July 30, 2010
“We’re going to make it” I say half to myself and half to Justin, as I pull my somewhat recalcitrant seven-year-old along the rocky path to the swimming pool, where my new favorite person is attempting to teach Justin to swim. It’s his fourth lesson in a series of six, and he’s finally begun to regard this exercise as an experience somewhere in between a teeth cleaning and eating green vegetables. His mother actually finds the former event with him to be infinitely more palatable, as that attempt only occurs every six months.
I’m fairly excited that we’ll make the lesson on time, in part because I’m hoping the director of the Challenger program can achieve our goal, namely that Justin could walk out onto our diving board, fall into the pool, and doggie paddle four feet to safety. She’s fairly confident that one day he’ll get there, and as we’ve had several instructors previously who weren’t so enthusiastic in their future predictions, I’m thrilled I found this place. It’s been worth schlepping up to Justin’s school the next county over and driving him back down here just to see him actually attempt to kick and move his arms, rather than lying like a limp pad thai noodle in our own still waters. It turns out I can teach autistic kids ABA, but when it comes to swimming, I decidedly suck. At least I’m aware of my limitations.
The other reason I’m excited we circumvented the traffic accident near the parkway and made it here reasonably on time is because Justin’s mommy is making a new friend. Generally it would sound rather pathetic for a forty-three-year-old mother of two to be that jazzed up by the possibility of turning a playdate acquaintance into a genuine friendship, but frankly, I don’t get out much these days, and my opportunities are limited. These swim lessons afford me not only the chance to chat with an adult woman who also has two children on the spectrum, but permit me anywhere from thirty to forty-five minutes of freedom while a tough, determined swim instructor tries to imbue my oldest son with the necessary skills to save his own life. To say this time period is a win-win for me would be a gross understatement.
Truly, I’m grateful for this opportunity, and for a few other women I’ve met recently who also hail from Club Autism, not to be confused in any way, shape or form with Club Med. Back in Virginia I literally had only one “autism mommy” I could hail as friend, which was in part due to the fact we moved to New Jersey a relatively short time after Justin was diagnosed, and was also due to the fact that for most of those fifteen months I never left the house. Since my adopted state’s idea of an early intervention program consisted of a mere eight hours of speech and occupational services per month (a collective gasp is now rolling across the state of New Jersey), I was forced to spend the vast majority of Justin’s conscious hours each day trying to encourage him to sign for bubbles. That, coupled with the fact I often didn’t have the chance to shower on a frequent basis, often precluded my attempts to get out and meet other people in similar situations. Deodorant just can’t do it all.
Now that my youngest has turned three (an age I would find far more odious than two if I wasn’t just so damn grateful the kid actually has the ability to talk back to me) I do seem to be able to exit the confines of my home a little more frequently than I did in Virginia, and I’ve met some nice people. I’m not looking for “soul mates”, as there are six women, my kindred coven, whom I’ve been friends with for twenty years or more who fulfill that requirement for me. No, I’m simply been searching for a few good women who not only have children close to my youngest son’s age, but who don’t confuse terms like “sensory diet” and “eloping” with guaranteed weight loss and something fabulously romantic. I think I’ve found a few, women who will understand when I tell them Justin’s been awake since 3:00 AM that day that what I’m really saying is “Oh my God, will he do this forever and I’ll never be able to write coherently or suffer through another P90X workout EVER AGAIN”, women who will remind me gently that even autism is generally cyclical, that it is likely one day I will eventually sleep through the night. That reassurance, that complete understanding of any given situation, is priceless.
And as I hand Justin off to his waiting teacher and curve my way in and out of the picnic tables, the last of which supports the weight of a woman with whom I’ve begun to have an invaluable rapport, I relax, just a little, and enjoy the moment at hand.
July 28, 2010
Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist.
Today’s guest blogger is Jess from Diary of a Mom. Jess originally posted here on June 24 and I am honored to have her back again. Thank you!!
It is Monday afternoon.
My daughter, Brooke and I are driving in my convertible. The top is down, despite the heat.
The road we are on is shaded by a canopy of majestic trees. The sun shines through them here and there, sprinkling the road with light. It is breathtakingly beautiful.
I haven’t noticed any of this yet. I’m too busy focusing on the mission at hand and worrying about seventy-two things I can’t control.
We stop at a light and I reach a hand back to Brooke. Often now, she will grab or even hold my hand, if just for a moment. But not this time.
“I’m doing this,” she says. Even the fact that she is offering an explanation for why she’s not going to take my hand, well – I don’t have to tell YOU, do I?
I look back to see what ‘this’ is.
She is leaning into the breeze. Her arms trace a wide circle ever so slowly over her head.
“What are you doing, baby?” I ask.
“I’m feeling it,” she says – ONE. WORD. AT. A. TIME – as is her way.
“Feeling what, honey?” I ask.
“The wind,” she says.
The light turns green and we begin to move with traffic. I steal a glance at her in the mirror and see her arms sweep the air above her, then circle down around her body – swirling the air into energy and color and light. I am in awe of what my daughter’s joy can do. I swear I can actually see it filling the space around her.
“How does the wind feel?” I ask.
She stretches her arm up and out and cups her hand. I know it will take her time to answer, so I wait. In the meantime, I do what she’s doing – I cup my own hand into the wind.
“It feels soft,” she says.
So it does.
I ask her a few more questions, giving her choices so that she won’t balk and summarily break the connection.
“Does it feel heavy?”
“Does it feel rough?”
As we drive, I begin to notice the sun shining through the trees. I see patterns of light on the road, on the hood of the car, on my daughter’s golden-brown hair. I feel the lightness, the smoothness of the air around us. I’ve stopped – if just for a moment – thinking about the seventy-two things I can’t control.
A couple of years ago, a friend’s father had asked me about the ‘upside to autism.’
I’d struggled to answer him back then, because at that point in our lives autism was simply a catch phrase for everything hard. It was lack of language. It was constant frustration and sensory overload. It was rigidity and fear and ever-present, pervasive anxiety. It was lack of joint attention. It was no functional play skills. It was motor planning deficits and coordination disorder. It was paperwork and doctors and aides and studies and specialists and therapists and words that we couldn’t define. It was sleepless nights and angst-filled days. I simply couldn’t imagine an upside.
I couldn’t yet know that, in addition to the hard stuff, it also came with a key.
A key to a whole other world.
A world where the sun shines through the trees.
A world where air is soft and joy is tangible.
A world where things we can’t control don’t matter.
A world where beauty abounds.
She’s done talking now, so we ride in a comfortable and familiar silence.
Out of nowhere she emits a laugh. A deep, hearty belly laugh.
And I am overcome with gratitude.
Jess can be found at diary of a mom where she writes about life with her daughters – Brooke, who is seven and has autism and Katie, who is nine and neuro-typical (though anything but typical) – along with her husband, Luau and their newest addition, Winston the dog.
My youngest son is pregnant. Yes, you heard me right, and since he’s an overachiever like his parents, he happens to be having twin boys.
Guess what their names are.
My oldest son Justin has had a home program for a long time, and we’ve been fortunate enough not to have scared off most of his therapists even after several years of working with them. One of them, a lovely woman who’s capable of motivating my son in ways I never thought possible, is having a baby this December. Unlike me, who started showing five minutes after conception and looked like I was about to give birth by the beginning of the second trimester, she has finally sported her baby bump about five months into her pregnancy.
I try not to hate her.
Since my youngest is three and a boy, and therefore oblivious to almost anything around him that doesn’t directly affect his life, he hasn’t really noticed the “extra” Nicole has been carrying around with her. Yesterday however, I had to stop him from careening into the next generation as he ran over to show her the latest gift his sitter had spoiled him with recently. As he slid into my outstretched arms he looked at Nicole’s gently protruding tummy, stretched his gaze up to her face and asked quizzically, “What you have?”
Ah, the time-honored “what you have.”
“What you have” is universal for “mommy, you have wet hair, dry it”, “daddy, you are eating your lunch, I want it”, “Justin, I didn’t require that toy all day while you were at school, but I NEED it now”, and several other assorted commands. It also signifies a desire for knowledge, a request to satisfy the curiosity that runs rampant in this particular three-year-old, and I’m certain, in many others. When Nicole and I both respond with laughter at his query he repeats his request, and looks at me seriously, hands on hips, eyes locked intensely on mine. In other words, we’d better tell him “what she has”, or he may not be held responsible for his actions.
I look down at my sweet son and reply “Nicole has a baby in her stomach. When you were a baby, you were in my tummy too.”
Zach freezes, stares straight ahead as he attempts to process this information. I can literally see the wheels turning in his brain. I’m afraid if he tries to think any harder I’ll see smoke next.
He breaks his reverie, lifts up her maternity shirt and places his hand gently on her rounded belly, looks up at Nicole earnestly, and says “get it out”.
Oops honey, not yet.
Over the next few minutes he tries to climb back into my permanently “closed for business” womb, and searches everywhere for the fake baby I bought during my first pregnancy to try to convince his older sibling that the forthcoming interloper wasn’t such a bad idea after all. He then informs us he is having his own baby, two boys in fact, and tries unsuccessfully to shove said infant down his shirt, bottle and all (guess he’s not fond of breastfeeding either). Once he slips his child through his collar with a little help from his mom, he subsequently gives birth in a time-frame of which any peasant in a field would be envious. The baby’s name is Justin, and as we repeat the act, Zachary follows. He’s a pre-schooler after all, and his imagination is a wee bit limited. I comfort myself that at least my grandchildren aren’t named after signs of the zodiac, or fruit.
My friends warned me that having a kid who talks might not be all it’s cracked up to be, but I’ll take the defiance, the occasional tirade, the endless questions any day. It’s just so damn fun not to have to play “guess what he’s thinking” all the time, to not watch him be frustrated by his inability to communicate. Whether it’s dragons in the sky or babies in the belly, those words will always be music to my ears.
And now, a few years earlier than I expected, I have two grandsons. Guess I won’t get that girl after all.
July 27, 2010
Today I’d like to thank the staff at Justin’s new school for helping him make such a safe and happy transition to a completely new locale, one that he had only visited once previously. He is beside himself with joy when he bounds to that bus in the morning, and looks extremely satisfied when I greet him at the end of the day. From writing about his antics daily, to remembering what toy he treasured at his “interview” and displaying it for him on his first day, I am grateful to all of his teachers for taking such good care of him. Thank you everyone!
July 26, 2010
It’s 7:35 AM on the day we celebrate our nation’s independence from the former tyranny of England, and I have dug my toes firmly into the sand, both literally and figuratively. We are here so early, my eldest child and I, that even on this particular day great swaths of shoreline stretch out before us unlittered by human detritus, devoid of the plenitude of children, toys, and towels that generally herald an impending holiday. Justin has been awake since 3:00 in the morning, with my husband taking first shift until 5, although I never was able to return to the sanctity of REM sleep after I heard the first utterances of vowel sounds snaking through our upper hallway. I took over shortly before dawn so Jeff could get some rest, and decided if we were both up this early Justin and I might as well go to the beach before it became so crowded we could barely move. I have firmly entrenched my lower appendages into the swirling mica before me because I am determined to remain here for an entire hour, despite my son’s penchant for leaving every destination within thirty minutes. I’m exhausted, we’ve made the effort to come here, and I found free rock star parking. Short of a super tantrum, we’re staying a while.
For the moment Justin is enthralled with a faux laptop I dug out of the bottom of the infamous closet, its remembered familiarity exciting enough to captivate him for a time. I have a book in front of me resting on my lap as I contemplate the alien landscape before me, peppered lightly with entire families clearly here to make a day of it, loaded with coolers, beach toys, and tents for little ones to nap. I am reminded by days in the not-too-distant past when our family of three made our annual Jersey shore tour from Washington, how we would spend hours in the morning watching Justin negotiate the waves, then bring him home to rest, and repeat in late afternoon’s more benevolent light. We often had to drag him home then, protesting vociferously at the indignity of being separated from sand and sea. Normally, I could summon up a smile at these warm remembrances, but today I am tired, and I am bitter. I’ve never really been a “look at the bright side” kind of girl, have rather chosen to catalogue, acknowledge, and shelve the unbearable, then reframe the picture. Today, I simply cannot do this. Instead, I immerse myself in misery.
I am aware that Justin’s fascination with his toy may be short-lived, and my respite from parenting as well, so I angle my mind to the upcoming day, weave through the possibilities, none of them enticing. We are supposed to go to my sister-in-law’s for my niece’s birthday party, but the thought of taking a moderately autistic child with grave impulsivity issues to a pool party on five hours sleep is not a pleasant prospect. This is my husband’s family, and as such I will demur to him, and let him keep countenance of Zachary. I will watch over his brother, which will inevitably lead to both of us ensconced in solitary confinement somewhere within the adjacent house, with periodic visits from well-meaning relatives bearing drinks and food for me as I attempt to keep my oldest from destroying my sister-in-law’s lovely home. The other option, of course, is to remain in New Jersey with him, which will result in a half hour swim in our backyard, and hours relegated to our own four walls, alone. After so little sleep, either option is untenable.
Justin giggles next to me at some long-forgotten sound emitted by his plastic babysitter, and I briefly permit my eyes to close as I rest my hand lightly on his arm. My mind wanders to Fourth of Julys past, long, sun-scorched days on the beach, watermelon, ripe and succulent on my tongue, the staccato of fireworks iridescent in their splendor over the calm surface of the Navesink River. I recall the fun of it, the unappreciated freedom, the inherent spontaneity of certain events. In my current life, there remains very little of that now.
And as I embrace my bitterness, allow myself this self-indulgent sadness, I think about how if I wrote this life into a television drama, I wouldn’t watch it for its unbelievability factor. We have just concluded a six week stretch of rotating illnesses, first the children, then the parents simultaneously which was most disastrous, then Justin again. We are cycling through another period of my eldest son’s ramped up OCD, which while not nearly as exhausting as the pinching days, still whittles away at our sanity with slow, deliberate cuts. I cannot bear to explain to an old friend why I cannot carve out an hour to see her this week, why I cannot pick up the phone when I’m solo with both my children, why every moment, every aspect of my life must be planned with the precision of a rocket launch. I simply do not have the energy anymore to convey the complexities of this bizarre existence. Finally, it seems I no longer care to try to define for others this often ridiculous, impossible life.
And I wonder, as children cavort carefree around us, and my son reaches for my next battery-operated savior, if for Justin and me, there will ever truly be an independence day.
July 23, 2010
I slowly pull into the school parking lot looking for the spaces marked “drop-off”, but since I only see empty ones accompanied by a handicapped sign I make a quick U-turn, and wend my way backwards away from the building and the busses. I’ve picked Justin up once before during his first week at his new school so he could get to his swim lessons on time, and although I’ve been told to park in the allotted area in whatever spot is available, I can’t bring myself to rest in one of the handicapped spaces. Even though the staff has given me permission, I know this will be the one day a van earmarked for a child in a wheelchair will not have a space, and it will be my fault. I don’t want to inconvenience anyone, and as one of the new parents in the school, I’m looking to make a slightly better impression than that.
I park, and navigate my way between the staff’s vehicles and the large yellow monoliths which transport the students here. I quickly find myself at the entrance to the school, waiting unceremoniously to be buzzed inside. Within moments I feel the whoosh of cold air as the sliding glass door permits me entrance to the building, and I stop at the desk to sign Justin out. The woman seated there smiles, says “Justin, right?”, and hands me a pen as she simultaneously reaches for the phone to summon my son. I am impressed that she remembers me. I am impressed that she is smiling. Justin, myself, and his entourage of father, grandma, and assorted school officials visited half a dozen potential school placements this spring, and not everyone was so cheerful. Hell, some of them seemed downright annoyed that we were there at all.
I’ve been nervous for him this week, as much is riding on Justin’s successful transition to this new educational facility. My son is what I like to term a “tweenie”, non-verbal but bright, moderately autistic with all the familiar trappings, but affectionate and appreciative as well. I’ve always felt he straddles both worlds, an amalgam of a child both “normal” and on the spectrum. There aren’t many places available that are a good fit for him, fewer that would grant him entrance, fewer still with available openings. We were extremely fortunate that he was accepted in most of the places where he was assessed, so that we ultimately had choices. He has matured greatly in the previous year. I’m certain we would not have had as many options had we been searching last fall.
It was quite strange to bring him into those rooms in unfamiliar locales where he knew no one, where I left him to familiarize himself with alien toys and educational materials, and expected him to “perform” appropriately for an hour at a time. I was invited into each classroom to observe, but I always opted to wait outside as I knew Justin would want to leave after a few minutes in each place, and there would be no cajoling him to stay. Often, as the “interviews” commenced, I could track his progress simply by listening to the timbre of his “eeee” through the closed door. At any given moment, I knew exactly how well he was doing. It is amazing what one mother can discern from a vowel sound.
Today is his fourth day at his new school, the culmination of a week’s worth of bonding to new people, sizing up new classmates, and learning the routines of a foreign placement. He has seemed eager to enter the bus each morning since the first day, when he eyed me warily from his perch in the back of the vehicle, and my heart lurched a little as I knew I could not be certain he understood his eventual destination. He has met me every day this week on the final step of his transport, made eye contact with me, beaming. These have all been good signs that the reports of “he’s a sweetheart” and “no behaviors” are not just the manifestations of a honeymoon period, but the true reflection of my son’s approval of his new educational clime, acceptance of yet another chapter of his life sealed and closed. I know, in his own way, he will miss the staff at his former school, for he knew them all well for two years. He seems to have made his peace with this transition, welcomed the change. I hope, for his sake and mine, that it lasts.
As I set the pen down carefully on the narrow ledge and make my way to the empty chairs placed conveniently for waiting parents I hear my son’s joyful sounds, witness him locate me down the hall, watch his face light up in expectation. I understand, without him telling me in words, that he is happy here, cared for.
And as we both move forward to greet each other, I know in my soul that this will all work out.
July 22, 2010
Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist
Today’s guest blogger is Susan Senator, and I am truly honored she allowed me to share her writing on my own blog. A few months after Justin was diagnosed I began reading narratives of other families’ journeys with autism (at this point I considered memoirs a break from the internet and a welcome escape), and Susan’s debut book was one of the many I chose to read. What made it invaluable to me was that it was the first I could find that related the story of an unrecovered child, and demonstrated a way of life that permitted me to hope that even if Justin didn’t end up in that small cadre of fortunate children, I could still retain my dreams of having a happy family. I am forever grateful for that early insight.
I chose this particular piece because in many respects, I feel my greatest remaining challenge in my daily dealings with autism revolves around my own perspective on it, my need to escape my own head. I am certain my readers will enjoy her writing. Thank you, Susan!
Thursday, April 29, 2010
Getting Out of My Own Way
I was very surprised at how much I enjoyed the afterschool class I teach — little girls’ Middle Eastern dance (aka Baby Bellies). I have not taught BB all year — I got burned out last year — and so I have not been in my stride. Today was the second class. And I was totally dreading it. I looked at the bag of bright colored jingling shmatahs, and I thought, “why did I sign up for this?” I was remembering class at its very worst, when there were about 8 screaming 8 year-olds, running with my veils dragging, and all kinds of school people (kids, teachers, specialists) looking at us to figure out what the heck we were doing. And there I would be, with my hip scarf tied around my jeans and my boots off, trying to teach these girls a few bellydance moves while trying not to perspire too much. Good luck with that, as Jerry Seinfeld would say.
The problem with me is, sometimes I get in my own way by thinking I know what something is going to be like beforehand, and then getting sick of it before it even happens!
To be honest, there are some Fridays where I think, “Argh! I almost forgot, Nat’s coming home for the weekend.” And, please God forgive me, my spirits plummet. I immediately think of how I’m afraid it’s going to be, namely that I will be trapped in the house a lot unless I want to take him out with me. So I make the mistake of feeling like I know what it’s going to be like (living with Nat the way it is at its worst) before the guy even steps off the bus.
There were so many times in his younger life when Nat was so difficult my life felt like a prison. I am so sorry to say that, and I’ve said it before for sure, but it is the truth and that is that. It makes me sad to think that I have felt this way about my son, whom I love probably more than I love myself. But loving someone and living easily with someone are two different things. There was the bloody wrestling to the ground outside of the Stop & Shop. There was the horrible struggle in the subway, holding onto Baby Benji while fending off Nat. There was the clawing of Max’s hand at the Bertucci’s. The screaming, screaming, screaming. The inexplicable screaming at the end of George of the Jungle (probably warranted, when you think about it). The attack while I was driving. The pouring of water in the handbag, the pushing over of little kids at the playground. These things die hard in the memory. It is very unfair to him. That stuff, after all, is the disability. Or, more accurately, the co-morbid conditions that frequently accompany autism. There is no wheelchair, there is no cane, no feeding tube, no weak heart. There is the sudden, scary snap. Intermittent Reinforcement, a most powerful psychological dynamic. Rats.
He’s not like that now. Now there is this fast-moving young man, very content to be himself, anywhere, with anyone. He is game for anything: a trip to the mall, Home Depot, a restaurant, a bookstore. He will try on shoes, try new foods. He will sit and read his social group schedule over and over again, and leap up off the couch when I say, “Okay, it’s time to go, Nat.” He loves visiting people, loves parties, I could go on and on (especially since this is my blog, and not a newspaper or editor I’m writing for). So what, then, is my excuse? Get over it, right?
There is, however, my low-grade anxiety that is always with me, like a small, invincible infection: the worry that somehow, what he does with his time is not good enough. And it is that feeling that I dread on a Friday afternoon. I have pinpointed it as of today, right now. The feeling, the fear, that I am allowing a mediocre existence for my son.
Which is interesting, because that was exactly what made me dread Baby Bellies. For the longest time I felt like I wasn’t very good at teaching because I could not reign them in. I could not get them to systematically learn the moves. I couldn’t get them to pay attention long enough, before they starting pleading for the snack I always bring. I have a memory for the bad stuff, that’s for sure. The long hour of getting pissed off, of hearing my amazing Arabic music, and having no one really listening. Of not knowing what level to teach, what to expect.
Sometime recently, it gelled, however. I realized that I could sit down, pick music at my leisure, and be there for them — let them come over to show me stuff and to ask questions. When I feel so moved, I stand up and start doing the Basic Egyptian (walking with a hip lift, trading off sides), or some zilling (playing finger cymbals). Every now and then a pair of girls will have a duet they made up. Today S and J invented “the tunnel spin,” which is the two of them facing each other with two veils draped over their heads, covering them both, and then they spin apart. The other girls wanted to learn it. Then E starts in with her move, “which is kind of like jumping rope with a veil.” “Just be careful not to trip,” I say. Off in the background, always always where she is not supposed to be — by the desks piled up in the corner — is K, saying, “Pretend I’m…” or “Pretend you’re…” Those were my exact words when I was her age. And I thought, how I would have loved a class like this, with a mellow teacher who never yelled, never shamed anyone, encouraged, taught you when you wanted to learn, and brought in all kinds of dress-up materials. Weird music, but nothing’s perfect.
So I ended up having the best afternoon with the Baby Bellies, staying way beyond the scheduled hour, so they could show their moms what they had learned. R does quite a decent hip-bump sideways walk with double veil (something I don’t think even Petite Jamilla does). K is just in her own world, wrapped in her turquoise like a blue mummy. I just sit and soak it in, a happy sweet-filled sponge. And so, I’m going to go into sponge mode tomorrow when that van honks.
July 21, 2010
I taught for a dozen years prior to entering the domain of motherhood, five years in the District of Columbia Public Schools, and seven in the suburbs of Virginia, which in their own way were just as challenging as the years I worked in the nation’s capital. I was immersed in the lives of children at least 180 days a year, enmeshed in their triumphs, their tragedies both real and imagined, and their stories. I had thought in some respect this proximity to the under eighteen crowd would prepare me to be a better mom, one who would remain inured to the demands of parenthood, perhaps not seduced by the anxiety foisted upon us by the insecurities of my generation. In the end, I was more prepared for both the joys and the drudgery that define raising a family, but alas, I was not immune to the worrying.
The vast majority of my friends passed on their own genetic legacy at a “reasonable” age, producing offspring at thirty or a few short years afterwards. I can easily recall cradling their babies in my arms, listening to their murmured coos or cries of outrage at needs unmet, and I’d wait for my ovaries to rise up in anger at being synthetically suppressed for so long. They never united in protest, and eventually I would return my borrowed infant to its rightful owner without regret. Perhaps it was the whole concept of infancy, of which I’m not particularly fond, or perhaps it was that my brain knew this child was only a “loaner”, and would have to be relinquished eventually. Perhaps I just required that first insensitive ob/gyn to inform us that our chances of having a baby naturally were about as great as having two children on the autism spectrum.
We all know how that turned out.
I will never regret waiting to start my family. I don’t register pangs of envy at the sight of the dewy-skinned moms in Zachary’s pre-school class, and I feel no remorse in knowing that for them the eighties was a quaint era reminiscent of big hair and silly songs, not, in fact, THE BEST DECADE EVER. I needed those years of my twenties (and most of my thirties) to accomplish my goals, enjoy half a career, finish a few rounds of graduate school, and have childless, unfettered fun. I required time to mature enough to be able to put my needs aside to raise a disabled child without resentment or regret, at least on most days. I needed to learn how to feel more confident in my ability to mother my own offspring, to diminish some of the “surprise factor”. Those years, particularly that exposure to children, accomplished these goals for me.
While I did feel more prepared for what lay in store for me after giving birth, even after accepting the news that my child’s brain chemistry is forever altered, there was one surprise I did not, could not anticipate. I could never have known that the action of my oldest son pulling me down for repeated kisses of gratitude coupled with eye contact, or my youngest’s gleeful cry of “mommy” after a few hours of separation, could greatly eradicate my needs, my losses, my angst. I wish I could have known how fulfilling those moments could be, how they heal, temporarily ameliorate the sting of those wounds entirely. I wish I could have known how watching my sons smile and recognizing I played a part in the joy emanating from their countenances would be more fun (at times) than shopping, or a day at a really good spa. I wish someone would have told me, but perhaps that knowledge can’t be truly conveyed until it’s experienced.
July 20, 2010
Today I’d like to extend my heartfelt thanks to Lauren from our local Challenger program, a brave individual who has made it through six consecutive hours of swim lessons with my oldest son and remained both alive and positive throughout the entire ordeal. Once Justin accepted that she wouldn’t let go of him, Lauren was able to convince my son that floating on his back isn’t necessarily evil, that kicking is both permitted and desirable in chlorinated water, and that submerging one’s face in the pool is not synonymous with death. He’s not swimming yet, but I have a feeling eventually we’ll get there, and Lauren is game for however long it takes. Thank you both to Lauren and the Challenger program for providing this opportunity to kids with special needs!
July 19, 2010
We’ve finally made it, our caravan of three vehicles transporting two autistic children and four pairs of adult hands, the requisite number required to make certain both my boys can participate in Parents of Autistic Children’s (POAC) annual surf event at the Jersey shore. I am thankful we have indeed arrived, as we had previously endured a brief skirmish with Justin regarding the appropriateness of his wearing Tivas to the beach, and eventually, to my relief, I won. I simply refuse to take any of my progeny to the ocean clad in socks and sneakers. I am a Jersey girl myself, and I have my standards after all.
After navigating our way cautiously across the bustling thoroughfare of highway 35 we arrive safely with both children in tow, register, and settle in to dispense with the fifteen minutes we have left before my oldest son’s scheduled surf lesson. Justin unerringly finds the strategically placed food offerings that so entice him, and hunkers down at a picnic table to sample a small piece of submarine sandwich. I actually join him as I remember I have unwittingly forsworn lunch today, a minor tragedy I pledge never to repeat. Life is difficult enough without having to endure hunger pangs as well.
After compulsively checking my watch a dozen times to make certain we won’t miss our appointed hour, we clean up our residue and herd my sons down to the waiting shoreline, where I see the Brick lifeguards fully engaged in the job of ushering autistic children out to sea. There are makeshift lines in evidence for parents to stake their claim for the next surfing team, and I bark out orders to my family members to keep the kids alive while I wait to attract someone’s attention. Zachary has to be kept from wandering off, Justin needs peace and quiet to finish his sandwich, and of course, there are photo opportunities that cannot be missed. We are a well-oiled machine, primarily because I am bossy and have instructed everyone as to their job requirements prior to leaving the house. Each child has two adults assigned to him, as I am still wary after the recent near debacle of my not-so-great adventure with Justin. I am determined to leave today with both children alive, and at least one joyous photo of each recorded for posterity.
Clearly, I have ridiculously high standards for happiness.
Eventually I make eye contact with a strapping young man I would have deemed gorgeous twenty years ago (and still do), and ask him if he and his surfing lackeys can take my son out after they finish with their present charge. He smiles and responds we are indeed next in line, and I look back to gauge exactly how much sandwich remains on Justin’s styrofoam plate. It looks like enough to last the duration of the other child’s surf lesson, and I breathe a slight sigh of relief at that knowledge. Justin seems tired today, has in fact been conscious since long before dawn and has just completed his first day at his new school. I am confident he will not be in the mood to wait for anything. I am adamant that he at least try this sport, as he was fairly reluctant initially to mount a horse eight months ago, and obviously that has evolved into a beloved and preferred activity. I never know what will eventually click with him, and as his interests are limited, I want him exposed to as many things as possible. Besides, we reside ten minutes from the beach, and I practically grew up on one. It is impossible for me to believe he won’t eventually at least tolerate the roller coaster of sand and surf.
Eventually the little boy ahead of us relinquishes his viselike grip on the surfboard that has afforded him an unparalled ten minutes of fun, and he finally plants his feet on solid ground and disrobes from his life vest. The head lifeguard calls out to me that it’s Justin’s turn, and I wheel around to ascertain if enough of his Italian sub has been devoured for him to transition to a new activity. I eyeball the messy remains of the sandwich, and decide he has indeed ingested enough to pull him away from his secure spot and attempt the inherent treachery of the ocean. I am certain he will not be thrilled with my request.
He reluctantly but dutifully hands his plate to me as I knew he would, my son who always strives to be my good boy. I take his hand and walk him to the waiting cadre of surfers, and as we approach the individual holding the life vest I can see in his eyes he remembers this event from last year, and is not impressed. I’m wondering if we will be able to accomplish our goal after all.
But today has been a good day for Justin, and although he is not enthralled with the concept of what is about to transpire, he complies to my whim of ensconcing him in his jacket, and follows me, albeit reluctantly, down to the water’s edge. I instruct his new friends to simply take him in and do their best to encourage him to at least lie on the board, because often Justin responds to a situation much better after the preliminaries have been dispensed with completely. Two swarthy young men carry him in while the remaining guards transport the board, and they quickly attempt to situate him upon it through the roiling surf. They try several times, but my firstborn will have nothing to do with this alien, elongated piece of fiberglass, and instead clutches for dear life the closest human he can find. I am amused, that of course, it is the pretty girl. My son has his standards as well.
I shout to them to return him to me, and they quickly comply. Justin looks relieved, pulls my hands to help him shed his equipment, and unerringly picks his way among the crowds to his waiting snack. I thank the group profusely, and they murmur somewhat dejected apologies, which I quickly refuse. I tell them we’ll try again next year, and with the resilience of youth, they accept this promise, and move off to the next child who looks far more eager to attempt to master the waves. I turn back again, make certain Justin is still consuming his prize, then allow my gaze to wander a few feet forward to a small crowd encircling a stationary surfboard with a small child upon it, one who is responding to a cry to “hang ten” with a semi-crouch and airplane arms, and eyes making certain everyone concurs that he is the main attraction.
That child happens to be mine.
It appears that my three-year-old, the one I didn’t even bother to sign up for this event due to his fears that the ocean is “too loud”, has appropriated his own board and team to accompany it. I stride rapidly over to the scene to make certain someone in my family is capturing this on film, and arrive just in time to hear one of his newfound friends ask him if he’d like to go surfing in the ocean. He replies with a resounding “yes!”.
This is the child, who although light years milder in his autism affliction than his older brother, is still plagued far more seriously with sensory issues. He still regards the vacuum as a threatening ogre, reviles sand between his toes with the same vehemency as his father, and will permit only two different textures of food items to grace his palate. His issues have slowly begun to resolve themselves with time and maturity, but nowhere in my repertoire of “he must try this anyway” did I include a rendezvous with the sea. To date, he has refused to even immerse his toes in the receding surf, and recoils from its vastness even while cocooned in the safety of his mother’s embrace. His desire to attempt this on open water frankly stuns me.
And I could not be more thrilled.
Zachary is asked to stretch himself out on the board and grip the sides tightly, a command with which he willingly responds. He is still so light that his surfing cohort can whisk him into the sea by simply raising him to shoulder level and simultaneously battling the waves, all with my smallest son staring out to the horizon, impatient for the adventure to commence. I whip off my beach dress and rush out after them, not because I fear they’ll lose him to this monolith of salty brine, but from the desire to be in close proximity should he seriously regret this decision. I immerse myself for no reason. He doesn’t even notice me. He is simply enthralled with the ebb and flow of tide.
I am within earshot of hearing him politely decline to sit or stand on the board, and his refusal to comply is irrelevant to the joy and intense concentration evident in his countenance. He has conquered his fear of the ocean, and I have no doubt in the next year or the one following he will eventually be obeying the tide’s majesty, and gliding safely into surf’s edge. I watch him, toes scrabbling for purchase on the slick surface of the board, tiny fingers wrapped securely around its edges, face redolent in its awe. He is magnificent.
He does not realize what a gift he has given me today, how these instances sustain me through the terrible times, or even simply the sad moments, those instances most often accompanied by self-doubt that I am doing anything, everything, I can for these boys. I wish I could explain to him what this means to me, but he is three after all, and would simply reply “mommy is happy”.
And he would be correct. She is. And as I turn toward shore to watch my family rejoice at his bravery, I feel myself buoyed by a wave both of water and sheer contentedness, and for that moment, I am healed.