Women Who Have Walked My Son into the World

May 12, 2010

So I have to give credit where credit is due. I don’t have this healthy, brilliant outlook on autism and life in general based on the heaven-sent inspiration that pours through the windows of our suburban split-level every morning. Rather, it is the result of the support, insight, and experience of trained professionals. C. J.’s many therapists and teachers have all made what might have been a seemingly destructive diagnosis not as intimidating as it first appeared.

Looking back about one and a half years, I recall initially feeling shell shocked when EI evaluators suggested that we pump our son up on a combination of speech, occupational, and developmental therapies. I couldn’t imagine—or admit—that he needed that much assistance. As a result, accepting the wisdom of the exceptional therapists who came to our house starting in November 2008 was at first a hard pill for me to swallow.

I couldn’t believe that they knew C. J. as well as I did. Nor was it easy to watch him resist their efforts, sometimes kicking and screaming when they asked him to do something as simple as putting blocks in a container. What was even more difficult, however, was grappling with the realization that these intelligent and compassionate women sensed that C. J. required more aid than I was then willing to acknowledge he needed. Over time, however, their skill and experience helped me see the proverbial light that shines on those children who are diagnosed as being on the spectrum. They never gave up on my son, and so I learned that I shouldn’t either. With their guidance, I began to understand that C. J. had not been handed a death sentence.

They started opening doors for him that now continue to swing wider with each passing day. When he started working with EI therapists, he couldn’t even put pennies in a bank without pitching a fit that would have frightened most Catholic priests trained in the rite of exorcism. A little less than a year later, he was laughing and smiling as he matched shapes and named colors.

These ladies saw me at my absolute worst—waddling around my house in an advanced state of pregnancy, constantly looking browbeaten and occasionally spurting tears or snapping at my daughter to keep quiet during therapy sessions. I experienced some of the rawest emotions I have ever been forced to cope with in the ten months they visited my home. Their patience with everyone in our family and their sincere desire to help us comprehend and come to terms with his autism diagnosis were among the main factors that prevented us from falling apart.

Thankfully, the same can be said for the staff at the special-education preschool that C. J. currently attends. As September 2009 approached, I dreaded an end to in-home therapy and the onset of my baby boy being shipped off to school. Prior to his first day at Madison Early Childhood Center, I was wracked with a sense of losing control. I would no longer be there to hold C. J.’s hand or dry his tears. And, unlike when my daughter started preschool, I shuddered at the notion of my three-year-old throwing uncontrollable tantrums in public and being surrounded by people who might not be able to immediately second-guess his needs and wants.

Within a few weeks, however, I gradually began to accept that the goal was not to have others adjust to C. J., but to help him adapt to the world around him. One day, my husband and I will no longer be here. I have very few ways of guaranteeing that, when that moment arrives, my son will be sheltered in a comfortable little box where only men and women who can read his mind will feed, clothe, and support him. Nor is that what I truly want for my middle child.

It is my ambition that, regardless of whether he every fully overcomes his speech impairments or sensory issues, C. J. will learn how to effectively communicate and cope. And that is precisely what the teachers, therapists, and aides at Madison are showing him how to do. More to the point, he loves being in a classroom with other children, riding the bus five days a week, and demonstrating the many ways he is growing and changing for the better.

I recently gave a bit of added thought to a line I heard on the NBC show Parenthood, which features a couple trying to deal with their middle-schooler’s autism diagnosis. A developmental expert on the program instructs the mom and dad in question to work toward “walking their son into the world.” For families tackling news of an autism spectrum disorder, it is far too easy to hide their child or back peddle him into a false safety net of denial, ignorance, fear, and defeat. From my humble perspective and personal experience, it is C. J.’s therapists and teachers who have most tightly held his hand as he ventures into the world of wonderful possibilities that inevitably await him.

In Good Times and In Bad

May 5, 2010

Even after I gave birth to my first child, my husband and I continued to discuss a variety of topics besides her at the dinner table each night. Granted, Maria still monopolized a good portion of our conversation, as most children do for any proud parents. But we still chatted about the Middle East, local weather, and the Academy Awards.

After having a child with autism, however, things changed. On good days, commentary typically revolves around C. J.’s latest accomplishments at school or a positive report from his teachers, therapists, or doctors. Dialogue between us at the dinner table is usually exchanged in a rapid-fired, “spit out as much as you can while you can” manner.

Apart from the fact that we are helping a one-year-old learn how to use table utensils, we also have a three-year-old who can’t stay put in front of his plate for more than three-minute stretches. One of us needs to forever be making sure that C. J. isn’t streaking through the living room with Ragu on his hands or picking noodles out of his older sister’s bowl. Now add to that the challenge of a five-year-old who is trying to throw in her two cents about what’s happened in her world during the course of the day but who is regularly instructed to “hold that thought” or to “hang on a second.” What you get at the tail end of this equation is a screaming baby who has stabbed himself with a fork, furniture with spaghetti handprints, and an impatient little girl who feels largely ignored.

Just as significantly, though, the combination of said factors results in a husband and wife who could very easily drift apart amidst chaos, constant parental concern, and fatigue that no amount of coffee can combat. By the time all three children are in bed every night, each of us struggles to stay awake, let alone play catch-up with bills, work, and one another. Yes, we do periodically hire a sitter and go on dates. But chit-chat inevitably returns to a certain little boy . . . or his siblings and how he impacts and relates to them.

            So, what do we do to make our relationship work in light of the challenges that routinely spring up around us? For starters, we admit that we don’t have all the answers and that the age-old adage of taking things a day at a time indeed has some merit. And, in keeping with that philosophy, we try not to have weighty, all-consuming bedside chats about where C. J. will be in twenty years or even two. We make a point of not going to bed angry at one another, regardless of whether we resume hostilities the following morning in between gulps of coffee.

Perhaps most importantly, my husband and I laugh at those parenting moments that one can either face with a crying jag or a chuckle. I can’t lie and say that we giggle about everything related to C. J.’s struggles. But we do try to find as many opportunities as possible to adore who he is, rather than resent his autism and our sometimes imperfect way of handling it.

Oh, and we also spend at least one weekend a year away from all three of our children. We purposely head somewhere that can only be reached via plane because anything within driving distance presents too much of a temptation to cut our alone time short and head home early. Nevertheless, it’s not all candles and roses.

Like most parents of special-needs kids, we tend to be a tad on the tired side and so spend at least part of our mini-getaway snoring. But we talk to each other, too. We sit an extra fifteen minutes luxuriating in a restaurant booth after dinner because there are no possibilities of a potential meltdown. We laugh at memories of our many good moments as a family, and we cry at the more difficult situations that we’ve either tackled or are still struggling with.

Best of all, we take a second to remember who we are as a couple. We reaffirm that we are more than parents of a special-needs child. We are two people who fell in love and who are willing to use that love to raise C. J. and his siblings to be strong, independent, and compassionate human beings.

Uncovering Humor in Unlikely Places

April 7, 2010

There was a time when I turned red as a beet when C. J. would drop to the floor at birthday parties and began rubbing himself all over carpet. How do you explain to acquaintances and people you have just met that your son is in sensory overload and is pleasuring himself on the Berber because he doesn’t know how to vent his feelings in a more appropriate fashion? Pulling him up to his feet certainly wasn’t the answer—C. J. would just start screaming and fight to return to a prone position. And this will probably come as no shock to many parents of autistic three-year-olds, but having a quiet heart-to-heart with him about the social taboos of public masturbation didn’t seem to do the trick either.

Fortunately, C. J. is gradually outgrowing this particular eyebrow-raising habit, and his therapists have offered us several helpful suggestions on how to provide him with alternatives when he’s in the midst of a sensory meltdown. I have to say, however, that humor is what has saved me in this and other situations that used to leave me shamefaced. I reached a point where I recognized that certain circumstances and occurrences were simply beyond my control. And I came to understand that those I did hold a small measure of sway over were under my thumb because I was able to laugh at them.

So, when a fellow-partygoer blurted out, “WHAT is he doing?” halfway through C. J.’s carpet gyrations at yet another get-together, I finally responded with, “Well, what does it look like he’s doing?” It goes without saying that not everyone always sees humor in the same things that my husband and I do. It requires a special person to chuckle through bouts of echolalia, when your toddler automatically repeats everything you say. Similarly, it’s not easy to force out the giggles when you’re up at 2:00 A.M. because your darling is working through the inconveniences of a partial complex seizure or you’re up because you need to sleep deprive him for a pediatric EEG.

Fortunately, C. J. provides plenty of moments and experiences that are far easier to smile at. And it’s worth following his lead by not taking every little bump in the road too seriously. It’s admittedly ironic that C. J. can burst into tears when he can’t get his socks off but can still sport a grin while he’s evaluated by a neurologist or forced to swallow granules of epilepsy medication. But I suppose that is an example of one of those special imperfect talents that parents like me discover they should not question and can actually learn from.

Denial Ain’t Just a River . . .

April 7, 2010

Nor is grieving something that people only do at funerals. In fact, I can’t help but feel that moms and dads who don’t question their child’s diagnosis or even possibly fight it at some point would be in the minority. For me at least, denial and grief were all stepping stones on the path toward what ultimately transformed into acceptance. Looking back, those parts of the process were not necessarily examples of wasted effort—though they did consume a good amount of time and energy along the way.

After the journalist in me began raising my eyebrows at certain unorthodox aspects of C. J.’s development, I was desperate to find experts and answers that would confirm my worst fears were ludicrous. When my little guy still was not using any consistent or meaningful vocabulary by eighteen-months-old, I joked with other moms on the playground in the hopes that they would laughingly instruct me to simmer down and learn from their wisdom and vaster experience. They didn’t disappoint me and nodded approvingly when I explained that my pediatrician had authoritatively declared that boys were simply late bloomers on the verbal scene and remained that way much of their lives.

After C. J. refused to walk on grass during the spring of 2008, well-meaning friends and relatives chimed in that he was just being a cautious toddler. When he would stand motionless in the center of my mom’s backyard staring up at airplanes or listening to birds chirp, the gnawing feeling in the pit of my stomach intensified. Yet I pushed such worries into the back of my mind and told myself that he was merely being introspective or going through some oddball, little-boy pre-preschool phase.

Sure, he lined up trains and toy cars with a mania that was already consuming most of the free floor space in our two-bedroom condo. Yes, we had already left several Toddler-Time classes at the local library because C.J. couldn’t follow the most basic directions and was disruptive 75 percent of each session. Our life was becoming increasingly characterized by taxing, emotion-fueled tantrums that hit like the most random of lightning bolts.

It followed that each visit to the pediatrician during C. J.’s late toddler years was preceded with dread and anticipation—would today be the day the doctor noticed that we had missed one too many milestones? Would this be the time he recommended we call Early Intervention or arrange for a formal evaluation? Things got to the point that I insisted my husband take off work from his job as an attorney to accompany me to the most mundane of appointments. I was terrified of the inevitable—that some physician or nurse would inform me that my gravest anxieties about the “A-word” were more than the trappings of an overworked, uninformed, and easily rattled maternal brain.

Luckily for me, getting unexpectedly pregnant with my second son in the summer of 2008 was a convenient excuse to further banish such paranoia to the back of my brain. Between stressing out over the newest bumpkin and attending to the needs of my first, who was preparing to enter preschool, everyone’s kind pats on the back and bored eye rolls (“Katie, he is NOT autistic—can you please just let this go already?”) succeeded in granting me a stay of diagnostic execution. Yet, after months of Early Intervention evaluation and therapy to treat what progressed from C. J.’s speech delays to his admitted sensory issues to the overall struggles that I ultimately had to admit shaped nearly every aspect of all our lives, I was done.

One day, I worked up the courage to ask our occupational therapist if she thought he was on the spectrum. When she carefully replied that he demonstrated certain characteristics that coincided with that diagnosis, I began the process of acceptance—and grieving. For someone who doesn’t have an autistic child, this may seem like an inappropriate and even unnatural response. Realistically, my husband and I hadn’t been told that our son was going to spend the next year undergoing chemotherapy. He wasn’t dying, dead, or even physically unwell. But we had lost something all the same.

When C. J. was born and as he developed on a relatively normal path throughout infancy, we dreamed of how successful and adored he would grow up to be. As with most parents of any child, we honed in on strengths and achievements that we hoped would shape a bright future. He was strong and agile; it went without saying that he would ultimately grace some collegiate football field. Even as a baby, C. J. appeared focused on tiny visual details; we took this to mean that he possessed the sharpness and skill that had won my husband a degree in mechanical engineering and a lawyer’s license.

And, of course, our sweetheart was lovable and beloved. C. J. was and continues to be charming when it suits him. Blonde-haired, blue-eyed, and an incorrigible flirt, he prompted everyone around him—from pediatricians to other parents—to reassure our worst fears when we began to notice strange quirks and inexplicable learning deficits. They emphasized that he was far too social to have anything seriously wrong with him. But there was something undeniably awry, and that became more apparent as C. J. passed into toddlerhood and beyond.

When he was finally diagnosed with autism, we therefore grieved for the images of the future that we had so carefully sketched for our little boy. It wasn’t that we gave up on C. J. or the notion that he was someone great who will one day accomplish great things. But we were suddenly forced to abandon the idea that the path would be easy or even average.

Uncertainties crept into our hearts that painted new pictures of C. J.’s life to come. I found myself in anguish over visions of him being teased for his painfully delayed speech in grade school. Just as significantly, I dreaded the thought of what would happen to him when my husband and I were gone and he was thrust into the independence of adulthood.

And so I grieved for my loss of guarantees and promises of a happy ending. There continue to be many moments when I struggle with this sadness. Yet I also take joy in the realization that my family has started a healing process, as well. We are recuperating from the stress that it takes to live in a constant state of denial, and we are recovering from the sting of losing the person we thought we knew. At the same time, we are finding new fulfillment in rediscovering who C. J. is and what amazing possibilities lie ahead of him.

Who Ever Said It’s Bad to Be Bipolar?

April 7, 2010

I have reached a point in my life where I realize that any parent of an autistic child who claims to be at total peace with their familial situation must have a nose longer than Pinocchio’s. Or perhaps I am still a bit bipolar when it comes to this aspect of motherhood. For me, the highs and lows of raising a three-year-old with autism are extremely and inevitably taxing.

At some moments, I feel like the Yellow Brick Road winding toward normalcy doesn’t seem all that long or bumpy. C. J. will say a new word, give an extra affectionate kiss before school, or sit like a devout little church mouse when the cake is being cut at a noisy, crowded birthday party. As a parent, it is such snapshots of your child’s life that prompt you to smile and to breathe an inward sigh of relief and fulfillment.

Hell, sometimes they even cause you to wonder if the doctor was right in the first place. How could a kid with autism possibly demonstrate such empathy and social propriety? Maybe the developmental pediatrician was simply having an off day of his own. If he could only see my baby now, he would scribble something else onto the clipboard, something that would steer my entire family’s life in a brighter, better course.

But then, almost as quickly as my emotions soar, my cockeyed optimism dips down, down, and away. In some instances, the impetus might be C. J. banging his fist against his head when he gets overly excited or frustrated. Or him shoving his little brother onto the floor because he inched a tad too close to the carefully constructed highway of Matchbox cars that coat our ottoman at least three times a week. I have one of those “you know your child is autistic when . . .” moments, and the slap of reality hits my heart as hard as it did the very first time I dragged my cursor over the online checklist of early warning signs.

It goes without saying that this teeter-totter of feelings and worries is directly linked to my fears about where the Yellow Brick Road will end—or if it will end. Will my child mature beyond the multitude of sensory issues that prevent him from boarding an elevator without becoming hysterical or touching shaving cream without acting like it’s scalding acid? Maybe he’ll grow up to be the next Mozart or Einstein. After all, there are rumors they were on the spectrum, right?

On the other hand, so was Dustin Hoffman’s character in Rain Man. Realistically speaking, this remarkably wide range of symptoms and levels of success in overcoming them are probably why autism is categorized as a spectrum disorder. Naturally, however, semantics aren’t exactly the silver-bullet solution to easing my concerns. Whether my child has Aspergers, classic autism, PDD-NOS, or whatever new category researchers throw into the New England Journal of Medicine, I am living with a very special little person who has very definite special needs. And, at least from my personal perspective, the thoughts that fly through my head on a daily basis span topics that stretch between estate planning and when C. J. will sit on the potty seat without leaping up as if it’s an electric chair.

Whereas his world is shaped by undeniably definitive structures, rules, and patterns, the rest of us seem swamped by uncertainties. That having been said, I have at last grasped that I am entitled to good days and bad days, highs and lows, swings and dips. In accepting C. J.’s autism, I have similarly embraced the innate schizophrenia that any parent of a special-needs child experiences as they roll along the Yellow Brick Road. To expect perfection of myself, my husband, and my other children in this particular situation is as pointless and unproductive as it is demanding it of him.

So, if I had to impart one of the most important lessons I’ve learned to date, it’s to be gentle with yourself. Let yourself have moments when you laugh at the foibles or sob uncontrollably over them as you see fit. They are, after all, no more than fleeting moments in your life together as a family.

And moments, unlike people, pass and fade away. As a person charged with caring for an autistic child, you will be no good to him unless you admit that you are just that—a person. Doubt, fear, elation, and acceptance will whip in and out of your existence, but you yourself will still be standing when the whirlwind dissipates. You have a God-given right to struggle with these extremes and to prove that, once every possible human emotion has washed over you, you remain a parent who is strong and honest enough to play multiple roles, including mother, advocate, teacher, psychologist, and part of the glue that’s holding your family together.