January 26, 2013

Say Uncle

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , at 11:35 am by autismmommytherapist

Holidays 2011 043

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.

March 28, 2012

A Friend in Deed

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 8:35 am by autismmommytherapist

I hear “Look guys, Zachary’s home!” through my open window as I round the corner into my driveway, and I glance back in my rearview mirror to see my smallest son waving maniacally at our young neighbor. I turn off the ignition, and hear the click! of the seatbelt as it is released from its constraints. As I turn around I see my boy’s face plastered to the window, seemingly mesmerized by the tableau before him. It’s a simple picture really- just three boys, a net, and a ball, on the first afternoon to grant us the gift of spring. It’s nothing special.

Except to Zachary, it is.

I walk around to the back of the car, undo the childproof locks, and set him free. My lovely neighbor’s equally lovely son bounds over to the car and asks Zach if he’d like to play, and my son’s resounding “YES!!!” can be heard up and down the block. The other two boys who don’t know him quite as well are good sports, patient as can be with a five to seven-year age difference, which is monumental at this point in their lives. Zach is beside himself as they take turns hoping for hoop, and alternately trying to send the ball into outer space.

That was the twelve-year-old’s idea.

All too soon my neighbor’s accomplices are called to dinner, but Zach’s friend wants him to stay. My son looks at me with what I call his “pleading/exuberant” face, a countenance which cannot be denied. I realize there are tears fighting for passage from my own face, which surprises me (must be a peri-menopause thing). I tell the boys of course they can keep playing until I have to make dinner, and Zach lets out a “WHOOPEE!” that makes me smile as he charges after the ball. Then I ponder those tears for a second, and realize they’re justified.

What I’m witnessing is what I’d always wished for my boys to have for themselves.

As I write these words I realize that even had they been neurotypical, they might not have gotten along, might in fact have been at loggerheads throughout their childhoods. In my own birth family, there is a four-year divide separating me and my little brother. Between that gap, our differing genders, and his continued reluctance to participate in anything “girly”, we never truly bonded until we became adults. Even if Justin was more like Zach in nature there is no guarantee they would have gotten along, shared toys with each other, or participated in one another’s pretend play.

After being ignored dozens of times over the past few years, Zach doesn’t ask Justin to engage in his wildly constructed scenarios anymore. I feel both a sense of relief and a touch of heartbreak every time he assigns roles to his parents, and not to his sibling. Still, they have their bedtime ritual, and their shared love of movies.

As I am fond of saying, it is what it is.

I drag myself away from my thoughts so I can fully witness my son’s joy. I am struck by the thought that what is playing out before me is so effortless, so incredibly natural. At times the routines and rituals we’ve created for the boys seem so forced compared to this, the simple give-and-take of two children engaged in a childhood staple.

I watch as Zach turns down a gratuitous offer to take an extra shot because it’s not his turn”, and my heart swells with pride as he hands the ball over to his friend, albeit a bit reluctantly. It hits me that although he struggles in various areas of his life, for him this social interchange is simple. Sure, he’ll need to reign in his worship of dinosaurs a bit if he wants to keep his friends. But for the past twenty minutes he hasn’t struggled, looked to me for cues, or needed assistance in any way.

For Zach, this moment is easy.

I tell the boys to stay on the driveway so I can retrieve my phone from my car and call their father to come down from his office, as dinner needs to be made, and my five-year-old needs constant street supervision. My husband arrives just as my son breaks for the front door to retrieve his own child-sized basketball hoop for “double play”, and I laugh, because he’s never content to keep things status quo for long.

I ask Zach’s companion if he’ll wait for him and he says “sure”, happy to comply. I head for home and chicken cutlets, almost tripping over my pre-schooler as he drags worn plastic on smooth tarmac. I smile as my spouse rolls his eyes, and before I devote my thoughts to our impending meal I throw one request out to the universe at large.

May his quest for friendship always remain this simple.

September 19, 2011

Still in the Woods

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 10:21 am by autismmommytherapist

He’s a blur as he races past me, my whirling dervish of a youngest son, filled to the brim with unrelentless energy despite the fact we’ve just returned home from an hour-long sojourn at a local playground. “YOU CAN’T CATCH ME!” he yells with his outside voice in our very inside family room, and he is literally correct, as his middle-aged mama is no longer fast enough to corral him unless he wants to be caught. I tell him for the fifth (or was it thousandth) time not to run in the house as he’ll get hurt, and as he slides behind the curtain that blocks off access to our garage and laundry room I remind him not to pull on said curtain, as he attempts to hide from me.

I see the slight vestige of a sly grin on his face as he disappears, and as I make my way to the kitchen to deposit those dirty dishes that seem to multiply freely of their own accord, I hear it. RIP!!! followed closely by CRASH!!!, and I turn in time to witness our thick denim curtain, iron rod, and holders with pointy edges tear from the wall, and fall inches in front of my son’s face. A loud “Uh Oh!” is quickly followed by my asking my four-year-old pointlessly how many times I’ve told him not to grab that particular fabric, to which he replies, “I’m sorry Mom, my brain made me do it.”

I think to myself, “Thanks hon. Now how exactly do I respond to THAT?”

He’s absolutely right of course, on so many different levels, and that’s the main issue with his type of autism that we all seem to be working on, from his parents, to his sitter, to his teachers. He often (like many other four-year-olds I’m told) lacks that initial impulse control, that ability to derive right from wrong in certain situations, sometimes ones that really matter. More than his anxieties or need for certain rituals, this lack of control is what worries me the most.

Since he inherited the “tall genes” from his father he already looks older than he is, and I find people in our community to be shocked when I tell them he’s still in pre-k, see them often sporting a look that says, “oh, THAT’S why” on their faces after hearing my response. He looks and sounds completely “typical”, and that fact, coupled with him appearing older than he really is, already puts him at a disadvantage. I don’t want people to regard him as “bad”. I don’t want him to think he’s “bad”. So his next comment just crawls into my soul and takes up residence there, and I know it’s not going to relocate for a long, long, time.

“Mommy, my brain is bad”. Crap.

I sit down on the floor and cuddle him close to me, and we engage in a long discussion about good and bad choices and brains, and take a brief detour to reflect upon the demise of dinosaurs. We practice counting to three before making a choice, a strategy I’m pretty sure won’t hold up in court. He says when that pesky organ of his tries to lead him astray he’ll respond with “No brain, bad choice, I WON’T do it!”, and he ‘ll instead take the absolute opposite path. We practice different scenarios, both at school and at home, all with my youngest reigning victorious, vanquishing that body part hell-bent on leading him into temptation.

“I want to be good, Mom” he sighs softly into my shoulder, and my heart breaks open just a little more, an organ of my own that has just begun to repair. I ask him to look at me and tell him he is my very good boy, and that making good choices is one of the hardest things in life, that even adults struggle to do the right thing, including (definitely including), his mama. He smiles and slides off of my lap to find that book on dinosaurs, the one with most of the answers.

I wish it were that simple to find all the answers for him.

I am reminded, usually on a daily basis, that despite his ability to speak, remedy his mistakes, and socialize with anything alive, that we still have a long way to go with helping him walk in a more “typical” world. What with Justin’s transformation into a mostly compliant, happy-go-lucky child, I am often struck by the irony that my far more autistic offspring is frequently the easier one to manage. My youngest will have to navigate the murky waters of friendships, learn to engage in dialogue not solely centered on his interests, and eventually work his way to remaining still for more than three consecutive minutes. He has a long way to go as he matures, and I’m so grateful he has what I like to call his “tribe” to help him get there.

In the meantime, we’re not out of the woods yet.