March 5, 2013

POAC Autism Services Walk-a-thon

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 11:05 am by autismmommytherapist

April, Play, Walk 2012 067

I know. Repeats suck.

Today I hope you’ll bear with me however, because I’m going to recycle something I wrote two years ago, a post that is dear to my heart. It’s about POAC Autism Services, and one of their many annual walk-a-thons in which my family participates every year.

This year it will be held on Sunday, April 28th at 12:00 in Blue Claws Stadium in Lakewood, and as usual, I anticipate they will have a stunning turnout. Even if you don’t contribute financially, please consider walking with us that day. If you have a relative, friend, or neighbor who has a child with autism, just your presence and support will make a difference in their lives. Thank you!

“Elmo should go back to Sesame Street, Mommy” says my youngest child as he hunches down in his stroller, in part to avoid the wind whipping mercilessly around the stadium on this early April morning, and in part because Elmo is clearly lost, and therefore should leave immediately. Buster, the Lakewood BlueClaws mascot is here as well, but today Zach is not impressed, wants solely to traverse the gusts making it difficult for me and my mother to even gain entrance into the park.

It’s World Autism Awareness Day, and not coincidentally the first of several walk-a-thons to be held around the state of New Jersey for POAC Autism Services , and it feels more like early March than spring. I am confident a breeze will not prevent anyone from participating in today’s event however, am excited that thousands of people from around the state will be donating and walking for a cause that perhaps has completely infiltrated their lives, and their hearts.

I know it has done so with mine.

As we wheel Zachary through the gates I allow myself a moment of self-congratulation, because we’re here without Justin, and for the first time, perhaps ever, I don’t feel the slightest bit guilty. He would have been upset long before we reached our destination, confused by a trajectory of roads that lead him to an open building with nothing inside that would interest him, although there will be plenty here to captivate Zach.

So, I’ve left my oldest with his father to attend this month’s autism movie.  Jeff later reported almost nobody was there for this showing, so I’m hopeful they all attended the walk. Although Zach has autism as well, the progress he has made has been so stunning I am confident he will one day be able to harness the anxieties and impulsivity that herald his brand of the disorder, in a way in which his older sibling will never be able to do. While I walk for all children on the spectrum, my primary motivation will always be for Justin. I’m sad he won’t be participating with us today, but I know he’s in a happier place.

Hopefully, Jeff is too.

As my little family of three wends its way through the crowds I spend a few moments taking it all in, the people ensconced in boldly colored t-shirts proclaiming their love for someone on the spectrum, the vendors and sponsors with their brochures and enticing crafts for little hands. I can only imagine how much planning it took to create this day, what combined effort and expertise went into an event of such magnitude.

Every face I walk by seems cheerful, from those hawking autism “accessories”, to those preventing an unhappy child from a meltdown in the stands. There is a palpable aura of peace here, of parents stripping away the confines of an often harrowing existence, and simply reveling in a day, worldwide, about us.

And with all due respect, I kindly assert we deserve it.

In what seems no time at all Zach conquers three moon bounces, a playground, and a multitude of crafts, and it’s time for the exercise portion of the day to commence. Gary Weitzen, executive director of POAC, descends to the bottom of the stadium to address the crowds, and it seems as if even those children and adults who are vocally stimming quiet a little, are loathe to miss a word.

He speaks of his gratitude to everyone who contributed both physically and financially today, to those who continue to underwrite an organization which is the largest provider of free autism trainings in the entire state. Reference was made to an impressive figure raised that almost hit the six figure mark, and may yet do so before the month is through.

Gary cheerfully reminds the crowds of all POAC Autism Services does for families who might otherwise have limited recourse to recreational activities, always for no cost. And after a stunning rendition of Christina Aguillera’s “Beautiful”, we are free to walk, to continue to take steps in the right direction to heal our children, our community, and our hearts.

I pause for a moment before we begin the sole loop my family will participate in today (a four-year-old has his limits with philanthropy), and as the sun slips over an awning that previously provided shade I am required to squint to take it all in, to view the masses moving in quiet solidarity around the circumference of the field.

There are spaces of course, but as I remain still, I notice that slowly, steadily, they are being filled, as some teams lag behind, and others proceed at a quicker pace. I know if I stood here long enough I’d behold one great, cohesive circle of commitment, seamless in its synchronicity of volunteers, parents, children, teachers and therapists, all striving mightily to fill the gaps.

And filling the gaps is exactly what POAC Autism Services has done so beautifully for well over a decade now, and I’m certain will continue to do so for many more to come.

Zach looks up at me impatiently, imploring me to return to the relative warmth of my car and take him home for lunch, and I concede to his desires. I take one last look back from the threshold of the stadium, and am rewarded by a thinning of space, of the blankness between what has been offered to our children, and what should be provided to them.

I am so grateful this organization has stepped up to help erase those voids, so appreciative of all those who made it possible to be here today. Once again, we find ourselves a part of a community who cares. And I am reminded anew of what Gary so eloquently communicated to us all at the POAC Gala, mere weeks ago, in his welcoming speech.

We are family, indeed.

Check out POAC Autism Services on their website at:  http://www.poac.net

July 16, 2012

Surf’s Up

Posted in Life's Little Moments tagged , , , , , , at 10:07 am by autismmommytherapist

We reached the height of the ramp leading to the beach, and my smallest son exclaimed at the vista laid out before him of sand, surf, and lifeguards waiting to take him for the ride of his life. He rushed down toward their stand, proclaiming to all who would listen that “he’s going to surf!”. Zach finally stopped in front of their perch, stretched his arms out wide, and informed them that “he’s here”, and ready to go. He was in for the time of his life.

So was every kid with autism who participated in Brick Township’s fifth annual Autism Surfing Day last week.

Dan Santaniello, deputy director of the Department of Parks and Recreation who created the event, saw something similar transpire in Monmouth County, and wanted to offer a commensurate afternoon to children with autism in his home town. Since all the lifeguards involved donated their time, the program does not cut into Brick Township’s budget, an important consideration these days when taking recreation activities into account.

Gary Weitzen, executive director of POAC (Parents of Autistic Children) also located in Brick, has been promoting the event ever since to parents within the community. I found out about it four years ago while on their website and brought Justin, my then five-year-old son with moderate autism, to give surfing a whirl. The activity was not met with a great deal of enthusiasm (understatement of the year), and although we tried on subsequent years, Justin never took to it. Fortunately, he has his love of all things equestrian. We’ll leave the waves to his little brother.

And truly, the ocean was his to conquer. He thrust on his life jacket with an air of total confidence, took the hand of one of his new friends, and headed down to the tide’s ebb and flow with ease. He only attempted to master the waves once, but for the first time he managed to stand for a few seconds, moments which to his mom seemed like a glorious eternity. Zach willingly complied with directions to lay back down and ride this one in, and to his delight and mine, he did.

He even took the guys up on their subsequent offer to ride their wave runner. This kid is fearless.

All too soon it was time to head home for dinner, but I know my son left with a sense of pride and accomplishment (and a stunning medal to boot). After attempting to make friends with everyone on the beach we gathered up our gear, and headed back to the car. Through the grace of Brick Parks and Recreation and POAC Autism Services he’s pushed himself to accomplish something new, and has mastered a new skill, one I hope will continue to bring him joy and pride in the years to come.

For information on activities for children with autism, check out POAC’s website at:  www.poac.net

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 11, 2012

POAC Autism Services Walk-a-thon 2012

Posted in Life's Little Moments tagged , , , , , , at 8:57 am by autismmommytherapist

Yup. It’s that time of year again where I hit up people for money.

I know. I’m already asking people to come to my play to support POAC Autism Services, and really, I should just shut up now. The truth is however, while I hope my little artistic endeavor generates a veritable boatload of money for my favorite autism organization, there are a number of fundraising walk-a-thons coming up which traditionally provide the lion’s share of their income. Since POAC receives absolutely no state or federal grants, they rely predominantly on this handful of events so that they can continue to offer training, services, and recreational events at little or no cost to the autism community.

And even if you have no connection to anyone with a child with autism, it’s still a great way to exercise.

Due to the fact that I’m producing, directing and acting in a play I wrote just weeks before our local event (yup, insert second shameless plug here) I will not be putting together my own team this year. My lack of initiative to form one is also due to the fact that since we moved back to New Jersey, pretty much everyone we know has their own child with autism, and will be walking for him or her on their own team.

So this year I’m glomming onto the team of my friends Mary and Scott Craig, both of whom work tirelessly to support the efforts of POAC. Mary serves on the POAC Board, and both husband and wife spend tremendous amounts of time helping to put together fundraisers to keep the organization going. It’s an honor to walk with them, and for their son Will.

Plus, I just like them.

So, if you’re looking to make a donation to a fantastic organization, or wish to honor a child or family dealing with autism, please see the link below to my walk-a-thon web page. I’ll be participating in the Lakewood BlueClaws event on May 5th with Zach and my friend Cindy, who has also generously offered her time this year. And if contributing is not an option, please consider coming out to any of the five walks listed on the POAC website, and simply show your support.

Trust me, autism on any level is not an easy road. We’d really appreciate it.

I’ll get off my soapbox now, and go feed my hungry kids. Before I go I’d like to share one final thought- that POAC Autism Services has had a direct and profound influence on my children’s education, leisure time, and their happiness. They have done the same for numerous families throughout New Jersey as well. I am truly grateful for their existence, and for all the services they provide.

And for anyone who makes a contribution of any kind, I’d like to extend my heartfelt thanks and gratitude

My POAC walk-a-thon web page

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!

April 1, 2012

Autism Awareness Month

Posted in Life's Little Moments, My Take on Autism tagged , , , at 9:25 am by autismmommytherapist

“Mommy, can you have a little autism?” my youngest son asks, all while sitting at our kitchen table twirling a giant plastic T-Rex around by its tail, a toy I am certain will soon end up landing on my face. I think quickly about how I want to respond to this, and I say “Sure honey, some people with autism can talk just like you do”, because the issue Zach keeps coming back to over and over is ‘will Justin ever talk’. Apparently this satisfies my boy, because he forgets I’ve just asked him not to fling that huge, disturbingly life-like creature in my general direction. This time, however, the outcome for his “pet” is not so wonderful.

Clearly, just like in the Jurassic Period, tyrannosaurus rex still can’t fly.

After I’ve rescued his friend from the floor (and applied no less than two Elmo band-aids to his “wounds”), Zach gets down from his seat, and decides to build a fort for his dinosaur family in the living room. I begin washing up the detritus of ham and gluten-free/dairy-free oreos, and as so often happens, my mind begins to wander (so far, it’s always returned). As soapy suds wash away the evidence of a meal consumed, I think about how far Zach has come in his own understanding of autism.

Initially, our inquiries as to what he thought about it were met with complete silence. Now, he talks about it all the time, from discussing Justin’s actions with replaying the same scene over and over on his DVD (“that’s the autism, mom”), to the fact that he said “thank you” to Zachary the other day on his iPad (“Justin DOES talk!”). My boy is truly aware of autism in his smaller world, and within the larger confines of the world around us.

And as I look around, at least within the community in which we live, everybody else seems to be aware as well.

I have to say however that most of what I see around us transcends awareness, has in fact moved past even simple “tolerance”, has even begun to dabble in the waters of true acceptance. I see evidence of this evolution at the movie theater, where a mom with six young girls in tow graciously let me jump ahead of her in the popcorn line, because she could see how anxious Justin was for his carb fix. I witness this acceptance in the children of my neighbors, all of whom always emit a warm greeting for my eldest son, and some of whom continue to ask if he’d like to shoot a basket with them (Justin will eternally decline).

I’ve had a broad view of our little corner of the world’s take on autism as I’ve handed out fliers for my play, with every single store-owner registering only kindness as I’ve described my family, and explained my desire to support POAC Autism Services with my writing. Most importantly, I’ve registered this acceptance of Justin’s differences by his neurotypical peers, during our trips to stores, bowling alleys (he’s quite good now), and of course, his perennial favorite, our local boardwalk. I will admit, sometimes his loud vocalizations and somewhat staggered gait are met with averted eyes. More often than not however, he receives a genuine smile, one which usually is shared with me as well. Sometimes, I even get a heartfelt teen-age comment of “he’s so cute!”.

Which of course, he is.

I feel the world has evolved so much since the dark days of Justin’s diagnosis almost eight years ago, yet of course, we have new roads to forge, more prejudices to destroy. What I continue to see however, the critical point that stirs up so much hope for me, is the constant commitment by those in the autism community to put aside our differences, and instead do our part in raising awareness about our incredible kids. From requests on Facebook to look past our conflicts, to illuminating our homes in blue for the fifth World Autism Awareness Day on April 2nd, to fighting and demanding legislation be put through for the next generation, I see everyone doing their part. And I watch gratefully as our community conducts these actions in far more harmony than I’ve ever witnessed before.

Finally, most importantly perhaps, I see so many people not directly touched by autism trying to lift our lives just a little bit, and do their part by displaying compassion, not condescension.

April is Autism Awareness Month. My husband and I will be turning our porchlight blue, in honor of the commemorated day, the month, and of course, our beautiful and unique children. Acquiring a light bulb sporting a filament that will bathe our home in blue is an easy act, a quick trip to Walmart or Target, a simple twist of a wrist to install. If you’d like to show your support, it’s a wonderful way to let our community know that you care.

And of course, where my kids are concerned, I’ll always gladly accept those smiles too.

As always, thank you for your support!

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/

March 5, 2012

Robin Sims Trailblazer Award

Posted in Life's Little Moments, My Take on Autism, Uncategorized tagged , , , , , , , , , , , , , , , , at 11:06 am by autismmommytherapist

(Billy and Bobbie Gallagher)

Music from “The Godfather” serenaded us as me and my husband secured our seats, wending our way through brightly decorated tables which were filled by the attendees from this year’s annual POAC Autism Services Gala. The theme this year was the roaring 20’s, and amidst zoot suits and faux furs, feathers and fedoras, the guests not only showed their support for children and adults with autism by their attendance, but many enjoyed a much-needed night out as well. This is my second year participating in this event, and while Gary Weitzen’s (Executive Director of POAC) welcoming speech is as usual filled with gratitude, there was a bit of a twist this year, an emphasis on an integral issue those of us with children on the autism spectrum must always remember.

All of us owe an enormous debt to those parents who came before us.

It’s a sentiment I write and think about often, as I reside firmly in the younger generation of children with the disorder, being the mother of two boys whose ages remain in single digits. I’ve always said that although my family’s journey has been arduous to say the least, the difference between our path and that of families with offspring at least ten years older than mine cannot compare. A decade or more before my eldest son was born, parents and others advocating for autism services both in government and in the schools had little or no support. In effect, they were starting from scratch so their children could receive even the bare minimum of assistance in terms of education, insurance coverage, and employment and residential opportunities when they reached adulthood.

Despite the difficulties of the challenges laid before them, many of the parents of children with autism who preceded me fought long and diligently to improve all areas of their children’s lives, including changing society’s perspectives on what individuals with autism can contribute to the world at large. They were trailblazers of the highest order, and every time I put my sons on their school busses, attend a recreational activity provided by POAC, or receive reimbursement for necessary therapies from our insurance provider, I try to remember to take a moment to mentally thank the individuals who eased my boys’ way with their efforts.

And Saturday evening, Gary Weitzen and POAC took the time to thank two individuals who exemplify exceptional advocacy.

This year, several of POAC’s board members created the Robin Sims Trailblazer Award to honor a relentless autism advocate, who was herself the mother of two children on the autism spectrum. Robin served for over a decade on the board of the VOR (the only national organization to advocate for a full range of quality residential options and services), and as their Board President until she passed. She also served as a member of the NJCDD, the New Jersey Council for Developmental Disabilities, which is the governing council for the Division of Developmental Disabilities. Robin fought relentlessly to ensure that families, regardless of their respective ethnic and financial statuses, remained an integral part of the decision-making process regarding the fate of their adult children with disabilities.

She was a force to be reckoned with and an inspiration to all who knew her, and a beloved sister, daughter, wife, and mother. Literally days before her death, members of Congress made time to meet with her regarding the Developmental Disabilities Assistance and Bill of Rights Act, listening to her impassioned pleas as she traversed the halls of the Capitol in her wheelchair. Tragically, she lost her fight to cancer seven months ago, leaving a void both within her family and within the autism community that will never be completely eradicated. She was utterly devoted to her two adult children with autism, and will be mourned by all who knew her.

Despite her myriad contributions, when it came time to select the first honoree for the Robin Sims Trailblazer Award, the choice was obvious. Bobbie Gallagher, an Ocean County resident and herself a mother of three, two of whom have autism, was the individual who most represented the same caliber of commitment and constancy in fighting for the rights of all individuals touched by autism spectrum disorders.

Our honoree, who by her own admission could not have accomplished all that she has without the help of her husband Billy Gallagher, has been working toward improving the lives of individuals with autism since her own daughter was diagnosed in the early nineties. She and her spouse were instrumental in soliciting the CDC to investigate a seeming cluster of children diagnosed with autism residing in Brick, NJ. While the study was inconclusive, it was the genesis for other vital studies that have assisted those with autism in the Garden State.

Bobbie’s work and alliance with United States Congressman Chris Smith, himself a tireless autism advocate, helped bring about CARA (the Combating Autism Reauthorization Act), which was passed by Congress in 2006, and H.R. 2005, a bill created to reauthorize the initial CARA act. She is a BCBA (Board Certified Behavior Analyst) who has offered many hours of her time to conduct trainings for parents and professionals through POAC Autism Services, as well as other autism organizations. For several decades, she has made an indelible contribution to our community.

In addition to all the “serious stuff”, she’s also a great mom, tough as nails, and a lot of fun.

I have it on good authority that Robin Sims, were she still with us, would have been thrilled by the selection of this particular individual. As I watched Bobbie receive her award at the Gala Saturday night, an honor capped off by the knowledge that the American flag had been flown over the Capitol in both of their names, I reflected on the torch that will soon be passed to my generation. We have to continue to make whatever contributions we can, both minute and monumental. It is imperative that we forge ahead on the path that has been set before us, one created by a labor of love.

And at the conclusion of Bobbie’s moving speech, as an entire room stood to honor both women in gratitude, I reminded myself it was one of those moments to say “thank you”, just this time out loud.

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