Introducing...Kristina

Those of you familiar with my artsy side have no doubt heard me mention my passion for Autism Awareness. In fact, a section of my ArtFire studio is dedicated to original pieces that either work to further Autism Awareness (specifically Asperger's Syndrome) or stem from that passion.

And those of you familiar with me from the autism community probably already recognize the name in the title of this week's post: Kristina.

Kristina has Asperger's Syndrome, an Autism Spectrum Disorder. She is also my incredibly strong daughter, and is often referred to as "the star" of my book, "Asperger's in Pink". When writing it, I, in essence, did the talking for her. But now she's a little bit older and it's time she speaks in her own words.

Kristina is blogging under Asperger's in Pink, right here on blogger. After all, it's her story, right?
Kristina is tweeting, too: http://twitter.com/Kristina_AIP

She's just starting out, and neither of us are sure how frequently she'll post or tweet, but when she does, you can rest assured that those words are 100% hers, and hers alone. She would love it if you would follow her on this portion of the journey. Meanwhile, if you have any questions, or concerns, even, feel free to direct them to me. I will continue to run this blog as I have been, posting about anything from art to autism, because, as I write in the book, life consists of more than just a few segments. That isn't changing.

As for Kristina? I'm looking forward to reading what she writes. And I am so proud of her that she is choosing to continue to share her voice with the world.

Welcome, Kristina! Welcome.

My Husband Will be a Featured Writer Here Shortly

Somehow, I've talked my husband into writing a blog post. Actually, it was surprisingly easy. I thought I'd have to pry him with all sorts of things, much of which would include me listening to all sorts of sports somethings, which typically go in one of my ears and out the other.

But all I did is ask - and he said yes.

(Hmm...what else can I ask him to do?...)

I'm not sure what he'll write, and I'm not sure if he does yet, either, but if you have any suggestions, I'll gladly pass them along to him for his consideration. My guess is it will be on Asperger's - but depending on what I put on the menu this week, it could be about my vegan-ish journey, and his take on that. And trust me, he does have an opinion on that!

~Julie

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?

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.”

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!

How I Spent Last Thursday

She drove out Wednesday night, and stayed for a few days. Early both mornings we hopped in the car, driving in the dark through all sorts of traffic, finally reaching the heart of the city and an unfamiliar building. Walking through a cold, gray parking garage without a hint of direction, we made it to the sign in table as I wondered how 1,400 people would ever fit into a ballroom.

I think my sister was simply relieved I got us there in one piece.

The conference organizer greeted us, and pointed out the table I’d be using to sign books. I wasn’t sure how to react. All sorts of emotions, from excited, to humbled, to downright nervous, ran their courses through me.

I mean, I’m just a mom.

A mom of a daughter who just happens to have Asperger’s Syndrome. A mom who wants to turn up the volume on these kids and grab a piece of the spotlight so often shining on their counterparts. A mom who desires to get the conversation going longer, deeper, and stronger of girls and Asperger’s Syndrome.

And I can’t do that alone. Rudy Simone can’t do it alone, either. Neither can other Aspergirls, as Rudy refers to them. We need other voices to join in the mix. Voices that have different experiences than ours. Even voices who sound the same. Simply put, we need more.

As my sister picked a pair of chairs for us toward the center of the grand room, and I clumsily placed my lunch bag and coffee under the chair in front of me while waiting for Carol Kranowitz to start the SuperConference, I pondered how we can help these Aspies become better understood, loved and accepted.

Over the next few days, I will be sharing my experience at the Autism Asperger's SuperConference in Charlotte, sponsored by Future Horizons. I'd be honored if you followed along, and shared your thoughts, as well.