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.

January 31, 2012

POAC Gala 2012, a Call for Contributions

Posted in Life's Little Moments tagged , , , , , , , , , , , , , at 11:04 am by autismmommytherapist

(Gary Weitzen, Executive Director)

It’s a brisk, wintry Saturday evening. Feathers and fedoras abound for the “gangster ball” theme, drinks are flowing, and the driving beat of good tunes makes it impossible not to claim space on the dance floor. No, this is not a scene from Boardwalk Empire. It’s a sneak peak at the POAC (Parents of Autistic Children) Gala, which is celebrated annually at the Eagle Ridge Golf Club, and will take place this February 25th at 6:00 PM.

I will not being wearing a flapper dress. They are not that becoming when you’re short.

In a few weeks several hundred people will soon gather to support POAC, as they endeavor to raise money to support the multitude of programs they continually offer to those within the autistic community. These programs range from providing educational supports to parents, teachers, and school personnel, as well as offering recreational activities to children with autism and their siblings. POAC receives no state or federal funds, and its existence relies entirely upon private donations.

Most of these programs remain free to anyone who works with or loves a child with autism.

I can speak from personal experience about what POAC has meant to me, and to many families in the area. When we relocated back to New Jersey six years ago, our eldest child had only had his autism diagnosis for about a year. While living in the Washington, DC area I had struggled to find activities to do with my son. I also struggled to find free educational opportunities with which to enhance his in-home ABA program, the methodology many people use to instruct autistic children.

(Simone Tellini, Training Coordinator)

As soon as I found out about POAC I realized we immediately had access to a wonderful support group, a variety of free educational workshops, and recreational opportunities in an atmosphere that was always welcoming to my child. POAC gave me and my son an outlet on weekends, and through one of their fundraisers a few years ago at Rein Dancer Therapeutic Riding Center, they were instrumental in showing me my eldest’s love for all things equine as well.

Most importantly, POAC gave us a second family.

The price of a ticket to attend the gala is $150, but there are other ways to contribute as well. Each year at the Gala a silent auction is held, and POAC is in need of donations for this year’s fundraiser. The Gala committee also holds a gift auction and raffle as well, and POAC would greatly appreciate any contributions of business goods or services. Finally, another way to contribute would be to place an ad in the Journal that is distributed to all guests the night of the event.

Any contribution you or your company make would benefit children with autism and their families tremendously.

If you are interested in participating, donations can be brought to the POAC office, or will be picked up for you. Please contact POAC at:

1999 Route 88

Brick, NJ 08724

(732) 785-1099

Thank you so much!

December 12, 2011

POAC Gala 2012

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , at 10:11 am by autismmommytherapist

(Gary Weitzen, director of POAC)

I’m always on the lookout for unique holiday gifts (especially ones I don’t have to wait in line to purchase). So, as I was waiting for Zach to finish dance class last Friday at the Rebecca Martin School of Dance I listened with some interest as the other parents were discussing their takes from Black Friday and Cyber Monday (in my house, these are my husband’s domains, as he is a wizard with a coupon). That lovely woman from the California Walmart came up (you know, the one who found it absolutely necessary to Mace people, because that of course is the Christmas spirit), as did the fabulous bargains some people had acquired. A few of their prizes led to a couple of ideas for two little boys who most certainly are on Santa’s “nice list”.

Bet you can guess who they are.

As I relaxed on the unforgiving bench, grateful for an entire forty-five minutes of sitting down AND adult conversation, one of POAC’s members and volunteers casually mentioned an incredibly creative gift idea that a high school classmate of his had offered to him and their friends. It seems this generous woman had decided to buy enough tickets for the upcoming POAC Gala to fill three tables, simultaneously donating quite a large amount of money to a wonderful autism organization, while providing a great night out for friends.

I’ve decided she’s brilliant.

As I sat and listened to her “back-story” (just a nice person, no autism connections whatsoever), I thought about what a fantastic present this would make for someone, particularly that person who has “everything”. Tickets are around $150 a pop (so clearly this gift would be more than just a stocking stuffer), but it would at once provide the recipient with a great night out, and help an incredible local autism organization continue to provide trainings, workshops, and perhaps most importantly, those recreational events that fill a void for so many autism families. I thought it was such a great idea that I’d write about it here, and attach the post I wrote about the Gala last February.

This year it will be taking place once again at the Eagle Ridge Golf Course in Lakewood, on February 25th at 7:00 PM. To purchase tickets please contact POAC (Parents of Autistic Children). Please forward this idea on to anyone who might be interested, thank you, and happy holidays!

(Me and my guy)

Eagle Ridge Golf Course is a beautiful venue, and thanks to the diligent efforts of the gala planning committee and their staff, the entire affair was lovely. Faux fires spaced strategically around the rooms rid the air of that damp winter chill, the open bar was, unlike my twenty-something remembrances, not thirty people deep, and the appetizers were delicious and plentiful (did I mention the open bar?). Due to the benevolence of one of the primary volunteers for the organization Jeff and I were seated at a primo table, which although its proximity to the DJ would render me temporarily deaf for a few hours that night, did afford me the opportunity to survey the room and its occupants. I’d have to say it was almost a giddy crew, including many parents with offspring on the spectrum, grateful for a break from the usual grind.

In general, when it comes to entertainment, we are a people easily pleased.

After somewhat reluctantly tearing ourselves away from the hors d’oeuvres and cocktail hour (free samosas, yum!), me, my husband and a few friends I’d been fortunate enough to have assigned to our table made our way to our seats, and settled in. There was already food set before me which made me inordinately happy, and once most of the assembled guests had taken their places, the lights subsequently dimmed. Gary Weitzen, the president of POAC, took the floor. He then proceeded to deliver a speech that momentarily made me abandon my salad AND my breadstick.

Trust me, that is no small feat.

As he dove into his recital of POAC’s myriad accomplishments over the last decade, he began with an anecdote many of my readers can relate to, one that made me regret not bringing to the party both my mascara and my lipstick. In a moving tribute to his child, he shared with us the devastating day a specialized pediatrician had told him, and his then three-year-old son, that the latter had major developmental delays. I wrenched my eyes away from Gary for just a few moments during his discourse, glanced around the dimly lit room, and noticed many heads nodding, viewed multiple bodies braced against chairs in anticipation of what surely was to come. Of course the crushing blow arrived in the form of an almost casual chaser, “your son has autism”, which quickly concluded the physician’s visit. Sadly, I am certain our POAC president, even in this day and age, is not alone in his suffering through the brevity, and coldness, of that concise phrase.

Gary shared with us that he drove home alone from Philadelphia with his son, mired in a fog that he couldn’t seem to dissipate with wiper fluid or headlights, until he realized its origins commenced with his own eyes. This was 1997. There were not as yet thousands of agencies, websites, blogs, and chat rooms for parents to commence their descent into the labyrinth of scant local services. There were autism organizations throughout our state, but there was nothing reminiscent of what we today know of as POAC. Free, plentiful trainings for teachers and parents throughout New Jersey, did not as then exist. Law enforcement did not readily have the option to be instructed in the signs of autism, were not frequently educated in the ways in which an individual on the spectrum might react in a stressful situation. Perhaps, most importantly, there were precious few opportunities for parents to congregate with their children in safe environments for recreational purposes, always for free.

Rather than capitulate to that reality, Gary Weitzen transcended that fog, and rose to fill the void.

I could share with you that POAC, in addition to offering the services listed above, is the largest provider of free autism training and education in the entire state. I could inform you that its classes for teachers and aides, focusing on the core deficits of autism, namely communication, behaviors, and socialization issues, have literally transformed entire classrooms. Finally, I could regale you with the joy I feel every time I watch my eldest child mount his ride, tell you that his intense love for the equestrian life would never have been discovered if POAC hadn’t pursued a local horseback-riding farm, and requested that they host an event.

I could tell you the latter, but then I’d just be bragging..

Instead, I’ll share this with you. I am so thrilled this organization exists in its many manifestations, with its bountiful services at my fingertips. I am so intensely grateful for the numerous companies who fund its endeavors, many of whom have only tenuous connections to autism through a valued employee. Watching my friends, and numerous people I’ve come to have a great deal of respect for whoop it up on a dance floor was a joy (and yes, me and my husband were most certainly included in that gyrating posse). In an act of over-the-top abundance I not only won a basket through the elaborately constructed raffle (then had to be educated as to who Ed Hardy is, it’s sad getting old), but I believe I’ve also scored a new playdate opportunity for my youngest, just one town over. I could tell you, with all honesty, that my oft-filled wine glass overfloweth.

But I’ll relate this to you as well. At the end of a beautifully constructed film montage, resplendent with unforgettable images of our children and their triumphs, one phrase, recited by those young voices able to enrich our lives with intelligible sound, rang honest and pure. In a world where often nothing is certain, this truth is indelibly clear.

We are family.

For information on how you can volunteer for POAC, or simply enjoy their events, please visit the website at:

www.POAC.net

March 1, 2011

POAC Gala 2011

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 12:44 pm by autismmommytherapist

A few weeks ago, Oprah announced to the world that she had located a long-lost sister she’d never known existed. Once I picked myself up off the floor (because really, doesn’t Oprah know EVERYTHING?), I admit I deviated slightly from my stimulating morning schedule of writing/laundry/Facebook, and delved into her story. It turns out Oprah has a half-sibling nine years her junior, a family member until recently kept hidden, completely lost to her. I can imagine she must have experienced ambiguous feelings surrounding the discovery, perhaps joy at finding a part of her heritage, perhaps regret at not having known her sister sooner (trust me, I do not presume to comprehend the inner workings of Oprah’s mind, I am certain it must be illegal). All I know for sure is that the universe granted her a new branch of family, with all of its inherent similarities and differences, residing practically in her own backyard.

And if you have a child with autism in New Jersey, Parents of Autistic Children (POAC) can be that new leaf on your family tree for you as well.

This past Saturday evening my husband and I had the pleasure of being invited to the annual POAC gala, at the Eagle Ridge Golf Club in Lakewood, New Jersey. I was, as usual, deliriously delighted to get out of my house (it was the first time I could breathe without steroids in a month, it doesn’t take much to excite me these days). The boys’ Grandma and Aunt Kate had been kind enough to volunteer to keep them alive so we could attend, and frankly I couldn’t wait to arrive at our destination (free babysitting, drinks, dancing and prizes in lieu of me in my bathrobe watching 30 Rock on our DVR, what’s not to like?). After a brief skirmish with my “bra master” that Jeff ultimately won (phooey on that first grade teacher who told him “brains yes, hands no”) we were finally ready to depart, and for once, nobody threw themselves across my stockinged legs and pinched feet and begged me not to go.

(No, Jeff’s not a giant, he’s just a yard taller than me)

All hail the power of Grandma.

It’s a beautiful venue, and thanks to the diligent efforts of the gala planning committee and the staff at Eagle Ridge, the entire affair was lovely. Faux fires spaced strategically around the rooms rid the air of that damp winter chill, the open bar was, unlike my twenty-something remembrances, not thirty people deep, and the appetizers were delicious and plentiful (did I mention the open bar?). Due to the benevolence of one of the primary volunteers for the organization Jeff and I were seated at a primo table, which although its proximity to the DJ would render me temporarily deaf for a few hours that night, did afford me the opportunity to survey the room and its occupants. I’d have to say it was almost a giddy crew, including many parents with offspring on the spectrum, grateful for a break from the usual grind.

In general, when it comes to entertainment, we are a people easily pleased.

After somewhat reluctantly tearing ourselves away from the hors d’oeuvres and cocktail hour (free samosas, yum!), me, my husband and a few friends I’d been fortunate enough to have assigned to our table made our way to our seats, and settled in. There was already food set before me which made me inordinately happy, and once most of the assembled guests had taken their places, the lights subsequently dimmed. Gary Weitzen, the president of POAC, took the floor. He then proceeded to deliver a speech that momentarily made me abandon my salad AND my breadstick.

Trust me, that is no small feat.

(Gary Weitzen, president of POAC, and all-around good guy)

As he dove into his recital of POAC’s myriad accomplishments over the last decade, he began with an anecdote many of my readers can relate to, one that made me regret not bringing to the party both my mascara and my lipstick. In a moving tribute to his child, he shared with us the devastating day a specialized pediatrician had told him, and his then three-year-old son, that the latter had major developmental delays. I wrenched my eyes away from Gary for just a few moments during his discourse, glanced around the dimly lit room, and noticed many heads nodding, viewed multiple bodies braced against chairs in anticipation of what surely was to come. Of course the crushing blow arrived in the form of an almost casual chaser, “your son has autism”, which quickly concluded the physician’s visit. Sadly, I am certain our POAC president, even in this day and age, is not alone in his suffering through the brevity, and coldness, of that concise phrase.

Gary shared with us that he drove home alone from Philadelphia with his son, mired in a fog that he couldn’t seem to dissipate with wiper fluid or headlights, until he realized its origins commenced with his own eyes. This was 1997. There were not as yet thousands of agencies, websites, blogs, and chat rooms for parents to commence their descent into the labyrinth of scant local services. There were autism organizations throughout our state, but there was nothing reminiscent of what we today know of as POAC. Free, plentiful trainings for teachers and parents throughout New Jersey, did not as then exist. Law enforcement did not readily have the option to be instructed in the signs of autism, were not frequently educated in the ways in which an individual on the spectrum might react in a stressful situation. Perhaps, most importantly, there were precious few opportunities for parents to congregate with their children in safe environments for recreational purposes, always for free.

(Simone Tellini, Training Coordinator, and a POAC mover and shaker)

Rather than capitulate to that reality, Gary Weitzen transcended that fog, and rose to fill the void.

I could share with you that POAC, in addition to offering the services listed above, is the largest provider of free autism training and education in the entire state. I could inform you that its classes for teachers and aides, focusing on the core deficits of autism, namely communication, behaviors, and socialization issues, have literally transformed entire classrooms. Finally, I could regale you with the joy I feel every time I watch my eldest child mount his ride, tell you that his intense love for the equestrian life would never have been discovered if POAC hadn’t pursued a local horseback-riding farm, and requested that they host an event.

I could tell you the latter, but then I’d just be bragging.

Instead, I’ll share this with you. I am so thrilled this organization exists in its many manifestations, with its bountiful services at my fingertips. I am so intensely grateful for the numerous companies who fund its endeavors, many of whom have only tenuous connections to autism through a valued employee. Watching my friends, and numerous people I’ve come to have a great deal of respect for whoop it up on a dance floor was a joy (and yes, me and my husband were most certainly included in that gyrating posse). In an act of over-the-top abundance I not only won a basket through the elaborately constructed raffle (then had to be educated as to who Ed Hardy is, it’s sad getting old), but I believe I’ve also scored a new playdate opportunity for my youngest, just one town over. I could tell you, with all honesty, that my oft-filled wine glass overfloweth.

But I’ll relate this to you as well. At the end of a beautifully constructed film montage, resplendent with unforgettable images of our children and their triumphs, one phrase, recited by those young voices able to enrich our lives with intelligible sound, rang honest and pure. In a world where often nothing is certain, this truth is indelibly clear.

We are family.

For information on how you can volunteer for POAC, or simply enjoy their events, please visit the website at:

www.POAC.net