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!

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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.