April 8, 2012
“Raising Autism”- a POAC Autism Services Fundraiser
Last week some staggering statistics were made public in a report from the Centers for Disease Control and Prevention (CDC), a report that discussed findings regarding the prevalence of autism in fourteen states, as well as nationally. The national reports showed an increase in autism diagnosis of 78% when comparing a 2012 study to one conducted just five years before in 2007, a fact which is overwhelming in and of itself. What concerned me even more however, were the statistics for the Garden State.
According to the data, one in forty-nine children are affected in New Jersey.
For girls, one in one hundred and seventy-two are on the spectrum.
For boys, it’s one in twenty-nine.
Yes, I said one in twenty-nine.
There are a myriad of debates raging in the autism community, ranging from such topics as causes and treatments, to whether or not this increase is real, or just a result of pediatricians having access to better diagnostic tools. It may take decades to solve the more complicated puzzles. Some questions regarding the disorder may never be solved at all. But to me, one issue is perfectly clear.
All of us who love someone with an autism spectrum disorder have to do our part to help if we can.
There are hundreds of autism organizations now in existence, all of which contribute to the community at large, many with their own special niche. One that happens to be in our backyard, and has made an indelible difference in the lives of teachers, law enforcement officers, and so many Garden State families (including my own), is POAC Autism Services. POAC is located in Brick, but offers free trainings and workshops all over the state, educating those who love and/or work with individuals with autism on how best to serve them. They’re a phenomenal organization headed up by Gary Weitzen, Executive Director, and for over a decade have been responsible for improving the lives of many children and adults with autism.
Two of those lives include my own kids.
In a few weeks I will be producing my play, “Raising Autism”, which will act as a fundraiser for this wonderful agency (yes, this is a shameless plug to get my readers to buy tickets, but they’re only $10, it’s a cheap evening out). For the past few months I’ve been harassing relatives and friends, and come close to approaching strangers on the street (I’ve stopped short of that) in order to get a good turn-out. I’m hoping we are able to raise a couple of thousand dollars for POAC, enough to facilitate a few more trainings. I also hope there’s some money left over to create those all-important weekend activities for families, activities which function as a safe haven for our kids, a place where they can be who they are with beautiful abandon.
Those events are a haven where their parents can feel free to be who they are as well.
The play chronicles the lives of three very different women raising four children with autism between them, kids who fall on every part of the spectrum themselves. At times (at least I’m told), it’s a humorous look at some very difficult situations. I’ve also been told (with sodden tissues as evidence) that it will break your heart a bit, because it’s an honest look at the challenges many of us face with our children on a daily basis.
In other words, in “Raising Autism”, I say it like it is.
While I hope the play brings in a lovely chunk of money for POAC, I also hope it delivers more than just a nice bundle of funding for their endeavors. Of course I also wish it will act as a vehicle through which awareness is raised, which to me is just as important as soliciting donations. Last, I have one final wish for the play as well. To all of those attending, I hope hearing these women’s words will be both cathartic, and serve as validation for our children’s struggles, as well as our own.
It was definitely cathartic for the woman who wrote it.
“Raising Autism” debuts April 21st at Brick Township High School, and on April 28th at the Jersey Shore Arts Center. For more information please see POAC’s website at: www.poac.net
Thank you for reading this, and hope to see you there!
September 14, 2011
Someone Special Needs You (SSNY)
When my family returned to New Jersey from Washington five years ago, I knew our daily lives would be taking a very different turn. We traded the Smithsonians for the beach, the monuments for proximity to family, and although at times I truly miss our former existence, there is no doubt in my mind it was the best choice for Justin. For one thing, although the school system where we once lived is nationally recognized, my eldest would never have merited an aide during the early days of his education. I truly believe that having this one-on-one experience in his first years as a student in New Jersey was absolutely integral to his development, and instrumental in the creation of the happy boy I call my son today.
Our family has also benefited greatly from our experience with the DDD (Department of Developmental Disabilities), an agency which affords us the gift of thirty hours of respite care a month, providing me with an extra pair of hands that often enables me to leave the house with both of my kids in tow. There have been other benefits from our relocation as well, including far greater access to social opportunities for the boys through several different organizations, specifically POAC (Parents of Autistic Children), and SSNY (Someone Special Needs You).
I’ve written before about our participation in SSNY, from Easter Egg hunts to Halloween activities, as well as visits from Santa, and carnivals. Vince Scanelli and his wife Gina are the co-founders, and their mission is twofold. First, they provide a monthly arena where children of all ages and disabilities can convene to do crafts and various activities with high school buddies. These teens are carefully selected to pair with the children, and provide them with a wonderful opportunity for friendship. Justin has absolutely reveled in the experience over the four years we’ve been attending the meetings, changing from a child who wanted nothing to do with crafts or teen-agers, to a boy who can’t wait to assemble a leprechaun and hug a pretty girl. He’s grown to love these nights, and in keeping with family tradition, I’ve begun to bring Zachary too.
The second part of their mission includes the creation of a group home on a farm, a topic near and dear to my heart. SSNY has been afforded the gift of twelve acres of land in Colts Neck, and as soon as the “i’s” are dotted and the “t’s” are crossed, construction will begin. It will be a working farm for adults with autism, and will include several green-houses as well. Vince wants to have sheep, chickens and alpaca in abundance (I admit, I had to google the latter, I need to brush up on my farm vocabulary), and hopes to provide a safe and productive atmosphere within which a number of fortunate adults with autism can live and thrive, together.
Amen to that.
SSNY is always on the look-out for new participants for their monthly sessions, and they meet the third Thursday of the month at the Colts Neck Reformed Church, from 6:30 to 7:30 in the evening. They also greatly appreciate donations of any sort toward the creation of the group home. Trust me, it is a daunting task to bring this kind of wide-scale dream to fruition. As Vince and his wife are two of the kindest, most generous parents I have encountered on my New Jersey autism journey, I truly hope they succeed in reaching their goal.
If you’re either interested in attending the crafts sessions or volunteering/donating to the creation of the group home, please click on the SSNY website, and I thank you for your time. The first get-together is this Thursday, 9/15, and all families are more than welcome to attend. Hope to see you there!
Colts Neck Reformed Church
72 County Road 537 West
Colts Neck, NJ 07722
6:30 to 7:30
Third Thursday of the month
Colts Neck Journal article (information on the group home, pages 37 and 38)
February 25, 2011
In the Spotlight
“No Justin, we have to wait!” I implore my oldest child, as he rejects the juice, popcorn, DVD player and toy I offer him in rapid succession. He is angry at me because I’m refusing to cater to his desire to visit the snack bar located in the middle of Fun Time America, which until a few minutes ago had actually lived up to its name. I’m summoning mean mommy because the line to acquire overpriced, undercooked carbs is thirty deep in there, and our chances of being seated are about as great as me being granted more than five minutes to myself at the end of this elongated holiday weekend. By accident Justin wrenches my wrist, and I feel my capacity for patience, already as thin as my annoyingly fine hair, completely snap. It’s been four consecutive days with children, I have a sinus infection that’s functioning as a bronchitis chaser, my husband’s away working in DC, and it’s winter.
Enough said.
Despite the circumstances, we’ve had a great time through the grace of POAC (Parents of Autistic Children), who have arranged for families with offspring on the spectrum to have the run of the place from 9-12 today, the last day of our celebration of the presidents’ lives. Since the weather out there is as pleasant as a trip to the DMV at the end of the month, I am especially grateful that we have somewhere to go this morning. The thought of schlepping Justin to our local arcade ONE MORE TIME is making me faintly nauseous, and this time I can’t blame the Zpack for my unsettled stomach. POAC, with their frequent family events, has once again saved my sanity.
I thought I’d discovered every remotely palatable venue for fun since we moved back to the Garden State five years ago, but apparently I missed one, and I’m thrilled to have a new option for the kids. Yes, it will cost me roughly a month of Zach’s college tuition every time I venture here with the boys. True, particularly at this time of the year, it’s a teeming germ fest. And yes, since Justin will force me to ride the spaceship simulator with him every time we cross the threshold, during each trip I will want to vomit at least once.
Again, it’s winter in central Jersey. It will be completely worth it.
We’re at the end of the event now, which for us has lasted an uncommonly long seventy-five minutes, a record with the McCafferty clan. Gary Weitzen, the founder of the non-profit, has asked me or my mother to speak for a POAC PSA before we leave, and since leaving my mom alone with two autistic kids under the age of eight in a crowded indoor amusement park is questionably a criminal offence, I’ve volunteered to take one for the team. The truth is my mother, with her thirty years in special education (culminating as it did in a stint as assistant superintendent in a large school district), will be far more compelling on camera than her congested housewife daughter. Within thirty seconds of waiting outside the staging area however it’s become apparent I’m going to lose a child if I don’t get some help, so I send Zachary inside to watch Grandma become a “movie star”. I then attempt, through my sinus haze, to conjure up productive ways to keep Justin calm for five more minutes.
All I can come up with is a trip to the bathroom. So much for creativity.
We pay our tribute to the questionably clean porcelain god (wipes, thank God for wipes!), and round the corner to what I hope will be a concluded taping. My mom has nailed her role on the first try, and since Justin is eager to enter the room and play with/dismantle the camera equipment, I allow him to barge inside. He actually becomes shy when he enters, and I quickly take the opportunity to seat him so I can chat with one of the volunteers, a POAC member I know well who’s filming the takes. Apparently Zachary has been enthralled with both watching Grandma speak “live” and seeing her simultaneously through the view finder, and in the spirit of the moment, the camera man asks him if he’d like to try it too.
Of course all I can think is “crap, he’s in a gray sweatsuit” (Toddlers and Tiaras’ moms have got NOTHING on me).
He lets himself be gently placed on his mark, the toes of his Spiderman sneakers jutting ever so slightly over the peaks of the black “X” criss-crossing the hardwood floor. Our filmmaker asks him to look into the camera, smile, and repeat several short taglines that will add a personal touch to statistics and facts, accomplishments and contact info that are the meat of a PSA. Since Justin is seemingly captivated by the unfolding events I walk over to the tripod and stand in close proximity, the better to encourage my budding star. Zach is asked again to look into the lens, and with enthusiasm utter four words I longed to hear eight years ago when his brother was first diagnosed, and our family was not as yet part of a community. He looks directly into my eyes, and repeats the words in a voice so soft and so utterly unfamiliar, I fear he’s spontaneously taken ill.
I smile at him encouragingly, and tap the black cylinder he should be regarding instead. I clear my throat and say in the best mommy voice I currently possess, “Louder Zach, you can do it, on the count of three!”, a command that’s a frequent pre-cursor to time-out, and one with which I’m certain he’s comfortable. I watch his entire body tense with excitement, and this time he stares into the correct spot, exudes a smile that engulfs his entire face, and repeats in a voice overflowing with enthusiasm, “YOU ARE NOT ALONE!”
This is my baby, who two years ago had a repertoire of five garbled words, found eye contact painful, and seemed to exist in a world of his own making. He is now standing still, following directions, and repeating entire sentences in an appropriate context. It is clear he is even having fun, and I watch contentedly as our director feeds him his last phrases. To say I am overjoyed watching him repeat his lines verbatim would be the glaring understatement of the year.
He nails them all, and asks for an encore.
I gently derail his dreams of fame and fortune and tell him it’s time to go home for lunch, and my mom and I begin the process of packing up children and gear to make the long trek to the car. Gary thanks us profusely, but I assure him it’s been our pleasure. Truly, in addition to training thousands of police officers, teachers, and bus drivers in our state, this man and his vision have also provided families with years of events where their kids can let loose, and just be themselves. While I deeply appreciate the former, the latter has proven priceless to this family. A few minutes surviving Justin’s irritability from denied access to carbs is the least I can do for them today.
Soon we’re buckled into our seats and navigating our way back to the parkway, Justin inhaling a juice, my mom and Zach engaged in a discussion about the current existence of dinosaurs. I am left to a few peaceful minutes with my thoughts (hallelujah!), primary of which is profound gratitude that I have found this organization, as well as the people encompassed within it. I know not everyone has a POAC in their backyard, and I never had anything resembling this non-profit during those long years in DC either. Perhaps the one thing I’ve learned however, the one universal I’ve discovered for all families in the almost-decade I’ve been dealing with autism, is this: make your “autism friends” wherever you can. Whether it’s a parent group, a mom in your special ed PTA, or a person you meet online, someone is out there to guide you and support you. Forge your connections whenever it’s possible, and never let go.
In the precious words of my youngest child, you are not alone.
For information on how you can volunteer for POAC, or just participate in their events, please visit the website at: www.poac.net
February 10, 2011
Sanctuary
It’s a frigid Monday night in central Jersey, and the staccato crunch of heels on crusted pavement is keeping time with my racing heart as I power-walk to my intended destination. I’ve managed to escape the dinner hour to return “home” for a meal with two dear friends, and frankly I don’t want to miss a minute of it. I literally had to peel Zachary off my body as he begged me to “please stay, DON’T GO ON VACATION!!”, knowing full well that telling him mommy only visits the scene of her childhood approximately four times a year will carry no weight with him at this moment.
Through the wonders of that 80’s channel on Sirius radio, I’ve managed to shed the images of the resulting carnage I left behind for Jeff and the sitter (Zach melted into a puddle in the foyer, Justin comprehending my departure and making a dash for the door to reign me in). After forty-five minutes of driving I’m finally happy, and as I make my way down streets whose highlights used to be a five-and-dime and a record store, and are now redolent with chichi restaurants and high-end couture, I’m committed to remaining that way for the rest of the evening.
As God is my witness, I will have fun for two consecutive hours even if it kills me.
Soon after Jeff and I relocated to Jersey after our fifteen year stint in Washington, DC, I threw a rather small “social net” out to women whom I’d run into at our last reunion who’d remained in the area, women I had been friends with, or just liked. I kept our dinner small because I live the better part of an hour away, and as getting to the ATM on some days has been a struggle, I knew I’d have limited opportunities for socializing. So, one cold winter evening I co-hosted a night out at a local bistro with a dear friend, and waited to see which relationships would be reconnected. Our dinner guests were, and remain, lovely people, and a number have become email “pals”, or the occasional lunch date since that time. One of those women I’m dining with tonight, was someone I was close to in my youth but had lost touch with after graduation, and it’s been a joy to reforge that bond with this wonderful “girl” as we catch up on the last twenty-plus(!) years we’ve been apart.
My other dining companion from that long-ago meal I’ve known since we were fourteen, when the dark blonde braids of her hair graced my desk in English class, and we desperately tried not to get caught passing notes (remember note-passing?) as we debated the merits of one boy or another. She remains strong, smart and beautiful, and best yet shares my somewhat unique world view and sense of humor. I knew within months of meeting her we’d be friends for life. This girl would eventually be a bridesmaid.
And fifteen years later, she was.
I reach the cozy restaurant that has become “our spot”, exchange hugs, shed coat and gloves, and gratefully slide into my seat. It’s been a few months since our last communal repast, and we have to discipline one another to cut the chatter long enough to order since we’re all starving. One friend has just had a baby, and we pause in our not-so-worldly discussions long enough to pay due to her little girl’s beauty, then settle in for bread and the wine she always (thankfully!) remembers to bring to this non-licensed establishment. We quickly fall into a rhythm, conveying moments from our lives punctuated by the light laughter of friends who know one another well. We discuss our children, our spouses, our favorite reality tv shows, and even make a brief foray into world affairs (I’m so proud of us). It is a safe place for we three women, this venue where we can share our lives, laugh at the absurdities, and best of all, trust that none of it will ever leave the table.
It is sanctuary.
All too soon the evening concludes, as the weight of laundry, husbands and child care summons us back to reality, and I find myself embracing my companions goodbye, with the promise of another evening to come in the not too distant future. I settle myself in for the fairly long drive home, and smile at the fact that I’ve indeed escaped the daily confines of my life for just a moment, have had a meal served and cleaned up for me, enjoyed the pleasure of discourse involving multi-syllabic words. I’m reminded how imperative it is to have these evenings, to walk out of my life for just a little while. No matter what is going on at home, it’s still important for me to have some fun.
As a great “Wham” song reverberates around my car (are there any bad “Wham” songs, really?) and I make passage to the Garden State Parkway, I am reminded of several wonderful posts I’d read recently from two of my favorite bloggers, a diary of a mom and Professor Mother Blog, who recently made impassioned pleas for all of us to address our emotional needs, to seek the help we might require as we dance through the difficulties of raising “different” kids. The essays were exceptionally written and translated to all women, both those encumbered with the blessing and burden of “labeled” children, and those without. I personally forwarded them on to a few friends, none of whom happen to reside with autistic offspring. They were timeless, important pieces, and I hope you have the chance to read them for yourselves.
Their words transported me back to a time when I was mired in the mess of it all, the year leading up to Justin’s diagnosis, and the one following Zachary’s. The days where despondence seemed our family’s version of “normal”, where the act of reaching out for comfort or solace was almost harder than simply embracing the depression. I eventually did seek help both times, through several parent support groups, via the purge that was writing my manuscript, and the relief of discussing our day-to-day travails with friends experiencing our version of family. I finally received what I needed, but first had to claw my way to a place where I had the energy to do the work necessary to once again render me happy, to even want to do the work to return to that place. For a time, I was shattered. I knew, in order to be the mom my children needed, I’d have to summon the energy to refashion the pieces of my life into some semblance of a cohesive whole, albeit a changed one.
And after a time, I did.
I’ve learned to live in that reconfigured world, where most days seem filled with light rather than shrouded in darkness. I dwelled in that post-apocalyptic place for a while however before I realized something pivotal remained absent, some core part of me still denied. Eventually, although it took a while, I figured it out.
Girlfriend needed to have some fun.
And although I couldn’t see it at the time, that desire for frivolity is the equally important twin to seeking solace, the codicil to regaining that precious mental health. I started out slowly. At first it was a phone call here or there, then a short lunch. Sometimes it was simply a trip to the book store, a frappacino as my silent guest, the wanton escape of a well-written novel in my tired hands. In DC I eventually reestablished connections I’d let falter, and here in Jersey I’ve forged new friendships, created a new kind of life including forays, although brief, into fun. The truth is, no matter what our kids are going through, no matter what issues are transpiring in our homes, one thing is certain. This is the only life you’re going to have. Carve something pleasurable, no matter how small at first, or how difficult it is to do, back into yours, for you.
When you’re ready, and you’ll know when, just try to have some fun.
February 2, 2011
Yes Virginia, There Might be a Santa Claus
Back in 2004, when my husband, son and I were residents of the great state of Virginia, our eldest child Justin was diagnosed with Pervasive Developmental Disorder. He was only seventeen months old, which at that time was incredibly early to be identified, a fact which every professional we encountered told us was strongly in his favor. No one was suggesting he’d recover from autism, but the point that was brought home to me on every single one of our myriad doctor’s visits was this: the only thing the multitude of autism professionals can agree upon is that early, and quality, intervention can make a huge difference in the progress these children make throughout their lifespan. I remember even through my despair being thrilled we had figured out his issues so soon in his young life, and being certain that help, indeed, would come. My mom had told me how comprehensive New Jersey’s therapeutic services were for the under three set, and I was certain, since I lived twenty minutes from the seat of our nation’s government, that Virginia would afford us similar assistance.
Soon, it became clear, I was dead wrong.
After our initial consultation with Virginia’s Early Intervention assessment team, we were told the sum total of therapeutic hours we would receive monthly would most likely number six, and if we pushed it, possibly eight. Occupational therapy services were offered, as were speech. Applied Behavioral Analysis hours were not considered, as Virginia’s Early Intervention program does not recognize a diagnosis of autism, even though said therapy addresses the core deficits of the disorder.
Although Fairfax County had made the magnanimous decision to accept children into their pre-school autism program the fall after they turned two, age-wise, Justin wasn’t yet eligible to enroll. Frankly, that meant any type of help he would receive would have to come from me. It meant making my temporary leave of absence from teaching permanent. We had to hire a Board Certified Behavior Analyst to come in twice a month and train me and our therapy team, all to the tune of $1200 monthly, a sum that did not include what we also paid our private therapists. The hours that Early Intervention offered us were a joke. I had a year left until Justin could enroll in school, into a program I was not certain would ultimately be able to meet his needs. My husband’s insurance covered none of our private BCBA’s inordinately expensive, yet necessary, instruction. We were existing on one salary.
In short, we were screwed.
Eventually, the lack of Early Intervention services, coupled with the fact that spending thirty hours a week trying to teach my own child how to sign for “ball” is insane, propelled us to relocate to New Jersey. Within weeks, we were granted almost twenty hours a week of a variety of therapies, including the Applied Behavioral Analysis hours so crucial to his development. I remained present for all of those hours until he began school in the fall, but throughout this period I always had another adult with whom to share the workload with Justin.
Honestly, during those months I felt like I was on vacation. A really good childless, island-hopping, pretty drink-profuse vacation.
Ironically, not too long after we moved back here, some amazing parental advocates convinced New Jersey to pass autism legislation, which has enabled many families to seek relief from their insurance companies. Services such as speech, occupational therapy, physical therapy and those gold-plated ABA hours are now being covered at least in part if you’re a subscriber to certain insurance policies. The legislation hasn’t fixed everything. There are still many families whose insurance providers render them ineligible to this legislation, many of whom are paying for those services anyway, emptying retirement funds and taking out second and third mortgages. Although we are quite fortunate not to fall into the latter category, we still cannot pull from New Jersey’s autism legislation trough. Even though we reside in the Garden State, my husband’s insurance coverage originates in Virginia, and as yet, comprehensive reform has not passed in Richmond.
Until, hopefully, today.
On January 27th, Virginia’s House Labor and Commerce Committees passed HB 2467. Virginia’s Senate Finance Committee is scheduled to hear their already passed version of the senate bill early this month. Today, on February 2, 2011, after many hours of diligent, behind-the-scenes work by politicians, parents, and advocates, Bill 2467 will finally grace the floor of the house as well. Even if this bill is signed into law I’m not certain it will help us financially, although it might assist us in mitigating the costs of Justin’s weekly speech therapy sessions. It will be months before the bill becomes law, and probably many more months before Jeff will be able to weave his way through the morass of his new insurance company’s rules. Ultimately, a pass in both the house and the senate may not benefit us at all.
But there is no doubt it will bring a sigh of relief to a multitude of families residing in what I consider to be my adopted state.
I have to share that I don’t ask the universe for much. I am, however, keeping all appendages crossed that this bill, this long-awaited piece of legislation, will pass. I’m hoping it becomes law, because children with autism are being diagnosed earlier and earlier, sometimes years before their public educational system is required to accommodate them. I’m eager for this legislation to pass in Virginia so that children can have access to services when they need them, not just when they’re deemed eligible for school. For once, I’m actually praying for the words on this bill to transform into law so that no other family will share my experience of those long, isolated fifteen months, endured just minutes from our nation’s capital.
I hope you will join me in thinking positive thoughts, so that for Virginia, there may indeed one day be a Santa Claus.
December 16, 2010
Stand Up
We were running a few minutes late (as usual), but my husband assured me as I frantically attempted to find the intake number for the hospital that we’d make the appointment in time, and of course, he was right. We slid into the parking lot with two minutes to spare, and I barked out orders (again, as usual), telling Jeff to grab the boy while I snapped up the gear and raced to the sign-up desk. There was a little validity to my anxiousness, as I’d been instructed on the phone that the first visit required a myriad of forms and questions prior to seeing the psychiatrist, and it was imperative we be punctual. I sprinted up the stairs of what appeared to be a restored mansion and waited impatiently behind another mom who also appeared to be out of breath, and allowed myself a sigh of relief when I informed the secretary of our appointed hour and not even an eyebrow was raised. I’ve learned, after dozens of such visits with my two boys, that the person at these appointments whom you really want to like you is always the secretary.
We’ve schlepped up to north Jersey on this uncharacteristically cold November day because we’re tentatively shopping for a new psychiatrist for Justin. Jeff and I are hoping to find someone not only to dispense and advise us on medications as our current one does, but we’re also eager to think out of the box a bit, and align ourselves with a practitioner who may even offer to enroll our son in some experimental studies some day. It’s not that we don’t like our current therapist, although we’ve had a few issues in the past that have since been resolved (see Summer Solstice for our mental health professional back-story). I had my hissy after the debacle of the “there’s no waiting area for your autistic son, try the hallway” and the situation has since been resolved, including both a shorter wait-time for our appointments and an enclosed and safe area for us during the interlude between patients. That one particular afternoon made me long to ask our shrink for my own Xanax prescription, but the situation was subsequently addressed to my satisfaction, and I’m a big enough girl to forgive and move on.
Sometimes.
That day did make me think however about alternative practitioners, about the wisdom of not remaining with the “status quo” solely because our patient-doctor relationship was comfortable, and equally importantly, because I knew how to find the psychiatrist’s office. Despite the five thousand other things my husband and I need to accomplish during the day I asked him to conduct a bit of research for me this summer, and in July we placed ourselves on the waiting list for one of the more prominent hospitals, and settled in to wait until November for the call that would let us know the date of our pre-Christmas appointment. Here in Jersey, any professional for autism worth their salt requires approximately a six-month wait, and although neither my husband nor I was really jazzed up about wading through two more seasons of Justin’s penchant for tearing things to shreds or flushing expensive game cartridges down the toilet, we knew we really didn’t have an option. Hell, it seems as if every other kid in the Garden State is on the spectrum, and there’s only so many doctors to go around. Jeff and I accepted we’d have to suck it up and wait.
When Thanksgiving came and went without a call however I urged Jeff to phone them again, and after another week and several messages my husband finally made contact. It appeared that after five months of “patiently” waiting, almost half a year of watching my son (and my toilet) suffer despite our behavioral interventions, that the intake people had forgotten to place our names on the list. They had a record of our call, validated our communication with them in the summer, but wouldn’t honor their mistake. We were now looking at an appointment in March at the earliest, with the possibility of an earlier visit if there was a cancellation. This meant my boy would be waiting at least eight months to see this new doctor through no fault of our own. Since it was now almost December, we knew even if we contacted another organization we wouldn’t be gracing its doorstep until summer. Frankly, unless we wanted to try another state, which was just a wee bit impractical for follow-up visits, they had us over a barrel.
To say the least, mommy was not pleased.
In the distant past I would have let this situation go, particularly if it only involved my physical or mental health, would not have felt inclined to make any waves. But this was my child’s health at stake, his well-being compromised because of simple human error. I was aware I might not be able to alter what had happened, but I also knew I just couldn’t sit by and not voice my complaints (okay, outrage, let’s be honest here). Somebody had made a mistake, and come hell or high water, this doctor was going to find out about it. Heck, maybe she’d even venture to her office on a weekend for us to make nice.
Sadly, these thoughts are what comprise my fantasies these days.
So, I called. I got her assistant’s extension, was placed into voice mail, and considered hanging up and waiting until I could speak to a “real” person. Since our past history with this establishment hadn’t been so stellar with return calls I realized I might be the one required to do the dialing, and given my limited capacity to remember anything these days, I knew this might not be the best choice to make. I waited out the recording, and after five thousand instructions from the well-modulated voice of our psychiatrist’s right-hand “man”, I finally heard the dulcet tone encouraging me to leave a message.
And, I did.
I used my grown-up-but-respectful (believe me, I’ve had to practice it) tone of voice, and let the powers that be know the specifics of our problem, and that the error had been on their side, not ours. I informed them that my child was suffering, that even if we went with another agency we’d never see a professional before the end of the calendar year, and that was on them, not us. I asked the void of voice mail to come up with a solution to the situation, sooner rather than later, and let them know that an appointment at Easter was not an acceptable way to rectify this error. Finally, I told them I expected a return call in a timely fashion.
Believe it or not, I got one the next day.
And with a few minor miscommunications later, one in which for two minutes I contemplated the possibility that Justin had missed an almost an entire day of school just so his mommy could drag him to the wrong facility, we did indeed get to see the good doctor, actually a month before we were originally supposed to be seen. She was lovely, believed in waiting rooms AND toys in her office, and gave us two of the best articles outlining the myriad treatments of autism and its ancillary effects that either Jeff or I had ever seen (and yes, we read a lot of them). She had a sense of humor (bonus!), and was compassionate, and perhaps most importantly had a satellite office located no further from our house than our previous mental health professional. Our new psychiatrist even got us out of there in time for lunch at Applebee’s.
In short, she was a winner.
There is a lot of talk about “gifts” with autism, both for our children and for their families, and far more discussion about whether or not the concept is valid or completely bogus. Believe me, there have been many days (and nights) I’d happily put anyone in a choke-hold who proffered up the idea that any of this was “a positive”. I’ve found however that fighting for my children, navigating the labyrinth of IEP meetings, Early Intervention assessments, after-school programs and numerous autism professionals has been a gift to me, has toughened me up, inspired me to make it right for them whenever I can. I won’t always be able to “fix it”, and I’ve come to a semi-peaceful place with that.
But over the years, for my sons, I have finally found my voice. I know, from meeting so many parents and reading their stories over the years, that so many of you have found yours too. I applaud you, and will only stop clapping long enough to pat myself on the back as well.
And as the year draws to a close, let’s raise our glasses, ones which hopefully contain the good wine, and make a toast to each other in honor of never, ever, shutting up.
July 26, 2010
Independence Day
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.
May 17, 2010
Castles in the Sand
“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.
Not Zachary.
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
Sky Diamonds
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.
