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
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.
January 31, 2012
POAC Gala 2012, a Call for Contributions
(Gary Weitzen, Executive Director)
It’s a brisk, wintry Saturday evening. Feathers and fedoras abound for the “gangster ball” theme, drinks are flowing, and the driving beat of good tunes makes it impossible not to claim space on the dance floor. No, this is not a scene from Boardwalk Empire. It’s a sneak peak at the POAC (Parents of Autistic Children) Gala, which is celebrated annually at the Eagle Ridge Golf Club, and will take place this February 25th at 6:00 PM.
I will not being wearing a flapper dress. They are not that becoming when you’re short.
In a few weeks several hundred people will soon gather to support POAC, as they endeavor to raise money to support the multitude of programs they continually offer to those within the autistic community. These programs range from providing educational supports to parents, teachers, and school personnel, as well as offering recreational activities to children with autism and their siblings. POAC receives no state or federal funds, and its existence relies entirely upon private donations.
Most of these programs remain free to anyone who works with or loves a child with autism.
I can speak from personal experience about what POAC has meant to me, and to many families in the area. When we relocated back to New Jersey six years ago, our eldest child had only had his autism diagnosis for about a year. While living in the Washington, DC area I had struggled to find activities to do with my son. I also struggled to find free educational opportunities with which to enhance his in-home ABA program, the methodology many people use to instruct autistic children.
(Simone Tellini, Training Coordinator)
As soon as I found out about POAC I realized we immediately had access to a wonderful support group, a variety of free educational workshops, and recreational opportunities in an atmosphere that was always welcoming to my child. POAC gave me and my son an outlet on weekends, and through one of their fundraisers a few years ago at Rein Dancer Therapeutic Riding Center, they were instrumental in showing me my eldest’s love for all things equine as well.
Most importantly, POAC gave us a second family.
The price of a ticket to attend the gala is $150, but there are other ways to contribute as well. Each year at the Gala a silent auction is held, and POAC is in need of donations for this year’s fundraiser. The Gala committee also holds a gift auction and raffle as well, and POAC would greatly appreciate any contributions of business goods or services. Finally, another way to contribute would be to place an ad in the Journal that is distributed to all guests the night of the event.
Any contribution you or your company make would benefit children with autism and their families tremendously.
If you are interested in participating, donations can be brought to the POAC office, or will be picked up for you. Please contact POAC at:
1999 Route 88
Brick, NJ 08724
(732) 785-1099
Thank you so much!
January 22, 2012
And the Answer is…
“Mom, why does Justin say “eeee”? Zach asks me as he colors a wooden snowflake bright red, a hue he says he chose because it’s “cheerful”. “I don’t know honey, that’s just the way your brother talks because of his autism”, I respond. I help him uncap a green marker to make the snowflake more “Christmasy”, and I think about how much I’d truly like to know the answer to that particular query. It’s been seven years, thousands of hours of speech therapy, and an equal amount of money spent on trying to elicit some consonants out of my eldest son. I’ve been a (mostly) good girl all of these years, and truly, I’m ready for someone to end the mystery for me. I look down at Zach and realize he’s ceased his artistic attempts and is looking right at me, as if I’d merely forgotten the real answer, and my response to him is imminent.
He’s turning five. The questions are starting to come.
It’s funny. So far, we’ve had elaborate discussions on what constitutes a soul, what transpires in heaven (Mommy, Daddy, and Justin are there, friendly dinosaurs are residents, and there are a lot of snacks). He’s asked me why the sky is blue (the answer for which I had to look up on the internet and now no longer recall), but he hasn’t peppered me with many questions about autism. Zach does know that it’s hard for some people with autism to talk and to make friends. He also understands that autism is the reason his big brother plays the same scene in a movie a trillion times on his DVD player, and that Zach needs to see films on our “big screen” if he wants to know the ending of anything. So far, except for loudly declaring that a few kids at POAC events have autism, it hasn’t been a huge topic of discussion.
I’m pretty sure however, that it will be soon.
Zach’s starting to really notice Justin’s behavior, how he’ll frequently seek affection from his parents (which immediately prompts Zach to do the same, no imitation issues here), but remains mostly solitary in his activities, despite our numerous attempts. He’s asked if Justin could play Monopoly with us, and seemed mildly disappointed when his brother made it clear that plastic cars and thimbles hold no interest for him. Our bowling activities have placated him a bit, afforded Zach the opportunity to cheer his brother on and hug him when he’s victorious, allowed him to feel connected to his sibling. On the rare occasion when Jeff and I have been able to get them to run around the house, Zach has thrilled to the chase, and solicited Justin’s help in conspiring against his parents. Recently there have been more opportunities for connection, for fairly “typical” sibling interaction in our house. Zach has loved them all.
But I’ve noticed that now his questions are becoming far more difficult to answer, and his requests are of a nature I can’t reasonably fulfill. Last week, it was why Justin doesn’t have playdates with his friends from school, and why he wouldn’t sing a song with him. Yesterday ended with a half-hour long discussion as to why Justin can’t sleep in his little brother’s room, with my explanation about completely different schedules (and Mommy losing her mind if they woke each other up) clearly constituting an inadequate response. He’s beginning to want more from their relationship, and he’s starting to wonder why he’s not getting it.
I personally am envisioning a great deal more chocolate in my immediate future.
So far it’s been fairly calm seas between the two of them, with the occasional appearance of mild skirmishes over toys the only time sibling rivalry has marred the surface of their relationship. Every day, Zach still asks how long it will be before Justin gets home from school. He continues his unsolicited acts of generosity toward his elder brother, leaving him books and toys at his place at the table (ones he no longer has interest in of course). According to Zach, Justin is still his best friend.
And I just hope, as we transition into the next phase of Zach’s childhood where questions and requests will dominate our days, that this brotherly love will remain.
January 4, 2012
Dear Diary…
Dear Diary…
That’s how each segment of my play starts, a script I wrote this summer when I was able to summon the maturity to ignore my pool and whatever Game of Thrones novel I was reading at the time. It’s the story of three mothers and their experiences with their autistic children, all of whom hail from extremely diverse backgrounds, and all of whom are raising children with autism who reside on various parts of the spectrum. One woman is a young mother struggling with her marriage as well as her son’s diagnosis; one is a rather devout Jew and single parent; and one is a college professor raising adopted autistic twins with her life partner.
I’ll confess, the lesbian is my favorite. She’s quite sassy.
I’ll also divulge to you that this past summer nobody was more surprised than me that I could write fiction. My last foray into this genre was a rather pathetic short story penned so long ago (the 80’s) that it is most assuredly residing in a landfill rather than a recycling bin. The truth is, the idea to write the play at all was in part born out of a desire to create a fundraiser for Parents of Autistic Children (POAC), a local and fabulous autism organization, and in part to promote another endeavor I’ll be speaking about at a later time. Frankly, I was simply thrilled I could do it, and equally honored that POAC agreed to let me produce it for them.
I’ll be announcing dates soon, and there may be multiple venues (as to my non-faux-humble surprise a few “real” theaters actually seem to be interested) but I’ll wait to formally announce until everything’s set in stone. I’m hoping to put on a few shows here in Jersey, and a night or two in DC, the city I consider my second home. Of course, when Tina Fey and Amy Poehler beg me to be a part of such a monumental event, I’ll graciously concede, and I’m certain Broadway will open its arms to me as well.
Tina and Amy might have a small part in that too.
When the “tour” is over, if it turns out that someone other than my husband liked my play, I plan on making my script available to anyone who’d like to use it as a fundraiser as well. There will be some rules (it’s a play about autism, of course there will be rules). Any individual interested will have to show proof of where the money’s going (I don’t want to find out down the road my writing contributed to someone’s granite kitchen countertops). Said individual will have to promise to read my words as written (if you have some differing opinions to express, write your own play). Although this isn’t a deal-breaker, it would also be lovely if whomever appropriates the script mentions I wrote the thing, and informs me as to how much money they banked for their organization.
And if you’re thinking you don’t have time to put on a play to support your favorite autism organization, trust me, this little theatrical contraption couldn’t be easier to produce. There’s no memorization, no dialogue, and no sets. Hell, there’s really no movement required at all. If you have a living room, a few chairs, and three women who can read, you’ll have yourself a free fundraiser.
Coupled with my goal of relaxing more in 2012 is my desire to throw things out to the universe a bit more, and I’m so excited to give “the theater” a try. I’ve already begun to learn about important things like building permits, fire codes, and soundboards. I’ve acquired my fabulous autism-mom/actresses, Dr. Robyn Leitner, and Babette Zschiegner from Peace with Autism. Most importantly, I’ve begun shortlisting songs for us to walk onstage to (most of my husband’s suggestions were inappropriate, I sense a contest on Facebook in the imminent future). So join me in April (dates TBA), and support POAC, a wonderful autism organization.
I promise, you’ll laugh a little, and you’ll cry a little. Thanks in advance for your support!
December 12, 2011
POAC Gala 2012
(Gary Weitzen, director of POAC)
I’m always on the lookout for unique holiday gifts (especially ones I don’t have to wait in line to purchase). So, as I was waiting for Zach to finish dance class last Friday at the Rebecca Martin School of Dance I listened with some interest as the other parents were discussing their takes from Black Friday and Cyber Monday (in my house, these are my husband’s domains, as he is a wizard with a coupon). That lovely woman from the California Walmart came up (you know, the one who found it absolutely necessary to Mace people, because that of course is the Christmas spirit), as did the fabulous bargains some people had acquired. A few of their prizes led to a couple of ideas for two little boys who most certainly are on Santa’s “nice list”.
Bet you can guess who they are.
As I relaxed on the unforgiving bench, grateful for an entire forty-five minutes of sitting down AND adult conversation, one of POAC’s members and volunteers casually mentioned an incredibly creative gift idea that a high school classmate of his had offered to him and their friends. It seems this generous woman had decided to buy enough tickets for the upcoming POAC Gala to fill three tables, simultaneously donating quite a large amount of money to a wonderful autism organization, while providing a great night out for friends.
I’ve decided she’s brilliant.
As I sat and listened to her “back-story” (just a nice person, no autism connections whatsoever), I thought about what a fantastic present this would make for someone, particularly that person who has “everything”. Tickets are around $150 a pop (so clearly this gift would be more than just a stocking stuffer), but it would at once provide the recipient with a great night out, and help an incredible local autism organization continue to provide trainings, workshops, and perhaps most importantly, those recreational events that fill a void for so many autism families. I thought it was such a great idea that I’d write about it here, and attach the post I wrote about the Gala last February.
This year it will be taking place once again at the Eagle Ridge Golf Course in Lakewood, on February 25th at 7:00 PM. To purchase tickets please contact POAC (Parents of Autistic Children). Please forward this idea on to anyone who might be interested, thank you, and happy holidays!
(Me and my guy)
Eagle Ridge Golf Course is a beautiful venue, and thanks to the diligent efforts of the gala planning committee and their staff, the entire affair was lovely. Faux fires spaced strategically around the rooms rid the air of that damp winter chill, the open bar was, unlike my twenty-something remembrances, not thirty people deep, and the appetizers were delicious and plentiful (did I mention the open bar?). Due to the benevolence of one of the primary volunteers for the organization Jeff and I were seated at a primo table, which although its proximity to the DJ would render me temporarily deaf for a few hours that night, did afford me the opportunity to survey the room and its occupants. I’d have to say it was almost a giddy crew, including many parents with offspring on the spectrum, grateful for a break from the usual grind.
In general, when it comes to entertainment, we are a people easily pleased.
After somewhat reluctantly tearing ourselves away from the hors d’oeuvres and cocktail hour (free samosas, yum!), me, my husband and a few friends I’d been fortunate enough to have assigned to our table made our way to our seats, and settled in. There was already food set before me which made me inordinately happy, and once most of the assembled guests had taken their places, the lights subsequently dimmed. Gary Weitzen, the president of POAC, took the floor. He then proceeded to deliver a speech that momentarily made me abandon my salad AND my breadstick.
Trust me, that is no small feat.
As he dove into his recital of POAC’s myriad accomplishments over the last decade, he began with an anecdote many of my readers can relate to, one that made me regret not bringing to the party both my mascara and my lipstick. In a moving tribute to his child, he shared with us the devastating day a specialized pediatrician had told him, and his then three-year-old son, that the latter had major developmental delays. I wrenched my eyes away from Gary for just a few moments during his discourse, glanced around the dimly lit room, and noticed many heads nodding, viewed multiple bodies braced against chairs in anticipation of what surely was to come. Of course the crushing blow arrived in the form of an almost casual chaser, “your son has autism”, which quickly concluded the physician’s visit. Sadly, I am certain our POAC president, even in this day and age, is not alone in his suffering through the brevity, and coldness, of that concise phrase.
Gary shared with us that he drove home alone from Philadelphia with his son, mired in a fog that he couldn’t seem to dissipate with wiper fluid or headlights, until he realized its origins commenced with his own eyes. This was 1997. There were not as yet thousands of agencies, websites, blogs, and chat rooms for parents to commence their descent into the labyrinth of scant local services. There were autism organizations throughout our state, but there was nothing reminiscent of what we today know of as POAC. Free, plentiful trainings for teachers and parents throughout New Jersey, did not as then exist. Law enforcement did not readily have the option to be instructed in the signs of autism, were not frequently educated in the ways in which an individual on the spectrum might react in a stressful situation. Perhaps, most importantly, there were precious few opportunities for parents to congregate with their children in safe environments for recreational purposes, always for free.
Rather than capitulate to that reality, Gary Weitzen transcended that fog, and rose to fill the void.
I could share with you that POAC, in addition to offering the services listed above, is the largest provider of free autism training and education in the entire state. I could inform you that its classes for teachers and aides, focusing on the core deficits of autism, namely communication, behaviors, and socialization issues, have literally transformed entire classrooms. Finally, I could regale you with the joy I feel every time I watch my eldest child mount his ride, tell you that his intense love for the equestrian life would never have been discovered if POAC hadn’t pursued a local horseback-riding farm, and requested that they host an event.
I could tell you the latter, but then I’d just be bragging..
Instead, I’ll share this with you. I am so thrilled this organization exists in its many manifestations, with its bountiful services at my fingertips. I am so intensely grateful for the numerous companies who fund its endeavors, many of whom have only tenuous connections to autism through a valued employee. Watching my friends, and numerous people I’ve come to have a great deal of respect for whoop it up on a dance floor was a joy (and yes, me and my husband were most certainly included in that gyrating posse). In an act of over-the-top abundance I not only won a basket through the elaborately constructed raffle (then had to be educated as to who Ed Hardy is, it’s sad getting old), but I believe I’ve also scored a new playdate opportunity for my youngest, just one town over. I could tell you, with all honesty, that my oft-filled wine glass overfloweth.
But I’ll relate this to you as well. At the end of a beautifully constructed film montage, resplendent with unforgettable images of our children and their triumphs, one phrase, recited by those young voices able to enrich our lives with intelligible sound, rang honest and pure. In a world where often nothing is certain, this truth is indelibly clear.
We are family.
For information on how you can volunteer for POAC, or simply enjoy their events, please visit the website at:
November 28, 2011
My Autism Play (a.k.a. What I Did Over Summer Vacation)
As I’ve mentioned before on this blog, since 2010 things have been going pretty well chez McCafferty (I had hoped the tide would turn with President Obama’s inauguration, but we had to wait another year). Everyone eats now, and for the most part everyone sleeps through the night as well (except for me). In general, that high-level angst we were enveloped in now seems only in evidence when Zach is not getting what he wants EXACTLY how, and when, he wants it. Fortunately, since I am a veteran teacher, this is a situation I usually feel extremely capable of dealing with on a daily basis.
When handling Zach, the fabulous Tina Fey quote from Prayer for a Daughter, “I will not have that Shit. I will not have it”, often comes to mind.
Even with the impending end of the world (again!), and the fact that scarves are the style and I still can’t figure out how to wear them, we seem to have reached a lovely little détente with autism in this house, an acknowledgment that it still lives and breathes amongst us, but perhaps isn’t the main things we talk about anymore. I believe last Tuesday, for thirty-seven consecutive seconds while I was making dinner, I actually forgot my kids had it.
Then Justin asked me to rearrange his book shelf for the five thousandth time that day, and I remembered.
The truth is, I’ve slowly realized over the past two years that I’m truly enjoying myself and having fun again, which was pretty much my main goal in life for thirty-six years before I became a mother. I’ve had to take some baby steps to return there, fought off a few mild panic attacks after having a good time for more than five minutes, until I realized my progeny were actually happy too. For me at least, it took a while to claw my way out of what Susan Senator so aptly named “siege mode”, a not-so-fun way of life within which the McCaffertys dwelled for a good half decade or so.
Trust me, I am much more pleasant to be around now. Just ask my husband.
Back in what I lovingly refer to as “good times” (or that year-and-a-half in Virginia where I crawled around after my autistic toddler six hours a day trying to get him to sign “ball” because our Early Intervention services sucked), I found myself working side-by-side both with my son, and that famous cycle of grief. I can clearly remember one particularly chill fall day, where I’d spent an hour with Justin building a ball “thingy”, soliciting great signs and extreme enthusiasm from him with ease, a double coup. When we completed our masterpiece Justin went to attach the final ramp to the tippy-top, and when he couldn’t make it click he became immediately distraught. Before I could intervene he simply smashed the whole thing to the ground, looked at me with what I swore was unbridled outrage, and threw himself to the ground in a tantrum I’m certain they could hear at the White House.
Through the caterwauling I recall thinking I’d missed Oprah’s Favorite Things for this. I admit, I was bitter.
I remember, as I tried to scoop up all the tiny plastic pieces I would certainly step on later, that I knew a year into the “therapy wars” that this wasn’t enough for me anymore. It had been twelve months since Justin’s diagnosis, and although he’d actually made a lot of progress in a number of areas, it was clear to me he wouldn’t be one of those kids who “recovered”. I also realized over the course of that year I’d made a mental shift, perhaps out of necessity, or to save my sanity. I was no longer striving to completely eliminate Justin’s layers of autism, banish them from sight.
I simply wanted the kid to find his damn happy place. Was that too much to ask?
So, I returned to that famous grief cycle and struck a bargain with the universe (nothing specific mind you, I like to keep my options open), one I will honestly confess was nothing but a win-win for me, which is how I like things. I made a promise to myself that if my child ever smiled more than he cried I’d move beyond therapy and folding laundry, and actually do something for myself, and the autism community as well. These things included (but are not limited to) writing a book/blog, creating some kind of fundraiser that could easily be schlepped around, and finally, a project me and my mom could implement within the public schools. So far, I’ve accomplished step one (at least five people RAVE about my unpublished “back-story”), and the blog is simply a joy. So, in an effort to keep true to my promise this summer I moved on to step two, and in my “free time”, I wrote an autism play.
Which, in case you weren’t aware, is exactly the next logical step for an ex-French major/housewife with one publishing credit to her name to undertake.
It’s a simple little endeavor, one which requires the actresses just to sit and read a script out loud, because at this point in middle age, I’m pretty certain I’ll never memorize anything again. I’m shooting for putting it on in April during Autism Awareness Month, even if it ends up being in my house (and trust me, that’s a serious possibility). I’ve had the great fortune of finding out last week that POAC, Parents of Autistic Children, has agreed to let me “produce” it for them as a fundraiser. If we can get people other than my mommy to show up to this play (she really liked it!), perhaps we can generate a little revenue for a great organization, and a great cause.
I’ll be writing about this periodically, so for now I’ll be keeping more details under wraps (I know, how will you survive the suspense?), but I look forward to taking you on my journey of securing actresses, begging people to use social media/witchcraft to promote this thing, and finding a venue bigger than my living room. Trust me, I’ll need help with a title (I suck at those), and a great song for us to walk on stage to (thinking “Lady Marmalade” from Moulin Rouge is fun, but perhaps a song about prostitutes might be a wee bit inappropriate). In advance, I am grateful for all the suggestions and support I know you will show me.
But most of all, I’m simply grateful for my sons’ smiles, and for enjoying the absolute luxury of trying to fulfill a bargain.
