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.

 

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April 1, 2013

Autism Awareness Month

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , , at 9:34 am by autismmommytherapist

autism awareness

A few months ago a study from the University of Connecticut came out stating that some children who are accurately diagnosed with autism in their early years can grow out of it. The study, spearheaded by Deborah Fein and published in the Journal of Child Psychology and Psychiatry, looked at thirty-four adults between the ages of eight and twenty-one. All were diagnosed with autism spectrum disorder before the age of five, and all no longer showed any remaining signs of the disorder. In fact, the study showed no difference in their performance on standard tests when compared with a control group who had never been diagnosed with autism.

Just to keep this in perspective, current statistics show that only one in twenty children given the autistic label in early childhood will outgrow the symptoms.

When I read studies like this I am immediately brought back to my early days with Justin, who was diagnosed in 2004 at seventeen months, before Jenny McCarthy and autism were household words. Back then having a child diagnosed before the age of two was a rarity, and I recall that I held onto this fact tenaciously in those first few months. I enveloped myself in the comfort that at eighteen months of age Justin was in a thirty to thirty-five hour a week ABA program (mostly conducted by his mother), in some cases a year or more before most children were enrolled. His instruction was my solace in a time of chaos.

Quite frankly, I’ll admit that in that first year of therapy I was desperate. At that point I’d had exactly one interaction with a severely autistic person, the sibling of one of my former students. She was a pre-teen by the time I met her, very challenging behaviorally, and often quite unhappy. I remembered how extremely tired her parents looked, and how her younger sister, my charge, seemed wise beyond her years.

That experience stuck with me over the years, permeated my thoughts about what the future held for my firstborn. What terrified me for Justin was not that he had a label, or was different than most of us. Some of my favorite students were quite “different” from the mainstream, some with Downs Syndrome, some with severe ADHD, some just marching to the beat of a different drummer. Most of the time they were happy; in fact, I often felt they were happier with themselves than most of us truly are.

What horrified me about Justin’s diagnosis and the apparent severity of the disorder’s presentation in him was that most of the time he was unhappy too. Not cranky. Not irritable. No, my boy was predominantly, seemingly irrevocably miserable (and with his constant lack of sleep, reflux, and diarrhea, who wouldn’t be). In those first tenuous months of instruction all I thought about was “curing” him, rendering him indistinguishable from his peers. Sure, I wanted to hear his elusive laughter more frequently too, but mostly I wanted to strip his autism from his soul, render him more “typical”.

I wanted him to be like me.

My feelings have changed dramatically since those dark days almost nine years ago, but I stand by how I felt then, feel a tenderness toward that first-time, terrified, mother. My baby was undeniably suffering. I would have done anything to make it stop.

And now, thank God, I can truly say he isn’t suffering any more.

Justin’s life trajectory will not follow a traditional path, or at least the road my family has generally traveled, one which includes higher education, a life partner, friends. I’ve accepted this, and also accepted that part of me will always mourn that he won’t have the trappings of an existence that have so enhanced mine. What’s come in the wake of this acceptance is the dawning realization that my son adores his life, his routines, the few sacred persons whom he loves, and by whom he is loved in return. He is, most of the time, perfectly happy.

At this point, it’s just me who sometimes struggles.

He will not “recover”. There will be no magic pill for him, no concoction which makes him speak, no sloughing off of the characteristics that comprise his particular type of autism. I will forever chase off my fears of his future life without his parents, what will unfold for him when we are no longer here to protect him, respect him, love him for who he is. I’ve accepted this part of his path too, that I will worry until my last sentient thought dissolves into nothingness, and I am no longer of this world.

Yet he will still be here. And so I continue to work toward a world for him which includes a job that enables him to contribute to society, and a cadre of people who recognize his inherent worth. I continue to reach toward a world which extends past accepting his differences to celebrating them. I continue to hope that his world, whether I’m here or not, will remain filled with love.

Somewhere out there a child will be diagnosed today. A mother or father will be bombarded with information, avenues of therapy, promises of cures. It will all appear overwhelming, impossible, fraught with misery. There will seem to be only one solution to eradicate the sadness, one path to offer a child a fulfilling and meaningful life. There is more than one. There are many.

And to anyone embarking on this journey today, I hope my son’s story will help you to a place of peace.

October 23, 2011

Warriors, Tigers, and Dragons

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , , , , , , , , , , , at 12:09 pm by autismmommytherapist

It seems we’ve come to a place in our society where moms require labels to distinguish what kind of parenting we practice. Several years ago I read an article describing how Jenny McCarthy aptly coined the phrase “warrior moms”, a term dedicated to those of us fiercely advocating and fighting for our children with autism. This past year in Time Magazine the zeitgeist shifted to “tiger moms”, an appellation I grasp intellectually, but continue to reject solely on my belief that childhood should include choices, and at times actually be fun. Then last night, as I briefly skimmed through the daily Autism Speaks blog, I chanced upon a reference to a New York Times opinion piece called “Notes from a Dragon Mom”. Without reading the blurb I rolled my eyes and clicked on the link, ready to be regaled with yet another story of a superhuman mother which would surely leave me feeling vaguely guilty for all the things, despite my efforts, I somehow manage not to accomplish for my progeny.

Ten minutes and half a box of Kleenex later, I sent a silent plea to the universe to forgive me for that eye roll.

The piece, by author Emily Napp, describes in exquisite, precise prose how her eighteen-month-old son Ronan, a beautiful little boy with red hair kissed by fire, will not live to see his third birthday. I won’t give you the details here, because Ms. Napp does so brilliantly, with an elegant grace I cannot and should not attempt to reprise. I promise you however, this article is worth your time, and will perhaps alter your perspective on parenting irrevocably.

I know it did for me.

For years after both of my boys were deemed autistic, I was mostly immersed in the physicality of their diagnoses. My husband and I were completely caught up in dealing with sleepless nights, relentless rounds of diarrhea, eating aversions, and with my eldest, the feint and par of aggression. There wasn’t much time to consider the future, as the two of us at times were literally simply trying to make it through the hour. Quite frankly there was a safety to living in the moment, no matter how terrible it was. Having been a veteran educator myself I’d had access to several autistic students over the years, and had been privileged to know and follow their families over time. I had an extremely clear big picture view of what might transpire for my boys down the road, and the prospects were terrifying. I simply shelved those thoughts for the years immediately following what I like to call their “D Days”, and forced myself to focus on the now.

I believe making that shift saved my sanity.

There were times however, particularly during Justin’s pre-school years, that as our daily struggles lessoned, the weight of that possible future would insidiously slip its way back into my head, at times leaving me semi-paralyzed with fear. I realized ironically that as Justin’s challenging behavior lessoned, I would have to ramp up my own self-discipline, try to conquer my own fears, and stop living in my head. I’ve mentioned before in my blog that one of the most helpful tools I used to do so was Susan Senator’s book Making Peace with Autism. Her writing, despite our child’s moderate autism, afforded me both a blueprint for one day achieving a happy family, as well as a second important mental shift.

I clearly remember one fall morning in Barnes and Noble, snatching up this book from amongst a myriad of tomes that outlined the full recovery of the author’s child, and finding immediate comfort from the words within the cover. The solace came not from discovering a family who made every decision regarding their child’s care with consummate perfection. It came from reading about a family who learned to self-correct their errors, who made enough of the right choices despite their son’s severe autism to forge a path which would ultimately make possible what I consider the perfect endgame- a safe place to live, a social outlet, a job, and a happy life.

This remains my intended endgame for Justin as well.

Life continues to improve in our home, with my eldest making great strides in reading, communicating his needs, and finally being able to summon that peaceful child I knew existed, and worked so diligently to unearth, during all the dark years. Despite my second’s son’s identical diagnosis, Zachary’s life trajectory remains quite different than Justin’s, most likely including the more traditional fare of relationships, college, career, and independent living. Over time I’ve been able to reconcile the fact that Justin won’t have these options, mostly because he’s achieved the most important goal I’ve always had for both of my kids.

Both Justin and Zach love their lives.

As we’ve reached this point together as a family I’ve realized I won’t ever completely be at peace with the paths autism has altered for us, but the truth is I am completely at peace with that realization. There is one fear however that has lingered for me, the one that requires a serious “aha” moment, or one last emotional transition. I have yet to figure out how to deal with those decades I won’t be around to protect my boy, although if it were possible from beyond the grave, I surely would. Part of my problem is projection, or the very real fear of all that can go wrong when I’m gone.

Every year since Justin’s diagnosis I’ve come across a heartbreaking story of an adult with autism’s neglect, injury, or untimely death. These stories simply exacerbate my deepest fears, heighten the atmosphere of “what happened now”, in which my family dwelled for so long. The possibility of someone hurting the someday adult who will always remain my baby clouded the future, prevented me from seeing an alternative route. Yet the truth is, Justin may live safely for the forty years he’ll spend on earth without me. He may in fact acquire that job that suits him perfectly, enjoy authentic social opportunities, truly revel in his life. There’s every chance he may be just fine. The reality is, he’s lucky to have a future.

And last night, in devastating detail, Ms. Napp reminded me of that simple truth.

I admit, I feel somewhat guilty gleaning clarity from this piece, seeing how this author must surely dwell, despite the sweetness of living in the now, within the confines of constant, unremitting pain. Her words certainly have not completely eradicated my deepest worries concerning Justin’s existence post-parent, but they’ve given me a different way of contemplating the arc of his life. For that gift, I am eternally grateful.

I am confident I will never have the honor of meeting Ms. Napp to physically thank her for sharing her story. The most I can do is share the piece here. As the author states near the conclusion of the article, the truth for all of us raising the next generation is that “none of it is forever”. I thank Ms. Napp for altering my perspective. And I know, as I hug my boys who have already lived longer than her son probably ever will, I won’t forget this truth any time soon.