April 28, 2013
It’s Thursday morning, just a regular day before school starts, and I am trying for what seems the hundredth time this week to figure out something my eldest child will possibly consume for breakfast. Over the course of the past seven days I’ve hawked three different cereals, pancakes, waffles, even French toast, all to no avail.
I hate sending him to school on an empty stomach, but I seem to have run out of options as I whip eggs and milk into the frothy concoction which will soon fill up my stomach. I’ve offered Justin eggs before, which he has regarded with all the enthusiasm of a patient approaching an overdue root canal. Today, just for the heck of it, I turn to look at my tall son who is immersed in his DVD player and ask “Justin, do you want eggs?”, fully expecting no response whatsoever.
And in mid egg-flip, my son looks me in the eyes and nods an emphatic yes.
I fling the spatula down on the unsuspecting stove, and run over to my boy, afraid I’ve misinterpreted the first time Justin has answered a “yes or no” question in our home. I turn off the DVD player and angle him toward me, and pepper him with queries I’m certain he’ll soon find tiresome.
“Is your name Justin?” (nod yes). “Is your name Zachary?” (nod no). “Do you think your mom’s gone crazy?” (okay, I didn’t really ask that one, but contemplated it for a moment there). Truth is, I asked about a half dozen more close-ended questions, and he responded appropriately every time. I did what I lovingly call the “happy language dance”, rescued my almost-doomed eggs, and served my son a generous portion of my take.
First a few spontaneous exclamations of “Mama”; then requesting me unprompted on the iPad; now this. As I drink my orange juice, I admit, I’m a bit verklempt at these new developments.
I recently read a study informing me that while researchers previously thought that the language window swung firmly shut on most autistic children by age four, newer studies have shown that most children on the spectrum do acquire some language. In fact, the study says that almost half go on to be fluent. While we’ve kept Justin in private speech therapy and continue to work with him at home, by the time he turned nine and had shown no real progress, I began to let my dream of him having some semblance of functional speech go by the wayside.
My disappointment was somewhat mollified by the fact he is able to use his iPad quite functionally, particularly in school where he employs the device for requests and academics. In those dark, desperate days of toddlerhood when his primary method of communication was digging his fingernails into my tender flesh, I used to pray for any methodology whatsoever which would facilitate communication, be it technology or a Ouji board (again, those were desperate days).
As he’s grown and has shown great aptitude for various media my fears we’d never share even the most rudimentary standards of language disappeared, and I’ve grown quite fond of ProloquotoGo, the program through which he is able to make his needs known. Still, I admit deep in my soul I longed for a word or two, or even for him to have the capability to answer those simple yes and no queries without running to his device.
Now, he can.
There’s a great article on the Autism Speaks blog by Geri Dawson, outlining new findings about speech in autistic children, and nine other things we know about autism that we didn’t know a year ago. Among those findings, researchers are developing medicines to address the core symptoms of autism, namely communication deficits, social withdrawal, and repetitive behaviors.
Symptoms of autism are now being detected in children as young as six months of age. Prenatal folic acid, taken in the weeks before and after a woman conceives, may reduce a child’s autism risk. We are slowly making progress in deciphering autism’s many mysteries. My son, after a long, sometimes agonizing wait, is making progress too.
His mother couldn’t be more proud.
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 12, 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 second interview in the series.
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 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.
February 20, 2013
I’ve recently become a Downton Abbey devotee, am finding this epic saga about the English aristocracy and those who serve them to be absolutely riveting. A good friend of mine convinced me to watch it, knowing that even though I’m more a fan of shows with medieval settings (The Borgias), or serial killers (Dexter), that I would love it as much as she does.
She was right, and whenever I have the time to sneak in an hour of the trials and tribulations of this British family and their staff I claim the couch and remote, and indulge. I’m only halfway through season two (I’m told someone pivotal dies soon, please don’t ruin it for me), but I’m already quite attached to the characters, either rooting for their choices, or alternately (and sometimes simultaneously) appalled by some of their comments.
The story takes place almost a hundred years ago, and as I watch the episodes I’ve had time to think about how much things have changed since the early nineteen hundreds. Women in the UK are no longer struggling to attain the right to vote. Having babies, (or even sex) out-of-wedlock, will no longer (in most instances) get a woman shunned from the world.
I’ve read that being a member of the English peerage is no longer what it used to be, that class lines in England have been blurred and crossed to a considerable degree since we said goodbye to the twentieth century. I can’t see these transitions as anything but a positive outcome of activism, being that I’m a firm believer that we should be judged on our own merits, not on our ancestors’ bloodlines.
I believe most of the characters at Downton Abbey would have my head for that (some of the downstairs staff included).
As I wrapped up a particularly riveting episode last evening (will Matthew make it back from France? Does Sybil find forbidden love with the chauffeur?), I couldn’t help but feel slightly frustrated with certain characters, caught myself judging their narrow-mindedness without considering the weight of societal approval back then. I had to constantly remind myself what being “shunned” meant socially, economically, and emotionally for those who strayed from their appointed class lines, as well as what it meant for those who parted from society’s rigorous moral code.
Still, I longed to reach through my flat screen (if you’re reading this husband, don’t worry, I won’t), and shake those actors at times. I wanted to implore the staff of Downton Abbey not to judge Mr. Bates on his physical imperfections, but instead on the contents of his generous heart. I felt like informing the Dowager Countess that she should just get over herself, and celebrate the fact that her granddaughter might be in love, even if it is with the help. I desired to remind the second Grantham daughter, Lady Edith, that the large stain on her dress at dinner was not nearly as important as the fact that their family’s trusted butler might be dying right in front of her.
I found that last scene particularly galling, but that’s just me.
As I turned off the DVD player last night, remembering how to return to regular cable and being inordinately proud of myself, I found myself wondering what the next hundred years would bring for all of us, particularly those considered “disabled”, either physically, mentally, or emotionally.
For one thing, I hope this century sees the end of the word itself, with the word “differently-abled” being used to replace one that sets limits and defines a person, rather than one which focuses on their strengths and the beauty of their differences. Truly, eradicating this word is more important than you might think, because it sets the stage for how a person is viewed, immediately putting them at a disadvantage.
Along with “retarded”, I’d be happy to see that one go.
I’ve been fortunate enough to live through almost a half century (!) of progress for African-Americans, women, and the gay community, among many others. I’ve read, heard, and spoken to people whose views have changed regarding each one of these groups, and it’s been so heartening to witness not only their acceptance of those who are different from them, but their ability to embrace those differences. I have hope this acceptance will extend to my sons.
It is my greatest wish that my children and their peers will one day live in a world where their differences are respected, not overlooked, but instead celebrated. I hope this will transpire during my hundred years (people in my family live insanely long lives, so there’s hope). Perhaps, if I am incredibly lucky, I will one day look back at the long arm of a century lived and recall with incredulity that people once dismissed those who didn’t conform to a picture of “perfect”, and reflect upon how antiquated those opinions were.
Perhaps I will get the opportunity to smile at their folly, and wrap myself in the certainty that indeed, times have changed, people have changed. I dream that one day I will inhabit a world that has been made a better, more welcoming place for my sons, and all who walk the path of “difference” with them. I dream they will be happy, productive, and respected.
And I hope, along with rooting for Sybil and her outrageous love, that this is one dream that actually comes true.
February 15, 2013
My youngest son turned six this week, and amidst his numerous celebrations (his mother’s birthday still lasts a month, he deserves the same), I’ve caught myself marveling over the fact that my last child is a third of the way “cooked”. It sounds so cliché, but it really does seem like just yesterday that he made his early debut in an ice storm, and returned home to have his big brother greet him by attempting to shove a doll’s baby bottle in his mouth.
So much for autistic kids not imitating.
He’s come so far my little one, particularly since those dark days when Zach stopped speaking, looking at us, or relating to anyone he loved in any discernible fashion. He has made particular progress in the last year of his life, learning to control his impulses (most of the time), acquiring difficult lessons like losing sucks but it happens, homework is a necessary evil, and his computer access will never be “on demand”. He works hard, my boy, and with his posse of teachers, therapists, family members and several meticulously constructed behavior plans, most of the time he is a delight.
He’s only six, so “most of the time” is pretty good.
I was witness to how much he’d grown at his kids’ birthday party Sunday, when the streets of House of Bounce got a little rough for him, and he chose to remove himself a few times from the oh-so-typical fray. After a minute or two of sulking on the floor while his mother tried to quell her inner helicopter, he eventually returned happily to the melee, mostly of his own volition. A year ago, in the same situation he would have spent his birthday party huddled in a corner, head down and arms akimbo, and he would have been out for the count.
Instead, on no less than three separate occasions he employed his powers of self-regulation, and at its finale declared this year’s bash as the “best party EVER”. In theory this should be the conclusion of this post, with perhaps a mention of how he actually thanked a few of his friends without prompting, and that his mother didn’t devour four pieces of cake (even though she wanted to). After all, it was his birthday, and the story should end here.
And it would, except for the fact that his big brother stole the show.
I’ve written about the boys’ relationship before in this blog, explained how they get along pretty well but generally don’t interact with each other all that much. In an attempt to remedy this my husband and I have attempted to contrive opportunities for interaction between the two, opportunities which usually didn’t end well. Our boys’ interests are quite different, and we’ve learned to respect that fact.
On occasion we have seen some “cross-over”, as when Justin moves over an eighth of an inch to allow Zach a visual on his DVD player, or the one time Justin wanted to play a board game with the entire family (I wanted a parade). Often the boys simply orbit one another, taking a momentary interest in each other’s path, co-existing in peace.
There are definite benefits to siblings with dissimilar interests. It’s the severe autism bonus.
So yesterday, as that “inner helicopter” whirred frantically each time my boy’s angst seemed like it could only end in irreparable meltdown, I’m not certain I fully registered what transpired right under my nose. I know on some level I noticed Justin’s arrival every time Zach got upset, but was too engaged in the drama at hand to fully acknowledge the import of his presence.
In general my eldest son’s repertoire for bouncy houses is to take a few minutes to test out the goods, then spend the rest of his time walking back and forth the length of the establishment, perhaps rocking out to the piped-in tunes. He’s never interacted with Zach at any of these establishments (believe me, we’ve tried), so we pretty much let him do his own thing.
If he’s happy, we’re all happy.
Yesterday, however, was different. This past Sunday, as I desperately summoned my “mommy tricks” so that Zach would participate in his own damn birthday party, Justin came to my aide. Each and every time that Zach sought solitude my eldest responded with the solace of his presence, not too close, but just close enough. I know his actions offered comfort, even though Justin never said “I’m sorry, Zach”, or “let’s try something else”, or “it’s your birthday, come on!”. He never spoke a word of course, because he can’t.
But the truth is, he didn’t have to. He stayed each time Zach succumbed to the throes of despair, and left each time his little brother bounded up to try again. There was no other moment during the party in which they interacted, no point at which their separate interests overlapped. Justin saw that Zach was in pain, and simply came to help.
For once, Zach’s big brother was his champion.
Later, when his harried mother had time to process it all (and made sure she didn’t imagine it), I had to marvel in the sensitivity, the empathy so abundant in this child who communicates through an electronic device. Justin saw that his sibling was sad, and wanted to make him smile. Despite a dearth of words, he wanted Zach to know he loves him.
And for both my youngest and myself, this may be the best birthday gift ever.
February 2, 2013
“I wish Justin didn’t have autism.” I hear the words softly emitted from my youngest son’s mouth as we exit our church’s parking lot, and my stomach clenches mildly in response. I look in the rearview mirror at my son’s face, slightly obscured by a hat gone askew. We’d just been talking about Moses and the burning bush (I was so proud of myself for retaining at least one story from my own Sunday school days a century before), so his segueway was slightly startling. I took a deep breath, and asked him why he felt that way. He tilted his head a bit and said “Because then we’d like the same toys and movies and books. We could share and I’d have twice as much stuff.”
When you’re five, it’s all about the “stuff”.
I realize I’m holding my breath and I exhale, relieved that for now this wish is so simple, plus I won’t have to resent my husband for not being there to help me handle his query. I continue our drive, and for some reason a set of framed photos hanging in our foyer come to mind. The pictures comprise a triptych, where Zach is static for all three shots. Justin is in various states of watching his brother, then alternately looking at me. Last, in that perfectly captured final moment, he is actually nuzzling his younger sibling, eyes closed, apparently reveling in their closeness.
I’ll admit, there was some eye-welling when I realized what I had “on film”.
Zach pulls out his favorite request after asking for juice and pretzels, and I am once again relegated to the role of storyteller, a part I feel is just a wee bit too early for me to handle in my unfortunately uncaffeinated morning. I gear up for the task at hand after I’m told the cast of characters (Zach, Justin, Mommy, Daddy, and everyone from Star Wars except Jar-Jar Binks). I take a moment to think about where I want to go with this latest piece of fiction.
I have the strong feeling it will involve two brothers.
It does, and as I weave a tale of wars waged and battles lost I include two boys, both of whom possess a formidable will for what’s right, and impeccable character as well. There are choices to be made, forks in the road that require a devotion to the dark side, or to the light. Fights ensue with limbs lost.
This is a story for an almost six-year-old after all.
But amongst the challenges accepted and the rallying cries of war there are pivotal moments of character development, where the two protagonists must work together to save their aging parents (guess who they are), are required to comprehend each other in order to return the universe to those who follow the light. I highlight Justin’s strengths, his ability to notice when anything is “different”, his devotion to getting to the heart of the matter when he communicates, his affectionate soul.
I insert Zach’s innate stubbornness and facility with language, and create a plot where they both must work together to liberate their parents and save the day. I make certain that in order for my two main characters to collaborate they must appreciate each other’s gifts, and supplement each other’s deficits. In the end of course they prevail, with a relieved mom and dad showering them with praise, and a grateful universe regaling them with precious treasures.
Among the gifts is a talking light saber. I have to hold his attention while I tether those sometimes tenuous brotherly bonds.
As my fable comes to its climax I am relieved from my storytelling, and my small son begs me to pull over so I can ply him once again with juice and snacks (listening to my tales appears to make him famished). I quietly ask him if it’s okay that Justin has autism, and after a few long moments I hear a faint and slightly irritated “yes”. My son has rediscovered his Star War books, and clearly discussing neurological disorders is so yesterday.
I grin at his intense concentration, that focus he brings to all he does. I send out a request to the universe that Zach will permanently view his brother the way Justin sees him in that well-regarded triptych, that my youngest son will continue to adore his older sibling. I hope that Zach will always see the light in Justin and in himself, that effervescent force which flows from them both.
I let my mind wander back to that final photo of brotherly love, and smile.