April 3, 2014

World Autism Awareness Day Part Two

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , at 11:22 am by autismmommytherapist

Zach in a Bath 014

Today, as with every day, my heart is bursting with pride for my eldest son Justin, who has severe autism.  This week his private autism school hosted a news conference on the eve of World Autism Awareness Day, an event held by Congressman Chris Smith, co-chair of the House Autism Caucus, and Autism New Jersey.  As with any news conference there is usually a photo opp, and my son was selected to be the “face of autism” that day (the link is below.)  There are two beautiful pictures, a close-up of him apparently contemplating very deep thoughts, and a precious one of him working with his talented and adored teacher.

 

The accompanying article highlights the high rate of autism in my home state, which is 1 in 45 children in New Jersey, the highest rate in the country.  It outlines the work my friends Bobbie and Billy Gallagher did almost two decades ago to bring the rising prevalence of autism in the Garden State to Representative Smith’s attention, an act which contributed to bringing about Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000 (the first comprehensive federal program centered around autism.)  I am so proud of the Gallaghers for being pioneers well before autism was a household word, and thrilled that my son’s school was given the honor of hosting the conference.

 

But as I mentioned before, my heart sings for my son.

 

Of course it’s fun that his handsome countenance was featured in the Asbury Park Press, the paper of my childhood.  I admit, it was a thrill to see him both online (and imagine this) in hard print as well.  Quite frankly a few tears were shed yesterday, from both me and my husband too.

 

But I’m writing about this today not to brag about my son getting media time (okay, maybe it’s a little bit about that.)

 

I’m writing to you today about hope, and perserverance and love, and never giving up the fight to carve out the best life possible for him, the one he was born to lead.

 

Ten years ago my son was diagnosed with severe autism.  He could barely tolerate anyone in his home, was phobic of strangers, had severe difficulties pairing with therapists, and clung desperately to his parents.

 

Two days ago he noticed the photographers, acknowledged them briefly, and went about his business of school with a smile.

 

Ten years ago my son screamed and sobbed whenever anyone tried to work with him, no matter how desirable the reinforcers being offered to him.

 

Two days ago he worked diligently (and most importantly,  joyfully) with his teacher for his coveted bagel chips, but mostly for the love of  learning.

 

Ten years ago we watched as his first birthday came and went, and so did the few vowels and consonants we held so dear.

 

Two days ago he used an iPad to communicate his wants, and is even beginning to fashion words for us, including two-word sentences which seem like miracles.

 

Ten years ago I thought I’d never see him smile.

 

Today, and every day for the past few years, I am witness to the unearthing of his ebullient soul.

 

Yesterday I cleaned out our local 7-11 of every Asbury Park Press they had (we have a lot of relatives,) and I am certain the photo of my son’s slight smile will make it into his scrapbook.  There were phone calls to grandparents, emails to friends, and of course the obligatory status update on Facebook.

 

As I mentioned before, I’m a proud momma of an autistic child.

 

But the beautiful part of all this is sometimes I need a not-so-gentle reminder to celebrate how far we’ve come, how our family was forged in fire, and now revels predominantly in peace.  My son is happy.  He loves his life.

 

My son with severe autism loves his life.

 

And nothing in the world could make me more proud.

http://www.app.com/article/20140401/NJNEWS15/304010044/Autism-advocates-urge-more-funding?nclick_che…

 

 

 

 

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February 24, 2014

Parents of Autistic Children (POAC) Gala 2014

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , at 3:57 pm by autismmommytherapist

POAC 1(Gary Weitzen, Executive Director of POAC)

This past Saturday evening I had the luxury of having a girls’ night out with a dear friend at the annual Parents of Autistic Children (POAC) gala, a celebration of fifteen years of their service to the New Jersey autism community. I was deliriously happy to get out of my house (this winter has taken its toll in more ways than one, ask my poor scale), and an event with parents of children with autism as well as autistic adults themselves was something I’d eagerly been looking forward to for weeks.

In addition to good music, good food (a pasta appetizer bar!) and even greater company I always seem to come away from this evening reenergized, more able to focus not only on the issues my two children on the autism spectrum are experiencing, but on their accomplishments as well. And in addition to eating and dancing the night away, everyone in attendance spends a good part of the night bragging about their kids’ successes to people who “get it.”

Frankly, it’s a fabulous perk of the night, right up there with those addictive chocolate-covered strawberries Eagle Ridge always serves at the end.

As my friend Babette and I settled into our table I prepared myself for POAC Executive Director Gary Weitzen’s annual speech (he never fails to make me cry at least once), searching through my night purse for a pen to take notes as my memory (and many other things) aren’t what they used to be. As usual, with his words I was rewarded. Gary did a wonderful job outlining the myriad ways in which POAC, which is the largest provider of free autism training and education in the entire state for both teachers and law enforcement officials, also provides a myriad of free recreational events for families.

POAC 2(Me, Gary, and fabulous friend Babette)

He also recounted a moving anecdote about his wonderful adult son Chris, regaling us with his desire to hear his then four-year-old child speak just one single word, a wish thankfully granted. Gary went on to inform us that for the past decade-and-a-half POAC had been building a parachute for families, and that now their focus would also include job and residential opportunities autistic individuals over twenty-one. As always, POAC is always looking both to improve their services, and to plan for the future of our children.

I have no doubt they’ll come through for all of us.

The night’s speeches were capped off by a moving slide show featuring autistic children and their families at various events, as well as the volunteers who single-handedly make POAC such a successful autism organization. Traditionally this hails my second crying spectacle of the night, and for once in an effort to preserve my mascara I permitted myself to turn away and take a good look, a really good look, around the gorgeously decorated room.

As I scanned the tables I saw fierce and Congress-celebrated autism advocate Bobbie Gallagher rubbing the shoulder of her beautiful adult daughter Alanna, and couldn’t help but recall how she’d helped me when I first moved to our town, assisting me in navigating the special education component of our school district. I watched as Simone Tellini (Gary’s right hand at POAC) was held rapt by the power point, and thought of the struggles she’d shared with me about her adult son with autism, how she’d moved mountains for him during a time when nobody really knew much about the disorder or truly seemed to care.

As I shifted in my seat I felt behind me the presence of Geoff and Roe Dubrowsky, two advocates who have advised politicians and served on every local, state and federal committee known to man, who also have an adult child on the spectrum. I truly looked around the room at one hundred and fifty people in their finery, all here to support one another as well as the organization hosting them.

I entered that room and saw it mostly full of strangers. By the end of the presentation, I felt myself to be an integral part of a growing, vibrant, and incredibly committed community.

POAC 4(Geoff Dubrowsky, Gary Weitzen, Roe Dubrowsky)

I’ve been a POAC member since shortly after I moved here in 2008, and I cannot emphasize enough how much this organization has meant to my family, and to countless others in the state. They are a well-spring of information, and provide those all-important recreational events for families in a safe environment, where no child or adult is ever judged. I am truly grateful to them for their continued support, and most importantly for the friendships I’ve made there, men and women whose acceptance, kindness, and humor have helped get this family through some dark times into the light.

It’s possible I appreciate their humor the most.

Whether you’ve had the “autism experience” for over a decade as I have, you have a child who’s newly diagnosed, or you’re simply looking for a wonderful place to volunteer, I can’t recommend POAC enough. I’ll list their contact information below, and I encourage you to reach out, whether it’s to gain help, or to offer yours. We are a community unto itself.

And if you’re seeking a community who cares, you’ve found your home.

Contact POAC at www.poac.net

 

April 19, 2013

Autism Awareness Month- A Celebration of Autism Advocates

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

vince scanelli

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

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

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

Vincent Scanelli

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

April 12, 2013

Autism Awareness Month/Celebrating Autism Advocates

Posted in AMT's Faves, Fun Stuff tagged , , , , , , , , , , , , , at 10:03 am by autismmommytherapist

POAC Gala 009

Ed. Note:  April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism. As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals. Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the second interview in the series.

 

Gary Weitzen

Gary Weitzen is the Executive Director of POAC Autism Services (Parents of Autistic Children), which is the largest provider of free autism training and education in the state of New Jersey. Gary came to POAC with twenty years experience in the risk management field. In addition to his duties at POAC, for the past thirteen years he has worked for an autism program that teaches life skills to adults with autism. Gary currently serves on the New Jersey Governor’s Council for Biomedical Research. In the past he has served as New Jersey representative for Unlocking Autism, and Vice President of Princeton Autism Technology. He is frequently called upon by the media to provide his expertise on autism, and has given presentations to tens of thousands of people across New Jersey. Gary has three three children. His eldest son Christopher has autism.

Kim:  How did you come to be such a strong autism advocate?

Gary:  It all started with my son Chris, who is eighteen, and was diagnosed at age three-and-a-half. Before Chris, I had never known another child with autism. Just after he was diagnosed I attended an autism conference, and I looked around and saw a thousand other people sitting around me, all there for the same reason. I remember the presenters said they didn’t know anything about our kids back then. That’s when I knew I had to do something for the kids who had autism at that moment.

Kim:  You are the Executive Director of POAC. Can you describe the services POAC provides to children, parents, teachers, and law enforcement officials?

Gary:  POAC provides training for parents and families to help increase functional communication, decrease problem behavior, and increase socialization for their children with autism. We also provide training for teachers, paraprofessionals, and other service providers in evidence-based teaching procedures for individuals with autism and other developmental disabilities. Basically, we help teachers become even better educators for students on the autism spectrum. We also provide training to members of the general community who come in contact with individuals with on the spectrum every day. Through our Autism Shield Program we’ve trained 14,000 police and firefighters, and every year we get calls saying the raining saved the life of a child with autism.

 

Kim:  What would your ten-year plan for POAC include?

Gary:  I have some big ideas. I’d like to see us have a large facility or center, with a gym and a lecture hall for trainings, and a stage where the kids could put on plays. It would have a huge kitchen, and a computer center. We would open our doors to kids and adults with all different disabilities, that’s how we are. It would cost a few million dollars, but could make such a difference in kids’ lives.

Kim:  What are your dreams for your son?

Gary:  Chris has come so far. One year from now I won’t have changed much, but Chris will have made even more progress. Over the next ten years I imagine him getting a job, getting a paycheck, and paying taxes. Right now about 80% of the autism population is unemployed, and yet the vast majority of people with autism could contribute to society. We know what we need to do, and with the right funding, and the right people at the table, we could do it. Chris’s life is nothing but joy. He’s happy, and that’s all that matters.

April 6, 2013

Celebrating Autism Advocates

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , , , , , , , , , , , at 11:41 am by autismmommytherapist

Bobbie 002

April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three advocates who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism. As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals. Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. All three were recently interviewed to share their experiences. Below is the first interview in the series.

For the past two decades, Bobbie Gallagher has been advocating for autistic individuals. Her actions have led to positive changes in public schools, investigations into the high prevalence of autism in her home town of Brick, NJ, and federal legislation to support autism research and care. She was recently honored by U.S. Representative Chris Smith of New Jersey, who successfully petitioned to have the American flag flown over the US Capitol in honor of her autism advocacy. Bobbie is a Board Certified Behavior Analyst (BCBA) and owner of the Autism Center for Educational Services (ACES), which assists parents and educators in developing behavioral programs for autistic children (www.autismcenterforeducationalservices.com). Bobbie is the mother of three children, including a twenty-one-year-old girl and a nineteen-year-old boy with autism.

Kim: How did you come to be such a strong autism advocate?

Bobbie: “There are really two main reasons. First, we have two children with autism, and there is no autism in our family. We can trace back our family tree a long time on both sides. I kept thinking something had to have happened. My husband and I got involved with a parent support group run by POAC in Brick, and we realized that the numbers of children with autism in our town had grown so much we had to move the support group to a much bigger room. It motivated me to find out what was happening in Brick.”

“I soon found out that life outside our home was much harder than inside because of all the people we had to deal with to get help for our kids, and to investigate this cluster in Brick. We eventually made it all the way to the federal government with studies conducted in our town, but nobody gave us any answers. I’ll never forget receiving a brochure from the Physicians for Social Responsibility, who sent us a document entitled “Inconclusive by Design.” We never did get any reasons for why there was such an increase, but I’m very proud we made it to the federal level with the investigation.”

“The second reason I became such a strong advocate was due to the public school system. We sent our first child with autism out of district, but decided after a while we didn’t want her there anymore, and didn’t want to send our second affected child there either. That was the first time someone told us our district had its own program. After that I started bringing the New Jersey Administrative Code with me to meetings, because people didn’t even know what our kids were entitled to. I’ve found the hardest part about continuing to fight all the time is that we may get change for one child, including a better education and better services, but the schools think that what they provide for five other kids is good enough, and they don’t make broad changes.”

Kim: Tell me a little about your work with U.S. Representative Chris Smith of New Jersey.

Bobbie: “Chris got involved with us right away after we met with him and showed him surveys we had done about the numbers of autistic individuals in Brick. He called the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to get them involved, and then we all met with officials in Washington, DC. He helped open doors for us. With the assistance of co-chair U.S. Representative Mike Doyle of Pennsylvania, he founded the bipartisan Coalition on Autism Research and Education (CARE).

He was also the primary sponsor for the bill HR 2005, the Combating Autism Reauthorization Act (CARA). This bill was signed into law (Public Law P.L.112-32) in 2011, and extends the Combating Autism Act of 2006 for three more years. It was a follow-up to his Autism Statistics, Surveillance, Research, and Epidemiology Act (ASSURE, Title 1, P.L. 106-310), which allowed the creation of regional centers of excellence in epidemiology and autism surveillance. Although autism had the highest numbers in the disability world, in the past, funding for other disabled groups always surpassed us. This was the first time we surpassed them in funding dollars, and it really helped.”

Kim: How does it feel to have the flag flown at half-mast over the US Capitol in your honor?

Bobbie: “It’s probably my proudest thing, even though I didn’t get to see it! I found out at the annual POAC Gala, but I was just in shock there. A couple of days later it kicked in and I just thought “that is really awesome!”. It’s my proudest moment, it means so much that people recognized what we had done. It was nice to get the recognition for our efforts. If we need to be called in to do something again, we would do it.”

Kim: Where do you hope to see Alanna and Austin in ten years?

Bobbie: “We will probably live in a different state, somewhere warmer where they can enjoy being outside. They’ll be living with us, and hopefully we’ll have enough support for them! I don’t foresee that they’ll be employed, but I do see them being happy. Alanna in particular has a full day, and a full life- she really enjoys it. Austin will always be the bigger puzzle. He is more difficult behaviorally and medically, and challenges us much more. Because of how challenging he can be, he really drives me to do what I need to do. He makes us feel like we always have to do more.”

Autism Center for Educational Services (ACES)

http://www.autismcenterforeducationalservices.com/

(732) 840-1888

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.

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.