Recalling Tragedy

As we remember the tragic events of September 11, 2001, on this tenth anniversary, we recall what we were doing when we first heard the news. I was teaching my seventh grade English classes on that morning when my close friend Sharon came to find me between first and second periods to tell me that a plane had crashed into the World Trade Center. Knowing that Ed, a native New Yorker, had family who worked in Manhattan, she was concerned about my in-laws and knew I would want to make certain they were all right with a call home to Ed. Not wanting to tie up the phone lines in case Ed was trying to get ahold of his sister and brother, I decided to wait to call him until the break between my next two classes. During the next class, my principal brought me a written message that he was hand delivering to all staff members. In capital letters at the top of the note read the following statement: “DO NOT SHARE WITH STUDENTS!” Trying not to register any emotion, I quickly scanned the rest of the note detailing the planes crashing into both of the World Trade Towers as well as into the Pentagon. Moreover, the note stated that one of the Twin Towers had collapsed. Saying a silent prayer, I somehow calmly taught my students a lesson on punctuation. After that class, I ran to the library, where I knew I would find the comfort of my friend Sharon and hoped to find more news on what had happened.

A quick phone call home to Ed reassured me that he and Alex were fine, and he had been able to ascertain that his brother and his sister’s husband, both of whom worked in New York City, were thankfully safe. Our next concern was how Alex was going to react to the constant barrage of news reports detailing the horrible series of events. We weren’t sure how much he comprehended in his nine-year-old mind impacted by autism. Despite his deficits in social skills, other people’s tears and sorrow have always moved Alex, and we worried that the outpouring of emotion shown on the news would overwhelm him. In addition, we thought that he might be upset because the news coverage interrupted his regular television viewing schedule. He was likely to be more upset by missing The Price Is Right than he was to be upset by the news of the terrorist attacks. Fortunately, he handled the changes better than we expected and did not seem to be agitated by the news broadcasts we had on the television as we were trying to make sense of what had happened.

Despite my upset and fears, I knew we had to discuss with Alex calmly what had happened that day so that he could process it. At the same time, I didn’t want him to have fears that would haunt him in the future, such as being afraid to fly on an airplane or to go in a skyscraper. I had once read that children with autism live in constant fear, and we have always tried to make Alex feel safe, so that he didn’t live in fear. I really don’t think that fear is a constant in Alex’s life because the only things he seems to fear are lightning (probably because I had once told him that he couldn’t go play outside since there was lightning that could strike and kill him—that warning resonated with him) and getting water in his eyes (I take no blame for that one.). He really doesn’t seem overly afraid of anything else, and I hope that’s because he trusts that Ed and I, with God's help, will keep him safe, as we have always done throughout his life. That evening, I asked him if he knew what had happened in New York, and he told me, “Yes, the big buildings fell down.” He didn’t seem to want to talk about it any more than that, and his matter-of-fact nature made us realize that he wasn’t overwhelmed by fear or by what he had seen on the news, and we were thankful that he handled the news calmly. With his vivid visual memory, I’m sure that Alex carries images of September 11th, as we all do—the day when “the big buildings fell down.” Maybe some day he’ll fully comprehend the magnitude of the day’s events, but until he can, I’m thankful that he feels safe and doesn’t allow fear to take any control in his life.

“For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” 2 Timothy 1:7

Pointers

With students all over the country going back to school, stories have arisen in the media lately about special needs children being punished for their outbursts by being excluded from educational services the law demands they be provided. In Texas, a six-year-old special needs student was kicked off a school bus and left near a busy intersection. Details of what happened remain unclear, as he apparently can’t explain what led to a bus driver placing him in a potentially dangerous situation. In Florida, a six-year-old girl with autism and attention deficit hyperactivity disorder was expelled on the first day of school from a charter school specifically designed to meet the needs to children with behavioral issues; allegedly she screamed, bit, and hit the teacher. These stories, as well as those told by my friends whose children with autism have been suspended from school because of their behavior, make me thankful that we were able to homeschool Alex throughout his school years. We could address any concerns at home without the interference of school personnel, who should be equipped to handle behavioral issues of special needs children.

Unfortunately, many people working with children who have autism are not well trained in dealing with outbursts. Instead of recognizing behaviors as likely resulting from anxiety, they may handle the child as simply being defiant or uncooperative, restraining the child and/or punishing with exclusion or suspension from school. As the number of children with autism increases due to the autism epidemic, poor training of personnel who work with these children is no longer an option. Several years ago, the special education department at the school where I teach seventh grade English on a part-time basis brought in a supervisor to give an in-service meeting regarding how to handle children with autism. When he began his talk mentioning “refrigerator mothers” (which he admitted was a theory that had been refuted), I knew he was not the person to be teaching others about autism. As he talked, my colleague friends kept watching for my reaction to what he said. Since I don’t have a good poker face, I’m sure my disagreement with some of his comments was evident. Realizing that he noticed my fellow teachers gauging my facial expressions in response to his remarks, I explained to him that I have a son with autism and that my friends were trying to see if I agreed with the information he was presenting. Undaunted, he went on with his talk that was mostly factually accurate but actually offered little insight in terms of how to work with children with autism. I doubt he really knew; I wouldn’t have known, had it not been for living with Alex and learning to handle his outbursts over time. Perhaps if more school personnel learned how to deal better with autism meltdowns, fewer children would be suspended or expelled from school.

Over the summer, I became fascinated with a television show on National Geographic Channel called Dog Whisperer in which dog trainer, or whisperer, Cesar Millan works with badly behaved dogs that exhibit aggressive or anxious behaviors. I found his insights into dog psychology interesting as he explained why certain dogs acted as they did. In retraining the dogs, he had three rules for the humans when first interacting with the dogs: “No touching, no talking, no eye contact.” After thinking about those rules, I realized that they would also apply when dealing with children who are having meltdowns. Mind you, comparing an upset child with autism to a badly behaved dog may seem harsh, but I suspect both are engaged in the “fight or flight” instincts when they are highly agitated. With Alex, we found that touching him during a meltdown, whether to restrain him gently or to try calming him with a touch, can make him more agitated and aggressive. Hence, the “No touching” rule is a good start. For a child with extreme tactile sensitivity, even a gentle touch may be perceived as a threat and lead to that child reacting with physical aggression, such as hitting or kicking. The second suggestion, “No talking,” needs some modification when dealing with the upset child. We have found that allowing Alex to express his fears, anxiety, and/or anger verbally is necessary to resolve his agitation, and we need to listen to what he’s saying. Once we let him talk, we can then reassure him verbally; however, we must be calm, quiet, and positive and never argumentative in doing so. When a child is screaming, maintaining composure is not an easy task. Once we convey that we know Alex is upset and that we’re willing to help him deal with whatever the source of his frustration may be, he usually begins to settle down. Even the wording of our comments must be careful. For example, if we ask him what the problem is, he will likely become more agitated. If instead we say something reassuring such as, “We will help you,” he’s more amenable to our attempts to soothe him. The last rule about no eye contact also works because we find it more important to watch Alex’s hands as a judge of how he’s responding to the anxiety. As he calms, his hands stop shaking, and we know he’s back to his old self. In addition, we watch his hands to make certain he’s not ready to hurl something in anger or use them to attack us physically. Dealing with an anxious, aggressive child with autism can be upsetting and difficult. However, if the three basic tenets of “No touching, no talking, no eye contact” were utilized instead of “pouring gasoline onto fires” by upsetting the child even more, I truly believe fewer children with autism would exhibit behaviors leading to suspension or expulsion from school. It’s certainly worth a try.

“The Lord says, ‘I will guide you along the best pathway for your life. I will advise you and watch over you.’” Psalm 32:8

Pride

As I’ve mentioned in previous blog entries, Alex loves to grocery shop at Wal-Mart; in fact, pushing a cart down the crowded aisles is one of his favorite things to do. With just a little guidance from Ed or me, he somehow easily navigates around displays, people chatting on their cell phones as they stand in the middle of the aisles, and carts thoughtless shoppers have left blocking pathways. Despite these various irritations, Alex remains constantly cheerful, keeping a smile on his face the entire time. Watching him stroll confidently down the busy aisles, all the while staying out of other people’s way, I feel a pride that he has mastered an accomplishment most of his fellow Wal-Mart shoppers have not. In fact, I’ve half-kiddingly thought about having a bumper sticker made that reads, “My autistic kid pushes a grocery cart better than you do!”

A couple of evenings ago, we stopped by Alex’s favorite fun park, I mean, favorite grocery store to pick up the type of ham he likes to eat for breakfast. Since we were only getting the one item, we didn’t need a cart, but Alex still managed to stay out of other people’s way as he walked through the store. He has a habit of holding his hands up near his chest when he walks, which is probably a sensory or balance issue, or may just be a teenage self-conscious one since he’s so tall and lanky and doesn’t seem comfortable with his long limbs. Ed has been working with him this summer to try to get him to keep his arms down as he walks so that his gait looks more typical. Over the past several weeks, Alex has gotten better about keeping his hands at his sides, and he’s very cooperative about putting his hands down when gently reminded with the cue word, “Arms.” Without the cart to push, Alex’s hands went up to his chest, and as soon as we picked out the ham, we gave it to him to carry so that he would have something to put in his hands. Trotting through the store with an ear-to-ear grin, Alex looked as if he were carrying a trophy instead of a ham, which reminded me of a funny family story from my childhood. One time when we were visiting my grandfather, he wanted to give us a canned ham to take home. Because we were riding the train home, my mother explained that there was no good way to transport the ham. Undaunted, my grandfather suggested that my brother, who was probably about ten years old at the time, could carry the ham on the train. My mother explained that he wouldn’t want to carry it, to which my grandfather earnestly replied, “Why, he’d be proud to be carrying a ham!” This has become a joke in the family, as we have asked each other through the years in jest, “Were you as proud as if you’d been carrying a ham?” My cousin Beth tells this story best because she punctuates the details with an infectious giggle. Anyway, as I watched Alex carry that ham through Walmart, I finally understood what my grandfather, whom we called Paw Paw, meant about carrying a ham with pride. I think Paw Paw would have enjoyed watching Alex carry that ham proudly as much as Ed and I did.

While Alex has learned to maneuver the cart through the crowded store, Ed and I have developed a well-choreographed routine after we’ve checked out the groceries to get the food and Alex into the car quickly and efficiently. Last week, Ed commented that he and I were like members of a racecar pit crew the way we assume certain responsibilities in loading Alex and the groceries cooperatively with speed while staying out of each other’s way. Like the racecar driver, Alex pulls the cart into the pit stall, that is, up to the hatchback of our station wagon, which Ed opens. Then, I as the jack man, cue Alex when to go, making sure he is safely secured in his seat. Next, I run around to the back of the car to help Ed, the gas man, load the car with the fuel (i.e. our food for a few days), putting the groceries in the back of the car. Once he’s emptied the gas can, or grocery cart, I take the cart to the corral as he shuts the hatchback, and we quickly get in our seats and get ready to leave. Even though we can’t complete our tasks in less than fifteen seconds, as actual pit crews do, we’re fairly proud of how well we work together getting the job done so that Alex doesn’t have to wait too long for us to get rolling and on the road—almost as proud as if we were carrying a ham, that is.

“Yes, you are our pride and joy.” I Thessalonians 2:20

Stims 2

In my previous blog entry, “Stims,” I wrote about how children with autism often engage in calming behaviors to address sensory needs. Along with the various oral stims Alex had, he also developed various stims with his arms and hands to calm himself. One of Alex’s earliest stims was one I look back upon and realize was probably a red flag that he had autism before we ever suspected he was not typical. Nearly as soon as we brought him home from the hospital after he was born, he liked to sit in his infant chair and wave his arms back and forth. I recognized that movement because I had felt a similar motion within my abdomen when I was pregnant with him and suspected that he was doing his version of the wave. Watching him amuse himself by moving his arms back and forth in a fairly graceful motion for a newborn, we made jokes about this behavior. Someone in the family commented that perhaps Alex was Pentecostal, a reference to a religious group known for waving their arms in the air as they pray.

While we weren’t concerned about this movement, he later developed a stim more commonly associated with autism, hand-flapping. Instead of waving his arms, he would hold his arms fairly rigid but move his hands back and forth. We described this behavior as looking like a baby bird trying to take flight. Alex would often flap his hands when he was really happy and excited, as though he couldn’t contain his enthusiasm. Sometimes he would also jump up and down as he flapped his hands, and he would smile happily. For Alex, this movement seemed to have a calming effect on him as he processed whatever was stirring up his energy. As he grew older, Alex seemed to limit his need for tactile stimulation to movements with his fingers instead of his entire body. For instance, he went through a phase where he would tear up toilet paper as he sat on the commode, and then he would strew the bits of toilet paper throughout the house. While we were pleased that he was toilet trained, we weren’t thrilled to have the house look like a hamster cage, with bits of paper all over the floor. Fortunately, this stage didn’t last long. At times Alex will do a finger flicking motion, which is fairly common in autism, but his has some numerical association, as he counts while moving his fingers. We’ve wondered if he’s developed some sort of calculation method with his fingers, not unlike the Chisenbop method for calculating large numbers by assigning values to specific fingers. Since Alex has amazing natural ability in math, I wouldn’t be surprised if he has some method to this seeming madness of fingers moving up and down as he recites numbers aloud.

A more recent stim that seems to be fading lately is Alex’s tendency to twirl his hair as he’s thinking. While many typical children and adults, although usually female, twirl their hair, Alex’s hair twirling seems to be a replacement for earlier stims. I’m pleased that he’s developed one that is more socially acceptable than earlier ones, but I always have to remember to keep his hair longer on top as I cut it so that he has some hair left to twirl. In addition to leaving him enough hair for twirling, I also make sure he has squishy stress balls to calm his hands when he needs tactile stimulation. This summer I found some bags of small splash balls in the dollar section at Target that he likes to hold and squeeze. Made of nylon material and polyester filling, these balls intended for playing in the swimming pool seem to calm Alex when he’s agitated because they provide an outlet for his need for touch. As I think back on all the various stims Alex has outgrown, I’m thankful to realize how much progress he has made over time and reminded not to fret about any current issues, such as his recent phase of not talking much, because like the stims, they will eventually pass.

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

Stims

A common trait found in children with autism is self-stimulatory behavior, often known as “stims,” and Alex has exhibited a variety of these stims over the years. Because many of these children have sensory integration dysfunction or sensory processing disorder--namely problems with their senses being either excessively or under sensitive to stimuli--they often develop coping skills to help them deal with the world around them. For example, children with highly acute hearing, including Alex when he was younger, will often cover their ears when they hear a noise that bothers them. If children crave sensory input, they may engage in movements to help them sense their bodies in space, such as rocking back and forth, a common behavior seen in children with autism, and one we observe in Alex at times. While these behaviors appear unusual, they are necessary to help calm the child by blocking unwanted input or coping with a need for movement or touch.

From the time he was born (and even before that, as we saw on his in-utero sonogram images), Alex sucked his thumb and continued to do so until he was about five years old. Although this oral stimulation behavior is common in many children (I also sucked my thumb until I was five years old.), he combined it with an unusual tactile stim we called “tagging.” While sucking his right thumb, he would reach around with his left hand and grab the tag at the back of the neck of his clothes and rub it. At first, we wondered if he was bothered by the feel of the clothing tags and that was the reason for pulling on them, but we noticed that he actually seemed to like the sensation of the slightly raised letters sewn on the tags. In fact, sometimes he would instead grab the clothing tag of whomever was holding him. I remember Ed’s brother came to visit when Alex was little and jokingly commented that he was leaving while all of his clothing tags were still intact. Now that so many clothes are made tagless, I’m not sure what Alex would have done without the additional sensory input of the tag to touch. After Alex was diagnosed with autism, I read about using a NUK baby gum stimulator brush on the roof of the child’s mouth to address the oral sensory needs. The brush is made of rubber with little raised nubs, and I was able to find one easily at Walmart as part of a baby oral care kit. Alex really liked having the NUK brush rubbed on the inside of his mouth and seemed to find this sensory integration exercise calming.

In addition to thumb sucking, Alex also had a habit of chewing on things. When he still sucked his thumb, he would often chew his shirt collars if he was using his hands and couldn’t suck his thumb. Also, after he stopped sucking his thumb, he chewed on his shirt regularly, apparently as a substitute for sucking his thumb. This necessitated changing his shirt numerous times throughout the day and often eventually resulted in chewing holes in his shirts. Eventually we were able to help Alex stop chewing his shirts by having him instead chew on rubber tubing his occupational therapist provided. However, if he couldn’t find his “chewie,” he would chew on anything handy—pens, toys, plastic ends of drapery and blind pull cords, and even removing his socks so that he could gnaw on them. This stim vastly improved once all of his permanent teeth erupted, so it may have been in response to teething pain. However, until his wisdom teeth completely came through the gums, he continued some chewing behaviors until his mid-teens. Fortunately, now we rarely see any oral motor issues with him, and he doesn’t seem to need any oral stims to calm himself. In my next blog entry on Wednesday, I’ll write about tactile stims Alex has had and overcome through the years.

“So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while.” I Peter 1:6

Bliss

I've mentioned in previous blog posts about how Alex finds joy in simple things. This week, he discovered some new things that made him especially happy. The first is a You Tube video Ed found called "Guy Walks Across America," which pretty much describes what the video entails. A guy starts at the Brooklyn Bridge in New York and walks in extremely fast forward motion across the United States until he reaches San Francisco's Golden Gate Bridge in California. We're not sure if Alex likes the video visuals that feature Chicago's "Bean" in Millennium Park and the Presidential profiles at Mount Rushmore in South Dakota, among others, or if he really enjoys the background song, "Home." Nonetheless, he continually flashes a huge smile as he watches it while bouncing around on the couch, except when he sees me watching him and acts embarrassed to be so enthusiastic. Then he calmly watches the video, waits for me to leave, and then starts swaying to the music again (as I furtively watch him from another room). Here's the video that has captured Alex's attention, even after watching it dozens of times.



The other night, I was able to get a similar response from Alex which surprised and pleased me. Listening to the '70s cable channel on Music Choice, I heard the old Climax Blues Band song, "Couldn't Get It Right," which I couldn't get out of my head. When Alex heard me singing [or more correctly, attempting to sing] the song, he smiled and swayed, as he had with the "Guy Walks Across America" video he'd been watching repeatedly. As I tried to imitate the deep voice of the lead singer, this tickled Alex even more, who seemed to enjoy my very amateur version of this song, whose video is posted here.



While many teenagers continually whine about being bored, Alex rarely complains and is easily entertained, so long as he has his computer and/or some music to listen to. Despite the challenges autism imposes on his life, Alex finds bliss in the world around him, making his life and ours truly blessed.

"The Lord is my strength and shield. I trust Him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving." Psalm 28:7

Bonding

Since this is the last day of my summer vacation, I’ve been reflecting about the past several weeks, thinking about the old standby essay topic: “What I Did on My Summer Vacation.” Of course, with Alex, vacations are "staycations," but we enjoy our time off from work and the relaxed summer pace as we do things together. One of the main differences this summer—aside from Alex’s allergy issues and self-imposed silence—has been that he and Ed have been virtually inseparable. While Ed has always spent more time with Alex than most fathers do because of his job that allows him to be home quite a bit of the time and because of Alex’s special needs, this summer the two of them have had the opportunity to bond more than ever. Ed commented the other day that he wondered how Alex would react this week once he goes back to teaching. On one hand, Alex may wonder what to do when Ed’s not around, but, as Ed noted, he may be relieved to have a break from hanging out with his dad all the time.

The two of them have turned our family room into a “man cave” where they watch television together as they work on their computer laptops. Other times, they share a companionable silence as each enjoys summer reading—Ed with various novels and Alex with his stack of fact books. One of the differences I’ve noticed this summer is my own television viewing habits. Usually Alex and I watch his beloved Game Show Network during the day, and then he watches my favorite reality shows, such as Dancing with the Stars, Food Network Star, Project Runway, etc., with me in the evenings. Now that he’s watching tv with Ed, I can watch “chick” shows all day long in the other room, so I’ve seen just about all of the Little House on the Prairie and Sex and the City reruns this summer. Meanwhile, Ed and Alex have been watching baseball games, news programs, and the sitcoms The Big Bang Theory and Everybody Loves Raymond. Although Alex has to allow Ed full power of the remote control in some sort of alpha-male behavior (while I shared control of the remote with Alex out of a sense of fairness), he doesn’t seem to mind, happily watching whatever Ed chooses and patiently waiting as he flips through several channels searching for something to watch. I’m sure this is essential to Alex’s development as an adult male, and Ed is just modeling typical behavior for him. This guy time has become so sacred to Alex that he reacts to my entrance into the family room with two very different moods. Sometimes, he suspects that my joining them means that we’re getting ready to go someplace together, and he’ll immediately jump up and eagerly get ready to go. Other times, he seems to resent my intrusion into their man cave, especially if I sit down to watch television with them. In the equivalent of hanging a “NO GIRLS ALLOWED” sign, Alex will often look at me askance as though I don’t belong there, sometimes even giving me what Ed has deemed “the stink eye,” to let me know he’d rather I’d leave the room. Between the dirty looks and their choice of television shows, I haven’t spent a lot of time in that room this summer, but I’m happy that they enjoy each other’s company.

Besides watching tv, working on computers, and reading together, Ed and Alex have enjoyed going various places this summer. As in past years, Ed has taken Alex to the park to play basketball, but this year he took him to a new park. Unlike other city parks, this one has no playground, but is scenic and flower-filled. Teaching Alex some basics of photography, the two of them bring their digital cameras to take pictures, a new activity Alex seems to enjoy. In addition, Ed has taken Alex along on errands, such as going to the home improvement store, taking the cars to get gas or air in the tires, or going to his office to pick up the mail. Alex really likes going to these various places, and when the two of them go without me, he’s pleased to be able to sit in the front seat of the car where I usually sit. Around the house, Ed has engaged Alex in various chores they can do together, including taking out the garbage and watering the flowers in the garden. I like watching them do these tasks because Ed patiently teaches Alex, who is pleased to be doing something with Ed, and he has gained greater confidence over the summer by engaging in these tasks. Perhaps the most interesting bonding experience the two of them had this summer was one I could not observe. Prior to my birthday last week, Ed took Alex shopping for my gifts. In recent years, he has taken Alex to get cards and/or flowers for me, but he would shop alone for the rest of my presents. This year, he decided to shop with Alex at a few different stores, and they got along great, according to Ed. This amazed me because several of my gifts from them were clothing; in the past, Alex blatantly refused to go shopping with me if we were looking at “girls’ clothes.” I’m not sure what Ed had to do to convince him to go to the women’s department, but I would have loved to watch them selecting my gifts, and that thought makes me smile. Although Ed has missed out on many typical father-son bonding experiences since Alex hasn’t played organized sports, he has been rewarded for his devotion because Alex, unlike some teen boys, thinks his father walks on water. While Alex doesn’t show his love and affection in typical ways, the adoration he feels for Ed is evident and makes all the effort truly worthwhile.

“His father said to him, ‘Look, dear son, you have always stayed by me, and everything I have is yours.’” Luke 15:31

Wellness

Last week, we went back to the chiropractic internist who diagnosed Alex as having allergic shutdown earlier in the summer. At that time, he ran some blood tests and offered several suggestions for helping Alex cope with the apparent inflammation that was making him irritable and lethargic. He offered a detailed plan of various nutritional supplements; however, having monitored Alex’s interventions carefully throughout the years, I knew that we could only do one new thing at a time. In order to see what effects—both positive and negative—each new supplement provides, we always introduce them gradually and individually. For example, we have given Alex some supplements, especially fish oils, that have made him hyper, “bouncing off the walls” during the day and unable to sleep at night. Since we knew those supplements were the only thing different, we could feel certain that the new addition was the culprit, and we immediately removed the cause of his negative behavior changes. By contrast, if we saw improvements when we introduced a new supplement, we could feel hopeful that we had found something helpful to him.

After studying the comprehensive notebook the chiropractic internist provided in May, I determined what needed to be addressed first for Alex. Although food allergy testing revealed that Alex only had few sensitivities, we immediately removed those from his diet. Taking away those foods proved not difficult since they included less commonly eaten foods, such as chestnuts and lobster, but we had to take away olives and olive oil, which he did have in his diet regularly. After doing that, we put him back on crucial supplements he has been on for several years: Kirkman’s EveryDay multivitamin, calcium magnesium citramate, and probiotics. At the chiropractor’s suggestion, we had put him on a vitamin vacation, leaving Alex only on OTC lithium drops to regulate his mood, prescription Prozac for his OCD, and vitamin B-12 shots to detoxify his system and heal his nerves. By taking him off the other supplements, we realized that he no longer needed melatonin to sleep at night, nor did he need GABA to calm him during the day, which was a nice surprise. After re-introducing the old stand-by supplements, we added a new one on the recommendation list that contained bioflavonoids to address his allergies. Over several days, I very gradually increased the number of these tablets to the suggested dosage of four per day. We could tell that this supplement was helping Alex because he became more energetic and happier—more like his old self. The next suggested course of supplements was adding vitamin C to detoxify his system. Again, I added this over several days, increasing the dosage in gradual increments and monitoring any changes in Alex. Fortunately, he responded in a positive way to this addition, eating and sleeping well, and other than not talking, acting pretty much like himself. With these changes in place, we were ready to see the chiropractor again, pleased to report the improvements we’d seen, thanks to the supplements he’d recommended.

During the previous appointment with the doctor, Alex slumped in the chair, keeping his head down, and acting as though he could barely stay awake. This time, he happily skipped into the doctor’s office, smiled the entire time, and looked much healthier. Pleased by the changes, the doctor offered one suggestion to try to get Alex to start talking again: increase his multivitamin dosage while remaining at the same doses for all other supplements, which seemed to be helping, especially the combination of bioflavonoids and vitamin C that work together well. The next three days, we gave Alex an extra multivitamin and discovered this was not a good addition because he became agitated, easily angered at times, and silly at bedtime, giggling in his room about nothing. We took him off this extra vitamin, and he has stopped these negative behaviors. Sometimes it’s best to leave well enough alone. Although we hope he’ll start talking again soon, I think it’s just a matter of time, especially considering the improvements we’ve seen the past few months. He can talk, but for some reason, he’s just choosing not to speak. However, on my birthday, I had a nice surprise. As I lit the candles on my cake, Alex suddenly started singing “Happy Birthday” on his own without any prompting. That was the best present I received, for it reminded me that he is getting well, which has been what we have been praying for all along.

“Such a prayer offered in faith will heal the sick, and the Lord will make you well.” James 5:15

Wishes

Today is my 49th birthday. The other day as I was visiting with a group of several of my friends, I realized that I have very few friends who are my age. Most of my friends are at least ten years older than I am, including my closest girlfriend, my mom, who is 21 years my senior; others are fifteen or more years younger than I am. One of my young colleagues even affectionately refers to me as “Mom,” which is fitting since I am older than her mother, and she is only a few years older than Alex. While I enjoy the energy and enthusiasm of my younger friends, I feel relief that I have gotten past some of the obstacles they face. My older friends have wisdom they have gained from experience, and while I look forward to acquiring insights, I’m in no hurry to get there. In other words, I’m content to be the age I am.

When Alex was born, I was 29 years old, and I was 33 when he was diagnosed with autism. Although at times I wish I were younger when he was born so that I would have had more energy to deal with his teen years, I know that the maturity I had gained in my late twenties and early thirties helped me deal with the uncertainties of raising a special needs child. I try to have faith that I’m right where I’m supposed to be.

Nearly a year ago, I wrote in my blog entry “Making Wishes” about how whenever I blow out my birthday candles, I wish for Alex to be better. After a summer where we have had some setbacks due to his allergies, along with some comebacks due to proper treatment of those allergies as well as some signs of healing that occurred over time, I will still wish for Alex to be better. Perhaps knowing that I’m only a year away from the half-century mark of age has made me bolder, but I think I’m going to try three wishes this year. Besides my annual wish for Alex’ improvements, I’m going to wish that I, too, continue to improve. As Ed and I get older and Alex moves into adulthood, I worry about what will happen to him. Even though God has always taken care of us, I still try to micromanage our future instead of just turning things over to God. I keep working on that childlike faith that Alex exhibits and need to trust completely that everything will be all right. So, I wish that I would be more faithful and less fearful with age. My third wish can be found on a t-shirt I recently ordered from the National Autism Association. On the front is a picture of a shooting star with the words, “If I had just one wish…” followed by the wording on the back, “I’d wish for a cure for autism.” As thousands of children and their families deal with the issues of autism, I know this wish is a wonderful one. If a cure for autism were found, I wouldn’t have to wish for Alex to be better, and I wouldn’t be fretting about his future. So, as I blow out my candles later today, I wish for a cure for autism—and soon. With that, I share my birthday blog entry from last year, “Making Wishes.”


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

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

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

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

Alex's Tunes

When Alex was about ten years old, he—like many boys that age—found profanity funny and tried to shock us by cursing. Knowing that making a big deal of his swearing would only make him want to do it more, we calmly explained why he shouldn’t use certain four-letter words and tried not to react much when he said them. Since he knew he wasn’t supposed to say the bad words, he decided instead to write some “songs” with PG-13 lyrics. He typed them neatly on his typewriter, and one day when I was stacking his various typed lists, I ran across two pages of the "lyrics" he’d composed. Even though I wasn’t thrilled with his topic of inspiration, I had to admit that he had some interesting ideas, so I saved his work and put it away in a drawer for safe keeping. Now I’m glad I’ve kept them all these years because they’re pretty amusing.

In all there are four songs, each of which he’s titled as “The _____ [word he’d been told not to say] Song,” and he added the time length in minutes and seconds, as he had seen on CD covers, such as 3:36. His songs vary in length from 3:06 to 4:06, according to what he’d written beside each song’s lyrics. A common theme in these tunes is that he knew he was not supposed to say the words. For example, he wrote, “Don’t type bad words on the Internet…not nice—don’t say or type or write or look up bad words. They’re not good; you don’t say bad words.” [The punctuation is my editing; it’s the English teacher in me that can’t stand run-ons, even if they’re free association from the mind of a ten-year-old with autism.] Moreover, he wanted to know what they meant because he kept writing about looking them up in a dictionary. For example, he wrote, “You [He referred to himself as “you” because he mixed up his pronouns.] don’t know what [Here he lists three curse words.] mean. Buy the word dictionary that includes [Here he lists the same three words.].” In another song, he showed his understanding of how censors edit curse words by bleeping them out: “You not spouse [sic] to say [four-letter word] on TV or radio; if you say it on TV, they make the noise, and you can’t hear what there [sic] saying.” Besides his references to media censorship, he took a religious perspective in the same tune, as he commented, “Even God doesn’t like it.” As I recall, I called in a higher authority figure on this behavior, thinking He might make a greater impression upon Alex and his potty mouth than Ed and I were making at the time.

The last tune of the four is entitled “The Shut Up Song,” in which Alex explained, “The only bad word you know what [it is] is shut up—means be quiet. Thats [sic] rude, not a dirty word.” He showed some frustration that he couldn’t figure out the meaning of the other three words about which he’d written songs: “You will never know what does [three profanities] mean.” However, he seemed to have some sense of right and wrong because he concluded those lyrics: “I don’t like that to talk; bad language is not good for Alex.” Although Alex has always struggled with I and you pronouns, referring to himself as “you” or “Alex,” he never uses “I” to refer to another person. However, when he feels strongly about something (such as “I hate popcorn!”), he correctly uses the pronoun I, which makes me think he knew he wasn’t supposed to use the words that inspired his original songs. I find it interesting that he chose to express his feelings as “songs” because Alex very rarely sings. Moreover, his lyrics, unlike most songs, have no particular rhythm or rhyme schemes; his form of poetry, like his father's, is written in free verse. Nonetheless, I’m glad that he decided to type his thoughts because they give us insight as to what he was thinking at the time. I have to admit, though, what pleases me most is that he outgrew his fascination with “bad words” to the point he never says anything that a TV censor would have to bleep. I think God would like that, too.

“Instead, glorify His mighty works, singing songs of praise.” Job 36:24

Annoying Toys

A few days ago, I ran across a really funny blog entry on The Stir by Linda Sharps entitled “The Most Evil Baby Toys Ever Made.” As I read through her descriptions about what made these seemingly innocent toys, such as the Fisher Price corn popper, jack-in-the-boxes, and wooden puzzles, so humorously heinous, I remembered a few of Alex’s toys that drove me crazy. Often these toys were purchased as gifts with the best of intentions, hoping they would help his fine motor skills and/or his delayed language issues. Once Alex received them, however, we realized just how annoying these toys really were.

For example, we gave him the game Lucky Ducks, a motorized home version of the Duck Pond game he likes to play every year at the county fair. Little plastic ducks move along a conveyor, and the child matches the colors on the bottom of the ducks. Besides teaching colors and sorting skills, we hoped having to grab the moving ducks would be good for Alex’s fine motor skills. However, we did not know just how loud and irritating the realistic duck sounds that the game makes would be. Despite Alex’s sound sensitivities, he didn’t seem bothered by the constant quacking that made me feel we were living on “Old MacDonald’s Farm.” Perhaps my dislike of all poultry, other than in the form of baked, fried, or grilled chicken, made me overly annoyed by these little ducks. Even going to a different room while Alex played the game didn’t help matters; the insistent quacking carried throughout the house. I shared my frustration about Lucky Ducks with my autism mom friends online, and one of them had the perfect solution. Her e-mail response to me, entitled, “Shushing the Ducks,” suggested placing a piece of duct (or should that be “duck”?) tape over the speaker holes on the bottom of the game. Could something so simple work so well? Yes, those ducks were muffled by a piece of tape, allowing Alex to continue enjoying the realistic sounds while not subjecting anyone else to the duck’s squawking, so everyone was finally happy. I always wondered why, however, Lucky Ducks did not come with a mute button or a volume control; I suspect this may have been a conspiracy by the manufacturer Hasbro to entertain kids while annoying their parents at the same time.


Another toy we gave Alex was bought with good intentions but wound up being nearly as annoying as Lucky Ducks. Since Alex had hyperlexia, or precocious reading skills, I followed hyperlexia research carefully when he was little. On one of the sites where parents shared ideas, one parent had recommended the game Who Am I? [or maybe it was called What am I? The game is no longer available, and maybe my mind has tried to block all memories of this game.] as a way to improve language skills. This electronic game had a four by four grid of squares, with a picture of common items or animals on each of the sixteen squares. The game was similar to Twenty Questions in that the child tried to narrow down the objects, using clues to help categorize the intended object. For instance, for the first clue, this talking game might say, “I’m big.” The child might then touch the car square. If that were incorrect, the game might say, “I’m gray.” Then the child might choose the elephant square, and the game would tell the child that answer was correct. In theory, this was a terrific game for Alex, to teach him to point to objects, listen to directions, and learn to categorize items. However, for some reason, the manufacturer decided to hire someone with the most obnoxious voice on earth to record the verbal cues. When a button was pressed incorrectly, the voice would say in a snotty tone, “NO, I’m BIGGER than THAT!!” or “NO, I’m RED!!” Underneath that nasty response was the unspoken follow-up, “You big dummy!!” While I didn’t appreciate how incompetent that game made me feel, Alex never seemed to mind being corrected by the evil voice; in fact, he seemed to find the comments funny. Thankfully, he doesn’t seem traumatized by the game voice’s overly harsh criticism; his self-esteem remained intact. However, I wondered how many other kids might have felt as stupid as I did when they, too, played this game. I believe the nasty voice may have led to its demise on the toy market. I hope so.


Along with noisy and snide electronic toys, any toys that had numerous pieces held no affection for me. My younger sister, who didn’t have children until Alex was older, had a habit of giving Alex toys that had lots of parts to scatter/step on/lose. I vowed revenge on her, promising that when she had children, I would get them similar multi-piece toys. However, I didn’t follow through on that plan, knowing how all those pieces had driven me to distraction and not wanting to inflict similar pain upon her. To help Alex’s fine motor skills, he had various multi-piece building blocks: wooden, plastic, and the ever annoying Legos, which when stepped upon in bare feet cause shooting pains and involuntary adult verbal tirades. Interestingly enough, Alex had no interest in building anything with blocks. Maybe his lack of fine motor skills made him less likely to build using the toy blocks. I suspect he preferred demolition to construction because he found great pleasure in knocking over any of the buildings we made to model for him how to put the blocks together. Like a tornado, Alex’s hands rapidly destroyed our block handiwork, and he giggled as he did it. Of course, this meant all those blocks went flying around the room, and cleanup wasn’t one of his favorite tasks. Despite our best efforts, some blocks remained elusive, only to be found accidentally by my bare feet. As I think back on these remnants of our past, I’m thankful that Alex enjoyed these toys that annoyed me so much, but I’m more grateful that he’s outgrown them so that I don’t have to listen to them, or step on them, for that matter.

“So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can. “ Ecclesiastes 3:12

Challenges Faded

About the time Ed and I think that Alex will never get past some phase, his behavior changes, and whatever challenge we’ve been facing fades away. Earlier this summer, Alex suddenly developed an aversion to going places. To get him to go someplace, we’d have to encourage him to get in the car and assure him that he’d have fun. Maybe we were a little too enthusiastic in our promoting the rides in the car; he would look at us askance as we clapped, talked in overly cheerful voices, and motioned him toward the door, saying, “C’mon, let’s go!” Despite our best efforts, Alex wasn’t about to budge from his comfortable seat on the couch. Thankfully, he’s gotten past that phase and now will eagerly go anyplace anytime. He doesn’t even need to know where we’re going; he jumps up and heads for the door. A few days ago, I mentioned to Ed that I was going to make a quick run to the grocery store, and Alex immediately came running to go with me when he overheard us talking. Although I had planned to go alone, he was so happy to be going I wasn’t about to deny him the trip to the store.

While Alex had issues about going places this summer, a couple of summers ago, he had an obsession with going to the bathroom with ridiculous frequency. He would run to use the bathroom every commercial break, which meant that he was going several times an hour. Because he had been so difficult to toilet train, we weren’t about to stop him from going, but his frantic runs for the bathroom and subsequent toilet flushing throughout the day did become tiresome. Although we can’t always trace the source of Alex’s obsessions, I had a pretty good idea what had started this one. He had been playing a video game called Bosconian and had become amazingly good. Unfortunately, this game could not be paused, and Alex was skilled enough to play for more than an hour or so. One evening, he had his record high game, which took more than four hours to play. Once he was finished, he came running to use the bathroom, and we wondered how long he’d felt the urge to go but waited until his outstanding game was done. After that, we noticed his frequent trips to the bathroom, which I think was related to that instance of having to wait until he finished his record game. For nearly the entire summer, he went to the bathroom before he would do anything: go places, eat, play a game, watch a show, etc. Apparently, he didn’t want to interrupt any activity to stop and use the toilet. Fortunately, that phase, too, faded with time, and now he uses the bathroom only when necessary, which I’m sure, helped our water bill decrease significantly.

Another challenge Alex has overcome has been his fear of thunderstorms. When he was little, he was terrified of storms, and if he were awakened by thunder during the night, he would have a meltdown. Somehow, he gradually overcame this fear, which came as a great relief to us. A few nights ago, we had a very loud thunderstorm around three in the morning that awakened Ed and me. We listened for Alex, thinking surely that he had to be awake, as well. Ed decided to check on Alex to see if the storm had upset him, and we planned to take him down to the basement if needed, where he couldn’t hear the thunder or see the lightning. After creeping into Alex’s room, Ed discovered that Alex wasn’t a bit upset; in fact, he was sound asleep. Clearly, his sound sensitivity has lessened over the years. Even when Alex does hear thunder now during the daytime, he seems never to be fazed by it anymore. We can’t pinpoint when this change in his behavior occurred, but we’re pleased that his fear of storms seems to have faded away at some point. Whenever we fret about some current challenge Alex has, we try to remember the issues he’s overcome in the past and feel blessed to know that eventually every phase fades with time.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

County Fair

Last week, we took Alex to our local county fair, one of the annual traditions he looks forward to doing every summer. As always, we took him through the livestock barns to see the pigs, cows, sheep, goats, rabbits, and his favorite, the horses. Although he’s not terribly interested in the animals themselves, he does enjoy reading the information cards on each animal’s pen telling data such as its birthdate or weight since he categorizes everything numerically. One of his favorite exhibits features young farm animals, but the real draw for Alex is that each animal pen has a quiz question about that animal, such as, “How many stomach parts does a cow have?” This year, he got every single question on this interactive quiz correct. I’m not certain if he just memorized the answers from previous years, or maybe he actually learned something about the animals from these exhibits.



Besides the animals, we visited the antique tractor tent, where my dad, who grew up on a farm when he was a boy, told more information about these old tractors than the signs that just noted their brand and year of manufacture. Of course, Alex was most interested in the dates on the signs and probably didn’t really care that Grandpa’s dad used a 1930’s Farmall tractor when Grandpa was growing up on the farm. On the other hand, we’re never sure what Alex is absorbing mentally when he has the bemused smile upon his face.



After we checked out the animals and farm equipment, we headed over to the midway to see the rides and games. Because we’re uncertain how Alex would react to the carnival rides, due to his sensory issues, he just watches other people and seems to prefer being an observer, rather than a participant. However, he does like to play the duck pond game, where he chooses three rubber ducks from the water and is guaranteed to win a prize. The woman who ran the duck pond booth this year was especially kind to Alex, patiently showing him his options for prizes and waiting until he was ready to choose from three different stuffed animals. This year, he chose a blue stuffed snake, which he carried around at the fair and has continued to carry around the house since then.


With the hot weather, I was pleased to find a misting station in the midway, where people could stand and be sprayed by a cool water mist. Alex wasn’t as eager to try this cool treat, but he finally tried standing under the refreshing spray. Before we left the fair, we decided to get cold drinks and relax at a picnic table under the shade of a tent. I told Ed to get large drinks, not knowing that the large cups were 32 ounces. Alex must have been thirsty because he downed his 32-ounce Sierra Mist rapidly and then drank about half of Ed’s Pepsi. As we watched Alex enjoy his time at the fair, Ed and I remarked about how he’s changed over the years. When he was little, we wheeled him in the stroller, then for several years we both held onto him tightly as though he were a fugitive about to escape, later we took him in a transport chair so that we could easily wheel him through the crowds, and now he walks with us, a young man confident about where he’s going. The only thing he didn’t seem to like was having his picture taken. Maybe he really is a typical teenager after all, and our trying to capture those “Kodak moments” embarrasses him. We were pleased by how well he handled himself despite the noise, crowds, and various smells, but we were most pleased that he really enjoyed himself during this annual trip to the fair.

“God made all sorts of wild animals, livestock, and small animals, each able to produce offspring of the same kind. And God saw that it was good.” Genesis 1:25

Summer Recreation

I am not a traveler. As my sister and her family headed off this week for a summer vacation in Myrtle Beach, I was happy for them but even happier that I didn’t have to go anywhere this summer. My aversion to car trips, I’m sure, was shaped by our annual summer treks to see my mom’s family in West Virginia. While I was delighted to get there and visit my relatives, the journey there was not fun. Of course, this was in the 1970’s when kids didn’t have personal DVD players, handheld video games, IPods, or cell phones to keep us amused during a nine-hour trip. Nope, I had a book and a stack of Tiger Beat magazines to pass the time. My parents and we three kids would pile into our version of the Griswold family truckster [from the movie Vacation], a Buick Estate Wagon, and make the trip southeast. My mom would pack a nice assortment of snacks for the trip, including cheese and peanut butter crackers that left orange powder on our hands, seats, and car mats. One year, the three of us plowed through a box of Bugles corn chips less than a half hour into our journey, leading my mom to complain and later be quoted through the years, “You ate all the Bugles, and we’re not even to Wheatfield!” [a real town in Northwest Indiana about 30 miles from our hometown] My dad did all the driving and insisted on complete quiet, which meant that any territorial disputes within the car between siblings had to be settled through dirty looks so as not to disturb our driver and risk his wrath. Moreover, he saw no need to stop unless we needed gasoline, so we learned to ask for bathroom breaks only when absolutely necessary. I don’t think he intended to be a tyrant about things; he just focused on getting there and making good time instead of making the getting there a good time.

After Ed and I were married and went on some car trips of our own, I began to experience some déjà vu, minus the family station wagon and sharing salty snacks with my siblings. Like my dad, Ed preferred to travel in silence, although we could listen to music at times, and he also stopped infrequently for rest or bathroom breaks because he, unlike me, rarely needed to stop and rest or use the facilities. To pass time, I would read books or People magazines, but I discovered the best way to pass time (and not think about having to use the bathroom) was to sleep. Ed even wrote a poem [“Driving North at Nightfall”] that mentions my penchant for dozing in the car while he notices the landscape along the way. Anyway, my lack of affection for traveling has made it easy to accept that we can’t vacation with Alex; this has not been a sacrifice for me. Since Alex is on a restricted diet due to his food sensitivities, planning what he can eat away from home would be a tricky task. Also, his previous history of meltdowns in the car makes us reluctant to take him on a long car ride, lest risking being hit, kicked, or pelted by objects thrown by our backseat driver, should something along the way annoy him. Moreover, Ed and I always have various escape routes and diversion plans for known places that may not necessarily work for strange places, so we’re not eager to put ourselves in situations that could be potentially dangerous, or at least embarrassing, should Alex pitch a fit. And so, this summer, I look over the vacation pictures my friends have shared on Facebook and don’t feel a twinge of jealousy, pleased that Alex’s unpredictable behavior has allowed me to sleep in my own bed, use my own clean bathroom, and avoid being cooped up in the car wondering when we can stop and get out.

Knowing that summer vacation should be a time of new adventures, however, Ed and I have worked at trying to give Alex opportunities to do fun things during our autism-imposed “staycation.” When he was younger, Alex liked to wander around the backyard and play in the sprinkler, but he’s outgrown those activities, leaving us to find things to do close to home. We’re big on free or cheap entertainment in case we have to leave quickly with Alex, so as not to compound the frustration of changed plans with wasted money. This summer, we have taken Alex to “Wonderful Wednesdays,” the weekly noon free concerts at the Valparaiso University Union, which have been terrific. We’re on familiar territory there, and Alex enjoys listening to the singer-guitarists while we sit and sip soft drinks. In addition, we’ve taken him to Dairy Queen for slushes, a local coffee shop for root beer, and family restaurants regularly for meals. He also likes going to our local arcade to play their Deal or No Deal video game. One of our daily activities is shared computer time in which, thanks to our wireless router and each of us having our own laptops, we are all on our computers at the same time. Ed checks out literary journals, current events, and political websites; I play video games, read entertainment news, and spend time on Facebook; and Alex does math research, checks out electronic gadgets, and Googles a variety of topics he wants to learn. For something new, Ed bought Alex an inexpensive digital camera and has taken him to our city parks to take pictures, which he seems to like doing. Alex’s favorite pastime, however, is grocery shopping at Walmart, where he likes strolling the aisles, pushing the cart, and smiling in amusement the entire time. For him, this is Disney World. While I guess we should be thankful that he finds fun in such a common activity, we still keep looking for summer recreation to keep him interested and busy. Besides, I’m hoping to do something worthy of good photographs to post on my Facebook page and/or material to write for the blog. With four weeks of summer vacation left, I’m sure we’ll find it soon.

“So I recommend having fun, because there is nothing better for people in this world than to eat, drink, and enjoy life. This way they will experience some happiness along with all the hard work God gives them under the sun.” Ecclesiastes 8:15

Suggested Remarks

A few days ago Parents magazine posted an article on its website called “7 Things Not to Say to Parents of Kids with Special Needs.” This feature came from Ellen Seidman’s blog To the Max, where she writes about raising her son who has cerebral palsy. While she clearly states in this article her frustration with people who say awkward things to her about her child, I can summarize her suggestions into three basic areas. [Her article can be accessed by clicking HERE.] First, she does not want pity for her child or herself, and I can relate to her feelings on that matter. However, I think people sometimes confuse pity and sympathy, and others aren’t certain what to say to show that they care about the parent who is dealing with a special needs child. Another comment she thinks is improper is asking about what skills a child has mastered, for example, whether the child is walking yet. Again, I suspect that people are trying to express interest but don’t know how to show this in ways other than by making remarks that may be construed as judgmental or just plain nosy. Then in the next three items, she gives examples of remarks that focus upon the child’s appearance when people say that the child looks “cute,” “normal,” or happy. While she views these comments as negative, I value that someone is trying to find the positives in the situation and be complimentary, albeit in perhaps a less than articulate way. Finally, she lists the following remark as taboo: “You are a saint.” She asserts that she is just like any other mom, trying to help her child. The thing is, parents of special needs children do have different challenges than other parents, although not worthy of sainthood, but certainly buoyed by compliments that recognize the job we are doing in raising our children. When people have said kind things to me about my parenting, I appreciate their comments, which give me support and encouragement. Although I admire Ms. Seidman for expressing her feelings candidly about comments she finds hurtful, I realize that I see things slightly differently as a special needs parent than she does, maybe because I’ve been in this game of Chutes and Ladders longer than she has.

Even though I tend to be overly sensitive to people’s remarks, even to the point of being somewhat paranoid and assuming that people don’t like me unless they openly declare admiration and affection, I guess I try to assume that people have good intentions. Because I have been blessed with people who have shown thoughtfulness and concern for how autism has impacted us, I would take a different approach and suggest things to say that would be positive and reflect the support they are trying to show. My list of “What to Say to Parents of Kids with Special Needs” would include the following:

1. Focus on the positive with a genuine compliment for the child, such as, “He has a great smile.” or “He is so smart.” or “He’s really a great kid.” All of these examples were said to us about Alex, and as a mom, they filled me with pride.

2. Ask about the child’s interests and activities, just the way you would about any person you wanted to know better. For example, the questions “What is he interested in lately?” and“ What does he like to do?” treat the child as typical and allow the questioner to know more about the child’s personality.

3. Express support for the parents by commenting on their strengths. Parenting is often a thankless job, and parenting a special needs child adds extra responsibilities to that load. Comments like “You are wonderful with him.” and “You’re doing a great job.” lift parents’ spirits. I appreciate kind words and have been blessed by great friends and family who reassure me often. In other words, if you have something nice to say, I encourage you to say it.


This article regarding what not to say came as I have been mulling Alex’s schooling lately. This past week Ed and I have been in situations where we were asked questions about Alex and whether he was going to college now that he’s 19. When Ed was buying an anniversary card for me a couple of weeks ago, the clerk asked him how long we’d been married, how many kids we had, and how old they were. Even though his native New Yorker personality makes him bristle at personal questions from strangers, he’s been in the Midwest long enough to be nice about answering them anyway. He told the clerk we’ve been married 23 years and have a 19-year-old son. The clerk then asked where our son was going to college, and Ed told her that he’s not going to college, to which she replied, “Oh, he probably will eventually,” not knowing Alex has autism. Similarly, I saw an old friend who moved away several years ago but was back in town for a visit with family last week. Although she knows Alex has autism, she asked if he is going to college, commenting on how smart he is, and I told her no. In both of these situations, people were trying to be nice, so neither Ed nor I were offended by their questions but appreciated their interest. In contrast, I found numerous comments in response to the Parents online article reflected a needless hostility. Parents of special needs children resented questions and remarks from people who didn’t understand, and people who did not have special needs children accused the parents of being overly sensitive. What was intended to bring people together created a rift, which is sad. However, I do believe that most people are good at heart, and while people need to choose their words carefully, we also need to listen carefully to the true meaning behind those words. In talking about any child—special needs or not—I hope people focus upon the good, making their remarks truly remarkable.

“Some people make cutting remarks, but the words of the wise bring healing.” Proverbs 12:18