Revealing My Scars

I had a strange dream the other night. It was the kind where it follows me with odd da ja vue feelings for days. It begs to be taken apart, and analyzed. Some dreams are really just wisps of all that we accumulate during the day being let out in our subconscious at night while we sleep like an air release valve. They don't mean much at all. Then there are the kind that are a little more serious than that. When you recall bits, and pieces of these dreams there's emotion attached. It's not just the run of the mill dump dream. These types of dreams have a message to decipher, and usually a solution to a hidden issue you might have been avoiding.

In this particular dream I had found out from a doctor that I had cancer. I eventually ended up speaking to a doctor, and a team of scientists about my options for treatment. The doctor told me that I had three options. I could:

1. Choose to try to manage it with diet, and exercise, and hope it heals itself. The doctor said that this was not a recommended choice, because the cancer was very toxic, and would likely attach itself to other organs infecting other parts of my body with sickness.

2. I could choose to replace that part of my body with healthy skin. The new skin would heal the cancer, and the chances of full recovery were very optimal. The only drawback was that the skin had to come from my face. A fairly large portion of my face. The procedure was only offered in another country, so I would have to go there to get it. She explained to me that this was the best option with little chance for error.

3. I could choose chemotherapy, but the doctor noted that this option would be overkill. She didn't recommend it, because the chemo kills the healthy cells with the bad ones. I would endure pain, and sickness as well as possible permanent damage that would be irreversible.

I decided to go with the chemo. I said that would be the best option for me. It was the only one I could afford. The doctor again reminded me of her recommendations. She asked me why I could not do number two, since that was the best choice medically. I asked if the skin would scar, and she said it might. I broke down in tears explaining to her that I had a scaring disorder that makes my scars turn into bubbles, and look much worse than most people's scars. I also could never afford to go to another country. How could I choose number two when it would leave marks on my face that everyone will see?" I sobbed.

Finding Purpose in Being Still

Sometimes there is this feeling that hits me between the eyes. It's one that is hard to describe. It's not quite jealousy, or depression, or well.... anything I can label easily. If you can't tell this is going  to be another one of those entries that kind of end up falling from my fingers as quickly as the thoughts pop into my head with little direction as I explore what it is that I am feeling. One of the ways I discover myself best is through freestyle writing.

This feeling surfaces when I see others doing things that I think are admirable. Things that contribute to the greater good of society, or at least seem to have a lasting effect on the world. It causes me to think about what I contribute to the world, and as I often do when thinking of myself I always feel like I come up short. I begin to question where I am in my life, and where I am headed.

Sometimes, I am perfectly content with taking care of my family, and tending to their needs. Other times I feel like I am shut off from the world, and stagnating. I question if being a stay at home mom, and caregiver is what I want. If it's what is best. If it is contributing to the world in a meaningful way.

These feelings come with a sense of disconnect from society. Not in a lonely type of way so much as a cut off, and isolated type of way. Like I am not part of anything bigger than my own little world.

Ouch! That Hurt My Ego!

In my last post I talked about not only fearing, but expecting rejection, and another recent post I spoke about feeling almost depressed, and needing a break.

I think I see a pattern here.

In sharp contrast to me almost rock solid confidence in the recent post about letting go of preconceived notions of limits post I wrote just a few weeks ago I see a decline in mood. I see a decline in energy, which shakes my confidence up, leaving me feeling like maybe I don't got this.

I'm noting my ego is easily bruised by things that I usually would just let slide. I'm sensitive. My physical body is ill. My stomach is in knots,

What If I Can?- letting go of the belief that I am limited

There are events that occur in our lives that change our path to something radically different in just a few minutes, or hours.  Last month, one of those life changing events happened to my family.

When Beans came home from school hurt on the 10th of last month my journey as a mother took a sharp turn.  I pulled everything to a halt, as I searched for answers as to what happened, and what I can do to help Beans get the education he has a right to receive.  I didn't count on the odds being stacked against us. I didn't anticipate so much hostility from the people that are supposed to educate my child, and have his best interests at heart. The shocking amount of covering up for each other, and adversarial nature of all involved was a life lesson I wish I never got.

As my biggest fears were realized in this situation I realized something else. I realized that my biggest, most tallest fear was that I was incapable. The way in which I underestimated who I am, and what I can do is by far my biggest weakness, and my biggest fear producer.

I realized that in this moment of adversity I could fight it, and get stuck on the part where we are the victim, or I could move forward on this path that I have been suddenly thrust upon.  I began to see the new situation, and the new found path as a journey full of opportunity, borne of unfortunate circumstance.

The Next Chapter- #autism and #injustice

If you're unfamiliar with the entire story you can get up to speed here  and  here .

I'm sitting in a blissfully quiet house sipping coffee, contemplating my day, my week, and what to do next after a devastating outcome to what appears to be the final meeting with Bean's special ed provider at school.

I was not able to persuade them to allow Beans to go to another school. They stated it violates Least Restrictive Environment, due to the other structured learning room being further away than the one he was attending. I know that there will be 20 comments about how I can fight that, but their wording, and their reasoning doesn't have to make sense. I had 2 of the best advocates in my entire state helping me through this. If there was a way to fight effectively against our special ed coop they would have done so. If there was words to use, and ways to fight that wouldn't be wasting my time, and money they'd have jumped on that opportunity. The fact is, our local special ed coop is run pretty much like our government. We all know they're not doing things right by the people, but there isn't much we can do. We can take it to the courts, where their friends, and acquaintances work, and there is rarely ever a judgment in the parent's favor. Government agencies rarely like to step on the toes of other agencies.

With that being said, I am of course going to go forth with reporting the misconduct of the whole situation to

I Found My Courage

After some silent time of contemplation, I am back. 

During that time I thought about what is happening in my life right now, and what it means. The simple fact is, I am a natural born writer, and thinker, but not one that likes spotlights, and controversy.  I like to share, but from a quiet corner. I know that many of have urged me to go to the media with this latest awful situation with Beans, but I have to say that is my last resort, because it is so far out there in my comfort zone that I would literally have to left with no other options, besides defeat. To be honest, I'd almost rather accept defeat than to be on TV talking about such a high conflict situation that is going to bring fire down onto my family.

I don't handle high conflict situations well. What else that I don't handle well is situations where there is a very serious social injustice.  So, I feel that in this case, I am dealing with it whether I want to or not. It's on my doorstep, and isn't going anywhere.I can buck up, and stand my ground, or cower. The consequences for standing up will be harsh. I will be subjected to scrutiny, and I will lose friends, and alliances. Making noise, and being the proverbial whistle blower is not an easy task to carry through.

I thought about all these things the last couple days. I gathered up all of my strength to make the decision to carry on. I have made note of the close friends, and family I thought I had that have not been supportive. I make no apologies to the people that want to get their panties in a bunch when I don't take their advice, or ask them politely not to do something on my personal facebook page. They want to think of only themselves, then that is their right to be selfish, and petty. Fuck them. I won't let them bring me down any longer.

So, I am back. Rested, and ready to go forward, even in the face of adversity. I have to stand up for what is right for Beans, and for all the other kids that this situation has, or will have happened to.


"Human progress is neither automatic nor inevitable... Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.
Martin Luther King, Jr."

#Autism Mom Mcjudgypants

This is one of those posts. If you're a writer you know which kind I mean. Those posts where you begin, and erase, and begin again. You feel the words, but they remain elusive, just out of reach..... You know what you want to say, but can never manage to really convey it. The words you write don't do your thoughts justice, so you erase them, and stare at a blank page, and blinking cursor, until it's time to do something else. This has gone on for months with this post.

I think I have touched on the issue quite a bit about parenting,  kindness, and what we can gain from not being so judgmental. I talk about it quite a bit on my page, too. I know it's not a novel concept, yet I want to bring this topic up again in the context of special needs parents speaking to other special needs parents. (Sorry, I don't use person first language).

What does this interaction usually look like?-You may ask.

Well, it usually goes something like this:

Scenario One:
Usually, a topic is brought up by parent 1. Parent 1 may be asking for help, or may just have mentioned a certain topic of discussion, but either way parent 2 has heard, and has some advice to offer. They offer it, even if it's completely not useful to parent 1. If they are pushy, they will insist that it works, and ask a bunch of questions about why it won't work. Now, this is where I get flustered. Usually, I can just thank the advice giver, and be on my way, but if they are insistent, then that is much harder. I am not good with being evasive. I always respond with long detailed answers that will usually make parent 2 try to come up with reasons why their way can work despite all of those things.

With this scenario I feel kind of defensive, and almost like I am being attacked. I feel like it is obvious from what they are telling me that my child's autism is not the same as their child's.

Bigotry and #Autism Advocacy- The (undefined) line we all think we avoid crossing

If you follow me on my page, or on this blog you will know that I am passionate about autism, civil rights, and just plain advocating for the equality for all, because to me, everyone matters. I tend to limit these views to my own space, because I try to not go around imposing my opinions on others. I am low drama, because  my brain doesn't really understand it very well. I freely admit this is a limitation that Asperger's has enabled within me. It's not necessarily a bad one, either. My self worth is not dependent on who likes me, who agrees with me, or any kind of group collaboration. One saying that I have had since I was in my teens before I have ever knew about AS is "I do what I do, and you do what you do." What I have always meant by this is that I am who I am, and I'm okay with my choices. As long as you're doing what makes you happy, and aren't hurting anyone, your choices aren't any of my business. My ability to remain neutral is usually logically intact before, during, and after any disagreement with a person.

I do however, occasionally get into disagreements with others about various things. This isn't hard in the autism community where the atmosphere is generally tense between opposing beliefs. What I have found that is different for me than others is how I am often treated differently due to my neurological status, if said status is disclosed to the other party.  In other words, if I am known to be autistic while I debate share my thoughts, and refuse to admit that I think I am wrong I am often accused of not understanding the social situation, or the proper social protocol.  They may insinuate that I was not sufficiently stocked with the right social stories as a child, because obviously I don't understand their point of view. I was not taught manners. Or, maybe I am just too rigid in my thinking.

Growing Into Love

Like many nights, my husband came in the door tonight after 7 PM, despite leaving around 12 hours earlier.  This happens more nights than not 7 days a week. He owns his own business, and it requires backbreaking grueling labor all day, everyday.

Despite this, he comes home with a helpful attitude. always asking what he can do to help almost as soon as he comes in the door.

He comes home, understanding that my day is not always easy. His day doesn't end when he is away from work, because mine doesn't, either. We didn't arrive at this kind of give, and take relationship overnight, and I had to advocate for my needs (respectfully) plenty to get here. But, we didn't give up.  We stayed through when it was tough.  We sought marriage counseling when we needed direction.  We considered divorce many times in the last 16 years, but we stuck it through the trials, and tribulations, and let me clear- there were many life altering tribulations that we have encountered. I am glad we did.

Some ladies want diamonds,

Choices +Actions= Values A simple way to explain values to teens

I sat in the living room listening to my husband have a frank chat with our daughter last night about some of her recent behaviors last night.  I didn't intervene. I let him take the wheel.  This, I knew to be beneficial for them.  I don't always need to be the enforcer or the one who is solving the problems.  The issue is, if I am letting him solve them, I have to respect his process, which is often different than mine.  I may not have gave up that much control with Bubby, because he doesn't always understand Bubby the way I do. However, CJ is her father's daughter, for sure.  She may look like me, but she has his personality.  He understands her in ways I do not, as well as can read between the lines in ways I don't know how to.

There was a point I wanted to make, though. I did exercise all of my self control to not interject it.  I kept it 100% to myself, until now, because I will likely share this with them. lol

That point is:

There is no good or bad.  There are only choices. You make choices based at any given moment about what you value. Your values are not what you believe is right or wrong.  Your values are what you express by your actions. 

Right now, I am choosing to blog while I have lunch, instead of eating quickly and getting to my housework.  My actions are saying that, to me, in this moment , I value this blog over the 20 minutes I could be spending elsewhere.  It's not right.  It's not wrong.  It just is.  I will have consequences for that. Some positive,ie, I may help my daughter or someone else understand themselves, their choices and what matters to them most. Their are negative possible consequences,ie; I may not get everything that I need to done today.  By choosing this I am choosing those consequences.  Both the good and the bad.  Those were my choices, those are my consequences for my decisions and I am responsible for them.  We all do this everyday.  Every decision we make is a reflection of what we value and we have the ability to change more about our lives than we ever imagined if we stop and make our choices mindfully.  What we eat, what we wear, what we say, what we share, what we keep, these are all reflections of who we are and what we value. We aren't the past, or the future.  The only thing we can control is the present and we do that with our actions.

When I think of this concept part of the lyrics from The Dark Side Of The Moon-Eclipse come into my mind as an example of what I mean:

All that you touch
All that you see
All that you taste
All you feel.
All that you love
All that you hate
All you distrust
All you save.
All that you give
All that you deal
All that you buy,
beg, borrow or steal.
All you create
All you destroy
All that you do
All that you say.
All that you eat
And everyone you meet
All that you slight
And everyone you fight.
All that is now
All that is gone
All that's to come
and everything under the sun is in tune
but the sun is eclipsed by the moon.