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 10, 2011


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.

October 28, 2010

Talk, Talk…

Posted in Life's Little Moments tagged , , , , , , at 11:32 am by autismmommytherapist

So, I loved high school, AND I enjoy public speaking. I know, I’m finding myself just a wee bit insufferable too. Readers, please bear with me.

Early this week I made my annual trek back to Washington, DC, in part to reconnect with friends I’ve had for almost twenty years now, and in part to test out my blatant “self-promotion speech” on a group of Maryland teachers. I was fortunate in that my first boss from Virginia is now a principal of an elementary school across the state line, and she was kind enough to give me the opportunity to speak to her faculty about my blog and manuscript. I ended up with an audience of about thirty educators, which is amazing considering they weren’t required to attend, and also that it took place on a Monday afternoon at 4:00. Yes, there was food, and yes I brought the good chocolate, but still, it was an excellent turn-out, and I am deeply appreciative of their participation as well as to my former principal for having me there.

I haven’t really spoken to anyone older than the pre-school set in about seven years, so to say I was a bit nervous about the event would be a slight understatement. I wasn’t as anxious about the delivery or the content as I was about the likely prospect I’d start bawling in the middle of it, but fortunately my friend Jess at www.diaryofamom helped me out on that end. Prior to leaving Jersey she thankfully reminded me that no, it was not okay to deliver my speech while simultaneously conjuring up next week’s grocery list, that in fact it would be okay if I got a little bit emotional considering the content of my talk. I did in fact end up keeping it together, but I think that particular counsel helped me a great deal. In the end, my gravest concern during delivery was the onset of the worst attack of dry mouth ever in the history of speech-giving, an affliction which will most certainly require a beverage of some kind to accompany me at my next gig.

No, sadly, it will not be a nice glass of pinot grigio. I am speaking in schools, people.

While there weren’t any waterworks, I admit the butterflies however were in abundance before I approached the podium, and as I turned one ear to the lovely introduction my former boss gave me I tried to quell those little bastards with my own inner voice. I ranged from admonishing myself to “just do it”, which seemed a little trite, to picturing Clooney from his Out of Sight days (which was much too distracting), to finally summoning up the faces of my sweet boys.

This, it turns out, is about as bright an idea as conjuring up the deathbed scene in Terms of Endearment prior to giving a wedding toast. I quickly moved on.

No, when the preliminaries were concluded I just decided to get up there and go for it, and with camera rolling so I could critique myself later (I’m a glutton for punishment) I approached the podium, laid down my carefully organized speech, and was just about to begin when that little voice piped up one more time with yet another of its bossy demands. This time, it simply said this:  “Kim, just have fun”.

And despite my need to conquer the Sahara residing in my mouth, that’s exactly what I did. Much to my surprise, I can’t wait to do it again.

There were a few other commensurate highlights of my trip. My first night in town I got to indulge my Indian food fetish with one of my dearest friends in the world, and the lovely young man who served us thought it necessary to card me despite the fact I could easily have given birth to a twenty-year-old (trust me, the lighting was VERY dim). I spent another evening with former co-workers discussing Waiting for Superman, which sounds so good I might potentially leave my couch and darken the doors of a movie theater if it plays around here. Finally, after indulging yet another fetish of mine and devouring an entire bowl of shrimp pad tai, I had the opportunity to plead unsuccessfully with the young shopkeepers at Georgetown Cupcake not to throw away their wares at five minutes past closing (we were in the NATION’S CAPITOL after all, what closes at 9:00 PM?), and despite telling them I’d commuted from Jersey for this specific carb, found myself resoundingly ignored. Clearly, the blonde thing doesn’t work as well anymore.

All in all, it was a fantastic trip, and one I hope to make more frequently in the future, as I believe I’ll one day be able to return with Zachary without losing my sanity permanently.

I was granted one last gift upon leaving, as I rounded the beltway sandwiched between the patchwork quilt of fall foliage that signifies the best month of the year in the District. I thought back to my last four trips since I’d left the area, from the weekend celebrating the birth of my dear friend’s beautiful daughter, to the trip I’d made last year, twelve months after my youngest regressed into autism, a few months after he’d begun to make his journey back to us. I realized all of these trips upon departure had been tinged with sadness, as some part of me when leaving this town always feels as if I’m leaving my youth behind once again.

And while that regret remained my companion, another one appeared to take up residence in my child-worn SUV as well. My new friend was hope, a figure eager to appreciate both what I was leaving behind, and what I was approaching as my GPS helpfully navigated me north. The truth is, both of my sons are productive, and happy. Most days my husband is as well. When I manage to get enough sleep between those pre-menopausal hot flashes, I must admit I am too. I realized, this is the first trip I’ve made since we relocated from DC that I can honestly say my melancholy at leaving is in equal measure to my desire to return home.

And that, my friends, constitutes a good vacation.