To Every Season

A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones
A time to gather stones together~ Turn, Turn, Turn, The Byrds

I follow a number of bloggers, many writing about Autism. Several have young children and over the last 5-6 years I’ve read their posts about their kiddos growing up and doing things they never expected. I’ve lost count of the number of times I have wanted to reach into my computer, pat those parents on the shoulder and tell them it will all work out.

I know it’s human nature to not take advice. I’m human, really. I don’t always listen. I have learned that other people have been through what I’m now dealing with in my life. I read their social media. I’d bet most of them don’t even know I’m stalking them; snatching up every crumb of information I can as I struggle with new problems.

I wish I could tell these parents of Autistic kids that it will all work out. Do not confuse that with “it will all be okay” because it won’t. Okay is a term people use like a consolation prize. Every one of us has to grow and change at our own pace to become the best people we can. Things may not always turn out the way we want, but each experience provides opportunities to see the world differently. To accept that different is not less. To embrace change all around us as a good thing instead of a moment of sheer panic.

I wish someone would tell me it will all work out. I wish I had a shoulder to turn to when the scary things run through my mind. So I understand not saying things out loud as a protective measure. But at the same time, I wish I could throw a pity party that other people would come to and pat me on the shoulder.

Many paths to our destinations. None are inherently wrong. Some are tougher than others. Sometimes we need a push to get moving. In the end, we will all end up just where we are meant to be.

Why I’m angry

I’ve read a few blog posts recently as well as some social media that indicates a vast majority of people still struggle with disability acceptance. These range from posts about the 25th anniversary of the signing of the Americans with Disabilities Act to one post about how awesome a certain Autism organization presents itself. Many of these posts make me angry.

You need to understand I’m not a “person with a disability.” You cannot separate the things that are different about me from my core characteristics. I am the sum of everything that has happened to me. All of my being is wrapped up in a tapestry that you can’t just pull a thread out of and it will still be a tapestry. Thus, I get angry at many posts I consider ignorant.

Let’s start with “disability” and what it means to me. Yep, I’m physically disabled. Got the doctor’s notes and everything. Does that mean I should be tossed aside as useless? I think not. I work a part-time job, volunteer and have an adult family to tend. I pay taxes. I give back to my community. I don’t consider those “worthless.”

I’m considered mentally disabled as well. As an Autistic, I face challenges others do not. However, I hold to the label of Asperger’s and not the newer “ASD” label. My main issues are with social cues, not intellectual difficulties. I’m apparently sarcastic and dry witted. Traits not appreciated by many. I’m frustrated by those who insist Autism  needs a cure. WTH! The last time people wanted to “cure” my type of disorder, several million people were sent to their deaths in gas chambers.

Yes, I’m angry. Autism $peaks has marketed itself to the point where people think it’s a “good” organization, much like the Susan Komen organization. Both are very public faces of diseases. Both have been shunned publicly by the very people they claim to serve. A$ does not speak for Autistics. They promote eugenics, physical and verbal abuse in addition to painting a picture of despair. Bottom line, you “light it up blue” and you are saying Autistics don’t deserve to exist.

There are so many places you can learn about Autism. Support locally to make sure your time and treasure actually help people and not just generate hype. There is no doubt that Autistics need your help. We need your help accepting our differences. We need your help funding respite care for families. We need your help to ensure families, regardless of economic means, have access to therapies. We need you to understand that different does not mean less.

Can you help?

Deficits

DEFICIT

(1) :  deficiency in amount or quality <a deficit in rainfall>
(2) :  a lack or impairment in a functional capacity <cognitive deficits> <a hearing deficit>
 (3) :  disadvantage <scored two runs to overcome a 2–1 deficit>

 

The Autism diagnosis is based on deficit, or lack, of certain skill. The focus is immediately on what cannot be seen or done. I’ve written several time on “less than” as the way society sees people with disabilities. Is it no surprise that the perception becomes reality when even those diagnosing the disorder start from a place where “lacking” is the basis for diagnosis?

I’ll tell you that I have certain skills that are not as strong as they could be. I have a very strong sense of right and wrong, which leads to heated arguments on a regular basis. I do sense grey areas, but frequently disregard grey for black and white. I am perceived as socially adept, although the reality is I am fascinated by behavior and am constantly watching people so I know how to respond. I have high anxiety around “normal” parts of life because I don’t understand how something will work out. Basically, I’m a tangle of social issues, which just so happens to be the basis of my diagnosis.

I’m not a savant in any area. I am verbal and able to communicate, unless I’m confused. Then my words don’t make sense and frustrate everyone including me. I’m educated, having attended college and pursued advanced degrees. I’m a professional. I hold a job. Fortunately, my job doesn’t demand that I interact with adults so much. I’m just not cut out for the games and machinations that seem to plague many workplaces.

I am a daughter, wife, mother and sister. I’m a mentor, a teacher and a coach. I am an active member of my community. I don’t sit behind my computer and watch the world go by. Well, most of the time at least.

We all have deficiencies. Some just come with a label. Some are labels slapped on us by society. Some we accept ourselves. If you look closely at your life, you may just find some areas where you come up short.

Are you deficient? Probably so.

Familiarity Breeds Contempt

It’s an old saying that dates back to the early 14th century. I figure if something has persisted that long, there is probably a kernel of truth buried in the verbiage. People probably felt this way for centuries prior to putting the words on paper.

In short, knowing someone/ something too well leads you to disdain of said person or thing. It’s not just disdain, it’s stronger…bordering on intense dislike. I go through cycles with my life and activities that almost always end up at this point. It’s nothing personal. I used to think it was boredom on my behalf, but it feels like more than that.

For example…my medical doctors. A few months back, things seems to be stabilizing. We got into a groove in our relationship that I felt was actually a good thing. Then, an issue arose. I saw things one way, the docs saw it another. Because we had slipped into this comfortable rut, we’ve ended up not liking each other very much when opinions differ. I am on the short end of this particular stick since the docs are the gatekeepers. I hold just a bit (snort) of contemptuous feelings for the group right now. It’s only a matter of time until the issue gets sorted out on its own. It will be interesting to see which way the cookie crumbles in this case.

I also feel this way about one of my jobs. It’s been getting increasingly awkward for a week now, with my supervisor not catching on that there are boundaries being crossed. They’re not red flag boundaries, just some of my personal ones. Yes, yes….I could say something straightforward and hope it changes the work relationship. Instead, I’ve used sarcasm. Note, the supervisor in question is taking my sarcasm as humor instead of the warnings I intend. Today, the supervisor crossed the boundary. It’s small to those who don’t know me. Again, not a red flag boundary. Rather, it’s one where I can see an outcome that is very likely and the supervisor is choosing to open a can of worms instead. Yes, I should just say something. I just don’t feel like it’s my place.

Thus, contempt. I know too much at this point. I know my supervisor’s skills and abilities very well. I know my supervisor’s strengths and weaknesses. I know how my supervisor responds to situations. Unfortunately, part of what I do internally is watch people and file away information about them. I can’t help it. It is part of how I cope with people. Patterns of behavior are comforting for me to understand. I can deal with shifts in behavior much easier when I understand where the behavior stems from.

So, I left. I just decided it was better to leave instead of expressing my thoughts. I’m fairly certain the supervisor would have figure out I did not respect the decisions that were made. Fight or flight and I chose flight. Maybe a day or two away will allow me to reenergize and prepare to deal with this situation.

How many times have you walked away and not said anything? Is this a luxury I have because of the terms of my employment? Would I do the same thing in a different work environment? Well, the answer to the last one is yes as I have done this as recently as six months ago.

I’d say this was an Autism piece of me. Seeing patterns and mentally arranging them is something I’ve done for years. Losing patience when people can’t see “my” patterns is also something I’ve done for as long as I remember. Feeling contempt is, unfortunately, not new either. It’s not a “superiority” thing. It feels more like watching one of those videos where someone is doing something you know is not smart. You can see they are going to have a spectacular wipeout. You just know. And then when they do, you laugh anyway.

 

Bleh

It’s summer here. By media accounts, I should be thrilled with the sunny weather and opportunities to go outdoors. I should be wearing flip-flops and shorts. Or sundresses. My family should be having picnics and throwing water balloons. Oh, the picture perfect media portrayal of Americana.

Instead, I’m staying indoors because the sunlight gives me migraines. The “warmth” causes my body to rebel. If I wore flip-flops, I’d be face down on the ground in no time. Dresses? I avoid them. Family? Working too hard to have a leisurely picnic.

So, my mood is bleh. It’s not melancholy, for that would imply some degree of sadness. It’s not depressed. It’s just bleh,

Not living up to the expectations set by the media isn’t such an awful thing. Honestly, I think they just want me to pursue their dream down to my last penny. Accepting that the hype doesn’t equal reality is a major step toward believing your life is just fine. When your life revolves around needing to fit someone else’s portrayal, you lose the chance to make your own memories.

So, bleh it is. My own bleh, not someone else’s. And that’s okay.

 

Courage

That one word evokes some strong feelings. It makes us think about things. While most people don’t consider it a judgment, they use the word to judge others. Questions like “Exactly how is that courageous?” have people second guessing themselves.

I think about the people in my life. Courage is parents sitting beside their daughter who was in a head on collision with a semi-truck, not knowing what each day will bring. Courage can be found amongst my friends living with rare, disabling diseases including gastroparesis and Ehler-Danlos Syndrome. Courage is walking out of a doctor’s office and facing the world even though you’ve been dealt another blow.

Courage is with those taking one minute of life at a time as the learn to live with mental illness. For too long, society has hidden how much courage it takes to keep moving forward when every fiber of your being is screaming “enough!” Courage is talking about your own mental illness so you can help others. Courage is standing with those who are living with mental illness and supporting their journey. https://hpwritesblogs.wordpress.com/2015/06/18/www-thesemicolonproject-com/

Courage is being there for the youth in your life. It is 3AM wake up calls because a diabetic monitor went off. It is taking in a  youth who needs guidance, yet is unable to turn anywhere but to you. Courage is raising a child to see that they are priceless, even when others have written them off. Courage is accepting that different is not less. Courage is biting back the tears as your child is bullied yet again. Courage is building a helping village, brick by brick, knowing that not everyone will understand.

Courage is picking yourself up after being knocked over. It is seeing your own value and not allowing others to take that from you. Courage is continuing to improve yourself, even when you feel like you are as good as you can possibly get. Courage is recognizing that change is part of growth, no matter how painful.

Courage is helping your fellow humans reach their potential. It is being sensitive to the fact that different is not less. It is understanding that words hurt and should be used with care. Courage is being willing to help instead of shying away. Courage is compassion.

Let courage take root in your life. See the possibilities of being courageous. Consider all that you personally are living with and recognize that others have things going on in their lives to. Reach out. Be courageous and step out of your comfort zone. I think you will be amazed at what you discover.

Aloof

I few days ago, someone told me I was disconnected from a certain situation. I’ve spent some time (as usual) pondering this and why it was said. And I’ve contemplated the past few months and a few other situations where my reaction was apparently not what was expected. Guess what? You could call me aloof.

That doesn’t mean I don’t care. It doesn’t mean I don’t have feelings. It doesn’t mean I’m unaware of a situation.

It does mean that I express my feelings differently than others. It means what you see may not be what I feel. Think about the saying of still waters run deep.

And please, stop trying to fit me into your perspective. It’s yours and you are welcome to it. My perspective is just as valid and just as meaningful. We just see things differently.

Aloof is a nifty word. Cool, casual, unruffled. Just don’t mistake it for disconnected.