>Seeing the world through blue colored glasses

>I went to the opthalmologist for my biannual check-up on Tuesday. I asked about glasses that filter out the fluorescent lights, since they cause me so much grief, and he recommended lenses with a blue tint. I asked, “How blue?” and he said, “Just a little.” So, I went for it.

You call this “a litte” blue? A little? They are practically neon.

I’m afraid to stand out like a sore thumb. But we bought them, and, well, I think I’m stuck with them. I’m considering wearing my old glasses most of the time (in which I see about 20/75… and yes, I drive in those) and just putting these on when I really need them. I feel bad because we picked out the frames and Mom paid the extra and everything, and I thought they would be good.

I know what you’re thinking. It’s the same thing my mom would say if I told her how I feel. “Who cares what other people think? You have to be comfortable.”

I’m sorry to say that I, for one, care very much. I like to fit in. I don’t fit in enough because of who I am… the last thing I need is neon blue glasses to make me stand out even more.

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>American Public Media article

>Check it out here.

It’s perfect! Andrew did a fantastic job and I am so thankful that he took the time to hear us!

>Do you hear me?

>So, staff and I were doing our usual Monday afternoon at the shelter… and can I digress for a minute? I pet the nicestdog. She was a medium-sized black lab (mix?), 7 years old, named Cassie. She stood in my lap and put her head on my shoulder and just sat like that. She didn’t smell bad, she didn’t shed, and she didn’t bark or even whine. I hugged her and kissed her and pet her and could have stayed there forever. Mom and I will meet a potential trainer on Saturday morning, and I want to ask him if he has dogs like Cassie…

Anyway. We were getting ready to leave the shelter, and my cell phone rang with a weird number. That happens about once a week, and it always says some pre-recorded message about “my credit card,” which doesn’t even exist. I almost, almost didn’t answer. And then I did.

“Hi, Lydia, this is Andrew H. from American Public Media in St. Paul? I read your responses to our questions online about autism and employment and I wanted to talk to you some more… do you have some time?”

Somewhere in there my phone died and I relocated staff and I to outside where there is service, and he called back. We talked about talents and weaknesses and barriers to employment and past jobs and bosses and all that jazz. When asked about weaknesses, I said something about communication, and he said, “But you sound so very articulate.”

I laughed and asked staff to remind me what it was I’d tried to ask my mom earlier when she cut me off and said, “Lydia… I have no idea what you’re saying.” So, I told him about that.

Then, conversation with Andrew over (I’ll send you the link to the story he does whenever it’s finished, k?) I got home and tried to relay the story about the interview to my sister. It was kind of funny, because once again, she was confused and I couldn’t straighten it out.

See, the thing is that I make perfect sense to myself when I explain things. I guess I lack the theory of mind to figure out what exactly the listener does and doesn’t know without me saying it. As I try to think that through now, I’m boggled by it.

I guess my autism could be described by awesome gifts coupled with surprising deficits. A lot of theory of mind-type things I can understand in theory (i.e., you and I can have opposite thoughts about the same subject), but in practice, I don’t do so well with it.

Andrew did ask me to describe “where I am” on the spectrum… and I said well, kind of everywhere… I like to say usually-high-functioning-autism.

Here; that’s where I am. I’m here.

>Things I’m known for

>Let me first point this out, lest you overlook it: the following requires a great amount of theory of mind to write 🙂

If you asked other people in “real life” what they think of when they think of me, they might say cats, and… oh, I’m getting stuck already!… Diet Mountain Dew, and purple, and Disney, and Elsie, and candid honesty, and autism… okay, I think that’s enough to make my point. This is racking my brain!

My point is, though, that people will probably never say anything like “assertive.” Or “stands up for herself.” Yeah, not much of that goes on here.

I’ve been called the r-word and I know people who have intellectual disabilities, and the few times I’ve heard the r-word said in public, I couldn’t get my words together fast enough to defend them, me, us, anyone. I’m pretty ashamed to admit that, but it’s the truth. And if I can’t stand up for others, imagine trying to stand up for myself. It’s even worse.

But I’ve decided something. I’ve figured out the words, so that won’t be an issue, and this is what I’m going to say…

The next time someone either asks, “But don’t you want to/think you should lose weight?” (and we’re talking not doctors here. My, uh… former… BSS is the most recent example.), I’m going to say: “Actually, I’m beautiful and perfect just the way I am. My nutritionist and doctors say that I’m healthy. If people disagree, I guess it’s going to be their problem, because I’m happy. But thanks for your concern.”

Enough said.

>In the meantime, check this out

>Well, I don’t know what to say. That little “write, write, WRITE!” voice is sounding in my head, but I just don’t know what to say, so I can’t write.

But in the meantime, check out this site (fixed the link, I think) about 50 blogs you should bookmark during Autism Awareness Month. Scroll down, oh, halfway?

And here come the words, now. You see, my goal is to be heard and to make a difference. It almost sounds silly, doesn’t it? An autistic girl who doesn’t work, can hardly volunteer, and can’t leave the house without help… wants to make a difference? Why, yes, I do.

I want to have a voice, if only behind my computer. When I was in partial, we did a thing on self esteem, and we read a piece that said things like, “I have a body, but I am not my body. I have a mind, but I am not my mind. I have thoughts, but I am not my thoughts.” I left wondering… well then what am I? But I just found the answer to that question. I am my words. My words are me.

>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!