April 2, 2014

World Autism Awareness Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:39 am by autismmommytherapist

Disney and Halloween 2013 192

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

Autism Awareness Month

Posted in Life's Little Moments, My Take on Autism tagged , , , at 9:25 am by autismmommytherapist

“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 7, 2011

Get the Picture

Posted in If You Need a Good Laugh, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , at 7:59 pm by autismmommytherapist

Dearest Picture People,

My name is Kimberlee Rutan McCafferty, and I have been a loyal patron for almost eight years now, a customer who has spanned two states to buy your particular photos. My family’s relationship with your establishment began a few months after the birth of my eldest son in northern Virginia, where I would faithfully schlep him to our local mall at least three or four times a year to capture his cuteness on camera. We’ve since relocated to New Jersey, where I make a longer schlep to take my two sons, both of whom have autism, to your shop. Between Halloween, Christmas, and birthdays, during the last decade my family has frequented Picture People on many, many, many occasions.

Trust me, I could wallpaper an entire room (we’re talking family room, not bath) with the amount of product I’ve purchased from you.

I know this may sound like a nutty obsession on the part of a woman who clearly has her hands full (there was a time I could barely get my first child into a car, much less get him to smile for a photo shoot), but I am a self-professed shutterbug. After my passion for writing (okay, and perhaps scrapbooking, I am THAT cool), I admit I adore photography, and have used up almost every square inch of wall space we possess to project the images of my little boys. Frankly, it’s just one giant photo shoot chez McCafferty.

The truth is there are a multitude of things I could be doing with my children other than running maniacally around a portrait studio as I attempt to make them smile, but I enjoy having those formal photos around the house, and it’s worth the effort to me. Having two children on the autism spectrum has forced me to give up any number of things I took for granted I’d experience when I reproduced (you know, like the eventual return of a full night’s sleep, and a chance at retirement), but having gussied up pictures of my kids is one slice of “normal” I refuse to relinquish.

I’m just that stubborn.

So when I heard from one of my favorite photographers yesterday that not only have you discontinued the practice of emailing these digital memories to customers to peruse at their convenience (a Portrait Club Member perk I adored, since my husband is even pickier than I am), I will share that I did turn my head faintly in the direction of JC Penney’s for a moment. When I was further informed that your store would only be keeping my kids’ photos on file for twenty-four hours now despite my “elite” customer status, I admit I pondered whether my GPS would work indoors to help me find your competitor.

Immediately.

So, I simply have this to say to those in charge. I am one of those annoying people who always says they’re going to write a letter of complaint and never does (the discontinuation of McDonald’s fried apple pie and my desire to abolish “skinny jeans” both come to mind), but today, well, today, I’m venting my wrath in prose. I’m not asking you to light up your studios blue (although I’d appreciate the attempt at added autism awareness, I understand those cerulean filaments might not make for a prime photo opportunity for everyone). I’m not requesting an exception for those of us with children who might not be capable of waiting an hour-and-a half post-shoot to bring home our pictures (hell, I’ve been there when it’s taken thirty minutes just to upload and view our take on a computer screen). Truly, I’m not vying for special treatment.

You’d know it if I was.

I also understand the economy sucks. I completely comprehend the principle of “once they leave the sale is lost”, or whatever far zippier phrase those marketing geniuses have concocted to raise revenue. I get the bottom line here. Despite the furry Easter props, and the admonition to “make special AND unique memories AND have a great day” every time I place a call to your company, the ultimate goal is to make money.

It’s always about money. Sadly, it’s no longer about me.

But I am asking you to consider this. I’ve been at that mall, walked by your store and recognized a customer, then seen her hours later on that same swivel chair with her sobbing infant after I’ve completed half my Christmas shopping and had a manicure. There are plenty of children who do not reside on the autism spectrum who can’t wait around for mommy to bring home their preciousness, “normal” children who risk slipping into a total meltdown that can be heard from the outer limits of the parking lot (trust me, I’ve heard the faint cries as far away as Macy’s). And given that economy I mentioned before, I’m willing to bet any number of those stressed-out moms might actually have jobs they can’t boycott to return the next day and claim those images, particularly within your draconian twenty-four hour limitations.

It was suggested to me I partake of this option. Since we’re usually five minutes from the Apocalypse at my house on any given day, I “politely” declined.

So please, dear Picture People executive-types, kindly consider what I’ve penned. Bring back the opportunity for the “slide show of joy” I can view with my spouse in the relative comfort of my bedroom. Have respect for the fact that our (and I mean the global, Kumbayah, “our”) children might not tolerate the wait/screaming babies/overwhelming crowds/PMS-state mothers every single time they mug for the camera. Take pity on families trying to forge memories of what their kids looked like in this crazy world, and grant them some options.

Give us back the gift of time.

Because I’ll tell you, there are days in my household where the random sight of those grinning cherubs is the only thing saving my sanity, as I deal with the sometimes tragic, and often profoundly irritating consequences of living with autism. Honestly, just glancing at their photos, in those silver frames I’ll never get around to polishing, simply makes me happy. So come on Picture People, have a heart, and make a Jersey girl smile.

I’ll even let you capture it on film.