Motley Crew

IMG_3667

We appeared to be a motley crew at first; two middle aged moms, a young girl, a teenage boy, and an older gentleman. And yet we’d all had our lives changed by some of the same people.

Aidan and I were in the waiting room at the orthotist’s office anticipating new foot braces and a lift to eliminate his leg length discrepency. In walked a young girl with a tiny walker and pretty pink glasses. She and Aidan sized each other up. Aidan was certainly familiar with her walker, having one of his own yet much taller. He gave her a big smile. The girl’s mom jumped right in with introductions. She spoke directly to Aidan, asking how old he was. She encouraged her daughter to tell him her name.

I’ve received several encouraging emails recently relaying to me that people feel more comfortable interacting with people with disabilities after having read my blog and knowing that “hello” is usually the best place to start. This is why I write. With the flow of conversation in that waiting room, I understood the seeming awkwardness is easy for us because we’re in it, surrounded by the need to direct and facilitate conversations all the time. It was nice to have it feel so natural.

This sweet girl received her new glass slipper, just like a princess. No strange, medical apparatus in her mind. Just a very special shoe that makes her a very special girl. I so want her to remember that different can be wonderful and every special girl can be a princess if they want to.

The mom and I started talking about our medical teams. She prefaced by saying she has the best team ever and when she named exactly the same people on our team, I knew she was right.

Yes, this one taught Aidan how to walk; one foot in front of the other for months training his brain that this is how you do it. She changed our lives.

Yes, this one gave Aidan independent mobility by promoting his powerchair driving. She changed our lives.

And yes, this one we trusted with difficult surgical decisions, and he gave my son a new body. He changed our lives.

Into the room walked an older gentleman with one leg and a walker, just like the princess’ and Aidan’s.  Aidan stared. The little girl asked her mom why he has one leg. She didn’t skip a beat. “I don’t know. Would you like to ask him?”

The gentleman sat down and told us his story. He was at the orthotist today to receive his new prosthetic leg. I’m not sure Aidan and the princess knew what to make of it all but they certainly appeared willing to receive this important information.

The UPS man walked into this small office and patiently maveuvered his way through all of our wonky selves, marking this exceptional moment as typical in our world. We all went our separate ways.

Aidan and I headed into our appointment. What has always been somewhat routine now felt so important. Our orthotist has used the perfect balance of science and art for years to help Aidan become who he is. Aidan is a walker. He needs these braces to walk. My boy walks. He drives too. It’s all quite amazing.

As we finally left the office, I glanced at the closed door, the one I knew had the parallel bars in it. I noticed the other orthotist enter with a prosthetic leg. I’m sure there was a healthy amount of anxiety and excitement in that room. Quite possibly there was pain or discomfort as well. But I had goosebumps knowing what was happening. In the course of my very mundane day, a life was being changed.

A princess, a teenage boy and a man with one leg walk into an office…..as they have so many times before….and bit by bit, then all of a sudden, their lives are changed.

Food for Thought

IMG_3341

Food For Thought – October 27, 2014 Edition

Falling Sickness - on The Mighty – A powerful photographic essay about people with Epilepsy

The Life Not the Lack – on She Loves.

In a perfect world, these parents would respond to their children’s questions, instead of having me do it. There’s nothing wrong with her, honey. Why don’t you ask her what her name is? 

Of course, there is something “wrong” with my daughter’s muscles, but she is still a child, with a name and feelings and eyes that see. When we peruse the “wrongness” in her body, we tell her what’s most important. Satiating curiosity. Knowing. The lack. The brokenness. We all know these are not the most important things. She is important.

An Open Letter to You From a Mama of Kids with Special Needs – on Five Kids is a lot of Kids

Grief and hope make for awkward companions. Awkward lovers, never quite sure where to put their hands. Always bumping teeth. And yet, because the grief abides, I work to make room for hope, for without hope we are lost at sea, adrift and alone.

*****

And what have you read or written this week?

Standing in the Way

Aidan communicates in many ways but using words formed by his mouth is not one of them. His iPad is one of his primary tools of communication. He has long understood cause and effect and has shown intent to communicate, or he reaches out to push buttons. Buttons that say what I want them to say. His app is easy to use and allows him to participate in class and make requests at mealtime.

Here he is telling his dad what he did at school today:

IMG_7022

Since knowing Aidan, really knowing him, what he’s thinking, how he feels, what he needs, has been one of my greatest sources of grief, I’ve always felt a bit uneasy about putting words in his mouth, or limiting what he can say.

I’ve had my eye on a different speech app for Aidan for quite some time. It makes sense to me. All of the words stay in the same place, just like the keyboard I’m typing on, so the body and brain remember where they are. It comes chalk full of words already so I don’t have to choose words for Aidan. But it also leaves space to program new words that might be special or specific to him, like the names of our family.

It makes sense to me. It was half price last spring and I almost bought it so I could learn how to use it and possibly introduce it to Aidan.

Almost.

But I didn’t because in the end I thought it would be too complicated for Aidan. There are just so many words and it might be hard to learn. The buttons are so small and it could be a challenge since Aidan already has fine motor issues.

Do you know what else is complicated and requires complex cognitive function and decent motor skills?

Driving a power wheelchair.

When Aidan first tried a power chair, he clearly understood that he was operating it. However, he had to figure out how to steer it so he wouldn’t bump into walls and run over his friends. It took time to learn. Of course it did.

He drove it for three months before we had to make a purchasing decision. I came very close to NOT choosing a power chair because, though he was learning, I wasn’t convinced he could master it.

I shiver even as I type this.

Aidan drives his chair like a boss. He goes in and out of small spaces without a scratch (mostly). He follows his teachers’ directions (sometimes) when it’s time to change classrooms. It gives him the independence he deserves. His chair allows him to participate in his community and even communicate about where he wants to go.

Without it he couldn’t explore at the beach:IMG_3563

Or go for a walk with his dad

IMG_3059

Or shovel the driveway (whatever with child labor laws)IMG_6509

Or, um, operate a chainsaw?

10502067_773449352707193_8990657900491462608_n

I was almost a stumbling block to all of that freedom and adventure because I didn’t believe in my son. Because I almost didn’t have the patience to watch him learn.

Everything with Aidan just takes so much time and effort and belief and energy. I want instant gratification probably more than he does. But I’ve seen how work pays off.

So I won’t stand in the way again.

I bought Speak for Yourself last week. It will take time for both Aidan and I to learn it. Of course it will. Like driving into walls, he may miss the buttons at first. Like steering in big open spaces, he’ll have the chance to press lots of words that make no sense. Like being redirected when driving too close to someone, he’ll have pay attention while I show him where specific words are located.

It’s a process and I have no idea how long it will take to make any strides at all. But I know that Aidan is smart and I believe in him.

I’ve been surprised before and it changed all of our lives.