February 10, 2014

Back in the Saddle

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 4:15 pm by autismmommytherapist

J Horse 1

The call came as I was preparing dinner, straining gluten-free spaghetti through a colander for me and my youngest boy. I have to pause a conversation about Lego Star Wars to pick up the phone, and as I glance down I see it’s my mom’s cell, so I press “talk.”

After a brief greeting I ask her how Justin’s horseback riding lesson went, and I hear a slight pause, which my imagination rapidly fills in for me. I immediately worry that Justin doesn’t like this new stable, the one with the trainer who I’m hoping will get him to the Special Olympics this fall. My thoughts are no more dire than that.

What my mom says instead takes my breath away momentarily, shocking me as this has never occurred in the almost six years Justin has been riding. “He fell off the horse hon, but he’s okay” my mom reassures me, and then continues with “and damned if he didn’t want to get right back on.”

Knowing my boy, that doesn’t surprise me at all.

Apparently Justin’s horse was startled by another equine friend in the ring, and fortunately my son slid from the saddle right into the waiting hands of his trainer, with only the indignity of his bottom hitting the ground. In the seconds my mom contemplated whether she should risk going inside or not she said he simply stood up, grabbed his trainer’s hand and pulled her toward the mounting block. With the other hand he pointed straight at his horse.

My boy doesn’t need to talk to make himself understood.

Once more I make sure he’s okay, hear his excited “eeeeee” in the background as I wrap up my conversation with my mom so Zach and I can eat our carbs. I tell my youngest that Justin fell off his horse for the first time but wanted to get right back on.  Zach responds that his brother is very brave, and I smile at him in agreement, telling Zach that I think he shares this same trait with his sibling. There is a request for the parmesan cheese I’ve forgotten to put on the table, and as I make my way to the refrigerator I am hit by the magnitude of what has just happened. My son has fallen off a horse. He didn’t cry, fuss, or try to leave. Instead, he got right back in the saddle.

The truth is, that’s what this family does every single day.

I have two children with autism, one severe, one mildly affected. To my everlasting pride (and relief) they are both safe, productive, and happy. I attribute this bounty in part to great teachers and aides, excellent therapists, an involved family, and of course, time and maturity. All of these ingredients have coalesced into a recipe for success, an outcome I am grateful for every day.

But if I’m perfectly honest, it’s falling down and getting right back up again that has been perhaps the most important ingredient in this family, a trait I’m proud to say we all share. I’ve seen this occur after time with Justin, whether it was watching him learn how to ride a bike, conquer an educational game on the computer, or, and most difficult for him, see him manipulate his mouth to form coveted consonants. This kid never gives up, and I don’t believe it’s a trait one can teach. I believe in him it’s innate, a force of nature which propels him on in all his endeavors, one I’m very grateful he inherited from his obstinate and purpose-filled parents.

Truly, the apple doesn’t fall far from the tree.

Soon I am being pestered for cookies from Justin’s equally brave brother, and my reverie is broken as I search for more carbs in our pantry. I’m asked often how our family has made things work, how we’ve managed to create a palatable existence despite the demands of an often difficult disorder. I am loathe to give generic advice to families as everyone’s situation is so different, but here is one universal truth I feel comfortable passing along. No matter what issue you’re facing, if you fall down from the weight of it try your best to brush yourself off, and keep on going. It is the one constant that has always worked for this family.

And my most heartfelt wish is that it works for you too.

February 2, 2013

Bond of Brothers

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:21 am by autismmommytherapist

Xmas 2012 005

“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

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.

January 1, 2013

Dear George Lucas

Posted in AMT's Faves, Fun Stuff, Life's Little Moments tagged , , , , , , , , , , , at 12:08 pm by autismmommytherapist

star wars

Dear Mr. Lucas,

First of all, let me wish you the happiest of new years (I know you’ve been waiting to hear from me), with hopefully much peace and prosperity coming your way in the year to come. It may seem a little strange to hear from a housewife in Jersey who has absolutely no Hollywood connections, but in the event your assistant’s assistant’s assistant ever puts this into your hands, I felt I simply had to write. You see, over the past three days, the McCafferty family has been celebrating “moviepalooza”, watching episodes four through six of the Star Wars movies (sorry sir, the best ones). That is to say, all of us watched them.

I mean, all four of us.

Together.

No interruptions.

All the way from “Dah dah dah DAH da” to the credits.

I’m sure this doesn’t sound in any way miraculous to you, as apparently families all over the world watch movies together, but in this household, it is indeed worth taking note of the occasion. You see, my oldest son has moderate to severe autism, and part of his perseveration is to play the same clip of a movie over and over (and over) again, until frankly the film loses all meaning and anyone nearby who hasn’t become immune to the process over the years wants to pull out their hair.

It’s usually not much better in the theater either. Generally, getting Justin to remain seated for at least half the film is a Herculean effort requiring lots of popcorn, a lanyard, and begging. In the past few years I’ve had to walk out in the middle of countless movies, without knowing for sure what would happen to those fetching gnomes in Gnomeo and Juliette or if Arthur would save Christmas for us all (fingers were crossed on that one). I usually have to take Zach to get to the end, or wait until the title comes out on DVD.

Have I mentioned that I’m not really that patient a person?

I digress. Anyway, over the last three days I’ve witnessed my son snuggled up with us on the couch, following the storyline with fascination, rocking out to the light saber fights, and seemingly fascinated by Jabba the Hut (my husband particularly likes the scenes with Carrie Fisher and Jabba, can’t imagine why). As a family, we pretty much have just bowling and Great Adventure as events all of us can share together, and depending on Justin’s mood, even bowling can be dicey. Those six hours, where occasionally he even looked over to me with wonder in his face and smiled, are pretty big.

I’m still smiling back.

I’m not sure if this is the start of something new, or just a fluke not to be repeated. We’ll be borrowing the first three episodes of Star Wars for a repeat marathon soon. And as long as Justin is captivated by those special effects and those intense battles, and can ignore Jar-Jar Binks, I think we may be okay.

We’ll have to see on that last one.

On that note, I’ll end this missive, and just say thanks. Thanks for dreaming up characters and plotlines still as captivating to my son now as they were to me thirty-five years ago (dear God), when I was a ten-year-old brat who said she never wanted to see a science fiction movie.

Mark Hamill and Harrison Ford (and their collective “yumminess”) changed that forever.

So, thanks Mr. Lucas. Thanks, and from one cinephile to another, happy new year.