Category Archives: Teen 2

at the moment between inclusion and erasure

Japan massacre

You know that feeling you get when you realize you’re among like-minded souls who really, really get it, who understand what should be so evident and obvious to everyone else?

It’s an amazing feeling, isn’t it?  Understanding and acceptance wrapped up in group hugs and warm fuzzies.

It almost doesn’t matter what the it happens to be — and no, for once I’m not talking politics.   (Well, not really.)

On Wednesday, I spent some time at a national conference being held here in Pittsburgh with people who are passionate about making cultural organizations more accessible to people with disabilities. At this conference, guide dogs, wheelchairs, and assistive technology were the norm as attendees navigated the hotel’s conference rooms.

I was at the conference for work-related reasons, but it didn’t really feel like work. As a parent of a teenager with autism, I couldn’t help but remember The Boy’s early years — the black hole years, as I refer to them. The days when I couldn’t even take my toddler twins to storytime at the library because while The Girl would sit quietly, rapt and enthralled, The Boy would be a constant blur of motion, running for the door, making distracting noises.  The idea of going to a museum or a movie or a musical was absurd; hell, we could barely go to a park five minutes away without half a day’s preparations — and usually the exhaustion of chasing, chasing, chasing after The Boy or dealing with the stares or the inevitable meltdown became too much.

I realize now how much we truly missed out on, and it makes me angry and sad. Opportunities and experiences that are childhood mainstays were forever lost to us because there weren’t accommodations to make such outings easier or meaningful ones for our family — and especially, our boy.

Things have changed a lot in the 12 years since those dark days — in our family and, as I realized yesterday, at cultural organizations across the United States. (And I mean from all states; one session seemed like a roll call of delegates with people representing states from Montana to Massachusetts and everywhere in between.)  There’s exciting programming happening — and Pittsburgh is certainly taking its place among them with a growing number of sensory-friendly performances and accommodations at the ballet and symphony and festivals.

This post could end right here if I didn’t happen to check my phone during a break between conference sessions.

While daring to feel that things were improving, to hope for a day in my lifetime or my children’s lifetimes when people with disabilities are fully included and (dare I dream?) accepted in our society and (dare I wish?) not shot when others misunderstand the reasons behind their behaviors — my full heart suddenly felt punctured, like a water balloon.

There, on the conference floor amidst the guide dogs and the wheelchairs and the advocates and the people championing the needs of people like my kid, there I stood reading my friend Elizabeth Aquino’s post “Erasure” which was prompted by  Emily Willingham’s Forbes article “This Is What Disability Erasure Looks Like.”

I read both posts, which are vehement responses to the July 26 massacre in Japan that killed 19 people and left an additional 26 injured at a residential care facility for people with disabilities. A deliberate slaughter, this attack was, and one that was forewarned in a letter by the perpetrator in chilling detail.

“I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities,” the letter said.

[His] letter said he could “wipe out a total of 470 disabled individuals” by targeting two facilities for disabled people during the night shift, “when staffing is low”.

“The act will be carried out speedily, and definitely without harming the staff. After wiping out the 260 people in two facilities, I will turn myself in.”

As Emily’s article for Forbes states, this heinous act came on July 26, exactly 26 years to the day that the Americans With Disabilities Act was signed in 1990.

Which was the focus of the conference I was at, where we were talking about accessibility and inclusion.

I felt, at that very moment, stuck between two opposite forces: One that embraces and welcomes people with disabilities, including them in programs that were once inaccessible, and the other hell bent on erasing people with disabilities from the face of the earth.  

The danger is becoming complacent about stories like the massacre in Japan, of turning away or not reading because “it’s too much.”  Make no mistake: this massacre may have happened in Japan but there’s every reason to believe that this could have — and certainly has the potential — to happen here in the United States.  As Emily wrote, one only needs to look at the incidents that have already occurred.

  • An autistic man sitting on the ground, playing with a toy truck, and being the real target of the bullets that found their way to the black man trying to protect him.
  • Presidential nominees who mock disabled people and the people who defend the mockery.
  • A society that thinks any behavior that’s not “normal“ deserves to be publicly jeered.
  • Widespread abuse of and violence against disabled people, around the world.

We cannot and must not be complacent about this.  We owe it to all people with disabilities — the ones who came before and the ones who will come afterwards — to include them, to celebrate them, to elevate their stories and their lives against the evil that would silence their lives.

It is the very least we can do in remembrance of 19 people erased from this world.

Please consider taking a few moments to read in its entirety Emily Willingham’s 7/27/2016 article in Forbes (“This Is What Disability Erasure Looks Like”) and Elizabeth Aquino’s blog post “Erasure.”  Also worth the read is Ellen Seidman of Love That Max: “The massacre of people with disability and what parents can do.”

Currently …Birthdays, Burghosphere, and Books

Chocolate cake

Currently …
Sunday evening, at the end of a busier than usual weekend. The highlights: a dentist visit for an 8:45 a.m. root canal (there’s no better way to spend a Saturday, let me tell you) and a Sunday afternoon hanging out with some of Pittsburgh’s best bloggers at Best of the Burghosphere, which I’ll post more about tomorrow. Afterwards, The Girl and I stopped by Half Price Books for some birthday shopping. As much as this may surprise some of you, I’d never been there before today. It’s now The Girl’s favorite store (and one of mine, too).

Celebrating …
We’re celebrating the kids’ birthdays this weekend. Hard to believe they are 14. We kept things fairly low-key with one of their favorite dinners (a simple version of pasta with chicken in alfredo sauce) and the chocolate cake, pictured above.

Reading … 
I finished two books this week, which is practically unheard of for me — especially given the slow pace at which I’ve been reading.

M TrainAccidental Saints

M Train by Patti Smith, which I enjoyed. This has a very free-form quality to it.  If you’ve ever been part of a writing workshop and the instructor says to write for ten minutes about whatever comes to mind, that’s what this feels like.  (It’s not so easy writing about nothing is the first line and at times this feels as if you’ve stolen a glimpse at a page written in Patti Smith’s notebook.) Non-linear in structure, M Train is what I would describe as a “writer’s book” and it isn’t going to appeal to everyone. It meanders, often in an esoteric way.

Accidental Saints: Finding God in All the Wrong People, by Nadia Bolz-Weber, who is the pastor of House for All Sinners and Saints in Denver.  I picked this up at the library after hearing a great interview with the author on NPR’s Fresh Air.  This was more … I don’t know … religious? theological? than I expected. (Also a bit too self-deprecating.)

Not Reading …
Another week, another DNF.  Despite my appreciation for its author, I’m finding the characters in Moral Disorder and Other Stories by Margaret Atwood to be somewhat boring.  I’ve been listening to this collection of linked stories on audio but it isn’t holding my attention. Back to the library it goes.

Anticipating …
Thanksgiving, which comes with a few additional vacation days from work for me.  Plenty of time for Thankfully Reading Weekend!

disco fever

The Boy to me:  “Mom, I’m getting into something new.”

Me: “Yeah? What’s that?”

Boy: “Disco.”

 

The Sunday Salon: Spring 2014 Readathon Wrap Up

The Sunday SalonReadathon - Day and NightAlong with more than 800 other bloggers, I spent yesterday participating in Dewey’s 24 Hour Read-a-thon. Well … six hours of yesterday, if we’re keeping track (which I was). With 156 pages read, that’s an average Readathon for me, so I’m pleased with those results.

Oliver TwistI’m especially glad to be done with Oliver Twist.  Oh my God, this book. Just tortuous. Seriously. The only reason I was reading it (and definitely the only reason I stuck with it, especially during a Readathon) was because my son was reading it for school. As many of you know, my son is a very, very reluctant reader. It’s something I’ve been trying to work with him on for years now, to no avail, it seems. Reading is just not his thing. So, not only did he choose Oliver Twist on his own to read for a school project, but he actually seemed to enjoy it. There’s more to this which I’ll write about later, but suffice it to say a 6th grade reading assignment is why I didn’t abandon Oliver long ago. (We weren’t required to read along with our kids. It’s just … well, it’s kind of an involved story.)

The Storied Life of A.J. FikryToday I took my daughter down to the library where I work because she wanted to participate in a teen writing workshop we were hosting. While she was busy with that, I started The Storied Life of A.J. Fikry by Gabrielle Zevin. This is getting a lot of buzz on the book blogs and elsewhere, so I’m curious to see how this unfolds. Plus, any book that manages to find a way to involve books is usually one that I tend to enjoy. So far, I am … it’s a cute story that is making me nostalgic for Martha’s Vineyard, where The Husband and I honeymooned for nine days, once upon a time. I’m waiting for a plot development that’s supposedly gonna knock my socks off.

(I’m also betting this becomes a movie in 3 … 2 … 1.)

 

 

cycles

Bike Camp - Day 4

Boo riding a two-wheeler for the first time outside at Bike Camp
July 25, 2013
photo credit: Melissa Firman

“I’ve been told and I believe
That life is meant for livin’
And even when my chips are low
There’s still some left for givin’
I’ve been many places
Maybe not as far as you
So I think I’ll stay awhile
And see if some dreams come true.” 

“Cycles” ~ (which happens to be one of my all-time favorite songs ever), written by Gayle Caldwell, sung by Frank Sinatra

Three seconds after I snapped this photo at Bike Camp today, my boy crashed into the guardrail.

Before that, though, he was more than excited to finally be riding the two-wheeler outside. He did great on the first day of camp and on Day 2 during Tandem Tuesday. Wednesday’s “Launch Day” with him being on a a two-wheeler for the first time was awesome (and captured on video). He couldn’t stop talking about it ALL. DAY. LONG. 

“I feel like a MAN!” he bellowed, puffing out his 4’4″ frame at the thought of having mastered the bike.

So today, after a mere 20 or so practice laps around the indoor track, our group of iCan Shine instructors, parents, volunteers, and folks from The Children’s Institute of Pittsburgh headed outside into a pinch-me-I’m-dreaming spectacular 70 degree-Pittsburgh-summer-day.

As these things tend to do, the crash happened almost instantly, almost in slow-motion. He took the left turn a bit too wide, was going down the incline a little too fast. My boy slammed into the guardrail, doubling over and holding his chest.

I’m not a reactionary parent. I don’t fall to pieces in such instances. Upon realizing that there wasn’t any blood and that nothing was visibly broken (except, we would later discover tonight, bent glasses), my first thought was, strangely, of our NICU days nearly a dozen years ago.

Maybe I have the Royal Baby Prince “Curious Boy” George on my mind (although I’m kind of disinterested).

Or maybe I was still thinking about the world’s first test-tube baby turning 35 and remembering how sci-fi that once seemed, having little idea how that very technology would bring me my own little cyclist.

Or, maybe it has to do with a bunch of thoughts crashing together.

My boy got right back up on the bike and finished the camp session with a few more practice laps indoors, riding around the track. And I was so incredibly proud of him for that, for holding it together and being able to somehow find it within himself to do that.

It wasn’t without its slight setback, though. He’s convinced that outdoor terrain isn’t for him after all, that he’ll be just fine sticking to the indoor track, thank you very much. Maaaaaaaaybe he will ride in our driveway. He’ll see.

“We didn’t go through all this to let this bike become a museum piece,” said The Husband to me this morning. “We need to undo this damage, stat.”

That is his way. Reverse course. Get back on track. Because this feels oh-so-familiar, like the spinning wheel of regression. It feels like all the miraculous gains of the the last 3.5 days have vanished.

I know that’s not true. But what we know and what we feel often aren’t the same things, right?

But as we assessed whether our boy was all right (he seems to be), and called the pediatrician to see if they wanted us to bring him in (no, as long as he wasn’t short of breath or in pain or otherwise markedly different), we spent some time talking with our boy. We talked a lot about the bike crash and reminded him how awesome it was riding the bike, and about how sometimes we need to take a chance of falling down in order to experience the truly great things that life has to offer. 

This seems intangible to my boy, this fluffy talk about risk and chances and goals. I’m not getting through on a practical, concrete sense, so we cycled back.

“Let’s make a plan for today,” I said this morning, in preparation for the final day of Bike Camp. “What about when we go outside on the bike, we take things a little slower at first. Not as fast.”

“Maybe start with three laps or something?” he offered.

“That sounds like a great idea, pal. I know you can do that.”

“Yeah.”

Bike Camp isn’t just about learning to ride a bike. Sure, that’s our goal and our kids’ goals and there are very tangible benefits that accompany this: increased independence and self-confidence, better health as a result of increased physical activity, additional opportunities for socialization … just to name a few.

But no matter what, in the small early hours of last night when I started writing this post, I just kept coming back to those very early days – the infertility, the weeks in the NICU, the autism diagnosis, what I refer to as “the black hole years” – and more recently with my long-term unemployment and the uncertainty and the cancer …and I realized that I needed to listen to myself. 

As Frank says, I’ve been many places. Different paths, yes, and maybe not as many exotic ones as you, but many places nonetheless.

And these places have been bumpy and caused us to stumble, to fall.

Hard.

But the only way we can keep our balance is to get back up and keep moving.

One, two, three laps at a time.

Life is like riding a bicycle – in order to keep your balance, you must keep moving.  ~Albert Einstein

You may also like:
he’s got a ticket to ride (bike camp, day 1)
in tandem (bike camp, day 2)

in tandem

Bike Camp - Day 2

iCan Shine Bike Camp Pittsburgh
photo credit: Melissa Firman

tan·dem [tan-duhm] 

adverb
1. one following or behind the other

Very rarely do I post pictures of my kids here on the blog. When I do, they’re intentionally blurry or taken from behind, so as to protect some vestige of privacy.

But there he is, my boy, in the photo above.

Day 2 of Bike Camp – which was today – is known as “Tandem Tuesday.”

That’s when campers ride an adaptive tandem bike, as Boo did this afternoon along with Peter, one of iCan Shines Bike Technicians.

The way the bike is engineered gives the rider the feeling – and the confidence – of what it’s like to be on two wheels.

Meanwhile, Peter the Bike Technician was evaluating his balance, turning, agility, and braking.

I put down my phone, my Kindle and just … watched.

I thought about the people who we have in tandem in our lives.

Who really have our backs.

Who see past our “I’m fine” to give a damn if we’re doing okay.

Who help us maneuver onto the right path.

Who keep us in balance.

Who pick us up when we fall.

Who are there.

Behind us. Following us. Alongside us.

With us for the ride, no matter what the path holds.

For always.

Bike Camp - Day 2 - Volunteers

Boo on adaptive bike, with volunteers running behind him to keep up.

Bike Camp - Bikes

Bikes, at the start of camp.

You may also like this post:
he’s got a ticket to ride (about Day 1 of Bike Camp)

cycles (days 3 and 4 of Bike Camp)

 

 

 

he’s got a ticket to ride

I Can Shine Bike Camp

Adaptive bike used by riders at iCan Shine, Inc. bike camp
Monroeville, PA
photo credit: Melissa Firman, July 2013

There was no mistaking my son’s response.

It wasn’t so much what he said, but what he didn’t say.

During his well-visit check up last week, the good doctor (and he is, truly, a good doctor) was talking to him about exercising and trying to eat more fruits and vegetables. At 11 years old, we’re having some challenges on both fronts; as if he’d read my mind, the pediatrician seemed to know the perfect approach to talk to my boy on this issue.

And then, a question. One that he’s probably asked hundreds, thousands of kids.

“Do you ride your bike in the neighborhood, maybe with a friend?”

My boy’s eyes went to the floor. There was no mistaking the look, the loaded weight of that inquiry.

His silence was just a moment, fleeting – accompanied by a quick look to me in the corner where I’d fortunately looked up from my phone to catch his glance.

His blue eyes said it all.

I don’t know how to ride a bike. 

My bike is kinda small. I got it when I was 7. It has training wheels. That’s embarrassing. 

What do you mean, a friend?

“I don’t really do that,” he said to the pediatrician. 

* * *

Once you’ve been through an autism evaluation, you don’t view doctor’s appointments the same way. Ever. At least I don’t. There’s always a feeling of needing to be “on,” of not letting down your guard, of wondering what the hell they are really typing into that computer, of wondering if you are on the same growth curve as all the other parents.

And I know that this shouldn’t matter, but the truth is, it does.

A lot.

Because as our first developmental pediatrician told us, you can’t help but compare kids to each other – and in this case, when you see other kids riding a bike, you can’t help but look at your kid and see another example in which you feel like you screwed up. 

Because we haven’t taught him.

Because we couldn’t.

Because we tried – and then stopped.

Because of The Husband’s herniated disc.

Because it was hot outside.

Because it looked like rain.

Because we’re just not an active, outdoorsy kind of family.

Because he has autism.

Because it was too hard.

Because his anxiety.

Because. Because. Because.

I remembered this post from my friend Alison Piepmeier about her experience with what is now iCan Shine, Inc. (formerly Lose the Training Wheels). I remember thinking how much Boo would benefit from a program like that.

I remembered reading Alison’s post when we were on the cusp of moving to Pittsburgh, and checking to see if our new city had the same program. I remember the feeling of this is going to be okay when I realized that they did. I remembered being at The Children’s Institute (the program host of the iCan Shine Amazing Kids Bike Camp here in Pittsburgh) and mentioning the camp during a job interview I didn’t get.

I remembered my boy’s face in the pediatrician’s office.

This past Friday, I looked to see when the Pittsburgh camp would be taking place, knowing full well we may have missed it. Again.

And there it was. Starting today. Registration ended six weeks ago.

I emailed the camp director anyway.  Long shot … just thought I’d ask … know it’s last minute …

There was one spot left.

* * *

Today was Day 1 of Bike Camp.

My boy was, as is his style when trying something new, kinda nonplussed. Somewhat uninterested, but semi-curious. My baby don’t care ….

iCan Shine relies on volunteers, as each rider is paired with at least one individual who walks or runs alongside him or her to help with spills and direction, give encouragement, catch smiles.

Boo’s volunteers are a family: a mom and her two sons who are helping out for the week.

Within minutes, he was on the bike and taking off around the indoor track.

He’s got this, I thought.

I’m not going to lie. It has been a good but very, very emotionally challenging summer.

We have fallen off so many proverbial bikes and learned how to get back on.

But for today? This one day?

We’re riding so high.

You may also like:

in tandem (day 2 of iCan Shine Bike Camp)

cycles (day 3 and 4 of iCan Shine Bike Camp)