Halloween

Last weekend, we took Alex to a local orchard to pick out his Halloween pumpkin, which is an annual ritual he anticipates every October. For many years, we took him to Keel’s Country Corner, a nearby pumpkin farm that closed a few years ago. Although the idea of choosing a pumpkin doesn’t seem to excite Alex as much as it did when he was younger, he still enjoys the ride to the outskirts of town and the chance to select from a variety of pumpkins the one that will be his. While his lack of dexterity prevents him from carving a pumpkin, he does like decorating one. Several years ago, we found a kit that contains colored translucent pegs, similar to those found in a Lite Brite set, that are placed in the pumpkin to form a face, along with a small flashlight to illuminate them from the inside. Much safer than knives and candles, this is a terrific option for him. Although I have to scoop the inside of the pumpkin and poke the holes, Alex can put in the pegs to decorate the pumpkin himself.

Like most kids, Alex looks forward to Halloween, and when he was younger, he liked dressing up in costumes and going trick or treating. Of course, his difficulties in saying his r’s made his request sound like, “Twick or Tweat,” and we had to explain to him that people's opening their doors to him did not mean that he was invited to come into their homes. He would keep reminding himself, “Don’t go in people’s houses!” as we walked along. Because of his restricted gluten-free and dairy-free diet, he wasn’t able to eat most of the goodies he acquired in his treat container, but the fun for him focused upon dressing up and ringing people’s doorbells. Beginning in early October, Alex and I would discuss what he wanted to be for Halloween, and then I would start working on the costume he’d requested. Where we live in Northwest Indiana, we must always include warm clothing as part of the outfit since it could easily snow at the end of October. I learned quickly how to incorporate sweatshirts and sweatpants in various colors as part of his costumes, or I made costumes that were roomy enough to accommodate sweats underneath them. In addition, we tried to come up with hats or headpieces as part of the costume that would also keep his head warm and dry in damp and cold weather. Because of his sensory issues, Alex would never wear a mask of any kind; therefore, we had to make the costumes definite enough that he didn’t need anything on his face to tell who he was supposed to be. For his first Halloween when he was just a few months old, my mom found a baby devil costume with a red tail, horns headpiece, and bow tie. He wore those accessories with red fleece footed pajamas for comfort and warmth. The next year, I made him a costume out of a white sweatshirt and sweatpants, some white, purple, and gold material, and a blue feather to transform him into Aladdin as the prince, from the video he’d watched over and over. I was particularly pleased with how the turban turned out and even happier that he was willing to wear it. The next year, I made him a Bugs Bunny costume out of gray sweats but had trouble getting the ears to stand upright. Alex liked the costume, though, but he didn’t like wearing the white knit gloves that were designed to look like Bugs but also to keep his hands warm. The next year, he dressed like Raggedy Andy, complete with the plaid shirt, navy pants with buttons, red and white striped socks, and the red yarn hair I attached to a sailor cap. After seeing a clown at the county fair the following year, he wanted me to make him a clown suit; out of brightly colored fabric I fashioned a loose tunic and baggy pants that allowed sweats underneath them. He wasn’t too thrilled about the crazy blue curly wig to go with it, so we left that at home. The next year, I didn’t have to make him a costume because he found an old one my mom had made of a pumpkin, which he thought was great. With a green sweatshirt and sweatpants underneath the orange pumpkin, he was ready to go. For his preschool year when he was into reading Dr. Seuss, I found a red and white striped felt hat that made him a perfect Cat in the Hat. With black sweats and a big red bow I made, he created much less mischief than the Cat ever did. The next Halloween, I found a fabric Reese’s peanut butter cup candy wrapper that made a tunic with a few simple seams to be worn over sweats. Of course, we gave out Reese’s cups that year in keeping with the theme.

As Alex got older, he requested costumes that required less sewing on my part. One year, he wanted to go as his favorite NASCAR driver, Mark Martin, and we found him a long-sleeved racing t-shirt and a Ford Racing hat to top off—of course—sweatpants. Another year, he wanted to go as Chicago Bears football player Brian Urlacher, which only required finding him a number 54 jersey to go with navy sweats. The next year, he decided that he’d like to be a doctor, so I thought that making surgical scrubs would be easy, but I was wrong. After struggling with the neck of the shirt, I wished I’d simply bought him scrubs instead. With his stethoscope around his neck, Alex looked really good, which made the effort worthwhile. His final trick-or-treating costume was literary character Harry Potter. After putting him in a dress shirt and pants, necktie, and my college graduation black gown, he was willing to wear Harry’s style of glasses to look the part perfectly. Out of all of Alex’s Halloween costumes, his favorite was no surprise to us; he liked the calculator costume I made out of felt when he was nine because he loves math. In many ways, he is a calculator with his mathematical skills, so this costume probably represented him best. What pleases me most, however, is that whenever Alex thinks back on the Halloween nights of his childhood, he tells in an animated way about the costumes he wore, which brings a smile to his face and to ours.

“The king of Israel said to Jehoshaphat, ‘As we go into battle, I will disguise myself so no one will recognize me, but you will wear your royal robes.’ So the king of Israel disguised himself, and they went into battle.” I Kings 22:30

Funny Remarks

As I mentioned in an earlier blog post “Comedian,” Alex has a surprisingly good sense of humor for a person with autism. While he likes to make people laugh by saying things that he knows are funny, he often makes us laugh by saying things that are unintentionally amusing. Part of what makes his comments entertaining is that he sees the world in a different way than most people do. For example, one time when he was little, he was being bothered by a fly on our back porch and decided to go inside to get away from the pest and the noise it was making. On his way in the house, he grumbled in disgust, “It’s too buzzy out here!” His description was not only onomatopoetic, but it was also funny to us. Similarly, when he was a little older, he was riding in the back seat of the car as I was driving, and he began complaining about a noise he heard as we backed out of the driveway. Because he was just muttering at first, I ignored his complaints until he became quite animated and yelled like a grouchy old man, “It’s getting really loud back here!” While I found his reaction amusing, I took his aggravated tone seriously, pulled back into our driveway, and discovered that the back wheel was coming loose from the axle. Alex’s irritation by noises alerted me to danger, but it also made me laugh from what he said to get my attention.

When Alex was a baby, I used to sing to him, as many mothers do with their babies. Unfortunately, I cannot carry a tune, and Alex was honest enough to let me know what he thought about my lack of singing ability once he was able to say a few words. One day when I was serenading him, he lifted his hand to my lips, shook his head, and said, “Mommy no sing!” To make sure I’d understood him correctly, I asked him if he liked my singing. He shook his head and told me most definitely, “No!” The earnestness in his face, combined with his comment and attempt to silence me with his hand, struck me as funny because it was true: Mommy no sing! (As the old saying goes, “Out of the mouths of babes.”) When he was a little older, he once again took on the role of being my critic. Lying on the couch feeling lousy with flu, I noticed preschooler Alex examining me with a concerned expression on his face. He told me, “Mommy doesn’t look good.” Pleased that he was showing sympathy for me in my illness, I told him that I didn’t look good because I didn’t feel good. He thought about that for a minute and studied my face a bit more. Then he had an epiphany: “How about some lipstick?” I guess he thought if I put on some makeup and looked better, I might feel better, too. Actually, he made me feel better because his comment made me laugh out loud—the medicine I really needed, even more than lipstick.

In addition to critiquing me, Alex has also made some amusing comments about his own appearance. While he generally doesn’t worry too much about how he looks, he does seem to care about his hair, combing it and letting me know when he thinks he needs a haircut. When his hair gets to be what he deems is too long, often because his cowlick begins sticking out, he’ll inform me that he has “crazy hair.” Revealing his scientific mind, Alex will tell us—in his inimitable way— when his hair is sweaty from running around playing that he has “condensation hair.” Although Ed has escaped having Alex make fun of his appearance and singing, he has been under Alex’s humorous scrutiny for the way he talks. Growing up in Indiana, Alex has developed a Midwestern accent, despite being exposed to my somewhat Southern drawl and Ed’s way of speaking, learned from his youth in Brooklyn, but less obvious over time spent away from New York. Fortunately for me, Alex thinks I talk normally, but he enjoys making fun of the way Ed says certain words. He’ll teasingly mock Ed for saying “dunky” for donkey, “maynaze” for mayonnaise, “alahm” for alarm, and “farin” for foreign. He can imitate Ed’s New York accent to a tee, which makes me laugh. I especially enjoy when he does this because usually Ed and Alex gang up on me and find it terribly amusing to make fun of me. As Ed explains to me, his teasing is simply a way of showing he loves me. I’m pretty gullible, but I like the explanation anyway. I suppose that Alex’s amusing comments about us, then, could be considered his way of showing love for us. If nothing else, he keeps us entertained with his funny remarks and his unique perspective on life.

“He will once again fill your mouth with laughter and your lips with shouts of joy.” Job 8:21

Fears Relieved

One of my favorite lines from the old hymn “Amazing Grace” is in the second verse: “And grace my fears relieved.” So many times through the years I have worried about Alex, only to have my fears relieved. For example, when Alex was a baby, I noticed that he had an indentation in his breastbone that I pointed out to his pediatrician. The doctor diagnosed this condition as pectus excavatum, or funnel chest, and told us that the dip in Alex’s chest was probably more of a cosmetic issue than a medical one. However, he went on to tell us that if Alex developed breathing problems from having the breastbone pressing on his lungs and constricting them, he would need surgery. Apparently this surgery is “rather grueling,” as the pediatrician explained, because it involves restructuring of the breastbone. As Alex grew, I would watch his chest rise and fall and listen for his breathing, praying that he would never need this surgery that scared me so. Thankfully, as Alex grew, the dip in his chest became much less noticeable, and his breathing was never compromised by the irregularity in his breastbone, which meant that my prayers were answered, and my fears were, indeed, relieved.

As Alex became older, I had new worries, primarily concerns about how he would react to situations that might involve pain for him. While all parents want to spare their children pain, with Alex we had to worry that he also might have a meltdown if he were hurt. The first time he needed a blood test, I was concerned that he would be upset by the needle, the pain, and the blood. However, Alex found the blood draw fascinating and never complained a bit. As the nurse commented, he handled the blood test better than many grown men she’d seen have blood tests. When Alex had his annual blood test a few months ago, a new nurse suggested that he look away, and I assured her that he preferred to watch the process. She was amazed by how unfazed he was by the test, but having seen him calmly sit through many blood tests, Ed and I were not surprised, just pleased that he was enthusiastic instead of upset. Similarly, I was concerned when Alex began losing his baby teeth, he would be unnerved about teeth falling out of his mouth and the blood that followed. I should have known that since money was involved—in the form of the Tooth Fairy’s reward—Alex thought this was fun. Later, as he lost his baby teeth and gained all of his permanent teeth, I fretted about what might happen when his wisdom teeth erupted. Having had all of my wisdom teeth removed by the age of sixteen due to crowding issues, I was concerned that Alex would need to have his wisdom teeth extracted, as well. His dentist told me that Alex could have them removed under general anesthesia, should that be necessary. Like the chest surgery, however, I prayed that Alex could avoid this ordeal. His dentist went on to reassure me, “We’re not going to worry about that, Mom, unless they’re a problem. Let’s assume that they’re not going to be a problem.” He was absolutely right; fortunately, Alex’s wisdom teeth have come in fine and have not required surgery to remove them.

One of my greatest fears concerning Alex was one I didn’t share with anyone for a long time. When I suspected something was amiss because of his language and toileting delays, I was terrified that social services would come and take him away from us. I thought that his failure to make progress might be attributed to negligence on my part, even though I knew I was moving heaven and earth to try and help him. I had read articles about children with developmental delays who were taken from their homes, and then the parents were found innocent when the error was realized regarding the real reason for the problems. Once I realized that my fear was unfounded, I was able to pursue therapies for Alex without a frantic feeling. Now that Alex is a young adult, I find myself again fighting fears about what the future will bring. While I rely on my faith, sometimes those nagging fears sneak up on me, and I have to remember all the prayers God has answered and know that He will protect Alex. As I fight my fears, the third verse of “Amazing Grace” offers me comfort about Alex’s future: “Through many dangers, toils, and snares, I have already come; ‘tis grace that brought me safe thus far, and grace will lead me home.”

“So don’t be anxious about tomorrow. God will take care of your tomorrow, too. Live one day at a time.” Matthew 6:34

Red Flags

Although Alex was not officially diagnosed until shortly after he turned four years old, we had been suspicious for about a year earlier that he had autism. When we took him for his annual physical exam at age three, we shared our concerns about his language and toilet training delays with his pediatrician, who assured us that Alex was very smart and that his delays were solely because he was a boy. Indeed, he did not meet any of the criteria for early diagnosis of autism: not smiling by age six months; not babbling, pointing, or using other gestures by age twelve months; not using single words by sixteen months, not using two-word phrases by twenty-four months; or having a regression in development with any loss of language or social skills. Alex could do all of these skills at the prescribed times and never had a regression, just a plateau where he didn’t seem to make much progress. While he couldn’t do some of these skills well, he could, nonetheless, do them. When we took him to the pediatrician a year later with the same concerns that Alex was not potty trained, nor could he speak well, his doctor finally understood our worries. He asked me what I thought the problem was, and without hesitation, I told him, “I think it’s autism.” That began our journey of evaluations that proved my maternal instinct correct.

Because Alex is our first and only child, we didn’t realize how different he was from other children. In addition, he didn’t have playmates his age, so we couldn’t compare him to his peers who were developing typically. The few times that he was around children his age, he interacted appropriately, even though he tended to be more reserved than others, which we attributed to shyness. Moreover, we thought that some of his unusual interests, such as looking at books without pictures and watching the Weather Channel, were the result of spending so much time with adults because he was with Ed and/or me nearly every waking minute of the day. Even some aspects which we thought were positive were perhaps early signs of autism. For example, Alex’s head measurements every time he went to the pediatrician were in the 90th percentiles. His head never seemed that large to us, and now that he’s nearly fully grown, his head is average in size. When he was little, his doctor used to tell us jokingly that Alex’s head was big because he had more brains than other kids his age did. Several years later, I would read that children with autism often have larger than normal head size. In addition, he has always been remarkably healthy, which we have considered a blessing. Other than projectile vomiting when he was a baby, which was likely an allergic reaction to milk before we knew he didn’t tolerate milk proteins well, he was never sick. Like his seemingly very healthy mother, Alex likely has autoimmune issues, another concern related to autism. Before Alex’s diagnosis of autism, which led me on a quest to research the condition, I had no idea how much autism impacted physical as well as behavioral aspects of development and didn’t recognize some of these details as related to the disorder.

In watching the videos of Alex’s early years objectively, we can now see some of the early red flags warning that he had autism. His sensory defensiveness was evident as he was bothered by loud noises, covering his ears and even crying when startled by sounds. When drinking from his baby bottle, he would tilt his head back and stare into the light bulb in the lamp located next to the chair where we fed him. He also had an uncertainty in his walk, which was probably related to his balance and sensory problems, tilting his head and walking on his toes, a common characteristic of children with autism. While he would notice objects and try to call our attention to them, he would do this by touching things with his hand flattened instead of pointing with one finger, or he would take our hands and have us touch the object. As a baby he would amuse himself by waving his hands in the air; this later took the form of stereotypical autism hand flapping, where he would get excited and look like a baby bird trying to take flight. As a toddler, he was difficult to carry because he wouldn’t wrap his legs around the person carrying him, as most children do. He would wrap his arms around our necks to help with our carrying him, but we had to hold his legs because transporting him was like lugging a sack of potatoes. Perhaps one of the more unusual early behaviors we overlooked as problematic was his need to line up people when they came to visit. He would take each person by the hand, leading everyone into the kitchen, and one by one, put people in a line, as if he were a photographer lining up subjects to take their picture. We thought this was amusing, and we didn’t stop to realize that lining up things is often associated with autism. I suspect that he needed to have everyone in one place in an orderly fashion so that he could keep track of them at least momentarily. Although early intervention is helpful for children with developmental delays, I often think that not knowing Alex had autism the first few years was a blessing because we enjoyed him, quirky behavior and all, and we enjoyed those early innocent days, not worried about what we needed to do. We still savor those precious times and are thankful that once again we spend more time enjoying him and less time fretting over him.

“Tell us, when will all this happen? What sign will show us that these things are about to be fulfilled?” Mark 13:4

Rediscovery

This past week, Alex seems to be in a nostalgic mood, as he has been busily rediscovering books, toys, software, and handheld electronic gadgets that he hasn’t used in months, or even years. His bedroom, which he has been keeping neat for quite a while, currently looks as though a tornado has torn through it because he’s been sorting through books on his bookshelves, toys in his toy box, and electronic games and gadgets in a basket. In our home office, he has software manuals and CD-ROMs lying on the desk. His desktop computer, which held less charm for him once he got his new laptop this summer, has regained favor as he has been playing old games on it. A few years ago, Alex developed a keen interest in simulation computer games and acquired a nice collection of software that allowed him to plan, build, and run various business ventures. After a while, though, he found Google, Wikipedia, and You Tube more interesting than his computer games. However, this week, he has resumed playing Roller Coaster Tycoon, Mall Tycoon, Restaurant Empire, and Casino Empire. The enthusiasm he formerly held for building roller coasters, malls, restaurants, and casinos has returned, and he gains satisfaction as he watches his plans develop through the sequence of the computer games.

Scattered on Alex’s bedroom floor are books that he hasn’t read in months and toys he hasn’t played with in ages. Among the books he’s studying again are two coin collection books of pennies, the NASCAR Road Atlas, and Mrs. Byrne’s Dictionary of Unusual, Obscure, and Preposterous Words, a gift from a friend who thought I’d appreciate a book whose title contained the name my students call me. I’m not certain why Alex has resumed his fascination with coins, maps, and odd words, but I’m pleased that he knows where to find books that he enjoys. In addition, he’s been pulling out and playing all of his electronic interactive games: U.S. Presidents, Solar System, U.S.A. Map, and World Map. While I suspect that Alex probably knows all the answers to the questions these interactive games pose, maybe playing them again gives him confidence that he has learned the lessons they’ve taught him over the years. He has also been playing with two car-related toys that he’s had since he was little, the Hot Wheels Racing Steering Wheel and the Hot Wheels Auto Tech Service Center, both of which are speaking toys. Since most boys his age are out driving cars, I have to admit that I’m relieved that he’s just dealing with toy cars. Certainly with his motor delays, the Hot Wheels steering wheel is much safer for him to operate than a real steering wheel.

Besides software, books, and toys, Alex has also been digging through his handheld electronic games and gadgets that he has basically ignored for months. He’s been bringing old games to me to put new batteries in them, and in doing his mental inventory, he has realized that some gadgets he previously had have been lost or broken over the years. As I mentioned in a previous blog entry, “Progress Achieved,” Alex had a small tape recorder that he would use after provoking us so that he could record our angry comments. He particularly liked replaying Ed’s earnest request “to stop torturing us,” and my middle school teacher voice insisting that Alex “sit down and be quiet because I’ve had enough!” Because he was driving us crazy with that thing, we hid it where he wouldn’t find it. Apparently, we found a really great hiding place because we can no longer find it, either. This week, Alex located a similar tape recording toy online and decided to purchase it using a gift card his uncle and aunt had given him. If he resumes using that gadget for evil instead of good, we will be mailing that Yadda Yadda Yadda, as it’s called, to Uncle John in New Jersey to do with as he pleases. Another gadget Alex decided to replace this week was his Talking Road Whiz handheld device that tells distances between cities and the locations of businesses along major highways—a simpler, less expensive version of GPS. As I recall, angry adolescent Alex threw the original Road Whiz in a fit of temper, which explains why none of the buttons work anymore, despite new batteries. We found the Road Whiz online, and he put some of his gift money toward a new one. Now he keeps using online tracking to see when these new toys will arrive. The other day, he informed me that he also wants a PDA and has been pricing them on the Internet. Although he wanted one several years ago, we did not get him the Palm Pilot he wanted, as we didn’t think he was responsible enough to take care of one of these expensive electronic aids. Now that he does generally do a good job of taking care of his things and has his own money saved to buy one, he’ll probably add another gadget to his collection. Considering that his father now travels nearly everywhere with a Kindle and an I-Pod Touch, Alex seems to be following in his footsteps with all his electronic accouterments. Despite the fun and excitement that come with new possessions, Alex still likes the familiarity of the old things and gains pleasure rediscovering them.

“Thus says the Lord: ‘Stand by the roads and look; and ask for the eternal paths, where the good, old way is; then walk in it, and you will find rest for your souls.’” Jeremiah 6:16

Self-Image

Like the mythical character Narcissus, who fell in love with his own reflection, Alex enjoys looking at his reflected image—in mirrors, photographs, and videos. Unlike Narcissus, however, Alex doesn’t really care about his appearance. I’m convinced that his interest in seeing his image lies in his search for himself. Several months ago, he found a hand mirror and amused himself by looking at the reflection of his face from different angles and with various facial expressions. Unfortunately, he accidentally dropped that mirror on the bathroom tile floor, where it shattered into little pieces. While I’m not superstitious about the seven years of bad luck associated with a broken mirror, I was concerned that the next time a mirror dropped, he could get cut by the broken shards. Therefore, I went in search of a baby mirror that he could carry around safely to satisfy his need to look at himself, and I found one made by Sassy that was not only safe but also reflected a more distinct image than most toy mirrors do. Alex was delighted with this purchase, carrying it around the house and even sleeping with his new mirror.

Besides looking at his reflection in mirrors, Alex also enjoys watching himself in old videotapes and looking at pictures of himself. Perhaps because we have told him that he is the one depicted in photos and videos, Alex always recognizes himself at any age and seems to find the younger version of himself amusing, laughing and smiling all the while he sees himself in the photos and videotapes. Other people are a bit problematic for him, however, since he doesn’t always recognize people’s faces. For example, he has trouble distinguishing my sister from me in photos, despite some obvious differences in our appearance. Also, whenever he sees an older man wearing glasses and a plaid shirt, he’ll often ask us, “Is that Grandpa?” He tends to make generalizations about others’ appearance and not see the small details. This past summer when we were out in public, Alex would watch small children, and if he saw little boys who resembled him when he was little, he would ask, “Is that Alex?” Through various explanations, we were able to convince him that he was the only one like him, and he seemed to grasp that other boys were not Alex. Also, by watching the videotapes of his childhood and noticing the dates displayed on the bottom of the screen, he was able to reconcile the idea of his maturation over time. He was the same boy, just older and bigger now.

Like many children with autism, Alex has had a great deal of trouble with the pronouns you and I or me. I’ve never been certain as to whether this difficulty is a language issue or a perception issue about who he is and his point of view. For example, if I asked him if he wanted juice, he would reply, “You want juice.” Even more confusing would be situations where he would approach us and say something like, “You made a mistake.” Then our conversation would be reminiscent of Abbott and Costello’s comedy routine “Who’s on First?” that Raymond Babbitt repeated throughout the movie Rain Man. We’d ask Alex for clarification by saying, “Who? Alex or Mommy or Daddy?” The majority of the time “you” meant Alex, but we had to be sure. This led him to another stage we called the “Bob Dole Syndrome” after the U.S. senator who frequently referred to himself in third person as “Bob Dole” when he was running for President. To make certain he was understood, for instance, Alex would tell us, “Alex wants cookies.” While this method was more efficient for making himself clear, his speech sounded rather stilted by using his name instead of “I” or “me.” Interestingly, he could easily use “I” in situations where he felt strong emotions, such as, “I hate popcorn!” or “I like shrimp!” Perhaps when he expresses his feelings, Alex comes closest to knowing who he is, and his language reflects this clarity. As he does with most things in life, Alex needs time to observe, listen, and study so that he can understand the world and his place in it. By figuring out who he is through his reflected images and his language, Alex gains confidence in himself, allowing him to interact more easily with others and to overcome the social skill issues autism presents.

“Praise the Lord, I tell myself, and never forget the good things He does for me.” Psalm 103:2

Supplements

Recently, Alex’s doctor suggested that we add Omega 3 fish oil to his nutritional supplements as a possible way to help his tendency toward dry skin and dandruff. After about a week of adding fish oil, we noticed subtle changes in his behavior, primarily a sense of discontent and some anxiety. Thinking that the timing between the new supplement and his mood changes was not likely coincidental, we took him off the fish oil, and his easy-going good nature returned almost immediately. Through the years we have learned that Alex’s metabolism requires a delicate balance of nutrients that impact his health and behavior tremendously. Under his doctor’s supervision, Alex has tried a variety of supplements, but we always introduce new things one at a time so that we can monitor his reaction and have a good sense of what is causing any changes—positive or negative. Some supplements that have a good reputation for helping children with autism have made Alex extremely hyperactive or agitated, so these were not a good choice for him. A couple of years ago, his doctor recommended that we make protein shakes for him, and after two days of protein shakes and an insomniac Alex, we decided to throw that supplement in the garbage. On the other hand, some supplements have been very helpful and critical to maintaining Alex’s good health.

While Alex has taken as many as four dozen supplement pills a day to address various needs he had at times in his development, he currently takes about twenty pills daily (some supplements in multiple pills), divided into doses after breakfast and before bedtime. The only daily prescription medication he takes is Fluoxetine, or generic Prozac, an SSRI medication to help his OCD. He started taking this around age eleven, and he has been on various doses over the years. Now he only takes ten milligrams per day, a very low dose, but one that seems to keep his obsessive-compulsive issues under control. For many years, he has taken a multivitamin and mineral supplement to balance his nutritional needs. We give him EveryDay Multi-Vitamin from Kirkman, a supplement that is especially developed for people with autism and is hypoallergenic for purity. Since Alex has food sensitivities to milk products, he takes a calcium-magnesium citramate supplement to make sure he has enough calcium in his system. His dairy-free diet also means that we have to give him a vegan form of probiotics to avoid ingesting any milk products. Over the years, Alex has had problems with yeast overgrowth, but the probiotic supplements, especially those with acidophilus, seem to keep his intestines in good working order. To address his environmental allergies, he takes generic over-the-counter Claritin. We had noticed that he acted particularly irritable during allergy seasons, and OTC allergy relief seemed to improve his mood. To make sure he is not bothered by allergens, we keep him on the medication year-round, and his doctor has approved this regimen, as she has with all of his supplements. To calm Alex’s anxiety, he takes GABA, a supplement we order from Kirkman that works much like valium but without side effects or the risk of addiction. Another calming over-the-counter supplement that has helped him tremendously is the addition of New Beginnings Nutritionals’ low-dose lithium drops, which help regulate his mood swings and keep him content. Before bedtime, a critical part of Alex’s routine is taking melatonin, a natural hormone that regulates sleep cycles and safely helps him sleep. Many children with autism lack the levels of melatonin in their bodies they should have, and Alex has definitely benefitted from taking melatonin so that he can sleep peacefully throughout the night without any negative side effects. Besides these daily pills, I give Alex a methyl vitamin B-12 injection prescribed by his doctor twice a week. These B-12 shots help heal Alex’s nervous system and detoxify heavy metals his body is unable to remove from his system, which has been an issue for him. Currently this combination seems to work well for Alex, and we are pleased with his behavior and his good health.

Fortunately, Alex is very cooperative about swallowing pills. When he was about five, I worked with him to help him learn how to swallow pills because I wanted to start him on supplements, and more were available in capsules or tablets than in liquid form. In addition, if Alex didn’t like how something tasted, he was likely to spit it out; hence, pills were the easier route to take with him. Having watched my mom give our family dog pills, I modified her technique slightly, putting the pill in Alex mouth, gently holding his mouth closed, and rubbing his neck to encourage swallowing. While he wasn’t pleased with this activity at first, he caught on to what I wanted him to do, and soon he could take the pills without my having to hold his mouth closed. Since then, he has always been very good about taking any medicines or supplements we have given him and seems to know that we are trying to help him. Part of my Sunday morning routine is counting out his supplement pills and placing them in pill containers marked with the days of the week. This helps Ed, who gives Alex his morning supplements on days that I’m at work, and it makes life simpler for both of us for the evening doses that we share supervising. To prepare for the week, I consult a list detailing the pills and their dosages as I go. In one of Ed’s poems from his book Tidal Air, “Late Vacation at the Cape,” he adeptly describes my task: “She separates the medicine as if she is a pharmacist, always counting out the tally, naming each as she distributes so none of them is ever forgotten.” In addition, we count the pills aloud—sometimes counting in foreign languages for variety—as we give them to Alex, who sees this regimen as a game and happily swallows each numbered pill. At the same time, I count our blessings that this daily routine and God’s grace are working toward healing Alex.

“O Lord my God, I cried out to you for help, and you restored my health.” Psalm 30:2

Progress Achieved

While cleaning house this past weekend, Ed and I remarked on another positive change we’ve noticed recently in Alex: he’s become fairly neat. Only a few months ago, he had the annoying habit of tearing up little pieces of toilet paper and strewing them throughout the house, requiring a need for frequent vacuuming. Apparently he has lost interest in doing that in the last few weeks because I only found two tiny pieces of toilet paper on the bathroom floor on Saturday. Overcoming this habit also explains why I don’t have to change the toilet paper rolls as frequently as I had been doing. As I mentioned in my blog entry “Stages,” Ed and I have commented that every annoying stage eventually disappears, only to be replaced by an equally annoying phase. The toilet paper tracked through the house had replaced the pieces of legal pad paper with Alex’s lists written upon them scattered in nearly every room. We solved that problem several months ago when we started buying composition notebooks for him to use for his sacred lists; not only does that prevent list loss but also limits list litter. Thankfully, as Alex has matured, he has outgrown various phases, some of which he couldn’t really help and others that seemed to be deliberately irksome on his part.

Because of his obsessive-compulsive tendencies, Alex has initiated routines throughout the years regarding eating. At times, he insisted upon eating three servings at every meal, so Ed and I would estimate how much he could eat and divide that amount into thirds for the required three servings. Later, he dropped the three servings plan and went to timed meal sessions instead. He would set a kitchen timer for ten minutes of eating—no more, no less. He would even leave one bite to eat during the last few seconds of that ten-minute session. Within the past few months, he seems to have a sense of how much he wants and needs to eat and simply eats that amount in whatever time it takes. He’s no longer tied to an obsessive routine about meals, which shows progress. Some of his past behaviors were also linked to his sensory issues. For example, wearing shoes and socks seemed to bother him, and he would only wear them when he was going someplace. As soon as he walked in the house, he would immediately take off his shoes and socks and go barefoot, no matter what the weather. In another recent change, he will now keep his shoes and socks on his feet long after he’s arrived home, apparently not bothered by the feel of them. Because of his sensitivity to sounds, he had previously been upset by thunderstorms and the sound of people coughing. Whenever it would storm in the night, he’d have a meltdown, yelling and pounding on his bedroom wall. Once we realized that he couldn’t hear thunder in our basement, we would take him to sleep in the basement bedroom while we slept on the pullout couch in the basement family room. Shortly after we arrived at this solution, Alex seemed to stop being upset by storms and now sleeps through them. Similarly, he is no longer bothered by people coughing, which is a relief. If Ed or I had a cough, we’d try to keep away from Alex because he’d run at us, grab our necks, and yell, “STOP COUGHING!!” Being sick is never fun, but being sick around Alex was especially stressful. Now, he never seems to be fazed by anyone coughing, which is another step of progress for him.

Besides the behaviors linked to his sensory and OCD issues, Alex also just did things to be ornery. Like many children, he would engage in various attention-seeking behaviors, such as whining, arguing, and interrupting conversations. Even though he doesn’t seem to have any sense of being self-conscious, he did seem to know how to do things that might embarrass us. We went through a stage where he thought it was hysterically funny to say stupid things when I was trying to order fast food in the drive-through lane. From the backseat, he’d yell into the speaker at McDonald’s: “I want pizza!” or his personal favorite, “I want INFINITY hamburgers!” Then he’d laugh and giggle as I’d try to give the real order. He also found it amusing to keep pressing buttons that would make loud noises, including the one to find the cordless phone or the one on our key chains that would set off our car horns. Needless to say, those were hidden from him for several months, as was a small tape recorder he would use after provoking us so that he could record our exasperated responses to play back for his own amusement. In addition, he used the television to annoy us, turning up the volume as loud as it would go, just to watch our aggravation. He would also overreact to quick changes of commercials, which he called “switchovers,” by tipping over lamps. After replacing various broken light bulbs, lampshades, and lamps, we were pleased when he got past that stage. During those particularly trying early teen years, he’d ask me every night before he went to bed if he’d done anything bad that day. I’d try to minimize his infractions and tell him I loved him so that he knew we’d forgiven him. Now, every night before he goes to bed, I thank God that I can’t think of any bad things Alex has done that day. The progress he’s achieved is such a blessing to all of us, and, as I now tell Alex every night, we’re so proud of the nice young man he’s become.

“The path of the righteous is like the first gleam of dawn shining even brighter till the full light of day.” Proverbs 4:18

Psychological Assessment

As we have watched Alex deep in thought over the years, Ed and I have often wondered what was going on in his mind. We were treated to a glimpse of his thought processes last week when we took him to a psychologist for testing. In the process of determining Alex’s eligibility for disability benefits, Social Security required that we take him to a psychologist to have his autism evaluated. This wasn’t a real surprise since Alex’s last complete evaluation was at age four when he was originally diagnosed with autism. Because we didn’t disagree with that diagnosis, we never pursued having him re-tested. A few years ago, we did take him to a psychiatrist, hoping to find help for his aggressive outbursts. However, this experience was basically a waste of two hundred dollars and an hour of time. Halfway into the appointment, after I had explained Alex and how autism affected him, the psychiatrist turned to me and said candidly, “Frankly, Mrs. Byrne, I think you know more about autism than I do.” Needless to say, we did not take him back to that doctor. In anticipation of last week’s appointment with the psychologist, I felt some trepidation, not knowing how this session would go, but Alex was excited, seeing this experience as a new adventure.

After asking Ed and me several questions about Alex’s strengths and weaknesses, the psychologist began to ask Alex questions to assess his abilities. Before the appointment, Ed and I had agreed that we would not come to Alex’s rescue by answering for him or prompting him to respond. We wanted him to represent himself accurately. However, we found it hard not to help him because, as Ed commented to me, we always want Alex to shine. Nonetheless, Alex was good natured and pleasant and answered the questions as well as he could. At times he had to twist his hair, or scratch his belly, or look around the room before he could give his response, but he was engaged in the process and was conscientious about doing the best he could. For one of the tests, the psychologist asked him to tell how two words were related. For example, he said apple and banana, to which Alex answered, “Fruits.” When asked about desk and chair, Alex knew to say, “Furniture,” and when given inch and mile, he said, “Measurements.” The next example was a bit trickier. He was asked how a poem and a statue are alike. I racked my brain, trying to think of a good answer, and found out later that Ed wasn’t certain what the definitive answer was, either. Alex thought carefully for a minute and then said, “Structures.” I thought that was a pretty good answer, and the psychologist seemed to find it interesting, too. Later, when given various real-life scenarios, such as what to do if you noticed a fire in a crowded theater or found a stamped and addressed envelope on the street, he was clueless as to how to respond. I’m not sure whether this is a language issue for him or a problem-solving weakness, but at least he didn’t become frustrated.

In another test, Alex was asked to explain the old saying, “Don’t cry over spilled milk.” Like many children with autism, Alex tends to be literal and doesn’t really understand figurative expressions. He began to laugh, though, and I suspect it was because he doesn’t drink milk due to his allergy to dairy products. Spilled milk doesn’t occur in his world. He then asked the doctor what the saying meant. The doctor explained it to Alex, turned to us, and commented, “He has a really great smile.” Next, he asked Alex to guess what time it was without looking at a clock, and Alex said that it was about 12:16. The exact time was 12:09, so his estimate was fairly accurate. To test Alex’s memory, he told him three objects to remember over time: a clock, an iron, and a table. Ed and I knew that he would remember the clock because he loves clocks. Several minutes later when asked what the three objects were, he remembered the clock and table but thought the third one was a desk, which had been mentioned in the association test. Since Alex doesn’t use an iron, and I rarely use one around him, I doubt it had significance for him. Later Ed told me that he couldn’t remember any of the objects, so Alex did better than he did. Another test of his memory involved repeating back strings of random numbers. Ed and I knew that he would do well at this activity because he has memorized hundreds of digits of pi, and we weren’t surprised that he completed this task easily. The doctor, however, seemed impressed that Alex not only could repeat the numbers in the correct order, but he could also recite them in reverse order. After we had also mentioned that Alex’s strengths lie in math, computers, and keyboarding, the psychologist suggested that with those skills, along with his memory and attention to detail, someday he might make a good computer systems analyst. We were pleased that he could see potential in Alex and not just the weaknesses. Moreover, we found this glimpse into Alex’s mind enlightening and uplifting because he did even better than we had expected. By stepping back and allowing him to be himself, Ed and I enjoyed watching Alex shine—all by himself, demonstrating the gifts God has given him.

“A man’s mind plans his way, but the Lord directs his steps and makes them sure.” Proverbs 16:9