April 30, 2010
I took him for a walk in the stroller today, my youngest son who thankfully still enjoys being propelled around the neighborhood. We have some of our best conversations here, he and I, and the exercise enables me to burn off at least a quarter of the chocolate I’ve invariably ingested that morning. This is multi-tasking at its best.
This afternoon however there are mild protests at my chosen activity, and just a few hundred yards from our home there are exaggerated cries for our return. This is my one shot at elevating my heartrate in a positive fashion, so I quickly devise a way to distract him, which because his autism is mild, is fairly easy to accomplish. I tell him, with all the drama that I can muster, that we have to go for a walk because we are looking for dragons. His head whips around, and his grin overtakes his face as he repeats “Dragons!”, just in case I wasn’t certain. I tell him yes, point to the cerulean sky, and advise him to start searching. He resumes his former posture, and trains his eyes to the clouds above.
For the next ten minutes we converse on all things dragon. I ask him how many he sees, and he replies “four” (it’s always four). I query him about their gender, and they, like him, are invariably boys. They consistently remain nameless, these fiery, wanton creatures. In general they eschew evil, and practice only good magic. They are sometimes comprised of an entire family, one that mirrors our own with mother, father, eldest and youngest son. Born in every hue, they are sometimes radiant in their multi-colored splendor. I have no doubt that to my son, they are beautiful.
I thrill to witness his make-believe world soar, much as I imagine his creatures do in the exquisite articulation of their elongated wings. We have begun to spin elaborate stories about their lives, their achievements. Some are hilarious in their antics, some naughty. They are often hungry. I feel I’ve come to know them well.
So today, just for something new, I ask my son if his dragons, his friends created from the well-spring of his burgeoning imagination, are scared of anything. He pauses for a moment, seems to ponder my question with great concentration. At last he regards me quite seriously, looks me straight in the eye, and says “You, mommy”.
And I think to myself, that’s right, my sweet boy. Dragons, beware.
April 28, 2010
The stars aligned for us on Saturday, and with much coveted assistance from Grandma, Jeff, myself and Zachary were able to take part in Autism Day at Sesame Place. I managed to eliminate my guilt at leaving Justin home with my mother and his therapist, admonishing myself that he would regard the rides with disinterest, and find Elmo’s Broadway attempts childish at best. I also reminded myself that the last time we had come to Sesame Place a few years prior the crowds were prodigious, which meant the wait for any activity was lengthy, which in general is not a positive aspect of any outing with an autistic child. So we left Justin home, with mild protests at our departure, and took Zachary on what we realized was his first real adventure without his brother in tow.
It was, as much as any outing can be with a young child, a perfect day. Zach, who usually clings to me for dear life on any amusement, reveled in the experience of being a flying fish, and even resisted exiting Elmo’s caterpillar ride when he vociferously protested it had ended prematurely. At first he was terrified of life-sized Cookie Monster, but he eventually allowed his obsessed mother to get a photo op with the fuzzy carbhound, and later warmed up to Ernie and Bert with relish. He waited patiently in line for the Elmo extravaganza, and wasn’t too riled up when his favorite monster made a fairly late debut. He even tried his first public potty, although he informed me politely that “the pee-pees weren’t coming out today”. Nothing, after all, is actually perfect.
Perhaps what was truly perfect for Jeff and me however was not what occurred that day, but what did not. The absence of angst, of trying to time rides perfectly for Justin, of waiting just long enough to get a seat at Elmo’s show but not long enough for his parents to require valium, was in itself a fourth and welcome companion for Jeff and me. While I love taking Justin places, and am grateful I can and am proud of him (most of the time) for his public behavior, there is always that constant worry, particularly now that he’s more than half my weight, that I won’t be able to subdue him if events are not to his liking. When we took Justin to Sesame Place years ago that hadn’t been our concern, as my husband could certainly overpower a four-year-old. Frankly, it was really that if I made the effort to schlep my family to Pennsylvania at 8:30 on a Saturday morning I wanted my child to behave long enough to see the damn Elmo show. I have my standards.
So I’ve come to realize, that although my children are less than four years apart and are the same gender, that sometimes, separate is required. My younger brother and I are the same distance apart, and for two children of identical genetic heritage, could not have been more outwardly different in their demeanor. In terms of birth order I was the oldest, the book-smart goody two-shoes (I remain inordinately fond of that little girl, may she rest in peace). My brother did well in school also, but primarily excelled at sports and music. He eventually became a self-taught heavy metal guitarist, and ended up being the only person I know who chose his career at ten and is actually still thriving at it almost three decades later. At the time, when we were firmly entrenched in childhood, we seemed to share little in common other than blond hair and DNA.
As children we either fought often or studiously ignored one another, which may have stemmed from the fact that he was (in my unbiased opinion) relentlessly bull-headed. Our animosity might also have its origins in my initial impressions of having a boy in the home. I can actually recall my father telling me with great enthusiasm that I had a little brother, as I sat on the floor at my grandparent’s house performing the time-honored sacred tea party ritual with my preferred dolls. I specifically remember grunting acknowledgment that I had heard him, asking when my mother would return, and ordering my grandma to give me a cookie. I also distinctly remember being disappointed I wouldn’t have a little sister to boss around, as I excelled at this with the rest of the extended family with whom I was fortunate enough to live. My father and grandma were excited, but I just couldn’t see what all the fuss was about.
He never did like my tea parties, and stopped allowing me to dress him up when he was two. Despite our differences we later became united in our disdain for what we considered our parents’ arbitrary rules, and pushed each other to test the limits as often, and as surreptitiously, as possible. He brought out my irreverent streak, for which I am eternally grateful. I, in turn, tempered his impetuousness with a reverence for not being caught at naughtiness. Perhaps that bond allowed us to circumvent our differences, for as adults, we are good friends today. My little brother is usually the first person I call when something occurs in our family, and we have inside jokes I can’t explain to any other living being. We are, in a somewhat more mature manner, still partners in crime. I imagine when I’m at the end of my life he will be the person who’s known and loved me the longest. I’ve discovered that counts for a lot.
And I wish this desperately for my boys, this communion my brother and I now share. I even wish them some animosity, for those crucial lessons that can be learned from siblings, the sharing, the tolerating, even comprehending that equal is not always fair. While they will most likely have separate interests, particularly as my oldest son’s seem to be limited to movies, faux laptops, and animated animals that spin and sing, I continue to be hopeful I can contrive moments and activities Justin and Zachary can also partake in together.
We’ve been graced with these moments over the course of the last three years, and I’ve zealously recorded them on video or with my digital camera for posterity. There is the shot I have of Justin after he scaled Zachary’s crib to examine his singing monkey toy, which resulted in a delighted infant grabbing his older brother’s hand and squealing with joy at his unexpected visitor. I have priceless footage of the two of them engaged rapturously in an Eric Carle colorforms activity, an event which not only brought the two of them together in a united reverence for the author’s work, but forced them to practice turn-taking with each other. I have photos of the two of them as bookends to my storytelling, snuggled safely up against me as I regale them with a childhood favorite, watching each child point on demand and “show” each other a pivotal plot piece. They are mostly separate in their endeavors, but we are witnessing more of these unified moments, and I am getting more creative at constructing them. This is a learning curve for me, as well.
But for once, this Saturday, I need summon nothing, for my family is ending our jaunt at Justin’s horseback riding lesson, something we have not done as an ensemble group before. When we arrive Justin is mid-way through, and I send my husband in first to witness his son’s riding acumen. Jeff is rewarded by a curious, then satisfied smile.
A few minutes later I enter the arena with Zachary, as Justin begins to round the bend and will momentarily be in our line of sight. My youngest points and declares “that’s my brother!”, which results in my oldest child whipping his head around and registering that now his father, mother, brother, and grandma, his most cherished, are all in one place to pay attention to his achievement. He beams, sits up a bit straighter in the saddle, and continues to regard Zachary as he completes his elongated oval. There is recognition of one another, brother to brother. There is acknowledgment, and pride.
The lesson soon concludes, and a short time later we conclude the day’s adventures. As we near home Zachary orders his parents to laugh, and as we are his puppets, so grateful are we for his facility with spoken language, we heartily comply. He commands his brother to perform as well, regarding him imperiously from the confines of his carseat, and grabs his hand. I reach back and tickle the back of Justin’s knee, a guaranteed giggle spot for him, and try to evoke a moment of merriment. He does not return his brother’s gaze, and my attempts solicit only the slightest chuckle, almost imperceptible in its brevity. As always, I wish for more.
But as I turn in my seat further to explain to Zach that his brother doesn’t want to laugh right now, I look down and regard their hands, their fully clasped, intertwined hands. Justin has not let go, not repudiated the contact. As I watch, and listen to Zach’s amplified requests for mirth, I see my oldest give my youngest a gentle squeeze. I wait a few seconds, and witness him repeating the gesture again, as if he’s letting his doubting mother indeed know that it did occur. There exists, however tenuous, a bond. And that moment, that irrefutable moment of contact, of walls breached and bridges crossed, is everything.
April 26, 2010
I almost missed it, Justin’s carefully constructed art project sequestered away in the folds of his backpack, nestled among his library book, communicative device, and shoes he shunned earlier that day in school. When I noticed his creation I gently freed it from its constraints, and disentangled the lovely necklace my oldest child had made, I assume, in art class. On a whim I slung it over my head, and felt the weight of rotini, packing peanuts, and brightly colored squares bound in communion by a bright red lanyard soon resting lightly on my clavicles. I called my son’s name to remind him of our impending trip to the bathroom, and as he rounded the corner he glanced at me, kept moving, then stopped dead in his tracks. He saw the necklace, registered I was wearing it, and came bounding over to me. He gently fingered the purple, orange and yellow rhombuses so discreetly positioned on the yarn, looked into my eyes, and smiled. He didn’t require spoken language to convey his pleasure, his contentedness that his mommy admired his present enough to wear it. I hugged him tightly and thanked him for my gift, but words weren’t required to communicate my appreciation either.
We have many of these brief interchanges, our version of conversing, of connecting with one another. They are more frequent now, carry with them more depth in their meaning, more weight in the coveted glances with which he rewards me. Even six months ago I don’t believe he would have cared about my delight in noticing his necklace, nor would he perhaps have acknowledged I was even wearing it.
When my oldest child was first diagnosed with a major neurological disorder I read everything I could about autism, feeling if I could just understand its origins, perhaps I could banish it with my conviction, my relentlessness, my love. I recall learning that the disorder is thought to have several causes, some involving a disconnect between the slender neurons of the brain, some involving the inadequate pruning of the white matter so integral to brain function itself. I also remember reading many parents’ impassioned writing that autism is like an onion- that if enough undesirable layers are peeled away, we will eventually locate the veritable, healthy core of a child.
For Justin, I feel his autism is more reminiscent of this necklace; that his deficits and strengths are interwoven, irrevocably enmeshed with his true self. He stands in front of me admiring what he has made, and touches the components gently. His fingers first brush against cylindrical pasta pieces representing his synapses, then the porous styrofoam reminiscent of his potentially voluminous white matter, all separated, interrupted, by brightly colored squares. He touches the latter gingerly, and rotates them gently around my neck. I register each disconnect as it passes by; the perseveration, the impulsivity, the lack of spoken word, even the aggression it took so many years to control, that I worry still lurks somewhere in his psyche. I bear witness to them all, those hallmarks of my son’s autism, those uninvited, and permanent guests.
But I also pay homage to the thread, the strand of strings that woven together are much stronger than if they stood alone, the composite that permits my son’s offering to be a comprehensive whole rather than an assortment of paper, foam and food. His affectionate nature and loyalty, even his stubbornness, are bound together in our love for one another, in my relentless pursuit of his happiness. These elements weave together though all of the difficult times, the challenges autism will present to him, and to me, throughout his lifespan.
He ceases to spin my prize, finally content with its placement upon his mother’s shoulders. I am awarded one last glance, then he is off to other pursuits. I smile, and watch him go.
April 23, 2010
I am practically a blog virgin.
Perhaps I should rephrase. I am practically a technology virgin, as any skills (and they were limited to begin with) I had seemed to vanish once I gave birth to my oldest child seven years ago. It appears that my ability to conduct an adequate Google search, open a linked document, and, God help me, at times even cut and paste, vanished along with my waistline and my ability to retain any information longer than six seconds without writing it down. I remember years ago my friends who had already entered the realm of parenthood told me that in time, all of my superpowers would be restored to me.
Nowhere was this big, fat, distortion of the truth more apparent than when it came time to create my blog, my vehicle through which I hope to finally become the “popular girl” and propel myself to just an itsy-bitsy splash of fame so I can get my manuscript published. After months of begging, pleading, cajoling, and finally threatening my reluctant husband to sit down and create one with me, it quickly became apparent how behind the curve I was. It was as if he was speaking a foreign language, throwing around words like tags (don’t those go on presents?), domains (reminds me of the best episode Seinfeld episode EVER), RSS (perhaps an acronym for Rescue Save Surrender), and widgets (come on, really?). He was moving on to discussing the best ways to drive up my blog traffic while I was still trying to pick out my background. We were lucky we were still married by the time I officially entered the blogosphere (another word I thought he had made up).
The good news is that I am eminently trainable, and slowly I’ve acquired the skills to post, edit, and reply to comments without requiring my husband’s (hell, Justin could probably do this better than me at this point) annoyed presence. The first few times I attempted cyberspace on my own I could see the wheels literally turning in his head, reciting the words “God Kim, we just did this yesterday” and my own brain responding “Yes, Jeff. Yesterday, a veritable lifetime ago in technologyland.” I’m taking baby steps, but I’m actually retaining them, a miracle in and of itself.
I had no idea how involved all of this would be when I decided to create the blog in the first place. I really hadn’t visited too many of them, as I’ve pretty much spent the last four years just writing my book, keeping the kids alive, conducting therapy, and avoiding cooking. There wasn’t a lot of time to check out what other people were writing, and even when I did, I was too chicken to respond. This is in part because I still hail from an era where I actually enjoyed writing real letters to people I’ve actually met, and in part because when I attempted to respond I was often required to give such intimidating information as my URL, my account identity, or transcribe weird looking letters and numbers into a flashing box. None of it seemed even a bit friendly. I felt like I was once again going through sorority rush.
But, despite my own handicap, I am learning. I’m even shamelessly putting myself out there trolling the internet for people to read and respond to my posts, and of course offering to do the same for them. This is completely out of my comfort zone as I still prefer to have met someone before I ask them to do a favor for me, but I’m conquering my squeamishness and soliciting like a Girl Scout with too many Thin Mints to unload. Just call me a blog hussy. On second thought, don’t call me. Just read my blog.
April 21, 2010
I read a very disturbing post today, a blog entry written by a mother of an autistic child who was brought to school by his father the other morning, and was taunted and teased before he even set foot on school property. “He’s not normal.” “He spits.” You get the gist. The child, apparently, did not react. The father was probably scarred for life. The imagery of the event is horrifying.
One of my biggest fears when my son Justin was diagnosed with autism was he would one day be the object of torment and ridicule, a pariah among his peers. This fear stemmed in part from my years as an elementary school teacher both in Washington, DC, and the suburbs of northern VA. Contrary to popular belief, not all children are capable of great cruelty, but some, like certain adults, are predisposed to it. Also contrary to popular belief, this may not be a direct result of inadequate parenting, uncaring educators, or too much television. Sometimes, children are just inherently mean to those they view as more vulnerable than themselves. Our job, as parents, educators, and members of society, is to eradicate that desire to wound if possible, and if not, make the consequences of enacting that desire so unpalatable that the child makes a different choice the next time a situation for teasing presents itself. It is that simple.
It’s been seven years since Justin has graced us with his complicated presence, and to date, at least in my presence, no unkind word has slipped into his psyche from the lips of either child or adult. Trust me, I’ve paid attention to people in close proximity to us when we’re out and about, as I’ve felt that if some pejorative commentary were unleashed upon my child I would use that opportunity to confront the individual, and educate them about autism. We’ve had some looks come our way on occasion, and when I’ve been immersed in full battle mode with Justin I’ve obviously ignored them, as my desire for both of us to remain alive took precedence over my need to inform. The times when he’s been mildly cantankerous I’ve simply responded to looks with my own gaze, an explanation of “he’s autistic”, and a smile. The truth is, Justin looks completely normal (whatever that is), and when he’s not emitting a string of vowel sounds or flapping his arms in excitement, it would be easy to assume he’s just exhibiting bad behavior. He doesn’t have a scarlet “A” emblazoned on his forehead. I like to give people the benefit of the doubt, and just assume they’re judging for the same reason we all do – to feel better about our own ridiculous lives.
To date, in every instance, my commentary has been received with at least a smile, and often an offer of assistance. Perhaps this is because my family has only resided in either a major metropolitan area where there was a certain level of sophistication, or our town in central New Jersey where there is about one degree of separation between every resident and an autistic child. The level of awareness I’ve encountered has been extremely enlightened so far. I know I’m extremely fortunate, and I’m grateful.
I’ve also come to accept that the autism that my child experiences would preclude his understanding of most harassment, and for that I am eternally relieved. Short of physical torture (which between the surveillance techniques of his hawk-like mother and diligent teachers is highly unlikely to occur), Justin would not comprehend that a child was being mean to him, did not have his best interests at heart. He has only known kindness, from his family, teachers, therapists, neighbors, and the community at large. I don’t think he’d even notice. In a way, his autism, the disconnects in his brain, shield him from hurt. I’m grateful for that as well.
But I am also cognizant of the fact that certain children on the spectrum are far more aware of the subtle nuances of discourse than my son is, the interplay of conversation and inference. For those children aware enough to understand they’re being maligned, the harm is terrible, and can be permanent. It cannot be tolerated. And frankly, this sentiment should apply to any child, those with a label, and those without.
As a twelve-year veteran of the education wars, I have had the good fortune to witness the eradication of bullying done right. We had a zero tolerance policy at my elementary school in VA, and it was strictly enforced. Half the battle, and I cannot emphasize this point enough, was in figuring out that cruel encounters were indeed taking place. Smaller children are famous for tattling, and almost proud of it at times. Older ones sense the stigma associated with it, and are far more recalcitrant in their penchant for narking.
Understand that particularly in the upper elementary grades teachers are facing classrooms of thirty children, trying to concede to the demands of 504s, IEPs, ESL students, unlabeled children who just need extra assistance, No Child Left Behind, and in some instances, just plain crazy parents. For the most part, I believe the men and women who teach are caring individuals who truly want to be in the classroom (women particularly have far prettier and more lucrative choices than “summers off” these days), but even with eyes and ears open may miss an unkindness, or worse, unless informed by a parent or student. I am not making excuses, but we are not omniscient. In order to eradicate the problem, we need to know that it exists.
And once we know, it is the school’s collective duty to stamp out that child’s ability to torment, period. At times, this is a particularly difficult endeavor, as there may be nothing more reinforcing to that particular kid than the high received from making someone else feel badly about themselves. Some children can be deterred by a simple “knock it off” and loss of recess or computer time. For some, the need to injure, for whatever reasons (and trust me, it can be boys or girls, children from intact families or not, daycare, nannycare, or stay-at-home mom care respectively) runs far deeper. I’ve found by far the most effective way to get a child to relinquish the cruelty ghost is to make their parents repeatedly miss work for parent-teacher-principal conferences. Nothing inspires a parent to discipline like that repeated middle of the work day meeting.
Now that I’m on the other side of the divide, and have both the benefit of my years in the classroom coupled with my experiences as a parent, I recognize ultimately the burden of care rests on the latter, and in the case of the special needs child, the particularly beleaguered latter. I’ve had a number of instances in my career where I was confident I’d rectified a teasing event, even congratulated myself on discerning it and destroying it without the benefit of administration’s intervention. I’ve also had the experience of witnessing, mere hours after what I considered a personal hell-raising, the exact same torment of the harmed child by the exact same procrastinators when they thought I was engaged with other students (I will admit, it’s usually girls, they are generally the sly ones). It can take repeated sanctions to make a difference. Sometimes I required parents to act as informants multiple times simply because I missed the teasing. I was always grateful to them for telling me, for being advocates for their children.
The climate for encouraging tolerance has changed, and we as parents need to use this to our advantage. No principal wants to see the same parents repeatedly at the threshold of his or her office, demanding a cessation of a child’s torment. No superintendent of schools wants to be the recipient of multiple letters of complaint in regards to treatment of a child, or wishes to be witness to an impassioned plea by a parent at a school board meeting. Threatening mediation or legal action is undesirable, but often effective. I’ve even seen some parents take their plight to the media to seek relief. We have to do whatever it takes, but we will see the best results if we start early, and follow through often.
We don’t have much control over what happens in our communities, as often encounters with the public are brief at best. But our schools can be contended with, and it will require all of our efforts, in our already limited spare time, to eradicate prejudice. Children can change their behavior, whether it’s intrinsically motivated, or simply as a result of an all-encompassing fear of the consequences. In many respects I feel the disabled are the new disenfranchised minority, with the added deficit that many of them cannot speak up for themselves as women, African-Americans, and the gay community have done for themselves in the past. When I see how far those populations have come, I am greatly encouraged. If we as parents are relentless in our pursuit of a safe, positive environment for every child, I know we can get there.
April 19, 2010
She took her top off for billboards across London, which led to responses from Britain’s three main political leaders and a meeting with the country’s care minister. No, I’m not referring to myself in the third person (England, please, I’m excited just to get out of my house). I’m referring to Britain’s forty-three-year-old Polly Tommey, mother, editor, and autism advocate, who felt in order to get autism the attention it deserves, she needed to shed her shirt in an extremely public manner. Hell, and I thought I was a radical for writing a blog calling for Clooney to represent us.
This is not her first stint at raising awareness in a provocative way. A prior campaign included billboards displaying a postcard to Gordon Brown with her home phone number scrawled across it, promising to save the prime minister millions of pounds annually if he’d just give her a call. That led her to receive an invitation to breakfast with the prime minister’s wife. I’m certain there were scones.
Of course, as with all events surrounding autism, this one has proven to be controversial as well. Part of the issue is the effective way Tommey’s acquired her country’s leaders’ attention. Equally conflicting however, is the agenda behind the billboards. For example, she advocates the creation of residential centers for adults with autism. But this has come under fire by people who believe care for autistic grown-ups should be more widespread and not just limited to segregated housing.
Her own magazine, the one which she herself edits, has been criticized because of its emphasis on nutritional choices for autism treatment (her husband, himself a nutritionist, runs an autism clinic which features alternative remedies for combating autism’s symptoms). Finally, she is considered to be a somewhat divisive component in the autism world due to her backing of Dr. Andrew Wakefield, whose theory that there is a link between the MMR vaccine and bowel-disease induced autism has been widely debunked by mainstream medicine.
After having immersed my son for six years in Applied Behavioral Analysis, a behavioral treatment for autism that forces one to constantly analyze people’s motivations in order to achieve progress, I admit upon first reading the article about Tommey I was a bit skeptical. Was she just trying to drum up business for her spouse? Was she attempting to draw attention to her magazine, as well as enhance its circulation? Was I simply jealous a forty-three-year-old woman still had a nice enough chest after giving birth to advertise it across a nation?
The answer to the latter statement is a resounding yes, and I’ll have to satisfy myself that I, and the public at large, will never really know the answer to my initial queries. What startled me most was that my initial reaction was one of skepticism, not support. I spent my first few minutes after digesting this story criticizing her methodology, not praising the outcomes of her methods. I breezed over the fact that she too has come out and said the issue of vaccination and autism is too polarizing, and she hopes to diverge from further discussion regarding it. I, myself, was snarky, and succumbed to the very thing I criticize others in the autism community for doing. I immersed myself in black-and-white, and ignored the shades of gray. I missed the big picture.
Altruistically motivated or not, half-naked or not, Polly Tommey had a need to force politicians to examine the needs of adults on the autism spectrum more fully, and she got her wish.
I can promise you readers (and trust me, after nursing both boys, you will be eternally grateful) I will not be “disrobing for autism” any time soon. I will also continue encouraging myself to focus on the desired long-term effects of any positive type of campaigns regarding autism, primarily that they raise awareness, reduce divisiveness within the community, and create lasting and worthwhile change for adults and children residing within autism’s confines.
I admit, however, I will also continue to hope for Clooney.
April 16, 2010
April 2nd was World Autism Day (I know, my two autistic kids were home on spring break and I didn’t post to the blog, yet I was still completely aware of autism, trust me), and I’d just like to take a few minutes to draw our collective attention to a few groups of people who seem to get left out when it comes to recognition and appreciation. There is always a great deal of focus on the filmmakers, writers, celebrities, and parents who promote the cause, and all of that is of course, positive. Even though there are so many controversies surrounding the disorder, when it comes to autism, any news is good news in my opinion, as it continues to draw attention to the plight of autistic children and adults.
There are plenty of other factions however, the unsung heroes if you will, who have made and continue to make my sons’ lives, and the lives of thousands of other people with autism, easier and more fulfilling every day. There are the individuals who fought relentlessly for IDEA, the law which entitles my son to an appropriate education, in a time period when autism awareness was in its nascent stages. There are the parents and legislators, right here in my home state, who worked so diligently to pass a bill which will force insurance companies to shoulder a portion of autistic childrens’ therapeutic burden this year, for the very first time (although only a portion of the population is eligible to receive compensation, which does not include us.)
There are the teachers, aides, specialists, and directors of special education who tirelessly strive to accommodate the varying and disparate needs of all of their students on the spectrum, a Herculean task at best given today’s current educational climate. There are the many various national and local non-profit organizations that raise awareness and funding with which they aim to improve the lives of families impacted by autism. And finally, there is my favorite group, those scientists delving daily into the secrets of the psyche, teasing out the combinations of genes that create a susceptibility to autism, and the possible environmental triggers that perhaps make development of the disorder an inevitability.
I know, it’s not Autism Gratitude Month, but I am aware of the gifts these groups have made to our community, and many other people who deal directly with the effects of autism in their lives are aware as well. Sometimes we parents of autistic children are just a wee bit too busy to take the time to ruminate (or breathe, for that matter), and I just want it on record that I acknowledge, and thank, the thousands of individuals whose collective contribution has enhanced the quality of life for so many of our children, and our adult children as well.
Thank you, and let’s extend this attention shamelessly like I do my birthdays, and call this Autism Awareness Decade. It’s worked for me.
April 14, 2010
Go fly a kite. This is a truncated expression of my youngest child’s exuberant exclamation of “Let’s go fly a kite, mommy!”, but you get the gist. He proclaimed this order yesterday as I tried unsuccessfully to keep up with him at a lovely local park, his three-year-old legs pumping relentlessly toward his desired goal. As he careened speedily toward the unsuspecting family with the brightly colored cloth diamonds, the trembling shapes apparently sensed his impending presence, and attempted to catch a current to escape both their earthly bonds, and my son.
These four words evoke such special memories for me, reminders of a simpler time and place in my childhood, our forays to our family’s cottage on Long Beach Island, New Jersey. Every summer since the year I turned nine my father’s family made the pilgrimage to my aunt’s house just one short block from the beach, an event my brother and I anticipated eagerly every season. As we crossed the bridge that transitioned the modern world to the island I recall feeling even the air we inhaled was different than mainland air, as if it alone held the promise of all the adventures to come. I remember feeling we were “roughing” it then, the kids sleeping in the unair-conditioned attic loft, exchanging the television and boardwalks of home for marathon Monopoly games and long, languorous walks on the beach in the evenings. Most days and nights, the winds benevolently conceded to our frequent requests, and there was kite flying as well. Glorious, unfettered, kite flying.
Every summer my brother and I heralded the season by choosing a new kite from the nearby general store, a required purchase to replace the demise of the prior year’s airborne missile from the inevitable crash into the fence protecting the dunes, the irrevocable tangling of the string, or the occasional loss at sea. We both looked forward to the almost daily event, the feel of the wind whipping our faces, our attempts to enmesh our feet firmly in the forgiving sand, the familiar ebb and flow of string slack and taut, alternately dipping toward earth and straining toward the heavens. Flying a kite requires a serious amount of concentration, a focus on the activity at hand that precludes contemplation of anything else that was going on in our lives. Perhaps that’s why we enjoyed it so much. Its simple pleasure forced us to live in the moment.
My son’s joyful request delivers me back into that mode, that time when I could simply exist in the present, without worrying what the future holds for both of my autistic sons. I am hopeful that when I’ve extended the tradition to the new generation and purchased a kite for my child that the act of flying, the give and take of gravity, will return me to that simpler place, where the only push and pull I considered was the tether of white leash in my hand, not the intimate dance of meeting my own needs versus those of my special needs children. I hope that when we fly a kite he will be as engaged in the activity as I was, and will forget his struggles, as I once did mine. I hope that he will love the act of releasing his treasure to the blue beyond as much as I did, as much as I hope to do again with him.
He reaches his destination and approaches the unwitting family, asking with both assurance and authority to “try it please”. Their own boy graciously concedes, and without entirely relinquishing his hold allows my son to grasp tightly to his prize, encouraging him to tilt his head toward the clouds so as not to miss a moment of flight. His body remains earthbound, but I can almost see his imagination soar as he envisions what will transpire far above him. He is amazed at the distance, the singing of the string binding him to his new friend’s treasure. I am amazed as well, and grateful that my child can immerse himself in this event as I once did.
And I am grateful as well for this moment, this connection to my youth, and the ability to share it with my boy, my beautiful, complicated boy.
April 12, 2010
I’ve decided my oldest son should live on a farm someday.
This is a decision I’ve made not because I like free vegetables, although I do. I’ve never quite made it to eight servings a day, but ingesting all of them in a twenty-four hour period is something I aspire to achieve. I still have ambitions.
No, my son is going to live on a farm someday because I want him to have something worthwhile to do as an adult, to participate in a job in which he’ll take pride and satisfaction. I also want him to reside on a farm because there is something there he loves almost as much as movies on his DVD player, and cute fifth grade girls who play with him at recess.
My son has a thing for horses.
Quite honestly, I never would have thought to try horseback riding with my six-year-old autistic son if it hadn’t been for a free day of lessons that Parents of Autistic Children (POAC), our local autism organization, had sponsored. Justin has never really engaged with animals, has generally avoided them, and has even regarded my mom’s dog with suspicion. Plus, I’ve always considered horseback riding to be an expensive sport, and since Justin will cost the equivalent of four neurotypical children, I didn’t think the activity was in the cards for us.
But on a crisp fall day this past October my mom, son, and I drove out to what passes for farm country in western New Jersey, and decided to give our equine friends a shot with Justin. If worst came to worst, even if he hated it, at least it would kill a Saturday.
I figured he’d probably give it a try if we encouraged him from the sidelines, and he lived up to our expectations. He tentatively climbed up on that horse with three people flanking him on both sides, held on for dear life, and at each turn, regarded me with only a slight air of desperation. Since each child only got fifteen minutes on an animal I hoped he’d make it through his timeslot without either sliding off his pony or protesting vociferously, and he did. He even seemed mildly happy about the event afterwards.
When I found out the owner had a slot open on Saturday afternoons for lessons, I decided to jump on the opportunity. I thought we’d give it a month, and if he remained this grim and declined to loosen his death grip on his horse du jour’s mane, we’d call it quits. I’ve found with Justin, you never really know if he’ll like an activity unless you try it. Sometimes, you have to try something many, many times.
Over the last few months he’s fallen into a rhythm with Crackerjack, his newest host. He has relinquished the reticence he experienced during his first few lessons, and instead embraced an exuberance toward this activity that I usually only see him reserve for snack-time. On weekends that he rides, as we pull into the stable, he strains against the harness on his car seat that protects both him and his mother from his Houdini-like ability to escape, eager to be released from its confines so he can visit his old friend. He races inside the barn, and I have to remind him that riding a horse with a full bladder isn’t the most palatable prospect as I lead him to the rudimentary bathroom. As I do so he always glances through the large bay window into the corral, and his entire body shakes with excitement at the prospect of a ride to come.
At first this activity was solely for him, but over time, it has come to have great meaning for me as well. Every Saturday, come rain, sleet, show, or shine, I lead him into the ring where his horse patiently awaits him. I barely have to assist him now as he climbs the mounting block, so steadily and with such confidence. As I watch him ascend with such assurance I am reminded of how difficult it was for him to walk, how six months after he was supposed to be making my life a holy hell by his mobility, I watched him begin to take tenuous, faltering steps, and was concerned at his lack of overall coordination.
After attaining the summit of the mounting block I see him attempt to place his foot securely in the stirrup and swing himself over the waiting back of his ride, and I recall how distressing it once was just to secure him in the car to arrive at an outing such as this, and how he now revels in adventure.
I watch him firmly grasp the reins as he steadies himself on his charge’s back, and see him tentatively caress the mane of his pony as he attempts to convey his affections. There was a time in the not too distant past that he avoided all interactions with anyone not genetically related to him, and I am reminded just how far he has come, how he now seeks out the interplay of discourse, the give and take of simple social interaction. He is no longer afraid to connect.
I find so often, as I am immersed daily in both the tragic and trivial consequences of autism, that I forget to notice his accomplishments, the small strides and great leaps that comprise his progress, that contribute to his peaceful, happy soul. These lessons have given that back to me, have offered me the opportunity to appreciate his courage, to be proud of him for every struggle he surmounts, and even those he doesn’t. This farm extends to him the gift of pleasure, and affords me the opportunity to reflect. I am thrilled to have provided it to him. We both learn something here.
And as I watch him round the corner of the barn, barely glancing at me as I enthusiastically cheer him on from the sidelines, I realize anew how much he has taught me to appreciate the smallest joys, the slightest increments of achievement, the pleasure of surprising him with a newfound love. This gift, he bestows upon me.
April 8, 2010
It is my fondest wish that I survive my oldest son.
No, I’m not suffering from Munchausen’s, Munchausen’s by proxy, or any variation thereof, nor am I hoping for our collective demise to occur anytime soon. I am committed however to breathing until I’m 106, which will make my son 70, and although that’s a bit short of the life expectancy of the average white male these days, I figure that’s still a nice long life. I think I’ve got a shot at being a centenarian, as my great-grandfather on my mother’s side made it to 99 in an era where he should have been dead at fifty. Plus, there’s that daily segment on The Today Show, where Sallie Sue and Gertrude Louise smile their toothless grins at the camera, while Willard Scott reads us their inspirational advice on how to outlive your welcome. It never seems to include anything about their husbands.
So, I’m going for it, and I’ve taken steps to ensure I get there so I’ll always be around for my son. I exercise daily now, eat more vegetables, have limited my wine and chocolate (in theory), all in the name of good health. The thing is, I simply have to live beyond the parameters of good taste, because I can’t imagine leaving Justin on this earth without me. The thought, usually the last one I have before I slip into slumber each evening, is simply unbearable.
I imagine most of us, if we can still remember our names at the end of our lives, are reluctant to leave our loved ones. I’m guessing it’s because we know we’ll be missing things, milestones with grandchildren (if we weren’t too old to have them), or the satisfaction of bossing our children around into their fifties. You know, all the main reasons we endeavor to reproduce at all.
I am certain, if I’m granted the ability to retain my saliva in the appropriate orifice and am remotely cognizant of my surroundings, that in the moments before my passing, I will not be in a peaceful place. I will, quite frankly, be freaking out. It’s not the pretty picture I envisioned for myself before parenthood, where my children would be gathered around me (my spouse would be dead, the men always go first), grandchildren would be texting their friends and hovering uncomfortably by the doorway, and some fabulous Stevie Nicks tunes would send me off to my great reward. Said reward would of course include pretty drinks, an endless array of dark chocolate, and ten consecutive hours of sleep a night without mandatory bathroom breaks.
The truth is, I feel I deserve to go peacefully, as I was yanked into the world prematurely and by emergency C-section, and I feel I’ve earned a smooth exit. For me, that means knowing Justin will not be left to fend for himself for years without his mother to protect him. It means not worrying about him being harmed in the group home he will surely reside in for at least several decades during his adulthood. It means not perseverating on who will love, or at least like, the man whom I’m certain I will always think of as my little boy, the child who despite his autism has always sought out touch, been generous with his abundant affection. It means being able to relinquish the sadness of knowing he won’t understand what dead means, and won’t comprehend why mommy isn’t visiting him anymore. It means Justin will not be required to reside alone, with no one left who cares to cross the bridge between his world and ours.
And this thought, this fear, is at the crux of the great divide between parents of children with lifelong, debilitating disorders, and those with children who do not. It is a constant companion this fear, and for me, my greatest daily challenge is just to sequester it somewhere out of reach so I can move forward with my day, and not be completely paralyzed by the implications of dying before my child.
So, wish me luck. I’m buying vitamin C and ginkgo biloba in bulk so that if I make it to 2073 I might still remember my son’s name. It’s a goal.