Category Archives: Uncategorized

Explain

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How can I try to explain, when I do he turns away again.
It’s always been the same, same old story.
From the moment I could talk I was ordered to listen.
Now there’s a way and I know that I have to go away.
I know I have to go.~ Cat Stevens

In the song, the artist is having a conversation between a father and son. Here, I want you to think about the words in a different context. It’s no secret I have multiple medical issues. I recently had a “minor” procedure that, now entering week 3, has wreaked havoc with my life.  Combined with some medication changes, I literally have no life right now.

So what do those words mean? I’m tired of explaining myself. It’s hard enough when I feel well. When I don’t, well, it sucks to have to keep repeating myself. Over and over to different doctors because for some reason, they can’t read notes. They refuse to listen to me. They refuse to listen to each other. It’s like shouting to the vast oceans.

Part of this is my Autism. I just can’t communicate my needs correctly all the time. I assume people know what I need/want and they don’t. They no more know how to read minds than I do. I think they hear me, but they don’t really get what I’m saying. Honestly, I speak fluent English as do  most of my medical providers. Somehow, it seems to come out gibberish.

The worst part is that most doctors don’t seem to hear me. I’m told to listen and not question. Right now, I have refused treatment for one disease because of my doctors. Honestly, it’s frustrating all involved parties. But, I felt I had no choice. There was a lot of demand placed on me with no expectation that they listen. My words fell on deaf ears. So, I refuse. Childish? Absolutely. Effective? Quite possibly since outcomes drive evaluations.

I’ve also been denied treatment in these last few weeks. It seems that my doctors, even the ones who just met me in the ER, know more than I do. I went in for pain…it seems they somehow missed a 3mm kidney stone and are now calling it a fragment. Let’s just say that it’s significant and painful. Did I receive treatment? Not really. My blood sugar decided to go low most likely from the stress. So, they focused on that. They didn’t even check for stones and consequently figured I was just seeking drugs.

You can go in the archives to find more thoughts about seeking. In this case, I just shut down. Doctor’s seemed to be yelling at me. Demanding things. Angry voices. And I, adult and all, just shut down. I have to say, doctors have no idea how to deal with Autism. Yelling doesn’t help. It really never helps. But it’s what they do. So, we go nowhere. I don’t receive treatment, they don’t get answers.

So there is no win/win. It’s all lose/lose. The doctors can’t treat me. I shut down and can’t answer questions. One day, my wish is for compassionate physicians who aren’t “in your face” or “detached” from what they do. .Until then, I guess I’ll just be a petulant child.

 

 

21

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Sing, Sing, Sing by Benny Goodman

Middle turns 21 today. He’s into music. I found the perfect song for him….

Twenty-one seems, I don’t know, young. Exuberant. Jubilant. Excited. Snappy. And jazzy.

All the rites of passage of youth are supposed to culminate on this day. I don’t feel that way because there is so much more to life than being able to buy alcohol legally. But, Middle likes to hang out with friends and he’s a tad younger than many Graduate students, so now he can actually go listen to bands at local clubs. I’m sure that is one thing he will like.

Yes, you read that right. I’m really very proud of Middle. He’s moving through college at an advanced pace, set entirely by him. I was told 19 years ago that college wasn’t in Middle’s future.

I hope you’ve read enough of this blog to know that “can’t” “won’t” and “never” aren’t words I use. Middle went further than those pediatricians said he would. He is exceeding the expectations of many along the way who whispered “just give up.” Middle took that as a challenge…genetics and all I guess.

Middle doesn’t like me to talk much about him. I’ll just say that I’m mighty happy he didn’t listen to those who would have denied him opportunity. I’m tickled that he’s making a life for himself. We still talk, but he’s the one steering the ship now.

So, Happy Birthday to one of the most amazing young men I know.

 

 

It’s quiet

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Youngest headed off to college this week. The house is quiet. The dogs are not sure what’s going on. It’s eerie.

I can watch whatever I want on TV- not that I want to watch TV right now. Dinner? Easy to please everyone now. I’m beginning to see the usefulness of frozen food.

I hope she stays in touch. We have texts and social media now, so she doesn’t have to admit she’s calling home. I just sent her a box of things she forgot to pack. Important things like the television remote.

My wish is that she finds her calling along this path she’s chosen. We raised her the best we could and now it’s time for her to fly. Well, maybe just stray a bit from the nest  right now. Give me a few weeks….

Sync

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I was asked a question a few days ago. Keep in mind this question comes amid a health issue and quitting my job. The question seems simple on the surface. What do you want to do?

To me, it seems people are defined by what they do…their position in life determined by their job. I feel that we value our ability to “be productive” and bring home a paycheck. There is status in being employed and non-status if you don’t work. People seem to still count stay at home parent as a job, but what happens when your house is full of legal adults instead of minors?

There is no doubt my job as a parent is incomplete even though my kids are technically adults. But I can’t seem to be a stay at home parent.  I don’t fit with the parents who have school age children. I’m supposed to be DOING something now I’m an empty nester.

The person who asked me the question followed up by asking why I felt I couldn’t just be. Well, it feels weird. It seems all the people I know are working now their kids are grown. Whether it’s out of financial necessity or the pull of societal norms, people my age and in my position are working.

And I’m not. I want to work. I even applied for a few jobs this week. But, it was only half-hearted. I have between 2 and 5 medical appointments every week. I need an employer who understands disability and doesn’t penalize for needing time off. Yeah, there are so many of those now <sarcasm>. Then there is the fact that the drama that occurs in the workplace tends to cause stress which leads to medical crises for me. Even though I can work, am able to work and am highly qualified in my field, I can’t work. This sucks.

A just posted a link to a NY Times article on my personal social media page. The article talks about how the next generation is stressed by their parents “demands of success.” News flash, this article applies to all of us. Just substitute “life” for “campus” and it will make more sense. Read it here:  Suicide on Campus

So, what do I want to do. I want to get healthy again. I’m entering week three of the latest medical issue and it’s getting old. I want to work, so I’ll probably go back to my volunteer job at some point. I really don’t know how to just be. I guess I should start thinking about that.

The first step is probably giving up the feelings of guilt that go with not having a paid job. I know I’m not the first person to have those feelings. I’m sure I won’t be the last. You know what would be great?

Your challenge: Reach out to someone who may be trying to adjust to a “new normal.” Let go of your notions of “value” and help someone just “be.” It’s something we will all face at some point in time.

To Every Season

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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.

Deficits

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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

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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

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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.

 

Aloof

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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.

Semantics

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There’s a discussion going on about how a person should be addressed in this age of fluid labeling. Gone are the labels of Ms. Mrs. and Mr. How old-fashioned!

Now I have to make sure that I’m not offending someone by referring to “that girl” or “this boy.” I though I could go with “child” but apparently some people prefer “offspring” and thus, I am offending that group.

Heaven forbid I use clothing as a way to describe a person. The “girl” with the pink shirt might prefer to be called “individual.” The “boy” in the pink shirt might not be happy with “boy” as a descriptor either. He seems to prefer “man.”

In the Autism (there I go again!) community, people are both claiming and denying the labels. Personally, I go by Autistic. One of my children prefers Aspie. The other prefers no one knows. Then there are the “people with Autism” who are all in with the person first language. Me, well, I’ve been a person longer than I have identified with Autism.  The order of your speech doesn’t affect my life.

But your attitude does. How you treat me does. How you speak with me does. Your words tell me how you feel/believe. Be kind.

Ask me if you don’t know and are worried about offending me. I’ll tell you. Not everyone is as open about their lives, so some may consider your question intrusive. I think the majority will be grateful you asked.