Don’t Be Blue

I’m going to #WalkInRed and #LightItUpGold on Thursday.

Emma's Hope Book

Mom prepares me,

but nothing can inoculate fear colored blue

masked in lights, shining brightly.

The terror seeps through.

Awareness disguised as tolerance is not the same as love.

An uneasy embrace may appear affectionate,

but can feel worse than a slap.

Words said with anger are not kind,

no matter what each word means by itself.

Look kindly

choose many feelings,

but please do not choose blue.

#WalkinRed2015 #WalkinRed2015

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Why You Should Listen to What Autistic Adults Have to Say

As I have said in response to a previous post, my viewpoint was dismissed at the Autism Society of the Bluegrass meeting I went to when I revealed I was autistic. This greatly dismayed me, even though I had a viewpoint that might have been useful to the people there. They were only interested in pushing their own agenda past what someone their agenda might actually affect. My dismay is this: Would they dismiss the viewpoints of their own children, had they the words and understanding I did, the very people who their actions would affect? Why do they not listen to us?

There are reasons you need to listen to adults on the spectrum, if you want to truly understand living with autism. For one, we actually have life experience dealing with autism. We can tell you about sensory issues, echolalia, the words not forming when you need them to, etc. We can tell you that. Or do you not want to hear what might actually be going on with your children? Autism is more than a concept or plague when you talk to us. It is that thing which gives us a little curve in dealing with people and our surroundings. Autism is a way of life for us. Even if you just want to cure and stop autism, you cannot cure it right now. You have to deal with it. Why not give those of us who are actually dealing with autism a chance to tell you what it is actually like?

It reminds me of a scene in “The Sword in the Stone,” an innocent Disney movie which gives us a scene about flying:

It’s just like that. Would you rather learn about autism from people who may know an inkling about what is going on, or somebody who actually knows what is going on? It’s also like getting a tour or a city you’ve never been before. Would you rather get a tour from a book, or from a local? A local makes more sense to me.

Besides, there is a big reason you need to listen and acknowledge what adults on the autism spectrum say. You are setting your own children up for discrimination and failure. Not acknowledging what autistic adults have to say now will set a precedent for not acknowledging what your own children, as autistic adults themselves, have to say in the future. They will be discriminated against, and as you know, when people are dismissed when it’s important, they get desperate. Their communication gets more obvious, and then it gets violent. Who knows what autistic adults will do in the future if their viewpoints are dismissed and minimized in the present? We can prevent future violence by present acknowledgment. Can you not see the consequences in the future? I can see them now. We can stop them. Listen to us autistic adults. We are trying to communicate.

Walk In Red…and the Twizzler Challenge

Okay, let’s veer off course for a bit and have some fun. We’re going to talk about two causes for autism awareness and acceptance. Just so you know, acceptance trumps awareness for me, because the awareness speaks of gives an air of fear and shame around the condition of autism, which is NOTHING TO BE ASHAMED OF. Got it? Since that is out of the way, I’m going to talk about Walking In Red, AND….the Twizzler Challenge.

First, let’s do Walking In Red. Walking In Red symbolizes that you stand with the Actually Autistic, like me, in solidarity of Acceptance. Now, I know Autism Speaks is all about CURE, but I don’t think CURE is possible, so I’m going towards Acceptance. This is simple: you put on a pair of red shoes, or red socks, like these, or something else red, and take a selfie to spread around the Net. It’s so simple, and yet so bold. Of course, you can do something else for Autism…that is, the Twizzler Challenge.

The Twizzler Challenge is more complicated. Complicated, because…you need someone else to do it with. The point is, you and this other person start at the ends of a Twizzler, and eat it to the middle, like Lady and the Tramp. Of course, I don’t have anyone to do the Twizzler Challenge with, but there are some guys I would do the Twizzler Challenge with. Google these guys, if you don’t know who they are.

Let’s see….

Keith Urban

Harry Connick, Jr.

Michael Buble

Tyrese Gibson

Lou Diamond Phillips

Any member of New Kids on the Block

Emilio Estevez

Adam Copeland…he used to be Edge..

Benedict Cumberbatch…yes, even though I got mad at him, I would DEFINITELY do the Twizzler Challenge with him. He’s my current favorite. That’s why I got so mad.

And, of course, there are more people I would do the Twizzler Challenge with. So, whoever you are, the Twizzler is waiting, and so am I.

They Don’t Care About What We Say

I disliked the ladies of the Autism Society of the Bluegrass because they dismissed my viewpoint when I revealed I was autistic, too.

Parenting Autistic Children With Love & Acceptance

Remember a few years back when the Temple Grandin movie came out? The part that really sticks out for me was at the end of the film. When Temple stood up at the conference and told the room that she was Autistic. All of the parents and professionals were so excited and practically begging to hear her voice. Maybe it was different for Temple Grandin. Maybe they added that part for dramatic effect. Maybe that particular autism conference took place in an alternate reality….like Bizzarro World. Because in the real world, nobody cares about what we have to say.

As a parent of an Autistic child, I am usually seen as an “authority” on autism. That is, until I also disclose my own diagnosis. I am Autistic too, and the things I have to say often conflict with what people think they know about autism. I know that I am…

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“Is This Weird?”

I recently had a dream in which I was in a prison, with orange jumpsuits, where the prisoners were being killed. I’ll spare you the gruesome details, but that was the gist. I initially thought the dream was about being recognized as a woman, but I soon realized afterward that it was a dream about the consequences of trying to fit in too hard. As a girl with autism, I had begun to doubt my own instincts about what I was doing. I would often not admit to things, like the teenage crush on the Green Ranger, because I thought they were too juvenile or “weird.” And so, as I grew into my 20s, my instincts were constantly being thrown for a loop by my sisters, who wanted me to think that I needed them to survive…to control me. I was constantly thinking I was weird and unfit for society. After they sent me back to my mother, in my state, I relied on her to figure out whether I was too weird and unfit for society. It took me a long time to come to this, but I realized that it was okay to be weird, to be the one who watches anime on the computer, or obsesses over the latest star. I was not okay with being weird for a long time, because it was taught to me that weird was wrong, that it was not okay. Maybe this is my final coming of age, but I have finally figured out that it’s best for me to just be myself, no matter how weird it gets. So, in case you missed it, I am breaking out of my societal prison, and just getting to being myself. I’ve been told this about people who think I’m not that good: Those who mind don’t matter, and those who matter don’t mind.

Easter: Looking Back, Looking Forward

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Today was a walk down Memory Lane. We were in the store, shopping for my little nephew, my mother and I, and we saw such wonderful things. They reminded me of childhood. There were little Peeps-marshmallow chickies and bunnies in all sorts of colors. I remember when they were only in yellow, and only shaped like little chicks. Now they have Sour Watermelon Bunnies. (yech) Do you remember when you could get a little Easter dress, with white patent leather shoes, and socks with little lace accents, and sometimes a hat and purse…I also saw eggs, different styles of coloring them, and even pre-boiled eggs! I remember boiling eggs on my own, and just dying them different colors. We also saw various toys and games for Easter, too. Oh, and all the candy. Being on a weight loss plan is definitely tempting…one might say. Somehow, though, the only things that actually tempted me were the Cadbury Crème Eggs and Caramel Eggs. (Isn’t it a tragedy that Cadbury can’t come into the U.S. anymore? Boo on you, Hershey!) Somehow, the only things that tempted me were all the little stuffed animals. I don’t know why it’s not appropriate to have a stuffed animal on your bed after a certain age, but I would not judge you if you had one. Just today, an adult friend confessed to sleeping with a stuffed animal. It did not bother me one bit. (Of course, I have a live one in my bed, but he’s a good boy.) There’s so much to remember. I made the basket for my nephew with all of his favorite things: Cadbury Eggs, a milk-flavored bunny, M&M’s, a Reese’s peanut butter egg, jelly beans, and a marshmallow bunny. He’s going to love his basket. I forgot to tell you: he’s turning 24 right before Easter.