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”.

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.”

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!

~Julie

Eye Contact. Or not. (That Perspective Thing, Again.)

After spending countless months transitioning from mom to entrepreneur, I finally decided to take a friend up on her suggestion to read a certain book series. Not for greater intellectual development, nor another, “how-to do this, that, and everything else,” read, but reading just for fun. And I’m so glad I did. What started out as picking up one book to read over winter break turned into hunting down an entire series.

The No. 1 Ladies’ Detective Agency series by Alexander McCall Smith have been such pleasant, quick and easy reads. And as someone keenly interested in the concept of “perspective”, the cultural differences from my own, stressed throughout the book, have given me much to think about. Namely, eye contact.

As an AsperMom, I’m all too familiar with the emphasis my present culture places on that thing called “eye contact”. We’ve had school and family complain how our daughter lacks it, and how that is a…problem. It’s also part of Asperger’s and quite frankly, in my not so humble opinion, there are bigger goals for her to reach than looking someone in the eye. Like grades. Or getting along with others. When to keep her thoughts inside, and when to express them. To learn how to live on her own.

But I digress.

I’m good at that.

Alexander McCall Smith’s series is set in Botswana, and he reflects on certain cultural expectations of the main character, Mma Ramotswe. One, in particular, had me. He writes of children and how they approach adults – with their eyes downward. Eye contact from a child to an adult is considered a sign of disrespect.

I mentioned it to Kristina, and she smiled. She abhors eye contact. It bothers her to no end. The thought that another culture discourages children from using it when greeting an adult made her feel…relieved.

To be honest, I am no expert on how eye contact is seen from culture to culture. But the thought that eye contact is not a universal social rule was…eye opening. (Bad puns, I know. They happen.)

Why is it that we spend so much time and energy teaching our kids to conform to social norms that, in the grand scheme of things, vary with the wind? How confusing is it to repeatedly practice “look me in the eye!” – only to visit another culture, and tell our aspie to disregard that “rule” for a moment?

Gosh, I’d love to devote time and energy to understanding all this. To further understanding of all of this. Of cultures. Of social rules. Of Asperger’s trying to make heads or tails of it all.

What do you think? Doesn’t it often seem that we make things more complicated and complex than they need to be? How often do we (unknowingly, even) "force" our culture on another, instead of making a conscious choice to understand it, instead? At the end of the day, what is it that really, truly matters as we interact with one another? And how confusing it all must be to our kids.

There's a Coffee Klatch Tweetchat on Monday. Interested? Join us!

On Monday, I'm honored to be the featured guest at The Coffee Klatch, doing my first Tweetchat. I would love it if you would stop by, say "hi", and join the conversation! Sure, we'll talk a little about the book, but I'd love for you to share your thoughts, as well. Let's make it a fun time!

Join me, Monday, February 21, from 9-10am EST. Click here for the link! Chat with Julie.

Not familiar with the Coffee Klatch? They are an incredible interactive source for families of special need kids, found on blog talk radio and twitter.

Hope to see you there on Monday!

Valentine’s Day Wish Lists

This past Holiday Season we tried, again, to convince our daughter that a wish list is not a checklist. Of course, she disagreed. And then followed up with a dissertation on the matter.

Our girl is an Aspergirl and quite frankly doesn’t see the point in giving anything to anyone that they do not want, nor anything not asked for (whether they’d want it or not). (She’s never been a fan of surprises.) She simply sees it as a waste of time and hard earned money. It’s hard for us to effectively convey the meaning behind much giving, but we keep trying. In the short term, though, it appears nothing more than fighting another losing battle of wit and words.

Then February hit, and my poor husband got the look that so many men get right around the middle of this month. You know the look. It’s the, “What does she want for Valentine’s Day?” look. The, “I had better get this right or else…” look. That Heart’s Day panic that women effortlessly wield over men like nothing else.

Truth be told in my earlier years, I had strong opinions on the matter. Flowers? You had to ask? Pink, please. Chocolate? I’ll take the larger box with the silk or velvet cover – and the words “economy size” better not be on the lid. And dinner? If I make it, there will be candles. If I don’t? Well, there will still be candles.

Now, I’m older, and my perspective has changed. I am much more into the meaning behind the day than the gifts and getting that overwhelm it. But don’t get me wrong, I do know what I like, but I also have zero interest in asking for – or even demanding – it.

Now.

I have to confess, though, that when the Holidays come ‘round this December, I’ll be a little more sensitive to the “wish” vs. “check” list discussion with my daughter, seeing as I’ve abided by that “unspoken law of womankind” for many years, myself.

But if he is reading, and does need a tiny suggestion, I suppose one hint wouldn’t hurt…

Chocolates.

Lots and lots of chocolates.

That Vegan Thing, Again (aka, Don't Let Me Cook)

There it sat, in the pantry. A lone red can of tomatoes with green chiles expiring in a mere month or so, staring at me, guilting me into using it rather than letting it collect even more dust.

I should have let it sit there.

I mean, the idea sounded good. Throw in some TVP, frozen peppers, and some seasonings, serve with a few pieces of fried corn tortillas, and dinner for one is done!

TVP? Oh, it’s textured vegetable protein (soy). It’s actually pretty decent in spaghetti sauce. Trust me.

Just don’t ask my husband, who is quite thankful he had to work through last night’s dinner. Or my daughter, who was lucky enough to snag Monday’s leftovers.

Overall, the transition to veganism has been positive. I feel better, and my family has been putting up with it. Even the dog comes running whenever I’m sautéing tofu!

No, I’m not kidding. Too many years of breeding “for show” have this little guy confused, making him more excited about tofu in the pan than bacon in the freezer.

But last night’s dinner…was a disaster. Thankfully, some kitchen god created the garbage disposal, which worked - and didn’t spew it all back out at me.

I wouldn’t have blamed it if it had.

So, I did what most sane, budget-oriented people would do. I opened up the freezer door and stared. Then I closed it, and repeated the process with the pantry. And don’t even mention the package of cheese taunting me in the refrigerator, knowing that caving now means regret later. I debated giving up on the notion called dinner but the freezer came calling again, this time remembering Boca Burgers were there along with a frozen hotdog bun, both ready to save the day…er…dinner.

Someday, I will conquer this vegan thing. Someday, I will sauté and steam with the best of them. But until then, heaven help the family. And please, oh pretty pretty please, pass the recipes. And the cooking lessons.

Even the dog knows I need them.