November 1, 2013

Raising Autism: Surviving the Early Years

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , at 9:54 am by autismmommytherapist

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It’s done! Five days ago I pushed the “I accept” button on Amazon’s self-publishing program, Create Space, and yesterday my memoir, Raising Autism: Surviving the Early Years became available to the public.

Yes, there is (at least) one very large glass of wine in my immediate future.

I’ve written about the book before, so I won’t go into lengthy detail again, but I have to admit to all of you it’s a huge moment for me, plus a relief to have it finished. I started it seven years ago when I shipped my first child off to full day school, wrote about a third of it when I was pregnant with the second one, then hurried to finish it just in case our last child would ultimately be diagnosed with autism as well. The “just in case” came true, and I put the book on hold to once again work with one of my kids, and finally had time this year to see it published.

As I mentioned before in my first piece, all the profits will be split between four autism organizations- namely Autism Speaks, Parents of Autistic Children (POAC), Someone Special Needs You (SSNY), and my son’s school. I’m hoping I get to write some big fat checks to these worthy organizations who have all played such a big part in Justin’s and Zach’s progress and happiness, and by extension, our family’s.

Please consider purchasing it (it’s available on Amazon, the CreateSpace eStore, and will be available on Kindle in about three weeks) and/or spreading the word to anyone you think might be interested in reading it. I promise my sense of humor comes through, and I pinky swear it’s not a “weeper”. Simply writing our story was incredibly cathartic for me- my deepest wish is that it will help those of you in the autism community as well.

Below is a brief excerpt from “Raising Autism”, a review, and links to where you can purchase the book. As always, a huge thank-you to my readers for their continued support, it means the world to me!


Excerpt from Raising Autism:

“Raising Autism” is the story of how my eldest son and I survived his early years without dissolving entirely the fragile and tenuous bond we had crafted with one another since birth. It is the story of how his father and I made every difficult decision, from choosing his schools, his therapies, and even to where we would ultimately come to reside, while constantly agonizing over whether we had made the right, and often irrevocable, choices. It explains how his diagnosis called into question everything I thought I knew about myself and motherhood, and challenged me to consider exactly what I was willing to surrender for my child- career, geography, friends, and perhaps my known self. This hard-won knowledge would sustain me through not just my firstborn’s diagnosis, but ultimately through my second child’s as well.

Over time I have learned to embrace the altered landscape of our dreams, to measure the depth of my love for my sons, and most importantly, to reconcile with their diagnosis and move on with my life. I’ve named this book Raising Autism for several reasons. In part the title harkens to the often Herculean task of simply getting through the day while encountering the myriad of challenges autism presented to our family. I also called it Raising Autism as celebration for those parents able to conjure a different concept of family, of what it means to love, respect, and take pride in their child while simultaneously rewriting a new version of the rest of their lives as well.

This is our story.

Review for Raising Autism:

“It is a thing of beauty that McCafferty constantly finds some way to draw poetry out of her daily experiences, dealing with her sons’ autism…She expresses herself with a fine mix of candid humor, wit and grace… Her unique parental insights and perspectives make “Raising Autism” an excellent piece of literature for thousands of parents out there who are experiencing autism’s double-edged sword of confusion and wonder for the very first time…”

– Vanessa Ira, Managing Editor, Exceptional Parent Magazine

Link to Amazon: http://www.amazon.com/Raising-Autism-Surviving-Early-Years/dp/1484912616/ref=sr_1_10?ie=UTF8&qid=138…

Link to CreateSpace eStore: https://www.createspace.com/4264622

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April 19, 2013

Autism Awareness Month- A Celebration of Autism Advocates

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , , , , , , at 9:46 am by autismmommytherapist

vince scanelli

Ed. Note:  April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism.

As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals.

Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the third interview in the series.

Vincent Scanelli

Vincent Scanelli is the president of the non-profit Someone Special Needs You (SSNY), as well as the president of the Douglass Organization for Occupational and Related Educational Services, Inc. (DOORS) program at Rutgers University. He serves as Vice-President for Ride for Autism, a group home liaison for New Horizons in Autism, and as a Community Work Partner for the Monmouth County Chapter of the Arc of New Jersey.

Vince is the owner of the Colts Neck Insurance Agency, and has twenty-five years of expertise in financial planning as well as specializing in special needs and estate planning. He has two daughters, and an adult son on the autism spectrum.

Kim:  How did you come to be an autism advocate?

Vince:  Honestly, it was because my son was born. My family was born into autism, all we do is what we’re supposed to do for our kids. I really give credit to people who do this and don’t have kids with autism.”

Kim:  How did SSNY and your future group homes come into being?

Vince:  My son Angelo showed me the way. When he was little his mother and I wanted him to have peer relationships, but there was nothing out there, no groups. I got together with a couple of other parents and created SSNY, where kids with disabilities are paired with neurotypical teens for various activities.

We wanted Angelo and other kids to be able to get together and have some peer and social interaction, so we started doing monthly events. As Angelo has aged, our focus has shifted off into group homes. After this I’ll probably investigate work programs.”

Kim:  How did you get started with creating group homes?

Vince:  We started thinking about doing all this back when Angelo was thirteen, and he’s nineteen now. A friend of mine who is a planner knew I wanted to do a farm, and he knew a builder who was involved with affordable housing. We then connected with New Horizons in Autism, and got a grant from Marlboro, NJ to move forward with the plans.

Marlboro gave us part of their Council on Affordable Housing (COAH) funding, plus we partnered with a special needs housing trust fund (a state program). After that we would be able to purchase a house through New Horizons in Autism.

Everything was approved in July, but now the plans are stalemated, and we hope to move forward soon. We have enough money to buy a house, renovate it, and put three adults in it.

Kim:  What do you envision for the property you want to turn into a farm?

Vince:  We need about two million dollars to complete everything, but the property is ready, it has been donated by a large development called Overbrook Farms. It sits on twelve acres at the end of a cul-de-sac, has two barns, and it’s just beautiful.

It will have ten beds, two wings for five adults each. Since we have the barns I hope we will be able to do many different farming activities, raise alpacas, maybe have horses, and host events. Hopefully we’ll get the community involved in it as well.

My goal is for the adults to work the farm. I’d love to see the farm provide jobs for the people who live there, and for people in the community as well.

Kim:  What are your dreams and plans for your son over the next five-to-ten years?

Vince:  I just want him to be happy. I want him to be safe, have a good quality of life, and be the best person he can be.

August 7, 2011

Brick by Brick

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , at 7:04 am by autismmommytherapist

It’s 6:15 on a Saturday morning, and I’m stumbling around the kitchen more than usual at this early hour because I stayed up late to catch up on the Big C last night (truly, are there many actresses more fabulous out there than Laura Linney?), and I know I’ll be paying for my choice all day. I drop Justin’s toast butter side down on our cold tile floor and mutter expletives under my breath for only my ears to hear, then trudge back to the refrigerator to start the process all over again. I call to my son once again to come to the table, grumpily insert a second piece of bread into our toaster, then head to the living room in the hope of luring Justin in for his least favorite meal of the day.

I’m on the threshold of kitchen and living room when he breezes by me with a box in his hand, grabs the juice waiting for him on the counter, then sits in his chair and turns to me expectantly as if to say “Woman, my meal is usually waiting for me, what’s going on here?”  I have to smile at the look on his face as I rescue his whole grains slice from an imminent charring, and head over to serve him.

It appears that instead of his DVD player, his usual companion, today my child has selected a box of Legos to accompany him. This box contains a myriad of plastic pieces that if assembled correctly will create a fire house for a tiny, but beaming, Elmo figure. I’ve witnessed Zachary create this contraption many times, generally in locations throughout our home where me and my husband have usually tripped over it. Justin has never shown the slightest bit of interest in its contents other than the occasional twirl of an errant plastic piece, so I’m a bit curious as to what he intends to do with the set.

I place his favorite plate in front of him and urge (beg) him to eat, then settle down next to him, as sometimes cajoling him in close proximity gets results. He pushes my handiwork away (and given my culinary skills, I really can’t blame him), and dumps the open box out on the table in a fairly controlled fashion, with only a few red rectangles sliding to the floor. He looks at me. He stares at the Legos. He looks back at the box, grabs my hand, extends my pointer finger, and jabs it at the picture.

It would seem, for the first time in, well, the history of his existence, my boy would like to build something.

It’s not that there haven’t been attempts at construction over the years, but in general, all forays into the world of building have been met with either great disdain, or a caterwauling cry of contempt that should have woken the dead. Over the years alphabet blocks, huge plastic cubes, and my personal childhood favorite, Lincoln logs, have all been relegated to the slightly dusty recesses of our toy closet, mostly in the hopes that our second child might exhibit some interest in playing with them.

To our delight, Zach has enjoyed them, and proven himself rather adept at handling them. There remains only one contraption for which our eldest ever displayed the slightest bit of pleasure. Its main purpose was to convey multi-colored marbles through convoluted configurations I was never spatial enough to form correctly, and even then, Justin’s approval of it was limited. I recall that once when I’d conscripted Jeff to construct a particularly complicated adaptation, the entire thing collapsed around us. To this day, I believe I can still summon the howls from our son that accompanied it to its demise. I’m pretty certain everyone in our lovely suburban neighborhood probably could as well.

At the time, we decided to put his future as an architect on hold.

But today it seems my son would like to build, and together, as his abandoned breakfast grows cold, that is exactly what we do. He tries to make me do it, which despite the fact that this activity is geared toward a three-year-old is laughable, but I persist in encouraging his independence. We begin from the ground up, me pushing his fingers toward specific pieces, then gesturing toward the photo. It is slow going at first, but eventually he is conquering doorways and window sills, attaching a roof and a garage with ease. The frame is slightly askew, and at the end of the activity it seems a flower pot may not find its appropriate home, will instead remain perched precariously on a ledge at the insistence of my son. Of course, I let it linger there. After all, who am I to interfere in the creative process?

When he finishes he brings Elmo into the fold, positioning him carefully in front of the entrance to the fire house, glances briefly at me with what is clearly a look of intense satisfaction, and grabs a piece of slightly overcooked bacon. I’m still slightly stunned by our morning activity, and as I always do, I run for the camera before our creation is destroyed and snap away for evidence. I sit back with my Coke90 and contemplate the scene before me, regarding my son who has already moved past his architectural desires and is, to my happiness, consuming his meal.

One of the most difficult things for me, in the constant push and pull of a life with autism, is trying to tease out which activities Justin would truly enjoy, and which are simply beyond the scope of his pleasure. I never want him to miss out on anything, yet want to remain cognizant of the limitations of his interests as well. His father and I are contemplating having him groomed for the equine portion of the Special Olympics, despite my fears that when he sees a strange venue, he’ll balk at participating. Every year when POAC holds its surf events I manage to get that struggling child to at least stand on a board, because he loves those amusement rides so much, and one day the urge to ride the waves just might kick in. We give it our best shot as a family to include him in everything possible. Ultimately, the hope is that like bowling or horse-back riding, something will click, and perhaps a lifelong passion will be discovered. Particularly with this child, since we can’t ask him his interests, we’ll never know unless we try.

And maybe, if we’re really fortunate, there will be other days where Justin himself shows us the way.

July 19, 2010

Ride the Wave

Posted in Life's Little Moments tagged , , , at 6:44 am by autismmommytherapist

We’ve finally made it, our caravan of three vehicles transporting two autistic children and four pairs of adult hands, the requisite number required to make certain both my boys can participate in Parents of Autistic Children’s (POAC) annual surf event at the Jersey shore. I am thankful we have indeed arrived, as we had previously endured a brief skirmish with Justin regarding the appropriateness of his wearing Tivas to the beach, and eventually, to my relief, I won. I simply refuse to take any of my progeny to the ocean clad in socks and sneakers. I am a Jersey girl myself, and I have my standards after all.

After navigating our way cautiously across the bustling thoroughfare of highway 35 we arrive safely with both children in tow, register, and settle in to dispense with the fifteen minutes we have left before my oldest son’s scheduled surf lesson. Justin unerringly finds the strategically placed food offerings that so entice him, and hunkers down at a picnic table to sample a small piece of submarine sandwich. I actually join him as I remember I have unwittingly forsworn lunch today, a minor tragedy I pledge never to repeat. Life is difficult enough without having to endure hunger pangs as well.

After compulsively checking my watch a dozen times to make certain we won’t miss our appointed hour, we clean up our residue and herd my sons down to the waiting shoreline, where I see the Brick lifeguards fully engaged in the job of ushering autistic children out to sea. There are makeshift lines in evidence for parents to stake their claim for the next surfing team, and I bark out orders to my family members to keep the kids alive while I wait to attract someone’s attention. Zachary has to be kept from wandering off, Justin needs peace and quiet to finish his sandwich, and of course, there are photo opportunities that cannot be missed. We are a well-oiled machine, primarily because I am bossy and have instructed everyone as to their job requirements prior to leaving the house. Each child has two adults assigned to him, as I am still wary after the recent near debacle of my not-so-great adventure with Justin. I am determined to leave today with both children alive, and at least one joyous photo of each recorded for posterity.

Clearly, I have ridiculously high standards for happiness.

Eventually I make eye contact with a strapping young man I would have deemed gorgeous twenty years ago (and still do), and ask him if he and his surfing lackeys can take my son out after they finish with their present charge. He smiles and responds we are indeed next in line, and I look back to gauge exactly how much sandwich remains on Justin’s styrofoam plate. It looks like enough to last the duration of the other child’s surf lesson, and I breathe a slight sigh of relief at that knowledge. Justin seems tired today, has in fact been conscious since long before dawn and has just completed his first day at his new school. I am confident he will not be in the mood to wait for anything. I am adamant that he at least try this sport, as he was fairly reluctant initially to mount a horse eight months ago, and obviously that has evolved into a beloved and preferred activity. I never know what will eventually click with him, and as his interests are limited, I want him exposed to as many things as possible. Besides, we reside ten minutes from the beach, and I practically grew up on one. It is impossible for me to believe he won’t eventually at least tolerate the roller coaster of sand and surf.

Eventually the little boy ahead of us relinquishes his viselike grip on the surfboard that has afforded him an unparalled ten minutes of fun, and he finally plants his feet on solid ground and disrobes from his life vest. The head lifeguard calls out to me that it’s Justin’s turn, and I wheel around to ascertain if enough of his Italian sub has been devoured for him to transition to a new activity. I eyeball the messy remains of the sandwich, and decide he has indeed ingested enough to pull him away from his secure spot and attempt the inherent treachery of the ocean. I am certain he will not be thrilled with my request.

He reluctantly but dutifully hands his plate to me as I knew he would, my son who always strives to be my good boy. I take his hand and walk him to the waiting cadre of surfers, and as we approach the individual holding the life vest I can see in his eyes he remembers this event from last year, and is not impressed. I’m wondering if we will be able to accomplish our goal after all.

But today has been a good day for Justin, and although he is not enthralled with the concept of what is about to transpire, he complies to my whim of ensconcing him in his jacket, and follows me, albeit reluctantly, down to the water’s edge. I instruct his new friends to simply take him in and do their best to encourage him to at least lie on the board, because often Justin responds to a situation much better after the preliminaries have been dispensed with completely. Two swarthy young men carry him in while the remaining guards transport the board, and they quickly attempt to situate him upon it through the roiling surf. They try several times, but my firstborn will have nothing to do with this alien, elongated piece of fiberglass, and instead clutches for dear life the closest human he can find. I am amused, that of course, it is the pretty girl. My son has his standards as well.

I shout to them to return him to me, and they quickly comply. Justin looks relieved, pulls my hands to help him shed his equipment, and unerringly picks his way among the crowds to his waiting snack. I thank the group profusely, and they murmur somewhat dejected apologies, which I quickly refuse. I tell them we’ll try again next year, and with the resilience of youth, they accept this promise, and move off to the next child who looks far more eager to attempt to master the waves. I turn back again, make certain Justin is still consuming his prize, then allow my gaze to wander a few feet forward to a small crowd encircling a stationary surfboard with a small child upon it, one who is responding to a cry to “hang ten” with a semi-crouch and airplane arms, and eyes making certain everyone concurs that he is the main attraction.

That child happens to be mine.

It appears that my three-year-old, the one I didn’t even bother to sign up for this event due to his fears that the ocean is “too loud”, has appropriated his own board and team to accompany it. I stride rapidly over to the scene to make certain someone in my family is capturing this on film, and arrive just in time to hear one of his newfound friends ask him if he’d like to go surfing in the ocean. He replies with a resounding “yes!”.

This is the child, who although light years milder in his autism affliction than his older brother, is still plagued far more seriously with sensory issues. He still regards the vacuum as a threatening ogre, reviles sand between his toes with the same vehemency as his father, and will permit only two different textures of food items to grace his palate. His issues have slowly begun to resolve themselves with time and maturity, but nowhere in my repertoire of “he must try this anyway” did I include a rendezvous with the sea. To date, he has refused to even immerse his toes in the receding surf, and recoils from its vastness even while cocooned in the safety of his mother’s embrace. His desire to attempt this on open water frankly stuns me.

And I could not be more thrilled.

Zachary is asked to stretch himself out on the board and grip the sides tightly, a command with which he willingly responds. He is still so light that his surfing cohort can whisk him into the sea by simply raising him to shoulder level and simultaneously battling the waves, all with my smallest son staring out to the horizon, impatient for the adventure to commence. I whip off my beach dress and rush out after them, not because I fear they’ll lose him to this monolith of salty brine, but from the desire to be in close proximity should he seriously regret this decision. I immerse myself for no reason. He doesn’t even notice me. He is simply enthralled with the ebb and flow of tide.

I am within earshot of hearing him politely decline to sit or stand on the board, and his refusal to comply is irrelevant to the joy and intense concentration evident in his countenance. He has conquered his fear of the ocean, and I have no doubt in the next year or the one following he will eventually be obeying the tide’s majesty, and gliding safely into surf’s edge. I watch him, toes scrabbling for purchase on the slick surface of the board, tiny fingers wrapped securely around its edges, face redolent in its awe. He is magnificent.

He does not realize what a gift he has given me today, how these instances sustain me through the terrible times, or even simply the sad moments, those instances most often accompanied by self-doubt that I am doing anything, everything, I can for these boys. I wish I could explain to him what this means to me, but he is three after all, and would simply reply “mommy is happy”.

And he would be correct. She is. And as I turn toward shore to watch my family rejoice at his bravery, I feel myself buoyed by a wave both of water and sheer contentedness, and for that moment, I am healed.