October 31, 2011

Washington Revisited

Posted in Fun Stuff, Life's Little Moments tagged , , , , , , , , at 10:22 am by autismmommytherapist

My annual “leave the husband and kids behind” trip back to Washington, DC transpired this past week, a ritual I plan never to abandon as long as I continue to draw breath. This tradition consists of three nights and three days of consuming the Indian and Thai food I can’t get in this part of Jersey; the palpable absence of potty training; and seeing old friends who knew me before I was old enough to rent a car. Through the grace of my husband and mother, each fall since we relocated to the Garden State I’ve been granted the temporary reprieve of being someone’s mommy, or someone’s wife. Amidst the backdrop of our splendid nation’s capital I had the pleasure of finishing complete sentences, recalling why I walked into a room, and simply reconnecting with myself.

As always, it was fabulous.

This was probably the first year I pulled out of my driveway without crushing guilt as a companion, and I have to say I quite prefer things this way. It’s not that I haven’t thought I deserved the time away, or had the right to preserve relationships I’d built over the course of the fifteen years I lived in DC. It’s just that in the past, the boys have been so difficult I’d hesitated to leave my working husband with an additional job. I’ve persisted in planning this trip however because I’ve always been of a mind that one of the best things we can do as parents is to take care of our own needs, not just those of our children. For me, that seems to include ethnic food and the chance to sleep past 5:30 AM a few days a year, if my body will permit. I’m a much better mother when I get my annual fix.

And according to my husband, much more pleasant to be around as well.

I’d originally had big plans of trying to cram in everyone I’d ever met during my youth into one seventy-two hour visit, a goal I’ve tried to attain every year, but in the past had been too exhausted from the travails of autism to bring to fruition. This time, with things being what I like to refer to as “as Disneyesque as it gets” chez McCafferty, I’d thought I’d expand upon my usual reunions, get ambitious, and try to visit with several people I’d not seen in years.

In Maryland and Virginia reside several school administrators from my teaching days, individuals I’d hoped to chat with about a project I’m developing for the public schools. There was a lovely girl from high school with whom I’ve developed a friendship on Facebook (which leads me to believe that while Ms. Betty White is correct about, well, almost everything, perhaps the social medium isn’t a TOTAL waste of time). I could have chosen to spend an afternoon with an educator friend, one who’d contracted pneumonia the week before and couldn’t make what I’ve long dubbed my annual “teacher dinner”. But two weeks before I left for the beltway I strolled into my allergist’s office to renew my inhaler scrip, and walked out for an unscheduled emergency visit to my GP with a blood pressure reading of 170/100.

I’ve decided that middle age sucketh.

This wasn’t a complete surprise, as my BP has been slightly elevated for years, an inherited gift from my mother (whom, since she gave me life, I’ve subsequently decided to forgive). I’m fond of saying “everything is cumulative”, and although our little family of four has shed so many of the daily pressures that plagued us for more than half a decade, I can feel that stress still, view it as a permanent resident within the confines of my physique. My heart working overtime is probably the reason I’ve continued to have those pesky, albeit now infrequent, dizzy spells. This is a condition I chalked up to the pinched nerves my neurologist discovered this summer through the miracle of MRI, unsettling events that were radically reduced when I stopped picking up my seventy-five pound child, and began hugging him with our four feet on the floor. I thought I’d been thorough in my medical approach, and figured I’d just have to live with reality, along with forgetting my children’s names and having to pee every five minutes. I didn’t continue to put my health first.

And the consequences could have been terrible.

There may not be many universal truths, but one that is incontrovertible is that I need to be on this earth as long as humanly possible for my boys. My goal remains to make it until Justin is seventy (which is a bit unrealistic as that would make me 106, but I can try), because unlike other offspring who will exchange dependence for independence with partners and spouses, he will always need help. I plan on remaining one of those people as long as I’m able, pushing him always to do for himself, to anticipate and execute his own needs.

And I need to remember to do the same for me.

So this trip, I kicked back and relaxed more than I am generally wont to do, and forced myself to slow down a bit. There was still quality time with dear friends, the kind whom you can interrupt mid-thought with a name from twenty-five years ago and they not only recognize it, but completely comprehend the segueway. I managed to infiltrate Georgetown Cupcake this year after the employees unceremoniously prevented our access to carbohydrate heaven last October (the fact that we arrived one minute past closing and I hailed from New Jersey apparently moved nobody). I even managed to pull off three glorious hours alone navigating the cobblestoned streets from Georgetown to Dupont, a languorous walk in which I managed not to think about children, or autism, or anything remotely important for the better part of an afternoon. I took it easy. I didn’t rush, and purposefully slowed my pace. For once, I simply lived in the moment, and that moment was fine.

And that, my friends, is “good times”.

September 14, 2011

Someone Special Needs You (SSNY)

Posted in Fun Stuff, My Take on Autism tagged , , , , , , , , , , , , , , at 11:14 am by autismmommytherapist

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

Someone Special Needs You

Colts Neck Journal article (information on the group home, pages 37 and 38)

February 27, 2011

The Nanny

Posted in Life's Little Moments tagged , , , , , , , , at 10:51 am by autismmommytherapist

My husband just walked in the door with suitcase in hand, and except for the time my water broke in the middle of the night, I have never been happier to see this man in my entire life.

It’s been an interesting few days chez McCafferty while my spouse has been “working” in DC (just kidding hon), leaving me to fend for myself with the next generation. He only travels (abandons me) a handful of times a year, and for the most part, things run pretty smoothly during his absences. To date there have been no broken limbs, no trips to the ER (except on cable to visit Clooney), no true catastrophes that I haven’t been able to handle. I’ve been lucky, for although I used to command classrooms of thirty pre-adolescents with comparative ease, on occasion I have been brought to my knees by two particular children (you guessed their names correctly!) who reside in the single digit crowd. Fortunately, these occasions have yet to occur when I’ve been playing the role of single mom.

I believe they’ve consciously taken pity on me. I am grateful.

For the most part the past week has only been particularly challenging because I’m sick and subsequently not sleeping well, having contracted what I was certain was the Ebola virus, but fortunately turned out to be just a garden variety sinus infection. Seeing as this secondary infiltrator followed a three-week bout of bronchitis not nasty enough to incapacitate me, but serious enough to convince me I’d drown in my own fluids, I wasn’t really up for the solo parenting gig this time around. Throw in a gratuitous four-day weekend (the kids haven’t had five consecutive days of school since November and reality tv rules the world, are the presidents REALLY that important anymore?), and it is readily apparent how excited I was to spend some quality time with my kids.

Forget birthday presents this year. Somebody just buy me a damn nanny.

Despite my longing to crawl into bed with some Sex and the City DVDs, Dayquil, and if I’m honest, a “clandestini” (I saw it on Facebook once, have no idea what’s in it, but doesn’t it SOUND fun?), I managed to rise to the occasion, and do my job. For the better part of a week the children were fed, potty-trained, and bathed. There were trips to the arcade, Fun Time America (which, as you hopefully read, was quite an accurate description), and a twenty-four hour stint with an equally ill, yet still extremely helpful, grandmother.

Zachary, in particular, really made out. Every afternoon my youngest, after a great deal of manipulation on his part, convinced me I wouldn’t die if I got off the sofa and “played trains” with him, and I complied. After promising not to breathe in my general vicinity he was even the eager daily recipient of couch cuddles, followed by multiple variations of storytelling involving Zachary, Baby Jessie, and Rexy-the-Medium-Sized-Dinosaur. Hell, I even dragged my butt to Michael’s while he was at school and bought him Saint Patty’s Day crafts.

All in all, for once, it was good to be the second child.

I have to admit that when Jeff finally walked in the door, triumphant from a great work session near our nation’s capital, I was feeling a bit full of myself for handling the home front on my own. After all, I’d gone through six boxes of Kleenex and two bottles of Nyquil but the kids were still alive, and the house looked (relatively) decent. After Jeff ditched the suitcase, conducted the requisite rounds of hugs and kisses, and returned the exclamations of “He’s back, he’s back!”, he folded his large frame carefully and knelt down next to Zach at the kitchen table. While discussing the merits of dipping or not dipping a morsel of hot dog into ketchup Jeff waited until he had his youngest’s attention, then took his hand and asked, “Zachy, did you have fun with Mommy?”

My son continued to chew thoughtfully, regarded my husband seriously, and replied, “No”.

Really. REALLY?!?!

I wasn’t looking for either the medal OR the monument, but I admit I was searching for something a bit more complimentary than one negative, solitary syllable. Jeff regarded me quietly with a slight smirk on his face that I vowed to make him pay for later, shrugged his shoulders, and bent back down to answer an all-consuming question about the Chuggingtons from my deeply ungrateful child. I turned and headed back toward the sink, lightly touching the head of my oldest and momentarily favorite offspring.

After one brief stop at the refrigerator for the reward of that dark piece of chocolate I felt was my due, I reached that silver chasm of dishes and once again wielded a sponge at the hundredth utensil I’d cleaned that day. I sighed, relegated myself to the ranks of the unappreciated, and summoned the phrase so often stated by my grandma when I’d regale her with stories of poop, vomit, sleepless nights, and more poop, back when Justin was a mere babe.

Welcome to motherhood.

February 10, 2011

Sanctuary

Posted in Life's Little Moments tagged , , , , , at 11:36 am by autismmommytherapist

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.