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

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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.

October 17, 2011

Aspiritech

Posted in My Take on Autism tagged , , , , , , , , at 9:24 am by autismmommytherapist

“Hon, I’m pulling out something from the paper for you to read” my husband calls to me as he stands in front of the kitchen counter, where he’s diligently clipping coupons for the week. I yell back “thanks”, and continue to supervise Justin washing his hands in the bathroom sink, a task both of my children still find fairly distasteful after all these years (must be a boy thing). I tell him to put it on my “pile” in the living room, a mound which mocks me daily as I ignore articles and magazines while I attempt to finish the most recent book in the Game of Thrones series (George R.R. Martin, you brought me back to the fantasy genre and entertained me all summer, I owe you, well, SOMETHING).

My eldest wipes his hands, then hands me the towel until I gesture for him to put it back himself (okay, technically I am the maid around here, but surely you can find the towel rack by now). Justin gives me one of his bear hugs, one of his embraces which requires me to sit down so I don’t fall over, and by the time we’ve exited the bathroom, I’ve promptly forgotten what my husband yelled to me from the kitchen.

This is not exactly shocking news around here.

I am later reminded of the existence of this article solely because my husband placed it prominently on top of the mountain of literary material which lives on our coffee table (I need my visuals). Much, much later in the day, when two boys are technically in bed for the evening and I am able to enjoy my downtime, I casually pick it up as I wait for Halloween Wars to start on the Food Network. This is a station I frequent in the hopes that I’ll absorb some of the techniques by osmosis, and they’ll translate to my cooking.

So far, they haven’t.

The title of the article from the Asbury Park Press is “Success at hiring autistic adults”, which immediately perks me up from my post-four-days-with-child haze. Along with what I like to call my “reach dreams” (adequate Early Intervention and school-age autism programs in every state, insurance coverage, and safe and appropriate housing for all), is this wish. That each adult with autism who is capable of holding a job, no matter where they fall on the spectrum, will one day be employed.

And Aspiritech, a nonprofit in Highland Park, Illinois, is just one more company working toward making a dream come true for these adults.

The article highlights several of the employees, Brian Tozzo, Jamie Specht, Rider Hallenstein, and Rick Alexander, four young men with Asperger’s syndrome. It turns out that some of the unique characteristics common to this type of autism, such as a facility with retaining detail coupled with a desire for repetition, make these particular employees incredibly skilled with computers. According to Dan Tedesco of a Connecticut-based company which used Aspiritech to test one of their iPhone apps, the workers there “exceeded my expectations”. He later goes on to say in the piece that the workers at Aspiritech had a “pride in their product you don’t usually see in this type of work.”

Apparently there are eight other clients just as pleased with Aspiritech’s work, which is a wonderful start.

The article later goes on to state that the company, founded by Moshe and Brenda Weitzberg, was founded after their son Oran, now thirty-two and a young man with Asperger’s, was fired from a grocery-bagging job. The Weitzbergs modeled their company after an organization called “Specialisterne”, or “the Specialists”, a Danish company which also hires employees with autism as their software testers. One of the testers at Aspiritech, Katie Levin, thirty-five, was not even diagnosed with the syndrome until she was an adult, was instead herself labeled as mentally ill as a child. I can only imagine what this job, and being part of this community, must mean to her.

Just reading about the existence of this company, when I think about Justin’s future and my desire for him to have a job he enjoys, holds great meaning for me.

The article is a quick read, and I put it down as the witching hour looms on cable, and edible haunted houses await me. This is just one more trickle in a rush of good fortune to befall the autism community lately, with states like California approving a bill which requires coverage of autism treatments until their federal health care law can be implemented, or (and my personal favorite) the passage of CARA. There are many more drops in our recent waterfall, too many to list here, or this would be the longest post EVER (and all of you have just so much time on your hands).

So here’s hoping that Aspiritech, and more companies like it, continue to make a splash.

October 3, 2011

Combating Autism Reauthorization Act (CARA)

Posted in My Take on Autism tagged , , , , , , , , at 10:54 am by autismmommytherapist

This past week, several momentous events occurred in the lives of the McCafferty clan. One came in the form of a wedding ceremony between my aunt and her fiancé, which I will write about soon, and probably deserves its own entire blog (not just an entry) for the richness of the story that accompanies it. The second event, which I admit will affect slightly more people, was the passing of CARA (the Combating Autism Reauthorization Act), this past September 30th.

Let’s just say champagne toasts ensued for both.

For those of you not familiar with the law, I’ll tell you that CARA was first passed by Congress back in December of 2006, under the tenure of George W. Bush. This law authorized almost a billion dollars of funding to invest in autism treatments, research, and diagnosis, and you can read more about it if you so choose at: http://www.autismvotes.org/site/c.frKNI3PCImE/b.6376831/k.ACFC/CARA.htm

I can actually remember learning of its passing in the news (and the fact that I’ve retained this information from five years ago is nothing short of remarkable). I recall thinking that finally, finally, our community was being given what amounts to a formidable amount of money, with the accompanying hope of alleviating some of the most difficult aspects of this disorder.

And believe me, we have needed every penny.

A number of other bloggers have already written beautifully about this subject, most notably Jess at DiaryofaMom. Since I have no desire to attempt to reinvent the wheel, I won’t discuss today what the elongation of this law means to me. Let’s just suffice it to say after living there for fifteen years, I consider Washington to be my second home, and I am really, truly proud that Congress collectively stood up and reauthorized an act that will bring solace to thousands of families in this country.

I am certain our Senators and Congressmen will sleep more soundly now.

Today, I will not be penning a soliloquy here on all the myriad ways this law will bring relief, from the scientists creating drugs that will hopefully mitigate some of the more daunting aspects of autism, to the pediatricians seeking to diagnose our children earlier, or even just to parents simply trying to make it through an exceptionally trying day. I would like however to personally thank two specific Congressman, Senator Robert Menendez, and Representative Chris Smith, both from my home state of New Jersey, for the collective roles they have played in both its creation and implementation.

Senator Menendez was instrumental in getting the bill passed into law half a decade ago, and followed through later by lobbying successfully to implement New Jersey’s healthcare reform bill, which enabled thousands of residents of the Garden State to petition their insurance companies for coverage of previously denied therapies. As I’ve written before, although this coverage did not extend to us because my husband’s insurance originates in a different state through his employer (yes, I’m still a little bitter), I was, and remain, thrilled for the families whose often overwhelming bills have been significantly reduced. I actually know a number of those who have directly benefited from its passing.

It’s a beautiful thing to see a mom able to focus on potty training rather than worrying about how to put food on the table.

I’d also like to praise Representative Smith, who himself introduced the CARA bill to the House of Representatives, and whose initial advocacy for autism spans over three entire decades.  Congressman Smith has more than willingly lent an ear to the needs of this particular community, and has relentlessly sought relief for us through written legal means. He first listened to the pleas of two of our area’s fiercest autism advocates, Billy and Bobbie Gallager, over fifteen years ago, which resulted in his personally spearheading many of the bills which continue to aid the residents of a state where autism affects one in sixty boys. He continues to remain a vital force for legislative reform.

And yes, I said one in sixty.

Finally, I’d just like to extend my deep appreciation, to both Senator Menendez, and to Representative Smith. Through your dedication to our cause, and your relentless advocacy, you have brought both aid and relief to many families in my native state.  For your collective time and effort, I am extremely grateful. I’d also like to mention I make a mean jambalaya (it remains my only “mean” dish), and should either of you have a hankering for the taste of the low country, please let me know. I even have Tupperware for left-overs.

In the off-chance that this hankering does not occur, know that I simply, and humbly, thank you both.