October 18, 2010
“No Justin, don’t touch!” I yell, perhaps a little more loudly than I intended, but strongly enough that my son heeds my instruction. I watch him as he leans forward in his stroller and replaces the walkie-talkie he’s grabbed from its holster, because unless he’s completely caught in the clutches of OCD, he always complies with my requests. I see a look of slight relief on the face of the teen-age girl to my right guarding the entrance to the beach, and look up to my left to meet the gaze of a woman who is staring straight at me with a look of intensity, and a trace of what I quickly register as slight disdain. She is so focused that at first I think I must know her and she simply doesn’t like me, which is absolutely within the realm of possibility, but as I study her features further I realize she is a stranger to me. I then think she might know Justin, but as she continues to stare and makes no move toward acknowledging him, I realize she doesn’t recognize him either. She, in fact, is simply reacting to my firmly delivered command to my child, of which she clearly does not approve.
Here we go. Face-to-face with “Judgy Lady”.
I decide to ignore her, as I’m really not in the mood for a lecture, what with the 100 degree heat (a slight exaggeration) and the fact that my collective lack of “Kim time” on this late August day has made me slightly crabby (an accurate representation). I turn away from her, and search for the dollar bills I’ve crammed into the side pocket of the stroller. Since I’ve broken eye contact with her I hope she’ll get the hint, pay up her extortionist public beach fee and go away, but I am to have no such luck. She has positioned herself so that I have to look at her when I pay the life guard, and I realize there’s no getting out of this. I offer up my money, our eyes meet again, and with a look of either constipation or righteous indignation, I’m not certain which, my new friend opens her mouth and says “You REALLY told him, didn’t you?” then looks down at my son with a smile, as if to say, “don’t worry, I won’t let mean mommy hurt you”.
I have multiple options here. I can ignore her in true ABA fashion, decline to reinforce her bad choice of butting into my life, complete my transaction, and descend the stairs to the beach with Justin in tow with nary a glance behind me. I can don my autism ambassador suit and explain to her that speaking to him firmly is this pretty teen’s best chance of not watching a several hundred-dollar souped-up communication device being hurled off the boardwalk into a sand dune, never to be seen again. I can also tell her to shut up and mind her own business.
But I don’t have time to choose, because at that moment Justin decides to let out a string of vowel sounds coupled with his almost constant companion, his rhythmic dance of rocking to and fro, and as I glance back at Miss Wonderful I see her entire face change, and literally watch her take a half step backwards. She then looks at me quickly with embarrassment, thrusts her beach fee into the girl’s outstretched hand, and scuttles down the rickety stairs to the sand. It’s over so quickly it takes me a moment to place the emotion that crossed her face when she regarded me after Justin made his vocal debut, but all too soon I identify the look.
It was pity.
I realize she had no idea Justin was disabled when she made her commentary, although a seven-year-old boy in a stroller at the Jersey shore should probably have been a dead giveaway. No, initially she just felt compelled to let me know that clearly my selection of words, or perhaps my tone of voice towards my son, were out-of-order here, and that truly I should rethink my parenting choices. As soon as Justin “spoke” she knew she was outside of the realm of “normal”, and understood that she’d just dissed the mom of a child with special needs, one who might actually know what she’s doing. As I analyze her reactions I find I can deal with her embarrassment. After all, she should feel badly about criticizing a mom, particularly one she doesn’t know, one who is clearly not soliciting her opinion on any parenting decisions whatsoever.
But I’m enraged at the pity.
I want to run after her and tell her that this entire “conversation” should not have taken place because she doesn’t know my life, I don’t know hers, and we should all keep our judgments to ourselves. I want to shout at her that she should have kept her mouth shut not because my son is different, and she’s just picked on his tired mom, but because as women we need to build each other up, not tear each other down. I want to shake her (just a little bit) and admonish her not to feel sorry for me, that he is my beautiful boy, and we love each other, and most days, it’s enough.
But I do none of that, because leaving Justin up here on the boardwalk alone is annoyingly illegal these days, and because I know it would be a waste of time to confront her. Instead, I slide him over to the railing, affix our trusty combination lock to the stroller, and release the straps keeping my boy safely inside it. He bounds to the top of the stairs, and just for kicks, because this will be the most exciting thing that happens to me all day, I scan the shoreline for Madame Annoying, and actually locate her at water’s edge. I make a conscious choice to steer Justin in the other direction, and another choice to let it all go, move on from my righteous indignation that can do nothing more than steal precious moments away from me and my son. Our feet sink into soft sand, we head toward the surf, and I hurl one last thought up to the universe, purging my irritation as we move forward.
If you don’t have anything nice to say, don’t come near me until you do.
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.
April 14, 2010
Go fly a kite. This is a truncated expression of my youngest child’s exuberant exclamation of “Let’s go fly a kite, mommy!”, but you get the gist. He proclaimed this order yesterday as I tried unsuccessfully to keep up with him at a lovely local park, his three-year-old legs pumping relentlessly toward his desired goal. As he careened speedily toward the unsuspecting family with the brightly colored cloth diamonds, the trembling shapes apparently sensed his impending presence, and attempted to catch a current to escape both their earthly bonds, and my son.
These four words evoke such special memories for me, reminders of a simpler time and place in my childhood, our forays to our family’s cottage on Long Beach Island, New Jersey. Every summer since the year I turned nine my father’s family made the pilgrimage to my aunt’s house just one short block from the beach, an event my brother and I anticipated eagerly every season. As we crossed the bridge that transitioned the modern world to the island I recall feeling even the air we inhaled was different than mainland air, as if it alone held the promise of all the adventures to come. I remember feeling we were “roughing” it then, the kids sleeping in the unair-conditioned attic loft, exchanging the television and boardwalks of home for marathon Monopoly games and long, languorous walks on the beach in the evenings. Most days and nights, the winds benevolently conceded to our frequent requests, and there was kite flying as well. Glorious, unfettered, kite flying.
Every summer my brother and I heralded the season by choosing a new kite from the nearby general store, a required purchase to replace the demise of the prior year’s airborne missile from the inevitable crash into the fence protecting the dunes, the irrevocable tangling of the string, or the occasional loss at sea. We both looked forward to the almost daily event, the feel of the wind whipping our faces, our attempts to enmesh our feet firmly in the forgiving sand, the familiar ebb and flow of string slack and taut, alternately dipping toward earth and straining toward the heavens. Flying a kite requires a serious amount of concentration, a focus on the activity at hand that precludes contemplation of anything else that was going on in our lives. Perhaps that’s why we enjoyed it so much. Its simple pleasure forced us to live in the moment.
My son’s joyful request delivers me back into that mode, that time when I could simply exist in the present, without worrying what the future holds for both of my autistic sons. I am hopeful that when I’ve extended the tradition to the new generation and purchased a kite for my child that the act of flying, the give and take of gravity, will return me to that simpler place, where the only push and pull I considered was the tether of white leash in my hand, not the intimate dance of meeting my own needs versus those of my special needs children. I hope that when we fly a kite he will be as engaged in the activity as I was, and will forget his struggles, as I once did mine. I hope that he will love the act of releasing his treasure to the blue beyond as much as I did, as much as I hope to do again with him.
He reaches his destination and approaches the unwitting family, asking with both assurance and authority to “try it please”. Their own boy graciously concedes, and without entirely relinquishing his hold allows my son to grasp tightly to his prize, encouraging him to tilt his head toward the clouds so as not to miss a moment of flight. His body remains earthbound, but I can almost see his imagination soar as he envisions what will transpire far above him. He is amazed at the distance, the singing of the string binding him to his new friend’s treasure. I am amazed as well, and grateful that my child can immerse himself in this event as I once did.
And I am grateful as well for this moment, this connection to my youth, and the ability to share it with my boy, my beautiful, complicated boy.