May 11, 2013

Walk-a-thon for Someone Special Needs You

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 10:33 am by autismmommytherapist

Easter 2013 005

Zach distracts me for a moment, clamoring for me to appreciate his Easter masterpiece. As I turn to give his creation its proper due I see a basket of eggs teeter precariously from its perch near Justin’s elbow, and I lunge to save them.

The fact that they’re not real seems to have escapted my primal instincts for the moment, and I have to laugh at myself.

I secure the errant basket in the middle of the table this time, and my eldest gives me a look as if to say “What’s your problem, Mom?”, a query to which I could give a variety of responses. Instead, I make a concerted effort to lower my heartrate while making sure to keep Justin’s curious hands away from the glue gun that’s apparently become very enticing to him.

It’s just another Friday night at Someone Special Needs You.

SSNY was founded by Vince Scanelli, a parent of an adult child with autism who wanted to provide his son with both a social outlet, and an activity-based evening that didn’t center solely on his family. One Friday night a month (except for January and the summer months) children and adults with a variety of disabilities gather behind the Colts Neck Reformed Church to partake in crafts and events, while simultaneously being assisted by neurotypical teenagers from the Colts Neck school district.

It’s a lovely program, an opportunity for individuals with special needs both to get out and to have a “friend” for an evening, and an equally important opportunity for a number of teen-agers to have a glimpse into the world of difference and disability.

A win-win for all.

I began bringing Justin, then later Zach, to SSNY six years ago, when Justin was only three, and Zach had not yet graced us with his presence. I still remember seeing the flyer in the depths of his backpack and being elated to discover what I felt would be a fun opportunity for my boy, one for whom many traditional childhood activities are decidedly not fun.

I knew he liked crafts, and loved activities like trick-or-treating, bouncy houses, and Easter egg hunts, so I figured this would be a great event for him. With a few rare exceptions (most notably the time my aunt and I had to carry him out to the car after a tantrum of such magnificent proportions I knew he’d set an all-time record), he’s enjoyed every minute there these last six years, as has his mom.

One of the best parts is, it’s also free.

SSNY is always looking for new families to participate, and I’m writing today in part to encourage any of you with special needs children to give it a try, and in part because the organization is holding its very first walk on June 1st  in Spring Lake.

The boardwalk will not be ready so we will be walking around the Spring Lake lake. The walk starts at 9:00 AM and ends at noon. Parking is available in the train station at Warren and Railroad Avenues, and the walk start point is at 5th Avenue and Warren (look for the blue tent).

In addition to offering a once a month alternative to a typical Friday night at home, Vince is also attempting to create a group home in central Jersey at Overbrook Farms in Colts Neck. The home is the inspiration for the walk.Vince will require a significant amount of funding to bring the establishment to life.

If he’s successful the group home will consist of ten beds for as many adults with disabilities, as well as the chance for said adults to participate in a working farm.

In many instances adults with disabilities have been marginalized in the workplace, and this farm would grant the opportunity for ten people to contribute to, and ultimately hopefully work with, members of the Colts Neck community. For many parents of children with special needs (this one included), a place to reside and a meaningful workplace would be dreams come true.

I know we are all besieged by requests to donate these days (I swear, I’m hit up at least a half dozen times a week between autism and the Girl Scouts), and I know money’s tight for us all. So, if you’d just prefer to come out and cheer on SSNY on June 1st, or give the evening activity a try, we’d love to see you.

I’ll leave you the website below, and if you care to join us in any fashion, we’d love your support. Thank you!

 http://www.ssny.org/  (forms for the walk are available here)

Advertisements

April 19, 2013

Autism Awareness Month- A Celebration of Autism Advocates

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

vince scanelli

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

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

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

Vincent Scanelli

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

April 12, 2013

Autism Awareness Month/Celebrating Autism Advocates

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

POAC Gala 009

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

 

Gary Weitzen

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

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

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

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

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

 

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

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

Kim:  What are your dreams for your son?

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

April 4, 2011

The Pot of Gold

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , at 9:31 am by autismmommytherapist

“Zachy, we don’t stand up in booths at restaurants” I gently admonish my youngest child, reminding myself that this is literally the first time he’s been in such an establishment in two years, since he’s an adherent to the gluten-free casein-free diet. While there are now a number of pizza places in our area that serve their fare without wheat, rice, barley, and oats (I imagine this is mostly due to Celiac’s disease and a recent diet craze by celebrities, not autism), I have yet to find a locale which can meet both of my son’s restrictions. Tonight however we’re fortunate, because the owner of this particular Perkins’s has no issue with my toting Zach’s dinner along with me from home, so we’re set. Both boys, to my delight, are eating well. And after I’ve cleaned up the multiple Picasso-like smears of ketchup enhancing both the design of the table and the glass-etched partition separating us from the other patrons in the restaurant, we’ll be on our way to celebrate St. Patty’s Day at Someone Special Needs You tonight.

A woman’s work is never done.

On our way over to meet my aunt for dinner prior to the big event my eldest son kvetched mightily, his disdain for his younger brother’s presence readily apparent, but about halfway to Perkin’s he finally settled down. I even caught him regarding Zach a few times with a look on his face that said “Can you BELIEVE she’s taking us here?”, and after I explained a hundred thousand times to Zach what our itinerary was for the evening, he got on board with the plans as well. After we pay for our meal and over-tip the nicest waitress EVER (short of shoving a mop and bucket in my “goody bag”, there’s no way I can ever restore this table to its proper cleanliness, and this woman NEVER complains), the boys run eagerly to the car, almost pulling our arms from our sockets in their enthusiasm. We quickly arrive at the church mere minutes later, and I relegate Zach to my aunt as I try to prevent Justin from bowling over some of the younger participants in the program.

Even though he’ll want to leave in twenty minutes, for Justin this moment is horseback riding AND Great Adventure all rolled into one.

Neither of Justin’s buddies are in attendance tonight, but we are fortunate to acquire a substitute, a poised, chatty freshman who I am certain will one day dominate the world (in a good way). Justin takes to her immediately, and she says due to her schedule she can’t commit to coming here every month, but she’ll try harder. I’m just grateful she’s here tonight, as the allure of SSNY for Justin is not the crafts, but the teen-aged girls. While autism may traditionally inhibit social interaction in its hosts, this is clearly one subset of the population for which Justin will consistently overcome his limitations.

His father is so proud.

My youngest son has also lucked into a buddy for the evening, and there is a point where for five consecutive minutes I get to chat with my aunt as my boys decorate their leprechauns, and construct their own personal pots of gold in which to house them. I’m constantly plying Justin with food so he will make it to the grand finale of the night, a hunt in the graveyard for gold nuggets of treasure to fill the green buckets they’re creating to hold their stash. Once again I’m impressed with how much effort Vince Scanelli and his volunteers have taken to throw this event together on a weeknight no less, and I’m still grateful for the flyer about SSNY that Justin’s pre-school teacher sent our way in his backpack four years ago. Generally at this point on a weeknight I’m just trying to remind myself to make Justin’s lunch for school, and this gentleman has been providing an outlet for children with all disabilities to spend time with neurotypical peers on a monthly basis. From the look of delight and concentration on Zach’s face, I think the McCaffertys have one more activity our boys can do together as a family.

Bonus.

Justin finishes his craft quickly, but manages to fill the remaining time until the treasure hunt with multiple trips to the bathroom, so for once I’m not spending the majority of my evening convincing him to stick around. Halfway into the hour Vince summons us all to the front of the church’s great room, distributes leprechaun hats to those who desire to don them (where does this man find the time), and regales us with the plans for the rest of the evening. It seems those naughty little Irish icons have distributed their wealth throughout the adjoining cemetery out back, and if we move quickly we can acquire them for ourselves before the green gremlins return to claim their cache. I look around me at the participants, ranging widely both in age and in the manifestation of their disabilities, and listen to their collective exhale of joy and anticipation. I watch Zach look up at my aunt in wonder as he rejects his hat, then I turn toward my eldest to see how he has reacted to the news of impending carb heaven.

He stands squarely in the center of the fray, his eyes mere inches from the mecca of  DVD movie heaven, smiling and entranced by the old man from Up. My son is completely unaware of his surroundings, could just as easily be in Disney, or at the DMV. For him, at this moment, none of the rest of us even exists.

Even a few years ago, this realization might have ruined the night for me. I would have been so saddened my son was oblivious to the excitement swirling around him I wouldn’t have been able to enjoy the moments of engagement he did have this evening, the connection forged with a girl I hope will be a new friend. I’m not certain I would have been able to move forward in my mind to the event to come, which will involve my two boys breathlessly foraging for their finds, relentless in their acquisition of gold. I don’t know that I could have pulled myself back from the abyss of what appears to me at times such a solitary state for my boy, one in which I’ve often envisioned he must feel so alone.

Except, perhaps sometimes, like right now, he actually doesn’t.

My goals for my boys have never altered over the years, have not been diminished by autism, have simply been reframed. I want what I’ve always wanted for them- health, hope for a safe and industrious future, and happiness. The longer I remain on the “autism tour”, the more I feel these elaborate goals are potentially feasible, will perhaps be attainable while I am still young and facile enough in mind to recognize we’ve achieved them.

And that day, in all its glory, will truly be the pot of gold at the end of the rainbow.