth, Your saving power among people everywhere.” Psalm 67:2

Survivor

One of my guilty pleasures in life is watching reality television shows. With favorites such as Dancing with the Stars, American Idol, Top Chef, The Amazing Race, and Celebrity Apprentice, I find a relaxing escape nearly every day enjoying these shows that involve competition and cooperation as people complete assigned tasks. This week my mom forwarded me a humorous e-mail proposing a new season for the reality show Survivor that entails business people being placed in an elementary school and having to complete typical teacher tasks, such as writing lesson plans, conducting safety drills, and making bulletin boards. Challenges included trying to teach students with special needs, keeping the photocopying within the monthly budget, and planning bathroom breaks around times when someone else can watch the class. While the actual proposal was much longer and more detailed, the gist of the e-mail was to illustrate that most people don’t understand how difficult teaching really is. Having taught for more than twenty-six years in a public school, I understood and appreciated the satirical tone, especially the lines, “They must maintain discipline and provide an educationally-stimulating environment to motivate students at all times. If students do not wish to cooperate, work, or learn, the teacher will be held responsible.” As I mused over the truth and the humor of this proposal, I began thinking about another possible season of Survivor.

Survivor: Autism would require participants with no experience in raising or teaching a child with autism to supervise such a child while successfully meeting the medical, educational, and social needs for that child. Armed with laptops, contestants surf the Internet, looking for the latest autism research and seeking professionals who can provide therapies that meet the child’s needs, including speech therapy, occupational therapy, sensory integration therapy, and biomedical interventions. With limited financial resources, contestants will spend time pleading their cases to insurance companies as to why this child needs benefits that they routinely deny. In addition, contestants must attend IEP meetings in which they will also fight to ensure the child receives the best and most appropriate educational placement and services. Special reward challenges could include “If I Knew You Were Coming, I’d Have Baked a Cake,” in which contestants must bake a gluten-free and casein-free birthday cake for the child, who is on a restricted diet due to food allergies or sensitivities. The winner of this challenge would not only complete the task in the allotted time and meet the dietary requirements, but would also make a cake with a taste and texture the child would actually eat. Those who create a cake decorated to resemble the child’s current favorite cartoon character receive bonus points for this task. Another challenge might be called “Déjà vu”; contestants must sit patiently as the child watches a favorite Disney video or DVD dozens of times in a row or asks the same question repeatedly for over an hour. If the child jumps up to replay a favorite scene, the contestant may not intervene, lest risking a full-blown fit. Facing this endurance type of challenge, the winner of this task simply sits through this scenario over and over calmly and patiently until all of the other competitors have left screaming or been dragged away by the men in white coats from the challenge. Perhaps the most difficult challenge would require dealing with the child who is in complete meltdown mode. Entitled “Be Jack Bauer,” named after the hero from 24 who always remains calm, even in dire circumstances, contestants must calm, cajole, and comfort a child who is anxious, angry, and aggressive after something simple happens, such as the cable or Internet service stops working. Those who can talk the child down from this level of upset by lying, bribing, or distracting without losing their own tempers can successfully complete this challenge. Those who get through the task without getting hit, kicked, or bitten, along with nothing getting broken by being thrown, win bonus points. Of course, the irony of Survivor: Autism is that most contestants would beg to be voted off of this island and smile as Jeff Probst snuffed their torch, sending them back to freedom, no longer having to “Outwit, Outplay, Outlast.”

As I consider my affinity for reality television shows, I realize that I enjoy the psychological aspects and watching how people react to difficult circumstances. Moreover, I always wonder why people would voluntarily agree to be part of something that not only tested their skills and character, but also allowed them to be scrutinized by millions of people watching them on television. In many ways, parenting a child with autism is like being on a reality television show. Daily, we face tests with unusual challenges that force us to be resourceful in limited amounts of time. Moreover, “judges” sometimes criticize our performance, whether by askance looks at our children or us or by comments that range from clueless attempts to be helpful (a la Paula Abdul) to the blatantly rude (a la Simon Cowell). In this month of Autism Awareness, I pray that those who have not played Survivor: Autism learn a tolerance and compassion for those of us who are completing our challenges the best we can, often blinded by the love we feel so deeply for the special children whose progress rewards us more than any reality show ever could.

“They will survive through hard times; even in famine they will have more than enough.” Psalm 37:19

Defusing

Lately, Alex has been a little edgy, which makes life feel as though we’re walking through a minefield. Springtime frequently seems to make him somewhat irritable. We’ve never been certain as to whether he has environmental allergies in the spring that agitate him, or whether he has had enough of being cooped up inside for the winter, such that his cabin fever makes him more easily upset. In addition, the various activities Ed and I have at the end of our school year may make us more stressed, and I suspect that Alex, who is sensitive to other people’s feelings, picks up on the differences in our moods. Nonetheless, we have been on guard lately for him to launch into anxiety-driven complaint sessions that we have to defuse so that they don’t escalate into full-blown meltdowns.

The other day, Ed stopped by our local cable office on his way to work to pick up a new modem for our Internet service because our old modem, although currently working, is outdated and slow. He had planned to install the new modem when he got home. Unfortunately, without telling us, the cable company decided to cut off our Internet service through the old modem as soon as he picked up the new modem. Shortly after Ed left for work, Alex came whining to me that I needed to fix the computer, and I discovered that neither his laptop nor mine had Internet access. In a panic knowing that Alex would be an unhappy camper without the Internet, I called Ed to tell him what had happened, and we figured out what the cable company had done. Ed promised to come home from work as soon as he could to set up the new modem and restore our home Internet access. In the meantime, I called my mom and shared our dilemma, and she immediately suggested that I bring Alex over to their house, where the Internet was working fine. This solution eased Alex’s anxiety about not being able to Google Jeopardy trivia or to play his favorite You Tube videos. By the time Alex and I got home, Ed already had the new modem hooked up and running smoothly, so we had averted the crisis by defusing Alex’s anxiety over not being able to use his computer access to the Internet.

During the past couple of weeks, Alex has been obsessed about when past obsessions of his went away. He gets himself worked up telling us repeatedly about when he stopped doing certain things, such as using his graphing calculator or playing specific video games. In addition, he makes a point to tell us that he NEVER wants to do those things again. After having gone through this routine several times, I decided that writing down his complaints on a notepad might ease his anxiety, especially since he is a visual, rather than auditory, learner. I thought perhaps if he could see that we took his concerns seriously enough to write them down, and if he could see them written, he might be less upset by these obsessive thoughts. Since then, each time he starts talking about them, Ed or I pull out the notepad and start reading the details to him, which seems to calm him and prevents him from becoming aggressive or really upset. Sometimes he wants to give more precise details to the information already written, so we will add those to the current list. Specifically, Alex’s updated list of concerns includes the following items, to name but a few:

“Starting May 23, 2008—tired of playing Bosconian [video game], had a record score of about 2 ½ million, which took about 5 hours

No graphing calculator since February 2003

2008—bad year—deep voice August-December; now medium voice

Don’t want to play Monopoly Junior [computer game]—last played Wednesday, January 3rd, 2007—takes too long, up to a day, 100% boring, more boring than hockey

August 7, 2008-December 2008—tired of voices [He used to imitate other people’s voices constantly.] all the time—Retired voices January 2009—NEVER AGAIN!”

Although trying to calm Alex’s upset can be emotionally draining, we’re pleased that he seems to respond positively to using the notepad. In addition, his current concern for eliminating past obsessions seems to be a sign of progress that he doesn’t want to obsess over things anymore. Ironically, this new obsession with old obsessions seems to bother him more than the old ones ever did. Nonetheless, we know this phase, as has every other phase he’s gone through in the past, will eventually disappear, and we will feel blessed to have come through yet another stage in his development.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, he will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Dinner

On rare occasions, I’m not home to eat dinner with Ed and Alex because I have a meeting at school. Even more rarely, I have dinner at a restaurant with several of my friends, most of whom are retired teachers. My absence from our family dinner table sets up an honored tradition known in our house as “Boys’ Dinner,” something Alex eagerly anticipates. Ed probably looks forward to these evenings, as well, but he has enough social grace not to show his delight the way Alex does when I leave the house prior to Boys’ Dinner night. Alex practically shoves me out the door so that Boys’ Dinner night can begin; Ed just tells me a little too eagerly to have fun. While a change in routine might bother some kids with autism, Alex doesn’t seem fazed at all by our dinner routine being altered. I suppose as long as he knows that he’s going to eat, he probably doesn’t care who his dinner companions are.

Last week, Ed and Alex held one of their celebrated Boys’ Dinners while I went out to dinner with some of my friends. I suspect a big part of the enthusiasm about Boys’ Dinner lies in that they make and eat foods that I don’t. Specifically, my guys love seafood, which I detest, so seafood is usually on the Boys’ Dinner menu, especially shrimp, which is Alex’s favorite food. Another favorite meal for the boys is something Ed has dubbed “Frank Beanwiches,” which consists of hot dogs cut up in baked beans, or what I call “Cowboy Dinner.” The other night, they opted for brats and sauerkraut, another meal they love, but I despise. While I think it’s nice that they enjoy cooking and eating a meal together, their choice of pungent foods, such as shrimp or sauerkraut, leaves such a nasty smell behind in the kitchen that I feel as though I were present for the meal anyway. I might add that I’m always impressed that Ed cooks a special meal for Alex himself. When Ed has a meeting or business dinner that prevents him from eating with Alex and me, I usually make a fast food run, happy to have an excuse not to cook.

Part of the novelty of Boys’ Dinner—aside from my absence—lies in the preparation of the meal, which Ed and Alex share. Recently, Ed has been very good to include Alex in cooking, patiently teaching him various steps of the process. Perhaps this takes Alex back to his earlier years when he watched the Food Network religiously, referring to all of their chefs on a first-name basis and imitating them in his play kitchen with plastic utensils and food. Taking pride in his culinary accomplishments, Alex happily acts as Ed’s sous chef, doing whatever he asks, including setting the table. In contrast, a few weeks ago, I tried to involve Alex in baking a cake with me, thinking that he’d find that task as enjoyable as cooking with Ed. Despite the allure of using the electric mixer, Alex obviously had no interest in being a pastry chef, or at least baking with me. As he held the mixer with a clearly bored look on his face, I asked him if he was having fun. He told me, “Not really.” When I gave him an opportunity to leave the kitchen, he took off running to watch television instead, thus ending my attempt to do something together and to teach him something new. Fortunately, he’s more cooperative with Ed, and the two of them work together well, whether I’m home or not. One of the last tasks Ed gives Alex when they cook together is to tell me that dinner is ready. Actually, Ed refers to the evening meal as “supper,” which is what he tells Alex to relay to me. However, Alex has apparently learned a thing or two from me because he, like me, refers to the evening meal as “dinner,” telling me, “Dinner’s ready.” What pleases us most, however, is that Alex enjoys interacting with us, whether it be preparing or sharing a meal. Moreover, we are grateful that he actively participates in an everyday activity that brings him joy and makes us proud of his achievements.

“Better is a dinner of herbs where love is than a fatted calf with hatred.” Proverbs 15:17

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