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 30, 2012

Stage Left

Posted in Life's Little Moments tagged , , , , , , at 10:45 am by autismmommytherapist

We wrapped up our first run of “Raising Autism” this weekend, and I truly have mixed emotions of both exhilaration and relief as I sit here typing this morning. It was an amazing experience, a good portion of which occurred in tandem with a brutally difficult period with our eldest child. My feelings about both are permanently intertwined with one another, with the outcome being extreme appreciation that Justin has mostly returned to his old self, and gratitude that both shows, in my opinion, went extremely well.

Just in case you’re wondering, there will be no self-inflated post-play ego occurring here. Mere hours before our last performance, both of my progeny were enmeshed in such extravagant tantrums I wasn’t certain their parents would make it out alive. This Sunday morning, after the concluding show and a much-needed celebratory glass of wine, I was awoken by an energetic and enthusiastic child at 6:03 AM (yes, I noted the time), and literally dragged out of bed by his tenacious desire to eat toast. Autism, and children in general, have a way of keeping one humble.

So much for the glamorous life of an actress.

I promise this will be my last post about the play (at least for a while). I can’t thank everyone who came out to support POAC Autism Services enough.  I also appreciate the support shown for the three women who shared so many of our community’s stories on stage.  I’ve already listed all the “players” in my last Gratitude Attitude.  I would be remiss however if I didn’t say one final huge thank-you to Bobbie Gallagher and Babette Zschiegner, my actresses extraordinaire, both of whom brought such humor and heartfelt emotion to my script that it was simply a joy to listen to them on stage.

A special thanks to Mary and Scott Craig, my understudy and “sound man” respectively, as well as to Herb Herbst, Brendan Kelly, Colleen Earp and Abi Gardner, all of whom were instrumental in pulling off this gig in a real theater. Thanks as well to POAC Autism Services for helping to underwrite this endeavor, to all of my volunteers, and to everyone who kept me calm throughout the process of literally taking this show on the road.

Trust me, that was no small endeavor.

I’ve mentioned this before, but I hope this isn’t the “end of the road” so to speak for “Raising Autism”. I am hopeful a few specific autism organizations will take my freely offered script and bring this piece to life again, and am keeping fingers crossed that several theaters in the area will take the play on as a philanthropic production. Both dreams are a longshot, but frankly so was writing a play in the first place, so I figure I’ll go for it.

I also plan on eventually offering “Raising Autism” to any legitimate autism agency anywhere that wants to use it as a fundraiser, and hopefully, some will. As I’ve mentioned before, it’s a very basic production. If you’ve got three chairs and three literate women, you’ve basically got the play down cold. Trust me, I knew enough to create a vehicle where I had the luxury of sitting the entire time, one which required no memorization, dialogue, or movement other than breathing.

I’m middle-aged. I know my strengths.

I’ll see what the universe has in store for me down the road. But if nothing else, we raised a nice little chunk of money for POAC Autism Services, a wonderful autism organization that has truly changed the lives of so many families residing in the Garden State. As a bonus note, I also got out of the house AND had the privilege of acting for four hours, an entirely new experience for this current housewife.

In the last venue we even had our own dressing rooms. Maybe there’s a bit of glamour here after all.

But perhaps most importantly, I had the great fortune to be told directly that my writing touched the audience. I had a lovely “review” from a family experiencing a similar difficult period with their own autistic child, one who shared with me that after hearing my words, for the first time in a long time, they didn’t feel so alone.

And truly, that was the point of doing all this in the first place.

Thanks again to everyone who played a part in bringing “Raising Autism” to two wonderful audiences!

April 23, 2012

The Show Must Go On- “Raising Autism”

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , , , , , at 10:06 am by autismmommytherapist

I’m fidgeting, and as I stand in the wings with my actresses, preparing to take the stage for my autism play, I admonish myself to stop (using my own “teacher voice” no less). Gary Weitzen, Executive Director of POAC Autism Services, is wrapping up his introduction, and I’m anxious to be up there and get this show literally on the road. I take a few deep breaths, solicit the last remnants of saliva from their hiding places in my mouth, and attempt to clear my head.

I recall my “performance mantra”, which is SEL (“Slow down Jersey Girl/Emote, woman!/Look at people on occasion”), and feel my uncooperative stomach settle. I remember the trick I’m using to get through the play without bawling continuously, which is to conjure up clips with female comedians to my stressed-out brain. Melissa McCarthy during the bathroom scene in Bridesmaids easily comes to mind. Kristen Wiig holding a raw chicken on Saturday Night Live, and losing it, follows. An Amy Poehler and Tina Fey chaser in, well, anything, concludes my comedic quad.

Gary wraps up his speech, takes his seat, and I hear the strains of my brother’s music emanating from the sound board backstage. We reach the song’s first crescendo, I gently tap my friend in front of me, and we head for the stairs.

Ready or not, it’s showtime.

This past Saturday night, through the graciousness of POAC Autism Services,I had the great fortune to both act in and produce a play I wrote almost a year ago. It’s entitled “Raising Autism”, and its stories are shared through the medium of three mothers reading from faux diaries, laying their experiences with their children bare for the audience, and themselves. I came up with the idea last summer, and thinking that attempting fiction for the first time while entering middle-age might not be a realistic goal, I didn’t take it too seriously. I had a desire to create a fundraiser for POAC that could be easily replicated down the road, and an urge to divert a bit from my path of writing about my daily life with two boys on the autism spectrum, but truthfully, I didn’t really think I could do it. I’d wrench myself away from my pool every morning the boys were in summer school (the horror!) and write an entry or two, then leave it alone for a few days to write for my blog.

About six weeks into the summer I realized I had half a play, and my husband said it was pretty decent. Who knew.

Ten months, a lot of rewrites, (and a profound amount of begging for donated services later), we’re here, and I’m thrilled to say minus a few sound issues (there’s always something, it’s THEATER), the night went beautifully. My friend and mom of two on the spectrum Babette Zschiegner truly threw herself into her part, and got laughs in all the right places. My other friend and actress Bobbie Gallagher, also the mom to two with autism (I know, there’s a theme here) brought a raw emotion to a role I frankly am too chicken to play, and simply dominated the stage. Given the sniffles (and chuckles) I heard in the audience I think my slightly sarcastic college professor was well-received, even down to her anti-religious leanings and the difficulties of raising autistic twins with her partner back in the early nineties. Although I could only see a few legs from the front row (thank God for the black void of extinguished house lights), I’m told the audience was truly invested in the performance, and for that I am eternally grateful.

After all, I gave up a ton of tanning hours for this little production. It’s nice to reap some reward.

There’s one performance left this coming Saturday April 28th, at the Jersey Shore Arts Center in Ocean Grove, 8:00 PM. If you’re interested, you can purchase tickets off the POAC website www.poac.net, or pay in cash at the door (the theater seats 600, I promise you’ll get in). All proceeds go directly to POAC Autism Services. I promise, if you either have or teach a child on the autism spectrum you’ll find something in the play to relate to. If you don’t, I can guarantee you’ll learn something that evening.

And if you make it next weekend, on behalf of POAC and all the families it serves, and this mom/writer as well, we thank you from the bottom of our hearts.

Gratitude Attitude

Posted in Uncategorized tagged , , , , , , , at 9:45 am by autismmommytherapist

Today, I just want to extend my gratitude to everyone who came out Saturday night to support both my play “Raising Autism”, and POAC Autism Services as well. POAC is one of the largest service providers for autism in the Garden State, and an organization consisting of some of the most determined and dedicated parents I’ve ever encountered. Special kudos go to Scott Craig, for working with the antiquated sound system of a high school auditorium, and bringing our words to life. Thanks to Abi Gardner and Colleen Earp for “giving us light”, and more importantly, talking me down from the ledge of “everything that can go wrong”. Major appreciation goes to Brick Township High School’s drama teacher Paul Bibelheimer, for setting up the stage and summoning the patience to explain “audio feed” to an ex-elementary school teacher. Thank-you to Duke Clement, our fabulous videographer who donated his professional services as a favor to a friend.

My appreciation goes to the Brick Township Board of Education both for approving and donating the space (thank you!), and to principal Dennis Filippone for hosting us. Major thanks to our “crew”, Tom, Sean and Al, who managed to make a high school stage look semi-professional. I thank Kerri Licini, Maureen Martino, and Kristin Maurer for handling the door, and for the kind words prior to our performance. Much love to my brother Erik Rutan for providing his lyrical notes, and some much-needed support. My respect and gratitude to all of POAC Autism Services, particularly Gary Weitzen and Simone Tellini, for their help, time and patience as I went over the details “just one more time”.

My most heartfelt appreciation to all of my actresses, Babette Zschiegner, Bobbie Gallagher, and Mary Craig. From figuring out the logistics of how to attend rehearsals, to pouring out everything you have onto that stage, I am so grateful. I literally (!) couldn’t have done it without you!

Finally, my love and appreciation to my husband Jeff, the “real theater guy”, and my boys, Justin and Zachary.  Thanks for your love (and patience!).

April 8, 2012

“Raising Autism”- a POAC Autism Services Fundraiser

Posted in My Take on Autism tagged , , , , , , , , , , , , at 7:50 pm by autismmommytherapist

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!

March 23, 2012

“Raising Autism”- Gratitude Attitude

Posted in Uncategorized tagged , , , , at 2:56 pm by autismmommytherapist

Today’s Gratitude Attitude goes out to my fabulous actresses and friends, Bobbie Gallagher, Babette Zschiegner, and Mary Craig, for a great rehearsal this morning.  I can’t believe our first show is in four weeks!  Major thanks to everyone who is helping to promote the play, I truly appreciate it!

March 12, 2012

Break a Leg

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 8:24 am by autismmommytherapist

I step out onto the stage, the theater manager trailing slightly behind me.  We’ve attained these heights by walking through a labyrinth of hallways in the underbelly of the building, all of which eventually converge into one slim stairwell, which has brought us here.  I tentatively approach the edge, am rewarded with the sight of hundreds of empty seats waiting upon my words, an old but working venue with a real balcony to boot.

My young guide starts to tell me about microphone amps and soundboards, but I momentarily tune him out as I think about what else has brought me to this exact spot.  I think about how the words of my play, Raising Autism, will be performed here in a  month, and I am exhilarated.  I remind myself that I will be one of the actresses saying these words, and I am momentarily terrified.  The entire enterprise of writing, acting, directing and producing a play is an unprecedented stretch for me.

Then I recall that some of the simplest aspects of daily life are an almost Herculean stretch for my eldest son, a boy with moderate autism.  I take a deep breath, and take one more step.

I never actually intended to write a play about autism, had frankly never entertained the possibility that I could write fiction.  In a dual effort to share my story of living with two children on the spectrum, and to attract publishers for my memoir about those experiences, I began a blog two years ago.  I quickly found myself quite content to remain within the confines of the non-fiction genre.  The idea to write a play about different families’ experiences was actually born out of frustration, and came to me while driving in my car, where it seems most of my decent ideas still originate.

My mom and I had recently pitched the idea for our educational non-profit to a local school district, a program whose central tenet is pairing typical and non-typical peers (with a strong dose of anti-bullying thrown into the mix), and we hadn’t had any takers.  My inquiries sent to other districts in the area had been met with either silence, or an interested but polite decline.  I remember thinking that I had to do something to get my name out there to attract attention for it, and if possible, I also wanted to make this venture philanthropic in nature.

As I waited for the light to turn I thought about the amazing stories I’d read on various blogs about autism over the past few years, and the riveting memoirs I’d discovered as well.  I considered the fact that there might be a few tales left to tell, that in a state like New Jersey, where one in ninety-four children is affected with autism, I was potentially surrounded by a community of people who might be interested in those stories.

I thought about how POAC (Parents of Autistic Children), which is literally around the corner from me, had done so many wonderful things for families in the autistic community residing in the Garden State.  I figured if anyone actually showed up for this fundraising event, I might be able to contribute slightly to their efforts.  These efforts range from educating parents, professionals, and law enforcement about autism to my personal favorite, providing a range of activities for families where their children with autism are welcome, and safe.

Then the light changed to green, my son gently kicked me in the back to remind me to drive, and the concept for a play was born.

I knew it would be impossible to encompass every type of child on the spectrum (as well as the parents who raise them), so I brainstormed characteristics of various children I’d read about or met over the years, and slowly four distinct individuals began to form.  There are a myriad of issues surrounding the raising of a child with autism, and although I certainly couldn’t include them all, I attempted to select those which had affected many families with whom I’d spoken since my first son was diagnosed in 2004.  Finally, I sat down to flesh out the women who would tell these stories, because I wanted the play to come from a mother’s perspective, which I felt I knew best.

And like old and trusted friends, those characters were already there, just waiting to be given a voice.

All of the women are quite different from one another, both in temperament and in background, and all three are reading from their “diaries”. One of the characters is a young mom with a newly diagnosed son.  She is struggling with the label given her child, her fractured marriage, and the fact that she has recently discovered she’s pregnant again.  The second is a single mom faced with the challenge of almost sole care of her brilliant but challenging pre-teen daughter with autism, a woman who is able to channel faith to give her the strength to persevere in what seems to her like almost insurmountable odds.  The last character is a college professor discussing her experiences raising adopted teen-aged twins with her partner, sharing both the challenges they face now, and the struggles of having two children diagnosed on the spectrum well before autism was a household word.

I have to admit, I really like these women.  If they were real, they’d be my friends.

My reverie is slightly broken as the enthusiastic manager begins to educate me as to the merits of a spotlight versus more traditional lighting techniques, and I realize I’d better pay some serious attention to the information he’s sharing with me.  For the moment I put aside my desire that this play will garner POAC a veritable boatload of funds.  I shelve my intent to offer the script up for free when I’ve finished performing it for my “pet autism orgs”, because really anyone with a living room, three chairs, and a few literate women could easily put this play on as a fundraiser.

I stop thinking about how fearful I am that my middle-aged brain will forget a crucial detail in the production of this piece, like advertising it, or wearing deodorant the nights we perform.  For the moment, I ignore the fact that when I hit this stage I might be overwhelmed by the sheer weight of what has brought me to this place, the suffering I’ve witnessed in both my children, coupled with their multitude of triumphs.  I fear I might have difficulty forming the sentences from a  script that in many ways serves as a backdrop for my life.

Then once again I remember how often my son struggles just to say the word “mom”, and I know I can do it.  I owe this to him.

I barely miss tripping over wires that would have landed me perilously close to the stage’s edge, and make a mental note to avoid tumbling to the floor for dramatic effect on performance night.  I turn to the young man whose grandfather has so graciously reduced the price of this rental due to its philanthropic bent, and give him my full attention as we discuss whether our chairs should be placed in front of or behind the scarlet curtain.

I shake off my worries and concerns as I’ve done hundreds of times in the past eight years, and try to live in the moment.  Through the graciousness of POAC, in a few months I will get to share an amalgamation of so many mothers’ stories to a live (and hopefully receptive), audience.

I will have the chance to honor my sons.

And as I carefully back over the slim strands of the wires which will carry my words throughout this elegant room, I allow myself one last extraneous thought.

Break a leg, Kimberlee.  Break a leg.

For more information about POAC Autism Services or tickets for the play, please visit POAC at:

http://www.poac.net/

February 8, 2012

Gratitude Attitude

Posted in Uncategorized tagged , , , , , at 3:36 pm by autismmommytherapist

This week’s Gratitude Attitude goes out to Gary Weitzen, Executive Director, and Simone Tellini, Training Coordinator, of POAC Autism Services.  Both have been  instrumental in helping me get my play, “Raising Autism”, off the ground.  All proceeds from the play will go directly to POAC Autism Services.  Thanks to both of them, and for further information, go to their website at:

http://www.poac.net