October 15, 2018

The Little Things

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 11:30 am by autismmommytherapist

Fourteen years ago this month I held out a trembling hand as my then seventeen-month-old son’s pediatrician shoved some incomplete articles with the word “autism” prominently placed in the title, wished me luck, and hastily exited the room.

He literally couldn’t get out of there fast enough.

I was left alone to dress my toddler, the same one I’d been told three months before was only slightly delayed, was taking after his father’s childhood development, and not to worry. I remember my hands being so cold while dressing him, feeling numb, in shock. I couldn’t get out of there fast enough either, with my son’s prescription for reflux medicine clenched in my hand. I made it to my car, seated my son, and collapsed. Not a banner experience in our autism journey.

Fortunately, we’ve come so far from that terrible day.

Justin, my severely autistic son, has had many challenges his entire life. There were years I thought he’d be in diapers until he was fifty. We’ve had to have feeding specialists come to our home when he decided to stop eating. Sleep was an elusive dream, aggression at times an unwelcome and frequent companion.

It has not been easy chez McCafferty.

The truth is, fourteen years after that awful, despairing day, even despite the extreme challenges of the past year, we are in such a better place with our son, one I would not have dared hope for over a decade ago. I could tell you his success stems from many things. He had excellent Early Intervention services in New Jersey when he was young. He is in a stellar private autism school. We’ve had excellent ABA services and speech therapy for him since he was little. He has the support of our extended family, and has benefitted from POAC Autism Services’ many events when he was younger. He’s had many interventions with his school’s knowledgeable BCBA.

Most importantly, his success stems from his innate desire for happiness.

All of these things and more have contributed to where he is today, but here’s one thing that’s helped so much that I wish someone had emphasized to me when he was diagnosed at seventeen months.

Sometimes it’s the little things that contribute the most to growth.

When Justin was diagnosed we lived in Virginia, and there was no Early Intervention services worth speaking of at the time. My husband and I hired an outside ABA firm to train us and two therapists, and between the three of us we delivered about thirty-five hours a week of ABA therapy to my son for close to a year-and-a-half. I ended up doing the lion’s share simply because our insurance didn’t cover the therapy back then. I admit there were days it was grueling to work with Justin; some days it was fine but I was overwhelmed with the weight of the importance of what I was doing, how it could affect his whole life. I was often tired, stressed out, and worried I wasn’t doing it right.

But I kept on working with my son, pushing the both of us each day just a little bit more. Within months we saw a happier child acquiring skills easier and easier with each passing day.

I never gave up.

I was a very intense mother those first few years after his diagnosis, when we didn’t know where he’d end up on the spectrum. We know now that Justin will remain on the more severe end, and as I’ve accepted this prognosis I still feel intensely about his progress, but I’ve shifted my goals for him. We still pay attention to the little things, the follow-up, the need to see the skills he learns in school crossover to our home and outings. We continue to push him when we can, to follow up on that suggestion from his teacher or therapist, to not let his acquired skills fall by the wayside.

And yes, it was the big things that brought him to the place he’s in now- the decision to move to New Jersey for real Early Intervention services, the research we did to help get him his private placement. Those things are huge contributing factors in how well he’s doing now.

But I will never discount the little things too. The pushing him just five minutes more in a therapy session. Staying ten extra minutes on an outing just to show him he could do it. Following through on those suggestions from his therapists.

Helping him reach a more independent place even when the getting there was difficult.

Autism can be hard, sometimes excruciatingly so. None of us as parents can be perfect every day.

But as often as you can, try for that extra moment of connection, that acquisition of one more step toward an important goal, push your son or daughter just a little bit more on an outing. Each tiny success accumulates, slowly and subtly making things easier for your child, and for you.

Even when you’re so tired, and I’ve been there, it’s worth the effort.

It’s the little things.

 

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May 18, 2015

Wedding Vows

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 12:42 pm by autismmommytherapist

POAC Gala 008

Eleven years ago this fall my husband Jeff and I made our official debut into the world of autism, when our then eighteen-month-old son Justin was given the diagnosis of PDD-NOS by a lovely and very caring developmental pediatrician. At the time she didn’t want to give him an official autism diagnosis both because he was so young, and because he was so affectionate with his parents. As the visit concluded she recommended that we have him seen by either Georgetown hospital or Kennedy Krieger Institute when he turned two, and since Georgetown was closer, we went in that direction. We hunkered down for six months and did thirty hours a week of ABA therapy ourselves (at the time Virginia’s Early Intervention system didn’t recognize an autism diagnosis,) and waited for the big day we’d finally get the “A” word. We figured since it was “elite” Georgetown Hospital things would go fairly smoothly; we’d get the official diagnosis we’d eventually need for a pre-school handicapped program, and that would be that.

We could not have been more wrong.

Everything ran fairly smoothly at the hospital until we had a lengthy wait for the examination by their developmental pediatrician Dr. L (my theory is your wait-time for a member of the medical profession is directly proportionate to how important they feel you should think they are.) Justin let his displeasure be known throughout the entire physical exam (I often wondered if the physician or the two-year-old would prevail,) but finally she finished. I then made the mistake of asking her if there were any tests that would help determine the causes of Justin’s intermittent reflux, diarrhea and constipation, and she replied in the negative, then brightened considerably. This incredibly taciturn doctor actually looked like she was headed for a spa day.

Beaming, she let us know that there were no tests to be conducted on these issues, but that Justin should definitely get a twenty-four hour EEG. When I asked if there were any studies out there that showed this test could actually produce results that would help autistic kids, she excitedly told us that her colleague Dr. Z was performing a study on overnight EEGs, and if we were lucky there would still be room for Justin to participate. She then pointed out the pictures lining the walls of the room that showed a number of children with intimidating head gear. All of them were smiling, looking at the camera, and were peacefully wearing what looked like an alien football helmet strapped to their skulls.

I sensed with Justin we wouldn’t even get one damn electrode on his little head.

I reiterated my question about how this could possibly help my son, and looking deeply offended, our developmental pediatrician of the day responded that we would be helping science, implying how could we ask for anything more? Jeff and I locked eyes, and I saw that his expression of exasperation, fatigue, and a slight dose of hilarity mirrored mine. That was the moment I knew my husband and I would make it. We were a team. We were in this together.

And we both thought Dr. L was full of crap.

We’ll be married nineteen years this month, and while our journey with autism has certainly had its share of bumps along the road, we’ve weathered them all together. We learned that for our marriage to thrive and not just survive, we had to take time for ourselves individually. We learned we had to carve out time together without our kids, even though it’s stressful to make those occasions happen. We’ve learned how to cover for each other when one parent has had enough, and we’ve learned how to ask for outside help, which wasn’t easy for us. Finally, we’ve learned how to find the humor in almost any situation with our kids, which I believe is the glue that’s actually kept us together the last twelve years.

We learned how to take a deep breath and rely on each other. He’s my partner and my friend, and I wouldn’t want to walk this road with anyone else.

 

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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.

July 1, 2012

Put a Fork In It

Posted in Life's Little Moments tagged , , , , at 10:16 am by autismmommytherapist

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.

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.

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.

August 1, 2011

Care for a Swim?

Posted in Life's Little Moments tagged , , , , at 9:15 am by autismmommytherapist


I slide the glass door gently back into place, and shimmering waves of heat greet me and Zach as we scurry across searing concrete to the water’s edge. He needs no encouragement to break the serene surface of our pool, whose liquid depths welcome us to temperatures reminiscent of bath water. I quickly drop our beach towels onto an empty lounge chair, and wade out three-quarters of the way into the shallow end just to rid myself of the sweat that’s accumulated during our five foot walk/run. I turn around just in time to see Zach descend the last step and plant his feet firmly on myriad shades of blue ceramic tile, hands on hips as he regards me from afar.


I urge him to “swim to me”, which up to this point has meant several consecutive paddles in a row accompanied by a face flatly refusing to immerse itself in chlorine. He smiles, thrusts his arms out before him with serious intent, flexes his feet, and uses the juncture of floor and step as leverage to propel himself toward me. Tiny pockets of air burst to freedom, heralding the arrival of a tow-headed boy who navigates most of the width of our pool underwater, a feat interrupted solely by my waiting arms as he embraces me. Zach plants himself on solid ground, wipes streams of water from his eyes and shouts, “I did it!  I swam just like Logan!”  It appears the child who’s been convinced all summer that anything more than a two-second immersion signifies imminent drowning is now swimming all of his own accord, simply because he saw his buddy do it two days before.

In other words, he’s acquired this new and vastly important skill simply because he wanted to imitate his friend.


We’ve tried this route before with other integral milestones, generally to no avail. With the guidance of his teacher the winter Zach turned three we attempted our first round of potty training, which ended after four weeks with his lovely educator practically begging us to abort and try again in the fall. We of course had included the requisite rewards as incentives to make deposits in our porcelain potties, and had trotted out various men and boys as role models to inspire him, but at the time, nothing worked.

He was also singularly unimpressed by watching his brother and father relieve themselves the “big boy way”, and equally unmoved by glimpses of his friends at school doing the same. Zach was quite content with the women in his life continuing to change his diaper, and equally happy to leave the men in his life to their own pursuits when it came to toilet habits. When it came to imitating his peers or the main males in his world, he couldn’t have cared less. This attitude has since extended to trying fruits, vegetables and any food group his mother has deemed particularly healthy as well.

Over the course of the past year I’ve seen this attitude shift and slowly disintegrate, making way for a child who’s eager to try new things that previously terrified him if he witnesses someone “cool” doing them first. This past month he expressed his desire to ride the roller coaster with Justin “like the big boys”, which now that he finally meets the height requirements, we allowed him to experience. He’s watched a friend from school scale the heights of a jungle gym with a relative ease, an activity that in the past had seemed completely daunting to my son. I’ve since watched him carefully calculate his chances at survival, vault the structure, and succeed in conquering it. On one particularly dare-devil morning he even permitted a “banana-pancake” to cross his lips, simply because his big brother had tried one. The fact that both slices of carb were subsequently rejected was irrelevant to the fact that at least both of my children had attempted a new food group.

Perhaps I’ll go crazy and try blueberries next. Maybe they will not offend.

This urge to mimic is momentous (of course, I may not think so when he’s a teen-ager), and I hope to continue capitalizing on it in the future. Maybe he’ll watch in admiration as his older brother walks his plate to the sink without being told a thousand times, and cart his own cutlery without my nagging. Perhaps now that playdates are occurring more easily, Zach will display a desire to clean up at their conclusion without prompting (I’ve been told that dream may be a bit unreasonable). As a converted “Skinnerian”, I am enthralled with the different ways I can use this new motivator to coax out more desirable behaviors down the road.

Who knows what could be next. After all, a few feet and a new milestone from our back door, a diving board beckons.

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