Author Archives: oystersandlife

Um, congrats?

Posted on by
Reply

Life is not fair. We should all know that by now. There is no way it can be given our different perspectives. What seems fair to me may seem patently unfair to you. Without going into the whole socio-economic debate, life is just not fair.

But how do we determine “not fair” versus “discrimination” in today’s world?

I’m physically disabled. Is it “not fair” that non-disabled people use the stall intended for disabled people? I’d say yes. I would happily pass every single thing wrong with me to an individual who wants that stall. I don’t considering children to be a disability. Use the family restroom please. I also don’t consider luggage or packages to be disabilities. They don’t get their own seat on public transportation or qualify someone as needing the extra space in a stall.

I’m Autistic. So are two of my children. Is it “not fair” or “discrimination” that we face daily as we navigate a world that some feel we don’t belong in? Both, from my perspective. The “not fair” part consists of stares, disparaging remarks, being left out and flat-out bullying. It would be great if these things magically went away. However, because we’re all different and we perceive things differently, they never will.

The “discrimination” part comes into play when non-Autistic people insist on denying Autistics a voice in the discussions about Autism. When parents pour bleach into their children’s bodies to “cure” them of Autism. When our communities fail to work with us to develop supports so we can be active participants. When our co-workers treat us differently because we wear the same style clothes all the time (itchy tags!) or have responses that aren’t what is expected. This is discrimination. This is determining that because of a different way of looking at the world, we are less than deserving.

I am not less than deserving. I am not “taking” anything away from anyone else just by thinking differently or needing some extra space in a stall. I am not in need of fixing, although I’m happy to try to learn more tools to cope with a world that is overwhelmingly intolerant of differences. I will keep trying to help people understand that different is good. If we were all the same, the world would be a very boring place.

Congratulations to those who feel the word is fair and just. That must feel pretty darn good. For the rest of us, we will continue to speak up. Louder and even louder so our voices can be heard over the din of those who would silence us.

 

Shame

Posted on by
Reply

I’d bet many of you know how shame feels. Probably from both the receiving and giving sides. Sometimes it’s unintentional, like when you say a blooper. Sometimes it’s purposeful, such as when you scold a child. Either way, shame hurts.

I have some quirky habits that make it possible for me to experience shame on an almost daily basis. My speech is an easy target. Sometimes I use vocabulary that doesn’t fit the conversation. Other times my speech is affected by a medical condition. Regardless, at least one person per day makes a comment that shames me.

April is Autism Acceptance month. You may be wondering what shame and Autism have in common. Quite a bit, actually.  If you buy into the rhetoric of a certain organization, Autistics need to be cured. How can I not feel shame when people are publicly promoting the idea that I’m defective because of my differences? How do family members feel when onlookers critique their loved ones? Shame.

Shame can lead to desperation. Feelings of worthlessness surface. Feelings of failure. Feelings of inadequacy. People are driven to find ways to help each other. It’s hardwired into most of us. The people who bring you “light it up blue” are the same ones who capitalize on these feelings to raise money that is used to move society a step closer to eugenics.

Autistic children grow up to become Autistic adults. A child who hears they are a burden remembers. A child exposed to hurtful speech remembers. A child who is told they are worthless remembers. The feelings of shame grow deeper as we age.

Acceptance is the key. Accept the differences. Accept the whole individual. Put an end to shaming others for being different. It starts with you.

Growth

Posted on by
Reply

Growth is a fact of life. We grow older. We grow taller. We hopefully grow smarter through our experiences.

Sometimes growth is forced upon us. Think of the square peg being pounded into a round hole.  Eventually the peg will fit, but at what cost? How much of  “you” gets broken off in the process?

 

worndown

Forever Young

Posted on by
Reply

And may sunshine and happiness
surround you when you’re far from home
And may you grow to be proud
Dignified and true
And do unto others
As you’d have done to you
Be courageous and be brave
And in my heart you’ll always stay
Forever Young, Forever Young~ Rod Stewart, Forever Young

Eldest has a birthday today. It was kind of surreal last week as I was at the hospital where she was born. The place has become so big I didn’t recognize anything. Time is funny like that. You forget details even though you remember the event.

coleenbaby2

I remember Eldest as a baby. The time she ate too many carrots and sweet potatoes. She turned orange and I thought it was jaundice. Frilly outfits. Her first “dance” in the living room. The curly hair. Oh, the curly hair.

coleencurly4

For a time, Eldest showed no fear….

coleen5

But she remained refined….

coleen3

I’m so very proud of her. In a few short weeks, she will embark upon the next stage of her life. I’m struggling with the words to say how grateful I am that she still calls me to talk about her day. I’ll receive a text asking a question or telling me what’s going on. I see a social media post that makes me smile.

coleen16

And when you finally fly away
I’ll be hoping that I served you well
For all the wisdom of a lifetime
No one can ever tell

But whatever road you choose
I’m right behind you, win or lose
Forever Young, Forever Young~ Rod Stewart, Forever Young

New Autism Speaks Masterpost (Updated 6/20/14)

Posted on by
Reply

Please research the organizations you support! Here is an excellent master post about one organization that everyone should read.

New Autism Speaks Masterpost (Updated 6/20/14).

Rainbow

Posted on by
Reply

I will not light it up blue.

I do not support Autism Speaks in any of its forms. I do support Color the World, since each one of us is unique and individual as the colors we see. I also tacitly support Light it up Gold and Light it up Red. Light it up Gold is for the hearts of gold many autistics display. Light it up Red is directly countering light it up blue as red is perceived as the primary opposite of blue.

 

This was written by my daughter. Please take the time to read and educate yourself before you buy into propaganda. You can find the original at

https://www.facebook.com/notes/thoughts-from-a-female-aspie/views-of-the-page-admin-on-autism-speaks/288620804633865

This is a basic list of things to look into with Autism Speaks:

Per DSM-V, I am autistic (even though I disagree with DSM-V). I do not support this organization at all. I do support educating individuals who believe that I should be cured, and about organizations that they choose to support.

 

Other links to look at (some repeats):

 

 

 

 

Divergent

Posted on by
Reply

I feel that Veronica Roth’s books are filled with allegory. I’m certain the social justice message is intended. But what if you frame the factions around the context of Autism?

Abnegation….others before self. How many Autistics let others dictate their needs? Where does self-care rank for a person who is desperately trying to fit in? For me, it used to be pretty far down the list. I’ve learned how to tell people no in recent years, although that can be very stressful too.

Erudite…knowledge seeking. Yep, I have a lot of knowledge. Mainly because I become absorbed in ideas and my mind takes off with the possibilities. I’ll track an idea down to its origins if it interests me enough.

Candor…the truth shall set you free. Unless you speak too loudly. People say they want the truth, but when you speak what you believe no one listens. Being candid can sometimes (most times) end badly.

Amity…kumbaya! Wouldn’t it be fabulous if we all got along and accepted each other? I know I’d be less stressed and more care free if I didn’t have to worry about what other people thought of me.

And Dauntless….the hero in us all. Willing to lay it all down and show what you can do. Protectors of society. Keepers of independence. My wild side.

Divergent. All five factions in one. Outcast. A threat to the norms. Must be cured, yet holds the key to the future. Hunted. Shamed. Cast-off.

Divergent. Maybe that’s a word people could understand to describe Autism. Forget the puzzle piece. Let’s be Divergent. Recognize that the uniqueness is worth fighting for. The Divergent are not less than. They are different. Imagine if the Divergent in the series had been killed off. While some turmoil would have been avoided, secrets would have remained locked away. Most of the turmoil was caused by factions that felt threatened. People were raised to believe the Divergent were inherently bad. Sound familiar?

I don’t believe I’m inherently bad. I’m different. I’m difficult to understand. I don’t fit in a tidy box. I speak too loudly sometimes and people get uncomfortable. I know “too much” which makes “experts”  very uncomfortable. I’m challenged every day to stand up for myself. People judge me based upon a label. I have to be strong enough to stand by what I believe.

Divergent has a nice ring to it.

On Your Time

Posted on by
Reply

Oh, the dilemma. I like to do social things. I like being included. I like receiving invitations.

But, those have dried up for a variety of reasons. My health is unpredictable. My “friends” tell me they don’t want to burden me with their requests. Some people have decided that Autism is a deal breaker. Others just faded away.

Then there’s the flip side. I ask, plan and then get turned down at the last-minute. Sometimes I have gone above and beyond. Maybe that’s the problem. Maybe I try too hard.

Then I wonder what’s wrong with me. Why do people turn me down. What can I change. What am I doing wrong. I can’t get unstuck from “me” being the problem.

In reality, other people are making choices. We all get to choose who we hang out with, what activities we do and so on. I can’t make those choices for other people. I can make myself available, that’s  it.

Whether I’m traveling across my city or across the country, it’s their choice. I don’t like that people have led me on, making plans and then cancelling. Or choosing a “better” option. It hurts, a lot. Everyone has a reason and I guess my job is to accept and move on.

 

Plans

Posted on by
Reply

I have a hard time with plans. I like to know what I’m doing and when. I will spend hours working out schedules. Most people think I fly by the seat of my pants. I actually plan different scenarios and see which one pans out.

I guess I like knowing the possibilities. I gather information and stash it away for when it might be useful. I wouldn’t say I’m inflexible, at least to everyone else. But I need my plans.

So when my plans fall apart, I struggle. A lot. Because my plans usually involve other people, I try not to let anyone down. And become self-critical when others change their plans. What did I do wrong? Did I offend someone? Did I say something out of line? Yes, it’s always about me. I accept responsibility for things that are not even mine in the first place. It’s not an ego thing. It’s more of a security blanket type thing. If I know what’s coming, I can plan for it.

I guess this is my routine that is the strongest as far as Autism goes. I have many tools for coping with it, including writing this blog. I’ve tried shifting my thoughts to more of a “let it roll” philosophy, but I always come back to the land of plans.

So please, dear readers, know that changing plans is hard for many people. If you can’t or don’t want to do something, please speak up. Kindly, of course. My plans, and sometimes my sanity, are counting on you.

 

Dear Teacher

Posted on by
Reply

I know you mean well. really, I truly believe that you started your journey with that spark. But, maybe you’ve forgotten why you’re here, in this job. Twenty five or even thirty years is a long time to be in a career that has such high emotional demands. You are not only an educator. You are a nurse, a psychologist and perhaps a shoulder to cry on. You are a cheerleader and a disciplinarian. Sometimes you feel like an ATM, buying school supplies and lunches for kids you know won’t get anything unless you take care of it. That’s a lot of demand placed on one person who gets paid less than $30 per hour.

Today I watched you with your students. I heard you yell in a way that made me cringe. I heard you call a kid stupid. I watched your body language, with your arms folded tightly against your chest. I saw you interact with other teachers, cutting them off mid sentence so you could say your two cents worth. The looks from your peers should have been a clue, but you were too caught up in yourself to notice.

The message you are sending is that you don’t care as deeply as you once did. The jaded tone in your voice tells me you are just treading water until you retire. Your peers see it. Your students see it. And yet, you seem oblivious. You have all the answers. You play all the games. No one could possible be as “good” as you.

But your actions are speaking very loudly. When you lose the ability to truly listen, it’s time to stop and think about things. When you resort to name calling, it’s time to examine your reasons for remaining in the career field. When you rely on passive-aggressive relationships to maintain your “position” in the hierarchy, you’ve lost what made you an excellent teacher. When you no longer care what message you are broadcasting, it’s time to let go.

You’re not the first teacher I’ve met with this attitude. You probably won’t be the last. It’s sad that in this career field there aren’t many opportunities for sabbatical or even true job changes. You will work your entire career doing pretty much the same thing. And while this job is vitally important, you will become jaded because of expectations, curriculum swerves, student behaviors and lack of support. I just wish you could see yourself and realize what you are really saying.

What you are telling students…they don’t matter. You have more important things to think about. “I” am not important. Why should “I” try when “You” aren’t?

So, dear Teacher, I encourage you to rethink why you are here. What is the purpose of you showing up every day? How can you change so your students change? What can you do to improve the school so everyone can learn? Because it’s not about you.

Sincerely,

Your Future