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.
February 20, 2013
Downton Abbey Dreams
I’ve recently become a Downton Abbey devotee, am finding this epic saga about the English aristocracy and those who serve them to be absolutely riveting. A good friend of mine convinced me to watch it, knowing that even though I’m more a fan of shows with medieval settings (The Borgias), or serial killers (Dexter), that I would love it as much as she does.
She was right, and whenever I have the time to sneak in an hour of the trials and tribulations of this British family and their staff I claim the couch and remote, and indulge. I’m only halfway through season two (I’m told someone pivotal dies soon, please don’t ruin it for me), but I’m already quite attached to the characters, either rooting for their choices, or alternately (and sometimes simultaneously) appalled by some of their comments.
The story takes place almost a hundred years ago, and as I watch the episodes I’ve had time to think about how much things have changed since the early nineteen hundreds. Women in the UK are no longer struggling to attain the right to vote. Having babies, (or even sex) out-of-wedlock, will no longer (in most instances) get a woman shunned from the world.
I’ve read that being a member of the English peerage is no longer what it used to be, that class lines in England have been blurred and crossed to a considerable degree since we said goodbye to the twentieth century. I can’t see these transitions as anything but a positive outcome of activism, being that I’m a firm believer that we should be judged on our own merits, not on our ancestors’ bloodlines.
I believe most of the characters at Downton Abbey would have my head for that (some of the downstairs staff included).
As I wrapped up a particularly riveting episode last evening (will Matthew make it back from France? Does Sybil find forbidden love with the chauffeur?), I couldn’t help but feel slightly frustrated with certain characters, caught myself judging their narrow-mindedness without considering the weight of societal approval back then. I had to constantly remind myself what being “shunned” meant socially, economically, and emotionally for those who strayed from their appointed class lines, as well as what it meant for those who parted from society’s rigorous moral code.
Still, I longed to reach through my flat screen (if you’re reading this husband, don’t worry, I won’t), and shake those actors at times. I wanted to implore the staff of Downton Abbey not to judge Mr. Bates on his physical imperfections, but instead on the contents of his generous heart. I felt like informing the Dowager Countess that she should just get over herself, and celebrate the fact that her granddaughter might be in love, even if it is with the help. I desired to remind the second Grantham daughter, Lady Edith, that the large stain on her dress at dinner was not nearly as important as the fact that their family’s trusted butler might be dying right in front of her.
I found that last scene particularly galling, but that’s just me.
As I turned off the DVD player last night, remembering how to return to regular cable and being inordinately proud of myself, I found myself wondering what the next hundred years would bring for all of us, particularly those considered “disabled”, either physically, mentally, or emotionally.
For one thing, I hope this century sees the end of the word itself, with the word “differently-abled” being used to replace one that sets limits and defines a person, rather than one which focuses on their strengths and the beauty of their differences. Truly, eradicating this word is more important than you might think, because it sets the stage for how a person is viewed, immediately putting them at a disadvantage.
Along with “retarded”, I’d be happy to see that one go.
I’ve been fortunate enough to live through almost a half century (!) of progress for African-Americans, women, and the gay community, among many others. I’ve read, heard, and spoken to people whose views have changed regarding each one of these groups, and it’s been so heartening to witness not only their acceptance of those who are different from them, but their ability to embrace those differences. I have hope this acceptance will extend to my sons.
It is my greatest wish that my children and their peers will one day live in a world where their differences are respected, not overlooked, but instead celebrated. I hope this will transpire during my hundred years (people in my family live insanely long lives, so there’s hope). Perhaps, if I am incredibly lucky, I will one day look back at the long arm of a century lived and recall with incredulity that people once dismissed those who didn’t conform to a picture of “perfect”, and reflect upon how antiquated those opinions were.
Perhaps I will get the opportunity to smile at their folly, and wrap myself in the certainty that indeed, times have changed, people have changed. I dream that one day I will inhabit a world that has been made a better, more welcoming place for my sons, and all who walk the path of “difference” with them. I dream they will be happy, productive, and respected.
And I hope, along with rooting for Sybil and her outrageous love, that this is one dream that actually comes true.
February 15, 2013
Happy Birthday to Me
My youngest son turned six this week, and amidst his numerous celebrations (his mother’s birthday still lasts a month, he deserves the same), I’ve caught myself marveling over the fact that my last child is a third of the way “cooked”. It sounds so cliché, but it really does seem like just yesterday that he made his early debut in an ice storm, and returned home to have his big brother greet him by attempting to shove a doll’s baby bottle in his mouth.
So much for autistic kids not imitating.
He’s come so far my little one, particularly since those dark days when Zach stopped speaking, looking at us, or relating to anyone he loved in any discernible fashion. He has made particular progress in the last year of his life, learning to control his impulses (most of the time), acquiring difficult lessons like losing sucks but it happens, homework is a necessary evil, and his computer access will never be “on demand”. He works hard, my boy, and with his posse of teachers, therapists, family members and several meticulously constructed behavior plans, most of the time he is a delight.
He’s only six, so “most of the time” is pretty good.
I was witness to how much he’d grown at his kids’ birthday party Sunday, when the streets of House of Bounce got a little rough for him, and he chose to remove himself a few times from the oh-so-typical fray. After a minute or two of sulking on the floor while his mother tried to quell her inner helicopter, he eventually returned happily to the melee, mostly of his own volition. A year ago, in the same situation he would have spent his birthday party huddled in a corner, head down and arms akimbo, and he would have been out for the count.
Instead, on no less than three separate occasions he employed his powers of self-regulation, and at its finale declared this year’s bash as the “best party EVER”. In theory this should be the conclusion of this post, with perhaps a mention of how he actually thanked a few of his friends without prompting, and that his mother didn’t devour four pieces of cake (even though she wanted to). After all, it was his birthday, and the story should end here.
And it would, except for the fact that his big brother stole the show.
I’ve written about the boys’ relationship before in this blog, explained how they get along pretty well but generally don’t interact with each other all that much. In an attempt to remedy this my husband and I have attempted to contrive opportunities for interaction between the two, opportunities which usually didn’t end well. Our boys’ interests are quite different, and we’ve learned to respect that fact.
On occasion we have seen some “cross-over”, as when Justin moves over an eighth of an inch to allow Zach a visual on his DVD player, or the one time Justin wanted to play a board game with the entire family (I wanted a parade). Often the boys simply orbit one another, taking a momentary interest in each other’s path, co-existing in peace.
There are definite benefits to siblings with dissimilar interests. It’s the severe autism bonus.
So yesterday, as that “inner helicopter” whirred frantically each time my boy’s angst seemed like it could only end in irreparable meltdown, I’m not certain I fully registered what transpired right under my nose. I know on some level I noticed Justin’s arrival every time Zach got upset, but was too engaged in the drama at hand to fully acknowledge the import of his presence.
In general my eldest son’s repertoire for bouncy houses is to take a few minutes to test out the goods, then spend the rest of his time walking back and forth the length of the establishment, perhaps rocking out to the piped-in tunes. He’s never interacted with Zach at any of these establishments (believe me, we’ve tried), so we pretty much let him do his own thing.
If he’s happy, we’re all happy.
Yesterday, however, was different. This past Sunday, as I desperately summoned my “mommy tricks” so that Zach would participate in his own damn birthday party, Justin came to my aide. Each and every time that Zach sought solitude my eldest responded with the solace of his presence, not too close, but just close enough. I know his actions offered comfort, even though Justin never said “I’m sorry, Zach”, or “let’s try something else”, or “it’s your birthday, come on!”. He never spoke a word of course, because he can’t.
But the truth is, he didn’t have to. He stayed each time Zach succumbed to the throes of despair, and left each time his little brother bounded up to try again. There was no other moment during the party in which they interacted, no point at which their separate interests overlapped. Justin saw that Zach was in pain, and simply came to help.
For once, Zach’s big brother was his champion.
Later, when his harried mother had time to process it all (and made sure she didn’t imagine it), I had to marvel in the sensitivity, the empathy so abundant in this child who communicates through an electronic device. Justin saw that his sibling was sad, and wanted to make him smile. Despite a dearth of words, he wanted Zach to know he loves him.
And for both my youngest and myself, this may be the best birthday gift ever.
February 8, 2013
Angry Birds Palooza
“Come on Mom!” my youngest son implores me as he hustles down the long aisle at church, eager to sit with all the other kids. Zach enjoys the mini-sermons imparted to the children before they’re dismissed to the annex for Sunday school, likes to be in the thick of things so he doesn’t miss a word. I started taking him this past September, and so far he loves the games played in church school, the stories told of ancient times and people, the lessons learned.
I’ve chosen to involve him in every aspect of the service, which requires about a twenty minute wait with me in a pew before his presence is required up front, and some days are better than others. I have a behavior plan in place (when don’t I), and most of the time we pull off this little interlude. Today he is particularly attentive, follows along with the words of the appointed hymn with interest, and I relax a bit.
When the children are called up I am unceremoniously dismissed as he makes a play for the best seat in the house (which is next to the Reverend, front and center), and settles in amongst the forty or so other children who attend. I take my place with the other moms and dads on the sidelines, as I do every week. I make a silent plea to the forces of the universe that he’ll restrict his comments to a minimum, a task he’s been able to accomplish to date.
Every week there’s been a well-timed response to a query from our minister that has left a congregation of almost three hundred in stiches, but so far, his behavior has been under control. I silently hope for the same today, then see our leader bring out an iPad from under his voluminous cloak, and announce that today he’ll be speaking about Angry Birds.
The words “it’s showtime” come unbidden to my suddenly alerted brain.
I watch as my boy’s body literally vibrates with excitement, and before our minister gets a chance to speak he’s up, waving an eager hand in his face, positively buoyant with the knowledge I know he is about to share. You see, my son is an Angry Birds aficionado.
I have no doubt in my mind the several hundred people gathered here today are going to learn more about these rage-filled mammals in the next five minutes than they ever wanted to know.
His first three comments are met with laughter, are both informative and brief in nature, non-disruptive in their execution and intent. Since we’re a Star Wars family I will the force to get him to sit down and listen, because there is no way I can skirt all those little feet and hands to quiet him, nor do I feel it’s my place to do so.
Zach’s made it through for four consecutive months now. I keep my fingers crossed that he’ll follow tradition just as he stands up for the fourth time to deliver an oration on the merits of conquering level two of Angry Birds over level one, a comment met this time with dead silence. My stomach clenches a bit as I will the pre-sermon to wrap up.
It does. I have renewed faith in the force.
Soon the children are dismissed, and Zach bounds over to me and literally wraps his entire body around my lower half, blocking the exit completely. “He talked about Angry Birds Mommy!” he cries, and I have to smile at him as we shuffle forward, as I gently try to disengage my body without ending the conversation. “I know hon, I know” I reply.
When we exit the narthex I take his hand and talk to him about taking turns, not shoving hands in people’s faces when he wants to share, remind him of the stickers and Darth Maul light saber he’s trying to earn. I can tell it all washes over him at this moment, that he is too ebullient over the communion of church and his favorite video game to remember the rules. I let it go as I release his hand at the front door of his brightly colored classroom, and walk back to my seat in a far more silent pew.
I pop a sugar-free Jolly Rancher on the way. I strongly feel that Mommy deserves a reward at this moment.
It’s a brief trip back to church, but I use the time to ponder what I’m feeling before I sit and surrender to today’s grown-up sermon. I’m not embarrassed by Zach’s antics today, and it’s not because I’m so incredibly evolved. It’s really that for years I struggled in public with his older brother’s tantrums before he grew into his mostly compliant self, and frankly, I barely register other people’s praise, condemnation, or pity any longer.
During my most intense years with Justin I was usually just hoping to make it back to our car relatively unscathed- monitoring public opinion simply wasn’t a part of the process for me. Quite honestly it’s a joy not to care, and this ability has transferred to my second child’s behavior as well.
Plus, we’re in church. If there’s ever a place for kindness, it’s here.
No, what consumes me today is a quandary I encounter on a daily basis. Namely, how do I, his teachers, his karate instructors, his church educators, and his therapists shape his behavior without clipping his soul. We ask him to walk in our world every day, and I ponder as I often do how difficult this is for him at times, and how simple it is at others.
I know it’s important for him to be perceived as a “good boy”. I also know that while he stood up and imparted his knowledge today that the only person in the room for him at that moment was our minister. He was simply thrilled to share his fascination with his winged friends, and in those moments nobody else in that room existed.
As an often tired forty-five-year-old woman, I admit I admire his passion.
I make a mental note as I slide into my seat to send an email to our clergy. It will include an apology and a request for assistance, namely a body other than mine to reside next to Zach for the sermon “prequel”. Since he’s almost six, that body should belong to someone other than me. I know my query will be met with compassion and understanding, and will be granted quickly. My son will of course be allowed to continue to contribute, but his days of lengthy orations are concluded.
And as I prepare to sing our third hymn of the morning, I send out a silent plea to the forces that be that my youngest will always feel comfortable to share the light inside of him, and that those around him will always recognize his worth.
February 2, 2013
Bond of Brothers
“I wish Justin didn’t have autism.” I hear the words softly emitted from my youngest son’s mouth as we exit our church’s parking lot, and my stomach clenches mildly in response. I look in the rearview mirror at my son’s face, slightly obscured by a hat gone askew. We’d just been talking about Moses and the burning bush (I was so proud of myself for retaining at least one story from my own Sunday school days a century before), so his segueway was slightly startling. I took a deep breath, and asked him why he felt that way. He tilted his head a bit and said “Because then we’d like the same toys and movies and books. We could share and I’d have twice as much stuff.”
When you’re five, it’s all about the “stuff”.
I realize I’m holding my breath and I exhale, relieved that for now this wish is so simple, plus I won’t have to resent my husband for not being there to help me handle his query. I continue our drive, and for some reason a set of framed photos hanging in our foyer come to mind. The pictures comprise a triptych, where Zach is static for all three shots. Justin is in various states of watching his brother, then alternately looking at me. Last, in that perfectly captured final moment, he is actually nuzzling his younger sibling, eyes closed, apparently reveling in their closeness.
I’ll admit, there was some eye-welling when I realized what I had “on film”.
Zach pulls out his favorite request after asking for juice and pretzels, and I am once again relegated to the role of storyteller, a part I feel is just a wee bit too early for me to handle in my unfortunately uncaffeinated morning. I gear up for the task at hand after I’m told the cast of characters (Zach, Justin, Mommy, Daddy, and everyone from Star Wars except Jar-Jar Binks). I take a moment to think about where I want to go with this latest piece of fiction.
I have the strong feeling it will involve two brothers.
It does, and as I weave a tale of wars waged and battles lost I include two boys, both of whom possess a formidable will for what’s right, and impeccable character as well. There are choices to be made, forks in the road that require a devotion to the dark side, or to the light. Fights ensue with limbs lost.
This is a story for an almost six-year-old after all.
But amongst the challenges accepted and the rallying cries of war there are pivotal moments of character development, where the two protagonists must work together to save their aging parents (guess who they are), are required to comprehend each other in order to return the universe to those who follow the light. I highlight Justin’s strengths, his ability to notice when anything is “different”, his devotion to getting to the heart of the matter when he communicates, his affectionate soul.
I insert Zach’s innate stubbornness and facility with language, and create a plot where they both must work together to liberate their parents and save the day. I make certain that in order for my two main characters to collaborate they must appreciate each other’s gifts, and supplement each other’s deficits. In the end of course they prevail, with a relieved mom and dad showering them with praise, and a grateful universe regaling them with precious treasures.
Among the gifts is a talking light saber. I have to hold his attention while I tether those sometimes tenuous brotherly bonds.
As my fable comes to its climax I am relieved from my storytelling, and my small son begs me to pull over so I can ply him once again with juice and snacks (listening to my tales appears to make him famished). I quietly ask him if it’s okay that Justin has autism, and after a few long moments I hear a faint and slightly irritated “yes”. My son has rediscovered his Star War books, and clearly discussing neurological disorders is so yesterday.
I grin at his intense concentration, that focus he brings to all he does. I send out a request to the universe that Zach will permanently view his brother the way Justin sees him in that well-regarded triptych, that my youngest son will continue to adore his older sibling. I hope that Zach will always see the light in Justin and in himself, that effervescent force which flows from them both.
I let my mind wander back to that final photo of brotherly love, and smile.
January 26, 2013
Say Uncle
Last week my boys and I had a rare visit from their Uncle Erik (my brother), who is usually either on tour or recording somebody in his studio, so doesn’t get to make as many visits home as he’d like. Although the boys talk on the phone to him (or in Justin’s case, listen), I’m always concerned that since they see him about once a year, they might not really remember him, or feel he merits their attention.
After last week, I’ll remove that worry from my list of perennial concerns for good.
My brother was gracious enough to come see Zach perform in karate class, in which he excelled so much with his punches and jabs I thought he’d send one of the instructors to the hospital. Zach kept looking through the window to make sure we were still there (we were), and absolutely ate up the fact that his uncle was watching him feint and par.
After putting him through several rigorous rounds of Star Wars fighting at home (guess who was Luke, and guess who won) we finally wore him out enough for bed, which became a family affair. At his final parting with my sibling I saw my youngest become emotional, and my heart lurched a bit at bedtime when I heard him whisper “no tears” to himself, in true Jedi warrior fashion. He has a full heart my little one, and he knows it will be a while before we further exhaust his uncle at Disney later this year.
It may take my brother that long to recover from all their light saber fights.
But I have to admit the true star of the evening bedtime ritual was Justin. My eldest, who for years pretty much ignored everyone not directly in his inner circle (mom, dad, teachers and cute therapists) has become more social, and fare more aware of things as of late. In the last two years of visits from Erik he always looks from his face to mine a half dozen times as if to say “I know you two are related”. Bedtime is usually a sacred ritual for Justin, one which generally involves only his mother and sometimes his father (if Justin’s in a magnanimous mood). But last week was different.
That evening, my mom, brother and I all sat in Justin’s room for my mother’s rendition of “Rainbow Sea”, the book of the week (well, really the year), and my son was beside himself with joy. I watched happily as my child, who in theory is supposed to have great difficulty with eye contact, stared gleefully at the members of his family as the story unfolded, absolutely rapturous that this generally private ritual was being shared. As the story concluded hugs were dispensed, adults were pushed to the door (take a hint people), and my beaming boy dove into his sleeping bag, thrilled to death with the attention.
And yes, he has severe autism.
I need to remember these moments, because if someone had told me years ago a visit from my sibling would unfurl in this manner, with both my boys delighted to see him, craving contact and attention from their fun uncle, I wouldn’t have believed it. That night is a reminder that as much as I try to project Justin’s future for his own benefit, I can’t entirely guess what progress he’ll make, what new skills he’ll master. He’ll continue to shatter my expectations for him, and I have to remember that fact as I try to plot out the best trajectory of his life. Justin will always be full of surprises.
And thankfully, as time goes on, there seem to be more and more good ones.
January 19, 2013
Dear Miss America Judges
Dear Miss America Judges,
This past Saturday night after a nice meal out I snuggled up with my hubbie, and turned on the Miss America Pageant. This occurred in part because nothing is as fun for me as watching gorgeous women parade around in swimsuits after having stuffed myself with bread (it was warm AND crusty!), and in part because in spite of having seemingly thousands of channels at our disposal, nothing was on television.
Literally.
As I settled deeper into our bed sporting my “forgiving pajamas” I heard something on the broadcast that forced me to sit my tired body up in bed (you know it was good if I was willing to elevate myself). It turns out that one of the contestants, Alex Wineman from Montana, is on the autism spectrum. After propping myself up I next watched in awe as this beautiful young woman took the stage to introduce herself in the twenty-three seconds she was allowed to do so. She made great use of her time, telling the audience she had autism and that she had been bullied as a child. She finished her spiel with almost casually mentioning that until recently she hadn’t known it was okay to have autism.
It was then I found myself crying during a Miss America Pageant. Dear God, what has my world come to.
At this point I actually made the supreme effort to get out of bed and google her (I’m so proud of myself) to find out more information about her. In flipping through a number of posts about her since that night so many of the things we autism bloggers are always writing about popped up, namely commentary she has given with such maturity, and confidence. During an interview with KRTV she declared that for her, “it’s not autism that defines her, she defines it”. That “spreading the message that everyone is different whether they’re autistic or not- it not only spreads autism acceptance, but a universal acceptance.” And last, but not least, my personal favorite: “Normal is just a dryer setting.”
Amen to that.
Judges, I just want you to know (and I am certain you care dearly about my opinion) that if there’s a deserving contestant down the road, that it’s time for Miss America to get with the program, and crown a differently-abled woman onto that stage. Of course, I say this with the profound bias of having two differently-abled kids myself, but there’s another reason as well. Prior to the event, by online voting, Ms. Wineman won the People’s Choice Award.
In the words of the wonderful Sally Field, they loved her. They really loved her.
I neither know Ms. Wineman nor have witnessed her level of autism, but upon further reading I’ve learned that she’s had great difficulty with speaking, and has had speech therapy for many years. She even mentioned in the interview that she’d stayed in the background during childhood a great deal because of her difficulties conversing. Since she was bullied as a young girl, I imagine that along the way she had some trouble making friends. I would hazard a guess that since she didn’t know it was okay to be autistic until recently, that she sometimes struggled with self-esteem issues. And yet, there she was on that stage, pushing herself into an arena that requires public speaking engagements, a gregarious nature, and a high level of confidence and poise.
And throughout her brief time in the public eye that night, she achieved all of those goals.
So, my dear judges, I have to part ways with you by saying in my not so humble opinion that Ms. Wineman, despite not taking the crown, truly won that night. This is no slam against Miss New York, who actually made me enjoy tap dancing for three consecutive minutes. No, it’s just that this brave young woman had to scale mountains to get where she is, and it seemed as if the other contestants might only have had to traipse a few hills to get there.
And since apparently character factors so much in this contest, I just think that should have been given more consideration. It should at least count more than the 15% allotted to the “fitness/how does she look in a bikini” portion of the event.
Again, just my opinion.
So Ms. Wineman, if I haven’t made it clear, you got my vote, and obviously the nod from many other people in our country as well. Congratulations for taking a stand and giving inspiration to thousands of young woman who may be struggling daily with who they are, and how they fit into this tough, predominantly neurotypical world. As far as I’m concerned (and really, my voice means everything), you won, and you’re so right.
Normal is just a dryer setting.
January 12, 2013
Empathy and Autism
Since the tragedy in Newtown much has been written about the fact that the killer, Adam Lanza, had Aspberger’s, a form of autism. I know I read that fact with a heavy heart when it came out, and from reading other bloggers and having conversations with “autism moms and dads”, I know I’m not the only parent of an autistic child to feel that way. I feel we’ve come so far in teaching understanding and acceptance in the years since my oldest son was diagnosed, and it is completely disheartening to think some of that progress has been mitigated by such a heinous act. As I’ve written before in a prior post on the subject, autism didn’t make Adam Lanza a murderer, mental illness did.
Period.
The capacity for empathy, or the lack thereof of the perpetrator, has been written about a great deal as well. I don’t dispute that this particular emotional skill was probably missing in this individual. What I do dispute is that it’s missing in most people with autism. I can’t speak for people with autism, and I’m certain most of them wouldn’t want me to. I think that it’s dangerous to assume those with the disorder can’t feel for others just because it seems their reactions to situations are often different than ours, including facial expressions, or an inability to speak. As I’ve said, I won’t speak for people with autism.
But I can speak on behalf of the two I’m raising.
I am a constant and fierce advocate for my children, and as such I’m always talking about them, sharing stories and anecdotes at times with strangers. I try to convey the commonalities they have with “typical” children, because I find that when people can relate to something, they are often more receptive to it. On occasion I run into people who know I write about them but haven’t met them, and I admit it’s gratifying to sometimes see their preconceptions about autism shattered in front of my eyes.
Ironically this happens the most with Justin. Usually within a minute of meeting him he’ll make the “eeee” sound, or exhibit some type of stereotopy that paints him as “different”, and I’ll see a knowing nod from my new acquaintance. What generally stuns them is my son’s affectionate and generous soul, as he frequently engages with me in some sort of physical embrace, even when we’re out and about in the community. This is usually followed by a considerable amount of gazing into my eyes, which often seems to engender a great deal of surprise in our new friend. Both affectionate and generous with eye contact- two preconceptions about autism dismissed in a matter of moments.
I don’t want to leave out my younger son, because empathy abounds within him as well. A perfect example of this is his reactions to “Moviepalooza”, the McCaffertys answer to cold weather and illness coupled with not a lot of things to do outside of the house. The last day of our holiday vacation I spent curled up on the couch with my youngest child, sharing the experience of ET with him for the very first time. He was sucked into the film from the first scene (I know this because he barely asked me for snacks during the movie), held rapt by the storyline, occasionally peppering me with questions and concerns.
When we got to the grand denouement where ET finally goes home, he literally had to sit on my lap, so overcome with sadness was he that an alien and a little boy had to part. Genuine tears ensued, with promises by me that ET would come back to visit (I had to say something), promises that seemed to placate him. He asked me twice later that evening if ET could really come back, and I assured him that since it would happen in his imagination, he could envision whatever he wanted. He smiled, and said he was going to write the script for ET Two.
Empathy and creativity at work in a child with autism. Imagine.
People sometimes ask me why I write, and in part it’s because of this. Yes, my kids are different from the “norm” in many ways, but we’re all “different” from each other, just to varying degrees. We can retain our uniqueness and still find those commonalities that bind us together, that common ground that makes us all an integral part of society at large, and an important part of our smaller communities in general. We are all more alike than we think. But regardless, we need to demonstrate not just respect for our differences, but celebrate and learn from them too. Every day I learn something new from my children, am constantly amazed at how they teach me and those around them.
They often leave me in awe. And if you knew them, I’m confident you’d feel that way too.
January 6, 2013
Cleaning House
This past fall I took a bit of a hiatus from writing as much as I usually do, and instead took a good long look at the state of my house. Topically, it wasn’t in such terrible disarray (that is if you ignored my dining room and kitchen tables, the two Bermuda triangles of my home where papers seem both to congregate and disappear with impunity). On the surface things didn’t look too bad, but really, I knew better.
I’ve been spending most of my free time the last six years writing a book (shameless self-promotion to come), contributing to magazines, concocting my play, and of course penning this blog, and have wantonly ignored the shelves and cupboards of my helpless home as a result. This fall I knew it was time for a colossal “spring cleaning” when my youngest got into one of my bureau drawers and asked if he could color one of Justin’s Christening cards.
I am a bad, bad housewife.
I am also however a girl who loves a good project, and I dove into reclaiming the inner sanctum of my abode with my usual enthusiasm, and found it all quite cathartic. A sushi-making kit from 2002? Disgusting, and gone. NJ Monthly’s Best Eats from 2006? History. Pants I haven’t worn for multiple unpleasant reasons since the first Bush administration? Donated. My kids’ former Halloween costumes? Safely ensconced in their closets.
I am not that heartless.
I saved my bedroom for last, in part because I knew this would be the biggest job, and in part because of potential minefields awaiting me. Until a month ago I had filed and saved perhaps every single piece of paper documenting both boys’ journies with autism, all categorized neatly in manila folders, and organized in my own particular fashion that worked for me.
To be fair to my hoarding predilection these documents were incredibly helpful when I was writing my book, as my memory was pretty shot by the time we left Virginia, and reclaiming my New Jersey territory didn’t seem to jostle it. I used a number of these papers to help me remember those early days of Justin’s pre-diagnosis, and of course everything that happened afterwards. I even used some of them to help construct the “Zachary section”, even though my writing pretty much occurred just after the events at hand.
It sucks getting old.
The truth is the information was invaluable, but I hadn’t looked at those files before my “purge urge” last month, nor have I missed them since. As sentimental as I am, I do not need to retain for posterity every single art project my children have created since birth. Potty training how-to’s can go to the landfill (hallelujah chorus twice for that one). Gluten/casein-free recipes I downloaded from the internet can follow suit (in part because they usually suck, and in part because if I haven’t made them in five years, it’s probably safe to assume it’s never going to happen). Discarding these files was easy, as I employed the McCafferty “year dictate”- that is, if I haven’t opened it since last Halloween, to the rubbish it must go.
And for the most part (except for my friends’ birthday cards, which I am saving for my nineties as a future pick-me-up), I remained faithful to the rule.
Eventually I got to the core folders, the ones documenting Justin’s progress through Early Intervention and school in two different states, and I took a moment to peruse a few of them, all literally as thick as a hardcover George R.R. Martin. Encompassed in manila were all of his progress reports, assessments, and goals for the future. I let my eyes wander down yellow pages formally part of an often official triplicate, checking dates which made me recall where I’d been both emotionally and physically when they’d been filled out.
Some of Justin’s targets revolved around socialization, primarily that he would one day have a friend. Many of the papers outlined strategies to tear him away from his perseverative pursuits, all hoping that he would one day engage in more “typical play” than he did as a toddler. Most of the goals centered around communication, either encouraging him to expand his sign repertoire, or soliciting those coveted vowels and consonants that almost completely disappeared after his first birthday. All were designed to change the core of his behavior, some of the essence of who he is.
I admit, even after eight years of knowing definitively that my child has autism, I had to put those files down for a breather. Chocolate helped.
And it hit me, as I sat surrounded by flimsy cardboard and discarded candy wrappers, that the focus of my goals for Justin have shifted radically over the last decade. The dreams I had for the infant who made me a mom nine years ago are indelibly different from those I long for now.
Most likely Justin will never attend college, have a best friend, or have a conversation with me that doesn’t include his iPad. Those realities still make me sad at times, but I often wonder for whom that sorrow applies. Justin is thrilled with his life. Frankly, my husband and I reflect frequently upon the fact that he is often the happiest member of this household. I have the gift, and it is a gift in the world of autism, of knowing that if I can keep him safe, engaged, and challenged throughout his eighty years, his will be a fulfilled and productive life. At the end of the day, if through luck and hard work I can procure those realities for my son, his will remain a joyful soul. I no longer want to change who he is.
I simply want to enhance his life as much as possible.
I gathered up the files surrounding me, and unceremoniously dumped them into a waiting garbage bag. I no longer have a need to return to the past. It’s time to focus on the future, on acquiring that safe haven for my firstborn son that includes a job he’ll enjoy, and hopefully access to those horses he adores. It’s time to recognize that although we haven’t reached those goals forged so long ago on paper, we’ve been successful with Justin all the same. It’s time to simply revel in him.
It’s time to purge.
