Dignity

Cure ignorance, not autism. I thought it should go without saying, but apparently I was wrong, so I will say it now: People with autism (adults and children) deserve to be tread with the same level of dignity as everyone else. That's not to say that people without autism are consistently treated with dignity, either, but that's another issue that I can't begin to touch here.

So, how do you treat a person with autism?

Respect our differences! Please, quit trying to strip us of every little thing that makes us autistic. Who cares if I stim when I'm alone in my apartment? Heck, who cares if I do it sometimes in public? It's part of who I am; leave it alone. Maybe, instead of getting rid of the stimming, you can look at why I'm stimming and try to change whatever is making me uncomfortable.

Do NOT talk down to us. In my research study, all of the researchers talk to us like we're children. Now, I'll give you that in many ways, I am a child... but they speak to us in a way that I don't even talk to my friend's 2-year-old. I am a highly intelligent human being... I would venture to say that most of us in the study are more intelligent than the researchers themselves... please, treat me like the intelligent person that I am.

Involve us in decisions about us. Whether it's a behavior plan or a living situation or a huge, nationwide organization that seeks a cure for autism, we deserve to be involved in these decisions.

Respect our limitations. It's immensely frustrating to be told that I'm making it up or to get over it when I can't do something.

Back to the cure issue... first of all, don't assume that it's either good or bad. Some people want a cure and some do not. However, the way to go about finding a cure is certainly not to research prenatal testing. Why? Well, if a parent finds out that her baby-t0-be will have autism... how many will abort? Right. Not the way to do it. This world needs people with autism.

Why today was good

Why today was good:

I went from having no one to train my service dog to having OPTIONS! And all right near home!

I went from having nowhere to get my puppy to finding an awesome German Shepherd breeder just 2 1/2 hours away who even provided references for people who have service dogs from her!

I realized (after what, 8 or 9 months of it happening) why Elsie wakes me up at random times for seemingly no reason. Ready for this? I think she knows when my blood sugar is out of whack. Seriously. It clicked when she woke me up last night and I was 332... then I realized that when she wakes me up, I usually realize I'm high or low. How cool is my cat?!

I watched this video. Go watch it. I mean it. Be prepared for tears... I almost cried, and I NEVER cry at things like this.

Mini Addy came. You see, at 23 years old (plus the fact that I'm super sensitive to how people perceive me), I can't carry my big dolls around with me. So, I wanted one of the 6.5" dolls. Not able to afford the $22 plus $5 shipping, I posted on my message board (for adult collectors of American Girl dolls) and asked if anyone could send me a mini, any mini (though I dreamed of Addy) for $20 shipped. When no one responded after a while, I found mini Nellie online for $18 shipped and settled. But then, someone got back to me and offered me her Addy for just $5. Well, of course I couldn't say no because how often does something like that happen? So Addy came, and she's perfect and adorable and I love her. We hung out all day :)

I got a sock-cat kit. She's a sock monkey, only she's a cat! Mom said I could get something to sew at the fabric store, but rather than more doll clothes right now, I felt like this cat. And we had a coupon, so I got her for $6!

Mom said the government didn't shut down, which is exciting, because a lot of people's livelihood comes from government money. Namely, our soldiers deserve to be paid! I don't get much into politics because it upsets me, but honestly, it doesn't take a genius to figure out that our soldiers deserve to be paid. These men and women are fighting on the front lines risking their lives... and simultaneously worrying that they could lose their homes or that their families could go hungry or their autistic children will lose services? No. Just, no. I almost HOPE my SSI gets postponed, because I would feel bad getting awarded my SSI money when soldiers' families are doing without.

I spent the whole day out with Mom (like, 6 places or something like that, including church) and I'm not done! I feel okay!

I think Michelle (www.fullsoulahead.com) calls this a rampage of apprecation... I think I've got that right. Well, anyway, that's mine for today!

Done.

I know I say this a lot, but I'm so done.

To update you on the email to the woman in charge of the conference, basically, she felt badly and had no idea how it came across. She said of course I can bring someone with me at no charge (though I'd told her that at this point, I don't think anyone can come). In light of that, she offered a volunteer to sit with me for the day. Other years, that might have been okay, but not this year. Not now. I'm too... something... to be able to sit with a stranger for that long. Or any bit of time.

In other news my frustration tolerance is nil. In the time I've been writing this, my computer has deleted everything I've written twice, made my font bold twice, brought up a new page, and I forget what else. I can't do anything on here, on my lovely new computer, without things going nuts. There is no virus; it has done this since day 1 and gotten increasingly worse. I scream, and pound on my desk, and bite, and everything else, because I can't handle it.

Also, did you know that the ONE place that will train a service dog for an adult with autism is 800 miles away and wants $15,000? Yeah, I don't have that. There are plenty of places that will do it at no cost to you, only they only train for children. There are places that say online that they do autism, and when you call, they don't. At this point, I'm planning to apply for a social support dog. He/she wouldn't be able to go out with me, which is kind of half the purpose of the dog, but would be able to be a well-trained dog at home with me.

My BSS is due to come at noon. She's loud. And she asks me very personal questions that I'm not comfortable answering, especially when I've only met her once. I guess it's her job, but she seems to have no sense that they make me uncomfortable. She wants to come to activities with Laura and I, but honestly... I make a HUGE effort to blend in as well as I can. Huge. Having a CI with me (granted, one who works really hard to blend in too) makes me stand out more. Having a CI and a BSS who stands there with a clipboard? No thank you. I'm not comfortable. It's going to be an interesting meeting with her when I'm currently unable to speak.

Anyway, sorry for the meandering and disorganized nature of this post, but that's me right now.

Have soapbox, will... hide behind computer and write?

Okay, blogger; this is war. Or, really, I'm just getting rather annoyed at your spacing, or lack thereof. Have you ever tried to read one of your own posts, blogger? Because, really, they kind of stink.

I am blessed to live in a city that is on the cutting edge of autism research in a state that provides awesome services for adults (no housing help, but that aside, I have it good). I mean, there are definitely still issues on all fronts, but people in my area are really trying, and I appreciate that. We're on our way, if nothing else.

So, next week in my city there is a big (in terms of big deal, not sure how large of a turnout there will be) conference about "Autism Through the Lifespan." There will be speakers and workshops and the like. And the coolest part? They so want people on the spectrum to attend that we are admitted free of charge!

Great! Right? Well... Yes, I may be free of charge... but my autism is such that I require either my mom or my CI to be with me if I am to sit through and thus getting anything from this conference. I mean, I can't even get through my hour and a half long bible study without a break or two. So, in order for me to bring Laura, it would be a $95 admission. I can't ask Laura to pay that. Her company has no allowance for working with me. I certainly can't afford that, and even if I could, it's against company policy for me to pay for her.

So, you see, I really can't go to the conference.

The message they are sending is that they want people on the spectrum to attend... but only the most independent among us. How is that supposed to make me feel?

I said I wouldn't write the person in charge an email. For over a week I held out. And then I fussed in my group today (at the study I'm in that I complain about all the time), and someone said, "But you know, there may be others in your position too." And that did me in. I came home and wrote to the president of the organization that hosts the conference.

Because really, how far is it? It's not. I matter too. We all do.... not just those of us that give autism a good name, but all of us, on all kinds of days, at all levels of independence. And an organization specifically for people on the spectrum should be the first in line to promote that idea. I'll update you on if and how she replies...

Editor's note: Thanks to Adelaide (see comments) I think I found my way around whatever setting got screwy! THANK YOU!

One more April 2nd post for you

I consider April 2nd something akin to my birthday. It's "my day." It's a day of celebration, in a way, that I am who I am, that everyone on the spectrum is who they are, and that that's okay. It's a day of awareness, which means moving toward acceptance. It's a good day. It wasn't enough to wear blue, though. I mean, I could be wearing blue because I grabbed blue first thing in the morning, you know? So I got a blue t-shirt and wrote on the back, "Ask me why I'm wearing BLUE." And don't you know, they asked. In the bathroom at the Original Pancake House, I was washing my hands (For the third time tha thour. Fun fact: My mom jokes that we know where every bathroom is this city is, because I. go. constantly. Hey, I drink a lot, okay?), and the woman behind me said, "Okay, so why are you wearing blue?" and the woman beside her said, "Yeah, why?" Disclaimer: I never said I could speak. Writing is my thing. "I'm wearing blue because today is World Autism Awareness Day." And I forget what they said, because they both chattered at once, but now two more people knew. And at my favorite store (Joann Fabrics), a woman behind me in line at the cutting counter asked. And I told. And she said that it was cool. Okay, so I didn't give a speech that a thousand people heard. I didn't change anyone's life. But you know, that's three more people that heard something about autism that otherwise may not have. If you ask me, that's called success.

Show me your blue!

Sister (last March) with some blue balloons

Leigh's aunt, decked in blue

Me, 18 months, with blue-green blankets

A very good friend's son, age 2 1/2, conked out in blue yesterday

Me in my blue with two of my girls in blue

Okay, I know this is semi repeat, but I couldn't resist. She looks hilarious.

A friend who has known me since before I was born changed her profile pic to blue!

Leigh with cute Quita showing off her blue.

Why I wear blue

Please, please excuse the spacing issue. I tried to insert some squigglies to improve readability, but I'm not sure it's helpful at all.~~~It's not about politics.~~~It's not about Autism Speaks.~~~It's not about awareness (just ask Jess over at Diary of a Mom). ~~~ It's not about treatments. ~~~ Or cures. ~~~ Or not-cures. ~~~ It's not about yesterday. ~~~ Or tomorrow. ~~~It's about today. What can we do today to bring people to greater acceptance of those who are, well, a little different? What can we do today so that one little boy or girl won't be called weirdo, freak, or the r-word (yes, I've been called them all and more). What can we do today to make it okay for children and adults, on the spectrum or not, to like what they truly like and do what they truly enjoy? ~~~ It's about Riley, and Brooke, and Hallie, and Ollie, and Chloe, and Kate, , and Bear, and Scrumpy and the thousands of children and adults on the message board whose names I don't all know, and yes, it's about me.~~~ But it's also about you. It's about my mom, and Leigh, and Heather, and Chloe again because she has the unique experience of having autism and knowing someone with it, and the people who work with me, and my pastor, and Sister. It's about real life friends and online friends and those (Chloe, Molly, Kate, Amanda, Michelle) who are gloriously and perfectly both, all at once.~~~It's about giving us a voice who can't always, or ever, or reliably speak for ourselves. Those of us to have no words, or use PECS, or sign, or type, or have some words, or sometimes have words but sometimes don't, or have tons and tons of words but can't use them in a way that other people can understand us. Or those of us for whom more than one of those are true.~~~It's about acceptance. It's about hope. It's about friendship, and motherhood, and fatherhood, and sisterhood, and brotherhood. It's about the fact that you believe that I am worth it. Because I am. And you are. Your child is.~~~ So this is why I wear blue, both today and tomorrow. I can't change my bulbs, but I can wear it, and my back says "Ask me why I'm wearing BLUE." So far, no one has asked, though I will say that I spent most of the day so far with my back in a chair against the wall. Half the people at partial wore blue. My therapist wore blue. My pastor will wear blue. My friends will wear blue. My mother will wear blue (because I won't let her leave the house otherwise!).~~~ Feel free to snap a photo and send it to me of your blue. I'd love to have a little mini compilation of people in blue shirts on my blog... but I can only do it if you wear blue!