October 31, 2016
An Open Mind
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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January 4, 2012
Dear Diary…
Dear Diary…
That’s how each segment of my play starts, a script I wrote this summer when I was able to summon the maturity to ignore my pool and whatever Game of Thrones novel I was reading at the time. It’s the story of three mothers and their experiences with their autistic children, all of whom hail from extremely diverse backgrounds, and all of whom are raising children with autism who reside on various parts of the spectrum. One woman is a young mother struggling with her marriage as well as her son’s diagnosis; one is a rather devout Jew and single parent; and one is a college professor raising adopted autistic twins with her life partner.
I’ll confess, the lesbian is my favorite. She’s quite sassy.
I’ll also divulge to you that this past summer nobody was more surprised than me that I could write fiction. My last foray into this genre was a rather pathetic short story penned so long ago (the 80’s) that it is most assuredly residing in a landfill rather than a recycling bin. The truth is, the idea to write the play at all was in part born out of a desire to create a fundraiser for Parents of Autistic Children (POAC), a local and fabulous autism organization, and in part to promote another endeavor I’ll be speaking about at a later time. Frankly, I was simply thrilled I could do it, and equally honored that POAC agreed to let me produce it for them.
I’ll be announcing dates soon, and there may be multiple venues (as to my non-faux-humble surprise a few “real” theaters actually seem to be interested) but I’ll wait to formally announce until everything’s set in stone. I’m hoping to put on a few shows here in Jersey, and a night or two in DC, the city I consider my second home. Of course, when Tina Fey and Amy Poehler beg me to be a part of such a monumental event, I’ll graciously concede, and I’m certain Broadway will open its arms to me as well.
Tina and Amy might have a small part in that too.
When the “tour” is over, if it turns out that someone other than my husband liked my play, I plan on making my script available to anyone who’d like to use it as a fundraiser as well. There will be some rules (it’s a play about autism, of course there will be rules). Any individual interested will have to show proof of where the money’s going (I don’t want to find out down the road my writing contributed to someone’s granite kitchen countertops). Said individual will have to promise to read my words as written (if you have some differing opinions to express, write your own play). Although this isn’t a deal-breaker, it would also be lovely if whomever appropriates the script mentions I wrote the thing, and informs me as to how much money they banked for their organization.
And if you’re thinking you don’t have time to put on a play to support your favorite autism organization, trust me, this little theatrical contraption couldn’t be easier to produce. There’s no memorization, no dialogue, and no sets. Hell, there’s really no movement required at all. If you have a living room, a few chairs, and three women who can read, you’ll have yourself a free fundraiser.
Coupled with my goal of relaxing more in 2012 is my desire to throw things out to the universe a bit more, and I’m so excited to give “the theater” a try. I’ve already begun to learn about important things like building permits, fire codes, and soundboards. I’ve acquired my fabulous autism-mom/actresses, Dr. Robyn Leitner, and Babette Zschiegner from Peace with Autism. Most importantly, I’ve begun shortlisting songs for us to walk onstage to (most of my husband’s suggestions were inappropriate, I sense a contest on Facebook in the imminent future). So join me in April (dates TBA), and support POAC, a wonderful autism organization.
I promise, you’ll laugh a little, and you’ll cry a little. Thanks in advance for your support!
October 17, 2011
Aspiritech
“Hon, I’m pulling out something from the paper for you to read” my husband calls to me as he stands in front of the kitchen counter, where he’s diligently clipping coupons for the week. I yell back “thanks”, and continue to supervise Justin washing his hands in the bathroom sink, a task both of my children still find fairly distasteful after all these years (must be a boy thing). I tell him to put it on my “pile” in the living room, a mound which mocks me daily as I ignore articles and magazines while I attempt to finish the most recent book in the Game of Thrones series (George R.R. Martin, you brought me back to the fantasy genre and entertained me all summer, I owe you, well, SOMETHING).
My eldest wipes his hands, then hands me the towel until I gesture for him to put it back himself (okay, technically I am the maid around here, but surely you can find the towel rack by now). Justin gives me one of his bear hugs, one of his embraces which requires me to sit down so I don’t fall over, and by the time we’ve exited the bathroom, I’ve promptly forgotten what my husband yelled to me from the kitchen.
This is not exactly shocking news around here.
I am later reminded of the existence of this article solely because my husband placed it prominently on top of the mountain of literary material which lives on our coffee table (I need my visuals). Much, much later in the day, when two boys are technically in bed for the evening and I am able to enjoy my downtime, I casually pick it up as I wait for Halloween Wars to start on the Food Network. This is a station I frequent in the hopes that I’ll absorb some of the techniques by osmosis, and they’ll translate to my cooking.
So far, they haven’t.
The title of the article from the Asbury Park Press is “Success at hiring autistic adults”, which immediately perks me up from my post-four-days-with-child haze. Along with what I like to call my “reach dreams” (adequate Early Intervention and school-age autism programs in every state, insurance coverage, and safe and appropriate housing for all), is this wish. That each adult with autism who is capable of holding a job, no matter where they fall on the spectrum, will one day be employed.
And Aspiritech, a nonprofit in Highland Park, Illinois, is just one more company working toward making a dream come true for these adults.
The article highlights several of the employees, Brian Tozzo, Jamie Specht, Rider Hallenstein, and Rick Alexander, four young men with Asperger’s syndrome. It turns out that some of the unique characteristics common to this type of autism, such as a facility with retaining detail coupled with a desire for repetition, make these particular employees incredibly skilled with computers. According to Dan Tedesco of a Connecticut-based company which used Aspiritech to test one of their iPhone apps, the workers there “exceeded my expectations”. He later goes on to say in the piece that the workers at Aspiritech had a “pride in their product you don’t usually see in this type of work.”
Apparently there are eight other clients just as pleased with Aspiritech’s work, which is a wonderful start.
The article later goes on to state that the company, founded by Moshe and Brenda Weitzberg, was founded after their son Oran, now thirty-two and a young man with Asperger’s, was fired from a grocery-bagging job. The Weitzbergs modeled their company after an organization called “Specialisterne”, or “the Specialists”, a Danish company which also hires employees with autism as their software testers. One of the testers at Aspiritech, Katie Levin, thirty-five, was not even diagnosed with the syndrome until she was an adult, was instead herself labeled as mentally ill as a child. I can only imagine what this job, and being part of this community, must mean to her.
Just reading about the existence of this company, when I think about Justin’s future and my desire for him to have a job he enjoys, holds great meaning for me.
The article is a quick read, and I put it down as the witching hour looms on cable, and edible haunted houses await me. This is just one more trickle in a rush of good fortune to befall the autism community lately, with states like California approving a bill which requires coverage of autism treatments until their federal health care law can be implemented, or (and my personal favorite) the passage of CARA. There are many more drops in our recent waterfall, too many to list here, or this would be the longest post EVER (and all of you have just so much time on your hands).
So here’s hoping that Aspiritech, and more companies like it, continue to make a splash.
