The Dance of Motherhood – Mother’s Day 2015

The bedroom door creaks open, spilling in the unwelcome light from the hallway.

Instantly, I’m awake. A glance to the bedside clock. 3:21 AM.

“Ummm… Mom?” comes the loud whisper of my daughter.

And I know.

I know in the way that every mother knows what to do when a door opens in the middle of the night, and a child’s voice asks for Mom.

My husband twitches in his sleep. I stumble out of bed, over the basket of neatly folded laundry that somehow never makes it into the dresser across the room. I go to her, moving in the familiar dance of Motherhood. She is my youngest of three. There have been many night whisperings and cries for help before this. A terrified toddler with a bad dream to share. A feverish forehead. A cautious babe seeking shelter from a booming thunderstorm. They come to me, and I go with them.

Two hours later, her hair washed clean of her sickness and her body smelling like baby powder, she crawls into her freshly made bed and once again closes her eyes.

The floor needs to be scrubbed. And the bath tub.

There is laundry to do. Lots and lots of it.

Downstairs, I notice the empty bottle of two-months-outdated pineapple juice sitting on the counter. I’d cleaned out our minibar fridge earlier, and the half full bottle had gone in the trash. Yet here it is, empty.

Abandoning the overflowing laundry basket, I shoot off like a world-class sprinter. Up one flight, two flights, three. In my son’s room on the third floor, I see his oversized water bottle on the floor, empty. The foul pineapple juice is gone, and he is in bed rubbing his stomach. He does this… with whiskey sour mix, lemon juice, and even once with vinegar. I clean out the trash can and place it near his bed in preparation for the inevitable sickness.

As the sky lightens with the first sun’s rays, I settle in for what I hope is a few more hours of sleep.

Later, at a more reasonable hour, the plans to attend a family outing will be canceled with a tired-yet-familiar-to-everyone apology, my well rehearsed Sorry-But-We-Can’t-Make-It speech.

Motherhood may not be for everyone, but I love it.

I love them.

I wouldn’t trade my life as a mother for anything.

This is my life. This is my family. This is my day.

Mother’s Day.

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Explaining Autism, A Dialogue

Ready or not, today was the day.

For almost seven years, I’ve pondered and prepared and waited for the subject to come up.

AUTISM.

She didn’t know it has been a part of her life from the day she was born. Even before that, since autism was the major consideration in planning whether or not we would conceive her. We had reviewed statistics and debated. What if…?

Ultimately, we decided that we could handle whatever life handed us. And here she is, asking The Questions.

The fact that it took her nearly seven years to ask about AUTISM tells me that although this has been a natural part of her life, now she is becoming more aware. Aware of the sign language and PECS symbols. Of the in home support staff. Of tagging along to the endless doctor’s visits. Understanding from before she could crawl that she must never touch The Medicine. She now sees how our family is different from other families.

I must say, the build-up to this moment was significantly more grand in my mind’s eye than how the interaction, all two minutes of it, actually played out.

Miss Bee: Mom, why does my brother need you to help him so much? And why does he take medicine?

Me: His brain is different from other brains, and sometimes it doesn’t work exactly the way he needs it to work. The medicine helps with that, but it doesn’t completely fix it. The way his brain works is called AUTISM. He’s not the only one. Lots of people have AUTISM.

Miss Bee: (without skipping a beat) It’s too bad we can’t go on The Magic Schoolbus and go inside his brain and make it work. Then he could talk. And he wouldn’t have to take medicine.

Me: Maybe sometimes he wants his brain to work like everyone else’s brain, but the AUTISM also makes him special in a lot of ways. Like how he is really good at computers. And how he makes such amazing art.

Miss Bee: Yes. Maybe we could call The Justice League to have Batman go inside his head and give him a Brain Zap. He could zap it and my brother could talk and not take medicine, but he wouldn’t zap the computer parts. Or the art parts.

Me: Hmmm… (debating a philosophical discussion with a six year old…)

Miss Bee: Can I have some chicken nuggets?

Okayyyyyy then.

That’s enough ‪#‎AutismAwareness‬ for one afternoon.

Making Progress

Forty years ago we did not see people with autism in the community, because most of them were locked behind walls of institutions from an early age. Today, they are living in our communities, which are also their communities, and teaching us all exactly what they have to share with the world. That’s progress.

I am a believer in awareness that leads to education and acceptance. When my son was younger, I harbored some negativity about the public jumping on board for one day/month every year and then disappearing the rest of the year. I thought it was a way of making themselves feel good. Now I see that there is nothing wrong with that. If acceptance starts with one day of them feeling better about themselves, so they want to continue to raise awareness, then so be it. That’s progress.

My son is now 20, still non-verbal and severely autistic. If the world can look at him when he’s jumping and flapping in a grocery store line and realize that he has autism, and that through his flapping he may be expressing that he is happy or overstimulated, then he may be able to navigate his community and forge relationships more easily. That’s progress.

It’s not a perfect world. People with autism and other disabilities continue to be excluded, bullied, and sidelined. Wearing blue and displaying blue lights won’t solve everything, but it is the beginning of our world moving toward acceptance. My wish for my son, and for those who are on this journey with us all over the world, is that we continue along this path. In the past half-century, we’ve gone from locking people with disabilities away because we believed they had nothing to offer, to celebrating that they exist. That’s progress, my friends. Progress.