May 18, 2011
Even at the tender age of eight, my son Justin has somehow managed to acquire several paramours during his short stint on earth. First, there’s the love of his life who lives around the corner, a girl for whom he would do anything. This dedication includes shoving me out of the room whenever she arrives to play with him (in a painful, bruise-in-the-small-of-the-back-kind-of-way, it’s a proud moment every single time). On a local beachside playground there was a lovely teenaged girl we continually encountered on summer afternoons, a love interest with whom Justin shared his toys, and his kisses. There have been mild flirtations along the way with the few girls in his classes (that 4:1 boys to girls ratio for autism has not been in his favor), including a young blond thing in pre-school for whom he tried to escape his classroom whenever he caught sight of her. Let’s just say, his one-on-one aide was in great shape that year.
And then, there was Kerry.
I’ve written about Someone Special Needs You (SSNY) several times since I’ve begun this blog, not because I’ve run out of things to talk about (trust me, with autism, you never run out of things to talk about), but because it’s carved out such a unique place within Justin’s lexicon of activities, and within my heart. It’s a group which convenes eight times a year in a church in Colts Neck, NJ (nope, it’s not religious in its origins), and includes neurotypical teen-age peers and children with a range of disabilities as well. Sometimes there’s a theme, such as Christmas/Chanukah or St. Patrick’s Day. On occasion the group’s founder, Vince Scanelli, hosts a full-fledge carnival, or a graveyard Easter Egg hunt. There’s always a craft and an abundance of snacks, which Justin usually consumes as if he’s eating for three. For the most part my eldest only deigns to share his company with the group for about half an hour, but I know on some level, he enjoys his participation.
But the best part for him, hands down, has been his buddies.
Justin has never been a patron of the arts-and-crafts, and I’m pretty certain even the allure of unlimited potato chips wouldn’t convince him to get out of the car at 6:30 at night, at the end of a long week at school. No, the single most motivating factor to inspire Justin to do something other than handle toys that light up and spin, has always been women. This is a trait he seems to have inherited from both sides of his family, with the sponsors being his father and maternal great-grandfather, respectively. My son loves being fawned over (as on occasion, have said father and great-grandfather), and for at least a limited time, will do absolutely anything for a pretty, smart, kind girl who’s been his friend for four consecutive years (that includes painting a damn leprechaun).
And since he was four years old, for most of the time he’s participated in this group, Kerry has played the role of primary reinforcer.
Justin’s fabulous buddy is a senior in high school, and although I’ve had almost half a decade to prepare for her departure (come on girl, what about online learning, it’s the wave of the future), I was still unaware that our April get-together would probably be the last event my son would be able to spend time with her. I thought we had one more gig in May, during which I would have actually remembered to bring my camera and at least presented Kerry with some photos to remember Justin by, but I was informed early in the event that our sojourn to the gymnasium that evening would be our last until September.
Once I saw that Kerry had made it, and that Justin would get to say goodbye to her, I rallied (never let it be said I’m not a rock of a woman). I left the two of them to their own devices, and helped my husband keep Zachary alive, which given the height of some of the equipment and my youngest son’s refusal to fear anything, was no easy task. I admit, I was easily able to put Kerry’s imminent departure out of my mind in an effort to ascertain exactly how many exits Zach could escape from in each bouncy unit (generally, there were no less than three, Jeff and I were outnumbered).
Eventually, after an hour of gut-queasy bouncing and multiple room changes, the evening concluded. I asked our soon-to-be-former buddy to escort Justin to the car so he, and I, could say a proper farewell to her. Jeff and I successfully strapped two hyper, over-tired young children into our SUV, I counted the twelve bags that comprise our entourage wherever we go, shoved them in the trunk, and asked Kerry to lean in and hug Justin. She did as asked, extending a full-body embrace and a kiss on the head to my boy, then she turned back to me to say goodbye and hug me too.
I opened my arms, got out “thank you for everything”, and totally lost it on the shoulders of an eighteen-year-old girl.
In my defense, just prior to completing that circle of love, Kerry shared with me that she would be studying to be a speech therapist in part because of Justin, and frankly, I’m not certain how I could have contained myself after that declaration. As I’ve mentioned before, I’ve managed lately to relegate most weeping episodes to television and film, the finale of Lost and my husband’s cruel sharing of the end of Toy Story Three coming to mind. I just don’t find crying all that cathartic anymore, what with the raccoon eyes that follow with the accompanying migraine chaser from hell, so I’ve channeled my desire for release into other outlets.
No, not drugs. Reality television and the blog, people, the blog.
I immediately apologized for sobbing all over her pretty Gap t-shirt, and managed to state without a full-fledged gulp accompaniment how much her participation in the program had meant to Justin, and to me. I thanked her for her commitment to him, how she showed up during flu season and finals, in inclement weather and sunny skies. I informed her she would be an inspirational speech therapist, and that I was proud my son had influenced her decision, even if only in some small way.
I shared with her that one of the most difficult things for me to accept about the nature of my son’s disorder was that in the truest sense of the word he doesn’t have friends, is bereft of the companionship that has sustained me through some of the most difficult periods of my life, as well as provided me with some of the most hilarious moments as well. I told her that in her own way she had been Justin’s companion for the better part of four years, and that filling this gaping niche in his life had played an instrumental part in his social growth, while simultaneously filling an aching need for myself as well.
Then I took a deep breath, sniffled one last time, and managed to let her go.
After making her promise to keep in touch I slid behind the wheel of my car, accepted the proffered tissue from my somewhat confused spouse, and carefully began backing out of my microscopic parking spot. Jeff asked me if I was okay, which unleashed a second wave of weeping, as I tried to explain to him what this girl had meant to our son and me, and failed miserably (it’s hard to talk when you’re hiccupping). Eventually I got a grip, engaged my GPS so I could find my way home and not rely on my husband’s incredulous instructions (the fact that we were simply retracing our previous steps means less than nothing to my direction-addled brain), and headed for home.
I glanced back at my boy, strapped carefully into his fortress of a car restraint, rocking out to Stevie Nicks and blissfully unaware that this hug heralded the end of an era. I sent a silent plea to the universe I wouldn’t have to witness him searching for her at SSNY in September, then eased into traffic on the main thoroughfare. I filled my lungs deeply one last time, searching for solace in the comfort of air, and in that moment, finding none.
And this time, I let that be okay.
September 9, 2010
It was all because of a tiny, innocuous zero, a place holder, a value representing nothing. Our wonderful private speech therapist forgot to scribe two zeros after the decimal on our weekly receipt, and when my husband submitted our claim to insurance, it was flagged. Apparently the numbers inscribed to the left of the decimal when accompanied by one sole zero to the right indicate a visit to the ear, nose, and throat specialist (until recently the one medical practitioner we’ve managed to avoid all of these years). While our speech therapist is quite erudite she did not attend medical school, hence my husband had to spend close to an hour explaining the situation to a representative from Blue Cross Blue Shield.
Fortunately this error had been replicated in the past, and eventually the correct diagnosis code was sorted out, the claim processed correctly. Since we only receive five free weekly visits a year I’m not quite certain it was worth my husband’s valuable time, but he assures me the conversation was necessary. I have the patience of a two-year-old when it comes to insurance claims, so I will remain eternally grateful he chose to take the bullet on this one. I am not a fan of paperwork.
It occurred to me as we concluded our discussion and he headed back to his office that life for this family now seems to gravitate toward this encounter with the hundredths place, that having two autistic children for the most part seems more like an aggravating situation rather than the devastating, overwhelming tragedy it appeared to be only a few short years ago. We are no longer plagued by daily tantrums from our oldest son, have relinquished dodging his fingernails as he’d try to pinch his way to getting his needs met, his frustrations realized. I am spared witnessing the slow, horrifying descent into silence of my youngest child, through with longing to see his core self replace the almost mute, miserable, perseverative boy that autism temporarily left behind in its wake. We all (generally) sleep through the night now, engage frequently in some semblance of a family outing, receive positive reports from the excellent staff at my sons’ respective schools. They are, for the most part, happy boys, eager to greet the day each morning, reluctant to leave us in the evening for what their parents hope will be a good night’s sleep. It’s not the Cleavers here, but it’s not the Gosselins either. Believe me, I’m grateful.
I am relieved we have finally arrived at a place where daily life is not so eternally dire. It’s taken me a long time to get to this locale, but I realized for the past two years I have been in a way holding my breath, searching for the bright side. Perhaps I have been bargaining with myself or whatever higher power exists out there that if Justin would stop being aggressive, and Zachary would resume talking, that I would cease complaining about the ancillary conditions of autism, the sand-in-your-eye, paper-cut aspects that seem to perpetually exist in our world. For the longest time I’ve held them all in, the minor and major irritations that pervade our family life, that insert themselves into every corner of our existence.
Now that we’ve finally transcended the darkest place with both of our children, an environ which I hope we are fortunate enough never to visit again, I feel ready to conquer my next battle. Trust me, it will be a Herculean effort by any account, but it’s now time for me to learn relinquish the smaller, yet still significantly soul-sucking irritations. Here I go:
- Despite having successfully run classrooms of thirty-five pre-adolescents, I cannot safely manage having both of my children alone with me in public. This is not limited to, but includes, my own backyard.
- My oldest son recently figured out how to escape from his car seat, navigating his way on one occasion into the trunk of my car as I bypassed several police cruisers on the scene of an accident. As a result of this gymnastic feat, when a passenger in my SUV he is now permanently encased in what I lovingly refer to as “our family strait-jacket”.
- With both of my sons enrolled in special education programs, they have a collective entourage of over thirty people to thank with end-of-year gifts. Every year my husband forgets this. Every year we fight about it. The bright side is we’ve finally streamlined the entire experience to fifteen minutes.
- We’ve basically eradicated the aggression in my oldest child, which precluded us from taking a number of trips and outings in the past. He has now decided however he will only remain outside of our home in any location for exactly thirty-seven minutes. Yes, I’ve timed it.
- When I go to Great Adventure I have to wear my “old-lady shorts” into the park while I smuggle in GF/CF snacks, because there is literally not one food item in the entire park that does not contain gluten or casein within it. Trust me, I’ve heckled the food service workers. There’s not one.
- My oldest son can’t tell me when he’s ill. Every single time I have to figure out, with my completely unhelpful general education background, if he’s simply in a foul mood, or really sick. For the most part, I suck at playing doctor.
- Despite living in a state where parents took the time to badger our government long enough to force several insurance companies to finally start covering some of the necessary core services of autism, we cannot partake of the bounty because my husband’s insurance coverage originates in Virginia.
There’s more (there’s always more with any child), but that’s enough for today. I’m learning to let go, and perhaps, more importantly, telling myself I don’t have to experience guilt about feeling irritated over what autism brings into our lives, even if the event doesn’t entail drama worthy of a failing tv show during sweeps. It’s okay for me to get mad. It’s okay for me to express that. It’s better for me to let it go.
To everyone out there trying to do the same, no matter what the context, here’s to purging.
June 9, 2010
My oldest son is now seven. He has never spoken a completely intelligible word.
There have been approximations, attempts at articulation that his father, mother, speech therapists, and sometimes his little brother have understood. “Mmm” for mama, “heb” for help, “ob” for open have all graced our presence, particularly in the last six months. His apraxia, the disconnect between his brain and the muscles required for speech, is strong with him. But for the first time in his life I am watching him strain for vocalizations, feel his fingers on my mouth and his eyes on my face as he struggles to imitate on demand, but never to initiate on his own. It is both thrilling and heartbreaking to see him try, to comprehend that he actually wants to talk now, but perhaps will never be able to coerce the sounds he makes into the cohesive whole of an entire word. I imagine he is frustrated by this inability to converse. I am not even certain of that.
Justin was diagnosed with pervasive developmental disorder at the tender age of seventeen months, which was particularly early back in 2004. His father, grandmother, therapists and I quickly immersed him in sign language in order to offer him a way to get his needs met without a tantrum, and to afford him the opportunity to more fully connect with the world. We utilized this approach for the better part of a year, contriving hundreds of trials daily in which we cajoled him into asking for a preferred toy, food item, or book to be read. Sign language was his chosen methodology of communication for well over a year, but despite his obvious intelligence, after fifteen months he had really only mastered half a dozen signs.
When we moved to New Jersey we were fortunate enough to receive the services of the Douglass Developmental Disabilities Center, and the excellent practitioners of my newly formed “team Justin” quickly indicated that sign wasn’t working for my son. They believed we should try PECS, a method of language using pictures that is far more visual in its interpretation, and without the prerequisite of good motor imitation skills integral for success in sign. I initially rejected the suggestion, because studies at the time had indicated that more children who signed progressed into vocal speech than children who employed other methodologies of communication. I resisted heartily, and almost made a terrible mistake because I forgot to utilize one of my strengths- to look at the big picture through the lens of an educator, not a mother.
For years in the classroom my co-workers and I had encouraged different modalities of learning, whether the child came with an IEP or a 504 plan, or just required a diverse way in which to acquire knowledge. It was not unusual for teachers at my school to encourage a student to memorize information for a test in the form of a song, to permit them to walk around the classroom to facilitate knowledge acquisition, or even to allow them to respond orally to a quiz if the written word was too daunting to them. We weren’t heroes. It was just part of our job.
I forgot this big picture approach with Justin for a time, because I was too emotionally invested in what I wanted for him, which was the ability to form the spoken word, to convey thoughts, desires, and initiate conversation. I almost forgot to take into account his strengths, which were technology and visual acuity, and acknowledge his weaknesses, imitation and gross motor coordination, both prerequisites for sign language. I also almost forgot that just because I want him to talk, doesn’t mean he will be able to do so. I can provide every opportunity for him, entrench him in multiple chances daily for understandable utterances, but in the end, whether or not he speaks is up to his ability and his motivation, as are so many other skills I’d like him to attain. I forgot this cardinal rule of teaching, and almost squandered the opportunity for even the most rudimentary communication skills for my son.
Justin soon mastered the PECS program and has since moved on to a more complicated augmentative device, the Springboard, which he uses in conjunction with attempted vocalizations both to request desired items, and to respond in academic situations. He is starting to type simple words on the computer now, employing a simpler version of the “hunt and peck” technique my husband still utilizes to this day. Justin has a typing repertoire of almost twenty words now, with new ones in acquisition daily. It is exciting to watch, and thrilling to witness his pride when the printer spits out his accomplishments so that he has tangible contact with his words.
I temper this success however, as I do his some of his other accomplishments, because I must remind myself that language and communication are two different entities, and the former does not necessarily blossom into actual conversation. It took a long time for me to understand that just because my autistic child was bright and might someday have language, he might not have communication. There are a number of children on the spectrum who are pros at scripted monologues, veritable geniuses at enumerating the myriad characters of Disneyworld, the Island of Sodor, or the Wiggles. They have vocabulary, excellent articulation, perfect diction. They speak. They are not communicating in any utilitarian fashion.
I remind myself of this as I watch him struggle, view his attempts to place his tongue in the correct position for a coveted consonant, or elongate his lips for an elusive vowel. I encourage myself to think “out of the box” about language in general, because this particular child may just not need to connect with people the way that his mother does. His rudimentary successes may lead to more meaningful dialogue one day, or they may not.
What matters most is that he does get his needs met, and no longer feels it necessary to cry, pinch, or stomp his requirements to get them realized. He connects. He is happy. And while I know I will always wish for the trappings of conventional speech, even the mere desire of it from him, perhaps in the end we convey more to one another in our increasingly elongated eye contact than we ever would have with the spoken word.
And I can live with that.