Tuesday, December 18, 2012

Cloaked in Authenticity

Note - I just found this post from two years ago on a Wordpress acount I made but never used more than once. I originally titled it "The Girl in the Prom Dress" but I like this title better. Two years ago.... This was a prescient post. I like it. I don't think it's on this blog so I am posting it here.


I was flipping idly through some pictures that had been posted to my Facebook account. I stopped short when I saw my prom picture. What a different world, I thought. Never again will you ever see me in a dress. Much less a sleeveless one, with long hair, a necklace an even, of all things, a handbag. Although I have to admit, the dark blue color sure did look good on me.
My friends all wore long, flowing dresses, but I stood barefoot in a simple, short, dark blue dress loaned to me by a friend only a few hours before, when I had made a last minute decision to go to the prom. Dances are not my thing, but despite my objections I decided to give it a try. My hair was long, blonde and curly, one of the few times I have had hair longer than an inch in the last ten years.

Then I flipped to a picture I had just added recently of me on a hiking trip with some friends. The picture was far from glamorous. I had on a grungy grey sweatshirt, white cotton pants and very short to almost non-existent hair. This, or some variation, is my usual outfit. The picture was less than flattering, but I didn’t care, because after all, it was me. My smile was joyous, and to me that meant everything. I had captured the joy of the day with that picture.

Many times, over the years, I have been told by well-meaning people that I should change my appearance. People would like you better, they say. You’d get along better in the world, they say. People judge by first appearances, they say. Why don’t you grow your hair out? Why don’t you wear nicer clothes? Is that really the nicest clothes you have?

What they, or at least the world at large, often don’t understand is that I don’t have the luxury of looking nice. Severe sensory issues prevent me from wearing almost any piece of clothing known to man. I need soft, loose, cotton clothing to be comfortable. And even in that category, well, very few things work. I have spent several hours in large clothing stores before and came out with nothing. My dad once took me to Bloomingdale’s on a New York City trip, and all I came out with was a Tamagotchi t-shirt. And that was good for me! Everything is too tight, the textures are uncomfortable, the seams are sewn in the wrong place, it sits on my body wrong, it’s got buttons, and so on and so forth. And that was before I developed chemical sensitivity issues, which complicates the issue even more.

Because of this, a good clothes day for me is when I can actually wear them. Anything, that is. I’ll take anything that doesn’t make me want to start screaming when I put it on.
As for my hair, I can’t stand the feeling of hair on my head. It just feels heavy, and when it gets too long, it is literally the only thing I can think of until I get it cut.

I’m a firm believer that people should be functional in their clothing. I don’t understand why people torture themselves to wear high heels that make their feet hurt all night, or squeeze themselves into an outfit that makes them feel like they can’t breathe just because they think it looks good. As far as I’m concerned, if I’m not comfortable in something, I’m going to be grouchy and irritable all day or night because of it. This will
affect my interactions with others, and give them a bad impression of me. It will affect my experience of them negatively as well. The effects of these uncomfortable, intolerable clothes will send my stress levels through the roof, and make my coping abilities nil. Now, why would I choose to have clothes or hair that looked good over being able to function in the world and having a smile on my face when I interact with others?

When I looked at the prom picture of me, with my curly blonde hair and my perfect dress, for a moment I felt a stab of envy. This is the kind of girl I could be. I could look like other people my age if I wanted to. It’s possible. I could look, well, more “normal.” But then I remind myself how foolish this is. What did I really want when I looked at that picture? I wanted what went along with my perceived notions of what that girl’s life would be like. I wanted the life of a typical 20-something. I wanted people to like me; I wanted lots of friends; I wanted a life of social ease and happiness. It’s an illusion, of course. Because that isn’t me. And you don’t get friends, social ease and happiness by being something you’re not. My warm smile, my enthusiasm, my care and concern for others? Those will, in time, get me friends who mean something to me, and they’ll do it whether or not I’m wearing a Tiffany dress or a Marshall’s grey sweatshirt. Mascara, tight clothes and expensive haircuts do not a make a person into who they are. Integrity, kindness and being true to oneself do. So when I look at that prom dress now, I am glad to have it as a memory of a time when I tried something new and succeeded. But I am even happier that the real me was still waiting for me, unchanged, when I got home that night.

Monday, December 17, 2012

A Hanukkah Miracle?

Congregation Bet Ha'am, South Portland, Maine
It's not often I come home from an outing with a Hanukkah song stuck in my head in the month of December (or any month, for that matter).

Jingle Bells? Sure. Walking in a Winter Wonderland? Of course. But "Light One Candle," by Peter, Paul and Mary? Never.

And I must say, it was an intensely pleasurable experience. Or would have been if I remembered more of the words.

How did this happen, you ask? I went to a Hanukkah party at the synagogue in South Portland.
There was a service, and social time with crafts and games afterwards.

I have only been to a synagogue a few times in my life, and I can't actually remember any of them.
The list of buildings I do go into is very small, and I was going alone.
Yet, I still decided to go.

My goal is to increase social connections, so any experience that sounds feasible and somewhat interesting I've been trying to do. Fortunately, this place has concrete floors (amazingly) which work well for my chemical sensitivities. That was the main reason I felt comfortable going. I wanted to celebrate Hanukkah, which I hadn't done properly in several years, and I wanted to meet new people. I knew it was on the bus line and I even knew where - only 2 miles down Main St on the corner of the next street, a short ride. The bus times matched up.

And, of course, there was the promise of cookie decorating. The other day I had wanted to decorate SOMETHING, but all I had was food coloring and marshmellows. Apparently, food coloring isn't really the ideal medium for marshmellow decorating, but I tried.

                          My attempt at a marshmellow menorah with food coloring designs

So, since I felt I needed more stimulation in life than playing with food coloring, I decided to go. So I could play with frosting instead. No, just kidding. Although I must admit it did factor into my decision. =)

They had a greeter at the door, who led me to a library area. There were 2 people my age there who were quite friendly. We talked for a few minutes, and then they led me to the sanctuary area for services, as they were leaving and wanted to find someone for me to sit with. Mission accomplished, I was talking with this woman, having no idea what to expect from a service, when I heard and saw the rabbi singing. With a guitar. My mouth dropped open. "He's SINGING!" I said. It is entirely possible that my idea of modern religious services needs updating, but I had no idea that singing was part of it. It was beautiful.

After lighting the menorahs, he continued with the Peter, Paul and Mary song "Light One Candle." I love this song and listen to it almost every day of Hanukkah. I was shocked and ecstatic, actually, because I had been dying to hear this sung live. I sung loudly and enthusiastically. The woman in front of me said "I was wondering how you knew all the words!"

I was silent for most of the remaining service as it was all unfamiliar to me, but kind of nice to hear. The sound of the language was familiar, anyway, even if the words were not.

I met a woman in the social hall in the ensuing social portion of the night who was from the town bordering my hometown and had kids in my former school district. We hit it off with a discussion about that, and she ended up giving me a ride home.

So, all in all, I  think it was a success.

That's after I had gone to the City Hall menorah lighting the previous Saturday (new building for me), an impromptu doctor's visit (something I would never have considered doing in a million years before) that Tuesday, attended a meet-up with a recently made friend and 2 new people on Wednesday.... and spent the evening scoping out (ie *going into buildings that I would not usually set foot in*) possible restaraunts/cafes/coffee shops for possible meetup locations in Portland on Thursday. And oh yeah add the going to a synagogue for the first time I can remember on Friday.

Who is this person? I barely recognize her. But I like her. I hope she can stay and play...

I was pretty beat after going out 5 out of 7 days.... Yes 5 out of 7 days.... which really must be some sort of record for me... but strangely, after one day of rest, I was actually ready to go out again today. I didn't, because the weather is crappy and it got too late, but I could have. (Hey, the light burned for 8 nights for the  Maccabees, I think 4 consecutive nights for me is pretty damn good.)

So I'll just wait for my gelato meet-up with what will hopefully be 4 new people plus my friend M on Tuesday... and maybe the senior luncheon at the synagogue on Wed if they let me go.

Yeah... I hope this lasts. =)

Saturday, December 15, 2012

Autism and the Sandy Hook/CT Shootings

In the wake of this terrible tragedy, there are no words that are adequate to express how horrible it all is. So instead I am going to point you to Paula C. Durbin-Westby's excellent post on the subject. 
Paula C. Durbin-Westby is an autistic adult who has offered some views as an autistic (Asperger syndrome), as a parent and as an autistic parent on the shooting in Connecticut in Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims .

She says:
Today, December 14, 2012, I got a text about four minutes before I walked into my son’s school to play the piano for a winter program. The text said that 18 (then up to 20) children had been killed at an elementary school, not unlike my son’s. Children the age of the children I would be making music with in a few minutes. I was in shock. The texts I was receiving came from my dear brother, who has small children of his own. Since I was not online or near any media sources, he wrote to me what I was seeing on breaking news, and we texted together, as parents, about how horrible, how unthinkable, this heinous act was. His children were with him; mine was in school, and I had to resist an overwhelming impulse to sign him out and leave.

Please read the whole post at

Tuesday, December 11, 2012

Use Your Words

"Use your words" is a statement often used with small kids who are pushing and shoving or otherwise behaving in what is considered an unreasonable manner. It is a reminder to use language rather than behavior. Behavior clearly is communication, but not always the most useful form of it.

This post, however, is about a different form of using your words. It is about using words to define yourself. It is about the words others use to define you - or don't.

Words are powerful. Words have the ability to shape lives. Your whole idea of how the world works, your whole idea of who you are, and your role in the world. All defined by words - or feelings that originated in words.

What do you remember about the way you were described as a child? What is your first memory of yourself? I was described as smart - although I always knew there was something wrong or different about me. There were no words for that, though. Asperger's was not a diagnosis I would get for another dozen years or so. I was told that my intelligence would come in handy when I was older. I have one memory of a summer camp of some sort. Sitting on a gym mat. A teenage counselor telling me I seemed much older than the other campers, more mature. All good things, she assured me.

But how? How could these be good things? I was 10 ( and 8, and 12, and 14, and you get the idea...) I wanted to know why I wasn't like the other kids my age. I wanted to fit in. I wanted to be able to talk to them. I wanted to be, just once, not so "separate." And I would have traded all the smartness in the world for it.

Sometimes I was "sweet." Sweet is such a non-specific word. I grew to hate it. Wasn't there anything else good about me? So far I knew that I was smart and I was sweet. Not exactly the recipe for success in my book.

This was countered by far, far too many messages from my peers about being different, awkward, weird, and "other." Messages about being socially incompetent, even about being selfish or deeply flawed in some way. These messages were not usually specific, but they were coming from everywhere, every corner of my existence, so they must be true. They didn't hold a candle to "smart" or "sweet."

People believe that they are who they are unless given good reason to believe otherwise. I think there is a lack of positive reinforcement in our culture. Good traits are rarely highlighted. People rarely have the opportunity to change their mind about themselves for the better, unless they meet someone willing to show them, and to be persistent about it.


I finally had the opportunity, recently, at 28, to begin to have cause to redefine my 20 year old perception of myself. I joined a meetup group where the members seem welcoming and to genuinely like me. Yes, this comes as a surprise. I imagine it will for quite some time. But it's a start.

I met a longtime blogging friend in real life, who after the meeting devoted a whole blog to the meeting. Make sure you go look at Jess's blog at Diary of a Mom. https://adiaryofamom.wordpress.com/2012/12/04/kate/

Her blog nearly brought me to tears. She used her words. Thank you, Jess, for using your words.

"The concrete things that I knew about Kate are that she has Asperger’s, and also that she has some pretty serious sensitivities to fragrances and chemicals that can make life particularly challenging.
So that’s what I knew.
But please believe me when I tell you this — those are NOT the things that you notice when you meet Kate. Instead, what you see — what you can’t possibly miss — is her energy.
She laughs easily and she laughs a lot. And her laugh is infectious. It’s physical and it’s big and it’s all-encompassing. It draws you in and it wraps you up and it takes you along on its journey to a whole other place — a better, brighter, lighter place.
And even though it’s different from the one that I know so well and love so much — its effect on everyone around her is eerily familiar.
Brooke’s belly laugh – so different from her sister’s, so very much her own. The laugh that starts with her shoulders and takes her whole body along for the ride. The laugh that sets her eyes on fire and whose sheer energy could launch a rocket ship and send it into orbit. The contagious laugh that leaves an electric happiness in its wake."
The silent, unanswered questions about what I could possibly have to offer someone - the perception of  myself as a burden - began to be erased, as if with a Magic Marker, with Jess's words. Oh, sweet words, a gift to me to begin to redefine myself.

A friend tells me I bring out the kid in him, and makes him feel care free. A recently met friend tells me that I would make a good therapist because my experiences bring about a sense of empathy and openness to other's experiences that she finds very attractive.

Words, words. All they are are words, but they have the power to change a life. Mine. Yours. Everyone's. We need to be honest with each other, not just about what our friends and loved ones have to work on, but what we love about them, and why. We need to use our words. We need to be a community.

You are at a point where trust in life and your spirit, higher self or soul is paramount or even trust in the goodness of the universe.  You are at a place in your life where you are pregnant with potential which is filled with your greatest wishes and your greatest fears, it is up to you which ones you will give power to.

The above is a quote from a recent meetup I attended. I can't think of anything more accurate for where I am in my life than those words. Which will I  choose? Will I have the strength and resources I need to choose my dreams over my fears?

I've spent my life living, it feels, as one-woman island, perhaps due to my Asperger's. Or perhaps due to the confluence of many different forces, no one's "fault" but present nonetheless.

So my single, number one goal now is to find community and build social connections. Because only with that can I find the strength, courage and resilience to choose my dreams over my fears. I can't be an island anymore. I'm not saying this as it's a done deal. I don't know how it will go. But I've made a good start. And I know that words, different words, a different community, a different environment and different experiences will hopefully produce a different person. Or at least the same person who thinks quite differently about herself - and therefore will become a different, and better, person.

You spend the first thirty or so years of your life learning about yourself and the world around you.
Then, depending on your life experiences, you can spend the rest of your life trying to un-learn these things.

Ironic, yes?