Single in Stimville - Day 5

They can smell it. Like so many other animals, your children can smell the sign of weakness and strike at the soft underbelly of your psyche. Why, you might ask, would they do such a thing? If I had that answer, I’d feel like I had unlocked one of the great mysteries of life itself.

This was supposed to be the easier week, the one where finals were over and grades were in and I could slowly slide into a less hectic routine. Even maybe, just maybe, find a moment to myself in the studio. But alas Rob’s job heated up to the point of working 14 hour days. Leaving at 8am and getting home 11:00pm exhausted and in no way prepared to deal with the boys in the wee hours of morning. We had, in fact, a nice run of nights where they slept through to almost 7am. Enough nights in a row to let my guard down, and pretend that they were somehow past all that. Hahahaha (insert evil laugh here).

If you’ve never experienced 2am in Stimville, I’ll only briefly describe it.. Nathan and Xander both have an equally annoying, but differing verbal stim. Nathan will say “eeeeeee”, at a pich that would bring any dog to its knees, repetitively for – well, hours. Xander decides on a nonsensical phrase that he too will repeat with the frequency of a metronome. “a moooo ga gee”. Put these together while I contort my body to fit into their little bed and– voila, Stimville at its best. It teaches one a degree of patience and stamina that you had no idea you were even capable of. I think about people who have been tortured, and for the most split second can imagine what it’s like. By hour two (and yes, I do wear earplugs) I can’t imagine surviving another moment. Nathan finally lies down, Xander follows a short while later. Silence, at last.

But here’s why I really wrote this. I am amazed how fast it fades away. Those boys wake up in the morning to an exhausted mother who would likely allow them to eat potato chips for breakfast and run naked though the yard if they would just allow me a cup of coffee. A huge smile appear on their faces and proceed to do something completely goofey and amazing. And like the Grinch at the end of the story, my heart grows three sizes that day. For all the rough times, the moments of joy weigh so very much more. Wouldn’t change them for all the coffee in the world.

I’m officially off night duty tonight when Rob finishes work for the week. No longer single in Stimville, I will not be surprised that they’ll sleep through the night, for there will be reinforcements and they smell that too!

  

aWEARness

I often find myself in the world outside our cozy, accepting, petri dish of a home surrounded by those regular folks that can’t see what seems so very obvious to me. My kids are different. Different for a reason, not just shrieking, running, chewing, misbehaved little monsters. Mind you, they can be all that too, but most of the time they are just autistic. I have always been very open about the boy’s diagnosis and when we are out I will often share that information with a stranger when it seems like an appropriate thing to do. As an educator, I am pulled into those teaching moments like a magnet to the pole. But many times I am running through the store, out on a playground, or in a crowd where making some “don’t mind him, he has autism" statement seems rather bizarre. And in those moments, it occurs to me that the behaviors the outside world observes could be so easily explained with an ‘A’.

As I began to design a t-shirt that would both identify their autism and celebrate who they are, I couldn’t help but think about The Scarlet Letter and the implication of wearing one’s sin pinned on your chest. In the classic novel, that ‘A’ shed light upon one’s secret, forcing the public judgment that might otherwise be unseen.  Would I be doing the same to my children? Am I pinning their ‘A’ on them as an identifier of their private diagnosis? Or does the ability to display their brand of ‘A’ do the exact opposite – ending a judgment before it even begins? Delivering some sense of understanding.

Autism has never, and will never, be a whispered or shameful word in our house. I wish for them to grow up in the knowledge that autism is part of who they are, as inseparable as the wild curly hair and big bright smile. So maybe, just maybe, those people on the outside will glance at us for all those reasons and read a t-shirt… and the teaching moment is quietly complete.

Awareness + Tolerance ≠ Acceptance

I feel compelled to write today being National Autism Awareness Day, leading off the full month of awareness. Snipits on the radio and articles in the paper, walks to raise funding and special days at the zoo. All these things whirl about in the public eye for the next 29 days. But I have to wonder what we want the world to be aware of exactly?

I had one of ‘those’ moments this week. When a small grain of sand is inserted into my gut where it gathers strength and keeps me up at night. Nathan and Xander have been at a new school since mid January. It’s a tough transition to be new in the middle of a school year to begin with, but for them it was a rougher start. Days of tears and tantrums as they try and figure out their new surroundings. Slooowly, they adapt. Most changes for them come slowly, hence the term ‘delay’ when people describe Autism. But on Monday I dropped them off and they went into school, both their therapists in hand, with little drama. The director of the program was in the lobby and I stopped to chat.

“I’m getting better reports”, I say “I think we might be turning a corner.”  She shrugged a bit and looked at me, “Well, I haven’t heard them lately.” She said with tone that left me uneasy. And then, I said it….. “I’m sorry they are so hard.” I cringed nearly the moment those words exited my lips. 

The gain of sand had been planted.

What was I sorry about exactly? That my children are different? That they have Autism? That others might have to accommodate them? After days of fretting , I could finally put a name on that grain of sand- it was called tolerance. I don’t want my children to be tolerated. Awareness is simply not enough. We need to teach acceptance. Acceptance for who they are in all that they bring. Given the briefest of moments you cannot help but see the joy in their eyes. I’ve met so many, many people who have opened their hearts to us, people that have changed our lives. Yet, there are still many that just cannot comprehend what a comment like this one, or a look across a room, can do a parent. I don’t wish that feeling on anyone. To those people I say open your eyes, see these children for who they really are and your heart will follow.

I will never again apologize for my kids. Sure, if you invite us over and we break something… but that’s different. But to cower in the face of their differences – no way. And oh, yes – I am looking for a new school.

'CLICK'

As an educator I spend much time thinking and experimenting with how to deliver information in order to get the ‘click’- that magical moment when your students ‘get it’. The bell curve tells us that there are always the ones who get it even before you finish the lecture, and those who will struggle after you’ve explained it a second or even third time.  My discipline of being a studio professor means that much of my teaching can be down and dirty technical information on just how to accomplish a task. If they can’t get that part down, it is quite difficult to take them to the conceptual level of art making where they ultimately want to be.

Being a parent of children with autism also makes me focus on that same ‘click’. Many of those who parent, or have close relationships with children on the spectrum, wonder if our kids will ever have the neurological pathways to make certain tasks click in their brains. We struggle through therapies, change their diets, and continually try new approaches hoping for the magic moment. And when it comes, as it did for us this week, do we know any more about that magic then we did prior?

This week Xander began to talk. Not in sentences mind you, but he has definitively made the connection that a word equals an object or action that he desires. You could almost see a sparkle in his eye like that pathway had just lit up like a circuit board in his brain.  Suddenly he’ll repeat almost any single word you say when he wants something.  We went from a 3-5 word vocabulary to laughing at the end of our therapy session when he said cracker, cookie, run, outside, book, ball, bubble, come….all in a 30 minute block of time. Yes, at 3.5 years old we still have a long way to go, but today- we ‘clicked’!

The truth is, however, that I have no greater insight to that moment as I ever did.  I have no idea whether it was one therapy or another, or simply his time. My role as an educator and my role as a parent remains the same: to bend and twist and manipulate the information in any means possible to find the magical click. Because when it happens – there’s just nothing else like it in the world.

Why I'm Thankful for Autism

Why I’m thankful for Autism

A diagnosis changes your life, there is no doubt about that. Ours came when our twin boys Nathan and Alexander where just about to turn two. It wasn’t a surprise. You don’t go visiting developmental pediatricians unless you suspect that things have gone awry. But the shock and sadness is there just the same, along with fear and guilt and other emotions that hit you like a tidal wave.

But that’s not what I am writing about today.  This is about being thankful. 18 months have passed since that diagnosis and our lives are full. Our house is full. On any given day our door opens at 8:30am and a small caravan of therapists tromp into our smallish row house and set up camp for a few hours or more. We gave up my studio space to create a therapy room that looks more like a preschool classroom.  Easels, therapy balls, a trampoline, books, toys, charts, art supplies, and more. More than one room ought to fit… but it does. These people who make the daily stop in our home have become so much more than just therapists who sit with my kids and teach them many of the skills other children know innately.  They are extended family. Our “village” as they have heard me refer to them.  We exchange tips on the boys, talk about our lives, have a drink now and again, and all meet together once a month to go over progress – yes, all 13 of us! And at my house, food is always served. When a team member is sick I worry about them. When one is off having a baby, I’m one of the first calls from the hospital after the birth. I’m thankful for these people that have entered my life that I would otherwise never have met, for they have enriched my experience as a parent.

And through this group, my vision has changed. All parents marvel at the development of their kids. The first words, when they roll over and learn to crawl. But when you have a child with a major delay, you slow down. I see progress at a micro level. When Xander looks at me in the eye and smiles or Nathan finally gets that puzzle piece in, I am ecstatic. I take little in their development for granted. I’m thankful for this slow gaze at my children. We look for the tiny triumphs everyday. They are often so small, or so subtle, that many people would rightfully miss it. But my new eyes see details in the world I may have once overlooked. And I was, as a matter of point, am a rather detailed visual person to begin with. 

I am an artist.  The detail of the visual world is something I have always marveled in. But even those artist’s eyes have now extended.  My personal work has investigated decoration and wearable art that uses lenses and mirrors to engage people in a visual dialog, the gaze from one person to the next, or one person to an object. Visual stimuli was paramount.  My fascination now lies in why our brain is attracted to one thing or another. The sensory process that makes children first desire an object, that then perhaps shapes later choices – even as an adult.  Color, texture, exploration of shape is now the focus of my work.  I’ll spend my research time developing creative objects in varying textures and materials for children with sensory processing differences. Not for my children per say, all children.  And while that making process occurs my own brain ponders the implications of my endeavors to my next body of art work. It will be new, a different path than the one I left a year or so ago.  I’m thankful to have my artist self grown and stretched in ways I never anticipated.

So on a dreary Thanksgiving morning, while sweet potatoes cook on the stove, I give thanks to a diagnosis.  Are there overwhelming days that feel like they’ll never end? Yes. Are there days I’m scared for my family’s future? Yes. But who doesn’t have that, really? Instead, today, I raise a glass of lemonade made from what looked like lemons so many months ago.

Happy Thanksgiving to all.