Sunday, May 18, 2014

*Tough As Nails

Photo credit: Black Heart Creatives
I've never been clear as to how she found out the state of our living situation, but she did, and she, my temporary savior, came to pull me out of the circus tent that evening.

Aunt Norma was certainly a tough disciplinarian, but I didn't mind. Strict rules felt safe. She brushed my hair and put it into a ponytail, which I loved as it was out of my face—I never like the irritating, scratchy feel of hair on my cheeks. It drove me crazy. We had dinner at the same time each night. It felt like someone was looking out for me and I didn't mind her telling me I had to be in the house before the street lights went on and I had to stay in the yard. 

She had children of her own, my twin cousins Natalie and Nicole. They were quite young at the time, not much older than three, making this arrangement for me a temporary one; her hands were full. 

For my brief stay, I certainly felt loved and cared for but still my heart sunk. I missed Mum. I worried about her. I missed Tony. I felt a constant sickness in my stomach and chest, and had a hard time eating without feeling like it would come back up, though I forced it with my mind to stay down as I didn't want to get in trouble for wasting food. I fought tears as I realized no one would be there to look after my mother. Who was going to make sure she was up for work on time, eating dinner, and breathing? Would I ever see my brother again?

Aunt Norma didn't like when I barked, so I ceased doing it around her. She didn't need to be protected anyway. Tough as nails, she was. 

Mum sounded as if she were very angry with Aunt Norma that night, but I couldn't understand why. I was obviously an obstacle in her new relationship with Bill and surely Lynn the prostitute had loftier things to do than to dress me up in her leather and spikes on a Tuesday morning. 

Excerpt from Chapter Fifteen: Changes | Everything's Hunky Dory: A Memoir

Sunday, May 11, 2014

It Is Mother's Day.

Mum, each day that passed since you've been gone I learn a little more, I grow a little more, I accept a little more. I'm coming to understand you as I can now see you in me. I love you and miss you more than I could ever say. I cannot say "Happy Mother's Day", because that would be a lie, and you know well I've never been a good liar. So instead I'll just acknowledge it for what it is, and say, "Today is Mother's Day. I'm thinking of you today and everyday. Wish you were here for Breakfast with The Beatles." 

Love and miss you Mum. 

Blackbird, fly. 

Wednesday, May 7, 2014

Good Intention? Autism Awareness vs. Acceptance

I happened upon a video today posted by a well-known autism "support" website. The video was titled Army of Autism Awareness Angels Flash Mob - World Autism Awareness Day 2012. I knew when I clicked on it that "Flash Mob" and "Autism" couldn't necessarily mesh well, but I was willing to take the risk. Hey—I was bored. And it had been shared 21,582 times, so it must be worth it. Right?

Oh my. 

Let me begin by saying I am confident this group of people were very well intentioned and must have incredibly loving hearts to coordinate such a large scale event. It was quite impressive.

With so any people. 

In such a public place. 

With so many bright lights. 

With such incredibly loud, obnoxious music. 

[Closing eyes and covering ears, hoping for Scotty to beam me up . . . ]

If this group of people in the video were "aware" at all about autism and one of its main ingredients, sensory sensitivities, they would have realized this was an incredibly ridiculous spectacle. Sensory overload, at its finest. 

A crowded mall with its bright, buzzing, florescent lighting, crowds of people, strong perfume, and a different genre of music playing in each store passed has the potential to push anyone (on or off the spectrum) into a full blown meltdown. Then you add the crowd, dancing, jumping, woo-hooing, and clapping next to an ESCALATOR (am I the only one that still gets a fright from these beastly things?) — I'd need an escape plan - pronto. They put children (not sure if they were autistic or not) in the middle of a circle and danced around them, clapping and woo-hooing (I'd have been on the floor at this point covering my ears, hoping anyone, the most evil of serpents even, would pull me through the floor to get some quiet in his warm bowels). And the grand finale: a group of hot, young girls ride down the escalator in tiny red t-shirts, short shorts, and high heels (seriously) holding small signs displaying the words "Army of Autism Awareness Angels". Did anyone even see the signs? Likely not, with the red colored shirts (which everyone knows the brain cannot NOT see the color red) - oh, and the hot girls, naturally. 

This event would get a 10 in my book . . . if it were a demonstration of what causes an autistic to meltdown and isolate from the rest of society. A 10 if it were a demonstration to parents as to why their daughter is screaming and covering her ears, or why their son is hiding in the clothes rack in Macy's and won't come out.  

Being "aware" that autism exists isn't helping anyone, nor is it even necessary. I think we've down-right saturated the media with knowing the word "autism". Even the label itself isn't really helping anyone as every autistic is different and it certainly isn't helping when the actual difficulties the autistic is having aren't even being considered (such as the numerous non-verbal children who consistently displayed head-banging behavior before finally being diagnosed with severe ear infections; or the kid who screams incessantly while covering his ears in Costco because the florescent lights are buzzing and blinking creating a sensory tornado in his brain and body). 

Children and adults, verbal and non-verbal alike, are often drugged, set aside, and not considered when it comes to our own feelings, wants, needs, and desires. Silly when something like a baseball cap in Costco does wonders (it does for me). Earplugs-brilliant. 

Einstein (who many believe today would be diagnosed as being somewhere on the autism spectrum) didn't speak until he was four. In fact, mathematics historian Otto Neugebauer once told a rather charming, inspiring story about young Einstein. 
As he was a late talker, his parents were worried. At last, at the supper table one night, he broke his silence to say, "The soup is too hot." 
Greatly relieved, his parents asked why he had never said a word before.  
Albert replied, "Because up to now everything was in order."
Imagine if young Albert had been institutionalized, drugged, or simply not listened to?  

Imagine a group of people decided to do a flash mob for "poor people awareness". Imagine them paying to have hundreds of t-shirts made to advertise the event, handing out food and drinks for the dancers, and holding the event in a place like Beverly Hills, California (not a very poor-friendly place). And imagine Victoria's Secrets models walking out in lingerie (nice to look at but inappropriate!) holding hand written "Army of Angels for the Poor" signs above their heads. How is any of this helping the poor? All the money and energy spent getting t-shirts made, food prepared, and money to pay the models could have easily gone to feeding or housing the poor. But no one asked the poor what would help. And we're all quite aware that the poor exist. Capishe?

As good intentioned as these folks must have been, I don't think they realized at the time the contrast of their actions to what they were trying to raise awareness for. It is my hope that Autism Acceptance is the message more widely spread. It is my hope that all people, as good hearted as we often are, take more time to listen, to understand, to learn from one another. I'd much prefer someone take an interest in me as a person rather than spread the word about my overgeneralized label.