Analogy

The other day, Ed came up with the perfect analogy for our life with Alex and autism. He commented that he’d finally figured out that the ups and downs in Alex’s progress reminded him of the board game Chutes and Ladders. Explaining further, he said that last summer, Alex was making good progress in his development, figuratively climbing the ladders of the game, but recently he seems to have slid down one of the chutes, going backward instead of forward. As I’ve mentioned in previous blog entries, Alex seems to be dealing with allergy issues this summer that have made him listless and irritable at times. Under medical supervision, we have adjusted his nutritional supplements and have been treating him with a quercetin supplement to relieve his allergy symptoms along with vitamin C to detoxify his system. While he has gradually improved in his mood and become more his energetic usual self, he still refuses to talk unless he is mad about something. He will interact with Ed and me through eye contact and following our verbal instructions, but he doesn’t say much. This step backward has been very frustrating for us because we can’t figure out why he’s not talking, and he certainly won’t tell us why.

After Ed mentioned the game, I went down to the basement to find Alex’s Chutes and Ladders game board, perhaps as a nostalgic quest. Because the game involved numbers and dice, this was a particular favorite of Alex’s, and moving the game token was a good fine motor exercise for him. At some point, he became bored with the simplicity of the game and moved on to more strategic games, such as Monopoly. In our basement closet that stores games, I discovered the old Chutes and Ladders board, but in opening it to the actual game, I uncovered a piece of Alex’s past I had forgotten. On the Chutes and Ladders game board, cartoon children are depicted engaged in good or bad activities, which determines their consequences and leads them to chutes or ladders. Specifically, if the child pictured does something bad, the player gets sent down a chute, moving the progress on the board back several spaces. However, if a cartoon child is shown doing something good, the player is rewarded for that behavior by being able to move ahead several spaces using a ladder that helps make progress go much faster. As I scanned the board, looking at the various pictures, I realized that the game teaches more than just numbers from 1-100; Chutes and Ladders intends to teach a moral lesson about life: if you do good things, you’ll get a reward, and if you do bad things, you’ll be punished.

Looking more closely at the board, I noticed that I had written comments beside each child’s picture. For example, a boy is shown handing a purse to a woman, and I had written, “GOOD-Returning purse to lady.” This positive behavior allows the player to climb a ladder, moving ahead from space 71 to 91, where the good child is pictured eating an ice cream sundae, and I had written, “GOOD-Gets ice cream.” I suppose that we are to infer that the woman gave the boy a monetary reward for his honesty in returning the purse that he used to buy ice cream, but I wonder how many little kids playing the game make that connection. In contrast, a boy who is pictured mistreating a cat receives the natural consequence of being scratched by that cat, and the game player must go down the chute from space 98 to 78. For these two squares, I had written, “BAD-Mean, teasing cat (pulling tail)” and “BAD-Cat scratched him.” In my simplistic written explanations, I was trying to help Alex learn the lessons each picture was trying to convey. As I thought more about these captions I’d written, I remembered that little Alex would point to each picture and ask, “Means?” This was his way in his limited speech of asking what was happening and requesting an explanation. He was trying to make sense of the world, and by writing the comments on the game board, I was trying to help him understand human interaction, albeit with a child’s simple game board. As we continue to “play” the real-life version of Chutes and Ladders, we pray that the chutes will be few as we keep searching for the ladders that move Alex ahead more quickly. In the meantime, we roll the dice and try to do good things as we strive for that elusive number 100 space with its ultimate reward, the blue ribbon—for Alex, overcoming all of autism’s obstacles.

“Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9

Anniversary

Yesterday we celebrated our 23rd wedding anniversary, reminding me of what a blessing our strong marriage is, especially in light of the stresses autism can place upon parents. Last year, in my blog entry, "Complements," I explained how Ed and I balance one another and pull together to help Alex and each other, which explains the secret of our success as a married couple. A year later, our partnership stands even stronger with time and experience, and so I share once again "Complements."


Tomorrow Ed and I will celebrate our 22nd wedding anniversary. Along with our unconditional love for each other and Alex as well as our mutual respect, a key to the success of our marriage has been how well we balance and complement each other. While Ed is calm and take-charge, I am energetic and organized; these traits serve us well. For instance, we have an understanding about the division of tasks. If I call the plumber, Ed will explain the problem to him once he arrives. If I make the doctor’s appointment, Ed will go. In raising Alex, we have needed to pull together—sometimes as a couple and other times taking turns as individuals—to make the best life for our family.

Over the years, we have learned how to work cooperatively to help Alex. While I suspect that Ed sometimes wishes that there were a mute button for me, he patiently listens and offers his opinions when I share with him the autism research I have found. He has always trusted my judgment on medical options and various therapies, and he has consistently supported which paths I wanted to take to help Alex, even those that were somewhat unconventional. That faith in me has given me confidence to pursue a variety of interventions that have made Alex better. In addition, we have learned to work together with Alex to accommodate his needs, including sharing home schooling responsibilities. Sometimes we have had to make up stories to relieve Alex’s fears, each one contributing part of the fabrication, supporting the other, to convince Alex there was no reason to worry. Other times, we had to maneuver Alex physically to prevent his having a meltdown in public, a strange dance where we both knew the rhythms to move him deftly. Ed has jokingly said that the two of us could work for the Witness Protection Program because we could get Alex in and out of places without anyone noticing he was there—sometimes we were on either side of him and holding his hands, and other times one walked in front of Alex while the other walked behind him. By collaborating, we have kept Alex safe and content.

Fortunately, because of our job schedules, one or both of us have always been home with Alex. In fact, we were both home with him for the first eight months of his life because I was on maternity leave, and Ed was on sabbatical from teaching his college classes. Early on, we shared responsibility for Alex’s care, including feedings and diaper changes, adopting a schedule that worked well for us. Since Ed is a night owl, he would stay up late and give Alex his 2 A.M. bottle, and because I’m a morning person, I would get up to feed him at 5 A.M. Several years later, when we had to do round-the-clock chelation to eliminate the toxic metals in Alex’s system, we adopted a similar schedule. Ed gave Alex the midnight pill, we both got up to do the 3 A.M. dose, and I gave him his chelation medication at 6 A.M. I sometimes refer to our schedules during the school year as tag-team parenting because Ed is home with Alex in the mornings while I’m teaching, and then I’m home with Alex in the afternoons while Ed is teaching. On the evenings that Ed isn’t teaching classes, we’re both home, and we’re fortunate to have weekends and summers to spend together as a family. Sometimes tag-team parenting has taken on new meaning when Alex was going through challenging phases. When one of us needed a break from Alex’s demands, the other stepped up and took care of him. I am baffled how single parents—and there are many of them—raise children with autism alone. Whether providing support, allowing one parent to have free time, or working together to help the child, a strong marriage is a blessing for the parents as well as the child with autism. When the following passage was read at our wedding from I Corinthians 13:7, "Love never gives up, never loses faith, is always hopeful, and endures every circumstance,” I had no idea how prophetic those words truly are. Now I am grateful for the steadfastness, faith, hope, and endurance love has given us, strengthening our marriage as we raise the precious son God has given to us.

"Two people are better off than one, for they can help each other succeed." Ecclesiastes 4:9

Windows

This summer I have read two memoirs written by mothers of children with autism, which I always find interesting as I compare notes. Both of these books discussed the concept of “windows of opportunity,” the critical stages of brain development, and the race to have their children master skills by certain ages. This windows theory from the 1970’s has haunted parents of children with developmental delays who are frantically trying to help their children reach milestones before those windows close. I’m reminded of the scene from the movie Titanic where the workers in the bowels of the sinking ship must hurry before the doors to the watertight compartments closed tightly, trapping them from ever escaping. Like the workers helping each other as they scramble through the doors that seal their fate, parents push their children toward those developmental windows, not wanting them to be left behind their peers. Of course, this windows theory drives the need for early intervention, making certain that children with developmental delays, such as autism, get the help they need as soon as they are diagnosed.

Despite our best efforts and concerns, Alex wasn’t officially diagnosed with autism until shortly after he turned four years old. At that time, the prevailing thought was that the main window of child development closed at age five, giving us only about a year to push Alex as far as he could go. As if dealing with a child with autism weren’t stressful enough, the thought of having a rather brief time limit to “fix” him only added to the worries. His special education preschool teacher (the same one who made him hold a sign that said, “IGNORE ME!”) apparently bought into this windows theory because she would repeatedly express concerns about Alex’s thumb sucking and trouble with toilet training. Basically, she seemed to believe that if he didn’t master toileting and stop sucking his thumb by his fifth birthday, he would never break his thumb sucking habit, nor would he ever toilet independently. Since I had sucked my thumb until I was nearly six years old, I knew her beliefs were wrong. Nonetheless, my own reading and research about child development indicated that many people believed the windows theory to be true, and I felt pressure to help Alex develop as many skills as possible before that dreaded window was supposed to close at age five.

As a middle school teacher, I was taught in education classes that students cannot learn much during adolescence because hormonal changes affect their brains and distract them from learning new skills. Like the windows concept, this adolescent learning plateau hypothesis may be true in theory, but I have found both ideas to be false in practice. I know that my seventh graders learn new skills in the year that they spend with me, and I have the data to prove it. Similarly, children continue learning after that alleged window closes at age five; I have observed that Alex has gained a great deal of knowledge and skills after he turned five. Despite his preschool teacher’s dire predictions, he did stop sucking his thumb and started using the toilet on his own—in his own good time, when he was ready to master these tasks. Ironically, once Alex turned five and we got past that dreaded window that nagged me, even if I didn’t totally buy into the theory, I felt a rush of fresh air come into our lives. No longer racing against an arbitrary clock, we continued working with Alex and celebrated each milestone, knowing that learning is not something to be rushed, but rather to be enjoyed as a lifelong pursuit with each person mastering skills on his or her own timetable. Thankfully, we have found this to be true with Alex, who continues to learn and develop, long after his fifth birthday has past.

“So she helped him climb out through a window, and he fled and escaped.” I Samuel 19:12

Words

A couple of weeks ago, I described in my blog post “Farewell, Double!” how Alex seems to be recovering from the effects of allergies that have been bothering him lately. Thankfully, he has overcome the fatigue that was annoying him. In fact, he has returned to his old self with a couple of notable exceptions. First, his anxiety attacks have been popping up with less warning than usual. In the past, Ed and I knew Alex was agitated because we could foresee triggers and note behaviors that signaled he was upset. Lately, he seems to go “from zero to sixty” without any obvious provocation (e.g. the cable is out, his computer isn’t working, etc.), and he hasn’t been muttering (as I explained in the entry “Flow Chart”) to signal that his volcano is ready to erupt, allowing Ed and me to run figuratively to higher ground, or at least to put away any potential projectiles. These anxiety attacks, less predictable than usual, have kept us on our toes all summer, but fortunately, they have been less aggressive than those in the past. Most of the time, we have been able to console him through talking about his concerns, which brings up the second change we’ve noticed this summer.

Although Alex has always been rather reticent to talk, this summer he has definitely been a man of few words. One of the primary manifestations of autism in Alex has been his difficulty with expressive language. While his receptive language, or ability to understand what he hears and reads, is quite good, he has always had trouble generating speech and written words, despite years of speech therapy and our constant work with him. Along with his difficulty in trying to talk, Alex is intelligent and self-conscious, which makes him realize that he doesn’t speak as clearly as he would like. Through the years, Ed and I have tried to help him with this issue, alternately speaking for him when he’s out in public so that he won’t be embarrassed, or fighting the urge to finish his sentences for him when he’s at home and has no need to feel uncomfortable that he can’t always find the words he wants to say. Over the years, through time and practice, Alex’s speech has improved so that he can express himself through brief statements, and he has developed a surprisingly strong vocabulary, probably from his extensive reading and from conversing with his two English teacher parents. This summer, though, Alex has reverted to not volunteering information verbally and pretty much confining his answers to responses of “Yes” or “No.” In fact, sometimes, he doesn’t even answer those questions and will respond with gestures or facial expressions instead to indicate what he wants to convey. Needless to say, this regression of language skills has been worrisome and frustrating to Ed and me because it feels as though Alex has built a wall between himself and the rest of the world by refusing—and I do believe this is a conscious choice on his part—to talk. Moreover, as I reminded him the other day, we spent a great deal of time and money on speech therapy, which we’re not putting to good use when he won’t speak.

An added twist in Alex’s recent silence lies in his sudden bursts of eloquence during anxiety attacks. When Alex is agitated, he expresses himself quite clearly verbally, letting us know what the source of his anger/frustration/concern is. He uses precise adverbs such as, “approximately,” “actually,” and “exactly” to tell us about incidents from the past he remembers that bother him. While most of his complaints have to do with never wanting to use his typewriter, graphing calculator, or the computer game Monopoly Junior (all of which were previous obsessive activities he engaged in when he was younger), he also discusses abstract concepts, such as the passing of time and infinity. Despite his difficulties in using first and second person pronouns correctly, when Alex is in ranting mode, he never refers to himself as “you” or “Alex,” as he often does; instead he correctly uses “I” and “me” to express his feelings. While he usually speaks in words, phrases, or short sentences, during these verbal meltdowns, Alex seems to construct longer compound and complex sentences effortlessly. For example, the other day he expressed his frustration by telling us, “When I was 14 and 15 years old, it seemed like 30 years.” Ed and I questioned him a little further to see what was behind his mathematical analysis, and he explained, “Those years were boring; each one was like seven years.” I guess he was trying to deal with the idea of how time seems to drag when life isn’t interesting. Ed, who is more mathematical than I am, figured out that by adding Alex’s proposed seven years of boredom together, he came up with 14 years and then added that to age 16, which was apparently a less boring year in Alex’s eyes, which gave a total of 30. Ed ran this theory past Alex, who confirmed that was exactly what he meant by his cryptic comment. Another interesting observation I’ve noted during these word oases in the middle of Alex’s word desert is that Alex’s eye contact is significantly improved when he’s talking with us. Not only will he look at Ed and me when he’s telling us his worries, but he will also look us right in the eyes when we talk with him. These odd conversations ironically mark the most interactive and social behavior Alex has ever shown. As Alex talks with us during these times, we watch his anxiety gradually fade; by expressing his concerns and knowing that we care, Alex can address these fears head-on and regain his composure. While we miss the everyday conversations about the weather and game shows and what foods he likes to eat, I have hope that Alex will soon regain his desire to talk with us more often and suspect that his verbal outbursts indicate a progress in his development. We’ll just look forward to conversations that begin in delight instead of aggravation so that we can learn more about how Alex thinks because I suspect there’s a lot more on his mind that he has to share with us.

“For my words are wise, and my thoughts are filled with insight.” Psalm 49:3

Savoring

When I was growing up, my mom frequently bought copies of the magazines Family Circle and Woman’s Day at the grocery store. An avid magazine reader, I would pore over the articles, tips, and recipes in these colorful magazines, but I also remember enjoying a feature in Woman’s Day called “Lifesavors.” A quick Google search this week informed me that Kathryn Swarthout wrote this feature, which she describes on her website as “free-form poetry,” for more than twenty years. As I recall, her writing consisted of lists of common, yet often overlooked, pleasures in life described in vivid imagery, such as an ice cold glass of lemonade on a hot summer day or the sound of ocean waves crashing against the shoreline. Life with autism has taught me to appreciate and savor the simple joys in life that often catch me by surprise.


For me, life savors would include sounds and sights I associate with Alex, such as the following:

the rush of water as Alex flushes the toilet, a reminder of relief that he finally learned how to use the bathroom independently;

the melody of Alex’s laughter at something that he finds genuinely amusing, especially when he and Ed are sharing a joke;

watching Alex sway, uninhibited, when he hears music he loves, whether it be jazz, country, or some nondescript instrumental tune played on our cable weather channel; or

seeing the light in Alex’s dark eyes when he’s enjoying doing something, often accompanied by a smile that spreads across his face.


For Alex, some of the things he savors in life include the following activities:

going to the local arcade to play Deal or No Deal, always choosing "No Deal" to make the game last as long as possible;




finding a comfortable spot to read one of his beloved books;



spending time along the beach at the Indiana Dunes, writing in the sand;



playing basketball with Daddy at the playground;



or taking photographs of flowers in the park with Daddy.



Although autism has made our family life untypical, we have learned to savor those things that are typical, the everyday joys which take us by surprise and make us realize that often simple and spontaneous have more to offer than complex and planned. These moments of contentment bring Alex happiness, which blesses us and makes us happy, as well.

"Yes, the Lord has done amazing things for us! What joy!" Psalm 126:3

Storage

The other day I was working on one of my dreaded summer tasks—organizing our basement storage room. When we put away the Christmas decorations in that room six months ago, I remember thinking that we really needed to straighten up all the clutter that seems to accumulate in there, so easily forgotten by its location and the door that closes it away from the rest of the house. After watching a recent episode of Clean House, in which professionals help people organize their messy houses (some of which resemble those on Hoarders), I realized that I needed to attack that room with a vengeance, sorting the contents into three categories: keep, give away, or throw away. Motivated by a stormy day that prevented doing anything more fun or more productive, I headed to the basement ready to confront the job ahead. Moreover, I knew I had a deadline because our city offers clean-out days after major holidays in which they permit people to set out more garbage than fits in the designated trash containers without charging a fee.

With Fourth of July imminent, I had an opportunity to throw away things I’d been keeping far too long. We’ve lived in this house for ten years, and I still haven’t opened some of the boxes from moving that are stored down there. Of course, those boxes contain things I don’t currently need but hate to throw away, such as my college graduation gown, extra napkins from our wedding reception with the data of our wedding and our names embossed on them, and Ed’s childhood baseball trophies. Aside from those sentimental items, Christmas decorations, suitcases, and other assorted belongings, a number of things had no reason to remain and were headed for the large trash bags to be delivered curbside next week or boxes to be donated to Goodwill this weekend. Amid the various boxes of household items to be sorted, I ran across a large laundry-sized wicker basket I remembered that we used to keep on the bottom shelf of our built-in bookshelves in the living room at our previous house, where Alex and I had easy access to its contents. Pulling the basket out from behind the cardboard boxes stacked in the storage room, I discovered a variety of objects geared to help his sensory, fine motor, and language skills that I had gathered to help him work on some of these weaknesses. This basket of learning included the following items:

• three pieces of rubber therapy tubing, each about a foot long, that his occupational therapist gave us for Alex to chew on instead of his fingers or his shirt collars, which worked like a charm, saving his shirts—I threw away two and kept one as a reminder of a problem we overcame with a simple solution.

• a Cootie game with all the pieces (bodies, heads, legs, etc.) still there, a game we used to help his fine motor skills as he assembled the plastic bugs, which he never liked to do, preferring the game Trouble with its Pop-o-Matic dice and brightly colored pegs instead—I put Cootie in the Goodwill box.

• two View-Masters, one newer Fisher Price one I bought for Alex with cartoon reels and an older original one (probably one of the first ones made) that belonged to my dad with a set of National Parks reels, both intended to help his eyes work together by looking through the binocular lenses at the 3-D images—I kept the antique one and gave away the new one.

• a container of crayons, markers, colored pencils, and chalk that were to entice Alex to work on his fine motor drawing and writing skills but never seemed to hold much interest for him since he could type faster and more accurately—Many of these were broken because Alex had trouble holding them properly, and I threw them away.

• a travel-sized Etch-a-Sketch intended to help Alex learn to turn dials, but as I recall, he enjoyed the fun of erasing by shaking it more than creating by turning—I’m thinking I’ll keep this and see if he might try it again.

• a few squishy balls with various textures for his tactile issues that he seemed to enjoy handling—I threw these away in deference to his current choice of squishy small globes my Mom picks up for him at Michael’s craft store. Alex especially likes when I sing, “He’s Got the Whole World in His Hands” as he holds his compact version of the world in his own hands.

• a squishy heart with “YOUR [sic] SPECIAL” written on it—Even though I do think Alex is special, the error of using “your” instead of “you’re” bothers the English teacher in me, so this had to go to the garbage bag.

• two large denim beanbags my mom had made, another sensory toy—Filled with birdseed, the combination of age and basement dampness made the beanbags stink and earned them a trip to the trash.

• a set of flashcards about the U.S. Presidents, which were bent and missing a few, and one about animals, which were in pristine condition; obviously Alex preferred the Presidents to the animals—The practically new animals cards are going to Goodwill, the well-loved Presidents are going to the curb.

• a couple of wooden alphabet blocks, clearly well-used by the wear on the letters from being handled often—These will be reunited with their beloved other alphabet friends in the set I found when cleaning out Alex’s room earlier this summer.

• a plastic shoehorn advertising the bank where my father worked when I was a child and a wooden block in the shape of a shoe with holes drilled in it and laced with a shoelace to teach how to tie shoelaces—These were some of the best finds of my cleaning adventure and will be released from their basement confines to the upstairs living areas where they will be utilized since I’m getting tired of helping Alex put on and tie his shoes. Hopefully, he’ll be receptive to trying to learn this basic task once more, especially since he has some new/old tools of the trade.

Although I still have more to organize in the basement, the task is coming along nicely, and I enjoyed reminiscing as I sorted through Alex’s sensory toy basket. Once again, by looking back on our past, I feel a sense of optimism and hope about our future because I realize just how far Alex has come and know that he still has potential to overcome the obstacles autism has placed in his path.

“Don’t store up treasures here on earth, where moths eat them and rust destroys them, and where thieves break in and steal. Store your treasures in heaven, where moths and rust cannot destroy, and thieves do not break in and steal. Wherever your treasure is, there the desires of your heart will also be." Matthew 6:19-21

Confession

Recently, I have been following the case of Dr. Mark Geier, who treats many children with autism using various biomedical interventions. In April, his medical license was suspended for prescribing Lupron to children with autism, and this month he has been in the appeals process, trying to regain his medical license. Lupron is a man-made form of a hormone that causes production of testosterone in males and estrogen in females to temporarily shut down. Used primarily for prostate cancer and endometriosis, Lupron is also used to manage precocious, or early, puberty in children. Among the various issues of Dr. Geier’s suspension is the assertion that he misdiagnosed children with autism as having precocious puberty, which Dr. Geier believes occurs as a result of mercury elevating testosterone levels in children with autism and heavy metal toxicity. Since studies have shown that high levels of testosterone have been associated with risky and antisocial behavior—two traits also associated with autism—lowering testosterone levels in these children temporarily may explain why parents who have used Dr. Geier’s protocol have seen improvements in their children with autism.

I must admit that had Dr. Geier’s Lupron protocol been available when Alex was younger, we may have pursued this treatment with him. While I don’t think that Alex’s puberty was actually precocious, I do think that he had elevated testosterone levels in his early teens that led to impulsive and often aggressive behaviors. From urine and stool testing, we do know that he had mercury poisoning, which we addressed with chelation by oral DMSA for a few years. When Alex was in his early teens, he suddenly went from being docile and easygoing to hostile and aggressive. Although I suspect this behavior is not uncommon, I think many parents do not talk about this difficult phase in the development of a teen with autism, perhaps because the behavior is embarrassing, or more likely because the change in the child is terribly upsetting and emotionally draining. At the time we were dealing with Alex’s intense outbursts, the only people who truly knew about the extent of Alex’s aggression, which we later figured out were anxiety attacks in which he went into “fight” mode with too much adrenaline, were my parents and a couple of my most trusted friends. Because I was both embarrassed by and distraught about Alex’s physical attacks on Ed and me, I couldn’t explain what was actually happening and would simply tell people who sensed I was stressed that we were going through a rough time with Alex and not elaborate further. Like a battered wife, I became adept at hiding any injuries Alex had inflicted upon me during meltdowns with concealer makeup and clothing (even long sleeves in the summer) to hide bruises and scratches. Now that I have come to terms with that awful period of our life, I can confess that during these meltdowns that occurred almost daily, sometimes more than once a day and at times lasting for more than an hour, Alex would scream at us, accuse us of things we had not done or said, spit at us, pull our hair (even pulling out some of mine by the roots), claw us with his fingernails until he drew blood (Ed and I both still have scars on our hands from trying to defend ourselves from these attacks.), grab our arms hard enough to leave bruises, bite us, hurl objects at us, as well as slap, kick, and hit us hard. Many times it would take both of us using all of our strength to restrain him enough not to hurt himself or us. Although Alex did not usually engage in self-injurious behaviors, or SIB’s, as some children with autism do, occasionally he would be so distraught that he would try to claw his eyes, which required that Ed and I each grabbed one hand to keep him from harming himself. To prevent him from scratching his face and eyes or us, we would put oven mitts on his hands for protection. We knew that Alex was not himself because during these fits, he would often foam at the mouth and have a crazed look in his eyes. Since Alex is several inches taller than I am, he has a distinct advantage over me in height, and the seemingly superhuman strength he probably gained from adrenaline during these meltdowns made Ed and I, both fairly slender, no match against our slender but surprisingly strong and tall son when he was in this mode. Therefore, we asked his doctor for a sedative to calm him during meltdowns, and she prescribed Ativan, which helped tremendously. In addition, I took lessons in the martial art of tae kwon do for a year to learn to defend myself.

This is one of autism’s dirty little secrets: delayed language, motor, and social skills commonly associated with autism are difficult, but they are just “a drop in the bucket” when compared to dealing with the less discussed hormonal rages of the teen years. I have decided to be candid about our experiences because people need to know what is going on behind the scenes in many families with autism. We can’t come to your birthday party or plan anything in advance because our teenager with autism might suddenly and for no apparent reason fly into a rage like the Incredible Hulk, and trust me, you don’t want to be part of that. Thankfully, through various interventions, including praying fervently, adding the supplements GABA and over-the-counter low-dose lithium, learning to deal with these meltdowns more calmly so as not to “pour gasoline on the fire,” and simple physical maturation that likely leveled any hormonal imbalances, Alex’s outbursts became much less frequent and less intense. On the occasional times where he reverts to aggression, he is easier to manage, but we still must be on guard for those meltdowns. Nonetheless, we are grateful to have survived those terrible times and feel great empathy for parents who suffer silently as their children are going through this extremely trying phase. As I explained in my last entry, “Curebie,” I continue to pray that a cure for autism will be found so that no child and no parent must deal with the side effects, including extreme meltdowns, this condition causes. In the meantime, I also hope that those who know families dealing with autism would show compassion, realizing that, like an iceberg, there may be more to the situation than what shows on the surface.

“Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses.” I Timothy 6:12

Curebie

Last week I finished reading one of the books on my summer reading list, autism mom Kim Stagliano’s memoir, All I Can Handle: I’m No Mother Teresa: A Life Raising Three Daughters with Autism. As the mother of only one child with autism, I marveled at how well she juggles all the responsibilities of dealing with three children on the spectrum along with working as an autism advocate through her writing. Moreover, her positive attitude and sense of humor impressed me, especially considering some of the difficult times her family encountered along the way. At one point in the book, she describes herself as a “curebie,” and I identify with this label, as well. She explains that a curebie is “an autism parent who believes that, in our lifetime, we will be able to bring these kids to a point where they blend in with their peers and can live full, independent lives—through a combination of medical treatment, therapy, schooling, and a rosary that stretches from Connecticut to California.” Even though autism is typically characterized as a “lifelong disorder,” many parents like us pursue various therapies and interventions with the hope of curing our kids.

While one would think that wanting to cure children from a condition that impairs their ability to interact with other people, as well as often affecting their physical health, would be a positive goal, being a curebie makes one the target of some critics. This week I read a blog entry by an autism mom who asserted that she didn’t want to cure her child because she loves him just as he is. She believes that removing his autism would take away his personality and deny him of his true self. I noticed that her child is only three years old and wondered if she might feel differently about her position after dealing with autism for several years, especially during the turbulent teen years, when children on the spectrum may become aggressive as a result of hormonal changes. Perhaps she, indeed, thinks that her child’s behavior is part of his natural temperament and not the result of food sensitivities, toxic metal poisoning, yeast overgrowth, or other physical ailments. With Alex, we know that all of these conditions have affected him; therefore, we don’t believe that taking away the autism and all its accompanying symptoms would rob him of his identity; we know that when he’s feeling well, he’s an easygoing, happy, cooperative young man. That’s his true personality. Aside from autism parents who don’t want to change their children, some adults on the autism spectrum who are able to convey their feelings have asserted that wanting to cure autism is wrong. They tout neurodiversity, the acceptance of people who are not neuro-typical and eschew the term “normal” for those who are not on the autism spectrum. Certainly, parents of children with autism want acceptance for our children as they are, but we curebies want something better for our children: we want them to be the best they can be, so we keep searching for ways to make their lives easier. Like all parents, we love our children as they are, but we always want what’s best for them and are willing to move heaven and earth to help them attain that goal.

Last week, I watched an old rerun of Little House on the Prairie in which Mary thought she was overcoming blindness because she perceived images of light. After a doctor explained to her that she was not actually regaining her sight but sensing the warmth of sunlight that caused her brain to imagine that she saw light, she was devastated. She said that she wanted to see so that she could help her husband, who was also blind. Her father finally made her admit that she was also disappointed because she wanted to be able to see, as she confessed, “I wanted to see for me!” Similarly, I confess that I want Alex to be cured of autism because it would make life easier for me. Aside from the everyday responsibilities of overseeing his self care and making certain that he stays safe, I would welcome the relief of not having to worry that he can live independently if something happened to Ed and me. So, yes, I want Alex to be cured for me. However, I also unselfishly want Alex to be cured so that he can enjoy life to the fullest without physical ailments that he has dealt with through the years and without the sensory, communication, and social difficulties that make interacting with other people a struggle for him. At this point, I can’t see how that will happen and must rely on faith that God will take care of Alex. As I was reflecting on these thoughts the other night, one of my favorite country songs was playing in the background, “The Impossible” by Joe Nichols. The last few lines of this song offered me encouragement about our situation: “ 'Cause there’s no such thing as hopeless if you believe. Unsinkable ships sink; unbreakable walls break. Sometimes the things you think would never happen, happen just like that. Unbendable steel bends if the fury of the wind is unstoppable. I’ve learned to never underestimate the impossible.” Although a cure for autism seems impossible right now, as a curebie, I keep hoping and praying that one day Alex and all others affected by autism will overcome the obstacles, as the “unbreakable walls break,” and know that with God, nothing is impossible.

“The moon will be as bright as the sun, and the sun will be seven times brighter—like the light of seven days in one! So it will be when the Lord begins to heal His people and cure the wounds He gave them.” Isaiah 30:26

Farewell, Double!

Over the years, I’ve watched a variety of soap operas, especially in the summer when I was on vacation from school. In college, I followed ABC’s lineup of All My Children, One Life to Live (both of which are about to be cancelled), and General Hospital. Recently, I’ve resumed watching an old favorite, Days of Our Lives, to see how the main families, the Hortons and the Bradys, are doing. One of the current main plotlines is an old standby—the evil twin scenario. In this case, good guy Rafe has been kidnapped by evil Stefano and replaced with a double who had plastic surgery to make him look exactly like Rafe. For weeks, no one—not even his wife—seemed to realize that fake Rafe wasn’t the real thing, despite the crazed look in his eyes and inappropriate comments he made that the true Rafe would never say. Fortunately, the real Rafe was able to escape his captors to come home and explain what had happened to him. Of course, Rafe’s family and friends were delighted to have the real deal return and say farewell to the imposter who had not only duped them but had also caused various problems during his stay.

The past several weeks with Alex have felt somewhat like life in the soap opera evil twin scenario as his demeanor changed from its usual happy and energetic to irritable and lethargic. Like faux Rafe, the Alex who has been living with us recently looks like our son, but his behavior, facial expressions, and comments are a little off, making us suspect that something isn’t quite right. Instead of dashing around the house enthusiastically, this new and unimproved Alex lay on the couch sullenly most of the day, refusing to talk and often keeping his eyes closed or covered with his hand. Moreover, our Alex loves to eat and go places; this Alex refused to eat at times and couldn’t seem to muster the energy to get up and go anywhere. As I explained last month in a blog entry, “Modifications,” we took Alex to a chiropractic internist who ran several tests on Alex that came back normal (as I explained in another blog entry, “Results”), but he suspected that Alex was in allergic shutdown mode and recommended some supplement changes to alleviate the symptoms. Through the years and under the guidance a wonderful family physician, I learned to start only one new intervention with Alex at a time so that we could know what was helping, or in some cases, even making him worse. After considering the various suggestions the chiropractor made, I decided the most important new supplement to try was one for allergies that contains an anti-inflammatory bioflavonoid, quercetin. While Alex’s improvements have been gradual, we do think the new supplement is helping him because we have seen less of faux Alex and more of real Alex lately.

Through careful observations, here is a comparison/contrast between Alex and his “evil twin.”
REAL ALEX eats all of his food happily; EVIL TWIN barely eats if at all and sometimes acts as though the food he’s been given is garbage.
REAL ALEX bounces through the house with high energy; EVIL TWIN lies on the couch all day, too tired to do anything except watch television.
REAL ALEX smiles and laughs most of the day; EVIL TWIN grimaces and mutters under his breath, mainly about not wanting to use his typewriter or play Monopoly Junior, neither of which he’s done in years.
REAL ALEX enjoys grooming routines such as brushing his teeth, combing his hair, and shaving; EVIL TWIN wants nothing to do with any of these tasks and must be cajoled to participate in basic hygiene.
REAL ALEX loves going places and jumps up eagerly to get going; EVIL TWIN doesn’t want to do anything that involves leaving the comfort of his bed or the couch.
Thankfully, just as Rafe on Days of Our Lives was able to escape from his captivity, Alex seems to be emerging from the walls allergies likely put around him. Last weekend we were able to take him downtown to the farmers’ market, a Corvette show, and the Soap Box Derby, and he handled all of these situations well. With time, we pray that he will continue to improve and overcome whatever has been making him moody and listless so that we can forever say farewell to the double who has been taking his place lately; we much prefer his good twin who makes us happy through his contentment.

“Why did you slip away secretly? Why did you deceive me? And why didn’t you say you wanted to leave? I would have given you a farewell feast, with singing and music, accompanied by tambourines and harps.” Genesis 31:27

Father's Day

As we celebrate Father's Day today, I am thankful to my dad and Ed, Alex's dad, for the love and support they have given me through the years, but I am more grateful for the compassion they have shown Alex. Even though they haven't been able to do traditional grandfather-grandson or father-son activities because of how autism impacts Alex, the two most important men in my life and Alex's have embraced him as he is and found common ground to share with him. For instance, my dad and Alex both find numbers, statistics, and meteorology interesting; in fact, when I'm buying gifts such as books with those themes for one of them, I usually pick up another for the other one. Probably only Alex and Grandpa find interesting the number of miles on the odometer that Grandpa's cars have had through the years; Alex can recall and recite not only how many miles Grandpa's first Studebaker had on it, but also what year model it was and how many years he kept it. Maybe the apple doesn't fall far from the tree, after all.

For some reason, whenever my dad says hello to Alex, he always drops his voice about an octave to greet him with a deep voice. This change of tone has not gone unnoticed by Alex because in return he drops his own pitch, trying to match Grandpa's, and says in a deep voice, "Hello, Grandpa!" This imitation was especially funny when Alex was a little boy. In addition, he has generalized this greeting such that whenever he talks about Grandpa, Alex says "Grandpa" in that same deep voice. Usually, he grins when he talks about Grandpa, too, because he finds him amusing, and I think he senses the special bond they have.

Through the years, Alex has closely identified with both of his primary male role models in my dad and Ed. In spite of his language and social skill delays, he clearly admires both of them and wants to be like them. As Alex has gotten older, one of his favorite things to do with Ed is to tease me, which he finds very entertaining. The other day, we were talking about the county fair, and Ed, who enjoys taking advantage of my trusting gullibility and good nature, told me that there was going to be a new event this year, "Pet the Poultry." I must confess, I have a deep-seated fear/dislike for all birds (unless they are roasted or fried), like my dad who as a farm boy had to ride to market in the car with live chickens in a bag flapping around him; therefore, Ed knew this comment would incite a reaction from me. Apparently, my wide-eyed expression and innocently questioning, "Really?" was the prize for this made-up event, and he and Alex both found putting one over on me really funny. Even though the two of them gang up on me and find humor at my expense, I don't mind because I find their camaraderie endearing, maybe because it seems to be a typical father-son activity in our life that autism often makes untypical. As I described last year in my blog post, "Daddy," which appears below, Ed has become a wonderful father to Alex, in spite of, or perhaps because of, how autism has affected all of us.


Daddy
Looking through Father’s Day cards, I noticed several include a sentiment something to the effect, “Though I don’t say it often enough, I appreciate/admire/love you, Dad.” While this kind of card indicates a lack of communication in the relationship, perhaps this comment best illustrates what Alex feels toward his dad. I know without a doubt that Alex adores Ed, but because of his language and social issues, he cannot easily express either verbally or through affectionate gestures how much he does appreciate, admire, and love his dad. Alex doesn’t initiate hugs or kisses, but will give them if asked, and he only says “I love you” if we say it to him first. Nonetheless, he shows his love in other ways, and for us, that is enough.

In the rare times that Alex has been sick or has had nosebleeds, he has relied upon the calm reassurance of his dad, who gently reminds him that everything will be all right, all the while, holding his head over the commode or a bucket to vomit or holding an ice pack on his nose. (I, on the other hand, clean up any mess left behind and get him fresh clothes or sheets, knowing that he prefers Daddy’s easygoing nature to Mommy’s high energy at those times.) In the middle of the night, when Alex has awakened, Ed has often stayed beside him until he fell asleep, Ed’s very presence soothing him. When I give Alex his twice weekly vitamin B-12 injections, he likes to lean his head on Ed’s shoulder for comfort and never lets out a whimper. He trusts that Daddy will always take care of him.

While many fathers can enjoy watching their sons play sports, Alex’s motor delays denied Ed this pleasure. I’ve wondered whether hearing about his nephews’ successes in playing various sports has ever bothered Ed, but he has never indicated as much. Instead, the two of them have shared interests in politics, the stock market, math, and weather; Alex starts discussing these topics with Ed by asking, “How about nice conversation?” Lately, Alex has shown more interest in sports, watching NASCAR, baseball, and basketball with Ed on t.v., and Ed has patiently tried to teach Alex the basics of baseball and basketball when they go to the park together. Even though Ed has to remind Alex repeatedly to watch the ball, he never gives up on him. Through the years, Ed has learned greater patience and compassion through much testing in many ways. On this Father’s Day, I’m very proud of both of my guys for the men they have become by loving each other.

“Fathers, do not exasperate your children; instead bring them up in the training and instruction of the Lord.” Ephesians 6:4

Baccalaureate Address

As I described in an earlier blog post, “Home Schooling,” Ed and I decided to teach Alex ourselves when we were dissatisfied with special education preschool and felt that one-on-one instruction would be better for him. In the fourteen years since we made that decision, we’ve never had any regrets. In fact, whenever I hear from other local autism moms about their frustrations with the school district as well as their upset about how peers, who should know better, and adults, who definitely should know better, treat their children badly, I breathe a sigh of relief that we’ve been spared that pain. Autism is hard enough without other people making it more difficult. Because we started home schooling Alex from preschool age, he missed out on all the typical aspects of traditional education—the good and the bad: recess, lockers, Valentine’s Day parties, and field trips, to name but a few. Of course, Alex doesn’t really even know what’s he’s missed, so he has no sense of loss for these rites of passage. I’ve never mourned for his loss of a typical school career, either, until last Wednesday, the evening of our high school baccalaureate ceremony.

Had autism not profoundly impacted our lives, we likely would not have felt the need to home school Alex, and he would have graduated from high school last week. While most people focus on graduation ceremonies as the ultimate celebration of high school accomplishments, for me, the baccalaureate ceremony holds more esteem and value with its dignified mood and religious message. I remember my own high school baccalaureate ceremony with fondness, feeling awe as my classmates and I walked down the long aisle of the beautiful Valparaiso University Chapel of the Resurrection, wearing our caps and gowns representing our Valparaiso High School colors with girls in white and boys in green. Although I don’t remember the baccalaureate message, I do remember feeling deeply moved. In my dreams, I picture Alex, tall, handsome, and broad shouldered, walking down that same long aisle in his Valpo green cap and gown. Because it’s my dream, I imagine Alex not being bothered by the echoing of the organ music in that cavernous chapel, nor is he “happy hopping” down the aisle, though he feels like skipping with joy. Without the damage of autism, in my mind he holds his hands down at his sides, instead of awkwardly bending them toward his chest, except when he extends his right hand to shake hands with or give “high fives” to smiling classmates who are genuinely happy to see him. When those dreams fade to reality, I am glad Alex doesn’t realize what he’s missing of the typical teenage life, and I’m left with the bittersweet realization that while life is not what I’d planned, it holds unexpected joys that arise from overcoming unforeseen obstacles.

While most graduation and baccalaureate addresses are basically interchangeable speeches filled with inspirational quotes and platitudes about the future, my address to graduating high school seniors would share truth learned from experience. Specifically, in the words of movie character Forrest Gump, “Life is like a box of chocolates: you never know what you’re going to get.” Moreover, how you react when you get that chocolate you don’t expect and don’t even like (for me, the coconut-filled one) will reveal how strong you truly are. Do you swallow it in a gulp, just trying to get rid of it as quickly as possible? Do you spit it out, not caring who sees your disgust? Do you casually remove it from your mouth, hiding it from the world and not letting anyone see that you’re not pleased? Or, do you keep on chewing, hoping to find something palatable in what you’ve been given? Other graduation and baccalaureate speeches will encourage you to change the world and make it a better place, but realistically only a rare select few will become world leaders or doctors who find cures for incurable diseases. The truth is, most of life is pretty mundane, and the future is overrated in terms of excitement factor. Many hours will be spent working at tedious aspects of a job, fixing meals, and changing dirty diapers, if indeed you are fortunate enough to have a job, plenty of food to eat, and a child to care for. God never promised an easy life, but His constant presence gives us comfort and reassures us that no matter what we face, we never face it alone. Moreover, we need constantly to be looking for blessings in unexpected places, whether they be choice parking spots, the support of good people placed in our lives, or the welcome relief that comes after struggling with problems. These seemingly simple things change our world, or at least our outlook on the world, and the hope of attaining blessings makes our future bright. As I work my way through a Whitman Sampler that somehow lost its diagram indicating which chocolate is which, I keep looking for my favorite, the vanilla cream, but savoring the other sweets until I find it. I suspect that elusive vanilla cream is a cure for autism, so I pray that those gifted ones who are ready to change the world and make the future brighter will get working on that right away. This autism mom and many more like me would be eternally grateful for your efforts.

“This is a day to remember. Each year, from generation to generation, you must celebrate it as a special festival to the Lord. This is a law for all time.” Exodus 12:14

Blog Anniversary

Tomorrow will mark the one year anniversary of the first appearance online of my blog, One Autism Mom's Notes. I must have been having fun the past 364 days because time seems to have flown since then. As I look back over the various 115 posts I've written this past year, I'm surprised that I had that much to say. I'm even more surprised, however, and definitely pleased that people seem to like what I've written, and I always appreciate their kind comments on the blog, on my Facebook wall, in e-mails, and in person. The encouragement of those reading the blog, whether they be family, friends, colleagues, fellow autism moms, or people around the world I've never met who have stumbled across my writing when Googling autism, have motivated me to keep sharing our story in hopes of helping families dealing with autism as well as those who want to know more about what life with autism entails.

Last year at this time, Alex wanted to remember his childhood. Now, he's trying to forget the obsessions of his youth, telling us he no longer wants to play Bosconian or Monopoly Junior, games he used to play for hours on end but abandoned a few years ago because he thought they took too much time. He'll also tell us that he doesn't want to use his graphing calculator or typewriter, both of which used to be prized possessions of his before he got a laptop computer last summer, which replaced both items in appeal and usefulness. Even pi digits, which he researched intensely and memorized successfully a few years ago, have fallen out of favor for Alex. This past year, he seems to be gaining a greater awareness of himself and the world around him, focusing less on numbers and patterns that used to give him comfort by giving his world order and predictability. While this move away from obsessions marks progress, at times he seems overwhelmed by stimuli around him, and he needs time to process everything, becoming quiet and introspective. Nonetheless, Ed and I continue to try and get a glimpse of his mind, asking him questions, engaging him in conversation as he'll allow us, and regularly checking his Internet search history to see what he's currently investigating. As Alex makes sense of the world, and as we figure out what he's thinking, I know there will be more stories to tell, and I look forward to sharing them and recording them for him to reflect upon someday. In that spirit of reflection, I share my first blog post from last year, "Remembering" once again.


For years, my family and friends have been telling me that I should write a book. I knew what I would write, yet I resisted their encouragement because raising my son, who was diagnosed with autism in 1996, has consumed so much of my time and thoughts that I wasn't willing to take on another project. Of course, the book I would write would be about raising a child with autism and all we have learned on this journey, in hopes that it might help other parents. My son Alex is now eighteen years old, and I'm still not ready to write that book yet. I keep waiting to discover how things will turn out for my main character.

Lately, Alex has been obsessed with the idea of what his earliest memories are. He has watched videotapes of his childhood, has poured over the hundreds of photos we took of him as a child, and has asked us repeatedly on a daily basis about how far back he can remember. All the while, he carries around a picture of himself at age four. He tells us that he remembers in April 1996, when he was four years old, he got a clock at Kmart. For most children, this would be insignificant, but for Alex, who uses numbers and measuring devices to make sense of the world in terms of time, dates, temperatures, stock market statistics, and even the hundreds of irrational pi digits he has memorized, this seems a fitting first memory.

During this recent search for Alex's younger self, he has enjoyed hearing stories about when he was very young because they help him reconstruct a time he cannot remember. Now I realize how important it is to write his history, if for no one but Alex, so that he can see how far he has come. For those who wanted me to write a book, this blog is as close as I can get to that right now. I'm busy remembering for Alex, so that he can piece together his life experiences so far.

"So teach us to number our days, that we may gain a heart of wisdom." Psalm 90:12

Animals

While most children love animals, Alex has never had a particular interest in them. We bought him various animal books with pictures in them when he was younger, but he preferred dictionaries, almanacs, and medical books instead. Even when I tried teaching him about different animals, he acted bored, which is probably why he still confuses some animals, such as dog and cat, today. The most he learned about animals came from an interactive electronic learning toy, but what he mainly focused upon was whether they were herbivores, carnivores, or omnivores; that is, what they ate. Leave it to Alex to be concerned with animals’ food. If asked what his favorite animal was, he was likely to say, “Zebu,” an Asian ox, only because it began with the letter z, and no anagrams could be made of its letters. Other than that, he didn’t really care about zebus. My mom once suggested that Alex didn’t particularly like animals because they couldn’t do anything for him, which is probably true. If they couldn’t fix him a meal, help him find lost things, or drive him places, they held no appeal for him.

Because Alex hasn't been big on animals, we’ve never taken him to a zoo. The next closest experience he’s had has been going to our annual county fair. If asked what animals he likes there, he’ll tell us, “The hosses” [a.k.a. horses—for some reason he talks like Toby Keith sings in “Beer for My Horses,” which he also pronounces as “hosses”]. Maybe as Alex watches the 4-H members ride their horses in the show ring, he realizes that they could do something for him, which gives them value in his mind. Another animal exhibit he likes at the fair is the tent with farm animals that has quizzes and statistics about the animals, such as how much they weigh, how old the baby animals are, and how many stomachs a cow has. Of course, with Alex’s mathematical mind, all these numerical facts are right up his alley. He doesn’t really care about the animals themselves; he just wants to know their weight, age, and number of stomachs so that he can categorize them in his mind. Before salmonella outbreaks prohibited them, the petting zoo exhibit held Alex’s interest at the fair, too. He wasn’t really interested in getting up close and personal with the goats, sheep, or llamas, as most children do. No, his favorite animal was a giant tortoise that, according to the sign above his head, was over 150 years old. The tortoise was too slow and too old to be entertaining to watch, but Alex stood there amazed by the most elderly member of the traveling petting show. Since none of the other kids liked the boring tortoise, Alex could stand and watch it as long as he wanted.

Taking care of Alex has kept us busy enough that we’ve never had the desire to have pets. Plus, Alex wouldn’t pay any attention to them anyway. When we’ve asked him if he’d like to have a pet, he always says no, except he occasionally gets notions that he’d like to have a dog named Zeke (after seeing one on the “Stupid Pet Tricks” segment of The Late Show with David Letterman) or a cat, which is not happening since I’m allergic to cats. He finds our neighbor’s small dog amusing when it barks at him whenever he’s in the backyard, grinning but not really paying much attention to it. Whenever I have romantic notions of a boy and his dog, Ed realistically reminds me that Alex never watches where he steps, so the likelihood of stepping on a dog, or more likely, dog doo is a good possibility. Not thrilled with the prospect of cleaning dog doo out of Alex’s athletic shoe bottoms, I appreciate that Ed always makes me see the light on the having a pet issue. Once when Alex was a preschooler, my friend Charlie brought over his Sheltie dog, Elwood, who was very smart and had a nice disposition. At first, Alex just watched Elwood cautiously. A few minutes later, he ran upstairs to his room. Then he brought down an old stuffed animal, willing to share it with Elwood. As a little more time passed, Alex seemed to become more trusting of Elwood, and he ran back to his room again. This time, he brought back his favorite stuffed animal, Barney the dinosaur, and proudly laid it at Elwood’s feet so that he could play with Barney. I’ve always remembered that incident because it revealed how Alex cautiously interacts with others until he’s certain they’re okay in his book. Once he deems them trustworthy, he’s willing to share his most beloved possessions—even with an animal he’s just met.

“Where is the one who makes us smarter than the animals and wiser than the birds of the sky?” Job 35:11

Article

A few months ago in an entry entitled "Family Portrait," I described that Ed and I were interviewed for an article that was to appear in the spring edition of Valparaiso University’s Valpo magazine. The editor of the magazine had read Ed’s Autism: A Poem blog, a collection of poems about autism inspired by our experiences with Alex, as well as my One Autism Mom’s Notes blog, and he wanted to focus on our life with autism and how we write about Alex from different perspectives. In addition to interviewing Ed and me separately, he arranged for a professional photographer to take a picture of the three of us—our first family portrait in more than fifteen years. Despite my initial misgivings about how Alex would react to the photo session, he thoroughly enjoyed himself, thanks to the photographer, whose warmth and friendliness put all of us at ease, especially Alex, whom he actively engaged in the process through teaching him some basics about photography.

Similarly, the editor who interviewed Ed and me also put us at ease by the way he questioned us in a sympathetic yet enthusiastic manner. After spending an hour asking Ed questions in person, he talked with me over the phone for about a half hour, asking me some of the same things he had asked Ed, to see if I felt the same way on certain issues. Once he had organized the information he’d gathered from us and had written the article, he was kind enough to send us a draft so that we could read it and suggest any changes prior to publication. Both Ed and I were very pleased with what he had written and felt that he had clearly captured our experiences in a beautifully written article. Interestingly, he also conveyed in his writing the contrasts in our personalities: Ed, the New Yorker, ever realistic and tell-it-like-it-is, and me, the Midwestern Pollyanna, always optimistic and looking for the silver lining in the clouds. Moreover, even though he couldn’t interview Alex because of his difficulties in expressing himself verbally, he depicted Alex accurately through the details Ed and I had provided in our comments.

While some parents of children with autism protect their privacy fiercely, never revealing their last names, using pen names, calling their children by generic nicknames, and hiding their images in photographs or by never showing pictures of the children, we decided to be open with our identities and our experiences. Perhaps if Alex were younger, we might have felt a need to be more guarded with information, but now that he is nineteen, we feel less inclined to hide his identity. Certainly, I understand those who wish to protect the privacy of their families, especially their children, but we have not felt the need to hide Alex and our stories from the world. In fact, we hope that by telling our story, other families who have children with autism might feel less alone knowing that others are going through similar experiences. In addition, we hope that those whose lives have not been directly touched by autism might gain some understanding so that when they come in contact with a child who has autism, they might find compassion for the child and his/her parents. With that in mind, I’m pleased to share the link from the recently issued Valpo magazine article that gives a glimpse into our lives, especially as the title states, “Through Alex’s Eyes.”

“Look straight ahead, and fix your eyes on what lies before you.” Proverbs 4:25

Flow Chart

One of Alex’s favorite books is the American Medical Association Family Medical Guide. With its colorful diagrams, clearly written explanations of a myriad of diseases, and graphic photographs depicting various conditions, the book can hold his attention for hours. Judging by the worn cover and pages, he has perused most of the book’s nearly 800 pages repeatedly. Perhaps the most interesting section of the book, the Self-Diagnosis Symptoms Charts, guides the reader through various symptoms on flow charts to possible diagnoses. To emphasize those symptoms which could mean potentially dire circumstances, the editors have used bold face type and capital letters to emphasize the urgency of the situation, letting the readers know that they need to call 9-1-1 or go to the nearest emergency room. Since children with autism often do not follow the typical patterns of development and behavior outlined in parenting guides, flow charts like those in the Family Medical Guide could be helpful to parents and caregivers of children on the spectrum. For example, a chart on muttering, which can be a precursor to the dreaded meltdowns, might appear as follows.

MUTTERING

Are you in a public place?
YES-Attempt to leave NOW!
NO-Good!

Are the cable and/or Internet working?
YES-Good!
NO-CALL SERVICE PROVIDER NOW!

Are there any objects within reach that could become projectiles?
YES-MOVE THEM NOW!
NO-Good!

Is the muttering child wearing shoes?
YES-REMOVE them quickly; being kicked by child with shoes hurts more!
NO-Good!

Has muttering escalated to yelling?
YES-WAIT until yelling stops before trying to reason. DO NOT YELL BACK!
NO-Good!

Are the muttering child’s hands shaking?
YES-Shaking indicates excess adrenaline.Have sedative ready for MELTDOWN.
NO-Good!

Of course, most parents who have children with autism already have typical symptoms committed to memory as well as how to deal with the behaviors and, therefore, would not actually need a step-by-step flow chart. For those who’ve never experienced an autism meltdown, whether they be parents of typical children or the general public inclined to look down upon parents dealing with these issues, charts like this might help them be more sympathetic and realize that the parents and their children with autism are doing the best they can under difficult circumstances. We can’t expect others to be understanding if they honestly don’t understand, so maybe we need to be more candid in our explanations. So now you know; when my kid is muttering, I remove his shoes and all objects that can be hurled, pray that the cable and internet are working, hope that we are home, fight any urges to yell back at him or attempt to reason with him, and always keep Ativan close at hand for the really bad times. Having read a lot of medical books for fun like Alex does, I never ran across any autism meltdown guidelines from Dr. Spock, Dr. Lendon Smith, or “Dr. Mom,” but “Dr. Pam” figured it out through experience and wants to share the wisdom gained over time. Of course, now that we have this down to a science, Alex will probably come up with a new behavior to control; I’ll anticipate that new challenge and hope we can make a plan for that, as well.

“We can make our plans, but the Lord determines our steps.” Proverbs 16:9