April 19, 2013
Autism Awareness Month- A Celebration of Autism Advocates
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
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
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
March 5, 2013
POAC Autism Services Walk-a-thon
I know. Repeats suck.
Today I hope you’ll bear with me however, because I’m going to recycle something I wrote two years ago, a post that is dear to my heart. It’s about POAC Autism Services, and one of their many annual walk-a-thons in which my family participates every year.
This year it will be held on Sunday, April 28th at 12:00 in Blue Claws Stadium in Lakewood, and as usual, I anticipate they will have a stunning turnout. Even if you don’t contribute financially, please consider walking with us that day. If you have a relative, friend, or neighbor who has a child with autism, just your presence and support will make a difference in their lives. Thank you!
“Elmo should go back to Sesame Street, Mommy” says my youngest child as he hunches down in his stroller, in part to avoid the wind whipping mercilessly around the stadium on this early April morning, and in part because Elmo is clearly lost, and therefore should leave immediately. Buster, the Lakewood BlueClaws mascot is here as well, but today Zach is not impressed, wants solely to traverse the gusts making it difficult for me and my mother to even gain entrance into the park.
It’s World Autism Awareness Day, and not coincidentally the first of several walk-a-thons to be held around the state of New Jersey for POAC Autism Services , and it feels more like early March than spring. I am confident a breeze will not prevent anyone from participating in today’s event however, am excited that thousands of people from around the state will be donating and walking for a cause that perhaps has completely infiltrated their lives, and their hearts.
I know it has done so with mine.
As we wheel Zachary through the gates I allow myself a moment of self-congratulation, because we’re here without Justin, and for the first time, perhaps ever, I don’t feel the slightest bit guilty. He would have been upset long before we reached our destination, confused by a trajectory of roads that lead him to an open building with nothing inside that would interest him, although there will be plenty here to captivate Zach.
So, I’ve left my oldest with his father to attend this month’s autism movie. Jeff later reported almost nobody was there for this showing, so I’m hopeful they all attended the walk. Although Zach has autism as well, the progress he has made has been so stunning I am confident he will one day be able to harness the anxieties and impulsivity that herald his brand of the disorder, in a way in which his older sibling will never be able to do. While I walk for all children on the spectrum, my primary motivation will always be for Justin. I’m sad he won’t be participating with us today, but I know he’s in a happier place.
Hopefully, Jeff is too.
As my little family of three wends its way through the crowds I spend a few moments taking it all in, the people ensconced in boldly colored t-shirts proclaiming their love for someone on the spectrum, the vendors and sponsors with their brochures and enticing crafts for little hands. I can only imagine how much planning it took to create this day, what combined effort and expertise went into an event of such magnitude.
Every face I walk by seems cheerful, from those hawking autism “accessories”, to those preventing an unhappy child from a meltdown in the stands. There is a palpable aura of peace here, of parents stripping away the confines of an often harrowing existence, and simply reveling in a day, worldwide, about us.
And with all due respect, I kindly assert we deserve it.
In what seems no time at all Zach conquers three moon bounces, a playground, and a multitude of crafts, and it’s time for the exercise portion of the day to commence. Gary Weitzen, executive director of POAC, descends to the bottom of the stadium to address the crowds, and it seems as if even those children and adults who are vocally stimming quiet a little, are loathe to miss a word.
He speaks of his gratitude to everyone who contributed both physically and financially today, to those who continue to underwrite an organization which is the largest provider of free autism trainings in the entire state. Reference was made to an impressive figure raised that almost hit the six figure mark, and may yet do so before the month is through.
Gary cheerfully reminds the crowds of all POAC Autism Services does for families who might otherwise have limited recourse to recreational activities, always for no cost. And after a stunning rendition of Christina Aguillera’s “Beautiful”, we are free to walk, to continue to take steps in the right direction to heal our children, our community, and our hearts.
I pause for a moment before we begin the sole loop my family will participate in today (a four-year-old has his limits with philanthropy), and as the sun slips over an awning that previously provided shade I am required to squint to take it all in, to view the masses moving in quiet solidarity around the circumference of the field.
There are spaces of course, but as I remain still, I notice that slowly, steadily, they are being filled, as some teams lag behind, and others proceed at a quicker pace. I know if I stood here long enough I’d behold one great, cohesive circle of commitment, seamless in its synchronicity of volunteers, parents, children, teachers and therapists, all striving mightily to fill the gaps.
And filling the gaps is exactly what POAC Autism Services has done so beautifully for well over a decade now, and I’m certain will continue to do so for many more to come.
Zach looks up at me impatiently, imploring me to return to the relative warmth of my car and take him home for lunch, and I concede to his desires. I take one last look back from the threshold of the stadium, and am rewarded by a thinning of space, of the blankness between what has been offered to our children, and what should be provided to them.
I am so grateful this organization has stepped up to help erase those voids, so appreciative of all those who made it possible to be here today. Once again, we find ourselves a part of a community who cares. And I am reminded anew of what Gary so eloquently communicated to us all at the POAC Gala, mere weeks ago, in his welcoming speech.
We are family, indeed.
Check out POAC Autism Services on their website at: http://www.poac.net
December 21, 2012
Moms’ Night Out
I love my family (as I’m sure all of you reading this love yours as well), but I have to admit I spend a decent amount of time plotting ways in which to indulge in a few hours of respite from all things “mothering”. Said respite was on my mind a few weeks ago as I spent seven glorious hours driving solo in my annual round-trip visit to my DC crew, a period of “quiet time” I will share with you that I enjoyed immensely.
Since I also enjoy the company of others, a nice chat, and (of course!) good food, while clocking the miles to Washington I racked my brain for a cheap, easy way to accomplish those goals on a more frequent basis than once a year. Then it came to me. I would create an entire evening solely around the magnificence that is Bonefish Grill’s Bang Bang shrimp.
If you order it, they will come.
I admit that while part of my desire to have a regular Moms’ Night Out gig comes from my perpetual desire to eat, a good portion of my intent came from an evening out in the DC suburbs with my teacher friends, all of whom are (and eternally remain) fabulous women and helpful advisors to me. As I sat that evening and listened to one former co-worker (and my “little sister” in the truest sense of the word) discussing how she’d creatively figured out how to help a child just that morning, it struck me how much I missed these conversations, talks which had been a huge part of my former professional life.
We didn’t have a water cooler back then, but we did have our classrooms, and within those walls many insightful educational decisions were made in regards to our students, and the programs we wanted to implement for them. I didn’t always agree with everything my team said, but I can tell you with absolute certainty that they always made me think.
Hence, the impending Bonefish Grill thinktank.
The truth is, I’m not sure how my family would have made it at times if it weren’t for the second sisterhood I’ve immersed myself in up here, namely my circle of friends who have and who work with our differently-abled kids. The connections, advice, and quite honestly, laughs I’ve had with these women have been an invaluable resource to me since we “sort of “moved back home seven years ago. Although I get to see these women at POAC events and PTA meetings, I think it would be great for us to get-together in a more informal place (again, a place which serves bang-bang shrimp, and lest I forget, wine).
So, my proposal is as follows. The first Wednesday of every month, starting on 1/2/13, 6:30 at Bonefish Grill in Brick, will be a gathering of the very tired minds and bodies of moms with kids with special needs, and those who work with them. In the spirit of inclusion I’m of course extending the invitation to those with neurotypical kids as well, but I want this to be a forum where women can exchange ideas, business cards, and have a good laugh while feeling entirely comfortable discussing their kids (or not). It’s pay as you go, and I should warn you I will not be sending out email blasts as reminders (hell I’ll probably forget to post it on Facebook) as my post-Sandy brain still has not completely recovered. The best part is, you don’t have to do anything but attend. No RSVP required, just show up.
That’s one of my favorite parts.
I have a core group of women interested in “hosting” it with me, and between us I can pretty much guarantee at least one person will be in attendance each month, so if you’re going solo, you’ll find a new friend. I figure we’ll hang in the bar area, so just look for a bunch of extremely ecstatic childless women eating well.
I’m short and blond and will have a big bowl of crustaceans in front of me, so don’t be shy.
I know we’re all ridiculously busy, but if you can sneak out of your homes once in a while for a little fun I hope to see you, and if not, I truly wish you and yours the happiest of new years!
November 18, 2012
Storm Stories
It’s day fourteen post-Sandy, and my house is calm, warm and finally clean. As I come back from my run I pick up the morning’s debris pre-school bus, mostly books scattered around the front door as Zach likes a good story before he begins his day. I finish cleaning up, and I realize there will be almost no noise or demands made on me for the next four consecutive hours, and I break into a huge grin.
School, glorious school.
At chez McCafferty we got power back in the middle of last week, and the luxuries of consistent phone, cable and internet use this weekend. We were one of the lucky families, merely inconvenienced, no tragedy accompanying our storm. As of this Saturday things really started to get back to normal here, which makes me both happy for my own brood who truly crave routine, and simultaneously anxious. There are still hundreds of families in my own town without homes. As time passes and all of our routines are reestablished, I just want to make sure we don’t forget those still in need.
Zach’s kindergarten teacher kindly called us over the weekend, attempting to locate all of her charges and make sure they were okay. She shared with me that it is very likely that some of the students in my son’s school, perhaps in his class, have been displaced. She also told me that in an act of typical largesse Brick is accepting students from surrounding towns as well. It is sobering to imagine a five-year-old boy like Zach losing so much and having to start over in a new school as well. I can only imagine the added degree of difficulty if the child has special needs.
I can imagine it, but it’s not a pretty picture.
I’m hoping when the dust clears a little we can get a handle on who is still in need, and what exactly they require at this point. It may be the simple staples of food, clothing, and batteries. Perhaps families will be at a point where gift cards would serve them best.
We won’t know unless we ask. And we have to keep asking, even as more fortunate families like my own move on with their lives.
I like the idea of matching individual families with donations, and as I hear of situations such as this I will be posting them here. Please feel free to comment, particularly if you or your company is offering specific items to people. The important thing now is to make connections, and continue to let those whose lives were literally uprooted by Hurricane Sandy know that we still care.
And from what I’ve seen of the generosity of not only this town, the Jersey shore, and the entire state, I know we can truly help.
Places to make donations to families in need are as follows:
1) Primary Learning Center
224-260 Chambers Bridge Road
Brick NJ 08723
Need: gift cards to Target, Walmart, Loews, etc.
Contact info: (732) 262-2590
Cindy Dornacker ext. 1527
Magda Diaz ext. 1528
The PLC cannot provide receipts
2) POAC (Parents of Autistic Children)
1999 Route 88
Brick, NJ 08724
(732) 785-1099
Need: Gift cards to Target, Walmart, Loews, etc.
Drop-off: between 10-2 weekdays
Mail: attention Gary Weitzen/Simone Tellini
POAC will provide a receipt upon request
3) Backpacks for Brick
If Brick students at any of our schools need supplies, they should let their teacher or guidance counselor know. Supplies will be replenished this week.
September 23, 2012
Hole in One
“No Justin, we’re not going home yet” I say to my eldest son, who has already let our family know he is finished with the rides at Blackbeard’s Cave (an event sponsored by POAC, Parents of Autistic Children). He’s spotted our car, and in no uncertain terms is letting me know he would like to leave. Justin rejects my response with a whine and throws his full weight into pulling my body toward our SUV and egress, which coincides perfectly with my other child’s enthusiastic request to play mini-golf. I meet Jeff’s eyes and we exchange that look we’ve perfected over nine years in the autism trenches, the connection that asks which one of us will be bright enough to figure out how to pull this off.
Our options, all of which have pros and cons, range from disappointing Zach and heading home, or trying to keep Justin placated in the car on a day when we didn’t bring any reinforcers, because the rides were supposed to provide that honor. There is, of course, one final choice. It will require two adults to coerce our eldest son back to the putting green, a decision I am certain will be met with great disdain.
We’ve never played mini-golf with Justin before, as each of our prior attempts resulted in major tantrums (mostly on his part). Ninety-nine percent of the time when we place a demand on Justin we follow through no matter how unpleasant the aftermath, but when it comes to leisure activities, we’ve learned to periodically throw in the towel. Justin has fairly severe autism. There will always be things in life that his family members find enticing, events that would bore him to tears (and on occasion, have done exactly that). Sometimes, the right thing to do is just to jump ship and go home.
But the truth is today I’m feeling feisty, and I’m not yet ready to leave. I want to elongate this family outing that so far has included all four of us for an entire hour, the mast majority of which has been peaceful and pleasant. I quickly turn Justin around and grab his other hand to lead him back to the tiki hut where clubs, golf balls and score cards reside. My husband returns my look with an expression intimating he’s not quite as gung-ho with my decision, but gamely grabs his other hand. Justin emits an “EEE!” of outrage commensurate with our telling him he’s about to sit through a five-hour opera with no intermission, but he permits us to propel him back to the opposite side of the parking lot, where a new adventure (hopefully) awaits him.
Zach is overjoyed that we’re giving this a go, and that his big brother will (in theory) participate. For the look on his face alone, I know I have to figure out how to make this work.
As we traipse back to our new frontier, I briefly contemplate the irony of the situation. After a number of skirmishes in his early childhood Justin became greatly enamored of outings, to the point where I’d have i reining him in and exiting a locale with my skin intact. For years, he was game to try anything. He would often grab my hand and gather up his sneakers with the other, making a beeline for the front door and what I believe he perceived as greener pastures. His desire for excursions never dampened, even during blizzards or torrential downpours. Justin simply wanted “out”, and his mother, whose favorite part of teaching was always field trips, was perfectly happy to comply.
Over the past few years however I’ve watched this desire wane. We’ve tried employing multiple types of reinforcers, “rewards” to encourage our son to stay out, and engaged the services of a phenomenal behaviorist who enabled us to briefly extend our stays on certain occasions. Many of those strategies worked for a while. Over time however their efficacy has waned, and since I only have about thirty pounds on my kid, arguing with him is a moot point. My son’s idea of perfect bliss has morphed into staying home with a good movie in his DVD player, and an even better snack.
As a food enthusiast myself, I so get that urge.
But today I’m determined we’ll stay, and as we cross the threshold of the shack containing our equipment I feel Justin’s body relax, and in response I loosen my grip on the hand I have tightly clenched within my own. He is curious now, watches raptly as we all choose our clubs, is eager to select his favorite. Jeff and I decide (wisely) to forego the scorecard, and we head on out to hunt down our first green, a task which Justin, who rushes ahead of us, does for us.
And to our immense pleasure (and surprise), he does exactly that for eighteen consecutive holes.
There are a few blips here and there. At times Jeff doesn’t quite sink the ball fast enough for Justin, and he lets his father know in no uncertain terms. My eldest is not fond of waiting while Zachary “plays through”, and since there are no other patrons on the green, each boy is able to have his own playing field, which conquers that problem. Justin is ecstatic every time he sinks a put with our assistance. Every single time, Zach cheers him on from afar.
My child, who for almost an entire decade has only shown enthusiasm for movies or toys that light up and spin, loves mini-golf. Who knew.
All too quickly our adventure concludes, and this time it is clear Justin will brook no opposition to the vehicle which will whisk him back to the films and toys he so covets. I smile with satisfaction because our family has found another avenue in which to be together, a way to mitigate the divide between the boys that only seems to grow deeper as they age. I remind myself that no matter how seemingly insurmountable the task at hand, we have to continue to try new things with Justin. We need to push and prod him at times to break through the rigidity of his type of autism, in the hopes he’ll discover a new activity that will bring him joy. Today, to my great delight, our extended stay worked.
And as always, his joy is mine too.
July 16, 2012
Surf’s Up
We reached the height of the ramp leading to the beach, and my smallest son exclaimed at the vista laid out before him of sand, surf, and lifeguards waiting to take him for the ride of his life. He rushed down toward their stand, proclaiming to all who would listen that “he’s going to surf!”. Zach finally stopped in front of their perch, stretched his arms out wide, and informed them that “he’s here”, and ready to go. He was in for the time of his life.
So was every kid with autism who participated in Brick Township’s fifth annual Autism Surfing Day last week.
Dan Santaniello, deputy director of the Department of Parks and Recreation who created the event, saw something similar transpire in Monmouth County, and wanted to offer a commensurate afternoon to children with autism in his home town. Since all the lifeguards involved donated their time, the program does not cut into Brick Township’s budget, an important consideration these days when taking recreation activities into account.
Gary Weitzen, executive director of POAC (Parents of Autistic Children) also located in Brick, has been promoting the event ever since to parents within the community. I found out about it four years ago while on their website and brought Justin, my then five-year-old son with moderate autism, to give surfing a whirl. The activity was not met with a great deal of enthusiasm (understatement of the year), and although we tried on subsequent years, Justin never took to it. Fortunately, he has his love of all things equestrian. We’ll leave the waves to his little brother.
And truly, the ocean was his to conquer. He thrust on his life jacket with an air of total confidence, took the hand of one of his new friends, and headed down to the tide’s ebb and flow with ease. He only attempted to master the waves once, but for the first time he managed to stand for a few seconds, moments which to his mom seemed like a glorious eternity. Zach willingly complied with directions to lay back down and ride this one in, and to his delight and mine, he did.
He even took the guys up on their subsequent offer to ride their wave runner. This kid is fearless.
All too soon it was time to head home for dinner, but I know my son left with a sense of pride and accomplishment (and a stunning medal to boot). After attempting to make friends with everyone on the beach we gathered up our gear, and headed back to the car. Through the grace of Brick Parks and Recreation and POAC Autism Services he’s pushed himself to accomplish something new, and has mastered a new skill, one I hope will continue to bring him joy and pride in the years to come.
For information on activities for children with autism, check out POAC’s website at: www.poac.net
April 30, 2012
Stage Left
We wrapped up our first run of “Raising Autism” this weekend, and I truly have mixed emotions of both exhilaration and relief as I sit here typing this morning. It was an amazing experience, a good portion of which occurred in tandem with a brutally difficult period with our eldest child. My feelings about both are permanently intertwined with one another, with the outcome being extreme appreciation that Justin has mostly returned to his old self, and gratitude that both shows, in my opinion, went extremely well.
Just in case you’re wondering, there will be no self-inflated post-play ego occurring here. Mere hours before our last performance, both of my progeny were enmeshed in such extravagant tantrums I wasn’t certain their parents would make it out alive. This Sunday morning, after the concluding show and a much-needed celebratory glass of wine, I was awoken by an energetic and enthusiastic child at 6:03 AM (yes, I noted the time), and literally dragged out of bed by his tenacious desire to eat toast. Autism, and children in general, have a way of keeping one humble.
So much for the glamorous life of an actress.
I promise this will be my last post about the play (at least for a while). I can’t thank everyone who came out to support POAC Autism Services enough. I also appreciate the support shown for the three women who shared so many of our community’s stories on stage. I’ve already listed all the “players” in my last Gratitude Attitude. I would be remiss however if I didn’t say one final huge thank-you to Bobbie Gallagher and Babette Zschiegner, my actresses extraordinaire, both of whom brought such humor and heartfelt emotion to my script that it was simply a joy to listen to them on stage.
A special thanks to Mary and Scott Craig, my understudy and “sound man” respectively, as well as to Herb Herbst, Brendan Kelly, Colleen Earp and Abi Gardner, all of whom were instrumental in pulling off this gig in a real theater. Thanks as well to POAC Autism Services for helping to underwrite this endeavor, to all of my volunteers, and to everyone who kept me calm throughout the process of literally taking this show on the road.
Trust me, that was no small endeavor.
I’ve mentioned this before, but I hope this isn’t the “end of the road” so to speak for “Raising Autism”. I am hopeful a few specific autism organizations will take my freely offered script and bring this piece to life again, and am keeping fingers crossed that several theaters in the area will take the play on as a philanthropic production. Both dreams are a longshot, but frankly so was writing a play in the first place, so I figure I’ll go for it.
I also plan on eventually offering “Raising Autism” to any legitimate autism agency anywhere that wants to use it as a fundraiser, and hopefully, some will. As I’ve mentioned before, it’s a very basic production. If you’ve got three chairs and three literate women, you’ve basically got the play down cold. Trust me, I knew enough to create a vehicle where I had the luxury of sitting the entire time, one which required no memorization, dialogue, or movement other than breathing.
I’m middle-aged. I know my strengths.
I’ll see what the universe has in store for me down the road. But if nothing else, we raised a nice little chunk of money for POAC Autism Services, a wonderful autism organization that has truly changed the lives of so many families residing in the Garden State. As a bonus note, I also got out of the house AND had the privilege of acting for four hours, an entirely new experience for this current housewife.
In the last venue we even had our own dressing rooms. Maybe there’s a bit of glamour here after all.
But perhaps most importantly, I had the great fortune to be told directly that my writing touched the audience. I had a lovely “review” from a family experiencing a similar difficult period with their own autistic child, one who shared with me that after hearing my words, for the first time in a long time, they didn’t feel so alone.
And truly, that was the point of doing all this in the first place.
Thanks again to everyone who played a part in bringing “Raising Autism” to two wonderful audiences!
April 23, 2012
The Show Must Go On- “Raising Autism”
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.
