what a difference an a makes

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Please click HERE for today’s post.

except my name

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Judge: I want you to be very sure about this. This means you’re gonna walk out of here with absolutely nothing.

Tina Turner: Except my name. I’ll give up all that other stuff, but only if I get to keep my name. I’ve worked hard for it, your honor.

~ Tina Turner leaving Ike in What’s Love Got to Do with It

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“If you do decide to start your own blog, my one piece of advice would be to avoid using your name.”

~ a letter to a friend who was considering starting a blog

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There are a million and one reasons why I wish I hadn’t put my name on my blog. www.jesswilson.wordpress.com. Really? I mean, really? What the hell was I thinking? Or not thinking? I’d tried for www.diaryofamom.wordpress.com but it was taken. Next stop – full disclosure.

When I started Diary, I hadn’t the faintest idea of what I was getting myself into. I knew about as much about blogs as I did about semi-conductors or the Permian Period of the Paleozoic Era – pretty much nothing.

At the time that it all began, a dear cousin of mine had been seeking to adopt a child. It was a long, difficult, emotional process that led dolts like me who knew nothing about it to ask to a lot of oversimplified questions like, ‘Hey, any progress?”

No doubt out of the exhaustion born of constantly answering the same ignorant questions from friends and family time and again, she started a blog. Through her web page, she was able to update us all in one shot. She would write about the latest developments, pontificate a bit on the challenges of the journey and in the process educate and sensitize all of us. I can promise you that no one who ever read her (beautifully crafted) words will ever again say, “They have four children – two adopted and two of their own.” I was grateful for the education.

One day, I found myself gnawing on an article I’d read. I chewed on it for weeks, but it just wouldn’t let me go. The article blamed the skyrocketing numbers of autism diagnoses on its hypothesis that many parents actually seek the label even when it may not be appropriate. Why? Well, according to the article because it opens the door to services – especially in the public schools, that might not otherwise be accessible.

Despite the fact that I couldn’t shake the article, I couldn’t remember where I’d read it. It killed me that I couldn’t send in a scathing letter to the editor. I had a couple of choice labels for HIM (or her). But I realized that just because I didn’t know where to send it didn’t mean I couldn’t write it. And so I did.

“As the parents of an autistic child,” I wrote, “we spend so much time trying to digest the label, understand the label, avoid the label – trying to get over, around, and through the label, to God-willing find a way to some day no longer meet the criteria for the label. The label represents everything we don’t want for our children.”

(ed note .. I have since chosen to change my language to person-first, but back then I still used ‘autistic’ rather than ‘with autism’.)

The next time I logged onto my cousin’s blog I noticed the invitation. There it was, clear as day -

‘Start your own blog on WordPress today.’

It made perfect sense to me. I would publish my letter in a place that would allow me to send it in one fell swoop to all my friends and family. Perhaps they would gain a better understanding of where we were coming from when we talked about our struggles with labeling Kendall. Perhaps I could answer some of their questions all at once.

And so I put out my little shingle that day and opened shop on a quiet corner of the Internet, never thinking twice about using my name to do it.

After a week like this last one, that small detail is a glaring gaffe. I have so very much to write this week. So much that gnaws at me – much like the article that prompted my very first post. So much to share from our experience that I think could benefit so many of you out there in the ether. So much to purge from my system – the toxic doubt and the abject terror that drove me through the haze this week. I want it out. So much love, so much hope – the stories of so many good people who climbed into the mix with us and who leaned right into the wind. So much to say about the friendship that was forged in the fire – the one that had been here all along. So much to celebrate tempered by so much more yet to be done.

I could take out all the details, I suppose. I could write cryptic, round-about references and dance around the heart of the story. But if you’ve been here for a while, you know that’s just not the way that I write.

A gentleman contacted me yesterday about syndicating Diary. I wasn’t even sure what that meant. I’m actually still not sure what that means. We chatted back and forth via e-mail for a while. “We’re really only interested in your posts about autism,” he said. “We wouldn’t post give-aways etc.” I had to laugh. “I’m not a give-away kinda gal,” I wrote back, “Every day I give my heart and my stories; those are really the only things to ‘win’ on Diary.”

So I can’t tell half a story. It’s just not who I am.

I do hope that at some point I can find a way to synthesize some of the lessons we learned this week and share them. They are valuable to me, and I’m pretty sure they are universal. The most personal stuff usually is.

But in the meantime, I’ll have to find another outlet to process and purge and celebrate and lament. Because unfortunately, it just can’t happen on a blog that bears my name.

brenda

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One of the many benefits of writing this blog is that I regularly hear from so many amazing people. Some write seeking advice or resources, some write searching for solace and some simply write knowing that they will find the sympathetic ear of someone who has been there – wherever their current incarnation of ‘there’ may be. And once in a rare while, someone sends me a story that simply has to be shared.

Last week – or was it this week? God, this has been the longest week in the history of the world - I received one of those stories from a reader named Brenda. Brenda is a single mom of two boys, aged six and fourteen. Both of her boys have ‘high functioning’ autism.

I read a lot of stories about our kids. About their challenges and about their incredible victories. But the stories that get me – that really reach in and grab hold of my heart – are the ones like this. The ones that set the screen ablaze with the radiant love that permeates each and every word.

Kendall and I have a new routine lately. Call it a script if you must. We practice it every night.

“Kendall, what would I NOT do for you?”

“Nuthin!!”

“Kendall, what WOULD I do for you?”

“Anything, Mama!”

I’m guessing that whether or not Brenda has the same script with her son, he already knows.

Enough of my words, here are Brenda’s …

I hear the school fire alarm from the kitchen.  At first I’m not sure what it is– I have to go to the front window to figure it out.  They’ve changed the tone from last year.  I instinctively run out of the house toward the school.  It is only the second day of school and Jacob’s aide will be out of town until tomorrow—probably making his way home from a surfing trip in Cabo, outrunning a hurricane that is bearing down.  Jacob will be a mess.  There is no fire, but there might as well be.  For Jacob and others like him, the details really don’t matter. The fire is not the problem.

I start running. Even though the school is just down the hill from our home, it will still take me a couple of minutes to get there. I find Jacob cowering in the boys’ bathroom.  He is hiding in the back stall crouched against the tile wall.  He has his arms folded over his head and is covering his ears with his hands. I came here instinctively after I scoured the first-grade fire-drill lineup on the playground and he was not there. He must be in the bathroom. He goes to the boys’ room a lot—it’s fun in here—you can play in the sink. This is California. We are green here– but a sink is too tempting for even the greenest soul. Also, there’s an echo. As long as no one flushes a toilet, everything is okay.

I gather Jacob up and take him outside. His arms are still wrapped around his head. I carry him to the school garden and pretend to look for bugs. The alarm went quiet a while ago.  Everyone is back inside. It’s almost time for lunch.  The principal sees me on her rounds and signals that she will notify his teacher. I’m not sure if anyone is looking for him yet.

It will be a long time before Jacob will visit the boy’s room again.  I will have to pick him up from school and take him to the house so he can pee in the roses in our backyard during school hours, and I will have to promise not to flush the toilet until after he goes to bed if he goes potty number two indoors.

It’s just another day.

moving mountains

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Jess Wilson is … remembering the shaman who once told her that sometimes the only way to move mountains is one handful of dirt at a time. and wishing she could tell him to sk it cause she just doesn’t have that kind of time.

~ My Facebook status this week

In one of the first posts that I ever wrote, I talked about the place that I’d dubbed Overwhelmedland. The post was long and clumsy. And it was long. Trust me, it bears repeating – damn thing was LONG.

Over the years I’ve been a pretty frequent visitor to Overwhelmedland and I guess I had a lot to say on the topic. And as much as the post – like so many of my early attempts at writing – may have lacked art, it had a message. And this week, it’s been one that I’ve needed to hear again.

In the post, I reminisced about a presentation that I’d attended in college. The speaker was an Indian chief and the title of his talk was “Moving Mountains.”

He told the story of his ancestors who had been forced into unforgiving terrain and who were desperately (not desperately as in, “I desperately need a new pair of shoes to go with this dress, but desperately as in OH MY GOD WE’RE GONNA DIE) seeking a place to settle. He told us of the tribal chief who stood with his people at the foot of a mountain – their only hope for survival on the other side. He told us how the chief sought guidance from the Shaman.

The chief told the Shaman, “My people are doomed, for the only way out of these desperate straits would be to move a mountain. And one cannot move a mountain.”

The Shaman corrected him. “One certainly can move a mountain,” he said.

“How can that be?” the tribal chief wondered. “We are so small and the mountain is so large. There is no way that we could possibly pick it up. We are so weak and it so strong. There is no way that we could possibly push it. We are humbled by the great mountain, there is no way we could possibly go over it.”

The Shaman said to the chief, “You must look away from the mountain and turn your eyes to your hands. With your hands, you will move the mountain.” With that, he dug his fingers deep into the soil and laid a mound of dirt in the chief’s hands.

He had taken the first step toward moving that mountain, one handful of dirt at a time.

I’m moving a mountain this week, one small fistful at a time. With every pile of earth that I set aside, I hear the Shaman’s words echo, “Turn your eyes to your hands.” It’s awfully tempting to look up, but I’m doing my best.

I hope he won’t mind if I add a little something. I’m guessing he ain’t gonna know anyway as I’m fairly certain that Diary doesn’t get a lot of play in the Shaman community, but hey – you never know.

I’d like to add this …

“Turn your eyes to your friends, for together, you have many, many hands.”

I have been truly amazed by how many people have reached right in this week and started digging by my side.

I am grateful and I am energized.

And I’m convinced that we’ll move this damn thing.

One

Handful

At

A

Time.

photo credit Michael Greenwell from the Internet Encyclopedia of Science

buying the pony

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You know that little kid who walks through a store and says, “Oooh! Oooh! Mama, can we buy this? Oooh! Oooh! Mama, can I have this? Oooh! Oooh! Mama, I neeeeeeeed this!”?

That kid was never mine. Well, maybe ONE of those kids was mine, but not the other.

While I was never quite sure if Kendall understood the concept of shopping, even if she did, she didn’t have the language to ask for anything. And so, for many years, I had a child who simply didn’t ask.

Now, just shy of seven, my girl is getting the hang of it. The words are exploding. The sentences are flowing. The syntax is coming together. And she knows damn well that her Mama will turn into a big, steaming ball of spineless mush when she asks for something.

All those years of trying to guess what she wanted – of trying to sort through the clues and gauge reactions and hope that maybe, just maybe, she’d actually like something – all add up to a big pile of  ’Oh, sure baby, you want the pony? Of course, let’s go get you fitted for a saddle.”

Judge me if you will. Tell me I should be stronger. Go ahead. I dare you.

You do it.

You say no.

Let’s practice, shall we?

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Yeah, I thought so. The hay is in aisle three.

why

 

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We had a meeting at the house last night. A group of parents gathered in our den to talk about our children – to compare notes on their progress in school, to discuss services and strategies and to support one another in our efforts to advocate for our kids.

There was solidarity. There were tears. There so often are tears. There was anger. There was fear. There was understanding. There was frustration.

I was spent long before the meeting ended.

I walked away. I wandered from the den to the office and fussed with something on the desk. I ambled into the kitchen and rinsed a glass that didn’t need rinsing.

It’s so often the same faces at these meetings. The same people who take up the mantle and fight to make things right. They look tired. We’re all tired.

As the last parent left, I trudged up the stairs. My feet were heavy on the steps.

I need to learn to say no. No, I can’t host that meeting. No, I can’t write that letter. No, I can’t speak in front of the school that night. No, I can’t run that panel.

No, I can’t.

Why can’t I say no? It’s just one syllable. “No.” Seems easy enough.

Why can’t I say it?

This week had taken its toll. I was near tears. I couldn’t fathom that it was only Wednesday.

Why do I keep doing this? Why do I keep writing calling organizing hosting finessing praying checking hoping pushing (and pushing and pushing and pushing)?

Why?

I opened Kendall’s door. She opened her eyes ever so slightly as the un-oiled hinge announced my arrival. The room was bathed in the silvery grey haze from the light spilling in from the hallway. A gentle smile spread across her face as I padded quietly over to the bed.

I bent to her and put my cheek on hers. “Mama loves you, baby,” I whispered softly.

“Mama loves you too,” she whispered back. I smoothed her covers and tucked her favorite blanket under her chin.

I stayed longer than I should have. I knelt by the side of her bed and watched her sleep – her little chest moving up and down as her lungs did their work. I was mesmerized by the rhythm of sleep.

I stroked her hair gently, hoping not to break the spell.

I stood up slowly, quietly. I looked down at my baby girl, curled into a tangle of blankets, her slender little fingers wrapped around Prairie Dawn. Dead asleep, she was still smiling.

That’s why, I thought.

That’s why.

dance class – part one of a whole bunch

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Movement never lies. It is a barometer telling the state of the soul’s weather to all who can read it.   

~ Martha Graham  

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I’ve had a lot of false starts lately. My intentions have been good, but my time, energy and attention span have been flagging. Thus my draft box is full with the detritus of half-formed thoughts, meticulously crafted first paragraphs and single-line story reminders that have yet to be fleshed out.  

I paged through them this morning – turning them over and inspecting them like bits and pieces of sea glass. Some were junk – dusty and opaque – so I threw them back into the water. Some were jagged shards that I couldn’t pick up without slicing into my flesh. I left them where they were, trusting that time would soften and round their edges.  

One – just one – was clear and bright and precious as any gem – a group of pictures of my girl at her dance class. This should be an easy one, I thought. The pictures will speak for themselves. But then I remembered how much there is to tell you about the dance studio. And that’s when the run-on sentences started.  

Because I just can’t show you the pictures without telling you about my conversation with the director of the dance academy. No, I have to tell you that when I told her that I’d heard that they had been very welcoming to a friend’s son with special needs she’d said, ‘Of course. ALL children should have the opportunity to dance.” And I have to tell you that when I told her that we’d been searching for a place for Kendall to dance after the last experience ended in heartache she’d said – without a moment’s hesitation – “What if we bring in a second teacher to work with her as an aide? Do you think that would work?” And I have to tell you how I’d barely had words for her generosity.  

And I have to tell you how happy my little girl has been to put on her leotard and tights – just like a ballerina - and dance. Actually, I won’t have to tell you that part. I’m guessing you’ll see for yourself.  

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None of those moves above were actually related to anything the rest of the class was doing. Matt had warned me when I went in that ‘it may be a little tough to watch.’ He’d told me that she ‘tends to just kind of do her own thing’ and that it didn’t seem to have much to do with what was going on in the rest of the room. He knows me. He knows I can have trouble watching my baby desperately out of step.  

He was right, she did do her own thing. But for once it wasn’t tough to watch at all.  

Kendall dances to a different beat. Sometimes literally. And watching her – arms akimbo and legs flying faster than my little phone camera could focus – was pure joy. The aide will start to rein her in a little bit now – to break down the choreography for her in hopes that she can follow along. But even if she doesn’t learn a single step, it will not have been for naught.  

Sitting on the hardwood floor that night, trying desperately to capture the moment, I remembered why we’d pushed so hard to find a place for her to dance. And even in these grainy, out of focus pictures from my phone you can see it, can’t you? It’s like finding the perfect piece of sea glass, isn’t it?  

Because when my girl dances, however it may be that she moves, she is HERSELF and she is FREE.  

Thank you so much, C. For everything.  

ed note ~ Thank you from the bottom of my heart for the incredible comments on yesterday’s post. Your love and support for me and my girl held me up yesterday and you carried me through a day that might have been unbearable otherwise. I was humbled by your words and grateful (as always) for your presence in our lives. A million times – thank you.   

sometimes

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My girl was teased yesterday.

That beautiful, loving little girl in the picture.

Teased is the wrong word really. She was manipulated by others for their amusement. A little girl who she thinks is a friend preyed upon her.

It could have been worse. Much worse. It wasn’t.

Though it never should have been allowed to happen, it was handled well when it did.

I don’t think Kendall had any understanding that she had been set up.

If she did, she didn’t show it.

But these things take time to process.

I called my dad. Forty five years as a middle school principal offer a perspective I so often need these days. I knew what he’d say. I still needed to hear it.

As soon as I heard his voice, I was done for.

“Jessie, are you OK?”

I pulled over. I sat in the car and cried as the hard rain hammered the roof and drenched the windshield. It seemed fitting.

“It’s the reminder of her vulnerability that hurts the most, Dad.”

“I know,” he said. “I know.”

By the time I finally pulled into the garage, I was spent.

My sweet baby girl ran down the stairs as I came in the house.

Her hair was wet from the shower. She wore her favorite pajamas – the top now two sizes too small. I don’t have the heart to make her retire it yet.

She came to me, so I dropped to the floor and sat down with her right in front of the door.

We looked at each other for a moment – wordless. She searched my face. I searched hers.

“What are you sorry that you did that?” she asked. Her little brow was furrowed into her patented expression for sad or sorry.

I didn’t answer right away.

I knew exactly what she was asking. It’s become a painful script. But there was so much more that I was sorry for.

“About the ballet slippers,” she said. “What are you sorry that you did that about the ballet slippers?”

“I’m sorry that I yelled that day, baby,” I said for the God knows how many-eth time. “I’m sorry that I didn’t understand.”

“You’re sorry that you yelled at me,” she said as she crawled into my lap. “About my ballet slippers. And then I had the white water.”

Four years. It’s been four years since the day that she couldn’t find her ballet slippers. It’s been four years since I yelled because I didn’t understand. Because I didn’t know. Four YEARS.

Will she look at me in four more years and say, “Mama, were those girls making fun of me? Do you think they’re sorry?”

I think of the dinner with my friend John last year when he told me that he felt like Charlie in Flowers for Algernon. I want to scream.

The Inclusion Committee gets back to work next week. Our first order of business for the New Year is planning a panel discussion on how to talk to our children about respecting differences.

Please don’t tell me it’s pointless. Please don’t tell me it’s a drop of water in the ocean. I get it. I do. I’m not naïve.

People will always prey on the weak; it’s human nature. But so too is it in our nature to protect our young. And this Mama has to DO something. I may very well explode if I don’t.

I love this little girl with a ferocity and a tenderness that can only coexist inside a mother’s heart. At moments like this the contradiction leaves me spinning inward, folding in on myself. If I’m not careful I can get lost in the vortex. I have to DO something.

I glanced in the mirror as I washed up before bed. The woman looking back at me looked exhausted. She had mascara streaked down her cheeks and dark circles under her eyes. She looked like she’d been through the wringer. I’ve seen women who have looked like that. I have felt sorry for them.

I tried to give her a reassuring look, but it fell flat.

“It’s OK,” I thought.”Sometimes it’s just too much.”

I crawled into bed, buried myself in the covers and went to sleep before doing anything on the list of things I needed to do before bed.

Yes, sometimes – just sometimes – it’s just too much.

i’m tyler

 

Hey there, gorgeous. It’s good to see you.

Come on in. Get comfortable. This will take a few minutes. Eleven actually. Eleven minutes. So relax, won’t you? Go grab your coffee. On second though, don’t bother. You won’t need it.

I’d like to ask you to watch a video. All eleven minutes of it.

The video features a delightful young man named Tyler. And Tyler has something to say.

It may take him a little extra time to get the words out. Please be patient. Let him slow you down a bit. It’s worth it. I promise. But don’t take my word for it. Let Tyler tell you himself.

Click here to view the video.

thank you to my friend Carrie B for this incredible gift!

ramps, research and facebook status

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MY wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure, but ACCEPTANCE……..93% of people won’t copy and paste this, WILL YOU be one of the 7% that does and make this your status for at least an hour! They do not want to be “fixed” they want to participate in the world to the best of THEIR ability!

~ The status on a number of my friends’ Facebook profiles this week

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Tap

Tap

Tap

Excuse me, folks?

Is this thing on?

I … um … may I have … um … excuse me – you in the back, may I have your attention for just a second please?

Folks, I really, really appreciate what you’re trying to do. Really, I do. I don’t doubt that your intentions are pure and that down to the very soles of your feet you mean well by cutting and pasting this into your status. And I really, really don’t want to be that oversensitive shrew who shows up and makes everybody feel like crap about trying to do some good in the world. I swear, I don’t. But I have to be honest, this stuff scares me. As innocuous as it may seem, I think it’s irresponsible at best and downright dangerous at worst.

With all due respect, how on God’s green earth do you know what ‘children with disabilities” want? Have you asked them? ALL of them?

Disabilities are a broad category, folks. When we say disability, what are we throwing in there? Dyslexia? Non verbal learning disorder? Blindness? Deafness? Autism? Cerebral Palsy? Friedreich’s Ataxia? Epilepsy? Mitochondrial Disease? Cystic Fibrosis? SMA?

I know an adult or a child with every one of them, and well – many of them have made it pretty clear that they’d love to be ‘fixed.’ Getting out of a wheelchair? Living past their life expectancy of 26? Swallowing their own saliva without suction? Um, yeah, a cure would be just fine, thanks.

Now I’m not claiming that everyone wants a cure. I can’t speak for everyone which is precisely what I’m hoping we can all take away from this little exercise. The community that I know best – the autism community – is fiercely and in many cases bitterly divided by this concept.

To dramatically over-simplify the debate for those of you in the cheap seats – some fight for a cure for the often crippling challenges of autism while others believe that it is an integral part of who they (or their children) are and that the ‘real fight’ should be to win understanding and acceptance from the community at large. I know someone will get upset with my broad strokes on this, but if I delve much deeper this will no longer be a post; it will be a book, so please save the hate mail.

I have come to rest smack in the middle ground. Over time I have come to a place where I believe that autism is indeed an integral part of who my daughter is. I can no longer wrap my brain around the idea of surgically extracting it from her being without taking away some of the very essence of who she is. At the same time I work constantly to mitigate her challenges and as you well know, it kills me to see her struggle. If given the option of ‘curing’ her now, I have no idea what I would do. None.

But there are plenty of people in the community who know exactly what they would do. They would grab a cure with both hands and never look back. Most are parents who work day and night to find a cure for their children – many of whom struggle with the most basic of human functions. Many don’t speak. Many have no form of communication at all. Many are in constant peril as they wander off or bolt into traffic with no awareness of danger. Many are heartbreakingly vulnerable. How could I possibly make a judgement for them? How could I tell them what they want or don’t want? How could I possibly tell them what they should or should not fight for? And so, while I may not choose a cure for my child, I will stand by my brothers and sisters in the fight for their right to choose one for theirs. Our children deserve the choice.

In many cases, passion has given way to anger and anger to blindness. I’ve seen people say horrible things to one another in the heat of the moment. It’s easy to get swept up in the madness, but I’ll say it until I’m blue in the face – we can’t ask the world to exercise compassion to our kids if we can’t even manage to show it to those within our own community.

Oops, I’ve apparently gone off on a tangent here. Apologies. I’m back now. Shaking it off – back to the Facebook status problem.

When we start to spread the word that ‘children with disabilities are not looking for a cure’ we begin to make it OK to stop looking for one. Why the hell would we spend vast sums on research into answers that according to the status – nobody wants? If the kids with the disabilities don’t want a cure, why would anyone help to fund the studies that are searching for it? It’s a dangerous, dangerous road.

Acceptance – YES. Absolutely, positively. Acceptance is vital. I will never stop fighting for awareness, acceptance, understanding and compassion. My child needs them to survive in a world that is so often hostile to her very being. And whether or not she chooses someday to take a cure, others will certainly make the choice not to.

But working toward acceptance and cure do not have to be mutually exclusive. While we work to get a child out of a wheelchair, we must also work to make the world accessible to him while he’s in it. Ramps and research are equally necessary. Hell, some of the most important research might well be done by those who need a ramp to get into the lab.

So please, stop and think before you post a sweeping generalization. These are thorny, complicated, emotionally charged issues that just don’t lend themselves well to one size fits all pass it on to everyone you know status updates.

But thank you for doing it anyway. Thank you, because I know that you meant well and I love you for it.

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