The Power of Connection

synapse |ˈsinˌapsnoun – a junction between two nerve cells, consisting of a minute gap across which impulses pass by diffusion of a neurotransmitter.

ORIGIN late 19th cent.: from Greek sunapsis, from sun- together + hapsis joining

I might be a bit of a brain nerd. The more I come to understand Aidan’s disability, the more I respect the brain and am awed by its power. Though it’s been the source of Aidan’s greatest struggles, it’s also displayed it’s complexity through his delayed development. I’ve been privileged to see it’s work in slow motion.

In the beginning, when I was first taking in Aidan’s medical issues, I considered them as all being connected to muscle tone. He was too weak to hold his head up. Then too weak to move much at all. He was too weak to do all that important sucking that babies do to strengthen their jaws and slim down their cute fat cheeks for later speech. While he’s learned to feed himself and move around, it all takes a lot of strength because of his low tone.

Now I see everything as connected to the brain. There’s the obvious, the seizures that interrupt his learning and steal his progress and put him in danger. But it’s also his brain that bosses his muscles, that has failed to give them the command to be stronger.

It’s a bit of a love/hate relationship I have with these synapses in Aidan’s brain that through a failed game of Telephone have left him broken but have also allowed him to be smart and independent.

These synapses in Aidan’s brain and all they’ve brought to my life have allowed me to connect with people. Here on the blog I share my stories, hear your stories, learn, and feel less alone.

I meet people for coffee. That’s actually my very favorite thing to do. I listen and say, “me too” or often, “wow, really?” and sometimes, “did you know..” and also, “wow – I didn’t know.”

Being connected has brought more than emotional support. I’ve talked through information regarding surgical procedures, meds, different professionals, and services. I’ve met my PURA gene family who are all connected because our kids have similar medical issues and physical features as a result of having variants on the same gene. This small joining together of ideas and stories and hearts and information is changing lives.

I’ve been talking through this idea of being connected with a friend who is an artist. She graciously put my thoughts into a few paintings. I’ve stared at these watercolors at length, always seeing news ways that colors and shapes pop and explode and sometimes wander away from their starting point changed. It feels like a perfect meeting of science and art and emotion.

Synapse – the brain connecting the body, our selves connected to each other, together impacting the world.

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Food For Thought

Food for Thought – April 6, 2015 Edition

When a Little Girl at the Pool Realized My Son Had Autism

“Here, get on the float, I’ll pull you,” “I’ll throw the ball, and you catch, OK?” Whoa! Was I really seeing what I was seeing? Was my son playing? Did my son finally have a friend? For about 20 minutes, until the little girl had to go, I got to watch two kids laughing and playing together, and for the first time ever, one of them was mine.

Jean Vanier, Untiring Advocate for People With Disabilities, Wins Templeton Prize

The next turning point came in 1963, when at the urging of a priest and spiritual mentor in Trosly-Breuil, Vanier visited people with disabilities who were living in psychiatric hospitals and other institutions. One of them reportedly asked him, “Will you be my friend?”

What Does Autism Awareness Even Mean?

Yet even on the bleakest days, your heart can soar with hope and love and pride. Maybe it’s a single new word or a bite of pizza; maybe it’s a full night of sleep or a trip to the grocery store without a meltdown. But it’s there; your very own autism awareness.

You are an autism mother and father, brother and sister. An autism grandma and grandpa and cousin and aunt and neighbor and friend. And if I could, I would send you a warm cinnamon roll with lots and lots of frosting.

My Walking Walker

Reposting today in celebration of Aidan’s Pura Gene sister Audrey, who got her first set of wheels this week. We watch with hope and excitement as she takes on the world in whatever way she chooses.

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Meet my son Aidan.

He’s a Walking Walker who Walks.

Yes, he walks with assistance and only short distances but still, he’s a kid who walks.

Aidan was born thirteen years ago with an undiagnosed developmental disability and low muscle tone. We worked hard to get his trunk strong enough to support his body, to hold himself up on his two feet and get his legs moving.

Aidan walks. And I’ve celebrated every step of the way.

And yet, he can’t get very far. He can’t explore his own environment of his own volition.

But I’m an Optimist. A Hoping Hope-er who Hopes. It’s my job as Aidan’s mom to hold the bar high for him.

And yet, that got in the way for Aidan.

When he was ten years old Aidan needed to be evaluated for a wheelchair. Yes, his physical therapist had advocated for one earlier (three cheers for early mobility) but I wasn’t emotionally ready.

He’s a Walker and a chair would make him look so….disabled…. like he can’t walk.

A wheelchair didn’t sound like Mobility and Freedom and Independence and Rainbows and Unicorns.

It sounded like failure, like defeat, like giving up.

My son would be relegated to a sedentary life and I would be the Quitting Quitter who Quit on him.

As I sorted through the many practical decisions about getting a chair – manual or power, could he propel himself or drive, could it be used across all circumstances – I got stuck on my feeeelings.

While I wanted to say no to a life of can’t and dependent and impaired, I almost said no to a life of exploration and self-determination and cognitive improvements.

This video chronicles our difficult decision making process:

(subscribers will have to click through to blog to view)

So now I’m the Preaching Preacher who Preaches early mobility and be brave mamas and be open to tough choices. But I’m still the Hoping Hope-er who Hopes because Aidan is still a Walking Walker who Walks and Drives and Propels himself and uses any means necessary to get where he wants to go.

Even to the cookie jar. Isn’t that what Smarty Smarty Pants do?

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Check out the factors we considered and the research that matters on our Mobility Journey page and share with others who may have questions.

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This post originally appeared on What Do You Do, Dear? a blog you should follow to learn more about mobility issues and see some seriously adorable kid pics.