April 14, 2014
It’s almost bedtime for the boys, one of favorite times of the day (for both selfless and selfish reasons,) and Justin and I are enmeshed in one of my, and I hope his, favorite games. My not-so-little-boy is wrapped tightly in his Elmo towel, standing in front of me on his bedroom floor with a huge smile on his face. He pushes my shoulder playfully, and quickly looks up at the various framed photos that grace the top shelf of his bureau.
As is our custom I ask him to point to me, his dad, his brother, and his beloved teacher, the one whom he embraces at least a dozen times a day. He does so with glee, and I follow-up with my staple queries involving these individuals, asking him if he loves them, waiting for my usual reward of his coveted nod in the affirmative.
Tonight however, the answer is a resounding “no.” If I didn’t know better, I’d wonder how we all fell out of favor so fast. Hell, just last night he loved us.
For me, communicating with Justin has always been a double-edged sword. Back when he was diagnosed at the tender age of seventeen months I clearly recall our pediatrician handing me a set of misprinted articles about autism, all of them pronouncing a dire verdict of what was to come. Every single one of them also included a piece describing severe deficits in language.
I can remember how I desperately tried to solicit sounds from him right after that pronouncement, clinging to the consonants I’d heard prior to his first birthday, striving to hear them once again. The few word approximations Justin had before twelve months of age were long gone by the time he received the autism label, and it literally took a decade before I began to hear their echoes, like lost friends returning to call upon us. Now Justin has about a dozen words on command, and is using “hi” and “bye” appropriately in context.
The words are thrilling to hear, but I admit not what I longed for a decade ago in my frenzied attempts to elicit language from my son.
The truth is however that even without the spoken word Justin and I have always seemed to comprehend one another. When he was younger he first communicated his wants and needs using PECS (the Picture Exchange Communication System). When his therapists felt he’d outgrown that method we moved him onto Proloquo2go, which he uses on his iPad predominantly for his academics at school. These devices helped us in ascertaining what he wants, but with his burgeoning maturity he often is able to meet his own needs without resorting to using technology.
Despite the fact I’d like to see him use his iPad more, that independence is a beautiful thing.
I’m thrilled he’s able to do so much more for himself, independence being an area of his development I focus on heavily, and I’m equally ecstatic with his leaps in communication. I’m grateful, as I try to be with all areas of his progress, no matter how small.
But I admit, for some reason this night especially, I still yearn for more.
He’ll be eleven soon, is solidly entrenched in his fifth grade year, the age group I taught for a dozen. I admit I want more than just the “nod,” the requests for juice, the demands for access to a toy. I long for access to the inner workings of his mind to know if he feels loved, if he truly feels accepted for who he is. I’m greedy to know if he really understands us when he responds to our “yes or no” questions.
I wish I could know his dreams.
I know even as I pen these hopes and desires that all I can do as his mother is keep encouraging him, keep working with him, and wait. I am terrible at it, but there is no other option. Perhaps, and the odds are against me, one day I’ll make progress in this area too.
I shelve my ruminations for another day, and my beloved boy looks me in the eyes and pulls me in for one of his signature kisses.
And for just a moment, it is enough.
April 7, 2014
To the casual onlooker it was not a remarkable scene. A middle-aged mom trudging through the rain, huge beach bag slung precariously over her shoulder while clutching the hands of a tween and a younger son, heading for the relative paradise of a movie theater overhang. If anyone had cared to look they would have viewed a grim determination in her eyes, a desire to reach her destination etched into the lines on her face. Someone might have wondered why she looked so serious, as it was just a day at the movies after all.
Except, it wasn’t simply that.
It was the first time she’d ever taken both her autistic kids on an outing, solo.
I’m aware that taking two or more kids to run errands or attend an event is not a rare occurrence in neurotypical world, and to some extent not in the world of autism either. Trust me, my reticence in bringing both boys out on my own was not due to a lack of desire, but rather due to a need to keep both of them safe.
For the last few years Justin has often refused to remain in even the most entertaining locations for more than half an hour, and until now brokering deals with my younger son about leaving places early was simply not in the cards. Also, both are impulsive and had a tendency to try to run away if annoyed (or in Justin’s case, if he’d sensed a carbohydrate was nearby.) It just wasn’t safe for us to venture out on our own, so either I’d corral someone to go with me, or we’d stay home. Since I’m an out-and-about girl this situation did not sit well with me, and I longed for the day we’d brave the wilds of the world just the three of us.
Finally, that day has come.
I was able to make a deal with Zach that if Justin wanted to leave the movie early we’d do so, but that he’d get to view it again at another date. I explained to him that he had to stay at my side at all times as well, and he comprehended both points, and promised to comply. I’ve worked diligently with the assistance of a BCBA to get Justin to the point where he can attend an entire film, so I felt confident we had a shot of pulling this off.
Plus, I took them to AMC’s showing of the “autism movie,” where almost any type of behavior goes. I was not taking any chances.
I have to share with all of you that they were excellent. Zach stayed glued to my side, and took it upon himself to hold Justin’s hand and guide him to the trifecta of tickets, bathroom, and popcorn acquisition. In perhaps a moment of divine intervention Justin’s BCBA who was working with another family happened to sit down behind us, so I felt covered. And last, by parceling out our popcorn supply I managed to satisfy both boys’ junk food requirements, and even got to sneak a few kernels when Justin wasn’t looking.
I’ll share with you that popcorn stealing from Justin is no mean feat.
We had a great time together, enough so that if I really get brave I can contemplate an afternoon at the boardwalk, or perhaps even a few hours at Great Adventure. I’m certain each time my heart will reside somewhere in my throat for the duration of the event, as with autism things are often unpredictable for my boys. No matter how old they become I may never entirely relinquish that feeling.
But today I’m going to banish those thoughts and just revel in our accomplishment.
I have to tell you that if two or three years ago someone had told me we’d be able to do this together I would have laughed, and suggested it might be possible once Zachary could drive. I remind myself as I embrace this new and welcome change that I must keep myself open to their recent forays into independence, help shape them so that more and more things are possible for this family.
As we exit the theater I look down at my smallest son and smile, and ask him if he liked the film. He replies in the affirmative, and states he’s having the best day ever, a sentiment I hope he retains when I ask him later to clean his room. Justin is “eeeing” rather quietly next to me, rocking slightly on the balls of his feet as we make our way to the car, a slight grin emanating from his face. My boys are happy. I have to remember they’ve matured, that it’s okay to take chances now and again.
And as always, I have to nurture hope.
April 3, 2014
Today, as with every day, my heart is bursting with pride for my eldest son Justin, who has severe autism. This week his private autism school hosted a news conference on the eve of World Autism Awareness Day, an event held by Congressman Chris Smith, co-chair of the House Autism Caucus, and Autism New Jersey. As with any news conference there is usually a photo opp, and my son was selected to be the “face of autism” that day (the link is below.) There are two beautiful pictures, a close-up of him apparently contemplating very deep thoughts, and a precious one of him working with his talented and adored teacher.
The accompanying article highlights the high rate of autism in my home state, which is 1 in 45 children in New Jersey, the highest rate in the country. It outlines the work my friends Bobbie and Billy Gallagher did almost two decades ago to bring the rising prevalence of autism in the Garden State to Representative Smith’s attention, an act which contributed to bringing about Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000 (the first comprehensive federal program centered around autism.) I am so proud of the Gallaghers for being pioneers well before autism was a household word, and thrilled that my son’s school was given the honor of hosting the conference.
But as I mentioned before, my heart sings for my son.
Of course it’s fun that his handsome countenance was featured in the Asbury Park Press, the paper of my childhood. I admit, it was a thrill to see him both online (and imagine this) in hard print as well. Quite frankly a few tears were shed yesterday, from both me and my husband too.
But I’m writing about this today not to brag about my son getting media time (okay, maybe it’s a little bit about that.)
I’m writing to you today about hope, and perserverance and love, and never giving up the fight to carve out the best life possible for him, the one he was born to lead.
Ten years ago my son was diagnosed with severe autism. He could barely tolerate anyone in his home, was phobic of strangers, had severe difficulties pairing with therapists, and clung desperately to his parents.
Two days ago he noticed the photographers, acknowledged them briefly, and went about his business of school with a smile.
Ten years ago my son screamed and sobbed whenever anyone tried to work with him, no matter how desirable the reinforcers being offered to him.
Two days ago he worked diligently (and most importantly, joyfully) with his teacher for his coveted bagel chips, but mostly for the love of learning.
Ten years ago we watched as his first birthday came and went, and so did the few vowels and consonants we held so dear.
Two days ago he used an iPad to communicate his wants, and is even beginning to fashion words for us, including two-word sentences which seem like miracles.
Ten years ago I thought I’d never see him smile.
Today, and every day for the past few years, I am witness to the unearthing of his ebullient soul.
Yesterday I cleaned out our local 7-11 of every Asbury Park Press they had (we have a lot of relatives,) and I am certain the photo of my son’s slight smile will make it into his scrapbook. There were phone calls to grandparents, emails to friends, and of course the obligatory status update on Facebook.
As I mentioned before, I’m a proud momma of an autistic child.
But the beautiful part of all this is sometimes I need a not-so-gentle reminder to celebrate how far we’ve come, how our family was forged in fire, and now revels predominantly in peace. My son is happy. He loves his life.
My son with severe autism loves his life.
And nothing in the world could make me more proud.
April 2, 2014
Today is April 2nd, otherwise known as the seventh World Autism Awareness Day. There will be people “lighting it up blue,” people boycotting Autism Speaks by not “lighting it up blue,” and many beautifully crafted posts on blogs and websites talking about autism, autism awareness, and yes, autism celebration.
In my house, at least in the early hours of the morning with my two autistic boys, it will be Wednesday.
Eventually, my sons’ buses will come to carry them away to their beloved schools and I will have time to consume my own beloved Coke 90 and sugar-free chocolate (I know, but every little bit helps, right?). I will have a few minutes to contemplate what I like to call the “state of autism affairs” worldwide, and equally importantly, the “state of autism affairs” in my own home, and what I’ll be writing about. In truth, every year I like to have a theme for my posts in April. Last year I celebrated by writing about exceptional autism advocates in my community. This year, as I approach the ten year anniversary of my eldest son’s diagnosis, I’d like to take a different approach.
I’m going to celebrate the hell out of my kids’ accomplishments. And in doing so, I hope to inspire and offer hope to anyone just coming to terms with their child’s autism spectrum diagnosis.
Ten years ago this fall a kindly developmental pediatrician gave Justin the diagnosis of Pervasive Developmental Disorder (PDD), a label I knew in my soul was just the precursor to the autism diagnosis I was sure would come. Four years later I sat in my living room as my Early Intervention provider told me my youngest son Zachary, following a series of back-to-back illnesses, had lost six months to a year in all areas of developmental growth in a matter of weeks.
The latter reckoning was particularly difficult to deal with as Zach had appeared to develop typically for eighteen months, plus Justin was going through a particularly challenging time as well. I well remember sitting on my couch in my living room, wondering how the hell I was going to continue a hellish attempt at potty training my eldest child while simultaneously trying to help my youngest retrieve the glorious words he’d lost, not to mention what appeared to be the very light in his soul. I recall thinking it was all too much, that my dream of how my family would be was irrevocably shattered.
The dream, by the way, was simply that my boys would be safe, productive, and happy.
On this blog I will never promise anyone their lives and those of their autistic children will definitely get better, as I don’t know all of my readers’ particular situations, and honestly, better is a relative term.
I will say this however.
I have two children with autism. One is severely affected, and will require life-time care. One is considered on the milder end of the spectrum, and one day may well be president. In their early years both suffered, truly suffered from autism.
Now, for the most part, I can honestly say they don’t.
We still go through difficult periods with each child. At times Justin can be caught in a vicious OCD cycle, difficult to reach, almost impossible to placate. His long-buried aggressive tendencies can rear their ugly head despite the behavioral techniques we try, rendering our family life challenging at best. Zach goes through periods where he truly struggles to focus both in school and out, and his impulsivity can stretch us thin. I’m not saying it’s a walk in the park here by any means.
Again, I will never promise any of my readers things will get better, although I fervently hope all families can reach the sanctuary of acceptance, and yes, at times celebration, that this family has.
But truly, after years of therapy, acceptance, maturation, and simply love, both of my boys are predominantly happy. Both thrive even working through, and sometimes because of, the lens of their respective diagnoses.
Both, in their own respective ways, tell me frequently that they love their lives.
And to me my friends, that is everything.
March 24, 2014
A few months ago I had the opportunity to attend Autism New Jersey’s annual conference in Atlantic City (no, no time to gamble that day). I happened to choose some very good sessions at the event, and was fortunate enough to hear Tom Toronto of the Bergen County United Way speak about a special-needs housing project known as Airmount Woods.
The nine unit residence is the first in the state to be designed to exclusively house adults with autism, and came about as a collaboration between Ramsey Housing Inc., the Bergen County United Way, and the Madeline Corporation. Staff from New Horizons in Autism will be working there around the clock.
The residence has nine bedrooms, all of which open into a common area. Since it was developed with input from the parents of the prospective residents the facility even includes a sensory room, which serves both as an outlet for calming the residents when they need it, and also as a recreation area.
Mr. Toronto was kind enough to bring both the plans and pictures of the housing complex that day, and I have to say I was impressed both with the attractiveness of the facility and the many ways the builders had factored in the residents’ needs as they constructed it. It was beautiful, functional, and safe, and all involved parties are hoping to open several more facilities in north Jersey in the years to come.
Frankly, it looked like a slice of heaven.
There are many issues within the autism community which are controversial, and where our adult children should live after they complete their schooling is one of them. I have a number of friends with autistic children over the age of eighteen, and I’ve seen them handle the issue of housing in a myriad of ways. Some have opted for the group home route, although in New Jersey there is an extremely long wait for an opening, so that isn’t always an option for parents.
I’ve also seen some families where one parent quits their job and stays home to care for their child. Last, and infrequently, I’ve seen families who can afford in-home care for their child. All of these options are fraught with difficulty. Any parent who chooses the group home option has to hope that their child is treated with respect and dignity, and remains safe.
Relinquishing employment to stay home and care for a child means a loss of income and embracing the role of 24/7 caretaker for decades. Those families who opt for in-home care are at the mercy of their child’s caregivers, for if the caregivers are sick or injured parents may be unable to find a sitter for their twenty-seven-year-old child so they can go to work. Truly, there are no easy solutions for families whose children will never live independently.
Trust me, I think about this issue a lot. If there were an easy answer I would have discovered it when I should have been sleeping.
When I think about the ramifications autism has had on this family (and yes, I think about that a lot too,) where Justin will live as an adult is one I come back to time and time again. I admit that contemplating where my eldest child will reside conjures up conflicting emotions within me, and is a complicated subject.
Justin adores his house, his bedroom, and having access to the multitude of toys he’s played with almost his entire life. He loves to go out for an hour or so but then is eager to come back, content to idle away the hours within the confines of his beloved home. I’d have to say if I chose to label him he’d be a homebody, might be perfectly happy living with us forever.
Of course the fact that his parents will die eventually is a slight wrinkle in that plan.
When I embarked on this parenthood journey I never anticipated I’d be responsible for one of my progeny for about fifty years (if I’m lucky, I was one of those people who had kids late.) I’m fairly certain there will come a time when the only people I’ll want to care for are me and my husband, and I’m sure there will come a time when that will prove impossible as well. My youngest loves his brother to death, but I’ve seen the restrictions imposed on this family due to the severity of Justin’s autism, and I don’t want those limits imposed on Justin’s little brother.
The truth is on any given day the thought of what happens to Justin when I’m dead or no longer able to care for him (or both) is overwhelming, a thought I’ve had to shelve as I deal with more immediate concerns. Fortunately he’s not quite eleven yet and won’t graduate from high school for ten more years, so even in my complex “perseverationland,” I still have some time.
I have to say however that when I hear about places like Airmount Woods I feel a surge of hope, both for Justin and for our family, that a significant piece of the “post-21 abyss” might have a happy ending. I hope that with society’s increased awareness and acceptance of autism that my son will eventually find a safe haven, will be respected and treated with the dignity he deserves.
That’s my dream for him. And I won’t give up until it becomes true.
March 21, 2014
When my eldest, severely autistic son was little our daily interactions were punctuated by frequent tantrums, an outcome I eventually learned was due mostly to his inability to articulate even his most basic needs. Halfway into his second year his father and I realized Justin was more than just a “late talker,” and after his autism diagnosis we dedicated ourselves to finding a method of communication for our boy.
We tried sign language, PECS (Picture Exchange Communication System), and ProloquotoGo for his iPad, and never gave up hope for the mecca of the spoken word. There were still tantrums of course (he’s a child, and strong-willed at that,) but they lessoned in frequency and severity with each system of communication we tried. To date, he is usually able to articulate his desires thanks to his iPad and to the limited vocabulary we’re so thrilled he continues to build upon.
We are so fortunate that through Justin’s school system and our insurance company we’ve been able to provide him with the training and devices he needs, as well as the training his non-techie mother required as well. There are autism families not as fortunate as ours. I cannot even imagine not being able to facilitate my son’s burgeoning independence as he shares his wants and needs with the world.
Apparently, the Sevenly Corporation, a company who on a weekly basis donates a portion of every product sold to a chosen charity, feels exactly the same way.
Sevenly contributes to a variety of different charities through marketing their unique one-of-a-kind products. For every t-shirt sold, that week’s non-profit organization receives $7. The company also uses social media to raise awareness for its partner non-profits.
Since 2012, when Sevenly began its partnership with Autism Speaks, the company has donated over $300,000 to the non-profit’s speech and communication programs. Sevenly’s goal is to raise $20,000 per month through their product, a t-shirt collection whose logos are inspired by the courage, determination, and talent of autistic individuals. Sevenly’s dream is to continue to use this forum to act as a positive impact on both families and individuals living with autism.
That’s a dream I can respect.
As many of you reading this piece already know, April is Autism Awareness month. I prefer to view this thirty day period each year as autism acceptance month, and autism celebration month as well. I had the chance to read some of their t-shirt’s inspiring slogans, including my favorite, “different not less,” and will be ordering that particular sentiment myself as we finally (!) march into spring. If any of you are so inclined as to acquire “autism merch” I recommend checking out the site, and I’ve included a link below. I know many families will directly benefit from your purchase.
And on behalf of my son, who continues to inspire and amaze us daily, I thank you as well.
March 17, 2014
I hear Justin’s yellow chariot about a block before it reaches my driveway, and make a mental note to tell his bus driver to check the brakes. It’s freezing outside (as usual this winter), so I wrap my warm woolen scarf tightly around my neck before I shove Cosmo into my coat pocket and step out of the warm cocoon of my car. I navigate pockets of the relentless ice plaguing my driveway and follow the carefully carved path my husband has created for us, and I hear my son well before the bus stops.
Within moments he is greeting me at the top of the steps with his aide close behind. As usual I thank his chauffeurs and make room for him to descend, grabbing his backpack as he moves from towering over me to mere inches from my diminutive height. I smile and say “Hi Justin” as I have done for years, but with perhaps more emphasis as I am trying to generalize a reciprocal greeting his speech therapist is attempting to teach him at school.
I anticipate a sofly emitted “hi” or a mad dash for the door for his coveted soft pretzel, but today is different. Today my severely autistic son looks me straight in the eye, and with a hint of a smile says “Hi Mommy,” then grabs my scarf and leans in to plant a big kiss right on my lips. It is the first time he has ever put two words together for me with or without being prompted.
Too soon the moment is over, then there’s still the mad dash for those carbs. He is so my child.
We’re starting to elicit a few words from Justin after ten long years of speech therapy, ABA rewards, and my working with him whenever possible. Over the last few months we’ve begun to hear coveted consonants such as “t” and “p,” sounds initially evoked only within the confines of his school or therapist’s home, now reproduced on demand for me. We’re slowly building a vocabulary me and my boy, one which even includes saying “pop” as a fill-in from his favorite Eric Carle creation.
It is thrilling to hear these words and word approximations, and I know as soon as we’ve shed shoes and scarves I’ll yell our triumph to my husband upstairs, and run to the phone to call my mom. There will be an email chaser to his private speech therapist and to the school speech therapist who has been working so diligently on this skill, taking the time to film me greeting my son on his ipad, and carefully rewarding his attempts with my homemade chocolate chip cookies that defy my usual ineptness with all things kitchen-related.
In a few moments I’ll be besieged by requests for juice and snacks from both of my children, will find myself tripping over hats, coats and mittens as I navigate our narrow hallway. There will be the daily homework struggle/bribe with my youngest, voluminous paperwork from their respective schools to pore over, lunchboxes to unpack. In short, the McCafferty clan will soon be immersed in its daily organized chaos.
But I won’t allow it to happen before I take the time to savor this moment.
There have been some really difficult periods in this household. I have two boys with autism, and both have undergone months or even years where silence ruled our world, gastrointestinal distress claimed the day, and sleep was an unreachable luxury. We’ve also endured periods where my eldest expressed his emotions primarily through aggression, with medication, therapy, and love incapable of providing any respite.
In the past there have been weeks where I’ve been struggling to make it through the end of the hour, much less the day at hand. Throughout these challenging times I’ve generally been able to invoke my mantra of “This too shall pass,” one of my beloved grandma’s favorite maxims that for our lives at least, seems to hold true. Those four words have been the touchstone that have help me transcend our troubles, minister to my boys, trade frustration for an embrace.
I guess you could say those words are my personal hashtag.
We go through cycles of frustration here, but what I’m finally beginning to remember as we now rarely descend into darkness that for us, these difficulties always pass. Thankfully, the stomach issues which plagued both boys have all but disappeared. The all-elusive sleep I longed for both me and my sons almost always graces our presence nightly, bringing much-needed rest and respite from the day. Through a variety of strategies, and perhaps mostly maturity, my eldest son has learned to quell his frustrations, now resorts to his iPad or even a word or two to get his needs met.
And yes, despite years where all of our queries met our son with silence, we are finally being graced with the mecca of the spoken word.
I hear my youngest bellow for “juice!” and realize my moment for contemplation is now on hold, to be shelved and savored for later. Soon pretzels will be distributed, beverages will be poured, and the minutiae of a day away discussed. My eldest will escape upstairs to his coveted computer, and I’ll tussle with my youngest about exchanging jeans for his karate outfit. Our life, “normal” as we know it, will take over.
But I promise myself this before I am swept up. I have goals for my sons, some of which like speech have seemed impossible to achieve, unattainable brass rings. My boys constantly shatter my preconceptions of what they can achieve, resist any limitations I might unconsciously impose upon them. They will continue to learn. They will continue to grow. On their own paths and in their own time, progress will continue to be made.
And each and every time they achieve success, their momma must remember to savor the moment.
March 10, 2014
Zach walks slowly into his school’s gym, his Cub Scout Pinewood Derby car clutched firmly in his hand. We’ve arrived a bit early just in case there’s some irregularity with his roadster, and after all the effort he and my uncle have put into making it I’ll be damned if he’s not going to race today. We register, then walk over to the weighing station where a kindly man eventually deems his vehicle race-ready, and I breathe a sigh of relief.
Zach says goodbye to his creation, then turns to me and asks if his father and brother are coming. I look him in the eyes and tell him I’m not sure, but I hope so. He shrugs his shoulders as if he doesn’t care, then runs off to find his friends.
The truth is, I know he does care a great deal. My fingers are crossed that the rest of his family will be able to show.
Soon we are all standing for the Pledge of Alligiance, and I focus on the flag while continuing to swivel back toward the gymnasium’s doors. Zach’s den is called to the forefront as they are first to race, and I glance behind me one more time, seeing only empty space. I turn back and aim my camera at the top of the ramp (God forbid I should miss a photo opportunity), and just as the Cub Scout leader is finishing up the rules I feel a tug on my sleeve, feel warm breath at the nape of my neck.
Justin and my husband have made it with a minute to spare.
I quickly send Jeff up to let Zach know they’re here, which elicits a squeal of joy from my youngest son. I position Justin so he can see, and he sidles into me catty-corner, arms wrapped around my waist, eyes staring raptly at the cars waiting patiently at the top of the ramp. Seconds later the vehicles are released and I see my son’s name in first place, and an accompanying shout of “I won!” resounding throughout the room.
Zach goes on to take first place in his den (I am ridiculously proud) and after trophies and certificates are dispensed I receive my “victory hug,” after which I feel the insistent tug of Justin’s hand in mine. I look up at my husband as I transfer my son’s hand to his, and smile. Today, Zach won.
But the victory was Justin’s. As I hug Zach one last time and admire the trophy I am certain will be prominently placed in his room I think about what it means that his sibling was here to see his accomplishment today, and send silent thanks to the universe that we pulled this off.
It seems like only yesterday that taking Justin for a ride in a car was a struggle of Herculean proportions- hell, sometimes just taking him to a different room in our house could elicit a mind-blowing tantrum. Eventually outings became easier until about four years ago, when my eldest decided that very few places could actually hold his interest. Most of the time Justin is ready to leave within forty-five minutes of entering any locale, which is daunting to a family trying to do things together.
He’s not subtle, my son- Justin makes his wishes known by pulling us toward an exit, picking up his bag, or vocally complaining in a way in which words are not necessary. Holidays are challenging when we travel, as toys and DVDs my eldest finds fascinating at home seem to lose their allure in anyone else’s house.
Often Jeff and I are tag-teaming for the better part of two hours just so we can eat with everyone and allow Zach to spend time with his family, which we feel is important. Over time, and by incorporating strategies his teachers use at school, we’ve been able to convince him to stay at events a bit longer, but it’s always work.
This is one of the things I’ve found it the hardest to adjust to- that with Justin’s severe autism, things that are supposed to be fun are often hard work.
In just the last year since my boy hit double digits I have however seen such growth in him, witnessed a willingness to relinquish his immediate impulses and comply to our demands. Jeff and I thought long and hard about whether or not to bring him to derby day, trying to balance both boys’ needs by making the right decision.
The truth is even a year ago I wouldn’t even have contemplated it, would have told Zach he needed to be okay with just having his mommy there to witness his potential glory. As usual he would have accepted my pronouncement with grace, but I know he would have been disappointed, would have liked to have his whole family there to cheer him on.
And for once, he got his wish.
I’m so proud of both my boys, Zach for winning with grace and congratulating the other scouts, and Justin for tolerating an experience that in ABA terms was nothing near to reinforcing for him. I am again reminded that we’re now in a position to take more chances, to stretch Justin out of his comfort zone, to think in a more positive way about what this family can accomplish together.
It’s taken hard work, lots of repetition, and frankly, the simple fact of Justin’s maturation to pull this off. But we’re here, dwelling in this place of burgeoning possibility, with our limits being slowly shattered daily.
And thankfully, we’re here together.
March 6, 2014
It seemed so simple. A family of four sledding through snow, taking turns, waiting patiently for space to clear at the bottom of a big hill. An ordinary tableau, one unfolding on other snow-laden hills across New Jersey, delighted children and adults reveling in nature’s splendor. It seemed so simple.
But to our family, it wasn’t. To our family, this was huge.
We’ve weathered plenty of storms here in the garden state, have been able to get Justin outside on occasion, even convinced him making a snow man would be fun. However in the past decade I had yet to be successful in getting my boy on a sled, that staple of childhood many of us enjoyed and anticipated with great glee. For years, I couldn’t even get my eldest to wear the requisite snow pants. Sometimes, he didn’t like the feel of the boots. There was also the shunning of the gloves, the hat, and the refusal to get into the car in all his finerie. Despite his love of anything that moves, my boy was having nothing to do with a piece of plastic that slid down a hill.
Justin was an absolute trooper. He trudged quite a distance from the car to where a bevy of families gathered, never complaining once. He kept his gloves on while I encouraged him to hold on tight, and conquered his mountain not once, but twice, with the hint of a grin playing on his face during both trips.
At the conclusion of his last venture I asked him if he wanted more, and his response was an emphatic headshake “no”, which I honored with a return to our still-warm vehicle. We left Zachary to the splendor of snow with his father, trudging heavily up the slope to the parking lot, with at least his mother feeling victorious.
We tried something new. My eldest son liked it. And I would have thought this entire endeavor complete folly even a year or two ago.
I’m not one for New Year’s Resolutions as I generally break mine about six days in, but the one I’m about to propose I heartily embrace. I need to remember to always stretch my boy, because he often surprises me. I don’t want him to miss a thing. And today, he didn’t. Today, our little family of four simply had fun, no drama involved.
And for that, I am grateful.
February 24, 2014
This past Saturday evening I had the luxury of having a girls’ night out with a dear friend at the annual Parents of Autistic Children (POAC) gala, a celebration of fifteen years of their service to the New Jersey autism community. I was deliriously happy to get out of my house (this winter has taken its toll in more ways than one, ask my poor scale), and an event with parents of children with autism as well as autistic adults themselves was something I’d eagerly been looking forward to for weeks.
In addition to good music, good food (a pasta appetizer bar!) and even greater company I always seem to come away from this evening reenergized, more able to focus not only on the issues my two children on the autism spectrum are experiencing, but on their accomplishments as well. And in addition to eating and dancing the night away, everyone in attendance spends a good part of the night bragging about their kids’ successes to people who “get it.”
Frankly, it’s a fabulous perk of the night, right up there with those addictive chocolate-covered strawberries Eagle Ridge always serves at the end.
As my friend Babette and I settled into our table I prepared myself for POAC Executive Director Gary Weitzen’s annual speech (he never fails to make me cry at least once), searching through my night purse for a pen to take notes as my memory (and many other things) aren’t what they used to be. As usual, with his words I was rewarded. Gary did a wonderful job outlining the myriad ways in which POAC, which is the largest provider of free autism training and education in the entire state for both teachers and law enforcement officials, also provides a myriad of free recreational events for families.
He also recounted a moving anecdote about his wonderful adult son Chris, regaling us with his desire to hear his then four-year-old child speak just one single word, a wish thankfully granted. Gary went on to inform us that for the past decade-and-a-half POAC had been building a parachute for families, and that now their focus would also include job and residential opportunities autistic individuals over twenty-one. As always, POAC is always looking both to improve their services, and to plan for the future of our children.
I have no doubt they’ll come through for all of us.
The night’s speeches were capped off by a moving slide show featuring autistic children and their families at various events, as well as the volunteers who single-handedly make POAC such a successful autism organization. Traditionally this hails my second crying spectacle of the night, and for once in an effort to preserve my mascara I permitted myself to turn away and take a good look, a really good look, around the gorgeously decorated room.
As I scanned the tables I saw fierce and Congress-celebrated autism advocate Bobbie Gallagher rubbing the shoulder of her beautiful adult daughter Alanna, and couldn’t help but recall how she’d helped me when I first moved to our town, assisting me in navigating the special education component of our school district. I watched as Simone Tellini (Gary’s right hand at POAC) was held rapt by the power point, and thought of the struggles she’d shared with me about her adult son with autism, how she’d moved mountains for him during a time when nobody really knew much about the disorder or truly seemed to care.
As I shifted in my seat I felt behind me the presence of Geoff and Roe Dubrowsky, two advocates who have advised politicians and served on every local, state and federal committee known to man, who also have an adult child on the spectrum. I truly looked around the room at one hundred and fifty people in their finery, all here to support one another as well as the organization hosting them.
I entered that room and saw it mostly full of strangers. By the end of the presentation, I felt myself to be an integral part of a growing, vibrant, and incredibly committed community.
I’ve been a POAC member since shortly after I moved here in 2008, and I cannot emphasize enough how much this organization has meant to my family, and to countless others in the state. They are a well-spring of information, and provide those all-important recreational events for families in a safe environment, where no child or adult is ever judged. I am truly grateful to them for their continued support, and most importantly for the friendships I’ve made there, men and women whose acceptance, kindness, and humor have helped get this family through some dark times into the light.
It’s possible I appreciate their humor the most.
Whether you’ve had the “autism experience” for over a decade as I have, you have a child who’s newly diagnosed, or you’re simply looking for a wonderful place to volunteer, I can’t recommend POAC enough. I’ll list their contact information below, and I encourage you to reach out, whether it’s to gain help, or to offer yours. We are a community unto itself.
And if you’re seeking a community who cares, you’ve found your home.
Contact POAC at www.poac.net