May 28, 2010
We’ve started a new ritual chez McCafferty, a routine which I hope will promote a greater bond between my boys. This newfound ritual occurs at the end of the day, after meals have been consumed, the invariable video has been watched, and not enough toys have been put away. For me, this is my favorite time with both of my children. It is that rare occurrence when requests for juice, toys, food and an innate need for every second of my attention tend to be ameliorated by a greater need to take a bath together, and in the case of my oldest son who is generally struggling to remain conscious by this time, is also coupled with a desire for sleep. We’re not so fortunate with our second child, who employs so many diversional tactics to stave off bedtime that I’m certain he’d be an excellent military figure, but perhaps one day that too will change. I’ll have to wait and see.
My husband and I used to separate the boys for their respective bedtime agendas, in part because for the longest time they craved unconsciousness at different junctures, but mostly because I thought Justin would become upset if he had to share me. For years sleep preparation duty for my oldest has generally been my domain, and I admit in some ways I didn’t want to conduct that time with anyone else. Justin is perhaps at his happiest in the evening, filled with impromptu hugs, kisses, and languorous stares I don’t often receive when I’m competing for his attention from one of his various toy laptops. At nighttime, however, he is snuggly, and he loves his mama. Since I’m huggy for a WASP, I confess I adore this time too.
In an attempt to promote “brotherly love” however we have altered our regimen slightly, and introduced shared bathtime to the boys, an event I wasn’t certain would be met with a great deal of enthusiasm by either party. In many ways Justin is a slave to his rituals, and Zachary is an attention hound, so changing any routine or inventing one in which my youngest is not the star attraction can be dicey. After several consecutive nights in which I used too much hot water for Justin and relegated my youngest child to a tepid bath we finally decided to go for it, and make cleaning those two little boy-bodies an ensemble effort. It turned out to be a wonderful idea.
Zachary, who relates every experience to an encounter with a car or a train, quickly deemed Justin to be the engineer in this nighttime play, which of course rendered his lordship to be the loyal caboose. He takes great joy in bossing his older brother around, telling him to move up, sit down, or be still for the end of bath task where I shoot saline repeatedly up my son’s nose to stave off recurrent sinus infections (nothing says love from an autistic child like letting his mother employ a netti-pot). Zach gleefully pours sudsy water down Justin’s always unsuspecting back (and sometimes his head), and takes great pride in pronouncing that due to his efforts, his eldest sibling is now “clean and sparkling”, a phrase whose origin I am still trying desperately to discern. Justin, ever tolerant of the vagaries of his youngest sibling’s affections, always sits there, and takes it. On occasion I have even witnessed the merest glimmer of a smile as Zachary produced yet another tremendous splash, a geyser of water that invariably soaked his mother’s carefully constructed outfit on one of those rare nights she was committed to getting out of the house before she was actually committed.
Perhaps my favorite portion of our new nighttime ritual occurs at the bitter end of the evening, after skin has been scrubbed, potions applied, teeth rendered clean and healthy. Most evenings, as Justin has settled into his glider with me, somehow arranging his elongated form into a semblance of order that no matter his age always seems to mesh with mine, Zachary will make his entrance. There is no hesitation, no equivocation on his part. He has a duty to fulfill, and like almost everything he does, he will make certain he performs it. This latest job involves bidding his brother a good night, and sealing the commandment with a hug and a kiss. The first few times we attempted this scenario we had to prevent Justin from pushing the unsolicited affection away, had to “fake” an embrace by stretching my oldest’s arms just briefly around his younger brother so he would not feel rebuffed.
Not everything has changed as the weeks have gone by, and perhaps if you didn’t know Justin, you’d never notice the slight nuances of reciprocation over time, how he now looks for his nighttime benediction, indeed stares at the doorway from my embrace as if summoning his sibling. He still requires physical prompting for the hug, but there is a definitive smile on his lips when Zach enters Justin’s previously sacred arena, and continuous eye contact while his younger brother enacts his now-preferred ritual. It’s not the interaction I’d envisioned in my pre-baby days (of course in that scenario I envisioned two daughters two years apart, guess I missed out on that boat). It’s not even close to the richness of a relationship I’d hoped for when my husband and I planned to have two children, a plan conceived in part because that meant eventually I’d no longer have to engage in the terrifying boredom of continuous imaginative play with young children. I know my limitations.
No, it’s not what I thought they’d have, but it makes them happy, and by extension, pleases me as well. For now, it’s just good enough.
May 26, 2010
I’ve been sad when other dramas have departed the big screen, none more so than when Sex and the City went off the air six years ago. I remember that evening, recall telling my toddler that “short of him stroking out Mommy was going to see this episode live, so he’d better behave and sleep tonight” (I am just that kind of mom). I was disappointed and mildly disturbed at my lack of closure when The Sopranos went off the air, and my mourning for Six Feet Under was mitigated only by viewing the second last best fifteen minutes of a television series EVER (thanks Alan Ball, genius emeritus).
I also spent ten minutes sobbing in my husband’s arms when I realized not only was Jimmy Smits dying on NYPD Blue, but the little boy who spoke to him in his dreams was his unborn future son, which really put me over the edge (I know, that wasn’t a series ending, but I felt compelled to get that in here somehow). After my children came along I found I didn’t get out much anymore, so good television series, and fortunately there have been many as of late, have been a source of escape for me. I’ve relished every minute, looked forward with unswerving loyalty to every SATC movie that will ever be made, and contributed to every actor’s third luxury home by owning every DVD of each series. I am a dedicated fan.
And then, there was Lost.
Lost aired when my family and I were still living in Northern Virginia, just weeks before our lives would be changed forever by the brusque, slightly irritated declaration of “autism” by our son’s pediatrician as he shoved the names and numbers of some developmental pediatricians into my shaking and outstretched palm. The weeks that followed rendered his parents lost indeed, as we struggled to figure out what to do, who to call, what therapies to choose, what this meant for our lives, and what this meant for our son’s future. My husband, fortunately still employed, got to put it all behind him for the lion’s share of his day when he went to work. For me however, it was continuous, consecutive fourteen-to-sixteen hour days of chores, therapy, general child care, and the sinking feeling that this intruder into our lives was permanent, that my son would not be one of the fortunate crew who would live with his ailment yet be fortunate enough to lead an independent life. Lost became my invaluable escape from autism, and the knowledge that at least twenty-two hours of the year I’d have to stretch my brain for something other than the ramifications of my son’s neurological disorder was a great comfort to me.
I was not the only person captivated by the rich story lines, intense character development, and tantalizing mythological references that comprised the television show. Even famous people have been seduced by its magic, as when Rainn Wilson outed himself as “gay for Richard” after that particular character’s backstory episode aired (I must admit, as much as I loved gazing at those miraculously unlined eyes I reserve my gay for Tina Fey – Mean Girls and 30 Rock will forever have my heart, as will that Brownie Husband segment on SNL). Lost has been viewed and revered by millions, and I’m proud to count myself and my husband as part of the flock. I will miss all of it dearly, from Jeff’s and my unwavering commitment to view every episode together, to our discussions afterwards as we pretended to understand what had transpired, as well as when we fooled ourselves that we could dissect the missives of the brilliant Doc Jensen on EW.com for hidden meaning the following day. We once tried to play “drink mythology” as a way to reward ourselves for figuring out literary references as an episode played out, but when we quickly realized our palates would remain primarily dry we ditched that approach, just laid back, and took it all in. It’s been a wild ride ever since.
It hasn’t just been the excellent writing, the consummate acting, the eye candy of Matthew Fox or Josh Holloway, or those fabulous one-liners intermittently dropped by Jorge Garcia on his loyal viewers. There have been the themes to explore, a handful of which I feel pertain strongly to my life as well. Sacrifice. Redemption. Choices. Faith. Producers Lindelof and Cuse have included something for every viewer, should they care to drink at the trough.
All of the characters on Lost had to make gut-wrenching sacrifices in order to grow. Clearly, as any good parent of a child with or without a disability does, my husband and I have made sacrifices too. Our relocation to New Jersey from Virginia somewhat stalled my spouse’s career, and definitely tanked mine, at least for the time-being. We left behind a fairly rocking social life for two almost middle-aged people with a child, and found it’s taken almost four years to begin to build one again. Then of course there’s the financial aspect of autism, where we pay out-of-pocket for every therapy our oldest has, because our adopted state south of the Mason-Dixon line has yet to get on board in the insurance wars. We’ve given up stuff. The truth is however, we’re parents. It’s our job.
I’ve found, through sacrifice (which trust me, I was not inclined to make too many of prior to giving birth), that I am a kinder, gentler person. Letting go of my singular desires for the good of another person, particularly a child I adore, has redeemed me from the somewhat career-obsessed/what are we doing Saturday night individual I once was in my twenties and early thirties. Having a child with a major neurological issue forced me to dig deep into my soul, question everything I thought mattered. My son, and his autism, redeemed me in a way, encouraged me to make better decisions about how I spent my time, more insightful choices as to what would define my life from now on. He’s made me a better person.
As I’ve watched each character on Lost struggle with the choices that have lead to redemption for many of them over the past six years (many were engaged in battle in two worlds simultaneously, I should stop complaining), my husband and I have endeavored to make the right ones for our son, then our sons, then our entire family as we’ve taken this journey. I’m not certain the choices we’ve made have always been correct. Some days, just like the characters on Lost, I think we haven’t even come close. I’ve witnessed the actors fight to exit the island with all of their will, and sat mesmerized as many of them realized departure wasn’t the answer, that escaping a geographical location would not release them from their inner torments. I mirror their conflict when I contemplate how I regard my sons’ “extra”, when I attempt to consolidate my acceptance of their plight with my understanding that I will never be completely at peace with it. I understand it is ultimately my choice as to how I view this disorder and how it manifests in my family. It may truly be the sole event over which I have any control.
I have to admit that the one theme that has resonated most with me over Lost’s tumultuous journey is the one embodied by the good doctor, Jack Shepherd. Watching his tenuous transformation from a man of science to a man of faith for more than half a decade has enabled me to define my concept of faith, and to whom I bestow it upon. Back in the day, my faith was unquestionably linked to my parents and grandparents, then as I grew older came the subtle shift to friends and husband. Ultimately, my choices have lead me to a greater faith in myself. This feeling, this certainty, is stronger than any I personally have ever encountered in my Presbyterian parish when I was growing up, or later in the great cathedrals of Europe as I prayed and waited for a feeling, a moment, even the slightest sign that indeed something was out there greater than myself. I tried. It never came. It hasn’t to this day.
But what has evolved in me is a confidence that although there will be bumps along the road of life – polar bears, Smoky, a disastrous detour of a storyline – eventually my husband and I will figure it out. Sometimes it won’t be pretty. I have not been above imagining a sideways world myself, one without sleepless nights, the vagaries of intermittent OCD, and a seemingly endless supply of poop. I had twenty months of “normal” with my second son, and although that experience was difficult at times too, it never carried with it the emotional pitfalls that an autism sentence inherently conveys, and for me that has been the most difficult concept of all to transcend, the idea that this is permanent. There is no escape for this family, no plane that might or might not be blown up to whisk us away from autism island.
I have learned, however, that a fairly happy ending is indeed possible.
I know there are naysayers, but for this fan, I now feel this is THE BEST ENDING OF A TELEVISION SERIES EVER. No, not every mythological question was answered, and we’ll never know how long each of the characters lived in their parallel universe, and how they died. I do know however, that as we watched Matthew Fox’s eye close in the only possible last scene that could have given me closure, my husband and I had already been bawling for twenty minutes and had vowed at least six times to become better human beings.
I hope it lasts.
So for now I’ll say goodbye to the show that has followed my family’s progress from downright miserable to most days enjoyable, and at the very least, tolerable. I will count the months until the six season box set is made available for my viewing pleasure, and will voraciously explore every extra, deleted scene and actor’s chat made available to me, save the choice to be regaled by the aforementioned options in Spanish. I will hope for yet another hit show or movie for Matthew Fox whose work I’ve enjoyed since his Party of Five days, and pray that no other network will feel compelled to try to emulate Lost’s success with some flimsy replica which I will be forced to disparage. Some things in life, and in art, are simply epic, and cannot be repeated.
To the writers, actors, directors and producers of the show (and the craft services employees who kept them happy), I bid a fond adieu, and my thanks for six incomparable years of entertainment.
Your fans, are indeed, lost without you.
May 25, 2010
Hello to my faithful followers…
Since I’ve learned in life there really are no rules, I’ve decided to try something a little different on Tuesdays and Thursdays, as I’ve had criticism regarding the vast void that is generally mid-week on my blog. Since I’m confident (due to how time-consuming it is to actually keep two small children alive) that I won’t be producing more than three of my little missives weekly, I thought it might be nice to hear from some other bloggers as well. One rule I do adhere to is it’s nice to share…
So, on Tuesdays I’d like to repeat my Gratitude Attitude spot, and in part continue to thank and promote the women who have so kindly sprung me from complete technological illiteracy and dragged me, in my limited way, into the blogosphere. I’m going to couple Gratitude Attitude with Tuesday Tips as well, a column which will feature a different subject weekly as well as a variety of contributors. Contributors may remain anonymous, or I will happily print your name/website/business as well.
On Thursdays (I know, you’re on the edge of your seat, admit it) I’d like to invite guests to submit a blog entry of their choice which may or may not relate to that week’s Tuesday tips. I’ve been asked if I have guidelines, and at this point I’d have to say just please make the selection slightly less wordy than “War and Peace”, and appropriate for public consumption. I am welcome to contributions for both spots from moms (or dads!) of children with disabilities who are not on the spectrum as well.
One last caveat…through my Tuesday and Thursday spots I’d like to provide a more widespread forum for parents of children with disabilities to provide more practical tips for other parents, and a place to share their views on raising a child with a disability as well. These contributions will be their ideas and stories, and not necessarily reflect the viewpoints of those of autismmommytherapist.
First and foremost, many thanks to my faithful readers and “responders”. I know your time is limited, and I truly appreciate the effort!
I’d like to thank Mary Lachenauer-Craig from POAC for foisting my blog on practically everyone she’s known since birth, and for encouraging me to ask for favors from people I’ve never met before. Thanks Mary!
To my Facebook facilitators, Yvonne Deane, whose prowess on this social network impressed even my husband (and that’s saying something), and to a wonderful author, Kaitlin O’Riley, (http://www.kaitlinoriley.com/) for answering all of my inane follow-up questions.
There were many.
To Cindy Toomey, who convinced me that chat rooms weren’t so scary after all.
The blogs listed below are written by women who have either promoted my own writing, or given me suggestions on how to increase my following. Some of these blogs pertain to or are also written about children with disabilities, and some are just great fun to visit. I highly recommend taking a peek:
The last site was kind enough to feature one of my entries last month, and is a safe and exceptionally cool place for children to not only have virtual pen-pals, but to enact some good in the world as well. I recommend taking a look at this site, it would be a wonderful resource for teachers as well as parents.
Tuesday Tips: “Three Things I Wish I’d Been Told by my pediatrician on Diagnosis Day”
(from LZ, a parent of a child on the autism spectrum)
1) This is not your fault. It will not be easy, and is scary, but you can do this.
2) Get hold of your Early Intervention intake coordinator today. Here’s the number.
3) Educate yourself now, and as much as possible, on this diagnosis. You are going to have to be the expert/advocate for your child. You are the one with the vested interest in seeing him/her do well, and you are the one that is going to have to navigate the system and get him/her what he needs. Find a developmental pediatrician.
Tuesday Tips: “Three Things I Wish I’d Been Told by my pediatrician on Diagnosis Day”
(from Babette Zschiegner, a parent of an autistic child, and a coach)
1) There is support out there… here is the name of a mom (or coach) that you can contact if you are feeling overwhelmed or just need to talk.
2) Things change. Some kids do improve and some even lose their diagnosis all together. Things your child can’t or won’t do now can all of a sudden become his favorite thing in the world (like my son who couldn’t stand the feel of sand on his feet now would spend the entire day at the beach if he could).
3) Even though you’ve just been given this diagnosis… your child is not the diagnosis… he/she is the same beautiful boy/girl on the inside. He/she is a unique individual with many gifts to share with the world and they might just end up teaching you a few things along the way! So hold on tight this journey will be full of ups and downs but try and accept and appreciate every moment!
May 24, 2010
I know. I’m tempting fate by writing my own obituary, but I’ve always been a “big picture” girl, have perennially enjoyed mentally fast-forwarding to the end of something to see how it worked out, then scrolling backwards to figure out the necessary steps to get there. It’s how I worked as an educator, how I acquired a husband, how I view my kids’ childhoods (hell, in Justin’s case, his entire life.) Paint the picture you want, make the brush strokes to complete it. For the most part, as a life philosophy, it’s worked for me.
The downside of this philosophy is that I spend a great deal of time mentally ensconced in the future, and can sometimes miss out on life’s little moments. I view life, particularly the pieces related to autism, as a giant chess game (which, by the way, I suck at), with one false move proving irrevocable to success, and possibly resulting in capture or decapitation.
Not that I put any pressure on myself when it comes to my kids.
For better or worse, I’ve accepted this is who I am, so I will continue to plot, perseverate, and scheme when it comes to choices for my kids, whether it’s in regards to education, where they’ll reside, what they’ll (hopefully) eat, who their friends will be (sure Kim). I’ll make mistakes, of that I am certain. But hopefully the vast majority of my choices will result in a full, healthy, happy life for them and for their parents as well. I will also continue to wish for more advances in the realm of science research for autism, as well as improved Early Intervention services and better public school autism programs. I will continue to yearn for increased opportunities for jobs and housing for autistic adults, improved insurance reform, and better acceptance and understanding of autism within the community at large. Hopefully, these wishes will one day come to fruition, and this is how my obituary will read.
Since I like to control everything, you could bet there was a good shot one day I would write my own. Here it is.
KIMBERLEE RUTAN McCAFFERTY
March 15, 1967- March 16, 2073
(Had to get one last piece of birthday cake in there)
Kimberlee Rutan McCafferty, 106, who died in her sleep (one of her favorite places) on March 16, 2073 of natural causes, was known in her community for her autism activism, her writing about the disorder, and her commitment to her two sons.
Ms. McCafferty spent most of her formative years on the Jersey shore, where when not begging her parents to drive her to the beach, she could generally be found with her nose in a good book. She later attended Dickinson College, where she majored in French and was fortunate enough to spend her junior year abroad. She subsequently discovered she had a marginal aptitude for languages, but was gifted in travel, croissant-eating, and drinking at cafes.
After a brief post-college stint back in the Garden State where she attended Rider University and acquired her elementary education teaching certificate, she made the semi-bold move to leave home and settle in Washington, DC. She would spend the next fifteen glorious years teaching in both the DC public schools and in the Fairfax County, VA public school system, completing an M.Ed in administration from the University of Maryland, and having a blast with her eventual husband and friends. She adored those years, and was often quoted as saying DC was as much her home as her native state.
Eventually she and her husband, Jeffrey McCafferty, realized they had become one of those obnoxious couples who forgot to have a baby. After a few years of arduous fertility treatments and several IVF cycles they were blessed with their firstborn son, Justin Perot McCafferty. He would change their lives irrevocably.
Justin McCafferty was diagnosed with autism in 2004, seventeen months after his introduction to the world. Ms. McCafferty was soon made aware that despite living mere minutes from the nation’s capitol the Early Intervention system in Virginia was grossly inadequate, providing only a fraction of the required hours of therapy her son needed. Since she was a former educator, Ms. McCafferty received training from an excellent autism agency, and subsequently conducted thirty hours of therapy a week with her own toddler for the next consecutive fifteen months. This experience so frustrated and exhausted her that she later dedicated a good portion of her life to making certain that every state in the union provided adequate early instruction to children on the spectrum. She was known to remark often how gratifying it was that research had finally afforded the opportunity to diagnose autism at birth, and with the new federal mandates requiring sufficient therapeutic intervention in place, how equally rewarding it was to know that every child in America could take advantage of the opportunity to make progress.
After realizing her local school system’s autism program, though well-run, could not meet her son’s need for individualized attention, she uprooted her family and brought her son and husband, the latter kicking and screaming, back to her former stomping grounds of New Jersey. She was known to say how she missed her adoptive home desperately, but enjoyed the benefits of living closer to relatives and tri-state area friends, good pizza, and of course, her beloved beach. A few months after her return she was astonished to discover a miraculous undeclared souvenir from her 10-year wedding anniversary trip to Aruba, and eight months later was graced with her second son, Zachary. She was known to comment that if she and her husband could get pregnant naturally after all their years of fertility treatments and experts telling them it was impossible, then anybody with a uterus should be able to do the same.
Her son Zachary developed typically for twenty months, then succumbed to regressive autism. Fortunately he and his parents took immediate action when the signs presented themselves. He was already residing in a state which recognizes an autism diagnosis, and was soon receiving many hours of intervention weekly from his therapists, and his much less exhausted mother. He responded beautifully, and within a few years was stripped of his special education status, mainstreamed into regular education, and was generally driving his parents insane with his incessant questions and “testing”. Ms. McCafferty is known to have said repeatedly how grateful she was that her native state provided such excellent instruction for her youngest son, and how grateful she also was that she didn’t have to conduct it solo.
After slowly, slowly, slowly, acquiring the necessary technological skills to compose a blog Ms. McCafferty eventually curried the favor of enough readers to have a “following”, which resulted in the long-awaited publishing of her manuscript. She is quoted as saying the day she signed the rights away was one of the happiest of her life, right up there with her wedding day, the birth of her children, and finally acquiring the necessary knowledge to correctly employ her DVR.
For the next several decades Ms. McCafferty was fortunate enough to see some real advances in autism research, and although a “cure” has yet to be found, there are now better medications available for alleviating some of the autistic symptoms that so tormented her own children when they were young. Through her writing and public speaking, Ms. McCafferty felt she played a miniscule part in watching sweeping reform subsequently unfold for autistic children and adults. She lived long enough to see some form of core therapies made available for autistic infants and toddlers in every state of the union, and watched as state after state capitulated to pressure from parents, and finally required every teacher of autism to earn an autism certificate as part of their university special education program.
She retained her faculties in sufficient enough form to witness all fifty states require insurance coverage of autism’s core and ancillary therapies, and was gratified to see a vast increase in employment and group homes nationwide for autistic adults able to benefit from such programs. Ms. McCafferty was a great public supporter of the farm where her son Justin eventually worked and resided, and was often seen mucking out stables, not too proud to return to her farming roots herself.
Ms. McCafferty was widowed in 2062 when her long-time companion, Jeffrey McCafferty, died swiftly and painlessly on the golf course at ninety-five. She missed him, but was gratified they had over sixty years together, much of it, despite difficult times, spent laughing.
Survivors include her oldest son, Justin McCafferty, who will through the benefits of wonderful state programs continue to reside on his beloved farm, with his brother acting as benefactor, and friend; her youngest son Zachary, an engineer; his wife Madeleine (indulge me, that was supposed to be my daughter’s name); their beautiful daughters, Emma and Margeurite (okay, I had a French theme going); and their sons, Tyler and Ryan. Collectively, they were Ms. McCafferty’s greatest joy.
Since most everyone Ms. McCafferty once knew was already dead, she requested a simple service at the Presbyterian church where she was married, and whose grounds have cradled so many of her relatives over the last two centuries. A simple marker will be placed in the cemetery in remembrance, followed by her family releasing her ashes over Sandy Hook, New Jersey. Her funeral instructions have been said to include the words “don’t forget to duck”.
Per usual, Ms. McCafferty followed through with her death ritual to the last detail, and created her own epitaph. It reads as follows:
She was tired. She was relentless.
She still had a great time.
May 21, 2010
This past Friday afternoon I summoned the courage both to wake my youngest son early from his nap AND brave Route 34 at rush hour, and make my thrice-yearly pilgrimage to an appointment with my sons’ neurodevelopmental pediatrician. I have been making these runs to various specialists for six years now, and as I poured my growling, lethargic offspring into his carseat for the thirty minute trek I briefly recalled how these visits used to be emotional landmines for me. No matter how kind the practitioners were to us (and believe me, not all of them had any clear affinity for children), I usually concluded each visit with a take-home gift of a dozen sodden tissues, or I’d barely make it to the car until the waterworks commenced.
It wasn’t that they were nasty to me (most of the time), just that in the space of a few minutes and several pertinent questions put to my non-verbal boy that all of our progress could be whisked away, buried in what I termed his “litany of lacking”. With my second child however, one who in particular was doing so well, I just couldn’t manage to summon the appropriate dramatic reaction, was instead annoyed we’d miss the walk I’d planned to take to work off the extra Hershey’s kisses I’d had that morning.
I have my priorities after all.
As we rushed down the highway in my usual “ten minutes late” mode to every appointment, I decided to be mature, and instead of blasting Stevie on our journey I chose instead to “prep” Zachary for his encounter with our venerable pediatrician. I asked him what he’d say when he met her (I got “hi, I’m Zachy”), and queried him about his age (he’s three, and has the requisite fingers to prove it). I even got a bonus response regarding his gender, in case we weren’t certain. I wondered how much Dr. P would remember of Zach’s demeanor from our last visit six months ago, the one where he barely looked at her (although really, how compelling IS a pediatrician to a two-and-a-half-year-old), and only reluctantly and intermittently responded to her questions.
During that fall visit he had also failed at my favorite test of all, the time-honored tradition of “lay out three pictures and tell me which one is an animal, etc.” game, an endeavor in which many autistic children tend to suck. Zach was true to his peeps that day, and although he quietly identified most of the photos displayed for him, he could not for the life of him tell anyone what they did. This inability to perform did not concern my husband one bit, as he was so thrilled with Zach’s overall progress. I however personally plummeted into a shame spiral, depressed that after all our efforts he couldn’t even identify Lassie. I was pissed.
Today, however, I was hoping to knock our practitioner’s socks off. This is what now constitutes a thrill for me in my daily life.
As we unerringly made our way to her office (thanks to the witchcraft of my newly installed GPS, which I employ religiously despite the fact that I’ve been to this office literally a dozen times) we ran through the gamut of basic greetings, colors, shapes, nursery rhymes, etc., and eventually I decided to up the ante a little. Sometimes my son’s pre-school teacher gives him “homework”, and since I’m a former educator BY GOD I will support his instructor in any way possible. Zach’s latest assignment was to try to memorize his address, and since I’ve actually been blessed with a child who might not only get lost some day but could actually tell people where he resides, I was determined he would get the facts down cold.
We took this assignment very seriously, with mommy repeatedly pointing to the numbers on our home until they rolled off of his tiny tongue, and taking even more calorie-burning walks around the neighborhood to identify our street sign at every appropriate corner. We even made field trips to as many “welcome to town” signs as I could locate, and slowly Zach acquired the necessary information, eventually rattling off house number, street and village with ease. I was gratified to learn that he generalized this information to school, and was comfortable informing his teacher (and apparently anyone within earshot) of where he lived. I personally was excited not only that he’d conquered this task, but had retained the knowledge for more than a week.
One skill down, only five million more to go.
Eventually we reached our destination, and walked into the spartan offices of our neuro pediatrician. After fifteen minutes of watching Zachy show off his coloring acumen to the pretty pre-teen girls waiting for their sister to conclude her visit, we were finally called into the throne room, and the interview commenced.
He nailed it.
He responded to every question correctly, eliciting somewhat of an astonished response from our usually slightly dour physician. He replied to all of her commands with gusto, copied a circle with his broken orange crayon with ease, built a tower for her AND counted the blocks required, just to show off. If this had been the SAT’s, he’d have been destined for the Ivy League college his parents wouldn’t be able to afford to send him to.
After the weighing in and the requisite physical exam were conducted, complete with Zach’s request to look in Dr. P’s own nose with the cool flashlight, I was told he could descend from the exam table, and congratulated on his progress and my efforts on his behalf. I admit that I found this most amusing as I am certain the majority of Zach’s improvement is due to his innate ability to respond to therapy, not any magic on his mother’s part, but for once I’m in a good mood at a doctor’s office, and I take the compliment.
Of course, I can’t just let things lie. I have to push for the gold star, because God forbid a glowing report regarding my youngest son’s development should be enough for me. I am still an educator, after all.
After gathering Zachary’s twelve toys and persuading him to relinquish the blood pressure gauge for “next time”, I say goodbye to our positively beaming doctor, and go for it. I ask my youngest son to tell the nice lady where he lives, a question I’ve put to him dozens of times over the last few weeks, one in which he now always answers correctly and with great joy. He reacts by carefully handing me his sippy cup, and turns to look at the kindly older woman regarding him with amusement.
He pauses for dramatic effect, then responds enthusiastically “in a house”, and bolts for the waiting room and yet another set of adoring pre-teens.
Apparently, my son has his priorities too.
May 19, 2010
I yelled at the man from the Diabetes Foundation yesterday.
It is generally not my habit to raise my voice to people even if they’re soliciting money from me, but yesterday, I’d had it. For three weeks they’d been calling two-to-three times a day, with a sneaky caller ID name that my husband was able through the wonders of the Internet to smoke out, and I’d ignored every ringing interruption until yesterday. I was expecting my mom to call me back after a faulty connection, so I didn’t look at the phone when I answered it, and got diabetes man instead of the woman who gave birth to me. I started off politely, informing him that I have two children on the autism spectrum, and all of our surplus funds are directed toward autism research, and I wished him luck with his endeavors. Before I could hang up, he interjected in what I decided was a “snotty” tone that he didn’t require our money. He just needed me to write fourteen letters to people and ask them for their money.
I should have taken a deep breath, counted to ten, or summoned my Clooney place, but I didn’t. Instead, after I finished wondering why I had to write exactly fourteen letters, I yelled at the man who was probably volunteering his precious time for a worthy cause. I told him I didn’t have time to go to the bathroom these days, much less write letters to anybody, and if I did, I’d be asking them for autism funding. I told him he should be phone-stalking families without disabled children, and to please take us off their calling list. Then I hung up. I’m not proud of my behavior.
I’ve also recently taken the Lord’s name in vain when my round the corner neighbor decided it was kosher to let her three bear-dogs run unleashed to her car, cornering me against the bumper of an old Volvo as I tried not to wet myself. My final recent act in my trilogy of rage was when I screamed at a teenager who almost rear-ended me at a stoplight, her attention diverted by her lap, from which I’m certain she was texting some fabulous boy. For that one I waited for the light to turn green, rolled down my window, pointed at her and screamed “Stop texting, you almost hit us, my child is in the car. MY CHILD!”. I held up at least a dozen cars for about ten seconds, a lifetime at a traffic light. I watched her face crumple and her companion slump into her seat, and I was glad. Of that incident, I am proud.
By the way, not a single car beeped at me to move. Not one.
I used to be a much nicer person, a kinder, gentler soul. I am the first-born daughter and oldest grandchild on either side of my family tree, and as such, I inherently felt it was my duty to be responsible and follow any rules imposed upon me. The first third of my childhood I was enveloped in affection, as we lived with one set of grandparents, plus an aunt and an uncle, and saw the other side of the family at least two-or-three times a month. I held the throne of only grandchild for four years, and was spoiled relentlessly in my singular monarchy. Due to the vast quantities of unconditional love I experienced as a youth I had a fairly well-developed sense of self, an attitude that would carry me through the garden variety tough times that every school child experiences sooner or later. I remember complaining once to my grandma about a mean girl (there is always, eventually, a mean girl), and she responded that instead of thinking of myself I should feel pity for her, because clearly her daddy didn’t love her enough, and she was just trying to get attention any way she could. The explanation didn’t make much sense to me at the time, but now, as I see everything through the lens of a behaviorist, it makes perfect sense to me.
My grandma was an elementary school teacher. Apparently you don’t require a psych degree to discern motivation.
So for the longest time I didn’t really feel rage if things didn’t go well in my life, if a boy thing didn’t work out, or a job fell through, or my favorite American Idol contestant got voted off too soon for picking a song his granny really liked instead of singing the tune that was actually appropriate. I handled things. I worked them through. I was a nice girl.
I guess my capacity for rage began when my husband and I began fighting the fertility wars. I clearly remember being enraged that idiots all around us were procreating, leaving kids in oven-like cars overnight, abandoning them, putting them on that TV show where the kids ran the town (remember that train wreck of a show?), and we couldn’t even muster up one tiny baby. We weren’t ancient, were decent people, and were probably the only couple our age in America who had never done drugs (on my part it wasn’t about being noble, I was simply convinced I’d take one toke of pot and be hooked on crack by week’s end). I can clearly remember most of my anger was fueled by one single thought. This isn’t fair.
This concept of fair followed me after the diagnosis of autism of my own firstborn child, was the underlying thread that fueled my anger in those initial days. I’d followed all the rules, both written and unwritten, in order to gestate him healthily during his nine month hiatus in my womb. I’d attended the classes, breastfed even though it was torture (in medieval times if I hadn’t been of a noble class and able to hire a wet-nurse, my kids would have starved to death). My husband was a good man, paid our taxes, even did his own laundry. We were nice people. We would be good parents. It wasn’t fair.
By the time our youngest child was diagnosed (which you’d think would be easier the second time around – it wasn’t), I was still clinging tenaciously to the concept of fair. I still didn’t get it. I wrapped myself in rage, railing that if there’s anything to past lives theory I must have been Hitler AND Mussolini all rolled into one to have incurred such universal wrath. At least in our version of autism, initially my children suffered, and suffered greatly, physically, developmentally, and emotionally. They were good boys. Again, it just wasn’t fair.
Then one day I had one of those realizations, those fleeting “aha” moments that grace our presence all too infrequently. Nothing precipitated it, no cosmic event, no phenomenal quote from an enlightened author. Oprah didn’t tell me to feel this way. It just happened. I realized that my rage, my wrath, the anger that energized me to fight for my kids, to stand up for their rights in school and in the community, was actually a good thing. My idea that things had to be fair, my hope that they would be, was not. “Fair” was tangled up in the rage, preventing it from doing its work, running its course, and eventually being discarded. Holding onto “fair” was preventing me, if even for a moment, to focus on what needed to be done for my boys, from tweaking an IEP to teaching my son to use the potty. Rage can be channeled, employed for a greater good. Searching for “fair” is a useless endeavor, counterproductive to progress. “Fair” was slowing me down. I had to let it go.
It’s a hard habit to break, but I try every day to remember that there are families across this continent, with or without disabled kids, who would kill to have what I have. There is, in almost every case, someone who endures a tougher situation. I attempt to recall this when I am most frustrated, and will particularly have to channel this outlook if that rogue satellite screws up the final “Lost” transmission and I’m forced to watch it on my computer. There will be an extra glass of wine in that scenario, and I’ll just have to repeat my own self-made mantra.
There is no fair. There’s just what is.
May 17, 2010
“Build a sand castle, mommy!”
Five simple words, uttered in perfect sequence. If someone had told me eighteen months ago that my second son, who had surrendered to regressive autism, would regale me with this declarative, this unmitigated demand, I wouldn’t have believed it. You see, I had squandered the majority of my hope on my first child after he too was deemed autistic, and my protective instincts would not permit me to solicit from the remnants of my well-spring of hope any longer.
Yet, here we are, my final progeny and me, sifting through sand and surf, kneading through shells fragments and driftwood, anything that would constitute the necessary components for the sturdy base of a hearty sand castle. Zachary takes this activity very seriously, considering carefully the placement of each turret and tunnel, the precise combination of sand and sea water in every waiting pail. He squats solidly next to me, intensely focused on his next move, bringing the same degree of concentration to this task that he brings to all of his various creations. There is no frivolity for Zach when it comes to construction.
I am deeply content as I regard his choices, his struggles and successes with his palace of mica. Of all places on earth I am most at home here on the Jersey shore, most settled in my soul. I have a connection to the place that extends back to infancy, when my grandparents rented a tiny cottage in Avalon for a month every summer so their land-locked baby granddaughter could experience the beach and its myriad pleasures for herself. The connection deepened when we moved to a small town in close proximity to the shore, where I resided for the lion’s share of my childhood. The beach became my favored companion, through the ache of my parents’ divorce, the ebb and flow of friendships come and gone, boys loved and lost, and sometimes loved again. The sea was my constant haven to recharge, my muse. I cannot imagine not having had it as backdrop to my childhood. It is entrenched, irrevocably intertwined, in so many of my formative experiences.
I have also become aware of other connections more recently in my life, since autism became a permanent guest in our household. So many theories abound about its causes; is it a purely genetic disorder, is it purely environmental, or is it a combination of the two. I have heard autism discussed most widely as an imperfect connection of neural interplay, a disconnect between the regions of the brain and their appointed neurons. Perhaps at some point those tiny, fragile fibers frayed and severed in both of my sons’ corpus collosums, maybe in infancy, perhaps while still residing in my womb. I once read that their wiring is faulty, and I remember being overcome by despair at discovering those words. Everything in life is about connections, whether they’re face-to-face, on the phone, or conducted somewhere in the blogosphere. I recall wondering how my children could survive in a world where they hadn’t correctly connected to themselves.
When we moved back to New Jersey from our adopted state of Virginia four years ago it was with some eagerness to be reunited with family, coupled with great sadness at shedding the ties to friends who became our family, as well as abandoning careers begun and nurtured. In a way, we also felt we had formally relinquished our youth when we crossed the Mason-Dixon Line. My solace was that while DC had afforded us many pleasant memories involving the Potomac, this great river had never met the majesty of the Atlantic. Perhaps now my child, and future children, would revel in its mysteries as I once had. This comforting thought tempered my reluctance to leave, my regret at disconnecting from a place where I had met my husband, conceived my child, and enjoyed predominantly uncomplicated and untroubled days.
My oldest son responded well to the siren song of the ocean initially, and to an extent still does today. I admit that our visits are never quite peaceful to me, as worrying about his safety comes as companion to the shifting tides and sea-slick air. He darts fearlessly in and out of the waves, and quickly tires of the experience, and of resting on a blanket as well. There are only so many perseverative toys one can risk being ruined by grains of sand, and within the hour, Justin is generally ready for other more rewarding pursuits.
He is my sea-song boy, plopping for hours on his Nemo blanket, content with the scoop and pour of his bulldozers’ snouts, happy to bury his mommy’s feet until I beg for mercy. He unerringly discovers the most fetching teen-age girls on whom to bestow his charms, confidently informing all within hearing distance of his age, his name, and sometimes, even his likes and dislikes. Zach will also sit companionably with me at water’s edge, inspect the ebb and flow, warp and weft of foamy tentacles that threaten to submerge his unwilling toes. He responds to this place and engages in activities I once esteemed as a young girl, and hoped to introduce to my own children one day.
We are connected by that invisible thread that links me to my most treasured past, and my hopes for his future. Once again, my trusted friend has come through, as Zach and I share this love, this bond with the ocean, together. And it is this moment of connection, these settings where we transcend the confines of autism, that resonate and fulfill me most of all.
May 14, 2010
My son will soon turn seven. He will be one-third of the way through his childhood thanks to IDEA, a federal mandate which enables Justin to be educated in the public schools until his twenty-first birthday. It is difficult for me to believe, as we conduct the multiple celebrations which herald any birthday in the McCafferty household, that technically one-third of my parenting him as a child has passed. It feels like just yesterday I carried him, painfully post C-section, up the unforgiving brick stairs to our humble Virginia abode, where I recall I stepped over the threshold and immediately wished he had a manual to accompany him. One third over and done, no returning to rectify past mistakes, only moving onward to further challenges, and successes. It’s been both endless, and the blink of an eye these past seven years, to be his mother.
During his early years I felt my life was conscripted into thirds as well. One third of my existence was devoted to child care, that endless round of meals, laundry, cleaning, and removal of bodily fluids that accompanies the raising of any child, disabled or not. The second third of my time I spent in research, endlessly analyzing yet another website, article or book with helpful hints to alleviate the more dramatic symptoms of the manifestations of my son’s autism, namely his inability to speak, his giftedness at spinning, and his seemingly permanent stomach afflictions. The last third of my time I endeavored to spend conducting therapy with Justin, six hours a day, most days of the week, trying relentlessly to solicit the slightest reproduction of sound, encourage the tiniest attempt at imitation, or entice the briefest moment of happiness. His happiness, not mine.
For months after his diagnosis I banished happiness, at least the pursuit of my own. It somehow seemed wrong to covet it, those halcyon days prior to the knowledge there was indeed, something incontrovertibly, irrevocably, wrong with my miracle baby. It wasn’t that I felt guilty he was autistic. Short of ingesting crack cocaine while I was hosting him, nobody could ever make me feel guilty for passing on a genetic disorder, with or without the possibility of environmental triggers.
No, my need to preclude happiness from my own life stemmed from the fact that my child suffered, day in, day out, with gastroenterological symptoms, frustration at his inability to communicate, and the onslaught of sensory overload that assailed him constantly, every second of his conscious moments. Quite honestly, my moratorium on euphoria wasn’t just that he was my son, I loved him, and he was in pain, either. I suppose I felt his suffering more strongly because he reminded me of myself as a child, with his love of books, sand and surf, and when his parents allowed it, chocolate. He was my best self, with the addition of autism. Underneath the many layers of discontent was a child who yearned for constant affection, and a deep connection to those he trusted. He, like me prior to turning thirty, desired to please those he loved. He wanted to be a good boy. And those qualities we shared, in addition to our own inviolable connection, made what had happened to him so much more painful for me to deal with, to understand, and to accept.
I didn’t think it was fair, back when I still believed in the concept of fair, that I should allow myself to mentally escape for one minute from what he was forever immersed in within his world. But as the months wore on after his diagnosis and we approached his second birthday, my embargo on pleasure began to wear thin. As May barreled nearer and nearer to us, I wondered how his father and I could ever enjoy the event, much less celebrate it with friends and family when I personally was still in mourning. I finally realized I’d better take a day off from grief, or I would go crazy. Jeff’s and my birthdays had passed in a blur, I couldn’t even remember how we had commemorated them, and they had just recently concluded. I reminded myself this was Justin’s day (or rather, his month, as that’s how long birthdays are experienced in our family), and he shouldn’t be gypped because his parents were still reeling.
And so, within the confines of childcare, research, and therapy I permitted myself the possibility of happiness, even if only in preparation for one day. I went a little overboard on party planning (Elmo cake, cupcakes, and party favors galore, and I would have forced Jeff to dress up as the red furry friend if a costume existed for a 6’4” Elmo.) Slowly, over the course of a few weeks, my life expanded into quarters, with the added promise of diversion from grief and drudgery, repetition and questioning becoming a permanent staple in my repertoire.
I have read numerous essays by parents who lament their disabled childrens’ birthdays, and I understand completely what lies behind the sadness. Those days are supposed to be a celebration of milestones achieved and surpassed, joy and discovery, love recognized and rewarded. Often, at least when autism is a party guest, there is only agita, fear, and the cleaving away of the last vestiges of “normal” that every family hopes for at least one day of the year. Sometimes, despite the best preparation, these holidays are just painful reminders of what should have been, and perhaps what will never be.
I have decided however, that no matter what is transpiring in our everyday lives, whether it’s potty training issues, sleeplessness (Justin’s or mine), or simply the myriad annoyances of having an autistic child, that this one day – the day I, his father, and nine months of highly skilled ob/gyns and fertility doctors, brought him into the world – will be sacred. We will celebrate, and we will celebrate well. I now make time every spring to recall past birthdays, to note his accomplishments, to appreciate his own passage to happy. I remember how he mastered his first sign, “music”, and used it to persuade his parents to replay his favorite Wiggles tune over, and over, and over again at his second birthday fete. I recall how on his third he finally overcame his squeamishness and dove both hands into a corner of his Winnie-the-Pooh cake, gleefully freeing fistfuls of chocolate and butter cream in his triumph. In my mind’s eye I particularly revisit his fifth celebration, for as we came home from our mid-day outing he recognized the streamers and decorations as a portent of what was to come, and I realized he finally understood, at least in part, that this was a day about him.
I welcome his birthday now, as a reminder to enjoy him for who he is, not to dwell in who he could have been, and what my life would have been without autism firmly entrenched into my family’s existence. I strive constantly for more days like this, where my life is not constricted by fractions, where happiness permeates all the disparate denominators of my days.
I also know, on this birthday as in all birthdays past, when those who love him gather to make our collective wish for his well-being and extinguish the flames of seven dripping candles, my boy will reach for my hand as we sing his song to him. And that, to me, is happiness.
May 11, 2010
It’s my fourteenth wedding anniversary today, so being the phenomenal wife that I am I began searching exactly five days in advance for the perfect present for my spouse. Just for fun I had to investigate what the traditional gift would be (it’s ivory, now no longer recommended because of that whole “endangered elephant” thing, although ironically the proposed travel destination remains as Africa), which gave me absolutely no resolution whatsoever. I cheated and looked up the anniversaries before and after, and while completely at peace with missing out on textiles last year, I admit I am wistful at the proposed jaunts to France and Switzerland respectively (if there’s anything to that past lives theory, I most definitely spent a good portion of mine in Europe, drinking wassail and eating whatever chocolate I could get my preferably noble hands upon.)
Jeff and I however will remain local, and most likely will celebrate the blessed event at Chevy’s. There the margaritas flow freely, and we will probably employ a coupon for the guacamole app I will pretend he’ll share with me, and that I will instead consume entirely on my own. Our wedding remembrance day will be the culmination of four events in one week, namely that of Teacher Appreciation, my son’s multiple birthday fetes, Mother’s Day (still a high holy day in my family, just not necessarily geared toward this particular mom), and of course, our fourteenth wedding anniversary. So much giving, and sadly, most of it to people other than myself. I will be exhausted.
With tremendous effort however I will rally, and engage in a tradition I always make time for annually, the once-a-year extraction of my wedding albums which are tightly sequestered between the three albums I have of my pre-child existence, and the thirty I’ve created since the birth of my first son. I enjoy remembering that day, as well as the engagement year leading up to it and the fabulous honeymoon that followed. Every time I crack those leather-bound and embarrassingly dusty tomes I search the face of that twenty-something girl, remembering how innocent she was, how completely unprepared she was for the rites and rituals of marriage, of parenthood. I harbor a deep tenderness toward her, and am glad she didn’t know what was coming down the road. Given who I was then, I’m not sure she would have left the dressing room and descended the long, windy staircase to her groom and the pre-wedding photo shoot that would enable her to partake more fully in the upcoming cocktail hour.
If I could travel back in time, hold her hand, and divulge to my younger self what was in store for her (if she’d let me), I’d tell her this. That her extremely ambitious goals of marrying a good man she could trust, one she liked to kiss and who made her laugh (which by the way were the same requirements I had for all of my boyfriends, which perhaps doesn’t say much about my expectations in general), would come to fruition. That this man (and at least with the first child, a posse of highly trained fertility specialists), would eventually give her the two children she so craved and longed to hold. I would tell her they’d be boys, that she’d get over the whole “I’ll never have a daughter” thing, and would eventually be grateful for the plethora of testosterone so rampant in her household. I would share with her that one of her worst fears would come true, that there would be something wrong with her babies, something that made them suffer, and that even with her indomitable will she wouldn’t be able to “fix it”. I would also inform her (when she took a pause in her hysterical sobbing) that she and that man she was marrying would work it all out. That eventually, after many long years of struggle, things would turn out okay.
I’d tell her that they’d bond during the infertility years, would take even most of the multiple miscarriages in stride, and would engage in an “us against our reproductive organs” mentality that would bring them even closer. I’d explain to her that long before the first signs of something gone awry would manifest in their baby that parenthood would temporarily rip them apart, that these “later in life parents” would have a difficult time learning what it means to relinquish all vestiges of personal time, but would eventually work through that too. I would instruct her that the awareness, the irrevocable knowledge that something is permanently disconnected in their firstborn son would initially cause a rift between them once again, but through their love for one another and their commitment to their child, that cleft would be healed as well. I would convey to her the first time would be good practice for the second, and that they’d cycle through the stages of grief faster with their last son, would be able to support one another sooner.
I’d forewarn her that there wouldn’t be a great deal of traditional romantic gestures, few surprises, fewer flowers, reduced tokens of affection. I’d console her with the information that her husband’s love for her would manifest in actions, from the way he cares for her sons in the middle of the night so she can sleep, to doing his own laundry, to conducting his weekly coupon-fueled grocery shopping which greatly increases her free time (I know, now I’m just showing off). I’d inform her that he’d one day read every word she’s ever written in regards to that book she’d one day pen about her experiences with her sons, and that their marriage would survive his instruction for her tenuous acquisition of the technological savvy required to operate her blog. I’d reassure her that she would find these activities far sexier than any flora or fauna he could bestow upon her.
I’d hug her, and when she stopped sniffling I’d look her in the eyes and tell her marriage was work. It would never be perfect. There would be fights, and no matter what they were superficially about, they would somehow always be about the same underlying issue. Every marriage has at least one.
But I’d also reassure her that her initial desires would come true. He would remain a good man. After knowing him for almost twenty years, she would still like to kiss him. And perhaps for her, most importantly, no matter what, he’d continue to make her laugh.
Then I’d wipe her raccoon eyes, reapply her mascara, and tell her to get downstairs so most of the wedding photos could be shot, and she could eventually partake wholeheartedly of the free bar and pigs in a blanket her soon-to-be groom fought so vociferously to include in the cocktail hour menu. If I knew her at all, she’d rise, take a deep breath, palm a couple of the Hershey’s kisses so conveniently available on her dressing table, and descend to her destiny.
And despite everything, from the aggravating minutiae of marriage to the soul-sucking events of parenthood, she’d find her older, but perhaps not wiser self, to be honest in her disclosures. Things really would work out. They would be happy. She would be happy.
There would be, for all of her loves, a good life.