March 31, 2017
This coming Sunday is the tenth official World Autism Awareness Day, a day in which I could tell you I’ll be “lighting it up blue” or spreading awareness, but in reality I will be severely jetlagged in Ireland and hopefully putting autism on a shelf for a week.
Really, I’ll still have fifty-one weeks and thirty more years to think about it.
In the past nine years I’ve written at least one missive about the day each year, discussing my eldest son’s burgeoning awareness of the world around him, and my youngest’s awareness that he has autism too. I’ve talked about our path from awareness to acceptance and even to celebration (yes, some of you are rolling your eyes, but reading at three and insane organizational skills are the yin to many a yang). I’ve written about how much Autism Speaks has helped us, and how passionately I feel about the boys’ collective progress.
When it comes to autism, there’s always a lot to write about.
When the boys were little, our world was very small. Truth be told I only worried about what was happening in their world, was truly just trying to get through the day, or sometimes the hour. There was no global autism awareness chez McCafferty.
But I’m happy to tell you now, with my kids at ages ten and almost fourteen respectively, there’s room for what I call the “big picture.” Here are some things I’m aware of this World Autism Day.
I’m aware that my eldest, severely autistic and non-verbal son continues to make progress every month of his life, and his courage astounds me.
I’m aware that my youngest has exceeded my expectations in what I thought he’d achieve, that he is “living his dream” as he is fond of telling me.
I’m aware that some days at my house are so difficult they’d never make it on a reality show.
I’m aware that some of our moments are so filled with love and promise some people would not believe I have two autistic kids.
I’m still aware that Betsy Devos needs to brush up on IDEA.
I’m aware that the Supreme Court is my new best friend with their latest ruling on the court case which hopefully redefined a “fair and appropriate education” for generations to come.
I’m aware that I’m nowhere near as patient as I often need to be.
I’m aware that not beating myself up about it is key, and I’m trying my best not to do that.
I’m aware that I will never be at peace with leaving my son for half his life here without me.
I’m aware that my other son will most likely “flee the coop,” and for that I’m eternally grateful.
I’m aware that I need massive quantities of chocolate to get through my day.
I’m aware that sometimes wine is needed to accompany that chocolate too.
I’m aware that this life, both for me and my kids, is sometimes grueling, beautiful, stressful, fulfilling, annoying, and miraculous, all at the same time. I’m aware that autism is not completely gloom and doom, nor puppies and rainbows either.
I am aware of the patience and consistency and boundless love from several villages of people that go into raising my kids.
I am aware and am so grateful for everyone’s contributions, and for my kids, just as they are.
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April 2, 2016
Today is the tenth official World Autism Awareness Day, and as I watch my eldest son with severe autism rearrange his bucket of toys for the zillionth time I can assure you, I am very aware of autism.
The great thing is though, the rest of the world is now too.
In past years I’ve written about my youngest son’s burgeoning awareness to his own form of autism, and about moving from awareness to acceptance, and yes even to celebration of certain aspects of my boys’ disorders. I’ve also written about amazing advocates in our area, and talked about my own advocacy, and what it means to me to “light it up blue.” I’ve talked about how far the boys have come in the twelve years since my eldest was diagnosed with severe autism, discussed their progress as well as the fact that despite two autism diagnoses in our household, we do indeed have a happy family.
But I’ve never spoken about one entity that helped us get to that peaceful place. And that entity would be Autism Speaks.
Many years ago we were desperately searching for a practitioner who could help us with our eldest son’s aggression, and failing miserably in this endeavor. One day my mom came across an article about Autism Speaks’ ATN, or Autism Treatment Network, a program affiliated with CHOP (Children’s Hospital of Philadelphia) not far from where we live. Within minutes of meeting Dr. Amanda Bennett we knew we were home, and we’ve been using her services (and those of Lindsey Widmer) ever since. It was the first place we’d been to since our visit to Kennedy Krieger years ago where we felt our concerns were listened to, were validated, and where we actually walked out with a plan of what to do next for our boy.
Needless to say, our gratitude toward Autism Speaks began that day.
We were again beholden to the ATN a few years later when our youngest son decided sleep was for sissies, and we were able to engage the services of an ATN nurse, Margaret Souder, who made house calls (!) and helped us to get our boy’s sleep schedule back on track. We’ve followed her instructions for years, and now our boy gets ten hours of shut-eye about 85% of the time (yes, I’ve tracked it, I’m that A-type,) which has benefitted both him and the rest of his family greatly.
His momma needs her shut-eye too.
Autism Speaks has helped us financially too. Their initiative to mandate that insurance companies must cover autism therapies like ABA helped us when we relocated to New Jersey from Virginia. During Justin’s early years we had spent thousands of dollars on his in-home program because Virginia only offered us six hours of occupational therapy and two hours of speech a month, all with more than a year to go before Justin would be eligible for a school program. We were on the hook for all of his ABA services, most of which I delivered myself so we wouldn’t go bankrupt. Since we moved up north all of his therapies have been either fully or partially covered, a fact for which we are grateful too.
Autism is expensive. Having coverage for necessary therapies is invaluable.
And last, but definitely not least, Autism Speaks is a large part of a movement that has made autism a household word, which has opened worlds of awareness and acceptance, has made navigating the often difficult waters of autism easier for this family. I saw the tide start to change ten years ago when I began talking about our son’s diagnosis, saw without fail the compassion and understanding in people’s eyes when I sometimes had to explain our boy’s behavior in public. I am certain some of that comprehension came from Autism Speak’s global approach.
So today, as I make sure my blue porchlight is still working, I just want to take a moment to say thanks to Autism Speaks for all they’ve done for my boys. We have our struggles here still, and I anticipate we always will. But in general my two sons are safe, happy, and productive, three things I made a priority for them before they were even born. I am grateful to Autism Speaks for helping this family get to a place of peace.
And my wish for you is that you get there too.
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April 2, 2015
Today is World Autism Awareness Day, and this is the time of year I tend to take stock of the McCafferty clan, and also look back on past years to see what I’ve written about. In former years I’ve penned blogs about amazing autism advocates in our community, written about my eldest son’s burgeoning awareness in the world, and about moving from awareness to acceptance. Yet I realized as I look back at the last few years I’ve neglected someone.
My littlest love, to be exact.
Second grade has been a pivotal year for Zach, one in which he has become more aware both of autism’s limitations and its gifts. This year he has stood up for himself and staunchly denied that autism is a “boo-boo on the brain” to a fellow sibling autism support group friend. He has used autism as an excuse to get out of homework (he was denied.) He has also made the connection that he is a great reader most likely due to autism, specifically the hyperlexia we believe he has, that enabled him to start reading at the tender age of three.
As with everything in life, there’s the yin, and there’s the yang.
We told Zach he had a little autism (compared to his older brother who has a lot) over a year ago, and for months afterwards I expected to have more dialogue with him about it. The truth is he’s only just begun asking questions about his life, which I won’t share here.
But it is abundantly clear that he is aware of his autism, and his differences.
I agonized over whether or not it was the right time to tell him a little over a year ago. But divulging my son’s disorder to him occurred when he asked me if he had autism too, and it seemed the perfect moment to discuss it. At the time we talked about the challenges and “bonuses” autism brought to him; the former of which makes it difficult to focus sometimes, the latter of which I believe has gifted him both with a superb memory for facts and of course his amazing reading abilities. Later that night he hugged and kissed me and went to sleep, business as usual, no more conversation required.
So far, he seems at peace with his diagnosis. My son is proud of who he is. And for his awareness, and most importantly, his acceptance, I am eternally grateful.
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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.
April 1, 2012
“Mommy, can you have a little autism?” my youngest son asks, all while sitting at our kitchen table twirling a giant plastic T-Rex around by its tail, a toy I am certain will soon end up landing on my face. I think quickly about how I want to respond to this, and I say “Sure honey, some people with autism can talk just like you do”, because the issue Zach keeps coming back to over and over is ‘will Justin ever talk’. Apparently this satisfies my boy, because he forgets I’ve just asked him not to fling that huge, disturbingly life-like creature in my general direction. This time, however, the outcome for his “pet” is not so wonderful.
Clearly, just like in the Jurassic Period, tyrannosaurus rex still can’t fly.
After I’ve rescued his friend from the floor (and applied no less than two Elmo band-aids to his “wounds”), Zach gets down from his seat, and decides to build a fort for his dinosaur family in the living room. I begin washing up the detritus of ham and gluten-free/dairy-free oreos, and as so often happens, my mind begins to wander (so far, it’s always returned). As soapy suds wash away the evidence of a meal consumed, I think about how far Zach has come in his own understanding of autism.
Initially, our inquiries as to what he thought about it were met with complete silence. Now, he talks about it all the time, from discussing Justin’s actions with replaying the same scene over and over on his DVD (“that’s the autism, mom”), to the fact that he said “thank you” to Zachary the other day on his iPad (“Justin DOES talk!”). My boy is truly aware of autism in his smaller world, and within the larger confines of the world around us.
And as I look around, at least within the community in which we live, everybody else seems to be aware as well.
I have to say however that most of what I see around us transcends awareness, has in fact moved past even simple “tolerance”, has even begun to dabble in the waters of true acceptance. I see evidence of this evolution at the movie theater, where a mom with six young girls in tow graciously let me jump ahead of her in the popcorn line, because she could see how anxious Justin was for his carb fix. I witness this acceptance in the children of my neighbors, all of whom always emit a warm greeting for my eldest son, and some of whom continue to ask if he’d like to shoot a basket with them (Justin will eternally decline).
I’ve had a broad view of our little corner of the world’s take on autism as I’ve handed out fliers for my play, with every single store-owner registering only kindness as I’ve described my family, and explained my desire to support POAC Autism Services with my writing. Most importantly, I’ve registered this acceptance of Justin’s differences by his neurotypical peers, during our trips to stores, bowling alleys (he’s quite good now), and of course, his perennial favorite, our local boardwalk. I will admit, sometimes his loud vocalizations and somewhat staggered gait are met with averted eyes. More often than not however, he receives a genuine smile, one which usually is shared with me as well. Sometimes, I even get a heartfelt teen-age comment of “he’s so cute!”.
Which of course, he is.
I feel the world has evolved so much since the dark days of Justin’s diagnosis almost eight years ago, yet of course, we have new roads to forge, more prejudices to destroy. What I continue to see however, the critical point that stirs up so much hope for me, is the constant commitment by those in the autism community to put aside our differences, and instead do our part in raising awareness about our incredible kids. From requests on Facebook to look past our conflicts, to illuminating our homes in blue for the fifth World Autism Awareness Day on April 2nd, to fighting and demanding legislation be put through for the next generation, I see everyone doing their part. And I watch gratefully as our community conducts these actions in far more harmony than I’ve ever witnessed before.
Finally, most importantly perhaps, I see so many people not directly touched by autism trying to lift our lives just a little bit, and do their part by displaying compassion, not condescension.
April is Autism Awareness Month. My husband and I will be turning our porchlight blue, in honor of the commemorated day, the month, and of course, our beautiful and unique children. Acquiring a light bulb sporting a filament that will bathe our home in blue is an easy act, a quick trip to Walmart or Target, a simple twist of a wrist to install. If you’d like to show your support, it’s a wonderful way to let our community know that you care.
And of course, where my kids are concerned, I’ll always gladly accept those smiles too.
As always, thank you for your support!
April 6, 2011
“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 four 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 enveloped 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, 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 impulsivities 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 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 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.
POAC walk-a-thons 2011
April 5, 2011
Where to begin?
First, I would like to thank Laura Apel, and the editors at Exceptional Parent magazine, for giving an unpublished housewife her first break in the April edition of their online publication. In case you don’t subscribe, you can see my little name and a blurb about the piece right here. Thank you EP!
I would be remiss in today’s Gratitude Attitude if I didn’t thank everyone who contributed both financially and by their presence to POAC’s first 2011 walk-a-thon this past Saturday, April 2nd, on World Autism Awareness Day. It was a tremendous thing to watch thousands of people stroll around a stadium in hopes for a better future for their children. Thank you (and special thanks to my Mom for helping out)!
Last, but not least, to all who are turning their porch lights blue this month, my gratitude. Anything (legal) done to enhance awareness of autism is wonderful in my book. Many thanks!