Wednesday, March 30, 2011

Saturday is All About Autism

Saturday is World Autism Awareness Day, so I wanted to share a few simple notes from my personal relationship with autism.

My daughter has autism.
My daughter is awesome.
She is not sick.
She is incredibly strong.
She, and her parents, don’t “suffer from autism”, but we do “suffer” – if you will – from being perpetually misunderstood by others.
And that stresses us out.
We don’t like stress.
People tell my daughter they understand Asperger’s, but they usually don’t, as actions scream louder than words.
That makes us work even harder to hone our message about it.

Wednesday night is for pasta night, and no matter which restaurant you try to bribe my daughter to go to, it won’t work. It’s all about the pasta. It’s all about this thing called “routine”. When the restaurant rearranges the placement of the cheese, fruit and vegetables in her salad, she notices, and she points it out. She sees a movie once and has it memorized. And never, ever, ask her to wear anything with a button on it.

Autism is “high functioning” in our house, which means it is invisible to most people. Our story differs from those who will never talk, and never be able to take care of themselves, which means our perspective differs, as well. It’s important to note that autism is a spectrum. And although our stories are similar, no two are exactly the same.

So, please, don’t paint us all with one big blue brushstroke.

I could go on and on about it here, but I won’t. (Besides, if you read the book, you know a lot of our story, anyway.) Plus, time flies, my kid keeps growing up so fast that adulthood is a mere blink away, and if I, or anyone else, only see her as “a high functioning autistic”, what good have we done? What have we achieved? We need to see her beyond her label, to the gifted, unique person inside, who offers so much to this world. And she does have quite a bit to offer, which will only make this a better place for us all.

Sure, she has autism.

And I have asthma.
And some people have heart disease.
And others have trouble moving arms and legs, due to MS.

But there is more to us all than any one given aspect. I’d hate to have people only approach me in light of my asthma.

Unfortunately, we aren’t all aware. We don’t all have knowledge of autism spectrum disorders, and some of us will never bother to achieve it. In fact, some will loudly demand cures for those on the high functioning end of the spectrum, when a cure really doesn’t seem necessary. If anything, my daughter, and those like her, teach me more than I ever could imagine about life, the world, and myself, even, and that is a GOOD thing.

And that is all due to this thing called “autism”.

At my first book singing, a reader asked me if I thought I had Asperger’s (her daughter has it, and the conference had her wondering the same about herself.) Honestly, I don’t have the answer for that. But I can definitely relate to my daughter, and even Temple Grandin, at times. I do think in pictures. If I do have it, would I want people constantly campaigning to “fix” me? I know all that talk makes my daughter feel poorly about herself at times.

So this weekend, when you take a few moments to think about autism, remember that we are all different, and although a cure is very welcome for some and even necessary, for others of us, all we want is understanding and acceptance. And maybe, even, your friendship.

Don't you want the same?

Wednesday, March 23, 2011

My Heart Aches for Japan

My heart aches for Japan. I can’t think of another way of putting it.

I can’t even imagine what it must be like. As a mom, I think of the children who lost everything. Their homes. Their pets. Their toys. Even people, whose faces they now remember. Then I think of those to whom change is never an easy thing. And now their world is turned upside down, with each day’s promise of improvement anything but set in stone.

As an artist, all this emotion welled up into a work, which I just can’t seem to finish. And maybe there’s a reason for that. My knowledge of the heart wrenching disaster is based on what I read and images I see in my own country, way on the other side of the Pacific. Towns leveled. Water damage that reminds me of our Katrina, which blooms and grows, even though the tides have receded. And now radioactive everything in certain parts, whose story is still unfolding. In other words, the situation in Japan is far from over.

Our Hearts Go Out
As much as we hear the news, one thing I’m not really hearing about are different ways we can all help. Our country has shown fundraisers on television hosted by celebrities, and politicians have made strong cases for citizens to do what they can for other disasters at home and abroad, but I’m not hearing much about how we can help for this one. And that bothers me. But, again, it could be my crazy busy life and I’m just missing it.

Sure, we can all “write a check,” but not everyone is in a position to do that. And even if some of us are, we may not want to give money but something more tangible, instead.

If you know me, I truly hesitate to endorse much of anything like this. And, let’s face it, our taste for giving money to charities is souring, as it sometimes appears that much of what we give seems to go to the organization first, others second, especially whenever it's reported that a CEO of a high profile non-profit rakes in more than we’ll ever see. In other words, we want to help where and how we know it will make a difference.

A tweet from Fons and Porter energized me to type something up about this, and provided me with an idea to share. Apparently, Quilters Newsletter magazine is also “friends” with Patchwork Tsushin, a Japanese quilting magazine. Patchwork Tsushin is collecting quilts for Japan, and those living outside can participate as well. (Click on the link for more information.)

Another place to help, recommended to me by my good friend, and one of the bloggers at “We Know Stuff”, involves donating shoes – new or used – through Soles for Souls.

These are only two ways we can do something besides wishing there was something we could do. And I'm sure there are more, which I hope others will find and share.

And, sure, donating money does help, as there are needs that a container or two from our country will not be able to meet. But I’ll leave that up to you to find and decide the best way to do that.

Come to think about it, I may never “finish” that Art Quilt, after all. It is acting as a reminder that once the news moves on to the next story, Japan will still be rebuilding towns, homes and lives. And is it such a bad thing to have a visual reminder not to forget? To remember? That we are all bound together, and to remember to take care of one another, even after the evening news fades to black?

Wishing much peace, help, hope and healing for us all.

Wednesday, March 16, 2011

Do You Know Autism, Or Do You Know Autism?

A long, long time ago, I studied French. I took it for many years, ending up with a Minor Studies degree in it.

Do I remember any? Un peu.

And that’s about it.

Well, not really. I can read it pretty well, but speaking it has become increasingly difficult. Over the years, I’ve discovered several words that just do not translate well into English. Words I wish we had in my native language, and which I translate (to French) in my own mind from time to time. Two of those words = one word in English. The English? “To know.” The French? “Connaître. Savoir.”

We use the phrases, “I know,” and “Do you know?” daily. But without context, those phrases cause confusion. For example, consider the phrase, “I know what you are going through.” That is typically followed by, “Thank you,” or even, “Do you?” There is knowledge of an intellectual sort as in, “You told me why you are having a bad day, so I now know it.” Then there is familiarity as in, “I know, because the same thing happened to me, and I understand.”

This is where the French comes in, and why I prefer it. The French use either savoir (for the former) or connaître (for the latter), and there is no doubt as to the meaning.

Many of us in the autism community feel the same way. Do you know (savoir) autism, or do you know (connaître) it? We tire of people claiming they “know” autism. That they “read about the struggles autistics face”. That so-and-so on TV has Asperger’s. But when push comes to shove, we are often left questioning, “…but do they really know it? They sure don’t seem to.”

Last night, my daughter opened up about gym class. She’s mainstreamed, and although she prefers for her peers not to know about her Asperger’s (think instamatic teasing, etc., despite the fact she is incredibly proud of being the “star” of a book about it), she does at times see herself as one of the “special kids” as the teens call it. She said that the “special kids – you know what I mean, Mom,” came to the gym to participate with her class. She said everyone was nice, but her peers seemed too soft with them. They weren’t giving them chances to fully participate. She thought they were being babied, as if they can’t “handle” whatever the game was at the time – and were never given a chance to fully try. And it made her frustrated. “How would you feel if you were one of them?” she questioned. “Wouldn’t you be upset? What if you wanted to be given a chance to play like the other kids? Sure, you might fall more, or drop the ball more, but wouldn’t you wanted to be treated just like everyone else? I mean…”

I bring this up as “we”, as a whole, need to go much, much farther than having a textbook knowledge of what autism spectrum disorders are. Why not try to mentally put ourselves in their shoes? We must not assume that everyone with autism is exactly like everyone else with autism. We are all individuals - autism or not. We must listen to the families who live under the same roof with it. We must look into the heart, the spirits of those who have it, and try our best to understand them, or if nothing else, see them as people with souls, just like us. For those of you unfamiliar, think how you would feel if someone treated you the same way you treat or talk about someone with autism.

There is someone “in there”. And they can hear you. And they have feelings. Please know that. (We are endlessly thankful for those of you who do.)

Nous devons le connaître .

We must “know it”.

Thursday, March 10, 2011

Tears at the Dentist

Really, now. Who doesn’t love a trip to the dentist? Reclining in an oddly shaped chair, under a spotlight, under stress, with all sorts of pointy, shiny tools ready to do all kinds of things to us. As a kid, I remember being scared to death, but I always knew there would be a bowl of brightly colored lollipops to choose from at the end.

I guess that’s what you’d call ensuring repeat business.

But let’s face it. As a kid, I was pretty much scared of any and everything. (Pathetic, huh?)

Truth be told, until recently, our daughter has had positive experiences with the dentist. Then came the move, and, of course, changing every single professional in her life. Like most things, finding the right fits for her took time – and some switching around. This included the dentist.
Abstract Painting - Can you see the toothbrush?

No, I’m not going to get into why, who or how we switched. Besides, what doesn’t fit us, suits another perfectly, right? (And with a stack of supposedly waterproof cork awaiting me in the studio, that now has to be made waterproof, I’ll save the “what worked, what didn’t” for another time. That sheet I bought at the craft store has a proven penchant for soaking whatever’s underneath it. Ugh.)

But feel free to ask me. I’ve got plenty of words in my pocket and I’m not afraid to use them.

Recently, Kristina had her first visit with the new dentist, and we were both impressed – and relieved. After all, when you have Sensory Processing Disorder (SPD) in the family, trying new places doesn’t come easily. Throughout the cleaning, someone came and updated me on how she was doing. At one point, she mentioned to me that she had been tearing up during part of the procedure. But when they asked her if it hurt, she said it did bother her, but seemed to indicate that is was more than that. Then the hygienist asked if it was the sound the tools were making, and she said it was.

They voluntarily - and proactively - switched tools. Really. And my daughter was able to relax and complete the process much less stressed. And let’s face it, when she’s calmer, those working with her are able to be more productive, too.

And she didn’t “feel like a problem” to them. She felt respected and understood.

Later that evening, my daughter remarked that she found it amazing that instead of telling her to, quote, “Suck it up and deal with it, like they would have told me at other dentist”, they were sensitive to her sensitivities – and chose another option. The end result was the same: clean, healthy teeth.

Or was it?

Had she been with the previous dentist, the tears would have continued. Not due to discomfort, or the noise that no longer would be bothering her. But due to the fact that another group of people charged with her care did not take her sensory concerns seriously. Knowing that there ARE people who choose to and do know what it’s like to have sensory struggles, I can’t help but wonder if she ever has the desire to face those who’ve made her life more difficult by making clear to them who she is, then telling them…

“Deal with it.”

Wednesday, March 2, 2011

My Blog, Your Voice, Your Choice

Anyone who knows anything about me knows that I have an affinity for words. And I use them. Lots of them, all crammed together, spoken or in print. And many of you are kind enough to listen to them, to read them.

As I write in Asperger's in Pink, life consists of more than school, meetings and doctor visits. And this blog tends to reflect that, focusing on anything from Asperger's, to my studio, to that vegan-ish journey I've somehow landed on. In other words, my blog will never focus on just one topic. But sometimes an assortment of topics looks more like a jumbled closet than a tempting box of fine chocolates. (And everyone who knows me knows I'll take chocolates any and everyday!)

With that thought in mind, I'd love to know what you want to see here. What you would like to read more (or less) of. Which "chocolates" you'd like to see in this "box". More on Asperger's? Lighter on others? Add a new topic, such as a featured guest here and there?

To make it easy, I've positioned a poll up top ^  to the right --->. Can you see it? A few have told me it's been hard to find. But it's there. I'd love it if you would take a moment and do the talking. Let me know what you'd like to read, and I'll do my best to make it happen.

And if you've already voted? Thanks so much!

And thanks for stopping by. All this talking about chocolates is making me crave some. Drat.

Have a great week!