Tuesday, April 2, 2013

Light it Up Blue: Autism Speaks; Or, Our Life With Autism

Each April 2, Autism Speaks celebrates Light It Up Blue along with the international autism community, in commemoration of the UN-sanctioned World Autism Awareness Day. Light It Up Blue is a unique global initiative that kicks-off Autism Awareness Month and helps raise awareness about autism. In honor of this historic day, many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges and retail stores are among the hundreds of thousands of homes and communities that take part to Light It Up Blue.

(From the Light It Up Blue website)

For those of you whom I've only gotten to know recently...my six year old Zack has autism. It is a real condition. It is not an imaginary diagnosis, a product of poor parenting and lack discipline, and it is not the result of letting your kid watch too much television. It is terribly real,  systematically life-altering, and chances are, unless you know someone autistic, have worked with autistic children or have a child with autism, you have absolutely no idea what I'm talking about, simply because that's the nature of the thing. If you're not in the belly of the beast, so to speak, you simply can't understand.

I'm not going to recount our entire journey. Instead, here's a list of the blog entries I've written over the years detailing our experiences. If you'd like to read, go right ahead. My very first post about this is here.  In short (and that's a relative term, here):

Just about four years ago, Zack was diagnosed with severe autism. We were at our wits end. He couldn't speak. He only screamed, whined or cried. He didn't know how to "play." Would only fiddle with toys for a second or two, then toss them over his shoulder. So, he never found satisfaction in anything he did. In many ways - and this will sound cruel, but here it is - he didn't act like a human child. He was a screaming, crying, insensate robot that couldn't make his needs known.

The diagnosis was hard to take, more so for Abby than me. I'd worked with autistic children extensively in college (more proof to me that God knows what He's doing). For Abby, the diagnosis with a strange, frightening black door into the dread unknown. What would this mean? 

Again, it sounds terrible: but I think on a very basic level, all parents want their kids to enjoy "normal," healthy lives. Debate the old "What does it mean to be normal" thing all you want. Parents of autistic children will understand this when I say: the moment we received Zack's diagnosis, we realized our definition of "normal" had radically changed.

And we were scared.

People say lots of wonderful, fluffy things about special needs children, and how they are "gifts" to be cherished, and how they're "wonderful in their own way." And they are. But only a special needs parent also understands - very painfully - the steep cost that comes with this gift.

For example - almost immediately following his diagnosis, Zack was fortunate enough to gain entrance into an early intervention program at Binghamton University called the Children's Institute. Anyone in "the life" can tell you that early intervention is SO very important, and makes all the difference in the world. I truly, truly believe that gaining entrance into such a program - one that usually has a waiting list months long - right after Zack's diagnosis was an act of divine intervention.  And I can also tell you, four years later, what an IMMENSE difference it has made. Zack has taken gigantic strides, and it's been because of that school.

But the cost?

Zack was a two year old boy. And Abby, like every mom, was expecting to have him to herself for a few years  before school. And suddenly we're putting our two year old on a SCHOOL BUS in a car seat and sending him to school five days a week, seven hours a day with no nap, all year round.  

Make no mistake. This program has meant the world to Zack and us. He's been downgraded to moderately autistic and some days he seems just a bit overactive, maybe a little childish, and that's it. But for the past four years, he's attended school year-round, with no summer break. And that's been hard to accept, it really has - while at the same time an immense relief, which, of course, produces a fair amount of guilty-parent feelings.

And there have been other struggles. Our house needs to be very regimented and orderly. We need a precise schedule, at home and on the road. Zack is not allowed to watch or do certain things (video games, certain television shows) because of the adverse effect they have on his behavior. We're always constantly second guessing ourselves as parents - are we managing Zack's autistic behavior, or disciplining his NORMAL "I'm a boy and I'm crazy" behavior? 

Zack verbally "stims." Which means he sometimes descends into a world of chirps, clicks, hoots, and cries. It's repetitive, and can repress his personality entirely. Hearing him once, it probably sounds cute. Imagine hearing nothing but that from your child for HOURS. It can be maddening, and also very depressing.

Depending on the day, he'll also often leap up, twirl in place, run his fingers in front of his face, and spin in a circle. It all depends what he's seen on television or a video game, and what he's trying to imitate. And again, it probably looks "cute." Like he's just an active boy. But exposed to it long enough, and you begin thinking of him as a human marionette, whose strings are being jerked by a mindless, repetitive master.

For many years, our social lives were nil. We couldn't travel with Zack. Family gatherings for holidays were nightmares. I had to politely decline invitations to visit from writer friends out of state, because I knew bringing the family would be...well, hell. The whole family WAS able to attend AnthoCon 2012 this year, and that was a major success. We'll be returning again next year.  But it was a first.

And of course, there's the way strangers look at him. Especially because he's tall for his age. And, unlike other special needs, autism generally leaves you looking normal. So when he acts out, the assumption is that he's a bad kid, one undisciplined by his parents.

We've come a long way. Life - such as it is - has risen to levels of "normalcy" unheard of when Zack was first diagnosed. His vocabulary, now, is often outstanding. Academically, he sometimes outpaces his instructors, forcing them to keep up. He can read  and his memory is nearly perfect. He has a thing for numbers, and is mechanically inclined. Over the last year or so, his interactivity has increased dramatically. He initiates meaningful conversation, now. Now, he likes to draw and color. He and his sister play wonderfully now - REALLY play, like "normal." And just yesterday morning, he started dressing himself.

And it must be said, we're blessed. There's great hope that Zack will develop and adjust and enjoy a productive, meaningful life. So many never will. I've worked with the worst ones, those forever trapped inside, able to master UNFATHOMABLE feats of mechanical memory, but never able to communicate with the outside world. Zack will never be that bad off. Our experience is a walk in the park, in comparison.

But uncertainty still lies ahead. I haven't blogged much about Zack lately, simply because we've hit such calm waters for the last year or so. BUT, we're approaching new milestones, because soon we'll begin the discussion of integrating him into the public school system. I imagine I'll have LOTS to blog about, soon. 

And, scary to say - even though Zack is doing well, the future will always be more uncertain for him. Puberty is reportedly very hard on those with autism. My father's close friend has a thirty year old autistic son. He's bright, witty, social conversant...and a genius. Has literally memorized the Bible. But because of the social anxiety his autism causes (he can't abide by even the simplest changes in his schedule) and his seizures he will never live on his own, or hold down a job. Will that be Zack's future?

Of course, no one knows the future. So we focus on NOW, and every little step Zack has taken, constantly focusing on how far we've come. And most days, that's more than enough to get us through. 

An interesting final note: two years ago, we bought blue lights for our porch, to participate in Light it Up Blue. I meant to take them down and never did. My excuse then was that they looked cool.

Now, in retrospect, it's incredibly important. For those who don't have a loved one suffering from autism, Light it Up Blue happens once a year, and Autism Awareness Month happens one month in the year. For those like us?

Autism Awareness happens every day.

Visit Light it Up Blue, see how you can be a part of things. Local folks, support non-profit organizations like The Magic Paintbrush, which does so much to service this and other special needs populations.