Third Wheel

One of the hardest things about leaving your heart on your sleeve is how much it hurts when people punch your arm. Maybe I’m in an “oh poor me” stage right now, but it feels like the universe is ganging up on me.

Yesterday, I both let myself down and then took a chewing out I didn’t feel was deserved. Today, plans fell through for a much anticipated trip. On top of this, my health issues have pretty much landed me in bed. I sure wish the universe didn’t think I could bear so much.

Yes, it’s easier to place the blame on the universe.  Conspiracy theory is so much better than realizing the truth.

Hurt

Where there is desire
There is gonna be a flame
Where there is a flame
Someone’s bound to get burned
But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try, and try, and try~ P!NK

We all have desires. They don’t all revolve around love nor money. We want world peace. We want peace in our neighborhood. We want ice cream. We want to end world hunger. We want to stop plagues. We want to get over our colds. We are humans and we want. Such is the metaphorical flame in these lyrics.

I got burned today. In my tireless pursuit to right perceived wrongs, I made a comment that apparently was inappropriate. It doesn’t matter the person on the receiving end has known me almost 2 years. It doesn’t matter that I have never done anything to make this person question my integrity. It doesn’t matter that the reasons for this statement weren’t related to the individual. All that matters is my comment.

It isn’t that I was called to the carpet that bothers me. I suspected that would happen when a third-party got involved. I’m really not that blind as to possible repercussions. What hurt was the lack of trust. The assumption that I had ulterior motives. I was judged and sentenced before I had an opportunity to explain. Boom.

Trust doesn’t come easy to me. You get my respect almost automatically, but you have to earn my trust. Consider it a gift. We can function on mutual respect, but a relationship is built on trust.

And, now it’s been erased. Another tick in the lessons learned column. I’ll keep trying, but it just won’t be the same.

 

Unicorns

Have the courage to say no. Have the courage to face the truth. Do the right thing because it’s right. These are the magic keys to living your life with integrity.~ W. Clement Stone

I am apparently a bully in the Autism community. I guess I didn’t understand that I’m not supposed to take “sides” or “support” anything but the name “Autism.” The idea of Autism as a disability is “safe.” Only upbeat and positive posts are “safe.” Isn’t that how the community got into this mess?

I posted a few weeks ago about “Vaguebooking” where people only talk about the very best parts of life. (http://oystersandlife.com/2014/09/08/vaguebooking/)  They don’t post about struggles, challenges or anything that **could** make them appear to be different. It’s like reading fairy tales all day long.

To be fair, not all the people on my friends list do this. But of the 30 or so people connected to the Autism community, only a handful post about anything but unicorns and rainbows. It’s okay if that’s what you want to post. Just don’t be angry with me for putting a damper on what you post.

Guess what? By only posting about unicorns and rainbows, people think you’ve got it all under control. That you, or your child, never struggle. That every therapy you’ve tried has been miraculous. That every diet adjustment made is a cure. It skews what people think about Autism. If you don’t live with Autism and all you read about are unicorns and rainbows, that must be what Autism is all about.

And then, tragedy hits. Again. The unicorn did a variation on what horses do. It got mad. It got ornery. But, it’s still a unicorn. Some people with unicorns can understand how someone tried to hurt their unicorn. They feel the unicorn is to blame for, well, acting like a unicorn. Others, in fact the vast majority, feel that hurting a unicorn is bad. Very, very bad. Don’t they know how precious and valuable unicorns are?

The reality is, unicorns poop. They mash the grass with their hoofs. They have to be fed special diets. They require grooming. And time, lots and lots of time. It’s hard work keeping a unicorn safe and happy. But we do. Many, many of us get up every day knowing how hard things are and yet, we keep our unicorns safe and warm and healthy and happy.

It never crossed my mind to kill my unicorns. Yes, they look different from horses. Yes, they act different from horses. But they’re my special unicorns. My gift of magic to cherish and take care of forever. Taking care of them is harder than taking care of a herd of horses. But the beauty I see when they’re around makes it all worth it.

So call me a bully. Label me wrong. Yell out Instigator! Because it’s true. I support self-advocacy. I support stricter legislation for caregivers who harm their disabled charges. I support boycotting an organization that tells people that Autism is a crisis. That Autism is a violent, daily struggle. That Autism must be cured.

I don’t want horses. Unicorns are awesome! If you were to take away their magic, unicorns would be just horses. You’ll work just as hard tending a horse as you will tending a unicorn. A horse means you’re just like everyone else. If that’s your goal, go for it. Try every diet, cure and therapy in hopes of taking away the magic. I choose to love and nurture my unicorns.

Because without a little magic, the world looks a lot dingier.

Tech

I recent link on social media leads to a confession by Steve Jobs that he recognized how “bad” technology can be for kids so he limited his kids’ exposure  http://www.inquisitr.com/1468612/steve-jobs-didnt-let-his-kids-use-iphones-or-ipads-heres-why/#kxOKeBIIzcp9WYFx.01 . Lots of comments ensued, including many stating that tech kills young brains, with the majority of parents of young children stating that they agreed. I had to put this on paper.

Seriously. I can’t even go to a restaurant without seeing some kid glued to a screen. Movie theater. Church. Wal-Mart. Driver’s license office. Doctor’s office. Vehicle (yes, I can see the video screens in the minivan in front of me). It’s the new, improved pacifier for older kids. And I’m supposed to believe all these people who state they only allow 30 minutes a day? Perhaps you should clarify and add 30 minutes per location, per day.

Technology is not some evil thing you need to banish from life. You are not a bad parent or person for incorporating tech into your life. It’s a different world out there than even 5 years ago. We literally have the world at our fingertips. And, kids are sponges. Kids have a knack for learning all about things before parents even know the thing existed. Innocence is very short-lived, regardless of your parenting choices.

Yes, kids need guidance and rules as they learn about the world. That applies whether the topic is not running into the street while playing or learning how to play Minecraft. Yes, you need to teach your kids how to balance their lives. Yes, us adults need to remember that we need balance too. All play and no work makes Johnny a very poor boy.

Just drop the self-righteous bit. I sat at my kid’s events over the years and watched parents playing Candy Crush instead of playing attention to their kids. I see you handing over your phones and bringing tablets into places where you want your kids to behave. It’s ok. I used to bring coloring sheets and crayons with me everywhere.

Don’t lock your kids out of their future because someone told you they **never** allow their kids to access tech. Most likely, they’re not being truthful. Your kids **have** to know about technology in order to get a job. Yes, even operating a cash register now requires keyboarding skills. You don’t have to go overboard. You can still monitor it.

If you expect your kids to abuse tech, then you should probably look at yourself. You are their role model. Monkey see, monkey do. If you’re not willing to go outside with your kids, then the message is that part of life isn’t as important as Candy Crush.

A thousand times a day your life is touched by tech. It’s not the enemy. Like all things, moderation goes a long way.

 

 

Label this

Hi! Thanks for stopping by! Would you like something to drink? Tea? Coffee? Soda? How about a snack? Popcorn? Chips? Candy? Maybe something healthy like an apple? Oh, you’re on a diet. You only eat vegan. You don’t consume caffeine. Is that apple organic?

I find myself pausing at moments like these. You came here looking for something. I offered up options. You turned me down, questioned and judged me in a split second based on this exchange. I’m a caffeinated, junk food addict. Period.

Well, you’re right on some days. I do like my caffeine and I certainly like my popcorn and potato chips right next to my Snickers bar. But does that really mean I’m an addict? Did you just lump me in with a group of people who absolutely cannot live without “something?” That’s a heck of a label to put on someone who enjoys treats periodically.

The way you label people marks them forever. Yet, everyone does it. Got a speeding ticket? Insurance company now says you are a high risk driver. Don’t look like the body mass index chart says you should? You are obese. Wore the wrong clothes to work today? You are out of touch.

Do you feel judged yet? Because I do every day. I think through a decision a hundred times. I’ll read this post for the next few hours before I hit publish. I’ll make sure no one has the opportunity to see me as less than. My car is perfectly suburban. My house is mostly clean in case someone drops by. My social media posts are mostly vanilla. My clothes are neutral. It’s a lot of effort to go through just to avoid a label.

I’m sure someone will still look really hard to find a chink in my coat of neutrality. It’s no wonder over 50% of Americans have some type of mental health need. Between being judged and holding onto that superiority complex, we’re a collective mess. Since we **need** instant gratification, here’s your pill.

But, what if there is no pill? What if you are living with a chronic illness? What if you’re neurodiverse? Ahhhhhh!!!!! What should I do?

I know. I’ll educate others about the damage labels cause. I’ll write about how nouns were designed to give distinct meaning to objects. I’ll talk about the fact that the English language lends itself to labels so readily. And, just for fun, I’ll give you this link so you can understand how the English language is supposed to work  :http://en.wikipedia.org/wiki/Sentence_diagram.

A tree is a tree. A table is a table. A person is a person. Any descriptors are actually observations. It’s an apple tree, because it produces apples. It’s a dinner table because it seats four or more. . It’s a person because it looks like one. Stop.

That’s right. The correct label for me is person. Because that’s what I am. No more, no less. You can put all the adjectives you like under that diagramming line, but it doesn’t change the fact that I’m a person. Adjectives are judgments.  Artificially assigned tags that seek to clarify the noun. I don’t need clarification. Person will do just fine.

Divided

Not for the first time, the Autism community is divided. In a widely publicized case, a mother attempted to murder her daughter and then commit suicide. It didn’t go as planned and the mother is now in jail while the daughter is home with her father and two siblings. Apparently, the child’s behavior drove the mother to this act. The television show that interviewed the mother showed the same video of the daughter hitting the mother over and over. It seemed like that was the only footage available. There were no pictures of the happy times, although if you search YouTube you can find several videos of this nature. The television show played right into the belief that anger and violence are the number one characteristics of people with Autism.

It’s not that way. It’s never been that way. But like all stories, it’s easier to grab attention by pointing out the most egregious parts of a story. The public’s perception of Autism needs to change.

I speak from many viewpoints. I am Autistic. I have 2 children who are Autistic. I am a special needs teacher who worked in classrooms dedicated to Autism. I also taught in classrooms dedicated to behaviorally challenged kids. And I taught in a resource classroom. I’ve taught grades K-21. I’m 46 years old. My kids are now young adults. So yes, I have a certain amount of perspective.

I’ve been hit by students. Punched. Bit. A dislocated shoulder here, a broken foot there and throw in a MRSA infection for good measure. I’ve had parents refuse to answer their phone during the school day because they just needed a break. I get that living with an individual with any disability is challenging. People with more challenges are more challenging to live with.

But, does that give me the right, or even moral authority, to murder someone?

The discussion on social media is all about how the mother needed more support. How she clearly isn’t in her right mind. And how her daughter’s behaviors put here in this position. Parents of children with severe Autism are making the mother out to be a victim. I guess you can put it that way. She is a victim of society, of people wanting to believe nothing like this could ever happen in their backyard. Of a society that, despite cries for help, turned a deaf ear.

But the daughter had no say in this. Her disability is such that her communication is physical. She can’t speak. She can’t tell anyone her story. She certainly didn’t tell her mother she wanted to die.

Division. Autism is a spectrum disorder. The impairments vary wildly. It is usually parents of children who are severely affected who want cures. Who send virtual hugs to a mother who thinks murder is okay. They’ve been there, they understand. No one else can possibly understand their lives, so they must sympathize.

And then there’s the rest of us. High enough functioning to fit, sort of, in society. Slow, quirky, anxious. But we’re managing. And many of us do not want to be cured. Many of us see Autism as an integral part of our personalities. It’s in our character. After living with Autism for 40+ years, I wouldn’t know what to do if it suddenly disappeared.

The face of Autism does NOT exist. We look just like you. We’re not monsters or mass murderers. We’re your friends, neighbors and co-workers.

We’re also members of your community, regardless of how we function or communicate. Years of hiding and denying that people with moderate to severe disabilities even exist has created an environment where non-disabled people are shocked by disability. Then they latch on to the “normal” aspect and minimize the damage caused by trying to fix something that is innate in an individual.

Yes, we need more services. Yes, we need more support. But most of all, we need acceptance.

You knew me as a child and called me an introvert. You knew me as teenager and called me quirky. You knew me as a young adult and called me weird. You knew me as a co-worker and called me eccentric. You know me as an adult and I know there’s room for all of us.