May 16, 2013
Turning Ten
My son is ten today.
It’s early in the morning on Mother’s Day, and I’ve woken with the roosters not because I want a jump-start on the day (I’d never give up sleep for that), but because I’ve managed to contract my annual bout with bronchitis on the very weekend I should be celebrating my anniversary, the birth of my eldest son, and the high holy day of mothers.
Before I begin to write I check to make sure both of my progeny are still deep in slumber (lucky for them, they are), and I shuffle back to the computer, conceding to my Puritan ancestry’s need to accomplish something.
It’s difficult for me to believe that I’ve been doing both the mom and the autism gig for a decade now, although the lines on my face from worry attest to the trials and tribulation of the last ten years. This family has come through fire, two states, a half dozen school placements, dozens of doctors, and yet we’re still here (hallelujah!), and on most days, intact and happy.
I always feel sentimental on Justin’s birthday, being that he is the child who made me a mom, but today seems special. It’s not just that it’s Mother’s Day, and I am mature enough not to mind sharing my day with my boy. It’s that we’re in double digits now, and that seems significant, even earth shaking.
My son is ten today.
I think I hear his familiar “eeee!” resounding down the hall, so I slip silently to his room and enter into the pitch darkness he craves, and wait for my eyes to adjust. I’ve imagined his cry, instead am witness to my son buried in blankets twisted around his body, only his face shining out to me from under cotton and cloth.
There seems to be a hint of a smile on his sonambulent countenance, the wisp of anticipation for the day to come. My boy knows something’s up as last night I asked him if he wanted his birthday presents the next day, and I was treated to a resounding head nod of such force I worried he’d strain his neck. He knows the drill now, expects good things will befall him.
He gets it.
Today his father and I will regale him with gifts, but the truth is the most important gift given today will be his presence, his place on this earth. Soon I will be called upon to clothe, feed, clean-up and exercise my general mommy duties, but for just a few moments more I plan to revel in my son, the wonder that is my boy.
My son is ten today.
I ponder the way he embraced his teacher during their post-Hurricane Sandy reunion, refusing to disengage from her embrace for the better part of an hour. I conjure up the image of his brilliant smile when his neighborhood “girlfriend” comes to call, his delight at her presence.
I think of the photos from the slideshow we saw at his school’s gala, the ones where he is so intensely focused on his teacher, so eager to learn. I remember his pride at learning to “steer” his horse, how he sat straighter in the saddle each time he went past me, his proud gaze locking eyes with mine.
I feel gratitude for the boy who tolerates his brother’s exuberant nature, who accepts the hugs and tugs that comprise his relationship with his younger sibling. I envelop myself in the glory that is his “nighttime self”, the satisfied grin and kiss he bestows on me every night prior to slumber, letting me know he did indeed have a good day. I recall the first time I held him, this hard-won longed-for babe, and the way his fingers grabbed mine so tightly I thought he’d never let go.
In many ways, he hasn’t. Yet in the most important ways, thankfully, he has.
The strident strains of “eeee!” are now clearly resounding down our hallway, and I hustle down the corridor to quiet him a bit, as his brother still sleeps. I enter his room and am embraced before my eyes have time to adjust, and I whisper “happiest of birthdays” to my boy, my pride, my love. He looks back at me with love as well, and takes my hand to begin what this year will be his day.
I pull him back for one more quick embrace as he will soon be on the move, more difficult to contain. I whisper “thank you for being my son Justin” and he briefly hugs me back, then escapes my grasp to move on to other things. I carry his warmth with me as I make my way to the guest bathroom, and smile.
My son is ten today.
May 11, 2013
Walk-a-thon for Someone Special Needs You
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)
May 4, 2013
Teacher Appreciation Week
Today’s post is in honor of Teacher Appreciation week, and is dedicated to the teachers, therapists, administrators, and support staff who work with all of our children.
Dear Educators,
It’s been almost nine years since my eldest son was diagnosed with autism, and it would be the understatement of the year to say it hasn’t always been easy. My family’s journey with autism has comprised two states, dozens of doctors, therapists, teachers, and Early Intervention practitioners, and by this point I feel as if we’ve seen it all.
For us, however, there has been one shining thread of competence woven throughout all of our trials, and I feel compelled to speak of it today.
In essence, all hail to the teachers.
It hasn’t all been smooth sailing of course. There were a few IEP meetings along the way where I cried (one was at the thought of my eldest son moving on to a new teacher in the coming school year, perhaps that one shouldn’t count). Frustrastion regarding my boy’s academics and behaviors has intruded on occasion, and a few times I felt I wasn’t truly being heard.
For the most part however, my family and the bevy of educators assigned to both our boys have been able to play nice with each other, and for this, among other things, I am eternally grateful.
I’ve felt that the dedicated men and women who’ve worked with my sons have respected them, pushed them when appropriate, and equally importantly, have liked them (and trust me, at times both of their behaviors have not been particularly likeable).
Truly, none of them are paid enough.
So today, I’d simply like to say thank-you. Thank-you to the speech therapist who stayed up all night to reinstall the programs my oldest son deleted from his iPad, just because he thought erasing them all would be fun.
Thank-you to the child study teams who tweaked, manipulated, and created the perfect IEPs for seven years for my kids, then made certain they were enacted. Thank you to the administrators who gave us time during that long, awful period when Justin resumed his aggressive state last year, waiting months while we figured out how to quell the terrible tide of his anger without having to remove him from his school.
Thank-you to the aides, the life-blood of any classroom (I know, because I’ve been one), who’ve not only tolerated my sons’ non-compliance at times, but have regarded it as a worthy challenge.
And last, but certainly not least, thank-you to the special education and regular education teachers in three different districts (it takes more than one village sometimes) who have challenged my children, believed in them, loved them, and put up with me to boot.
The latter statement should earn them all the medal AND the monument.
You have not only made a tremendous difference in the lives of my sons- you, through your kindness, your commitment, and most importantly perhaps, your competence, have given my family a life.
For once, all I have left to say is thank-you.
April 28, 2013
The Nod
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.
http://iteachspeech.wordpress.com/2013/04/30/an-honor/
April 19, 2013
Autism Awareness Month- A Celebration of Autism Advocates
Ed. Note: April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism.
As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals.
Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the third interview in the series.
Vincent Scanelli
Vincent Scanelli is the president of the non-profit Someone Special Needs You (SSNY), as well as the president of the Douglass Organization for Occupational and Related Educational Services, Inc. (DOORS) program at Rutgers University. He serves as Vice-President for Ride for Autism, a group home liaison for New Horizons in Autism, and as a Community Work Partner for the Monmouth County Chapter of the Arc of New Jersey.
Vince is the owner of the Colts Neck Insurance Agency, and has twenty-five years of expertise in financial planning as well as specializing in special needs and estate planning. He has two daughters, and an adult son on the autism spectrum.
Kim: How did you come to be an autism advocate?
Vince: Honestly, it was because my son was born. My family was born into autism, all we do is what we’re supposed to do for our kids. I really give credit to people who do this and don’t have kids with autism.”
Kim: How did SSNY and your future group homes come into being?
Vince: My son Angelo showed me the way. When he was little his mother and I wanted him to have peer relationships, but there was nothing out there, no groups. I got together with a couple of other parents and created SSNY, where kids with disabilities are paired with neurotypical teens for various activities.
We wanted Angelo and other kids to be able to get together and have some peer and social interaction, so we started doing monthly events. As Angelo has aged, our focus has shifted off into group homes. After this I’ll probably investigate work programs.”
Kim: How did you get started with creating group homes?
Vince: We started thinking about doing all this back when Angelo was thirteen, and he’s nineteen now. A friend of mine who is a planner knew I wanted to do a farm, and he knew a builder who was involved with affordable housing. We then connected with New Horizons in Autism, and got a grant from Marlboro, NJ to move forward with the plans.
Marlboro gave us part of their Council on Affordable Housing (COAH) funding, plus we partnered with a special needs housing trust fund (a state program). After that we would be able to purchase a house through New Horizons in Autism.
Everything was approved in July, but now the plans are stalemated, and we hope to move forward soon. We have enough money to buy a house, renovate it, and put three adults in it.
Kim: What do you envision for the property you want to turn into a farm?
Vince: We need about two million dollars to complete everything, but the property is ready, it has been donated by a large development called Overbrook Farms. It sits on twelve acres at the end of a cul-de-sac, has two barns, and it’s just beautiful.
It will have ten beds, two wings for five adults each. Since we have the barns I hope we will be able to do many different farming activities, raise alpacas, maybe have horses, and host events. Hopefully we’ll get the community involved in it as well.
My goal is for the adults to work the farm. I’d love to see the farm provide jobs for the people who live there, and for people in the community as well.
Kim: What are your dreams and plans for your son over the next five-to-ten years?
Vince: I just want him to be happy. I want him to be safe, have a good quality of life, and be the best person he can be.
March 23, 2013
Kick the Autism Bucket List
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!
March 18, 2013
The Whole Tooth, and Nothing but the Tooth
“Mom, I lost my tooth!” my youngest son cries with wonder, a shout coupled with excitement and tinged with a bit of disgust. I run over to the kitchen table and respond “Let me see!”, and indeed, when he carefully unfurls his fingers, it appears the tiny white object nestled in his palm is one that formerly resided in his mouth.
He smiles up at me with his new toothless grin, which I know I’ll come to adore as long as it lasts, and asks me if we can put it under the pillow tonight. I respond with an emphatic yes, and ask him what he’d like the tooth fairy to bring to him. He looks me straight in the eye and answers he wants to go to China.
That’s my boy. No pedestrian quarters for him.
I tell him that although the tooth fairy is quite efficient in her prize dispensing that unfortunately travel agent is not part of her job description, and he begrudgingly knocks his request down to a Phineas and Ferb book, a desire his mother actually can fulfill. He then runs to the bathroom to see the gap where his tooth once resided, touches it gingerly with his finger to see if it hurts.
It doesn’t. Satisfied, he runs back to his seat for lunch, already asking me if we can go somewhere today as his mother simultaneously figures out how she’ll escape to Barnes and Noble before nightfall. Soon he is focused entirely on consuming his lunch, tooth loss forgotten as he regales me with his day in the fast-paced world of kindergarten.
We’ve entered the arena of lost body parts. My little boy is growing up.
There are signs of it everywhere. I see his growth in the way he’d rather struggle to put on his gloves by himself than deign to ask for help. I witness his independence when he pushes his father and me out of the room at bedtime so he can read his last story alone. I acknowledge his progress when he clamors for privacy in the bathroom, an enclave which previously required adult attendance for him at all times. My not-so-little one is intent on figuring it all out for himself, and that’s as it should be.
He’s fine with it all. It’s just his mother who has to learn to adjust.
It’s not that Justin doesn’t strive for independence too. In the past year my eldest son has acquired so many new and important milestones, from completely dressing and undressing himself without prompts, to helping clean up at dinner which requires a number of prompts (I can’t blame him, I don’t like to do it either).
He no longer shadows us constantly, prefers to be with us but not on top of us in a room unless he’s hungry, then all bets are off. Justin’s making his way in the world too, at a different pace and trajectory than the rest of us, but his way nonetheless.
It’s simply hit me that while on some level my firstborn will always need our care, his little brother will not.
I realize that relief is welling in me, threatening to make this an emotional rather than a triumphant moment, and I push it back for later contemplation so I can be here, in the now, with Zach. I can’t stop my mind however from briefly returning to those dark days when he stopped speaking, playing with toys, or interacting with those he loved in any comprehensible way.
He has come so far from that painful abyss, the one in which he resided for such a seemingly endless time. My boy will have choices, although I no longer feel his life will necessarily be more fulfilling than his brother’s.
Zach is forging his own path, one that won’t always include us. To the core of my soul, I am eternally grateful.
He finishes his lunch with zeal and asks to go upstairs and place his tooth next to his brother’s, in the small silver receptacle I received at Justin’s birth. I take it down from its resting place and note that it needs a good polishing (and also note that this probably won’t happen). Zach takes off the lid dramatically, declaring with wide-eyed wonder that his deposit is bloodier than his brother’s, a fact which apparently is quite cool. He places his treasure inside and bounds from the room, already on to his next quest, to best me in yet another light saber duel.
I bet you can guess who will win.
On tippy-toe I replace the tiny teddy bear in its sacred spot, then prepare myself for a battle which will invariably include several stung knuckles. I realize I will have to practice this slow attrition of need, of always being central to his life. It is both a glorious and difficult path.
And one I will gladly walk with him.
March 12, 2013
Talk Amongst Yourselves
Dusk is fast approaching, and as I swing into Justin’s speech therapist’s driveway I see a shadow rocking back and forth behind her glass door, its rhythm momentarily interrupted by the arc of my headlights as they cut across my son. As I turn off my engine I hear Justin register his approval at my arrival, his happy “eee” cutting across the lawn as I make my way to the front stoop. He is beaming, and I can tell he had a good session by the look on his face, and the similar expression on his therapist’s.
“How’d it go?” I ask, as Justin simultaneously shoves his big red goody bag into my arms and tries to push me out the door. “Today was pretty big” she replied, and I thwart Justin’s plan by putting down the red bag, and giving her my full attention. “While he was waiting for you at the door, he asked for you without prompting” she says with a grin, and mine matches hers, because we both know this is a momentous moment.
My boy wanted his momma, and he asked for me with words.
Justin’s been using the iPad more at home and in the community, and just a few months ago asked for me spontaneously while using the device (I was on a twice yearly shopping expedition with my sister-in-law and niece, it figures). We’ve been practicing the sentences “I want Momma”, “I want Papa”, and “I want Zach” (the last uttered sans “Z”, it actually sounds cooler that way), but to date they’ve always been prompted and repeated out of context, perhaps after teeth brushing, or while waiting for the school bus.
It’s been exciting to hear my eldest child utter a full sentence, fun to hear Zachary (the child who never stops uttering full sentences) cheer his big brother on and encourage him. To me, however, the entire process doesn’t mean much if it’s conducted without meaning, if the sounds are solicited from him when he may very well be thinking about his bed, or popcorn, or the hundredth rendition of “The Very Hungry Caterpillar” that I will likely be reading to him that night. His mother craves context, and today, I believe my son has given it to me.
Today, he waited at the threshold, was asked what he wanted, and clearly requested my presence spontaneously for the very first time. In the movies, I would have driven down the cul-de-sac immediately as the last strains of his short “a” sound drifted into the atmosphere. In real life, it took me a few more minutes to arrive, which gave him time to make a half dozen more attempts to verbally summon me, enough effort for his therapist to make certain she’d heard him correctly. To be completely honest, I’m not sure how many people would comprehend the first two-thirds of his phrase, although with satisfaction I say that his “momma” is clear as day.
It’s taken a decade of work, but every vowel, every hard-won consonant, was worth it.
As always, I have to follow this accomplishment with what I like to call the “autism caveat”, which includes the fact that in the future he may only repeat this charming sentence on demand, or perhaps never again. Although his talented speech teacher could easily get him to recreate the experience for me now I won’t ask her to, because it’s enough to know it happened of his own will, his own ability. For just a moment I recall that studies proclaiming that children with autism who don’t speak by four have recently been proven false; that in fact, more than half become proficient speakers, and two-thirds can master simple phrases.
Then my son once again shoves a heavy, huge red bag into my hands, looks at me with utter urgency, and propels me to the door handle. Time for this momma to cease her musings.
I capitulate to his demands and release him from this house, but I am elated at his triumph, and for a few moments I allow myself to bask in it before I contemplate what I’ll make for dinner. I hug his teacher good-bye, and follow his galloping form back to our vehicle, his own sounds of triumph at escape punctuating the brisk air. I acknowledge we just might have the start of something great here.
And as I buckle him into his seat he grins at me, and I swear he knows exactly what he’s done.
March 5, 2013
POAC Autism Services Walk-a-thon
I know. Repeats suck.
Today I hope you’ll bear with me however, because I’m going to recycle something I wrote two years ago, a post that is dear to my heart. It’s about POAC Autism Services, and one of their many annual walk-a-thons in which my family participates every year.
This year it will be held on Sunday, April 28th at 12:00 in Blue Claws Stadium in Lakewood, and as usual, I anticipate they will have a stunning turnout. Even if you don’t contribute financially, please consider walking with us that day. If you have a relative, friend, or neighbor who has a child with autism, just your presence and support will make a difference in their lives. Thank you!
“Elmo should go back to Sesame Street, Mommy” says my youngest child as he hunches down in his stroller, in part to avoid the wind whipping mercilessly around the stadium on this early April morning, and in part because Elmo is clearly lost, and therefore should leave immediately. Buster, the Lakewood BlueClaws mascot is here as well, but today Zach is not impressed, wants solely to traverse the gusts making it difficult for me and my mother to even gain entrance into the park.
It’s World Autism Awareness Day, and not coincidentally the first of several walk-a-thons to be held around the state of New Jersey for POAC Autism Services , and it feels more like early March than spring. I am confident a breeze will not prevent anyone from participating in today’s event however, am excited that thousands of people from around the state will be donating and walking for a cause that perhaps has completely infiltrated their lives, and their hearts.
I know it has done so with mine.
As we wheel Zachary through the gates I allow myself a moment of self-congratulation, because we’re here without Justin, and for the first time, perhaps ever, I don’t feel the slightest bit guilty. He would have been upset long before we reached our destination, confused by a trajectory of roads that lead him to an open building with nothing inside that would interest him, although there will be plenty here to captivate Zach.
So, I’ve left my oldest with his father to attend this month’s autism movie. Jeff later reported almost nobody was there for this showing, so I’m hopeful they all attended the walk. Although Zach has autism as well, the progress he has made has been so stunning I am confident he will one day be able to harness the anxieties and impulsivity that herald his brand of the disorder, in a way in which his older sibling will never be able to do. While I walk for all children on the spectrum, my primary motivation will always be for Justin. I’m sad he won’t be participating with us today, but I know he’s in a happier place.
Hopefully, Jeff is too.
As my little family of three wends its way through the crowds I spend a few moments taking it all in, the people ensconced in boldly colored t-shirts proclaiming their love for someone on the spectrum, the vendors and sponsors with their brochures and enticing crafts for little hands. I can only imagine how much planning it took to create this day, what combined effort and expertise went into an event of such magnitude.
Every face I walk by seems cheerful, from those hawking autism “accessories”, to those preventing an unhappy child from a meltdown in the stands. There is a palpable aura of peace here, of parents stripping away the confines of an often harrowing existence, and simply reveling in a day, worldwide, about us.
And with all due respect, I kindly assert we deserve it.
In what seems no time at all Zach conquers three moon bounces, a playground, and a multitude of crafts, and it’s time for the exercise portion of the day to commence. Gary Weitzen, executive director of POAC, descends to the bottom of the stadium to address the crowds, and it seems as if even those children and adults who are vocally stimming quiet a little, are loathe to miss a word.
He speaks of his gratitude to everyone who contributed both physically and financially today, to those who continue to underwrite an organization which is the largest provider of free autism trainings in the entire state. Reference was made to an impressive figure raised that almost hit the six figure mark, and may yet do so before the month is through.
Gary cheerfully reminds the crowds of all POAC Autism Services does for families who might otherwise have limited recourse to recreational activities, always for no cost. And after a stunning rendition of Christina Aguillera’s “Beautiful”, we are free to walk, to continue to take steps in the right direction to heal our children, our community, and our hearts.
I pause for a moment before we begin the sole loop my family will participate in today (a four-year-old has his limits with philanthropy), and as the sun slips over an awning that previously provided shade I am required to squint to take it all in, to view the masses moving in quiet solidarity around the circumference of the field.
There are spaces of course, but as I remain still, I notice that slowly, steadily, they are being filled, as some teams lag behind, and others proceed at a quicker pace. I know if I stood here long enough I’d behold one great, cohesive circle of commitment, seamless in its synchronicity of volunteers, parents, children, teachers and therapists, all striving mightily to fill the gaps.
And filling the gaps is exactly what POAC Autism Services has done so beautifully for well over a decade now, and I’m certain will continue to do so for many more to come.
Zach looks up at me impatiently, imploring me to return to the relative warmth of my car and take him home for lunch, and I concede to his desires. I take one last look back from the threshold of the stadium, and am rewarded by a thinning of space, of the blankness between what has been offered to our children, and what should be provided to them.
I am so grateful this organization has stepped up to help erase those voids, so appreciative of all those who made it possible to be here today. Once again, we find ourselves a part of a community who cares. And I am reminded anew of what Gary so eloquently communicated to us all at the POAC Gala, mere weeks ago, in his welcoming speech.
We are family, indeed.
Check out POAC Autism Services on their website at: http://www.poac.net
February 27, 2013
Wedding Bells Ring
Today’s post will not be about autism.
I know, it’s a stunning departure from my usual topic, but this post is going to be purely FUN, because for seventy-two hours recently I got to leave autism (and let’s be honest, my kids) behind on a trip to Florida for my little brother’s wedding, and I’d like to share. No, today’s missive will be a mostly self-indulgent exercise in how proud I am of my brother, and how much we all love his new wife.
If I don’t see you until next week, I understand.
It is extremely rare that I get away (as rare as having two kids on the spectrum, and there I go, breaking my promise already), and frankly I couldn’t have done it without the help of my brother-in-law and his wife, and my best friend. The only sad part of the weekend for me was that my husband had to stay behind and keep the kids alive, and he truly wanted to be with us to celebrate. The issue was that we’ve never left my eldest son, who has severe autism, with anyone other than his grandmother. Said grandmother stubbornly insisted on seeing her son married, and was thus unavailable.
So, my husband pitched in. Someone had to take it for the team.
We could probably have pulled it off, as our extended family is comprised of very competent people. The truth is, I simply couldn’t leave Justin, who can’t speak and has limited communication even with his iPad, with people who aren’t able to read his mind as Jeff and I can do.
Seriously, by this point in our parenthood journey my eldest son can simply walk over and look into my eyes, after which I can usually discern his need for either food, a potty break, or which DVD he wants from their hiding place in the garage (Jeff and I are so good at this we guess correctly nine times out of ten). At some point I anticipate we’ll be able to leave him sans grandma, but that point hasn’t arrived just yet.
So, this post is for my brother and his bride, with whom we are all completely smitten. Truly, a more beautiful, bright, loving individual does not exist on this planet, and we are all so grateful she found my sibling seven years ago, and brought such peace and happiness into his life. My brother’s path has not always been the easiest of journeys, and it’s just so wonderful to see how they complement each other, how they are truly meant to be together.
If we’d had any doubts (and we didn’t) all we had to do was listen to his speech at the wedding ceremony, with my brother the lyricist pouring all he had into a tribute to his best friend and the love of his life (trust me, there wasn’t a dry eye in the house). Truly, he rocked his vows, just as I know he’ll rock this marriage with his innate kindness, compassion, and loyalty.
So, once again I propose a toast (sadly, with a Coke 90 can rather than champagne) to my courageous, insanely gifted brother, and the stunning woman who will grace his life. I wish you both only the best, and can’t resist leaving you with these parting words, simple as they may be.
To my brother and his bride- live long, laugh a lot, and love well.
