Sunday, July 26, 2009

A New Dimension Opened Up 10 Years Ago Today

The Can't Contain It I'm So Happy Dimension.

Cate arrived at 7:23pm on 7/26/1999 and changed us forever. She made us parents, she redefined all points of reference for us, she shuffled and settled our priorities and she taught us new meaning in everything. Most of all, every single day, she reminds me to look for, indulge and radiate all that is good and joyful.

Happy 10th birthday, sweet Cate. You are truly the (lime green neon)light of our lives.

Friday, July 17, 2009

The Stare as Defined by Pollyanna

The stare. You get it anywhere from any age. It is more overt with children, but furtive and broken up by those that think the act of prolonged ocular focus is impolite, but who cannot resist stealing successive glances anyway.

It doesn't matter how obvious or subtle the differences for your child (the staree) are, if they can be detected at all, whether physical, social, intellectual... attention will be attracted. Unavoidable.

It feels like a judgement, like an insult. We are offended by these stares and the bold among us have some zingers to fling at gawking children and adults alike. We feel justified and even righteous having flung such. We tell our disability-parent friends how we stood strong and shook our fists for the team.

Or we shrivel and retreat, possibly gelling in a young mind the fledgling idea that maybe differences are indeed not to be celebrated, not to be tolerated, not to be witnessed.

It's been established that I wear cheerily-tinted glasses - sometimes one pair on top of the other (orange or lime green, for rose is just not my style). If I could braid my short spiky hair on each side like Pollyanna, I would.

I cannot say when or why, but at some point, these affronts - these stares - turned into questions for me. Questions someone either is afraid to ask or doesn't know how to put words to. Eyes on my child use to bring to mind the sizzling sound of a branding iron on a livestock rump. But now I see the arc of the gaze as an outreached hand. I can take the hand or I can shove it back. If I fling it back with my zinger or with my huffy or hurt exit, one part of the 'question' can be answered: yes, parenting of differences makes you bitter and forgetful of what it was like before disability became a focus of your life.

It's hard to take the hand. For me it's easier with kids because they aren't debilitatingly embarrassed when caught in a stare - backpedaling is a decidedly grown up reaction. With kids I see their shoulders unhunch with relief that the topic has been opened when I ask "Oh, you seem really interested in Addie. She loves meeting new people. Let me introduce you and then you can ask us the questions you have." Either that opens the floodgates of inquisitiveness or the child very simply decides it's now OK to try and engage with Addie. Either way, the great divide has been rendered less great.

I have not forgotten what it was like before disability stole through the door and sat it's larger-than-life ass on my lap permanently. Before, I was hesitant and uncomfortable when considering social interaction with a person with a disability. I did not ever know if looking away was better than staring or vice versa and I knew nothing of what was possible in between the 2 extremes. I had to observe an individual first to gather clues about how to approach in a way that would preserve that person's dignity. That is what manners are - we meet someone new and lean on manners to assure the other that you mean well. This is not simple when faced with differences in ability. The old standbys might not work, how do I convey my well-meaning? If I talk, can she hear me? If she can't, what are my options? If I just smile, is that patronizing? If she signs to me or speaks and I don't understand, it it OK to look to her caregiver or companion for translation? She doesn't look at me when I talk to her, is she hearing me or understanding me or not - which assumption is better to act on? She is on wheels, what if I slip and throw in a phrase like "just walking around" or "get up and go," will that offend? She is humming and flapping, do I talk as though she is not, or acknowledge it? And what does it mean, the flapping? Is she open to engage or not?

So many questions not fully formed at the moment, but there nonetheless. Staring people are curious, but it's also a process of assessing how to interact and communicate with the other, should the situation arise. It comes down to a desire to maintain dignity. As the parent of a child with differences, I can take a more active role in helping others understand how to fit my daughter into their social frame of reference.

It isn't easy to be new around my daughter. I understand that. Observation is often needed first. OK. Stare a minute. Then I'll take the hand extended, make introductions and answer questions, whatever words are used to form them. When the intention is clarity seeking, being politically correct is not a priority.

Closing the divide between my daughter and the speaking, neurotypical world is.

Wednesday, July 15, 2009

Not in Today

I'm not here, I'm blogging at Hopeful Parents today. Come check out my post. I am Insidout510 over there...

2 Per Bag

Wednesday, July 8, 2009

The Was Is Bug

Addie saw it first. As I was watering the newly planted annuals in the yard, I recognized in her the interested squat, cocked head and the beginning of a greedy swipe. She loves to watch insects and spiders, then "feel" them with a giant's heavy hand. The look of shock on her face is genuine when she discovers post-swipe her friends lying motionless and mangled on the pavement or deck boards. They just ruined all the fun by croaking under her loving but destructive affection. It's hard to teach a kid with a cognitive disability about fragility, about moderating interaction based on a durability assessment of the object/person first. Lenny never really caught on to that lesson, despite George's best intentions.

So I stepped over to the fence when I saw her rear for the swipe. I am taking as many opportunities as I can to help her understand when gentle observation will make things (beings) last longer or interact with her longer.

"Gentle, Addie. Just watch, don't touch."

I've also been taking photos of things outside she shows interest in for a slide show for her. Lots of bug and flowers, tree branches from the trunk's view. So I said for her to hold on, I'll get a picture for her.

She held on, knowing my camera was in my pocket as it usually is when I am with her. She waited. I expected to see a black ant or spider, certainly not anything with wings that surely would have taken off when her shadow darkened the perch on the fence.

But Addie had something a little more special to show me on our fence post:

She waited for something to happen. She reached again for it as I took pictures, but I stopped her in time. Eventually, seeing that it had my attention, rather than her having it, she sidled away, back into the yard to look for more sticks, bugs, standing water...

I watched it a long time. Movements were barely perceptible, but I believe we caught the cicada at the very completion of shedding the old outer layer. The photos do not do the color of the new look justice. The green framing up the ethereal wings looked almost plugged in it was so bright. But tender. You could see how delicate, how new, how fragile it was. And wet.

The cicada stood on it's old self, waiting for it's new self to dry, to grow sturdy and strong. I sat down and waited with it.

It, as everything does, reminded me of my girl. Reminded me of the differences between myself and her. When I shed something old, I cannot wait to get away from it, to kick it away violently, arrogant that the new me (attitude, skill, idea, whatever) is stronger and better than the old. That the old is useless and almost shameful. But of course there are times when the new isn't baked enough, strong enough. I look back for the old, but I've already destroyed it.

This cicada subscribed to Addie's method of change. Addie rests on the old skill (idea, milestone, motivation...), the tried and true, clearly strong skill while observing and waiting for the new to emerge stronger, complete. She reveres the old, clear on how necessary it is, how it is the mother of the new - the current new and the future news. She never forgets where she was and uses it to get where she's going.

Reluctantly, I left the old/new cicada to take Addie to music therapy. When we circled the red wagon back around in the driveway upon our return, the cicada had flown, leaving the old shell intact. You never know, she might need to come back to it.

Cicada song will start here in a few weeks. Addie and I will talk about the music they make using the sign we made up for ourselves - "old/new bug." We plan to try and record a snippet of the wing music for a new cicada page on her communication device.

Friday, July 3, 2009


As the 4th of July has smacked us with it's hasty arrival, I think of all the words and phrases that come with the red, white and blue: independence, freedom, potential, liberty, out with the old/in with the new, possibility. But for me, it's not just visions of flags, marching bands and sno-cones called up this time a year anymore. Another day now comes to mind.

Forgive me for the rerun, but that is what summer is for. Please come back with me to a day last summer. It's a turning point of a smaller scale than the original Independence Day. Like the original, thoughts of this new independence day incite triumphant tunes to herald, fireworks to splinter... in my world, anyway. Click the link below to rehash the victorious day with me on this holiday weekend.

Gauntlet Retrieved

Addie's scoop and kick are even stronger now. Many similar conquests have followed.

Be safe, enjoy. Take up a gauntlet for freedom's sake.