"every journey is more fun if you can laugh along the way..."

Be The Village

Posted by on Mar 6, 2018 | 0 comments

Be The Village

Autism parents. Autistic adults.

Two communities that have the same essential goals, but are rarely able to meet on common ground.

One point of contention is the internet, and how autistic people are portrayed.

The latest flame on that fire is a video by Kate Swenson of Finding Cooper’s Voice, wherein she talks about her son Cooper’s nonverbal autism.

Kate’s website, Finding Cooper’s Voice, rose in visibility last year, when her video about an altercation at a special needs playground went viral. Then, in October, Kate and Cooper’s video submission to Jimmy Fallon and Today’s “Everything is Mama” contest took the top prize.

Kate makes a lot of videos about her family, and Cooper, in particular.

Kate’s latest video

This latest video, posted via Today.com, as caught a lot of attention, both good and bad. Parents of nonverbal children understand and sympathize, and a lot of autistic people are very, very upset.

The main concerns I’ve seen are that the video is “ableist,” “exploitative,” and essentially a Mommy Blog pity party.

And they’re right, to a point.

People have been arguing since the invention of the internet whether or not posting videos/photos of their children is acceptable. Some think it’s absolutely abhorrent, while others embrace the platform with abandon.

There is a lot of concern about Cooper’s right to privacy, and future humiliation he may suffer because of his mother’s posts and videos. I, myself, have faced similar scrutiny, particularly when I started this site, eight years ago. I take care not to post anything that disrespects or would embarrass my children, and from what I’ve seen of Kate’s work, she does the same.

My opinion. Yours may vary.

I think the situation here is a little more serious than whether or not Kate is indulging in self-pity at Cooper’s expense.

This is also about more than Cooper’s right to privacy.

This is about his life.

People like to say that special needs parents are “picked” for their children, or that “God never gives them more than they can handle.”

Those are nice tropes, but in reality, parents of special needs children are no different or better or more special than any other parent. Every parent wants the best for their child, and sometimes that journey is a lot harder and full of stress.

A kind of stress you can’t explain to someone not in it.

Even another autistic person.

I am autistic, and I am also a parent. A parent with four children, three of whom have special diagnoses, two of whom are on the spectrum, too.

I understand that to an autistic person, hearing a parent say “horrible things” about their autistic child is “ableist” and offensive.

I also understand, as a parent to autistic children, that hearing a parent describe their reality is hard to hear, but necessary.

This is a cry for help. For her, for her child.

Instead of vilifying her, let’s recognize that and be her village.

Kelly Stapleton was an integral part of the autism blogosphere. She was a bright and shining light, while simultaneously sharing her struggles with her daughter Izzy.

Her life was hard. Really, really hard. And when Kelli thought she had nowhere left to turn, and nobody left to help her family, she made a desperate decision that changed her family’s lives forever.

She tried to kill Izzy, and herself.

Kelli and Izzy

Kelli got to the point where that action seemed like a logical ending to their pain. To her pain.

I am in no way condoning her actions. Not at all.

However, I think we need to learn from them. There has been an epidemic of caregivers taking the lives of their autistic children/wards, most because they can’t find a way out of their world.

The autism world can be one of utter isolation. Family and friends back off; total strangers judge silently.

As autistic adults, we purport to want the very best for our fellow autistics of all ages. It’s time to put some walk to that talk. It’s time to reach across the table with an olive branch and a life jacket.

We simply cannot have it both ways. If we do not reach out and support parents who are desperate and in pain, they may break. Supporting these parents, instead of ridiculing and criticizing them, IS supporting autistic people.

How can we possibly insist on putting the health and welfare of autistic people first, if we are not willing to help their caregivers?

We know best. We are their children, grown up. We know what our parents went through, and it wasn’t always easy. Would you have wished them to suffer in silence, or to reach out for a hand to hold or shoulder to cry on or simply a sympathetic ear?

We can do better. For Cooper. For Izzy. For every autistic child. They need our village.

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Twinkle While You Shake It

Posted by on Dec 6, 2016 | 1 comment

Twinkle While You Shake It

“Twinkle while you shake it.” 
“Ya Gotta Have A Gimmick,” from the musical Gypsy, engraved on my mother’s tombstone

“One never knows, does one?”
Fats Waller, one of my mother’s favourite quotes

 

A few days before my mother died, we went to the grocery store. The Giant Eagle, to be exact. My mother did not have the strength to walk, so we rented a wheelchair. The company providing the chair took their sweet time delivering, and my mother sat in the living room, on the couch, waiting.

She waited while I went to the gym to lift weights. To build my strength, mostly in spirit. My body was already strong from weeks of daily workouts, lifting and pushing and running away from the thing I couldn’t elude. I needed to be strong. I didn’t think I’d ever be strong enough.

She waited, and thought I’d forgotten.

She waited for the wheelchair, and thought they’d forgotten.

She thought we’d all forgotten.

We didn’t, we couldn’t.

Our adventure began at Skyline Chili, an Ohio institution. The food was terrible. She didn’t care. She didn’t even really eat anything, but eating wasn’t the reason she was there.

Then to the Giant Eagle. Like she and I did with her grandmother before, I pushed her up and down every single aisle. But my great-grandmother walked – tiny, frail, and stooped in her old age – and pushed her own cart.

My great-grandmother also lived past 100 years old. “All of the women in our family live really long lives,” we always said. Everyone always said. It was understood. A given.

My mother was 57 years old when I pushed her wheelchair through the Giant Eagle, touching things on shelves, discussing produce. We bought acorn squash.

No one really talked about the fact that 57 is not 100. No one talked about the fact that her parents were still alive. Her father’s brain had begun to succumb to Alzheimer’s, but still, he knew. “You were always the best shopper,” my grandmother said to my mother, on their last visit. Their last time together on Earth.

I watched my grandmother try and reconcile the situation before her. She wrung her hands as she sat next to my mother’s hospital bed, set up in the den. Her daughter’s deathbed. “You were always the best shopper.”

There is no higher praise in my family. My clan of women who take bargain shopping as seriously as some take final exams. My mother was the oldest of four daughters, who mostly had daughters. Except my mother. She had but one daughter, and two sons. The oldest son married his high school sweetheart, so she quickly became indoctrinated into the family obsession. Shopping is serious business. The biggest bargain is worn like a crown, wielded as a trophy.

My mother once bought me an Armani dress for 99% off. $5. We joked about framing the tag and receipt. I wish we had.

My grandmother didn’t know what else to say. I didn’t know what else to say.

My aunts, my mother’s three sisters, came with their parents on that visit. To say goodbye. I have no idea how they got there, or how they got home. They drove almost four hours, from Indianapolis to Columbus, and I still don’t know how they did it. They came in a vehicle that my mother’s cousin (essentially a fifth sister) drove. But when I think of being inside that van on the trip to and the trip from visiting my mother, their big sister, their firstborn… my mind breaks.

That was the worst day of my life. Not the day my mother passed; that day ranks second. I am empathic.  The sorrow was too much to process.

My mother somehow rallied, and lived for two more weeks. I’m looking at the calendar now, not believing what it’s telling me. I thought it was three weeks. It felt like three weeks. It was two. Eleven days.

Eleven of the longest days of my life. Eleven of the shortest.

Eleven days spent with my brothers. With my mother’s partner, David. Her love. With my mother and David’s dog. With my mother.

We watched movies. We watched family slideshows. We ate a lot of bagels, drank a lot of beer and gin & tonics. We celebrated life and dreaded death. We slipped into a temporary normal. I tried not to cry too much; I didn’t want to upset my mother. I screamed into a washcloth in the shower.

She knew she was dying. She talked to us about dying things: her will, her belongings, her wishes. Her fears. She decided she wasn’t going to die until my younger brother turned 30. In two more years. She eventually accepted that it wasn’t going to happen. She rejected any moves to make her a victim, a patient. She remained my mother, our mother, until the end. That was important, that was her job. Our mother.

The night before my mother died, we knew it was coming. I don’t know how we slept. I don’t know how I slept. The sound of her body dying filled the house, filled my brain. I took xanax. I read Harry Potter. I waited.

The morning my mother died, we took turns sitting with her, having our last moments, not leaving her alone. We didn’t want her to be alone. Eventually, we all ended up at the kitchen table, talking about breakfast. Death stops for nothing as mundane as hunger. We joked about how we had nothing to eat, how when someone is dying, people are supposed to bring food. We had overflowing amounts of food for the previous few weeks, but on this day, this most important of days, we had none.

It was 9am.

We were all at the table, out of her room, for about five minutes. Five minutes.

In that five minutes, my mother died.

She did not want us there as she left. She wanted to remain my mother, our mother. She took the last bit of control she had, and exercised it.

She left on her own terms.

In the silence that followed, I looked around.

On the kitchen counter sat three acorn squash.

 

my mama as Roxy in the musical Chicago

my mama as Roxy in the musical Chicago

Judith “Judi” Lyons Kremer, 5 August 1943 ~ 6 December 2000

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Turning Over A New Leaf

Posted by on Sep 7, 2016 | 0 comments

How is it that fall just suddenly appears? Spring comes gradually, slowly revealed as winter loosens her grip on the earth. Summer takes over little by little, until our days are mostly warm and beachy. Even winter creeps in, as the winds get colder and the days get darker.

But not fall. Something happens right around Labour Day, and even when I’m looking for it, I miss it. One day we’re at the lake, cooling off in the water and trying to eat our sandwiches around the inevitable sand, and the next, it’s cooler. The shadows are longer in the afternoon. Cravings turn to baked goods, apple cider, and, yes, pumpkin spice (which, let it be known, I only appreciate in pumpkin pie and pumpkin bread).

Fall just… falls on us.

Which is kind of how time has happened for me. I got my autism/Asperger’s diagnosis just over two years ago, and I took a bit of a break from here to regroup. And now it’s fall, in 2016, and it’s been two years.

Fall is my most favourite season, so it seems fitting that it serves as the backdrop to my return.

I started this blog/website in March of 2010 as a way to share stories about my hilarious, autistic, then-four-year-old son. I wanted to show the world a face of autism they may not have been familiar with, and a family that functions on a different wavelength.

I think I’ve more than accomplished that, and today this blog is six and a half, and my son is just about eleven. He’s still quite hilarious, and now very much a tween. I still have stories to tell and experiences to share, but now they include myself as well as Jack.

As the fates would have it, Jack is homeschooling this year (a story I’ll share in a separate post), so there will be a lot to tell. There is also a lot to share about myself, my journey to a diagnosis, and how I came to finally know myself completely.

I hope this post finds you well, and I look forward to a long future together.

Namaste

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