If I Don't speak Up Who Will?

Recently I was browsing through some Facebook posts, and I stumbled across one in particular. I don't recall the exact name of the page, but I do remember that it was about children with special needs. Within the post the administrator of the page told a story about something that had happened to her at work that day. The scene depicted was one of a developmentally delayed young adult fighting with her mother, and the mother using rather harsh words to the daughter. It was portrayed in the light of equality between the two relationships, and even further that the behavior from the mother was out of frustration. Perhaps, they needed a break from each other, was the final word from the post author.

I read through the comments, and my heart began to race faster with a feeling of anger, and disbelief. The majority were so negative from the perspective of the parents. I couldn't believe that some read the same exact passage as I just did, and came away with not only a feeling that the mother's words were okay, but that they were absolutely justified.

Then there was that one. If you're like me, and let most ugly things go, until there's that one comment that just pushes you over the edge straight into a rant about how effed up that person's post is, then you know what I'm talking about. It was

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,

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.

The Hateful Letter, #Narcissism, and #Bullies

I have been asked by more than one person to do a blog post on my opinion about the letter that was anonymously written and delivered to a Canadian family last weekend. I have been reluctant to do so for a few reasons. None of which are popular with the autism community, so I tend to stay out of these conflicts. I wish I could respond like everyone else, and have an emotional reaction that outweighs my logic on these sorts of events, but I don't. I've been a lot of places in my life, and seen a lot of things. More so than the average person in respects to places that most would call unpleasant, dysfunctional, and dangerous. It's these experiences that have left me with a realistic view of people. Some people are not nice. Some are sometimes. Most are most of the time, and a small fraction of people are so dark that they are devoid of any human conscience at all.

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.

Part Of Me

There's been so much controversy here in the autism community lately about what's okay to say and who has the rights to say it.  I think that it's always best to try to not be offensive to others, but free speech is so important to me that I believe that everyone has a right to express how they feel, even if it's something I vehemently disagree with.  I still want to hear your side. I want to know what is behind those opinions, those thoughts.  Strong words usually have a story behind them. I want to hear that story and understand what has caused you to take such a strong stance.  I want to hear what makes you think that autism sucks, or why you hate it.  I want to know why some of you feel that only the parents of children with severe autism have a reason to feel angry, or the only ones that can really understand 'true' autism.

Usually, when I try to listen I get past the words to the emotions.  These emotions are strong. Sometimes, they are desperate ones. Sometimes, they are angry over lost time, money, health. Sometimes, they are sad. They are sad for what they think or even know their child endures daily. Sometimes, these emotions are from fear. Fear of who will care for their child when/if they die. Fear for the every second their child is out of their sight, because you know that in their lifetime there is a very, very, very high percentage of abuse and that teachers, carers, peers, and others will target your child due to their vulnerability.  You know that many will never understand your child.  Sometimes, it's a feeling of deep sadness, because you know your child is sad. You know how much they yearn for a friend, and to be accepted and you see that autism is what's stopping that from happening. As parents, we feel so strongly a need to take away these struggles from our kids. We want so much for them to be happy. Sometimes, the parents are just exhausted. They need sleep and they need a break.  There's so much worry that accompanies the parents of autistic children, even when they grow up. You see autism as the problem. If there were no autism, then these problems wouldn't exist.

But, autism does exist. It's a part of me and not separable from me, or my sons.  If someone gets upset about one of my autistic behaviors, I feel they are upset with me. When they hate autism, they hate a part of me. That makes it feel shameful, and bad. Like, something I need to hide away. In doing this, I have carried so much extra burden and self hate. I am now at a place in my life where I am tired of carrying it.  My neurological differences are not shameful.  They are just different. I need to put this extra weight down and relieve myself from carrying these expectations of what society says I should be.  Not because I think autism is something spectacular, but because it's part of who I am and it's not going anywhere. I may as well accept it.  I can't change it.  I can't change the fact that Beans will likely never speak, and may not even be potty trained as an adult. I can't change that Bubby may never go to sleepovers with other boys or be able to read other people's intentions. It is what it is. Some days are good. Some days aren't.  Some days coping seems to be all I can do. I always want my boys to think of themselves as someone who is loved, and deserving of the same respect everyone else is.  I want them to know that their differences may make them different, but still people of value.  I don't ever  describe the using words that are negative. I don't want them to see themselves that way and I sure as hell don't want society thinking of them that way.  Sometimes, I hate it when Beans chews up my power cord to my laptop, or pees on the floor.  I hate the situation , not the autism.  I hate when Bubby throws a fit over a routine change.  I hate the situation, not the autism.  I hate when I go to a social occasion and end up mute, not being able to join in socially, even if I want to.  I hate the situation, not my autism, and subsequently myself. 

That's my take. As I said, always happy to hear others.  Life is guaranteed to come with struggles.  Some more painful, than others. Some, seeming more unfair than others, but we all have our own. Please try to remember that when speaking to others.

Pre-meltdown

Some may be wondering about where the video I posted earlier went. I felt self conscious about it and took it down. It happened again.  It's still happening right now, as a matter of fact....

By it I mean frustrations leading to meltdown status.  I'm not yet in a meltdown, but I could so easily slip right into one, as it's close enough to taste right now.  It's that sensation of nothing be right.  How wrong it all feels. My head is hurting, my stomach is in knots, and nothing feels right.  My skin recoils from every texture, my ears feel no respite from every noise that seems to be all on max volume.  I want to run away, but have someone hug me. I want t be left alone, but talk to someone.  These are my contradictions of meltdown.  Rational thought is still present, but contained in a bubble by itself, while emotional fretting is surrounding it.  I know this is nonsensical, but it's like I can't stop it.

I don't even know when and where it began. I know I read a few things this morning that didn't sit well with me, so I tried to explain my side. I was unable to do it satisfactory, at least in a way to persuade others that my view had merit.  It snowballed from here.  It has been one of those days where everything on-line that I tried to participate in went this way.  I think a normal person would have decided it was time to pack it up for the day several hours ago and busy themselves somewhere else.  Not me. I'm not normal.  I perseverate, and I do so with vigor.  These last few days I've seen a lot of ugliness in the autism community (both from NTs and autistics). I've seen a lot of irrational behavior and assumptions that make no sense and do not fit fact.  This is not merely my view on life, but real facts.  One person's fact can easily be seen as opinion from another perspective... which I know rationally.  But, my brain can't wrap itself around such a broad concept.  My brain says, it's either one or the other.  It's black or it's white. I can't. move. on.  I'm stuck in this pool of frustration.  This frustration leads itself to criticism.  I begin to fear that maybe it's me that's wrong. My thoughts circle around this idea like this:
Maybe that person doesn't like me anymore.
I'll bet they think I'm stupid.
I probably shouldn't post/say this.
I'll bet they think I'm crazy.
I am not successful.
I don't do anything right.
People in general don't like me.
I'm not a likable person.
Maybe I ought to find something else to do with my time.
No one will miss my blog/page anyway.
They all would rather me be quiet anyway.
I have nothing to offer of value.
Maybe, I'm not autistic.
Maybe there's something really wrong with me.
Why can't I stop from feeling so bad?
Maybe, I should delete this.
Maybe, I should delete my whole blog.
Why do I waste so much time?
I'll bet my husband is going to come home and just know I wasted my whole day on perseverating over something that is really minor.
He'll be disappointed.
I'll bet everyone is in me.
Why do I let everything bother me so much?
Why do I let my thoughts get so negative?
I wish I had someone to talk to that would understand.
I wish that I could talk to someone without feeling judged.
I wish I didn't feel like such a freak.
Maybe, tomorrow will be better.
Tomorrow has to be better.
This is embarrassing.

That is the making of pre-meltdown.  Actual meltdown would have had lots more cussing, and my anger eventually spewing the other way to others, where I would have deleted my page, blog, or at least some people.  I did go 'unlike' some pages, but I didn't do anything big.  Remembering my mantra:
"Don't do anything permanently stupid, because you're temporarily upset. "  I figure if I can hold off on any actions for a few hours, then if I still feel the same, the action can be carried out then.
So far, I'm a little calmer....