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