October 21, 2014

The Land of Make-Believe

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:48 am by autismmommytherapist

Disney and Halloween 2013 104

My eldest son breezed through the trick-or-treating partitions at Great Adventure, slowing down only to snap up a bag of candy he will forego and his mother will sample later. We’ve been participants in this activity for several years now, and in general my son has just tolerated the event, rushing past the Looney Tunes characters as if they were so yesterday, whipping by hands outstretched for high-fives or arms elongated for hugs.

Today however he slows down slightly at Foghorn Leghorn, waits patiently for a family to acquire their photo op, and approaches the costumed employee. He stops, stares into his “eyes,” takes a tentative hand and strokes Foghorn’s bill, never breaking eye contact with his newfound friend.

And as I stand and witness his newfound interest, I just can’t help but wonder what’s going through his head.

When Justin was diagnosed almost a decade ago with autism, the pronouncements for his life trajectory were very dour, often completely devoid of hope. Back when he first earned the autistic label I spent hours trolling the internet to acquire any information that might help alleviate the symptoms that seemed to cause him so much distress, and in my research I came upon many of these sites and blogs.

I found them so depressing I soon avoided them altogether, instead devoting my time to ABA manuals and some memoirs which helped shape my perspective on my son’s future, books which enabled me to entertain the possibility that we could indeed be a happy family even with autism in our midst.

No matter where I turned however much of the literature I read harped upon the autistic person’s lack of imagination, their avoidance of any type of pretend play. I can actually remember questioning whether or not we should take Justin to see Santa, balancing the sensory onslaught that so plagued my son when he was younger against the opportunity to visit with this childhood icon.

The childhood icon always won, and most of the time my son seemed to enjoy the event. As Jeff and I would snap away I always spent a few seconds wondering what he thought of sitting on a big bearded man’s lap- did he connect mall Santa with Christmas and toys, or was this just one more crazy thing his mother insisted he try to see if he liked it.

Trust me, back in the day when I was desperate for any activity with which to entice my boy, there were plenty of those events too.

Justin’s much older now than that perpetually cranky toddler, far more apt to accept and even embrace his mother’s outings, some of which I often wonder if he tolerates simply because he loves me. I cut my musings short and watch as my son lays both hands on his new friend’s face, gently angling it down to his eye level, then regard his giant grin. In that moment, I wish I could ask him what he feels. I want to ask him if he understands this is just make-believe, that there’s probably a hungry teenager in that costume.

I want to know if he’s truly having fun.

Soon the eye-gazing concludes, and the offer of a hug is rebuffed by Justin, as is his right. My son affords me the merest flicker of eye contact, then brushes by me in a fast-paced attempt at egress. The truth is, I probably will never get to have a conversation with him where I can ascertain his understanding of the imaginary, of the land of make-believe. He may not think that way, or he may, and I might never know it.

But as I catch up to him at barrier’s end he stops and pulls me into a brief embrace, squeezed my elbows as he is wont to do, and gives me his luminous smile. And in that moment it is irrelevant if he understands the nuances of the fabled, the contrived. At the end of the day only one thing matters- that he’s happy with the life he’s been given.

And at this moment, as he grabs my hand to propel me once again onto his path, I can gratefully say he is.

 

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September 29, 2014

A Better Place

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 1:46 pm by autismmommytherapist

055

A few weeks ago I had the honor of speaking at the kickoff for the Autism Speaks Philadelphia walk, and I thought I’d share my words from that evening with all of you. It was a great night and I met many amazing families. Thanks and enjoy!

Good evening, my name is Kimberlee McCafferty and I’m so honored Autism Speaks invited me to talk to you tonight. As a teacher I’m used to speaking to classrooms of ten-year-olds, so if I seem a bit nervous, please bear with me.

My husband Jeff and I are parents to two beautiful boys, both of whom have autism. Our youngest, Zachary, is seven and has informed me he’d like to be president one day, so please vote for him around 2048. Our oldest, Justin, is eleven and has just started speaking his first words, and forgive me for bragging, but his is one of the most affectionate souls to ever grace this earth, plus he gives the best hugs ever. Jeff and I consider ourselves the luckiest parents on the planet.

Our autism odyssey officially began in Washington DC ten years ago when Justin was diagnosed at seventeen months, but I feel it truly began when he was half a year old and started spinning everything he could get his hands upon. We were initially told his language delays just mirrored those of his father and frankly every male relative he has on both sides of his family tree, but in my soul I knew there was more.

I knew he was different. Different, but never less.

Eventually my concerns were realized when our pediatrician informed me my child had a neurological disorder by thrusting several miscopied articles with “autism” in the title into my shaking hands, then ushered me out of the room with a grim “good luck” and a hastily scrawled phone number for a developmental pediatrician.

I went home, put my son in his exersaucer, called my husband and mother, and cried. Over the next few months I shelved my grief for the “typical life” I thought we’d lead and began to embrace the one we have today.

To say this was both the most difficult and most important choice of my life would be the understatement of the last century.

Even though I’d been a teacher for a dozen years I knew very little about autism, so I did what most parents do in our situation. I went on the internet.

Big mistake.

The internet, and chat groups, told me a lot of things about autism. At the time, the concensus among many parents, professionals, and autism organizations was that if my son didn’t speak by age seven he never would. They told me my second son’s regressive autism would likely end up more severe than my first son’s type. The web told me my youngest might never regain the light in his eyes that seemed permanently extinguished following two back-to-back illnesses which seemed to claim his soul at twenty months. I was told I was only a good mother if I searched exhaustively for a cure. I was told I was only a good mother if I completely accepted my child for who he was and didn’t try to change a thing. The internet spoke of isolation, of the loss of friends. It regaled me with stories of tantrums and insomnia.

Okay, over the past decade we have battled with those last two.

Finally, stubborn woman that I am, I decided I no longer wanted to be told anything, that instead I wanted to learn.

And since ABA was not provided under Virginia’s Early Intervention program in 2004 I got trained to deliver thirty hours a week of therapy to my son for eighteen months.

By the way, I do not recommend being your child’s primary therapist if you want him to like you or you wish to retain any last vestiges of your sanity.
But far more than the dance of reward and demand of ABA, I learned how to reframe my life.

I learned, perhaps most importantly, to take care of myself and to thank God for Grandma’s babysitting stints which kept my marriage alive (hi honey!).

I learned the web was right about losing some friends; I also learned to shamelessly replace them by making friends with all of my sons’ therapists.

I learned to revel in the timbre of Justin’s “EEE” resounding throughout his school when he sees me on days I pick him up early.

I learned to overcome my kitchen phobia to make gluten-free chicken nuggets from scratch (and hated every minute of it).

I learned Zach’s bravery has no bounds, for when his dad and I told him he and a lot of very famous and bright people had autism he simply jumped up and down and was so proud to be autistic.

Then he asked for more Cheetos.

I learned that autistic people not feeling empathy is, well, crap, as evidenced by Zach wanting to save every bug no matter how small that lands in our pool.

I learned that not only were the professionals wrong about Justin not talking, but that my eldest, severely autistic son would be reading aloud his first words to me at eleven (and he’s so proud of himself).

I learned that my beautiful, brilliant often messy children shatter my expectations of them daily.

I learned never to give up trying to give them the best lives, of their own unique design, possible.

I learned, and this one was a big one for me, how to ask for help. Autism Speaks has personally played a huge role in assisting my family. They’ve helped get legislation passed in our state for autism services so Jeff and I wouldn’t go broke, and I’ve often turned to their wonderful tool kits in moments of semi or full desperation.

My two favorite ways they’ve assisted us are how we found a developmental pediatrician through the Autism Speaks/Autism Treatment Network at CHOP who could finally help us with medications, and my personal favorite, the nurse who made house calls in the study we enrolled in through the ATN to help quell Zach’s insomnia.

Did I mention that last one was my favorite?

My husband, and by extension my boys, are so grateful Autism Speaks exists. In an effort to give back tonight I’ll be donating 100% of the money raised from sales of my memoir, Raising Autism, a book about the boys and our life together. Even if you don’t want to buy the book, please stop by and say hi. We have bookmarks and they’re free.

Finally, our family, initially forged in fire, has come to a place of acceptance, and gratitude. We truly love our lives. I want to thank you for your time tonight, and wish all of you and yours happiness and peace, and a successful walk on November 2nd.

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March 17, 2014

Savor the Moment

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 1:06 pm by autismmommytherapist

Disney and Halloween 2013 184

I hear Justin’s yellow chariot about a block before it reaches my driveway, and make a mental note to tell his bus driver to check the brakes.  It’s freezing outside (as usual this winter), so I wrap my warm woolen scarf tightly around my neck before I shove Cosmo into my coat pocket and step out of the warm cocoon of my car.  I navigate pockets of the relentless ice plaguing my driveway and follow the carefully carved path my husband has created for us, and I hear my son well before the bus stops.

Within moments he is greeting me at the top of the steps with his aide close behind.  As usual I thank his chauffeurs and make room for him to descend, grabbing his backpack as he moves from towering over me to mere inches from my diminutive height.  I smile and say “Hi Justin” as I have done for years, but with perhaps more emphasis as I am trying to generalize a reciprocal greeting his speech therapist is attempting to teach him at school.

I anticipate a sofly emitted “hi” or a mad dash for the door for his coveted soft pretzel, but today is different.  Today my severely autistic son looks me straight in the eye, and with a hint of a smile says “Hi Mommy,” then grabs my scarf and leans in to plant a big kiss right on my lips.  It is the first time he has ever put two words together for me with or without being prompted.

Too soon the moment is over, then there’s still the mad dash for those carbs.  He is so my child.

We’re starting to elicit a few words from Justin after ten long years of speech therapy, ABA rewards, and my working with him whenever possible.  Over the last few months we’ve begun to hear coveted consonants such as “t” and “p,” sounds initially evoked only within the confines of his school or therapist’s home, now reproduced on demand for me.  We’re slowly building a vocabulary me and my boy, one which even includes saying “pop” as a fill-in from his favorite Eric Carle creation.

It is thrilling to hear these words and word approximations, and I know as soon as we’ve shed shoes and scarves I’ll yell our triumph to my husband upstairs, and run to the phone to call my mom.  There will be an email chaser to his private speech therapist and to the school speech therapist who has been working so diligently on this skill, taking the time to film me greeting my son on his ipad, and carefully rewarding his attempts with my homemade chocolate chip cookies that defy my usual ineptness with all things kitchen-related.

In a few moments I’ll be besieged by requests for juice and snacks from both of my children, will find myself tripping over hats, coats and mittens as I navigate our narrow hallway.  There will be the daily homework struggle/bribe with my youngest, voluminous paperwork from their respective schools to pore over, lunchboxes to unpack.  In short, the McCafferty clan will soon be immersed in its daily organized chaos.

But I won’t allow it to happen before I take the time to savor this moment.

There have been some really difficult periods in this household.  I have two boys with autism, and both have undergone months or even years where silence ruled our world, gastrointestinal distress claimed the day, and sleep was an unreachable luxury.  We’ve also endured periods where my eldest expressed his emotions primarily through aggression, with medication, therapy, and love incapable of providing any respite.

In the past there have been weeks where I’ve been struggling to make it through the end of the hour, much less the day at hand.  Throughout these challenging times I’ve generally been able to invoke my mantra of “This too shall pass,” one of my beloved grandma’s favorite maxims that for our lives at least, seems to hold true.  Those four words have been the touchstone that have help me transcend our troubles, minister to my boys, trade frustration for an embrace.

I guess you could say those words are my personal hashtag.

We go through cycles of frustration here, but what I’m finally beginning to remember as we now rarely descend into darkness that for us, these difficulties always pass.  Thankfully, the stomach issues which plagued both boys have all but disappeared.  The all-elusive sleep I longed for both me and my sons almost always graces our presence nightly, bringing much-needed rest and respite from the day.  Through a variety of strategies, and perhaps mostly maturity, my eldest son has learned to quell his frustrations, now resorts to his iPad or even a word or two to get his needs met.

And yes, despite years where all of our queries met our son with silence, we are finally being graced with the mecca of the spoken word.

I hear my youngest bellow for “juice!” and realize my moment for contemplation is now on hold, to be shelved and savored for later.  Soon pretzels will be distributed, beverages will be poured, and the minutiae of a day away discussed.  My eldest will escape upstairs to his coveted computer, and I’ll tussle with my youngest about exchanging jeans for his karate outfit.  Our life, “normal” as we know it, will take over.

But I promise myself this before I am swept up.  I have goals for my sons, some of which like speech have seemed impossible to achieve, unattainable brass rings.  My boys constantly shatter my preconceptions of what they can achieve, resist any limitations I might unconsciously impose upon them.  They will continue to learn.  They will continue to grow. On their own paths and in their own time, progress will continue to be made.

And each and every time they achieve success, their momma must remember to savor the moment.

July 6, 2013

Unlucky Thirteen

Posted in My Take on Autism tagged , , , , , , , at 10:22 am by autismmommytherapist

Nine years ago this fall, after several lovely Virginia Early Intervention providers had assessed my small son, I sat down with my mother at my dining room table and eagerly awaited their verdict on how many hours and types of therapies my recently diagnosed autistic toddler would soon receive at their hands.
After half an hour of regaling me with just how developmentally delayed my child was in all areas, they gave me their verdict on how much help I could expect, help I was happy to pay for, help I was desperate to accept.

The lovely women who had worked with my son for the better part of an afternoon offered me eight hours a month. Every autism expert in the nation recommended at least eighty. They held out an olive branch of six hours of occupational therapy, and two hours of speech.

ABA, or Applied Behavioral Analysis, which addresses the core deficits of autism and is exactly what my son so desperately required, was not on the table. Unlike New Jersey, in 2004 Virginia’s Early Intervention agency did not recognize a specific diagnosis of autism in their clients, and as such was not required to provide the instruction my son so dearly required.

I remember clear as day looking at my stunned mother across the table, putting my head in my hands, and wishing with all my heart I could just cry my guts out.

In that moment I knew my entire world had changed. Reality hit me like a tidal wave- I would have to get trained in the core therapies of autism, and deliver thirty to thirty-five hours a week of said therapy to my own autistic toddler. My husband’s insurance provided no respite from the costs, and even with me acting as his primary therapist we still needed a Board Certified Behavior Analyst to oversee his program and train me and any other therapists we hired, an out-of-pocket expense of over $2,000 per month.

Although Fairfax County Public Schools generously took autistic students the fall after they turned two I’d begun to hear unsettling things about my son’s future program, namely that he’d have no hope of ever having a one-to-one aide, an aspect of his education I felt strongly would be integral to his ever being an academic child. In my heart I wasn’t certain Justin should start before he was three-and-a-half in that environment, or if he should begin there at all.

I recall realizing even if I could master the intricacies of ABA and deliver excellent services to my son that I might not be able to keep up that pace for two years, and that he might receive even less intense instruction than he did at home when he finally entered a school program. I realized I would have to make my temporary leave of absence from teaching permanent, would have to perhaps forever put on hold my dreams of eventually becoming a school administrator.

I understood that despite having built a great life in this Washington, DC suburb over the past decade-and-a-half that our family would have to move, that our adopted state could not meet our child’s needs in either the short or the long run. I swallowed, and accepted that my current life, as I knew it, was over.

I also knew I was damn lucky I could teach him, and that we had the extravagant luxury of being able to relocate. I am certain most families do not.

I’ve never forgotten that day, both being distraught over the lack of services that were offered to me, and my even greater despair at the fact that our insurance would not cover us at all if we sought private providers for therapy. I’ve continued to follow Virginia’s journey over the last almost decade since we moved back to New Jersey, and was so grateful to see that Governor Bob McDonnell signed into HB-1106 into law, a bill which assures that providers of Applied Behavior Analysis (ABA) are covered under the law.

Even if Early Intervention services have not improved since then, this document will bring much needed relief to thousands of families, many of whom may not be as lucky as ours was. My heart rejoiced for them, even as my tired soul remembered those long days, weeks, months when I was my son’s primary provider, hoping every day I was giving him what he needed, both as his mom, and as his teacher.

I look at the mostly happy boy he is almost a decade later, and I believe I played a part in this outcome. I also believe no parent should ever have to do this for their own child.

According to the National Conference of State Legislatures, thirty-seven states and the District of Columbia now have laws related to autism and insurance coverage. This is a vast improvement from the dark ages of autism of sixty years ago, even a major improvement since we began our personal journey a decade past. Yet, thirteen states in our union have yet to ease the burden for families whose days are often extremely burdened by the disorder.

Children in thirteen states may still be denied required therapies because their parents can’t afford to hire outside providers to deliver core services their sons and daughters may require to communicate, to quell their behaviors, or simply to be happy and productive in a world which they must invariably find incredibly challenging. My heart goes out to all families still struggling to cover the often astronomical costs of autism, every single one.

Thirteen states. It is far too many. To those advocates fighting every day to change this statistic, I offer you continued hope, and courage.

May every single one of you win.

January 31, 2012

POAC Gala 2012, a Call for Contributions

Posted in Life's Little Moments tagged , , , , , , , , , , , , , at 11:04 am by autismmommytherapist

(Gary Weitzen, Executive Director)

It’s a brisk, wintry Saturday evening. Feathers and fedoras abound for the “gangster ball” theme, drinks are flowing, and the driving beat of good tunes makes it impossible not to claim space on the dance floor. No, this is not a scene from Boardwalk Empire. It’s a sneak peak at the POAC (Parents of Autistic Children) Gala, which is celebrated annually at the Eagle Ridge Golf Club, and will take place this February 25th at 6:00 PM.

I will not being wearing a flapper dress. They are not that becoming when you’re short.

In a few weeks several hundred people will soon gather to support POAC, as they endeavor to raise money to support the multitude of programs they continually offer to those within the autistic community. These programs range from providing educational supports to parents, teachers, and school personnel, as well as offering recreational activities to children with autism and their siblings. POAC receives no state or federal funds, and its existence relies entirely upon private donations.

Most of these programs remain free to anyone who works with or loves a child with autism.

I can speak from personal experience about what POAC has meant to me, and to many families in the area. When we relocated back to New Jersey six years ago, our eldest child had only had his autism diagnosis for about a year. While living in the Washington, DC area I had struggled to find activities to do with my son. I also struggled to find free educational opportunities with which to enhance his in-home ABA program, the methodology many people use to instruct autistic children.

(Simone Tellini, Training Coordinator)

As soon as I found out about POAC I realized we immediately had access to a wonderful support group, a variety of free educational workshops, and recreational opportunities in an atmosphere that was always welcoming to my child. POAC gave me and my son an outlet on weekends, and through one of their fundraisers a few years ago at Rein Dancer Therapeutic Riding Center, they were instrumental in showing me my eldest’s love for all things equine as well.

Most importantly, POAC gave us a second family.

The price of a ticket to attend the gala is $150, but there are other ways to contribute as well. Each year at the Gala a silent auction is held, and POAC is in need of donations for this year’s fundraiser. The Gala committee also holds a gift auction and raffle as well, and POAC would greatly appreciate any contributions of business goods or services. Finally, another way to contribute would be to place an ad in the Journal that is distributed to all guests the night of the event.

Any contribution you or your company make would benefit children with autism and their families tremendously.

If you are interested in participating, donations can be brought to the POAC office, or will be picked up for you. Please contact POAC at:

1999 Route 88

Brick, NJ 08724

(732) 785-1099

Thank you so much!

January 17, 2012

Respite Repealed

Posted in If You Need a Good Cry, My Take on Autism tagged , , , , , , at 10:26 am by autismmommytherapist

“We’ll make it” I tell myself, even though Justin is thoroughly kvetching and we haven’t even concluded one entire game of bowling. My eldest son has become slightly more agitated as the afternoon has worn on, but thankfully remains mostly compliant. He dutifully takes his ball to the special ramp designed to help him aim, and afterwards embraces me with one of his trademark bear hugs as he waits for the machine to reset his pins.

We’re about to commence the tenth and final frame as he fingers release his round captive, and without warning, the board that whisks the pins away slams down, preventing his ball from concluding its course. Given his post-illness decline in behavior over the past few weeks I expect anger, or at least frustration, but he seems relieved. He knows he can expect a trip to the snack machine now, and as we make our way back to our assigned swivel seats and my wallet, I admit I am relieved too. We seem to be in the home stretch, another outing successfully conducted despite his recent regression.

Then, he sees the french fries.

 

We’re back in the car, my heart pounding, Justin sobbing relentlessly, my coat askew. I manage to snap the last buckle on his vest restraints as he tries to pinch me again. I thwart his efforts, and as usual, the anger in his eyes recedes. He grabs a hunk of hair on both sides of my head, and drags me down for his signature “sorry” kiss.

Then, I’m sobbing too.

I wipe the tears from his cheek, hand him a juice box, and my boy’s tears subside. After firmly closing his door I open mine, and heave his bag and my purse onto the front passenger seat, because I literally don’t have the energy to walk around to the other side of the car. I allow myself to recall what just happened, to play it out in my mind so I can relinquish this episode to the past.

 

It’s the smell of fried potatoes that calls his attention, because I’ve maneuvered my body so it blocks his view of her plate, but to no avail. The woman at the table next to us has ordered this carb concoction, and its odor wafts over to us. Justin sees it, and Justin wants it. Not his own plate. Her plate. And he wants it now.

Despite his protestations, I manage to usher his four foot three frame, the length of which now measures up to my collar bones, back to our table. He is fighting me the entire way, wants out of his seat three, four, five, half a dozen times. I switch his shoes, throw on his coat and mine, and somehow grab all of our bags with one hand while holding onto his jacket with the other. We make several aborted attempts to exit the alley. The look in his eye is clear, focused, and devoid of what I know as the essence of my son. He wants that woman’s food..

He is relentless.

Somehow with me practically dragging him we make it out, past the stares of the manager, the families enjoying their time together, the elderly bowlers whom I know are regulars. A few have looks of disgust on their faces. After eight years I’m usually immune to the glares, particularly as they fortunately do not occur often. But today, I want all of the patrons to disappear. I want to disappear.

It crosses my mind that someone might even question my own behavior with my son.

 

I slide into the driver’s seat, wishing I retained the same measure of control over my child as I soon will with my car. I grab a wad of napkins left over from some local fast-food restaurant and wipe my own face, take a deep breath, and let the “replay” leave my conscious thoughts. There’s still a good six hours left in the day. There may be more skirmishes ahead.

I need to conserve my strength.

I allow myself one more brief moment of reflection as I feel Justin’s foot in the small of my back, his way of indicating to me he wants me to turn on the radio. After four weeks of this on-and-off behavior, I’m not even angry anymore, I’m just sad. I think of all the work we’ve done over the years. The behavior plans with his teachers and specialists. The home program, the outside speech therapy which we are fortunate to be able to provide him. The relentless adherence to ABA protocol that has helped him so much. The medications we’ve agonized over giving him, the same ones that have provided him, and our family, such a long respite from suffering. I think about how along with the moments of joy and the immense progress he’s made, I have to honor his true path and record these moments too, because these periods rear their ugly heads cyclically. They are one truth of my son’s type of autism too.

And they need to be heard.

I turn the ignition key, remind myself that we have a plan. There will be tests conducted over the next month. There will be at least several more visits with two separate specialists. Our family, Justin’s school, and his therapists are taking action. All we can do is continue to love him, and stick to our guns with disciplining his behaviors. Beyond that, all we can do is wait.

And I hate it.

December 5, 2011

A Friendly Smile

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 11:36 am by autismmommytherapist

We’re only twenty-five minutes into the movie, just long enough for the Machiavellian plot to raze the Muppets Theater to be revealed, when I notice that Justin has dumped his popcorn all over the floor. This action is quickly followed by him flinging his body across mine in order to zip up his “goody bag”, which is the universal sign for “let’s get the hell out of here”. I offer him juice, and am met with unmitigated rejection. I pop out my trusty lanyard, which along with the plastic container I’ve used to parcel out his treat is unceremoniously thrust back toward the now-zipped bag. Last, there’s the accompanying chaser of him pushing my hand toward the zipper.

Justin and I have a moment of eye contact where he makes it clear to me that none of my ABA tricks will work today, thank you very much. After getting him to reclaim his seat and be calm for a micro-second (always end on a good note), we rise. He joyfully scoots up the aisle, his “eeees” ringing round this sensory friendly showing of the movie, and I reluctantly follow.  I am uncharacteristically annoyed (he usually makes it at least an hour, and I generally don’t care about the denouement of childrens’ films since we end up owning them all anyway), and somewhat sluggish as I traipse after him.

I’m not concerned about his noisiness, as one of the things I love most about coming here once a month is the “anything goes” atmosphere, so I take a moment to visually scan the theater, just to see what’s going on. There’s a child in the back having a huge meltdown, while his mother and sister try to cajole him back to his seat. A little girl is running around the theater, arms flapping at her sides with her mother in close pursuit. A teen-ager is standing in the other aisle, raptly focused on the plot lines of a story I’ll probably bring Zach to see just so I can learn the ending. Nobody’s looking at anyone. There’s no judgment about behavior here. Our little troupe of autism families is simply focused on getting as much enjoyment out of the show as possible. Usually, for me, that would be enough.

Except today, it isn’t.

Today, I’m tired. My husband has been hacking up a lung for five days now, and both kids seem on the cusp of illness themselves. I’ve had ten meetings/doctor appointments in the last six days due to my lapse in temporary scheduling insanity, and I’m beat. Frankly, today, I just wanted to sit for an hour-and-a-half while stealing hits from my son’s popcorn stash and let my mind rest. I simply wanted, for once, to be still. Is that so much to ask?

Today, apparently, it is.

I’m muttering under my breath as I approach the exit, because I figure nobody in this theater will even notice this slight detour from appropriate behavior, and I happen to glance up at a woman sitting on the aisle a few rows in from the entrance. She has her small son in her lap, bouncing up and down with stimmy sounds and movements, joyful in his anticipation of Kermit. I watch her eyes as they’re drawn to my son’s rapid and vocal departure, then see them slide to me as I attempt to intercept Justin before he hits the hallway. Our eyes meet, and she smiles at me, a smile that contains compassion, understanding, and irony, all wrapped up in one slight upsweep of lips. This woman clearly knows the deal.

Yup. Got all that from a facial expression. I’m that good.

I return the favor with a look that I hope expresses thanks, and catch up with my wayward son before he barrels into a toddler making his sturdy way to the restrooms. That brief look of empathy, that glimpse of community, is not enough to entirely dissipate my irritation. I’ve dropped thirty bucks on this aborted adventure, roughly the cost of a speech therapy session or six frappacinos. There is a mountain of perfectly good buttery non-trans-fat popcorn gracing the theater floor from which I will never get to graze. Today, my tired, middle-aged body will only get to sit the length of a sit-com.

Sucks for me.

And yet, for a brief moment in time, somebody else understood this crazy, upside-down world within which my family frequently resides. With just one glance, I could tell this nice mom sometimes dwells there too. And no, it’s not enough to make the frustration of my son’s often limited world go away.

It was just a look, a few seconds of someone’s time. But it helped. And to that autism mommy, wherever she is, I send out a shout of thanks.

For a listing of Sensory Friendly Films (scroll down to the bottom for future months), please see:

http://www.autism-society.org/get-involved/events/sensory-friendly-films/

September 26, 2011

The Most Important Meal of the Day

Posted in Life's Little Moments tagged , , , , , , , , at 11:29 am by autismmommytherapist

SNAP!!!!  The cracking sound of Justin’s tray being disengaged from its seat stops me in mid-swig from my Coke 90, and I quickly abandon my caffeine fix to rush back to the kitchen table. I look down at his plate and take in the completely disregarded toast and bacon pieces I’d hope would constitute breakfast, and insist that he sit down once again and try to eat something. Unfortunately, me and my boy have been at the “breakfast wars” going on ten straight days now, and I’m running out of ideas.

Over the past week I’ve attempted pancakes (the smell of the first burned batch lingered for days), and French toast (met with such disdain it was as if I’d poisoned it). I would have happily made the supreme sacrifice to actually fly to France and procure croissants for him if he’d just eat SOMETHING (I know, I’m that kind of mom), but since that option’s out, the best I’ve been able to do lately is get a piece of bacon into him. I offer him a strip of cholesterol in the hopes he’ll take it, and instead am met with a forceful shove of the hand, followed by my son standing up and in no uncertain terms disposing of his plate. He’s eight now, and only a head shorter than me.  Force-feeding him is no longer a reality, so I let him go.

So much for breakfast being the most important meal of the day.

There was a time five years ago when we actually had to force-feed him, which out of all the distressing issues that arise with some types of autism (and there are many), this ranks up there as one of the worst. Justin’s appetite had decreased a bit prior to me and my husband taking a vacation, but our boy has always had a rather ambivalent attitude toward food, and we didn’t think anything of it. We left for five days, and by the time we returned home he had stopped consuming absolutely everything. In only a week’s time he had begun to take on that skeletal, “starvationesque” appearance, and my mom was fairly frantic.

We all figured once his parents returned and routine was restored, Justin would resume eating. He didn’t. He in fact did not even permit a carb to pass his lips until we’d hired an eating consultant to teach us some behavioral tricks, techniques that in the end amount to fancy force-feeding. It took two days, but eventually he ceased trying to attain his perfect modeling weight, and to our delight, even consumed a vegetable.

It never happened again, but I have it on video.

I admit, I am really frustrated with him right now. This is mostly because I know that like his mother, unless he consumes something edible every few hours he’ll be in a bear of a mood, and I don’t like to send him off to school this way. He was up at 5:30 this morning so we have some time to kill, and as he plays the same scene from Despicable Me over and over, I search relentlessly through the fridge and pantry to come up with an alternative. Nothing jumps out at me (this kid even rejected Pop-tarts, which made my husband wonder if he was really his), until my eyes light upon an egg carton, one I’m justifiably afraid might have been there since the last presidential administration.

Thankfully, it turns out to be democratic dairy.

I know my chances of getting him to eat an egg (it’s a textural thing) are about as great as having a child on the spectrum, but since we all know how that turned out chez McCafferty, I figure it’s worth a try. I recall somewhere in the deep recesses of my brain that he’s become a fan of one of the Tastefully Simple spices I use when I pretend to cook, and I decide it couldn’t hurt to try to bribe him with Garlic-Garlic. I whip up two cylindrical orbs, lead a confused boy back to his seat, and present him with a new meal, fork in tow.

Damned if he doesn’t eat every crumb, with the added bonus of independently employing a utensil.

I’m not sure which is more shocking- that he’s actually eating breakfast, using the same fork he’s rejected for six years, or wolfing down a meal his mother herself concocted. At this moment, I admit, I really don’t care. Justin finishes quickly, gives me a smile and quick kiss so full of garlic I know the vampires will stay away, and happily escorts his empty plate back to the sink. I reward him with the hugs, kisses and praise I thank the entire universe that he’s always craved, and quickly start administering the twelve thousand supplements we have him take first thing in the morning.

I savor this victory, as for years around here that word was an elusive guest.

I also remind myself that I have to keep trying new things with him, even if every instinct in my body says the foreign intrusion will be rejected. Over the past few months I’ve seen him spontaneously request toys on his iPad, respond to a game of “chase” with Zachary, and once (albeit mistakenly) consume a piece of fruit and keep it down. Granted, these are all small accomplishments, perhaps not even recognized (except for the fruit consumption) in most typical homes. But here, these milestones are huge, and I want to make certain to notice, and to appreciate, every single one.

And as I catalogue yet one more battle won in the war for a happy, safe, and productive boy, I feel my stomach rumble, head toward the fridge, and remind myself that my pre-dawn Garlic-Garlic idea was pretty appetizing after all.

February 23, 2011

Conference Call

Posted in Life's Little Moments tagged , , , , , at 10:17 am by autismmommytherapist

“Recalculating. Recalculating. Recalculating.”  I have to laugh as my GPS scolds me for irresponsibly avoiding the most direct route and taking the “pretty way” instead, because I spend a good deal of my life kowtowing to that particular verb, and I can’t seem to evade that reality even when I’m driving. I’m on my way up to Justin’s school for his first parent-teacher conference, and I’ve left myself so much extra time “just in case” that I can indulge myself with river views rather than the parkway. I do a time check as I ease another Stevie Nicks CD into my player, once again ending the eighties as I disengage my Sirius radio. I’ll be early, but regretfully not early enough for a Wegman’s run, and I chastise myself for answering emails this morning when I knew I’d be in such close proximity to food mecca later.

Priorities, Kim, priorities.

I glide serenely into the empty guest parking lot, happy I’ll have enough time for chit-chat with the lovely secretary who endured my multitude of inane questions when Justin first began attending school. She kindly lets Justin’s teacher know I’m here, and makes certain the class won’t be parading by the waiting area any time soon. In ABA terms Justin and I are “well-paired”, and if he even caught a whiff of mommy in the house, no matter how much fun he’s having at the time, he’d demand a quick departure. This child is even excited to leave school for a doctor’s appointment.

He is truly a momma’s boy.

Fortunately, today I don’t have to execute a duck and run, and as my son’s lovely teacher soon makes her presence known, we retire quickly to one of the administrator’s empty offices. She is a passionate educator, and it was evident the first time we spoke this summer that for her this work is a vocation, not a job. Given my dozen years in the profession myself I was ecstatic with our conversation, and I clearly recall hanging up the phone and executing the “happy dance” for Jeff, the image of which I will leave to your imagination. Although legally I’m only entitled to “free and appropriate” for Justin, we’ve managed to score “fabulous and exceptional” for him, and I still haven’t recovered fully from the magnitude of our good fortune. I continue to try and temper my joy just so I won’t completely terrify her.

She’s come encumbered with lists and folders and work, although we put aside his academics for a moment to discuss his behavior first, which for the most part has been as appropriate as possible for a moderately autistic youth. I am told that Justin’s weekend lunch date has taken on the mantle of “big brother” to my oldest child, and although my son generally ignores the rest of his classmates, he permits this particular boy to instruct him in the “fine art of school” frequently. He even looks for his buddy at certain venues, the computer, the playground, or the dreaded PE class, which he seems to enjoy about as much as his mother did. I am also informed that my son is a surreptitious hugger, often sneaking up behind his adored teacher and turning his face to hers for one of his intense gazes, followed by lip-lock, for no apparent reason at all.

He began this behavior at two. I’m happy to see the tradition has continued.

Since we only have thirty minutes together we dive into his academic progress next, and I sit up a bit straighter in my chair. She tells me he is flying, which I already knew somewhat from our daily email exchanges, but I was not aware how far, and how fast. She says she is thrilled with his progress, and confident that he will one day type in a manner more meaningful than the hunt-and-peck methodology I tell her he shares with his father. She positively beams as she explains he is soaring through his reading comprehension exercises. Given how many years his mother spent with her nose buried in books, there are no surprises there.

Math is his weakness (no surprises there either), but he continues to make inroads into that domain as well, despite the flip side of his maternal genetic legacy. He’s not a genius, my boy. But he has exceeded her initial expectations, and she remarks how rewarding it is to see him so excited by learning, how eager he is to come to the table, so to speak. She is pleased to see how aware he is, how bright. I tell her those latter facts are at once so gratifying, and so difficult to endure.

She says she understands. And I know she does.

After I finish willing my saline-laden liquids back into the ducts from whence they came I gingerly broach the future with her, because I’ve come to accept that living in the moment is a goal not easily mastered for me, and I just have to roll with who I am. One of my greatest fears is that when my son is grown there will be no job options for him, nowhere for him to spend his days other than at home with his aging, and most likely exhausted, mother. Despite his intellectual aptitude my son is held captive to the strictures of perseveration, the ritualistic routines that often prevent him from completing a task. There are entire days, if he were allowed, that he’d spend more time in the closet arranging his toys than I would organizing my wardrobe.

I worry that this issue, coupled with his proclivity for egress from everywhere after half an hour, will preclude him from meaningful employment. Again, I’m not asking for Wall Street, or a career in education, which is much more up my alley. I’m simply asking his teacher if she thinks one day, with a bit more maturity under his belt, he’d have the aptitude to labor at some occupation he might even enjoy, and would there possibly be a place for him to do so.

This time she straightens up in her chair, looks me right in the eye, and says “absolutely.”

Those damn ducts betray me as a few tears gather conspicuously in the corners of my eyes, and I exhale both physically and mentally, and smile. She tells me nothing is certain, the fact of which I am reminded on a frequent and daily basis, but the prospects are favorable. I really wish foretelling the future was a cornerstone of her contract, but I resist telling her this.

Of my restraint, I am so very proud.

We end our meeting as snack is soon to conclude in Justin’s room, and I am loathe to take his teacher away from anything remotely academic. She shakes my hand firmly, looks me in the eyes, and tells me how much she adores my boy, how happy she and the faculty are that he is a student there, that he graces her classroom. I commend her profusely for taking such good care of my son, and tell her that her professionalism has a ripple effect that far exceeds Justin, and extends to our entire family as a whole. I tell her I appreciate all of her hard work. I thank her for “getting him”.

And as I leave, I allow myself, for the first time, to contemplate the stunning idea that one day, my boy might actually have a job.

January 28, 2011

The Boys Are Alright

Posted in Life's Little Moments tagged , , at 9:55 am by autismmommytherapist

The phone rings, and I run to it, dripping wet from the shower I snuck upstairs to take. I know without even looking at the caller ID who will be on the other end of the line, and so I dramatically begin my mental preparations to stave off my impending despair. I press “talk”, and sadly I am validated, as it is indeed our Sunday morning therapist calling to cancel. She has an extremely valid excuse, and of course, being the magnanimous person that I am, I’ve already forgiven her before we’ve even severed our connection. I am conscious however that this change of plans will slightly derail our day, and that Justin will regret not having his weekly session with her, may actually “protest” her defection. I’ve been filling in occasionally for his other therapist who’s currently on maternity leave, and since he’s missed so much school lately due to the fact we seem to have acquired New England’s weather system, I know I should run a session with him today so he doesn’t lose mastered skills. I sigh, thinking of the glorious hour I would have had while Zach played with his father and I wrote inane witticisms on Facebook, then dry and dress myself and walk downstairs.

All is fairly calm in the kingdom at the moment, and as Jeff guesses who our mystery caller was I tell him I’ll tutor Justin myself, and that he should maneuver Zach upstairs. I know that Justin will be fine with his substitute teacher, although he prefers the novelty of a fresh face, and I’m confident we can get through at least the majority of his most crucial goals without a meltdown. I move through the kitchen to get the boys’ snacks ready, and as I do so I casually mention to Zach that he will be going upstairs to play with Daddy so Mommy can teach Justin. He screams, plants his feet firmly in what I like to call his “no way” stance, and says “No! I want to go to school too, and I want Daddy to teach me!”  Jeff and I both burst out laughing, and I know we are recalling the last time Jeff tried to instruct one of our children (it ended with Justin strapped into his chair “watching football”, my husband insisting upon my return home that it was an educational opportunity, since he was teaching him colors, letters and numbers from our big screen). Patience, and instructing small children, are not my husband’s forte.

Once we can both breathe again I look at my spouse and say, “Sure, why not, at least it will be entertaining”, and I turn to Zach and tell him he can go to mommy’s school with Justin as long as he’s a good boy. Tears immediately arrest on his face, and he runs over to the art/therapy table and promptly takes Justin’s seat. I know this won’t fly with my eldest, so I cajole Zach over to the empty chair next to him, and deposit the snacks on the floor. I call Justin over to join us, and he quickly runs to the table once he sees his favorite popcorn lying in wait for him, then stops dead in his tracks as he registers Zachary’s presence. He’s usually pretty great where his little brother is concerned (unless they’re fighting over the attentions of our attractive teen-aged babysitter), and fortunately this time he remains true to form. I see the flash of white teeth as his grin spreads across his face, and he slides into his seat happily, grabbing my shoulders and pulling me toward him to bestow a big kiss on my forehead.

Yes, my child is thanking me for making him learn something. This is why I (sometimes) forego reality tv shows for plotting how to make his life better. He’s just that sweet.

I ready my materials as Jeff comes around the corner and slides his 6’4” frame awkwardly into the remaining plastic chair, and decide to handle spelling first, as this is something Zach can participate in as well. I fan the letters out in an asymmetrical array before us, and just for kicks, as this noun is well beneath my son’s word repertoire, I ask him to spell “cat”. Zach pipes up “I’ll do it!”, and promptly adheres the letters “z”, “b”, “d”, and “t” to the waiting Velcro strip lying bare before us. Jeff raises his eyebrows at me (I’m thinking it’s time to put a little extra effort into phonics with the younger one), and I tell him “good try”, making tiger mothers everywhere shudder with contempt. My eldest indicates his mastery over such simplicity rapidly and with an air of boredom, and I know I’ve got to ramp things up a bit or I’ll lose my students’ attention. We attempt “boat” next in my thinly veiled attempt to go to a more fun place, and Justin quickly nails it. I barely have time to return the embrace he seeks for reward along with his coveted kernels when Zach turns toward me, sticks his feet up on the table and says, “Are we done yet?”

Guess this is why I never won “teacher of the year”.

Now that I’ve bored him to death (after all, he has legos waiting for him upstairs, spelling is so “yesterday”), Jeff walks him upstairs, and Justin and I are able to resume our interrupted lesson. I hear the slamming of doors and screams of glee as my husband chases Zach around our second floor, and I am grateful once again that the sensory diversion of sound no longer upsets my eldest. We weave our way through the lesson, bickering occasionally over how many pieces of popcorn are commensurate with a correct response, but all in all, our session is smooth sailing. Justin is learning. Zachary is happy.

The boys are alright.

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