Tag Archives: joy

Posted on by

These are the moments I thank God that I’m alive

This is, without a doubt, the worst photo I’ve ever used on the blog.

Owen, part of the chorus

It’s also the ideal illustration for the post. Photography is a study of contrasts, usually dark vs. light. This picture, as grainy and out of focus as it is, is a perfect contrast with how sharply poignant and clearly — starkly, even — beautiful it was to experience my son dancing on stage in real life.

Seven-year-old Owen (in the light blue long sleeve shirt) has never participated in a group performance or project at school. Christmas concert? Mute. End-of-year concert, ditto (though he did execute turning off the lights on his assigned cue.) When his class collaborated on an art project for a PTO auction, and the teacher documented who painted every flower, every cloud, every leaf on a tree, Owen’s name was missing from the list.

I was unprepared for the visceral pain this inflicts. I’m not much for group projects myself. When I was a reporter, I never wanted to share my byline. But repeatedly, there I’ve been, the only parent not straining for a better view from my folding chair. Because there’s nothing to see. My child isn’t performing.  Instead, I sit there, my heart breaking.

At last week’s concert, a field trip, I sat beside him. The singer at the environmentally-themed concert invited students to join him on stage by birthday. January, February, March, come on up, he said. Then April, May, June. I held my breath.

“July, August, September birthdays, come on up!”

Kids stampeded for the stage.  “Do you want to go up there?” I asked.

Owen hesitated a second.

“Yeah!” Trailing the stampede, he got up on stage. And he did what the other kids did, pretending he was compost, of all things, jiggling and breaking down to lie flat on the stage, then bouncing back up to repeat.

And from my folding chair, I leaned forward and watched and cried and felt the thousand little pieces of my heart knitting back together.

These are the moments I know heaven must exist.
These are the moments I know all  I need is this
I have all I’ve waited for
And I could not ask for more.

- The letter T brought to you by Daily Drop Cap.
- Photo courtesy of Angela Stricker


Posted on by

Turnabout feels really good

While drying my hair after my lap swim this morning, I noticed a girl I’d never seen before in the locker room mirror. A girl with Down syndrome. I quickly averted my eyes back to my own reflection, anxious not to seem like I was staring.

She took a spot in the same row with my locker, and a moment later, when I shut off the hair dryer, I noticed she was talking.  It kind of looked like to herself, but I wasn’t sure. “Excuse me?” I said, tentatively.

“Oh nothing.” She shook her head and looked down. Then, her excitement getting the better of her, she burst out, “Today’s my Special Olympics.”

“That’s great!” I said. “What stroke do you swim?”

“Freestyle.”

We chatted a bit more. I found out it was her second year competing, she swam two races, she’d been practicing really hard, and she was thrilled to be there today. I wished her good luck and to have fun, and left.

Outside the locker room, I recognized a co-worker among the other athletes and parents milling about. We were chatting when this same girl came out of the locker room and up to him. She was suddenly worried about something. My co-worker reassured her and sent her back into the locker room.

“Was that your daughter?” I asked, and then related our conversation, and how excited she was.

My coworker smiled as big as his daughter had. And so did I. It was the first time I’ve had a chance to give another special needs parent the kind of positive feedback about their child that so gladdens and gratifies me when I’m on the receiving end.

Sometime in the first year after I became a mother, I remember feeling like I finally understood the motivation of the human race — the drive to expend so much effort to nurture the next generation. In plainer terms, I suddenly got it when people bragged about their kids. And I wanted to listen, instead of finding a way to shut them up.

After finally gaining that entree, since entering the tribe of special needs parents a few years later, I’ve had to struggle mightily with the world’s tendency to focus on my son’s ASD traits/issues/challenges/pick your euphemism, I can damn well read between the lines. Can we please, for once, talk about strengths?!

Everyone knows the old aphorism, “If you can’t say nothing nice, don’t say nothing at all.” I offer this update: “If you can say something nice, speak up.”

Go on, go ahead. Make someone’s day.

– Drop cap courtesy of Daily Drop Cap.

 

Posted on by

Taking back April

April. Again.

Since my dad died in April 10 years ago,  T.S. Eliot hasn’t gotten much argument from me about it being the cruelest month. Two Aprils ago was when we started down the path that led to our son’s diagnosis with autism. Then it turns out April is in fact Autism Awareness Month. (Gotta say, I don’t think much of these awareness months when you live it 365 days a year. But I digress.) Plus it’s got April Fool’s Day, which seems more about humiliation than humor, and all those April showers.

This year, I’m on a mission to take back the month of April. Starting with the whole autism

Me and kids

ASD + 2 NTs

thing. The picture above captures in that worth-a-thousand words way, how people with autism, like my son on the left, differ from neurotypicals, like me in the middle and my daughter on the right. Owen’s not looking at the camera, despite being begged, coaxed and cajoled at the time of the shot. His gaze is fixed on something else. He looks just as happy as Audrey does (which frequently isn’t the case and is another reason I like this picture.) But his mind’s simply not with the majority on the matter at hand.

Many times this is frustrating beyond belief. But when I try to manage to step back and look at the big picture of parenting a child on the autism spectrum, this is what I see. A happy boy, whose view just happens to be a little askew from mine.

Drop cap courtesy of Daily Drop Cap.