March 26, 2012
I’ve been writing this blog for two years now (happy anniversary to me!), and of course, over time, I’ve altered a few things in its format. When I was just starting out, I decided it would be a great idea to ask people to “guest blog”. While all of my requests were met with gracious permission, I eventually felt I was just adding one more thing to a long “to do” list of incredibly busy women, so I abandoned the effort. On occasion however I still link to other pieces of writing, those that either cover an incredibly important topic, or just knock me flat with their eloquence, or both.
Today is one of those days.
It’s been almost eight years since my eldest son was diagnosed with autism, and in those early days of discovery, acceptance, and grief, I initially found myself turning to the internet for solace and information. While at that time autism was becoming a more prevalent topic it certainly wasn’t a household word, was in fact an issue I’d never even worried about while carrying my son. Still, when I found myself eager for more information than my pediatrician had handed me on Justin’s “diagnosis day”, it was simple to locate websites discussing the many potential causes, treatments, and outcomes for a child on the spectrum.
After exploring many of these sites I found I wanted to hear from parents going through the experience themselves, so I could garner opinions on everything from what type of therapy to use, whether or not to dabble in the biomedical arena, even how I should approach teaching my child how to communicate. I dove into the chat room forum, reluctant to post my opinions, but eager to learn from others. In many of those rooms I found incredibly respectful discussions on the merits of one type of therapy over another, and thoughts on the pros and cons of the gluten-free casein-free diet so widely used in the autism community. I even discovered suggestions on how best to take care of oneself after the initial autism diagnosis, some of which I should have explored more thoroughly. Many of the threads were thoughtful, kind, and non-judgmental.
And many of them were not.
I rarely drop into those virtual dialogues anymore, due in part to the fact that some of them were upsetting, but mostly due to the fact that keeping two young kids on the spectrum alive while trying to write about the experience pretty much sucks up all of my free time. I’m well aware however that while some progress toward a more civil approach to our differences has been accomplished, that we as a community still have a long road to travel. It’s something I think about often, and is the genesis behind everything I write. This is why when I saw this post being recommended on the Autism Speaks website not too long ago I actually remembered to bookmark it for later, then surprisingly recalled having done so and read it that evening.
These days, that is a major accomplishment for me in and of itself.
It’s an amazing essay, written by Leigh Merryday on her blog “flappiness is…”. As I read it I kept wondering if she was going to address this issue or that, and at every paragraph I was happily rewarded with a cogent discussion on each particularly divisive factor so rampant within our community. She called it “Silencing Ourselves”- A Plea for Civility in the ASD Community”, and it is one of the best-written essays dealing with this topic I’ve come across in years..
In fact, I’m quite jealous I didn’t write it myself.
I know we all have just so much free time on our hands, but if you have a few minutes, please check out her writing at the link below. It’s a great read, and an important one. And while I’m a great “purger” of bookmarks, this is one I’m keeping around for a long, long, time.
Thanks for writing this Ms. Merryday, and may everyone who does so please take it to heart.
March 23, 2012
Today’s Gratitude Attitude goes out to my fabulous actresses and friends, Bobbie Gallagher, Babette Zschiegner, and Mary Craig, for a great rehearsal this morning. I can’t believe our first show is in four weeks! Major thanks to everyone who is helping to promote the play, I truly appreciate it!
March 21, 2012
Justin’s school bus grinds to a halt, and as I approach the stairs that will lead him back to my care I hear his low-grade “eeee”, which can either signal happiness, or distress. He lumbers down the stairs and brushes past me, ignoring my query of “Hi Justin, how was your day?”, and immediately runs to the passenger side of my car to see if his “we’re going out” bag is inside. Since we’ll be staying home today it’s not, a situation which evokes in him another torrent of “eeee” sounds, quite vehement in nature.
It’s now apparent to me that the first round of vowel sounds I heard initially were emanating from a very irritated boy.
I thank his lovely bus driver and follow Justin to our front door, which he has unceremoniously flung wide open. I hear him before I see him, my almost-nine-year-old who is sobbing his heart out on my living room couch. I am grateful that Zach is upstairs playing in his room, which buys me some time to try and figure out what my non-vocal child is trying to communicate.
Making my way over to the sofa I trip on his backpack, my visual cue to release his iPad from its confines in his new Spiderman carry-case. My fingers quickly find his communicative device and activate it, in the hopes I can cajole out of him what he wants. As I walk over to my son, iPad in hand, I recall a conversation I’d had with his teacher in the past week. She had shared an anecdote about Justin which gave me some hope that my child might one day attempt more complicated conversations than simply asking for juice, or telling his aide that two plus three equals five.
It seems that not too long ago the company that makes his coveted macaroni-and-cheese lunches saw fit to change their recipe, rendering their creation far creamier than my son would prefer. Although they changed the label slightly to indicate its new “creamy nature”, nobody noticed the difference. On this particular day Justin’s teacher served him his lunch expecting his usual reaction of unbridled enthusiasm (my boy, like his mom, loves his carbs), but Justin wanted nothing to do with his pasta.
As soon as he saw his meal minus lid he pushed it away, making his staple sounds of irritation, clearly unhappy with his designated meal. His lovely teacher of course was confused, as he’d consumed this concoction eagerly for months, and went to retrieve his iPad.
She encouraged him to “just try a bite”.
His response was, “garbage”.
My son’s teacher is not one to give up so quickly, so she tried again.
This time my son’s answer was, “trash”.
Knowing I hadn’t sent in his “back-up lunch” of peanut butter and jelly that day, she gave it one more shot, reminding him in no uncertain terms that he usually loves this meal. She shared with me that he then looked her in the eye, pushed the offending container even further away, and pushed the button for “stop it”. Twice.
My eldest child had just simultaneously disrespected his teacher and held his first conversation with her. Both of us had never been so proud.
I snap back to reality as the corner of a comforter smacks me in the face, and I reach over and free Justin’s own unhappy face, offering him what I like to call “his words in a rectangle”. I admit I don’t have a great deal of hope that this will solve anything, because although he uses the device often at school, he’s far more apt to push it away at home than employ it to get his needs met. Still, I have to try, and hope for a single mand (request) of a wish I can easily fulfill.
I wish it worked that way for my needs too.
I hand him the device, and he surprises me by not shoving it away. Instead he sits up and throws off the now offending blanket. My son presses the “I want” button, scans through a few pages at lightening speed, and presses the word “toast”. He then hits the top bar, which sings out in its slightly robotic voice “I want toast”, and stares at me. To date, this typical single request has been the entire extent of our “verbal communications”.
But today is different. Today I’m incredulous that this boy is longing for a piece of meticulously buttered whole wheat bread, particularly because the slice I offered him this morning ended up in the garbage can. I look at my son and say “Really Justin, you want toast?”, and without batting an eye he leans in towards me a bit and hits a button that says a resounding “yes!”. Then he throws his cover to the ground, stomps off to the kitchen, and takes his place at the table. He’s made things clear. It’s 4:00 in the afternoon, but my boy wants breakfast.
Considering this is the longest amount of dialogue we’ve ever had, you can damn well be certain those whole grains were quickly on the way.
I sat down next to him at the table and watched him consume his snack with gusto, all smiles now, actually giggling when I handed him a napkin. I ponder for a moment what it must be like to be approaching double digits, and not be able to summon the sounds to request a staple of the food pyramid. Pushing that thought away I smile, because he actually did get his needs met, just not in the traditional manner to which most of us are accustomed.
My boy got his toast. And his mom got to talk to him.
Our dialogue didn’t center around what he’d done in school that day. We didn’t even have a simple discussion about the weather. But it’s progress, pure and simple. It’s progress translated from school to home, which is even more important.
It was just a simple conversation between a boy and his mom.
It was hope.
March 19, 2012
“Mommy run, giganotosaurus is going to eat you!” My youngest grabs my hand, and pulls me toward his intended refuge. After traipsing through a few feet of mud, and trying to avoid trampling the premature daffodils poking their way through musty loam, we reach our destination. My son and I crouch down behind the miniature replica of our house that its previous owners built for their daughter (the one that now houses all our pool paraphernalia), and clutch each other in “terror”.
“Do you think he saw us Mom?” Zach asks breathlessly, and I smile at him and respond, “Nope, I think he’s too busy trying to eat that brontosaurus”. I watch him battle a great internal conflict- stay safe in Mommy’s arms, or take a sneak peak at imagined carnage around the corner. Eventually, the sneak peek wins.
So much for the books, web sites, and professionals who told his autism diagnosis would most likely entail a limited imagination.
Truth be told, our youngest son has made incredible progress toward what I like to call a “typical- untypical life”. Four years ago this fall his parents watched as our joyful, inquisitive, toddler was rendered almost mute following a nasty virus that lingered with him for weeks, seemingly robbing him of his personality, and all but three words (Ma, Da, and ball). In the span of one presidential term (and thousands of hours of school and therapy), we’ve been fortunate enough to see the return of his former personality (albeit with the addition of a fairly cantankerous side thrown into the mix).
His family, therapists and educators have also witnessed a veritable river of words and queries. His blossoming desire for friendship (and one day, a wife and five children) has been a joy for me to fulfill (at least the first part). Perhaps most gratifying has been watching his sweet side return to the forefront, as when we see him attempt to make his brother feel better, or when he tells me he loves me “more than dinosaurs, Transformers, and Thomas together”.
Of course, two hours later when I denied him access to television, he also informed me he wanted to be adopted.
There have been so many surprises with both boys along the way. My oldest child, who is moderately autistic and non-vocal, spent most of his early days either enmeshed in a tantrum or seemingly plotting the next one. He communicated primarily by pinching us, even though we worked with him for hours and hours on a daily basis to afford him a different way in which to get his needs met.
Through therapy, discipline, and perhaps most importantly, Justin’s inherent desire to achieve peace, he eventually shed his seemingly impenetrable armor of unhappiness, revealing the mostly ebullient child he is today. Of course, often with autism moods and behaviors are cyclical, and we have our setbacks. Despite these departures from peace however he remains affectionate, connected, and loving toward those who make the effort to know him.
This is the child who runs over and kisses me if I stub my toe and say “Ow!”. This is the little boy who recently was the only one in his class to greet the return of his teacher post-workshop with a mighty hug and eye contact, indicating he might never let her go. This is the son who places his hands on my face a half dozen times a day and pulls me down for a kiss, coupled with an intense gaze I never conceive of breaking. This is a child for whom love is a given.
Yet another surprise from much of what we read and were told eight years ago.
I think often of the adage “life is full of surprises”, one of those annoying idioms I’ve found to be true. My children defy my expectations daily, destroying my preconceptions of what autism would entail for our family with their affectionate natures, and frequent desires for connection to our world. That said, I won’t ever imply that we haven’t struggled despite their progress. There have been days (and frankly months) where me and my husband thought we might not make it through what seemed the hopelessness of our situation, that we worried we might never recover the joy that was once so prominent in our home.
But throughout the difficult and sometimes agonizing times, we’ve always held onto that elusive thread of hope. For anyone out there whose child has just been diagnosed, I hope that somehow you are able to retain that glimmer of promise, perhaps sequester it away until it can be realized. For me, just knowing hope was waiting in the wings, patiently stored there for when I was ready to believe in its possibility once again, was great solace in and of itself.
And from the mom of two on the autism spectrum, if it’s within your grasp, try to keep yourself open to the possibility of imagination.
March 14, 2012
I hear a triumphant “Got one!” shouted from behind me, but I am in pursuit of my eight-year-old son with moderate autism, and can’t stop to behold the treasure a pre-schooler has found. I’ve attempted to bring Justin to the annual Brick SEPTA (Special Education PTA) Easter Egg Hunt at Windward Beach, and he’s let me know in no uncertain terms that he wants no part of it. I make a mental note to skip this part of our Easter traditions with him next year, realizing he may just have outgrown rooting around on the ground for colored plastic cylinders. As I chase him down a hill toward the river, I look back over my shoulder one more time to take a brief glance at the festivities.
To my delight, at least fifty special needs children are gleefully participating in the event that Justin has decided he is way too cool to attend.
This is just one of many events that our wonderful local Special Education PTA has hosted over the years. There’s the annual Halloweenfest, where special needs children can paint pumpkins, participate in a hayride, and down large amounts of free buttery popcorn, which has always been my son’s favorite part.
For the first time this year SEPTA, in conjunction with the Lake Riviera Middle School and the Brick Challenger Program, hosted a dance for special needs children and their siblings, an event which was a resounding success. All these efforts are an attempt to make certain that kids who may be seen as “different” have the opportunity to participate in the same childhood staples that most of their parents have attended in the past.
This is why, despite my son’s disdain for this particular event, that I love the SEPTA Easter Egg Hunt.
I’ve taken my other child to local hunts over the years, but due to his tender age, he was often crowded out of the chance to collect his coveted prizes. On occasion I’ve had to literally cover eggs with my feet just to make certain my boy would walk away with one plastic concoction.
The great thing about the SEPTA Easter Egg Hunt is the abundance of eggs placed strategically in open view so that every child can claim at least a few for his or her own, and can truly participate in a traditional holiday ritual. There’s also a guaranteed visit from the Easter bunny himself, which after I concluded chasing my son back up the hill I was gratified to see that his presence brought joy to a number of children. Every kid who wanted to greet him was able to get a turn, and in a timely fashion.
All in all, it was clear that every child participated fully in a timeless, and fun, tradition.
I’ll most likely be taking my youngest child to scour the earth for pastel eggs this year, and I’m certain he’ll revel in discovery and acquisition, much as his mother did many, many, many decades ago. If you are a member of the Brick SEPTA and would like to participate, please see the link below:
Saturday, March 31st, 11:00 AM, Windward Beach
See you there, and don’t forget your Easter basket!
March 12, 2012
I step out onto the stage, the theater manager trailing slightly behind me. We’ve attained these heights by walking through a labyrinth of hallways in the underbelly of the building, all of which eventually converge into one slim stairwell, which has brought us here. I tentatively approach the edge, am rewarded with the sight of hundreds of empty seats waiting upon my words, an old but working venue with a real balcony to boot.
My young guide starts to tell me about microphone amps and soundboards, but I momentarily tune him out as I think about what else has brought me to this exact spot. I think about how the words of my play, Raising Autism, will be performed here in a month, and I am exhilarated. I remind myself that I will be one of the actresses saying these words, and I am momentarily terrified. The entire enterprise of writing, acting, directing and producing a play is an unprecedented stretch for me.
Then I recall that some of the simplest aspects of daily life are an almost Herculean stretch for my eldest son, a boy with moderate autism. I take a deep breath, and take one more step.
I never actually intended to write a play about autism, had frankly never entertained the possibility that I could write fiction. In a dual effort to share my story of living with two children on the spectrum, and to attract publishers for my memoir about those experiences, I began a blog two years ago. I quickly found myself quite content to remain within the confines of the non-fiction genre. The idea to write a play about different families’ experiences was actually born out of frustration, and came to me while driving in my car, where it seems most of my decent ideas still originate.
My mom and I had recently pitched the idea for our educational non-profit to a local school district, a program whose central tenet is pairing typical and non-typical peers (with a strong dose of anti-bullying thrown into the mix), and we hadn’t had any takers. My inquiries sent to other districts in the area had been met with either silence, or an interested but polite decline. I remember thinking that I had to do something to get my name out there to attract attention for it, and if possible, I also wanted to make this venture philanthropic in nature.
As I waited for the light to turn I thought about the amazing stories I’d read on various blogs about autism over the past few years, and the riveting memoirs I’d discovered as well. I considered the fact that there might be a few tales left to tell, that in a state like New Jersey, where one in ninety-four children is affected with autism, I was potentially surrounded by a community of people who might be interested in those stories.
I thought about how POAC (Parents of Autistic Children), which is literally around the corner from me, had done so many wonderful things for families in the autistic community residing in the Garden State. I figured if anyone actually showed up for this fundraising event, I might be able to contribute slightly to their efforts. These efforts range from educating parents, professionals, and law enforcement about autism to my personal favorite, providing a range of activities for families where their children with autism are welcome, and safe.
Then the light changed to green, my son gently kicked me in the back to remind me to drive, and the concept for a play was born.
I knew it would be impossible to encompass every type of child on the spectrum (as well as the parents who raise them), so I brainstormed characteristics of various children I’d read about or met over the years, and slowly four distinct individuals began to form. There are a myriad of issues surrounding the raising of a child with autism, and although I certainly couldn’t include them all, I attempted to select those which had affected many families with whom I’d spoken since my first son was diagnosed in 2004. Finally, I sat down to flesh out the women who would tell these stories, because I wanted the play to come from a mother’s perspective, which I felt I knew best.
And like old and trusted friends, those characters were already there, just waiting to be given a voice.
All of the women are quite different from one another, both in temperament and in background, and all three are reading from their “diaries”. One of the characters is a young mom with a newly diagnosed son. She is struggling with the label given her child, her fractured marriage, and the fact that she has recently discovered she’s pregnant again. The second is a single mom faced with the challenge of almost sole care of her brilliant but challenging pre-teen daughter with autism, a woman who is able to channel faith to give her the strength to persevere in what seems to her like almost insurmountable odds. The last character is a college professor discussing her experiences raising adopted teen-aged twins with her partner, sharing both the challenges they face now, and the struggles of having two children diagnosed on the spectrum well before autism was a household word.
I have to admit, I really like these women. If they were real, they’d be my friends.
My reverie is slightly broken as the enthusiastic manager begins to educate me as to the merits of a spotlight versus more traditional lighting techniques, and I realize I’d better pay some serious attention to the information he’s sharing with me. For the moment I put aside my desire that this play will garner POAC a veritable boatload of funds. I shelve my intent to offer the script up for free when I’ve finished performing it for my “pet autism orgs”, because really anyone with a living room, three chairs, and a few literate women could easily put this play on as a fundraiser.
I stop thinking about how fearful I am that my middle-aged brain will forget a crucial detail in the production of this piece, like advertising it, or wearing deodorant the nights we perform. For the moment, I ignore the fact that when I hit this stage I might be overwhelmed by the sheer weight of what has brought me to this place, the suffering I’ve witnessed in both my children, coupled with their multitude of triumphs. I fear I might have difficulty forming the sentences from a script that in many ways serves as a backdrop for my life.
Then once again I remember how often my son struggles just to say the word “mom”, and I know I can do it. I owe this to him.
I barely miss tripping over wires that would have landed me perilously close to the stage’s edge, and make a mental note to avoid tumbling to the floor for dramatic effect on performance night. I turn to the young man whose grandfather has so graciously reduced the price of this rental due to its philanthropic bent, and give him my full attention as we discuss whether our chairs should be placed in front of or behind the scarlet curtain.
I shake off my worries and concerns as I’ve done hundreds of times in the past eight years, and try to live in the moment. Through the graciousness of POAC, in a few months I will get to share an amalgamation of so many mothers’ stories to a live (and hopefully receptive), audience.
I will have the chance to honor my sons.
And as I carefully back over the slim strands of the wires which will carry my words throughout this elegant room, I allow myself one last extraneous thought.
Break a leg, Kimberlee. Break a leg.
For more information about POAC Autism Services or tickets for the play, please visit POAC at:
March 9, 2012
Absolutely ridiculous amounts of gratitude to write about this week…
First, major thanks to Vanessa Ira and the staff at Exceptional Parent Magazine for allowing me to publish an article about my fundraising play, “Raising Autism”, which will be produced for POAC Autism Services. It is an honor, and I am so appreciative!
Second, a note of deep appreciation to the staff at Brick Township High School, as well as to Colleen, my “sound and lights person”. Mr. Biblheimer and Jennifer Roebuck, employees at the school, were instrumental in helping me figure out exactly how we’re going to pull off the first show. It’s just six weeks away, it will go by quickly. Thanks to all for their cooperation!
March 7, 2012
“No Justin, not yet honey”, I say for the hundredth time in what I like to call my “faux calm but really freaking out voice”. Once again I block my eldest son, who has moderate autism, from pushing the button which will gain him entrance to the inner sanctum of Children’s Specialized Hospital. My choice to prevent his entrance is met with more tears and tantrums, and at the sound of his elevated distress, the kindly nurse who just took his blood pressure and weight statistics comes out of her office yet again to offer her assistance.
We’ve reached the end of perhaps the longest half hour I’ve experienced in quite a while. I’ve just spent thirty minutes filled with my distraught boy trying to escape the “evil confines” of the waiting area, a room with which he is completely familiar as we have been here many times before to meet with his former developmental pediatrician. The nurse has even gone so far as to slide by Justin into the back of the building and tell the new doctor to “hurry up”, an action which has made her my new best friend.
I share this life-changing information with her, and she laughs. Finally, a mere fifteen minutes after our scheduled appointment (but in reality, a lifetime for me), the secured doors slide open, and our current developmental pediatrician makes his appearance.
Justin is less than impressed.
The next hour is spent with me trying to entertain my eldest with the twelve thousand preferred toys I’ve brought, ones which usually engage him, while I simultaneously try to make it clear to our practitioner in some semi-coherent fashion why we’re actually here. I am distracted by my son’s myriad attempts both to don his coat and make me wear mine, which will signal our imminent departure, and by the loud intermittent whooshing sound of the heating vent which is preventing me from hearing half of what the doctor is saying.
I ask him if the vent can be turned off so I can hear him better. Of course, it can’t. I scrape my chair in closer to him, an action which momentarily gives Justin hope that we are leaving, and leads to a burst of greater protests when this does not become reality.
I remind myself that during most doctor’s visits Justin is compliant. Today, however, I am taking one for the team.
As our practitioner spends a few minutes conducting a physical exam on my son, I allow my mind to wander to my youngest child. He has autism too, although his is very mild. Zach is at the moment living out one of his dreams to be a paleontologist, as his entire pre-school is currently engaged in a dinosaur event of the greatest magnitude. I sit back in my chair, and am struck by the dichotomy in my sons’ days. My eldest, desperate to leave his current situation. My youngest, witnessing a volcano erupt, using tools to excavate “ancient artifacts”, and consumed with joy as he acts out his current preferred vocation.
And I fully admit as my son’s exam is concluded, and he heads once more for his coat, that I wish I were with his little brother.
The truth is, I’m tired, really, really, tired. This is our third stop in the “gathering opinion tour” as to how to help our son, who has regressed in terms of behaviors and overall demeanor since an illness struck him four months ago. I refocus my attentions on our pediatrician as he suggests a new medication plan, one completely different than the one suggested by the medical brethren at CNNH. I mentally catalogue his reasons behind the suggestion, hoping I retain them long enough to share them with my spouse. These are serious drugs both practices are offering up to us as solace to Justin’s increased aggression and malaise, and the decisions his father and I will make are soul-suckingly difficult.
At this moment, I just don’t feel like making decisions anymore. Of course, the thought chaser is, I have to.
We wrap up our visit, Justin all smiles and joy at our impending departure, and I manage to corral him within the office long enough to grab a scrip for his current prescription. We head for egress, he fairly dragging me along, his doctor asking us to wait in the foyer for some important information he will print regarding his medical suggestions. Justin and I approach the sliding doors, and there is no longer any chance of containing him. The information will have to wait.
And as we head for the car, braving gusts of cold wind which Justin seems to enjoy, I silently ask the universe for some quick solutions, and clarity.