Friday, August 18, 2017

The Terrible [early] Teens? Eeeek!

Parents, listen up. I have a confession of sorts to tell you. It's like a little secret that isn't widely discussed much, but maybe it should be. Kids between the ages of 12-15 are generally butts. There. I said it.

Now, let me back it up, and explain it. When my first child was around 13 and in middle school I was talking to another mom about her behavior. This mom had 3 kids all older than mine. She told me that no one likes their child while they're in middle school, but after that awkward growth spurt those same little jerks turn into great people. She talked of how her, and her daughter were best friends now, but she couldn't stand her during that time. At the time, I thought that was a harsh thing to say. Now that my last one is about to turn 14, I can tell you, it's so true. Autism, or not, verbal or not, it makes no difference. The hormones get to them all, and change them into moody messes that want to do everything on their own, but also want to jump in bed with you still when there's a thunderstorm. They don't know HOW to feel. Their hormones are out of control, and they feel that way, too. It reminds me a lot of the terrible twos. It will likely wear you out, and use more patience than you knew you even had. You'll get through it, though. I promise that one day they'll return back to a nicer, calmer, more mature kid. Most of all, know that it's not anything that you did. They all act up around this time, It's developmentally normal. It's not about a failure on your part to guide them correctly. I know I certainly felt that way the first time around, and a little the second time, too. This time, I KNOW it's not personal.

Monday, July 31, 2017

Looking Past Scary Beginnings

I have been thinking all day about some conversations that I have had with friends recently, especially ones concerning my last post about advocacy. Maybe this is not the best day to do a lot of deep thinking, and even less so writing about how I'm changing things up due to the fact that I am battling a case of strep. Maybe my extra sensitive feelings are serving me well in giving me an extra push that I needed, I don't know. I'm going with it, though.

I've had an achy feeling lately. Not one that originates with my physical body, but achy on another level. When I say lately, I mean the feeling started nagging at me probably 2 years ago, or so, and has gotten stronger, more frequent. What began as a feeling of restlessness has exploded inside my being as a feeling of persistently being out of place. A wrong place, wrong time feeling. I'm no stranger to feeling misunderstood, or out of place. This has been a lifelong feeling on my part, but what I'm talking about is different. This is a feeling of reliving something that has long past, but that I can't let go of. A piece of life that has long since gone.

The only issue is that I was unaware of what this meant. What part of life had I outgrown?

I am old enough now that this isn't the first time, and probably not the last time this has happened. Little things turn into big frustrations. My nerves get on end, and life in general seems rather forced instead of a free flowing of experiences. Plainly put, I feel discontent.

Feeling discontent is a weird place to be. It's not depression, or sadness. It's not any emotion that is easily summed up in a word, or two. It's just a feeling of being .... not fulfilled, of something missing. In order for me to remedy this feeling I have to find the root of my discontentment, and address it, even if it means facing harsh truths, and scary beginnings.

As I poured over all the things that make up my days I found that one seemed to stick out more than any as the likely culprit, and that activity is advocacy. I feel like the advocacy scene in general has changed. I feel like I have changed. I feel like so much has changed in all sorts of ways that I've outgrown it, and it's outgrown me. I'm burnt out.

But, then this is a huge part of who I am, isn't it? I mean who am I if not an activist?

Sunday, July 30, 2017

Civil Rights and Pitchforks

When I was growing up one of the virtues that was taught was the saying, "If you can't say something nice, don't say anything at all." As far as I know, this is still often taught to children as a guideline to behavior, yet from what I have witnessed of people lately few adults are following this advice themselves, especially when it comes to advocacy efforts.

Let me preface this by saying that I am aware that there is often a need to be outspoken, bold in order to be heard. Sometimes we have to be less than nice to take some of our power back, because that's how power imbalances work. No one group holding the most power, and privilege is going to relinquish it in a passive manner, because the oppressed is asking nicely. That's not how it works.

However, when did being a snarky, condescending, foul mouthed, angry person spitting sassy comebacks at everyone whom you cross paths with become what we call advocacy? When did answering every question from others from different groups with an air of, "I'd explain this to you, but you're just to stupid to understand it."

Saturday, July 22, 2017

#Autism and Suffering

"But, *my* child does suffer from autism...."

Being in the autism community for over 10 years I have heard this sentence a lot. Every so often a parent of an autistic child will proclaim that their child really does indeed suffer from the condition of autism. Sometimes they'll remark how it isn't a gift for some people, like their child. they add, giving adult autistic advocates the side eye. They feel bold, like they just said something that was important. An untold truth, if you will. This remark will often beget throes of relieved parents chiming in with the 'me toos'. The numbers may speak of solidarity on the side of parents, but the sound of silence on the child's part is deafening to me. I want to explore this silence.

Friday, June 16, 2017

Are You an Empty Cup?

"Get your what?" My husband replied to me from around the corner as I dashed to the bathroom.

"My polish. I bought some fingernail polish last time I was shopping so I could paint my toenails." I said, as I reappeared from around the corner holding a shiny, new bottle of muted dark pink nail polish up to eye level.

It seemed like it took several seconds for him to quite gather, and make sense of what I just said. "Oh," he replied surprised, but approving.

I am not sure the last time I painted my finger, or toenails. It's been maybe a couple of years. It's been probably a good 18 since I've done it on any kind of regular basis. It's not something that I have found high priority in the last several years as a busy mom raising kids with different ranges of needs.

I have found lately that in the last 19 years of being a mother balancing everything has left me unbalanced.

In recent dreams I find a recurrent theme of forgetting I have a baby girl, and then trying to bring her back to health by feeding, and caring for her. Almost always in these dreams I have the best of intentions throughout, as I try to tend to everyone's needs. It's not that I am lazy, or sinister in my forgetting. I try, and I try hard not to forget about this baby. Often when I do finally get to her, I end up feeding her the wrong things. I forget the food, or the milk. I do too much of one, and little of the other. Sometimes I run out of formula, and have to sub something else less healthy.

I am finding these dreams to be symbolic of my need to care for myself properly. The good news is that I am recognizing this need, and trying to remedy the situation. The bad news is that I am not quite proficient at it yet.

What does it mean to care for ourselves, though?

Saturday, June 10, 2017

Some People are Just Jerks

Something happened recently that caused me to rethink a huge chunk of my philosophy towards human behavior.  It wasn't the event that is important but rather what I took away from it.

I used to believe that 99% of people were inherently good. I thought that there was only the 1% of humans that were so bad it was thorough to their core. I still believe that, to a point. I do think that most people in general possess a conscience that will kick in during serious situation. Situations like murder, rape, and robbery, ect... In general most of us instinctively know those things are wrong, and it would be hard for anyone to even manipulate us into those actions.

But, what about less serious actions?

This is where it gets fuzzy.

Wednesday, May 24, 2017

Trying to Get Away from Myself

Here the last week or two I have been a bit melancholy. It's a depression that has me in limbo of almost okay, but then not quite. The blah feeling that waxes and wanes as the day progresses. I highly suspect that it's been induced by the withdraw of  meds I was taking for migraine prevention. As my body struggled to readjust once again I am found myself slowly sinking into a place of apathy, and sadness.

My brain reacts as I feel it should. I start questioning everything. I begin to feel as if something is perhaps missing, and I need to find it. It's a logic puzzle to my brain. "Something is not quite right. Something is wrong!", it says. My brain sounds the alarms.

The ways in which I react are often not useful.

I often begin to search for ways to solve the problem. If there's smoke, there has to be a fire. Right? So, I begin my futile, but busy quest to find out what is the root of this sweeping mood shift. I make mental checklists of items that could be contributing to my feelings of despair, and frustration.

Could it be that I'm not getting enough sleep?
Maybe I'm not eating well enough.
Am I in need of more alone time?
Do I need to get out more?
Stay in more?
Exercise more?
Exercise less?
Do I need to set new goals, so that I am not so restless?
New friends?
Old friends?
Less sugar?
Less caffeine?
Is the answer more time with nature?
More yoga?
Too much technology?

The list is exhausting, and long. I could go on forever, but there's no point, because the answer isn't in my habits. It's in my brain.

As I said earlier, I suspect the reason behind this unstable mood of mine is the medication change. Meaning there is no way out, but through it. But, my brain doesn't want to hear that. It's natural for us to jump to changing things when we're uncomfortable. It's how the physical world works, and how the human race has flourished. We problem solve. When something feels wrong, or off we spring into action to shift this feeling to one that feels better.

Except emotions, and states of  being do not work like that.

Friday, May 12, 2017

Managing Life with Migraines

Today was another doctor's appointment for me, in yet what has become a long, and sometimes desperate search for relief from the chronic migraines in which I suffer.

This time I went in 90% with my mind made up that I was finished with preventative meds. I wanted to remain steadfast in this stance, so I would not be persuaded in the moment, only to regret my decision on the way home as I often do. Still, I left the door cracked open so I could listen to reason, with a healthy mind frame of skepticism. I wanted to express that the current preventative med that I am taking is not helping, and the side effects were outweighing the benefits at this point, namely weight gain (which is a very touchy subject for me to begin with) and stomach pains.

And, so I did. I explained how I feel like I can't separate the side effects from my illness(s) at this point. There's no way to differentiate what is where, and I'm tired of putting my body on this roller coaster with only a small amount of relief. I asked for a pain reliever, and a break from everything else related to migraines. Long term, this may not be a good option. I'm aware of this. I just feel it is for where I am now. I can always take the doctor up on the offer for another med, or a referral to a neurologist later on.

I'm sure that there are loads of people that are in the same situation as I find myself in right now, chronically ill, and feeling like they're out of options for relief, or even a shot at living a life that they once knew. It's hard to accept

Tuesday, April 4, 2017

Body Image and ED-From an autistic perspective

Last night I participated in a Twitter chat about eating disorders, body image issues, and how they affect me as an autistic woman. I didn't find Twitter to be as accommodating to my long winded style of writing as I'd have liked. I thought that maybe it might be a good idea to do a blog entry on this topic, as it does seem to be a popular one that needs addressed.

After the chat I had so many thoughts swirling around in my brain. I am not sure how to organize them here to share without this entry turning into a small novel! The questions, and answers brought forth memories long forgotten. There is something about looking back on certain things in one's life as an older adult, and having a different POV, and appreciation of things that only time, and maturity can facilitate. Some things shifted into place, while others still remain tangled within my odd personality of contradictions.

As a young child I do recall not having a very positive relationship with food. How much this contributed to my body image issues, I don't know. I know it didn't help. I was always a very thin, underweight kid. There were always more interesting things for me to do than eat. I don't think I find the same enjoyment out of eating as other people do. Most of the time I would eat just enough to make the annoying hungry feeling go away, but not enough to be very full.

I had a certain way I would eat, as well. Things on my plate could not be touching, and certain textures were not okay with me. I would eat only one thing on my plate at a time.

I don't think I can stress this enough to any, and all parents

Friday, March 24, 2017

Living with Mesothelioma – A Hopeful Story



Living with Mesothelioma – A Hopeful Story 


Mesothelioma is a pretty devastating diagnosis to get. The statistics are grim, with very people ever being cured of this kind of cancer. I got my diagnosis, like many do, later in life. I am over 50 now and living with mesothelioma. Although there is not much chance of being cured, I am fortunate enough to benefit from treatments that help me live my life in spite of the disease, and I get to tell people about my story and make a difference.