April 19, 2013
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 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 1, 2013
A few months ago a study from the University of Connecticut came out stating that some children who are accurately diagnosed with autism in their early years can grow out of it. The study, spearheaded by Deborah Fein and published in the Journal of Child Psychology and Psychiatry, looked at thirty-four adults between the ages of eight and twenty-one. All were diagnosed with autism spectrum disorder before the age of five, and all no longer showed any remaining signs of the disorder. In fact, the study showed no difference in their performance on standard tests when compared with a control group who had never been diagnosed with autism.
Just to keep this in perspective, current statistics show that only one in twenty children given the autistic label in early childhood will outgrow the symptoms.
When I read studies like this I am immediately brought back to my early days with Justin, who was diagnosed in 2004 at seventeen months, before Jenny McCarthy and autism were household words. Back then having a child diagnosed before the age of two was a rarity, and I recall that I held onto this fact tenaciously in those first few months. I enveloped myself in the comfort that at eighteen months of age Justin was in a thirty to thirty-five hour a week ABA program (mostly conducted by his mother), in some cases a year or more before most children were enrolled. His instruction was my solace in a time of chaos.
Quite frankly, I’ll admit that in that first year of therapy I was desperate. At that point I’d had exactly one interaction with a severely autistic person, the sibling of one of my former students. She was a pre-teen by the time I met her, very challenging behaviorally, and often quite unhappy. I remembered how extremely tired her parents looked, and how her younger sister, my charge, seemed wise beyond her years.
That experience stuck with me over the years, permeated my thoughts about what the future held for my firstborn. What terrified me for Justin was not that he had a label, or was different than most of us. Some of my favorite students were quite “different” from the mainstream, some with Downs Syndrome, some with severe ADHD, some just marching to the beat of a different drummer. Most of the time they were happy; in fact, I often felt they were happier with themselves than most of us truly are.
What horrified me about Justin’s diagnosis and the apparent severity of the disorder’s presentation in him was that most of the time he was unhappy too. Not cranky. Not irritable. No, my boy was predominantly, seemingly irrevocably miserable (and with his constant lack of sleep, reflux, and diarrhea, who wouldn’t be). In those first tenuous months of instruction all I thought about was “curing” him, rendering him indistinguishable from his peers. Sure, I wanted to hear his elusive laughter more frequently too, but mostly I wanted to strip his autism from his soul, render him more “typical”.
I wanted him to be like me.
My feelings have changed dramatically since those dark days almost nine years ago, but I stand by how I felt then, feel a tenderness toward that first-time, terrified, mother. My baby was undeniably suffering. I would have done anything to make it stop.
And now, thank God, I can truly say he isn’t suffering any more.
Justin’s life trajectory will not follow a traditional path, or at least the road my family has generally traveled, one which includes higher education, a life partner, friends. I’ve accepted this, and also accepted that part of me will always mourn that he won’t have the trappings of an existence that have so enhanced mine. What’s come in the wake of this acceptance is the dawning realization that my son adores his life, his routines, the few sacred persons whom he loves, and by whom he is loved in return. He is, most of the time, perfectly happy.
At this point, it’s just me who sometimes struggles.
He will not “recover”. There will be no magic pill for him, no concoction which makes him speak, no sloughing off of the characteristics that comprise his particular type of autism. I will forever chase off my fears of his future life without his parents, what will unfold for him when we are no longer here to protect him, respect him, love him for who he is. I’ve accepted this part of his path too, that I will worry until my last sentient thought dissolves into nothingness, and I am no longer of this world.
Yet he will still be here. And so I continue to work toward a world for him which includes a job that enables him to contribute to society, and a cadre of people who recognize his inherent worth. I continue to reach toward a world which extends past accepting his differences to celebrating them. I continue to hope that his world, whether I’m here or not, will remain filled with love.
Somewhere out there a child will be diagnosed today. A mother or father will be bombarded with information, avenues of therapy, promises of cures. It will all appear overwhelming, impossible, fraught with misery. There will seem to be only one solution to eradicate the sadness, one path to offer a child a fulfilling and meaningful life. There is more than one. There are many.
And to anyone embarking on this journey today, I hope my son’s story will help you to a place of peace.
March 23, 2013
As I approach fifty (more rapidly every day it seems), my mind has naturally begun to ponder what I’d like to see accomplished in the world of autism during the last half(?) of my existence as I shoot for that three-digit lifespan. I have personal goals of course (learn how to use my phone, drop those last baby pounds from 2007), but quite honestly I have my own “autism wish list” as well.
Some of these stem from personal experience, some are garnered from the news, and some, to me, just seem to make perfect sense. In honor of autism awareness month, which is coming in April, I’d like to share a few points from my autism bucket list with you, and invite you to respond with yours as well. As Ms. Clinton said it takes a village (or in our community’s case, a galaxy), and I’d love to know what changes you’d like to see in the autism landscape to come.
1) First, since Virginia didn’t recognize Justin’s autism diagnosis back in the day (which forced me to be his primary therapist thirty hours a week for almost a year-and-a-half), I’d love to see legislation in Virginia which requires that adequate Early Intervention therapies be offered to children under three who are diagnosed with autism.
2) Help introduce legislation requiring every state to require teachers to take an autism certification program prior to teaching children with autism so they are familiar with this population. Duh.
3) Have a viable, appropriate employment opportunity for every differently-abled adult out there who wants one. Amen.
4) Have a viable, appropriate residential opportunity for every differently-abled adult out there who wants one. Double amen.
5) Have Tina Fey and Amy Poehler star in my autism play (okay, this is the fantasy wish, but a girl can dream).
6) See the Autism Speaks Autism Treatment Network sites become the go-to place for autism diagnosis and treatment in our country and Canada.
7) Get my books published and donate fabulous amount of money to Autism Speaks and Parents of Autistic Children (again, a girl can dream BIG).
8) Have Fairfax County Virginia schools adopt my anti-bullying program (and have the opportunity to travel down there to help implement it!).
9) See my beautiful eldest boy reside in a place he loves, and have access to riding those horses he adores.
10) Watch as Zachary is sworn in as President (or becomes a fireman, his newest passion, either way we’re good).
Thanks in advance for your contributions!
April 1, 2012
“Mommy, can you have a little autism?” my youngest son asks, all while sitting at our kitchen table twirling a giant plastic T-Rex around by its tail, a toy I am certain will soon end up landing on my face. I think quickly about how I want to respond to this, and I say “Sure honey, some people with autism can talk just like you do”, because the issue Zach keeps coming back to over and over is ‘will Justin ever talk’. Apparently this satisfies my boy, because he forgets I’ve just asked him not to fling that huge, disturbingly life-like creature in my general direction. This time, however, the outcome for his “pet” is not so wonderful.
Clearly, just like in the Jurassic Period, tyrannosaurus rex still can’t fly.
After I’ve rescued his friend from the floor (and applied no less than two Elmo band-aids to his “wounds”), Zach gets down from his seat, and decides to build a fort for his dinosaur family in the living room. I begin washing up the detritus of ham and gluten-free/dairy-free oreos, and as so often happens, my mind begins to wander (so far, it’s always returned). As soapy suds wash away the evidence of a meal consumed, I think about how far Zach has come in his own understanding of autism.
Initially, our inquiries as to what he thought about it were met with complete silence. Now, he talks about it all the time, from discussing Justin’s actions with replaying the same scene over and over on his DVD (“that’s the autism, mom”), to the fact that he said “thank you” to Zachary the other day on his iPad (“Justin DOES talk!”). My boy is truly aware of autism in his smaller world, and within the larger confines of the world around us.
And as I look around, at least within the community in which we live, everybody else seems to be aware as well.
I have to say however that most of what I see around us transcends awareness, has in fact moved past even simple “tolerance”, has even begun to dabble in the waters of true acceptance. I see evidence of this evolution at the movie theater, where a mom with six young girls in tow graciously let me jump ahead of her in the popcorn line, because she could see how anxious Justin was for his carb fix. I witness this acceptance in the children of my neighbors, all of whom always emit a warm greeting for my eldest son, and some of whom continue to ask if he’d like to shoot a basket with them (Justin will eternally decline).
I’ve had a broad view of our little corner of the world’s take on autism as I’ve handed out fliers for my play, with every single store-owner registering only kindness as I’ve described my family, and explained my desire to support POAC Autism Services with my writing. Most importantly, I’ve registered this acceptance of Justin’s differences by his neurotypical peers, during our trips to stores, bowling alleys (he’s quite good now), and of course, his perennial favorite, our local boardwalk. I will admit, sometimes his loud vocalizations and somewhat staggered gait are met with averted eyes. More often than not however, he receives a genuine smile, one which usually is shared with me as well. Sometimes, I even get a heartfelt teen-age comment of “he’s so cute!”.
Which of course, he is.
I feel the world has evolved so much since the dark days of Justin’s diagnosis almost eight years ago, yet of course, we have new roads to forge, more prejudices to destroy. What I continue to see however, the critical point that stirs up so much hope for me, is the constant commitment by those in the autism community to put aside our differences, and instead do our part in raising awareness about our incredible kids. From requests on Facebook to look past our conflicts, to illuminating our homes in blue for the fifth World Autism Awareness Day on April 2nd, to fighting and demanding legislation be put through for the next generation, I see everyone doing their part. And I watch gratefully as our community conducts these actions in far more harmony than I’ve ever witnessed before.
Finally, most importantly perhaps, I see so many people not directly touched by autism trying to lift our lives just a little bit, and do their part by displaying compassion, not condescension.
April is Autism Awareness Month. My husband and I will be turning our porchlight blue, in honor of the commemorated day, the month, and of course, our beautiful and unique children. Acquiring a light bulb sporting a filament that will bathe our home in blue is an easy act, a quick trip to Walmart or Target, a simple twist of a wrist to install. If you’d like to show your support, it’s a wonderful way to let our community know that you care.
And of course, where my kids are concerned, I’ll always gladly accept those smiles too.
As always, thank you for your support!
November 28, 2011
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.
April 14, 2011
I recently subscribed to the official Autism Speaks Blog, which along with the Schafer Autism Report is where I usually turn to for any recent developments in the world of autism. I’m happy to say that the tide seems to be turning in the past year, with more and more positive articles being showcased by both publications, but I read one last week in the AS blog that stopped me cold. According to the article, a mother in Massachusetts apparently withheld cancer treatments from her severely autistic son, and he died. Now a jury of her peers has to ascertain her motivation for the purposes of sentencing severity, has to discern what was truly in her heart as she enacted this deprivation.
I agree with Margery Eagan, who wrote about the trial in her column in the BostonHerald.com. I’d hate to be in their place too.
Clearly, her son had the right to continued medication for the leukemia that reared its ugly head after a remission from his non-Hodgkins lymphoma, leukemia being a cancer with an 85-90% recovery rate, that according to the boy’s doctor was being successfully treated. His mother was not a medical professional after all, was legally charged with his care. This boy had a right to his life, however long or short it was meant to be. He was, literally, at his mother’s mercy.
I’ve never met Kristen LaBrie. I have no idea whether what she declared on the stand is true, that she was simply so afraid at how sick he was after taking the medications, terrified that if he fell further ill from the treatments she had to pry open his mouth to give him, that he would die. I will never know if the prosecutor’s spin is more apt, portraying a woman riddled by resentment at the small role her ex-husband played in raising their son, a boy reportedly consumed by allergies and severe autism years before cancer completed the ailment trifecta. I will never be certain, as with some cases that come before a court of law, if infused within the truth, in this circumstance, are varying shades of gray.
After I had read a few related articles to this story I tried to envision what the last few years had been like for this woman, regardless of her true motivations. The articles stated she was broke, and for the most part the sole care-giver in this child’s life. I tried to imagine my existence as hers, and I just couldn’t fathom it. I removed my educated, loving husband from the picture. I evaporated the security of salary, the knowledge we can provide for our sons’ needs on a daily basis. I destroyed the sanctity of sleep, because one of the side effects of the chemotherapy medications was her son’s insomnia, which of course, meant hers as well. I stripped away all pretense of any pleasure, and replaced it with the agony of watching her son suffer on every level possible, both physically, and with certitude, emotionally, for years. I literally cannot envision how one endures that much pain.
But her son couldn’t speak for himself. She was his mother. No matter what, she had a moral imperative to treat him.
There is one other absolute truth here that arises from this story of which I am certain, particularly during Autism Awareness Month. I am so grateful for the increase in articles regarding the housing situation for adults on the spectrum, and the coverage of the ever-growing number of states jumping on the insurance bandwagon to offer families some financial relief. I am thrilled that more and more school districts’ programs are being lauded in the press for their efforts, and that increased attention is being paid by pediatricians nationally to earlier diagnosis and treatment. Reading about documentaries highlighting the triumphs and challenges of two articulate adults on the spectrum makes me happy, as does an international campaign to “light it up blue”. To me, it all signifies progress, is a continued celebration of collective triumphs.
But I also believe it’s crucial to be aware of what’s happening to those around us, those individuals comprising our daily world who are struggling with the all-pervasive ramifications of this disorder, one that can often overtake our lives. It is crucial we are aware of how that neighbor is faring, how that nice mom in the special education PTA who looks so stressed is doing, why that father of the child in our son’s class looks so sad at the spring fling. We need to keep our ears, eyes and hearts open to what I consider our extended family, and offer a hand whenever possible. Mitigating the hardship of one family’s existence is just as important as lighting a talk show stage blue, writing a book that conveys comfort to thousands, or creating legislature that eases that backbreaking load families often carry for decades. And yes, we continue to require autism awareness on a worldwide scope.
But in order to prevent the recurrence of a tragedy like the death of Jeremy Fraser, I believe we require it just as much at home too.
April 1, 2011
It’s the start of Autism Awareness Month today, with the fourth annual World Autism Day to follow tomorrow, April 2nd. I’d just like to thank everyone in advance for turning their porch lights to blue tomorrow evening (hell, you can do it the whole month if you’d prefer!). If you have no idea what I’m talking about, please refer here to a beautiful letter written to President Obama by Jess from adiaryofamom. No further explanation necessary!
I’d also like to say thanks as well to everyone who has contributed to any of POAC’s four upcoming walk-a-thons, the first of which is tomorrow, April 2nd, at Blueclaws Stadium in Lakewood. Looking forward to seeing you at the walk, and again, thanks for your support!