November 9, 2012
We Will Rise
It’s the eighth day after the storm. We remain dark, but still I see the light.
Both of my boys, my beautiful children, have autism. One struggles to make himself understood, and both have an almost religious adherence to routine. Despite their collective need for structure, my offspring have been absolutely amazing during Sandy. My eldest, who is severely affected, has lost it only once. Ironically, it was last Monday at the height of the storm, where he picked up his shoes and dragged me to the door, regarding me with plaintive eyes and emitting cries begging me to leave. That, miraculously, was the most drama we had all week.
I am well aware that not all families in New Jersey with or without differently-abled kids fared so well. When we got out of our internet-barren house last Tuesday, I saw the pictures. I viewed entire towns razed by wind and sea. Eventually I came to that now iconic photo of a roller coaster’s remains, the very one that terrified me for years, and enthralled my eldest son.
I had to stop looking.
Some of the stories from the storm’s havoc have been heartbreaking. Sea Bright, the beach where I spent my youth, destroyed. Mantoloking, where no home was spared at least some structural damage, its bridge bay-submerged, devastated. Some homes on Long Beach Island, where my family once had a summer cottage, swept out to sea while still inhabited as Sandy exercised her wrath.
Residents of towns all up and down the Jersey shore and some throughout the state are displaced from their possessions, their pets, or the skeletal structure of what’s left of their residences. They are the newly homeless, isolated and dispossessed, relying completely upon others for news of their houses or loved ones. Staying at shelters, or if lucky, with friends or relatives, theirs is now a profound disconnect to the world.
The wreckage is unfathomable.
And yet, during this week, when I’ve held my phone up to the kitchen window to access my two minutes on Facebook, I see that offers of assistance, safe lodging, or simply of solace, abound. This social network becomes the place where we receive our news, and it is filled with status updates offering showers, food, or simply a warm living room floor upon which to rest. I witness people searching valiantly for rental homes for complete strangers. I watch as others lend helping hands to those with whom they’ve had contentious relationships in the past, old wounds buried, differences rendered catastrophe- irrelevant. We will match those in need with those who can lend a helping hand. We will come to each others’ aid, politics and viewpoints be damned.
We are Jersey strong. We will re-connect.
There are of course the more personal stories, the tales of the individual lives of family and friends. A neighbor’s mom whose first floor is flooded ceiling high, rendering her home uninhabitable. Another neighbor’s parent evacuated in chest-high water with rope and a prayer through freezing tides, barely purchasing higher ground in time. Rumors fly of looting in Bay Head, JCP&L imposters, stolen generators in our town. A family of six with an autistic child searching for shelter. Thousands of families still blessed with a home, who remain in the dark.
And yet, hope reigns. When I have access to the outside world I read about commitments by ten states to help repair our power stations. On one of our escapes to warmth we witness trucks from Virginia, Texas, and Michigan trekking across Route 195, intent on reconstructing cable and connections for our residents. I devour a New York Times article already discussing the regrowth of Jersey’s playgrounds, such as Jenkinson’s in Point Pleasant Beach, where for six years my sons have delighted in sun, sand, and surf. The Garden State will not be defeated.
We are Jersey strong. We will rebuild.
There is a benefit concert in New York that most of Monmouth, Ocean, and many other counties can’t see, a coming together of talent that raises twenty-three million for our beleaguered shores. Plans abound for fundraisers, school by school, business by business, town by town. My own family is offered no less than a dozen sincere offers to stay, ranging from New Jersey and Pennsylvania to as far as Washington, DC. These offers came despite knowing that uprooting Justin would mean perhaps a week of sleepless nights for all, seven days of watching him truly suffer his own particular brand of disconnect. Families with differently-abled kids remain online sharing resources and dispensing advice, or just as important, simply provide an understanding ear. Clearly, we are hurt. Also clearly, we care.
Our communities, all of our wondrously diverse communities, are resilient. We will recover.
We are Jersey strong. We will rise.
January 17, 2012
Respite Repealed
“We’ll make it” I tell myself, even though Justin is thoroughly kvetching and we haven’t even concluded one entire game of bowling. My eldest son has become slightly more agitated as the afternoon has worn on, but thankfully remains mostly compliant. He dutifully takes his ball to the special ramp designed to help him aim, and afterwards embraces me with one of his trademark bear hugs as he waits for the machine to reset his pins.
We’re about to commence the tenth and final frame as he fingers release his round captive, and without warning, the board that whisks the pins away slams down, preventing his ball from concluding its course. Given his post-illness decline in behavior over the past few weeks I expect anger, or at least frustration, but he seems relieved. He knows he can expect a trip to the snack machine now, and as we make our way back to our assigned swivel seats and my wallet, I admit I am relieved too. We seem to be in the home stretch, another outing successfully conducted despite his recent regression.
Then, he sees the french fries.
We’re back in the car, my heart pounding, Justin sobbing relentlessly, my coat askew. I manage to snap the last buckle on his vest restraints as he tries to pinch me again. I thwart his efforts, and as usual, the anger in his eyes recedes. He grabs a hunk of hair on both sides of my head, and drags me down for his signature “sorry” kiss.
Then, I’m sobbing too.
I wipe the tears from his cheek, hand him a juice box, and my boy’s tears subside. After firmly closing his door I open mine, and heave his bag and my purse onto the front passenger seat, because I literally don’t have the energy to walk around to the other side of the car. I allow myself to recall what just happened, to play it out in my mind so I can relinquish this episode to the past.
It’s the smell of fried potatoes that calls his attention, because I’ve maneuvered my body so it blocks his view of her plate, but to no avail. The woman at the table next to us has ordered this carb concoction, and its odor wafts over to us. Justin sees it, and Justin wants it. Not his own plate. Her plate. And he wants it now.
Despite his protestations, I manage to usher his four foot three frame, the length of which now measures up to my collar bones, back to our table. He is fighting me the entire way, wants out of his seat three, four, five, half a dozen times. I switch his shoes, throw on his coat and mine, and somehow grab all of our bags with one hand while holding onto his jacket with the other. We make several aborted attempts to exit the alley. The look in his eye is clear, focused, and devoid of what I know as the essence of my son. He wants that woman’s food..
He is relentless.
Somehow with me practically dragging him we make it out, past the stares of the manager, the families enjoying their time together, the elderly bowlers whom I know are regulars. A few have looks of disgust on their faces. After eight years I’m usually immune to the glares, particularly as they fortunately do not occur often. But today, I want all of the patrons to disappear. I want to disappear.
It crosses my mind that someone might even question my own behavior with my son.
I slide into the driver’s seat, wishing I retained the same measure of control over my child as I soon will with my car. I grab a wad of napkins left over from some local fast-food restaurant and wipe my own face, take a deep breath, and let the “replay” leave my conscious thoughts. There’s still a good six hours left in the day. There may be more skirmishes ahead.
I need to conserve my strength.
I allow myself one more brief moment of reflection as I feel Justin’s foot in the small of my back, his way of indicating to me he wants me to turn on the radio. After four weeks of this on-and-off behavior, I’m not even angry anymore, I’m just sad. I think of all the work we’ve done over the years. The behavior plans with his teachers and specialists. The home program, the outside speech therapy which we are fortunate to be able to provide him. The relentless adherence to ABA protocol that has helped him so much. The medications we’ve agonized over giving him, the same ones that have provided him, and our family, such a long respite from suffering. I think about how along with the moments of joy and the immense progress he’s made, I have to honor his true path and record these moments too, because these periods rear their ugly heads cyclically. They are one truth of my son’s type of autism too.
And they need to be heard.
I turn the ignition key, remind myself that we have a plan. There will be tests conducted over the next month. There will be at least several more visits with two separate specialists. Our family, Justin’s school, and his therapists are taking action. All we can do is continue to love him, and stick to our guns with disciplining his behaviors. Beyond that, all we can do is wait.
And I hate it.
October 23, 2011
Warriors, Tigers, and Dragons
It seems we’ve come to a place in our society where moms require labels to distinguish what kind of parenting we practice. Several years ago I read an article describing how Jenny McCarthy aptly coined the phrase “warrior moms”, a term dedicated to those of us fiercely advocating and fighting for our children with autism. This past year in Time Magazine the zeitgeist shifted to “tiger moms”, an appellation I grasp intellectually, but continue to reject solely on my belief that childhood should include choices, and at times actually be fun. Then last night, as I briefly skimmed through the daily Autism Speaks blog, I chanced upon a reference to a New York Times opinion piece called “Notes from a Dragon Mom”. Without reading the blurb I rolled my eyes and clicked on the link, ready to be regaled with yet another story of a superhuman mother which would surely leave me feeling vaguely guilty for all the things, despite my efforts, I somehow manage not to accomplish for my progeny.
Ten minutes and half a box of Kleenex later, I sent a silent plea to the universe to forgive me for that eye roll.
The piece, by author Emily Napp, describes in exquisite, precise prose how her eighteen-month-old son Ronan, a beautiful little boy with red hair kissed by fire, will not live to see his third birthday. I won’t give you the details here, because Ms. Napp does so brilliantly, with an elegant grace I cannot and should not attempt to reprise. I promise you however, this article is worth your time, and will perhaps alter your perspective on parenting irrevocably.
I know it did for me.
For years after both of my boys were deemed autistic, I was mostly immersed in the physicality of their diagnoses. My husband and I were completely caught up in dealing with sleepless nights, relentless rounds of diarrhea, eating aversions, and with my eldest, the feint and par of aggression. There wasn’t much time to consider the future, as the two of us at times were literally simply trying to make it through the hour. Quite frankly there was a safety to living in the moment, no matter how terrible it was. Having been a veteran educator myself I’d had access to several autistic students over the years, and had been privileged to know and follow their families over time. I had an extremely clear big picture view of what might transpire for my boys down the road, and the prospects were terrifying. I simply shelved those thoughts for the years immediately following what I like to call their “D Days”, and forced myself to focus on the now.
I believe making that shift saved my sanity.
There were times however, particularly during Justin’s pre-school years, that as our daily struggles lessoned, the weight of that possible future would insidiously slip its way back into my head, at times leaving me semi-paralyzed with fear. I realized ironically that as Justin’s challenging behavior lessoned, I would have to ramp up my own self-discipline, try to conquer my own fears, and stop living in my head. I’ve mentioned before in my blog that one of the most helpful tools I used to do so was Susan Senator’s book Making Peace with Autism. Her writing, despite our child’s moderate autism, afforded me both a blueprint for one day achieving a happy family, as well as a second important mental shift.
I clearly remember one fall morning in Barnes and Noble, snatching up this book from amongst a myriad of tomes that outlined the full recovery of the author’s child, and finding immediate comfort from the words within the cover. The solace came not from discovering a family who made every decision regarding their child’s care with consummate perfection. It came from reading about a family who learned to self-correct their errors, who made enough of the right choices despite their son’s severe autism to forge a path which would ultimately make possible what I consider the perfect endgame- a safe place to live, a social outlet, a job, and a happy life.
This remains my intended endgame for Justin as well.
Life continues to improve in our home, with my eldest making great strides in reading, communicating his needs, and finally being able to summon that peaceful child I knew existed, and worked so diligently to unearth, during all the dark years. Despite my second’s son’s identical diagnosis, Zachary’s life trajectory remains quite different than Justin’s, most likely including the more traditional fare of relationships, college, career, and independent living. Over time I’ve been able to reconcile the fact that Justin won’t have these options, mostly because he’s achieved the most important goal I’ve always had for both of my kids.
Both Justin and Zach love their lives.
As we’ve reached this point together as a family I’ve realized I won’t ever completely be at peace with the paths autism has altered for us, but the truth is I am completely at peace with that realization. There is one fear however that has lingered for me, the one that requires a serious “aha” moment, or one last emotional transition. I have yet to figure out how to deal with those decades I won’t be around to protect my boy, although if it were possible from beyond the grave, I surely would. Part of my problem is projection, or the very real fear of all that can go wrong when I’m gone.
Every year since Justin’s diagnosis I’ve come across a heartbreaking story of an adult with autism’s neglect, injury, or untimely death. These stories simply exacerbate my deepest fears, heighten the atmosphere of “what happened now”, in which my family dwelled for so long. The possibility of someone hurting the someday adult who will always remain my baby clouded the future, prevented me from seeing an alternative route. Yet the truth is, Justin may live safely for the forty years he’ll spend on earth without me. He may in fact acquire that job that suits him perfectly, enjoy authentic social opportunities, truly revel in his life. There’s every chance he may be just fine. The reality is, he’s lucky to have a future.
And last night, in devastating detail, Ms. Napp reminded me of that simple truth.
I admit, I feel somewhat guilty gleaning clarity from this piece, seeing how this author must surely dwell, despite the sweetness of living in the now, within the confines of constant, unremitting pain. Her words certainly have not completely eradicated my deepest worries concerning Justin’s existence post-parent, but they’ve given me a different way of contemplating the arc of his life. For that gift, I am eternally grateful.
I am confident I will never have the honor of meeting Ms. Napp to physically thank her for sharing her story. The most I can do is share the piece here. As the author states near the conclusion of the article, the truth for all of us raising the next generation is that “none of it is forever”. I thank Ms. Napp for altering my perspective. And I know, as I hug my boys who have already lived longer than her son probably ever will, I won’t forget this truth any time soon.
September 6, 2011
The “I” of the Storm
Perhaps the hundredth or the thousandth hiccupping sob escapes from Justin’s lips, and I attempt once more to comfort him, but to no avail. We are stretched out together on my friend’s amply cushioned king-sized bed, me attempting to explain to my son that we can’t drive home in a hurricane, he imploring me with his eyes to try anyway. This is our second night in what I’ve come to call “captivity”, and despite having recreated his room as much as humanly possible with drawn shades, white noise, and his own sleeping bag and pillow, my eldest is having nothing to do with my choice of sleeping arrangements. I wipe away his tears once more and he pushes away my hand vehemently, and I take a hint, cover him up once more with his fishy throw, and quietly leave the room.
As I cross the threshold into the lighted hallway I recall how I’d wondered a few weeks ago if Justin’s aborted sleepover at Grandma’s was due to his routine being changed, or that fact that his mother wasn’t in residence with him. I shuffle slowly into the living room, dead on my feet from not having slept much the night before, fingers crossed. I no sooner reclaim my perch on the sofa when I see the blur of my son running past, with pillow and sleeping bag in tow. He clutches his treasures with one hand, and with the other shoves me toward his shoes, utterly indifferent to the pelting rain and strong winds buffeting the house from all sides. I gently redirect him back to the bedroom, and he sobs again in despair as we return once more to do battle. This time I don’t permit him to push me away and he finally relents, allowing me to rub his back and sing to him as his sleep medication finally takes hold, granting him release from his torment. I kiss him gently on the forehead and ease myself off the bed, and after slowly slipping the door back into its frame I once again return to the relative comfort of The Good Wife.
At least I have an answer to my question. He wasn’t missing his mommy at Grandma’s.
The decision to escape Irene with my children came with some trepidation, particularly as it seemed prudent to leave my husband here to hold down the fort, which meant I’d be traveling solo with the boys. Jeff and I went back and forth about what would be best. Finally, the inherent threat of flooding, coupled with the thought of a prolonged power loss, made me decide to flee. Justin doesn’t do “Amish” well, and the batteries in those DVD players would only last so long. Seeing as this situation could result in a bored autistic child being trapped without electricity for the better part of a week, we gratefully took family friends up on their offer to stay with them. We were very fortunate in that we had several offers to accommodate us. The one including the generator won.
The adventure started out well enough. The people we stayed with are family without the actual blood connection, and we’ve raised our kids to consider each other cousins, and the adults are viewed as aunts and uncles. Despite a large age difference all three of my friend’s children pitched in to keep Zach occupied, and he reveled in the attention he doesn’t get from his brother at home. Over the course of our stay my smallest son was able to attend his first Bar Mitzvah bash (Mazeltov!), sleep in a bed other than his own for the first time in his young life, and even find out what it’s like to have a roommate. He ran around that house and bonded with those boys perfectly, so much so that he would later declare he’d prefer to live there, and that my presence wasn’t required. Zach was enthralled with the concept of “big brothers” who played with him, and reveled in every minute of our stay.
And then, there was Justin.
I’ve gotten better over the years at somewhat disconnecting from his angst at times, because if I hadn’t, I might have drowned in it. I’ve learned to identify which reactions are an offshoot of autism for Justin, and which are simply the kvetching of a boy who’s bored and would prefer to do something else. The latter, and sometimes the former, are generally not tragic. I’ve figured out how to redirect him most of the time, to cajole him to stay at the beach more than seventeen minutes, or convince him he must indeed stay at my sister-in-law’s for Thanksgiving dinner. As he’s grown older it’s become easier to witness his unhappiness, particularly as with maturity (his, not mine), more options to rectify each situation have been unveiled.
But what I witnessed with my son this past weekend was no cousin to kvetching. It was pure, and unadulterated, suffering.
I should mention at this point that the home where we stayed could not be more welcoming to children. It was important to my friend to create a haven through which her kids could entertain, and they do this very well. Their house has been a sort of sanctuary for us, an “anything goes” locale, which is a treasure in a home where autism does not rule. If there was anywhere on earth Justin could have felt comfortable to reside other than my mother’s, this was it. And no matter what we tried, it simply wasn’t enough.
For the twenty-odd hours we were there that he was conscious (I counted) he cried, exhibited OCD-like behavior I hadn’t seen since his last serious illness, and he paced. His was a body in perpetual motion, unable to self-regulate, frantic for escape. I literally watched my son retreat into himself, with sporadic attempts at connection with those around him. He was completely and utterly bereft at having to relinquish his routine.
I couldn’t help but be struck by the dichotomy of the situation. One boy being cared for mostly by other children, out of my sight for hours (!), and perfectly safe. One boy who would literally have done anything for a room with carpet the color of sand, and stars shining from the ceiling. Often I find I’m immersed so much in our version of “normal”, that I forget just how different Justin’s childhood experience truly is from other kids.
This weekend, I was not-so-gently reminded.
Of course, it all worked out in the end, because truly, there was no other option. Justin woke once in the middle of the second night, but as I held my breath he heaved his body up, saw that his mother was next to him, and thankfully immediately slid back into slumber. We were able to make the trip home on Monday, a three-and-a-half hour journey that included my first ever solo pit stop with both of my children. Through sheer boredom and a desire to banish children’s tunes from my CD player I even began teaching Zachary French, and I now believe he is more fluent than I’ll ever be again. After inching through the streets of Princeton I learned that Zach would like to attend that institution (“it looks like a castle, Mom!”) and made a mental note to add calculus and Mandarin to his curriculum. It was a trying voyage but we made it home, and Justin’s joy was beautiful to behold.
Of course Zach immediately threw a semi-tantrum and demanded to return. Seeing as how my friends had once contemplated a fourth child, it was tempting.
We’ve all recovered by now, but I realize I have some planning to do. Through hard work and sheer tenacity (infused with a healthy dose of desperation) we’ve conquered Justin’s aversions to eating, sleeping, potty training, and refraining from expressing his displeasure with teeth marks. I’ve got my sights on Disney for next year, and of course that whole “he needs to live somewhere else someday” issue forever looms over my head. We’re going to have to teach my boy that no matter where he rests his head at night, at least for now, he’ll eventually return home again. It seems my next battle is at hand. Thankfully, with things going so well here, I think I’m actually up for trying another sleepover, someday.
As long as it’s not tonight.
July 14, 2011
In Repair
I close the door of my eldest son’s room gently behind me, secure in the knowledge we’ve completed our nightly ritual of singing, hugs, and one last dramatic run across his bedroom by me to assure him he is loved. Justin seemed absolutely exhausted tonight, which I’m sure is due in part to his unfortunate rejection of slumber at 5:15 this morning, and also due to the fact I purposely wore this child out in our pool today so he would sleep tonight. Both his father and I can make it through one fifteen hour day with him, but two in a row is torture.
His parents know their limits.
I hear the click of the doorknob settling into its groove as I walk over to my youngest son’s room, and find him performing “transformer moves” as my fatigued spouse tries desperately to sheathe him in his summer pajamas. I selfishly want no part of this scene, so I turn and walk into the bathroom to prepare his toothbrush so we can wash away the day’s detritus. I step into the hallway, and then I hear it.
My oldest son is sobbing. Abject, soul-stripping sobs.
I yell to Jeff that Justin is crying, which isn’t exactly the most apt description of what he’s doing but it will have to suffice, and rush back into his room. He picks his head up for a few inches, then lets it fall to the pillow in despair, and I slide into the bed next to him as he sidles up to me for comfort. In an effort to console him I quickly release him from the layers in which we ensconce him for comfort, the fishy throw, the under-the-sea sheet, and the sleeping bag which serves both as cocoon and conductor of warmth in the house we keep frigid, so his mother can conquer her hormones and sleep.
My eyes adjust to the feral darkness we’ve created to elongate his slumber, and I see his tears, those salty microcosms of sadness sliding gracefully down his face. Generally when he cries, which thankfully isn’t often anymore, he buries his face into the nearest trusted adult for comfort, seeking the murmurs and sounds of solace that accompany any embrace. Tonight however, he simply stares at me, eyes locking with mine, imploring.
And I know in my heart if he could talk, he’d say “Mommy, fix it.”
Justin and I have always had a special connection, a conduit into each other’s minds that has allowed us to understand one another even without the ease of the spoken word. I can clearly remember panicking a week or so after his diagnosis when it finally hit me that he might never talk, might not even manage a form of communication intelligible to most individuals in the “typical” world. I recall wondering not only how he would ever get his needs met, but worrying that at some point the facility with which I’ve been able to understand what he requires might disappear, leaving an angry, frustrated boy in its wake. Fortunately, this scenario has never taken place. When his PECS photos, his Springboard, and even his iPad have not sufficed, in general I’ve simply known what he needed. It is a gift for which I remain eternally grateful.
Except, tonight this gift has failed him, for I have no idea why my son is heart-broken, and no idea how to make the demons disappear.
If I have to take a stab at the origin of these plaintive cries I’m guessing it’s due to the fact that we’re hovering in hiatus. He’s taken to staring at that photo of his teacher gracing his nightstand a little longer that usual these days, and perhaps he’s missing her. I show him pictures of his school frequently and perform a daily calendar countdown to reassure him of his return, but I’m never certain of how much information gets through to him, and I still can’t ask him. He could be getting ill, but I can’t question him about his tummy or his head, can only brush his skin to search for fever. I realize his despair may be linked to something as simple as the complete disruption of his coveted routine, but I can’t query him about his possible lack-of-ritual angst, can only reassure him that life will return to normal soon.
My son is eight years old, and I still can’t ask him how Mommy can make it better.
I know this will be one of those moments that rips away my elation of how much progress he’s made, and slams me mercilessly against the big picture, the truth of how vulnerable he’ll always be in our world. It’s not an orphan moment. I dwell there any time an innocent comment is made about his future, his appearance, his intellect, or his attraction to pretty girls. There will be limits to this child’s life. I’ve discovered that since he dwells predominantly in a joyous landscape that I sometimes forget these barriers, am enmeshed safely in our “new normal”, able to forget autism’s confines.
But right now, the silence that surfaces when the sobbing’s concluded is a giant hand on my shoulder spinning me around, mercilessly forcing me to face reality.
And tonight I hate it, loathe that I can’t discuss my son’s sadness, construct a plan, pinpoint his fears, and banish them. Instead, all I can present him with is the solid weight of my arms wrapped around him. I can give him the tip of my forefinger, which will trace his forehead and the bridge of his nose in a tradition that has always elicited the sanctuary of slumber, even in his most agitated form. I can offer him these things, and I will.
But tonight, for me, it’s simply not enough.
May 18, 2011
Letting Go
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.
April 14, 2011
Eyes Open
I recently subscribed to the official Autism Speaks Blog, which along with the Schafer Autism Report is where I usually turn to for any recent developments in the world of autism. I’m happy to say that the tide seems to be turning in the past year, with more and more positive articles being showcased by both publications, but I read one last week in the AS blog that stopped me cold. According to the article, a mother in Massachusetts apparently withheld cancer treatments from her severely autistic son, and he died. Now a jury of her peers has to ascertain her motivation for the purposes of sentencing severity, has to discern what was truly in her heart as she enacted this deprivation.
I agree with Margery Eagan, who wrote about the trial in her column in the BostonHerald.com. I’d hate to be in their place too.
Clearly, her son had the right to continued medication for the leukemia that reared its ugly head after a remission from his non-Hodgkins lymphoma, leukemia being a cancer with an 85-90% recovery rate, that according to the boy’s doctor was being successfully treated. His mother was not a medical professional after all, was legally charged with his care. This boy had a right to his life, however long or short it was meant to be. He was, literally, at his mother’s mercy.
I’ve never met Kristen LaBrie. I have no idea whether what she declared on the stand is true, that she was simply so afraid at how sick he was after taking the medications, terrified that if he fell further ill from the treatments she had to pry open his mouth to give him, that he would die. I will never know if the prosecutor’s spin is more apt, portraying a woman riddled by resentment at the small role her ex-husband played in raising their son, a boy reportedly consumed by allergies and severe autism years before cancer completed the ailment trifecta. I will never be certain, as with some cases that come before a court of law, if infused within the truth, in this circumstance, are varying shades of gray.
After I had read a few related articles to this story I tried to envision what the last few years had been like for this woman, regardless of her true motivations. The articles stated she was broke, and for the most part the sole care-giver in this child’s life. I tried to imagine my existence as hers, and I just couldn’t fathom it. I removed my educated, loving husband from the picture. I evaporated the security of salary, the knowledge we can provide for our sons’ needs on a daily basis. I destroyed the sanctity of sleep, because one of the side effects of the chemotherapy medications was her son’s insomnia, which of course, meant hers as well. I stripped away all pretense of any pleasure, and replaced it with the agony of watching her son suffer on every level possible, both physically, and with certitude, emotionally, for years. I literally cannot envision how one endures that much pain.
But her son couldn’t speak for himself. She was his mother. No matter what, she had a moral imperative to treat him.
There is one other absolute truth here that arises from this story of which I am certain, particularly during Autism Awareness Month. I am so grateful for the increase in articles regarding the housing situation for adults on the spectrum, and the coverage of the ever-growing number of states jumping on the insurance bandwagon to offer families some financial relief. I am thrilled that more and more school districts’ programs are being lauded in the press for their efforts, and that increased attention is being paid by pediatricians nationally to earlier diagnosis and treatment. Reading about documentaries highlighting the triumphs and challenges of two articulate adults on the spectrum makes me happy, as does an international campaign to “light it up blue”. To me, it all signifies progress, is a continued celebration of collective triumphs.
But I also believe it’s crucial to be aware of what’s happening to those around us, those individuals comprising our daily world who are struggling with the all-pervasive ramifications of this disorder, one that can often overtake our lives. It is crucial we are aware of how that neighbor is faring, how that nice mom in the special education PTA who looks so stressed is doing, why that father of the child in our son’s class looks so sad at the spring fling. We need to keep our ears, eyes and hearts open to what I consider our extended family, and offer a hand whenever possible. Mitigating the hardship of one family’s existence is just as important as lighting a talk show stage blue, writing a book that conveys comfort to thousands, or creating legislature that eases that backbreaking load families often carry for decades. And yes, we continue to require autism awareness on a worldwide scope.
But in order to prevent the recurrence of a tragedy like the death of Jeremy Fraser, I believe we require it just as much at home too.
March 16, 2011
In Memorium, Part Two
This past Saturday morning, while leaving my husband alone downstairs to fend for himself with the wee ones, I snuck upstairs to steal a few glorious solo minutes in the shower. Of course, no trip to the second floor would be complete without a stop at our computer to compulsively check email/Facebook/how many hits I’ve had on my blog today, and since this is one obsession I’m loathe to deny myself, this time was no different than any other. Usually there’s nothing of great interest during the fairly early hours of a weekend morning for me, but as I tore myself away from the coverage of Japan, one item in my email caught my eye.
The Schafer Autism Report was out again, and I bargained with myself I’d simply skim the headlines, and save the “issue” to peruse later. There were, after all, two small, energetic children waiting downstairs to be released from captivity into any activity that does not include the four walls of our home, and I have my responsibilities. I reminded myself to skip shaving my legs (oh, what a sacrifice) so I could get downstairs sooner, began to swivel my favorite leather chair towards our bathroom, then stopped mid-swerve as I saw the headline: “PA Caregiver in Autism Death Sent to Prison”.
Those kids would have to wait.
I first wrote about this horrifying event last summer (here), so if you want the full back-story you can catch up with my prior posting. I penned the piece about an autistic man literally boiling alive in a van due to the negligence, and unwanton cruelty, of a caregiver just a few months after a similar story of utter horror had run on the SAR. This story was beautifully covered by both adiaryofamom and MyBrainWantstoGoHome, and if you have time to read their posts, I suggest you indulge. Educating yourself on these matters may one day, for a child, result in the difference between life and death.
I chose in part not to write about the mom who poured poison down her autistic children’s throats partly because I felt these two bloggers covered the event so well I had nothing to add (an unusual event for me), and partly because I am certain this will never happen to my children. There may not be much I can control in life, but as I mentioned in my prequel post, of this I am sure. I will never kill my kids.
So, I decided to write about the ramifications of permitting a helpless, non-verbal, autistic man to die an excruciating death alone, perhaps within calling distance of his caregiver (had he of course possessed the ability to speak), because this is a possibility for my eldest child that haunts me every single day of my life. At some point, hopefully a long, long, time from now, Jeff and I will be dead, and Justin will be left to spend the remainder of his life without us. I predict that his brother will be able and willing to look in on him from time to time, but I am aware he cannot be his shadow twenty-four hours a day, for perhaps forty years. All it takes is mere minutes, or seconds perhaps, for his caregivers to forget he’s in a pool, or to turn their heads as he runs unattended into a busy street. His life could end because the sheer magnitude of caring for an adult autistic man every moment of his days will be overwhelming, and accidents could easily happen.
Or, as in the case of Bryan Nevins, he could be left to dehydrate to death in a car, while somebody who doesn’t give a damn texts her boyfriend.
As I sat in my slightly sweaty work-out clothes and read the short piece chronicling the outcome of the trial, I could feel my entire body tense at the words, felt an overall shudder of disbelief creep over my limbs. It seems that Judge Albert J. Cepparulo of Bucks County, PA was less than impressed with Ms. Stacey Strauss’s acceptance of her responsibility in her charge’s death. In fact, he was quoted as stating “Frankly, Ms. Strauss, I don’t believe I’ve heard a less remorseful statement from someone about to be sentenced”, with this remark following Ms. Strauss’s apparent sobs, which were bookended by frosty denials, as she pleaded her case.
Just to be clear, this judge, in his time on the bench, had never heard a less remorseful statement, as he subsequently sentenced Ms. Strauss to two to five years for involuntary manslaughter. And while I’m relieved there have been serious repercussions for the accused, I’m certain that punishment won’t alleviate the lifetime sentence Bryan Nevins’ parents had handed to them. They most assuredly will have to contemplate both the fact that their son is dead, coupled with how he died, until death itself claims them.
I would imagine those gruesome, unfathomable images will make their intrusive presence known to them often. Most likely, those visions will plague them every, single, day.
Maybe Ms. Strauss is congenitally evil. It is possible of course that she was just having a bad day, perhaps embroiled in an argument with her then-beau. It is conceivable she had a bad childhood. I can truly say, in each instance of excuse as to why she cruelly allowed this man die, that I most wholeheartedly do not give a crap.
What chills me the most however, is the possibility that she simply did not regard Mr. Nevins as fully human.
People have asked me frequently why I write this blog, and why others share so prolifically about their daily lives. I do not intend to speak for other writers, although I personally know a few who share my sentiments. I will, because I possess the precious gift to do so, only speak for myself.
I write about my boys because they are both exuberant, emotional, loving, children.
I write about my eldest son because Justin, for those he adores, has more empathy encompassed in his little finger than many adults I’ve encountered during my lifetime.
I write about Justin because my eldest is completely without guile, possesses perhaps the purest soul of any individual I’ve been fortunate enough to meet.
I write about my boys because their smiles simply take over their countenances, leaving those around them buoyed in spirit, forever altered.
I write about my boys because they are fully, and completely, human.
I wish, God how I wish, that today’s children will grow up with a different perspective on disability than perhaps our generation did. I pray that the school programs that have been implemented, the organizations, the television shows, the films, the books, the blogs, the laws, will continue to alter peoples’ perspectives on the inherent worth of our children. Perhaps, most importantly, the dialogue that transpires between parents and kids about that neighborhood child, or the one in homeroom class, will serve to further the cause. I can only hope from this hard work that awareness will continue to grow, and a travesty of these proportions will never be repeated.
And as I end this missive, much as I did my last post on this subject, I share these sentiments with all of you:
I am so sorry, for the sister who has lost her sibling, her childhood companion.
I am so sorry, for the parents who have unwillingly relinquished a cherished child.
I am so sorry for this man’s autistic twin, for his having to face life without his beloved best friend.
I am simply, so, so, sorry.
November 14, 2010
What If
It’s before dawn as we make our way toward Jersey Shore hospital, a familiar route because it’s near both Justin’s neurologist and the site of Zachary’s penis surgery when he was an infant (yes, I said penis). Jeff and I are surreptitiously sipping cokes, trying hard not to let Justin see us entertaining our version of a caffeine habit because it’s his turn to have a minor procedure, and he can’t eat or drink anything until it’s done. After a six month stint in which my son managed to contract nine ear infections (most on Friday afternoons, post-pediatric hours, of course), we have taken him to an ENT, and practically begged for tubes. After his recent rash of illnesses and an exam that revealed the smallest ear canals in the history of children, ultimately the begging turned out to be completely unnecessary.
The wonderful, autism-friendly Dr. M told us after the conclusion of our first visit just to figure out a convenient day for us and make an appointment, which I promptly went home and did. After ten minutes stuck on hold while being regaled with the virtues of ear tube surgery (clearer speech, greater listening skills, a better night’s sleep) I admit I was tempted to go for the two-for-one special. Ultimately, I remained mature enough to make this about my son, and booked a day in the fall after our pool would be closed. The concept of an improved night’s sleep continues to remain tantalizing.
I know we’re going to arrive at the correct wing of the hospital a good half an hour early, but our choices were either to place him in the stroller and kill ninety minutes in the waiting room, or try to keep a ravenous seven-year-old child out of our refrigerator. I figured if he went through every new and old DVD we’d purchased for the occasion I could always wheel him around the hospital, as long as I could avoid the cafeteria. Besides, if he made too much of a ruckus they might just let him back to intake earlier, a place I remember from giving birth to be loaded with televisions, pillows, and those really wonderful warmed-up blankets. After a protracted waiting period in which I see no less than three news stories about “Cigar Man”, our nation’s newest version of the garden gnome, we are finally called back by a friendly nurse who tells us it’s our turn. We whisk Justin by the coffee, tea, and abandoned-looking donut section and ultimately reach our destination, where I am thrilled to see those fabulous blankets await us.
Post-baby purge, those soft warm squares and a nice drip of morphine are almost as good as a spa day.
We weave our way through a triad of professionals, nurses, admin assistants, and eventually the anesthesiologist, who asks us the most intensive questions of them all. I am forced to recall my son’s medical history as well as my own, a conversation which at this hour of the morning I deem completely unconstitutional. We run through the litany of potential allergies, asthma worries, and heart concerns, and finally our gentle sleep doctor asks me if there are any other issues he needs to know about. I respond with what I believe to be a kindly and ironic “Nope, just autism”, a statement which does not even elicit a sliver of eye contact from him.
Oh well, so much for my attempts at humor.
Within minutes of trying to slip my son into the hospital’s air-conditioned version of haute couture the head nurse returns to wheel him away, reassuring me that he can keep his DVD player with him. She reminds us that the entire procedure will be over in ten minutes, and that someone will come to collect Jeff and me and take us to recovery.
Oh, that loaded word. Can’t seem to escape it wherever I go.
I kiss him lightly on the lips and tell him to be a good boy, and he is pushed to the door while thoroughly engaged in “Up”, oblivious to the fact he has left his parents behind. Jeff begins gathering our paraphernalia, but I remain transfixed, watch the sliding doors mesh with each other as my son vanishes to ether, and slumber. I never allow myself this ambiguous luxury, but for this one moment I permit myself to wonder.
What if instead of a surgery to diminish illness, this was a procedure to eradicate Justin’s type of autism.
I doubt I will see this happen in my lifetime, nor more importantly in my son’s. Millions of dollars have been devoted to cancer research over the course of the last fifty years, and although great strides have been made, people still succumb every day. Heart disease remains the number one killer, and despite numerous remedies, colic still rules the world of many infants and their parents. If we can’t yet conquer gas, I’m certain it will be many decades before we’ve seriously infiltrated the more serious manifestations of autism.
But just for a moment, I allow myself to wonder, to picture what our lives would have been like without this disorder.
What if there had been no frustration, no tantrums, no insidious, unpredictable rages.
What if his urge for repetition, that obsessive need for an order indiscernible to anyone else’s eye, were destroyed.
What if he had a true friend.
What if he could talk.
And I stop myself there as I always do, because after all these years, even in my mind, I still cannot hear his voice.
I mechanically begin to help Jeff forage for our stuff, abort my musings, and after a brief unplanned detour through the women’s changing room, which may be the most titillating event of my husband’s entire week, we resume our seats near the flatscreen. I have just enough time to tell my husband to watch tv so I can finish the last pages of my novel when the nurse is through the door, telling us he did beautifully, remains unconscious, but we are welcome to see him.
I hitch up our bags and cross the waiting area one last time, and stride into the hushed hum of recovery. Justin wakes up wild as I’d been told he and every other child does, but eventually, with our ministrations, he calms down. When I ask if we can take him home our assigned nurse asks us if he’s 80% back to normal, and hit with yet the second loaded word of the day, I simply smile and shake my head yes. Together we manage to strap him back into the stroller and return to our car, then slide him into his restraints. I climb in next to him, wedge myself in tightly between my oldest son and my youngest son’s car seat. He is whimpering but fairly complacent, and uncharacteristically still. He lets me take his hand, and permits my other to cup one of his ears while I press its mate against my shoulder. He actually turns his head slightly and raises it to kiss my cheek in one of his common gestures of gratitude, then settles back into my embrace. We remain this way throughout our journey, he, I’m certain, lost in the discomfort of his adventure, and me, lost in thought.
What if.
October 6, 2010
In Memoriam
A few months ago I read a chilling article in the Schafer Autism Report, a piece describing the murders of two autistic children, ages two and five, at the hands of their own mother. Sadly, this is not the first article of its kind I have read since my eldest son was diagnosed with autism, and I doubt it will be the last. Of course I was horrified and considered writing about it, perhaps in part simply to banish the images of their terrible deaths from my mind. Life however kept me from the computer for a few days, and in the meantime I had the opportunity to read two separate blog entries about the tragedy, one on:
http://adiaryofamom.wordpress.com/2010/07/23/the-unthinkable/,
and the second on:
http://sonidoinquieto.wordpress.com/2010/07/26/normal/
Both pieces were eloquently written, and encompassed everything I wanted to say, which rarely happens to me, as opinionated as I am. I eventually decided not to share my thoughts, but not just because the two authors of these blogs had collectively done such a beautiful job treating this subject. I realized I also didn’t feel compelled to scribe my thoughts because despite the horror of the event, despite the comparatively close ages of the children to my own, in some way I found I couldn’t relate to what happened. It seems there are few things I am certain of in this world, fewer now since I’ve become a mom.
But one thing of which I am irrevocably certain is that I will never kill my kids.
So, I let this topic go, said silent prayers for those children and any grieving family members they left behind, and did what we all do when something occurs beyond the comprehension of our everyday minds. I let it go as best I could, and moved on.
Unfortunately, that respite was short-lived, as a few weeks later I read a similarly chilling report of the death of an autistic person, this time an adult. This young man had been a resident of a group home in Pennsylvania, reportedly a rather good one. He was one of a set of triplets, one neurotypical sister, one autistic brother. One day, apparently returning in the van belonging to his residential placement, the driver inadvertently left him in the back of the vehicle and forgot he was in there for over an hour. In the middle of the day. In July. During one of the hottest summers we’ve had in a while.
He died. This young man stayed in the car, slowly boiled to death in the sun, and died. I couldn’t wrap my head around this initially, so of course I went into denial mode. I knew his death had to have been horrible, so I couldn’t dissipate those images for myself. He was gone, so I had to move on to thoughts of the family, not just the parents or the sister, but his autistic sibling as well. I placated myself with hopes that perhaps both men had been so severely affected they really had no relationship with one another, that the surviving adult would not truly miss his sibling, that the grieving would be confined to the rest of the family.
I read further, and discovered that in fact the two had resided together at the group home, and were inseparable. The mother was in fact consulting a psychologist to try and figure out how to explain to her remaining son that he’d never see his brother again.
They were best friends.
That’s when my stomach hollowed out and my eyes filled with tears, an infrequent occurrence these days because I find indulging in it just takes too much out of me. This time, I had no control over the situation, because I understand too well the “big picture” import of this calamity. I comprehend the ramifications for the parents, the sister, the brother who will most surely grieve the most. This death, and the circumstances surrounding it, play upon my darkest fears regarding the arc of Justin’s life, and what will happen to him when I am gone. The thought of someone harming him, or perhaps almost worse, the idea of him being left alone and unloved for the lion’s share of his life, is unspeakable. I do my best to banish such thoughts, because for once, I am capable of admitting that some things are beyond even my control.
But I cannot banish my grief for this family, and I refuse to try. I won’t attempt to reconcile this loss with everyday platitudes, that this man is in a better place, that perhaps he had a good childhood, that he appeared to have been loved. While these things may all be true, they cannot be mitigated by the enormity of his loss, nor the longterm, enduring effects upon this family.
A mother has lost her child. A father has lost his son. A sister not only has lost a sibling, but also the immeasurable relief of knowing that when her parents are gone, her brother would have a daily companion, a constant comfort as he aged.
Most importantly perhaps, a man has lost his brother, his sanctuary, his mirror to himself.
All of this, all the myriad implications of this event, the ripple effect that will surely haunt those left behind for the remainder of their lives, could have been avoided if a simple choice had been made. A choice to look around a van and make certain no one had been left behind. A choice to conduct a head count after emptying the vehicle and reaching their destination.
A choice for someone to actually fulfill the role of “caretaker”.
And as I finish typing these words and know my part has ended and this family’s devastation has just begun, I only have this left to say, for there are really no words that can convey the magnitude of this loss other than these:
I am so truly, truly, sorry.
Autism Mommy-Therapist 