October 31, 2016

An Open Mind

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , at 11:16 am by autismmommytherapist

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Twelve years ago this month I walked into our pediatrician’s office with my then seventeen-month-old son in tow hoping for a prescription for reflux; I walked out shaking, crushed by our doctor’s callousness, and clutching four misstapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand, and left the room.

He wasn’t our pediatrician much longer.

I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription which would at least let me help him with something that I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.

As they say on “Game of Thrones,” I knew nothing Kim McCafferty.

The year was 2004, when Jenny McCarthy and “recovery” were hot in autism land. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.

There were parents claiming the only positive outcome of this diagnosis could be a cure that led to recovery.

There were autistic advocates and parents of autistic children claiming an alternative neurology cannot, nor should not, be cured.

There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk, and should always be employed.

There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.

There were parents telling me not to vaccinate.

There were physicians telling me I’d better vaccinate.

There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.

There were teachers sharing with me that despite the push for it mainstreaming might not be the most important goal regarding my son’s future education.

As I look over my list, I realize not all that much has changed in a dozen years.

I did my best by Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders, and his religious adherence to having things a certain way that would ultimately earn him a dual diagnosis of OCD and autism. My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.

Ultimately what I clung to to get through it all were my choices regarding Justin’s treatment, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.

I displayed my own rigid behavior regarding that information. According to studies I’d read sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were severely delayed. I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.

And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions I would have done my son far more harm than good.

After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!) I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then twenty-two-month old might actually end up with a way to communicate his needs other than by mostly crying.

If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.

I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of three I wanted him to have opportunities to engage with neurotypical peers because I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.

Okay, that last is still an important goal.

After four years in two different public school districts it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight week summer program.

I know, we’re spoiled.

I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.

And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.”

But as with many things in life I’m still a work in progress, and keeping an open mind is one goal I plan to keep.

 

Follow me on Facebook at Autism Mommy-Therapist

March 21, 2014

Sevenly and Autism Speaks

Posted in Fun Stuff, My Take on Autism tagged , , , , , , , , , at 10:49 am by autismmommytherapist

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When my eldest, severely autistic son was little our daily interactions were punctuated by frequent tantrums, an outcome I eventually learned was due mostly to his inability to articulate even his most basic needs.  Halfway into his second year his father and I realized Justin was more than just a “late talker,” and after his autism diagnosis we dedicated ourselves to finding a method of communication for our boy.

 

We tried sign language, PECS (Picture Exchange Communication System), and ProloquotoGo for his iPad, and never gave up hope for the mecca of the spoken word.  There were still tantrums of course (he’s a child, and strong-willed at that,) but they lessoned in frequency and severity with each system of communication we tried.  To date, he is usually able to articulate his desires thanks to his iPad and to the limited vocabulary we’re so thrilled he continues to build upon.  

 

We are so fortunate that through Justin’s school system and our insurance company we’ve been able to provide him with the training and devices he needs, as well as the training his non-techie mother required as well.  There are autism families not as fortunate as ours.  I cannot even imagine not being able to facilitate my son’s burgeoning independence as he shares his wants and needs with the world.

 

Apparently, the Sevenly Corporation, a company who on a weekly basis donates a portion of every product sold to a chosen charity, feels exactly the same way.

 

Sevenly contributes to a variety of different charities through marketing their unique one-of-a-kind products.  For every t-shirt sold, that week’s non-profit organization receives $7.  The company also uses social media to raise awareness for its partner non-profits.

 

Since 2012, when Sevenly began its partnership with Autism Speaks, the company has donated over $300,000 to the non-profit’s speech and communication programs.  Sevenly’s goal is to raise $20,000 per month through their product, a t-shirt collection whose logos are inspired by the courage, determination, and talent of autistic individuals.   Sevenly’s dream is to continue to use this forum to act as a positive impact on both families and individuals living with autism.

 

That’s a dream I can respect.

 

As many of you reading this piece already know, April is Autism Awareness month.  I prefer to view this thirty day period each year as autism acceptance month, and autism celebration month as well.  I had the chance to read some of their t-shirt’s inspiring slogans, including my favorite, “different not less,” and will be ordering that particular sentiment myself as we finally (!) march into spring.  If any of you are so inclined as to acquire “autism merch” I recommend checking out the site, and I’ve included a link below.  I know many families will directly benefit from your purchase.

 

And on behalf of my son, who continues to inspire and amaze us daily, I thank you as well.

 

 

http://www.sevenly.org/campaign/autism-speaks/

 

July 29, 2011

What’s Your Point?

Posted in If You Need a Good Laugh, Life's Little Moments tagged , , , , , , , , , , , , , at 11:28 am by autismmommytherapist

I noisily slurp my deceptively delicious frozen strawberry lemonade, a new concoction from McDonald’s (who knew the golden arches could corner the market on this summer’s most fabulous non-alcoholic beverage?), and take in the scene before me. It’s a familiar seasonal tableau, as my family of four often comes here to “dine” when on a Great Adventure outing, and I think the familiarity of the routine keeps everyone peaceful and calm. Zach is ignoring the ham we brought with us in deference to his GF/CF diet, and is playing seriously with Justin’s happy meal toy. My husband is scarfing down what actually looks like a fairly edible chicken sandwich, and Justin is contentedly watching Cars on his CD player while eating the fries I’m surreptitiously stealing from him. All is right, and “normal” for us, in the kingdom.

And then, my oldest boy points.

There was a time when my heart would have leapt into my throat with joy, along with the alluring thread of hope that this common way to communicate needs was leading up to a “breakthrough” for my son, a transition from his world, to mine. When he was diagnosed with autism at seventeen months, and had barely made the switch from infancy to the realm of toddlerhood, the necessity of teaching him how to point was drummed into me over and over by the vast majority of the professionals comprising Justin’s therapy team. Again and again I would hold his tiny hand, elongate his sweet pointer finger, carefully fold the remaining four into a gentle fist, and aim. He was supposed to be demonstrating this integral skill not only to convey his needs, but in order to share something of interest to his parents, his grandma, or just his babysitter.

The latter concept was called “joint attention”, a pivotal requirement for typical development in early childhood. I shaped those five digits frequently during those first years in the hope the desire to show us anything would “catch on”, but honestly, it rarely did. I do have one such encounter relegated forever to the digital world. It is a slightly shaky few minutes of film in which I recorded Justin sitting on Jeff’s lap pointing to the vibrantly portrayed animals in Eric Carle’s The Very Hungry Caterpillar, my son laughing gleefully as my husband recited each mammal’s name no matter how many times Justin referred to said animal in a row. Soon, even the desire to engage in that game dissipated too, and my son began to rectify his needs through PECS, his Springboard, and ultimately, his iPad. He found a way to engage us in his joy as well by simply using his eyes, not his finger, to showcase his discoveries. All in all, these methods have worked for him, and for us.

But today, he is pointing. It is a gesture preceded by a downward glance of disgust at his chicken nuggets, followed by a look of undeniable longing toward my husband’s poultry selection, and capped off with a “finger chaser” in case there are any doubts as to his desires. His emotions are so unusually readable on his face that Jeff and I have to laugh, as there is no confusion as to what he desires, and I know my spouse will be heading back to that frenzied food counter momentarily to repurchase his own lunch. In good father form he breaks off a bite-size piece, and my son is eager in his acquisition, almost inhaling the slice before Jeff can change his mind. He swallows, and we watch the mere hint of a smile cross his face as he imperiously extends that pointer finger again.

And I have to laugh once more, because this interchange is just so damn “normal”.

There have been a number of these moments in the last few weeks as I’ve entertained the two kids on their summer school/camp hiatus, and they are wonderful to see. One morning, well before my other two boys surfaced from slumber, me and my eldest constructed an Elmo fire station from Legos, mommy pointing at the photo on the box, and son locating the plastic piece and constructing the building from scratch. Two evenings later, Justin grabbed my youngest as he enacted his nightly bedtime ritual of hugging his big brother goodnight, pulled both boy and book into his bed, and regarded me with a look that left no doubt they’d be receiving their bedtime story together.

Fortunately, Velveteen Rabbit was a crowd-pleaser.

To tell you the truth, I’m pretty exhausted on this “time-out” from routine, and I’m only two-thirds of the way through. But I’m glad I’m witness to these fleeting moments, happy to participate in this minute foray into typical. Justin’s truly beginning to interact more with the world, his teachers, his sibling, even strangers who grace his path. It’s not earth-shattering progress, but it makes life so much easier for us all.

And that’s a concept I’ll take with me until that glorious first day of summer school.

July 14, 2011

In Repair

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , , at 9:08 am by autismmommytherapist

I close the door of my eldest son’s room gently behind me, secure in the knowledge we’ve completed our nightly ritual of singing, hugs, and one last dramatic run across his bedroom by me to assure him he is loved. Justin seemed absolutely exhausted tonight, which I’m sure is due in part to his unfortunate rejection of slumber at 5:15 this morning, and also due to the fact I purposely wore this child out in our pool today so he would sleep tonight. Both his father and I can make it through one fifteen hour day with him, but two in a row is torture.

His parents know their limits.

I hear the click of the doorknob settling into its groove as I walk over to my youngest son’s room, and find him performing “transformer moves” as my fatigued spouse tries desperately to sheathe him in his summer pajamas. I selfishly want no part of this scene, so I turn and walk into the bathroom to prepare his toothbrush so we can wash away the day’s detritus. I step into the hallway, and then I hear it.

My oldest son is sobbing. Abject, soul-stripping sobs.

I yell to Jeff that Justin is crying, which isn’t exactly the most apt description of what he’s doing but it will have to suffice, and rush back into his room. He picks his head up for a few inches, then lets it fall to the pillow in despair, and I slide into the bed next to him as he sidles up to me for comfort. In an effort to console him I quickly release him from the layers in which we ensconce him for comfort, the fishy throw, the under-the-sea sheet, and the sleeping bag which serves both as cocoon and conductor of warmth in the house we keep frigid, so his mother can conquer her hormones and sleep.

My eyes adjust to the feral darkness we’ve created to elongate his slumber, and I see his tears, those salty microcosms of sadness sliding gracefully down his face. Generally when he cries, which thankfully isn’t often anymore, he buries his face into the nearest trusted adult for comfort, seeking the murmurs and sounds of solace that accompany any embrace. Tonight however, he simply stares at me, eyes locking with mine, imploring.

And I know in my heart if he could talk, he’d say “Mommy, fix it.”

Justin and I have always had a special connection, a conduit into each other’s minds that has allowed us to understand one another even without the ease of the spoken word. I can clearly remember panicking a week or so after his diagnosis when it finally hit me that he might never talk, might not even manage a form of communication intelligible to most individuals in the “typical” world. I recall wondering not only how he would ever get his needs met, but worrying that at some point the facility with which I’ve been able to understand what he requires might disappear, leaving an angry, frustrated boy in its wake. Fortunately, this scenario has never taken place. When his PECS photos, his Springboard, and even his iPad have not sufficed, in general I’ve simply known what he needed. It is a gift for which I remain eternally grateful.

Except, tonight this gift has failed him, for I have no idea why my son is heart-broken, and no idea how to make the demons disappear.

If I have to take a stab at the origin of these plaintive cries I’m guessing it’s due to the fact that we’re hovering in hiatus. He’s taken to staring at that photo of his teacher gracing his nightstand a little longer that usual these days, and perhaps he’s missing her. I show him pictures of his school frequently and perform a daily calendar countdown to reassure him of his return, but I’m never certain of how much information gets through to him, and I still can’t ask him. He could be getting ill, but I can’t question him about his tummy or his head, can only brush his skin to search for fever. I realize his despair may be linked to something as simple as the complete disruption of his coveted routine, but I can’t query him about his possible lack-of-ritual angst, can only reassure him that life will return to normal soon.

My son is eight years old, and I still can’t ask him how Mommy can make it better.

I know this will be one of those moments that rips away my elation of how much progress he’s made, and slams me mercilessly against the big picture, the truth of how vulnerable he’ll always be in our world. It’s not an orphan moment. I dwell there any time an innocent comment is made about his future, his appearance, his intellect, or his attraction to pretty girls. There will be limits to this child’s life. I’ve discovered that since he dwells predominantly in a joyous landscape that I sometimes forget these barriers, am enmeshed safely in our “new normal”, able to forget autism’s confines.

But right now, the silence that surfaces when the sobbing’s concluded is a giant hand on my shoulder spinning me around, mercilessly forcing me to face reality.

And tonight I hate it, loathe that I can’t discuss my son’s sadness, construct a plan, pinpoint his fears, and banish them. Instead, all I can present him with is the solid weight of my arms wrapped around him. I can give him the tip of my forefinger, which will trace his forehead and the bridge of his nose in a tradition that has always elicited the sanctuary of slumber, even in his most agitated form. I can offer him these things, and I will.

But tonight, for me, it’s simply not enough.