July 23, 2012
It’s what I like to call “Disney time” in my household, what with Justin happily ensconced in warm, soapy bathwater, and my second son wrapped in his cocoon of a Thomas towel perusing reading material in his bedroom. I slosh sudsless liquid once again over Justin’s head and back, and watch rivulets of water stream down his body as he responds with sounds I know from long experience mean he’s happy.
I reach once more for the bucket and aim it toward my eldest’s frothy locks, and practically jump out of my skin as Zach rushes in and shouts “I’M HAPPY TO BE ME!”, then departs as quickly as he entered. When my heart has settled once more in my chest cavity I turn to the sound of Justin’s laughter, because as usual he’s found Zach’s antics hilarious, and I smile.
Looks like me and my husband are doing something right after all.
It takes me a minute to calm Justin down enough to complete our bath ritual, and after I do I rotely complete our combined tasks, and contemplate what just occurred. Zach often pronounces things of great import out of the blue, claiming he will indeed one day have his own babies (one of which will be named Hellspoor, or at least that’s the closest interpretation I have), that transformers have feelings too (which was news to me), and that Justin told him it was okay for him to take his toy (ah, the lying begins…).
I’m certainly not stunned by his admission, for he generally sports a happy demeanor, and is even learning to self-diffuse in situations that don’t culminate in his getting his own way. He’s made great progress, my boy, although there remain mountains left to conquer, not just because he has autism, but simply because he’s five. Clearly, he’s not fully cooked just yet.
I realize as I encourage Justin to stand so I can envelop him in his favorite ridiculously fluffy Elmo towel that my parenting approach to these two children has been so different in the past few years, so much so that with Zach I often feel I’m a first-time mom. I worry daily that the only fruit or vegetable he’ll ever consume will be bananas. I keep fingers crossed that with the right ratio of reward and demand he’ll temper his impulsivity at school, and one day be awarded the mantle of “good listener” before he can drive.
I hold my breath that he’ll continue to regard his older brother as a fascinating gift, not a bane to his existence. I wish, and this is a big one, that my social butterfly will always find his conversations forays rewarded with dialogue, that he will remember his mommy told him to take breaks in his litanies, and ask some questions too.
It occurs to me that in the past two years, the pivotal focus of my parenting Zach has barely touched on his happiness, because he simply is.
These concerns diverge so much from my raising of Justin that at times I’m hardpressed to find any commonality in their childhoods, to discern the common ground from which I forged my approach to facilitating their growth. With my eldest, there have of course been many varied concerns as well. Said concerns have ranged from potty training and partaking from a food group other than carbs, to hoping he’d stop pinching my arms before I needed a skin graft.
But throughout these ancillary concerns ran the constant thread of worry that plagued most of my waking (and some of my sleeping) thoughts; could the village I’d convened to help my son unearth what I knew was his true self ever prove successful? Most days in his pre-school years I wasn’t tortured by thoughts of him not attending college, having a career, or attracting the right person to complete his soul. Most days, I only had the energy to wonder if he’d ever be predominantly, effortlessly, happy.
It only took about half of his childhood, but he’s finally there.
The truth of it is, that’s what I’ve always resented the most about my sons’ autisms. It wasn’t the burden placed on me and my husband (although, truth be told, that figured in prominently). My predicted diverse arc of my childrens’ collective paths didn’t constantly leave me steaming with rage when I realized their lives might bear almost no resemblance to those of their parents, although at times I have mourned, and continue to mourn this for Justin.
No, my desire to rid them of their disorder, or difference, or disability, however it’s perceived, always stemmed from these facts: in the throes of it, they were miserable, and often inconsolable. Nothing, and I mean nothing, would please either one of them.
My babies suffered. Now, for the most part, they don’t.
Justin abruptly rips me from my reverie by standing and sending his cotton cocoon to the floor, grabbing my hand and hauling me upwards so I can supervise the “brushing of the teeth”. I know I’ll need all my wits about me for about the next twenty minutes, so I shelve my thoughts, make a mental note to revisit them if my short-term memory allows, and I’m able to remember.
He hugs me again, looks deep into my eyes to make me comprehend I should get a move on because he’s tired, and I willingly comply. I hear Zach’s deep belly laugh from his bedroom which signifies the nightly tickle fest has commenced, and I gently secure Justin’s red friend once more so he won’t catch a chill. A SpongeBob toothbrush awaits me, and if I’m lucky later, so will one last thought.
How fortunate I am that at least for now, my children’s happiness is my priority.
July 16, 2012
We reached the height of the ramp leading to the beach, and my smallest son exclaimed at the vista laid out before him of sand, surf, and lifeguards waiting to take him for the ride of his life. He rushed down toward their stand, proclaiming to all who would listen that “he’s going to surf!”. Zach finally stopped in front of their perch, stretched his arms out wide, and informed them that “he’s here”, and ready to go. He was in for the time of his life.
So was every kid with autism who participated in Brick Township’s fifth annual Autism Surfing Day last week.
Dan Santaniello, deputy director of the Department of Parks and Recreation who created the event, saw something similar transpire in Monmouth County, and wanted to offer a commensurate afternoon to children with autism in his home town. Since all the lifeguards involved donated their time, the program does not cut into Brick Township’s budget, an important consideration these days when taking recreation activities into account.
Gary Weitzen, executive director of POAC (Parents of Autistic Children) also located in Brick, has been promoting the event ever since to parents within the community. I found out about it four years ago while on their website and brought Justin, my then five-year-old son with moderate autism, to give surfing a whirl. The activity was not met with a great deal of enthusiasm (understatement of the year), and although we tried on subsequent years, Justin never took to it. Fortunately, he has his love of all things equestrian. We’ll leave the waves to his little brother.
And truly, the ocean was his to conquer. He thrust on his life jacket with an air of total confidence, took the hand of one of his new friends, and headed down to the tide’s ebb and flow with ease. He only attempted to master the waves once, but for the first time he managed to stand for a few seconds, moments which to his mom seemed like a glorious eternity. Zach willingly complied with directions to lay back down and ride this one in, and to his delight and mine, he did.
He even took the guys up on their subsequent offer to ride their wave runner. This kid is fearless.
All too soon it was time to head home for dinner, but I know my son left with a sense of pride and accomplishment (and a stunning medal to boot). After attempting to make friends with everyone on the beach we gathered up our gear, and headed back to the car. Through the grace of Brick Parks and Recreation and POAC Autism Services he’s pushed himself to accomplish something new, and has mastered a new skill, one I hope will continue to bring him joy and pride in the years to come.
For information on activities for children with autism, check out POAC’s website at: www.poac.net
July 9, 2012
“Come on Justin, we’re going to horseback riding camp!” I say to the retreating back of my oldest child, in the hopes I’ll lure him away from his DVD player and get him into the car. He stops dead in his tracks and looks at me with a huge grin on his face, then makes a beeline for the door, the contraption he uses to view every Disney movie ever made completely forgotten.
I grab hold of the three huge bags necessary to sustain him for four hours every day this week, and follow closely behind him as he exits the house. He is gleeful as he enters the car, and I’m hoping he remains this way when he realizes we’re not going to the camp he’s been to for years, but the new one I showed him a few weeks ago. I strap him in and turn on the top 40 hits, and he’s immediately moving to the music, happy.
His momma’s hoping he stays that way.
We quickly reach our destination, and Justin looks a bit confused, but still happy with my plan. I have to grab his wrist tightly to keep him from running right into the barn, and with horses and cars as potential obstacles I keep close to him. He sees the woman who is going to care for him for the week and runs excitedly up to her, then turns and pushes me away.
I tell his lovely assistant that this unfortunately is a new method of communication we’re trying to extinguish (in Justin’s mind I imagine he’s thinking, “out with the old, in with the new”), and I follow behind them with gear in tow, as his aide has all she can handle with my impulsive son.
We sequester the items necessary for his survival (lunch, extra clothes, and a million juices and snacks) and I say goodbye to my boy, who gives me the briefest of glances, and looks to his “woman du jour” as if to say “what ya got for me?”. I remind his caretaker that my mom will pick him up today and walk toward my car, happy for Justin, and mostly relieved. There’s no guarantee he’ll like something new, and frankly camp is a luxury, not a guarantee like summer school.
I exhale, and realize just how much I want him to have some “typical” kid experiences in the summer, so that his childhood will mirror mine in just the slightest way. I throw a silent plea to the universe that the rest of his stay here is as successful as his first drop-off.
And a few days in, it still is.
He loves his new camp. Justin is thriving on new challenges, is learning grooming techniques that I hope he’ll carry with him to adulthood, and forging new connections with strangers. The word is he’s wonderful on the horses, shows a tepid reaction to arts and crafts (that hasn’t changed since toddlerhood), and has a smile for everyone.
On the second day of camp he even asked for his mommy for the first time ever on his iPad. Seems as if even I get something out of horse camp.
He’s got a few days left to go, but I’m confident we’ve discovered a new venue that will meet his needs, and make him happy to boot. I couldn’t be happier with the staff at Celtic Charms in Howell, NJ, who have been so kind and responsive to all of Justin’s needs as well as my concerns about attempting a new camp after so many years. They are a non-profit organization which serves individuals with physical and emotional disabilities, and their goal is to teach all components of horseback riding to their charges in a fun and safe atmosphere. Celtic Charms serves the needs of both individuals, and small groups.
Many thanks to all involved in making this program a success for Justin!
Celtic Charms Therapeutic Horse Farm
671 Fort Plains Road
Howell, NJ 07731
July 1, 2012
It was just a utensil, lying innocuously next to my eldest son’s plate, generally ignored and unwanted. It usually acts as the forlorn mate to the small fork my youngest has used with gusto for about a year now, the stainless steel that replaced the tiny Transformer prongs Zach was loathe to abandon. My husband and I have spent years, (seems like longer,) attempting to get Justin to use it independently. To date, this particular tool has only been utilized when we’ve conducted the ABA dance of work and reward, or in this case, “use your fork Justin, and you get something better from Mommy’s plate.”
Clearly, it’s not tragic if he doesn’t use it regularly. Frankly I’m just grateful that he eats at all, as we’ve had that issue in the not-too-distant past as well. It’s a nicety, like blowing his nose into a tissue and not his sleeve (we’ve mostly conquered that one, thank goodness), but it’s one I’d like him to acquire, since I won’t always be there to cajole him into it. I’d pretty much given up on him using it without a prompt, although I’ve not let go of him incorporating it into his mealtime manners.
There are times however when phones ring, or five-year-old little brothers are particularly demanding, and I just can’t sit with him to insist. Since I was about to depart for an evening of fun (!), tonight was one of those evenings where my head was far more oriented toward charging iPads and signing daily notes than what was transpiring over the kids’ jungle-themed plates. Just as I was washing up perhaps the twenty-fifth dish of the meal (perhaps a slight exaggeration) my husband grasped my arm and pulled me behind the table and Justin, then stage-whispered, “Look!”.
Since I still had at least another fifty things to clean before my exit I gave him a look that said “this better be good”, swung around, and got up on tip-toe to see what miracle had been unveiled chez McCafferty. And miracle it was, as I witnessed my son wielding a fork with diligence and accuracy as he twirled his spaghetti somewhat successfully on a grown-up fork, something he could only have seen me or Zach do on pasta night.
Not only was he using a utensil, he was imitating his sibling. I immediately made a dash for my camera.
Quite often with even a two-foot space between me and my digital, I’m too late to the party. My boy pushes his plate away before I can even take my shot, and begins making his way toward the sink. Jeff informs me he lifted that three-pronged staple to his mouth at least a half-dozen times before abandoning the meal, and he did it without a single prompt, nudge, or nag. We haven’t witnessed a miracle. He isn’t speaking in full sentences, eager to join baseball games with the neighborhood boys, or abandoning the light-up/musical/perseverative toys he’s adored since infancy. This is nothing of that magnitude.
No, it’s just a slight alteration in a routine, one that might not be repeated. But it’s one more tiny step toward some state of independence that I always envision for my son. Quite recently it follows initiating conversation on his iPad, and allowing his sibling’s monster-scaring work-of-art to remain gracing the walls of his room. This minor leap of progress is preceded by my boy recently dressing himself with ease, and gently resting his hand on the top of his brother’s head during story-time. Tiny moments, so easily missed if you’re not looking for them.
Of course, I always am, because after so many years of struggle, they mean everything.