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    EVILPASSION   7,338
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An on-and-off pattern

Thursday, November 08, 2012

Clearly there's an on-and-off pattern in my behavior! It seems that Spark People is the first thing to go when I'm under stress, even though I'm literally desk-tied. You'd think that with being forced to be on the computer all day, Spark People would be my friend. Instead, it looms over me like a slightly disapproving Governess, a Governess I don't listen to.

I could go off for ages about what autism is doing to our lives, and how stressful autism is. It's like having a family member who not only doesn't speak your language, they don't want you to learn theirs and they have no interest in learning yours. However, they DO want you to understand them and give them what they want, preferably NOW. I'm not sure through what mechanism this miracle is supposed to occur, but it's not occurring at my house. General disharmony and discord is, however.

The other big stresser has been the election. Never in a million years did I think I could EVER feel this passionately about an election, even back in 1976 when I was willing to wear a dress in 3 degree weather to go to Jay Rockefeller's inauguration as governor of West Virginia. No, this surpasses even that furor, and left me so upset and so worn out when the count was over and my candidate was down that i woke up today with a migraine that expressed it all.

Well, it has only been through the support of my friends, including Spark friends, that I've made it through these last two weeks. I sure thank you, because every time I think it can't get any rougher, it DOES. I've gained back a bunch of pounds eating from nerves and now have that to deal with. It seems a never ending on-off up-down cycle that I truly long to break.

~~That is all. ~~ back to work now. emoticon
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EVILPASSION 11/8/2012 9:34PM

    SherryGayl, my daughter APPEARS to communicate very well. She hides her disability to the point that people are stunned when she does something "autistic" or has a meltdown......they don't realize that in her case, the meaning behind the words is different than what it would be to the rest of us. So she may be holding what appears to be a very intelligent conversation, but what she is getting out of it is not what we are saying....if that makes sense? And vice versa. I have seen that happen over, and over, and over.

She was originally diagnosed PDD-NOS but as she got older and started talking they switched it to Asperger's. She has so many issues, though, that she generally functions much lower down the spectrum. She has days when she can go out with kids her age and be okay, and days where I won't let her watch tv unsupervised or sit and color alone. This makes it very, very difficult to "have a life".

Thank you so much for your support. It helps!

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SHERRYGAYL 11/8/2012 2:37PM

    Oh, I know what you mean about the disapproving governess! I have a couple of those myself! It's annoying, isn't it? I know I'm supposed to do this and it would be better for my family and myself if I did, but *stamps feet and screws up face* "I DON'T WANNA!"

When it comes to taking care of someone with autism, every person is different. My 16yo son has Asperger's Syndrome. He can be a lot to handle and is definitely beyond arrogant but he's not disabled. My 9yo girl, on the other hand, is disabled but only moderately, not severely. Her diagnosis is PDD-NOS. Things got infinitely better for me the summer after she turned 5 and she started talking. It became easier for me to identify her triggers and work to minimize them. Meltdowns went from daily to weekly to monthly to rarely. Is your family member able to communicate in some way? Verbally or other noises, typing, gesturing or sign, tablet? Communication is so important. Even before my girl started speaking, she and I were able to communicate to an extent. Nobody else could understand her but I was able to learn the pattern of her noises and it WAS a language. I can only compare it to "twin speak". My being able to understand her was the key to minimizing meltdowns. They still happen on occasion but I can usually see them coming on and change the circumstances.

As for the election, there's nothing to be done now. Everyone, whether they're happy or not, needs to take a deep breath, a Tylenol, a glass of wine, and a nap! It's been a terrible year for our country. We've become so polarized and so much negativity and hatred has been flying for so long. I really hope we can come together now and stop being so nasty! I even stayed off the internet for a good part of the summer because I just couldn't take it anymore.

I hope you can find what you need to help yourself be healthy and fit, not just physically but also emotionally. I also hope you can come up with some way of communicating with your family member. (I highly recommend "Carly's Voice" by Arthur and Carly Fleischmann). As challenging as this journey back to health is, YOU are worth the effort!

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SLIMINDOWN31 11/8/2012 1:31AM

    You really have a challenge w/autistic family member. It' demanding emotionally and physically. It's also hard to deal w/ disappointment w/ things we feel so passionately about. Having said that, I think you have to make Sparks like brushing your teeth. You probably don't go a day w/out brushing and you need to make Sparks a non-negotiable thing you do everyday.
You are a good writer and enjoy your blog.

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