Saturday, May 28, 2011

Blogger has angered me.

I spent the better half of this week writing a post about my recent trip to the doctors and my week (so far) on Ritalin. I'm quite angry that it told me it was saving my blog via the "auto save" and now its not here. A few days our electricity was on and off because of thunderstorms, and every time my computer started back up, the blog post would still be intact. The day I try to post it however, its missing.

I just wanted to share my anger, because I worked really hard to give a picture of my first week on a stimulant (for the first time in my life). Hopefully I can find it in myself to re-write it. For now, I'll continue to grumble.

Thursday, May 12, 2011

When Empathy and Advocacy Collide, Will You Speak Up?

Autism Awareness RibbonImage via WikipediaI recently read the post, "Empathy and Advocacy: Closing the Gap" by blogger Lynne Soraya who writes the blog "Asperger's Diary" on the Psychology Today website. She contacted me on my twitter @AutisticMama and said that she was interested in my opinion as a parent.

Being autistic myself, and also being a mother to children on the Autism Spectrum I can say that I've been in both situations quite a few times and I don't think there is a right or a wrong answer. Like many other situations in life, the choice to stand up and speak out is individual.

It's really hard for me to be in public and see how common it is for people to react negatively to others, no matter what the issue is. I think perhaps because I'm actively not looking at them, I am picking up on everything else. I can feel and hear far more than most neurotypical people around me can. I don't see it though, I feel it. This type of emotional response is more common than I once thought, common among those of us with an Autism Spectrum Disorder anyway. Once thought to lack empathy, professionals are starting to realize that our emotional responses are often too much, not too little. And often times the emotions are being received at such a fast rate, that we become overwhelmed. Bombarded and assaulted by our senses. As always, research is ongoing as to why this occurs.

I usually know instantly when I'm around someone that is cognitively or neurologically different somehow. There is an unspoken language I think. I see those subtle signs of stress, or agitation. I can see that they aren't gazing at a flower, or walking by daydreaming. Instead I can see that they're counting the petals on the flower, and humming the theme song to a TV show over and over while running their index finger round and round on their thumb nail.

I see these things because I live with them daily in myself. (this is of course a doubled edged sword. It means I am capable of seeing when my autistic children are coming close to meltdown point, but sometimes my mommy-mode mind isn't listening. This is incredibly frustrating for me and I will tell you honestly that I do feel guilty every day for trying too hard to be a neurotypical mom when I'm not. It's a difficult line to ride.)

I can't tell you the number of times I've seen children flapping, spinning, or scripting to themselves and watched interactions with their parents and been shocked to learn later (in cases that they become acquaintances )that the parents don't see their children in distress at all. In fact, they complain of all the typical autism symptoms, but don't realize their child is autistic at all. Meltdowns are called temper tantrums, stimming is called "being a freak" or the child " being a weirdo." and other behaviors are receive responses like, "He is all boy!" and "she's just a sensitive girl that's shy and keeps to herself."

Now I'm all for not labeling everyone just for the heck of it, but I still cannot fathom in this day and age how people can't know their child is autistic. Then I remember...before autism was a part of our lives; I didn't know either. I just didn't know.

It's like not knowing anything about Parry-Romberg syndrome or Ribose-5-phosphate isomerase deficiency. Why don't I know anything about those disorders? Simple. Its because they haven't impacted my life yet. Is that a great way to live, running around completely ignorant that these disorders are affecting children? No. Its also not feasible that I learn about every disorder and disease out there. (at least not without obtaining a degree while doing so) Familiarizing myself with the "most common" diseases and syndromes is do-able. And Autism should be on that list for people I think. I think its do-able for every person out there. (Of course I also believe everyone should know how to perform CPR.)


It takes time though. Awareness doesn't happen overnight. To be honest, the arguing among professionals about the different types of autism and where and how they're going to change things is off-putting to people. No one wants to hear more about a subject that is so filled with emotion and anger. Its like shying away from discussing politics. Autism has become like that. A subject that seems to have only two sides, those that know nothing and those that think they know everything.

Finding common ground and coming together to help people become more aware needs to happen first within the autism community, before we can reach others. Its just surrounded by controversy and drama. How can I even begin to talk to people about it when many have their own opinions about it already.

"Just another crackpot diagnosis."
"Just another excuse for poor behavior and bad parents."
"Yep sure, everyone has that nowadays."

Add in the vaccine debates and its just not friendly waters.

That being said, whether I speak up or not in a situation like the one above would depend on a number of factors. What exactly did they say? Was it loud enough for a lot of other people and/or the mother and child to hear? Was it very rude or very ignorant? How am I feeling that day? Have I met my social limit already? Am I already stimming like crazy myself and looking for the exit? Do I have my hands full with my own screaming kids? What do the people look like? Despite what they might have said, do they otherwise seem like they might accept me saying something to them, or do they look like they might scream at me for butting my nose in? Do I even have enough reserve left for me to really look at them and not just look around them? If I don't have enough reserve left to even look at them to assess the situation, then I won't attempt to say anything at all.

I try really hard to look at mothers in those situations and give them my "I know how hard it is, I understand" look. (which may come across as the creepy I'm watching you look.. I might need to practice more) If I have enough reserve to do all those things above, and find them to seem to be people that would be somewhat kind if I spoke up.. then I might say something like, "She seemed to me like she might be ____(insert something here) developmentally delayed, autistic, etc. Sometimes depending on initial reaction, I might then say that my daughter is autistic as well and that many children with autism flap their hands (for example)

Stopping to gauge their reaction is important because then I try very hard to know if they want or need more information, or if they think I'm a weirdo and they're secretly wishing I'd fall off a cliff. Sometimes I botch this part up. When I get nervous and think I'm doing something socially inappropriate (butting my nose in) I often do it more, or continually, because I get stuck in a loop and panic. Not very helpful.

I tend to use my own experiences rather than the child/parent in question. That way I feel like I'm not broadcasting their business everywhere. And of course, I also preface anything I say with words that make it very clear that I don't know 100% that the child is autistic. She could have a brain tumor, or some other neurological disorder. I don't know.

However I do know that being rude isn't helpful to the mother or the child, and if I can make them think about the situation in a different light, then awareness has been achieved. Because in the end its not just about autism awareness. Its about acceptance, compassion and empathy for fellow humans. No matter what the diagnosis of the child might be, its secondary to the lesson in being kind and non judgmental towards other human beings.

Wednesday, May 04, 2011

My Mini Lady Gaga & the screen protector

Our screen protector came today! I'm so happy! We took it out of the box and it was generously packaged in
bubble wrap. As you can see Odin took to the bubbles and completely covered himself in them! 10 minutes later he is still wrapping and rolling, stuffing and laying on it. Seems so odd to me because it's so loud! Yet that sound he is ok with! (and it's driving me crazy listening to it!)

We're waiting for daddy to come back from picking up Peach at preschool and then we'll put this new screen protector on our tv. We bought the tv about a month ago and we've been saving it ever since. Stressful! And we aren't in the position to just buy a new one if the kids break it. We would have nothing for a long time. I can't justify buying a flat screen for no reason. I was shocked to find out that these tv's break easily! What?! Ack! *dove across the house to save or from a Tonka truck again. I started researching a solution and found that a zillion people sell screen protectors. Finally, at 3 am I decided on one from and after a large amount of money, my husband bought it.

Review coming shortly! We have 5 kids, four of them are 7 and under.. Two of them are autistic, and ADHD, and 3 have anxiety disorders. One has a cognitive disorder, another has speech and articulation disorders. They all love to dance and move around and use my house like a playground. So this screen protector has GOT to be good. I'll let you know how easy it was to install and any issues we find, in my review. Boy I can't wait to put it on!

Monday, May 02, 2011

The Spiral

It reminds us where we came from, and reminds us that the journey is just as important as the final destination. In a world that revolves around instant gratification and fast answers, the spiral reminds us to take our time and slow down. Thank you Ivy for reminding me today. :)

Ivy's Artwork

This is such a beautiful picture made with a mixture of paint, crayon, pastels, chalk and pencil. Ivy brought it home today. I can't wait to frame this one and hang it in our living room! I remember being her age (7) and being so proud of myself and my artistic ability. I want her to feel proud of herself too. :) I have a few more pictures that need scanning, I'll upload them a little later. Color for my walls! Happy Beltane!

Why I'm Not Celebrating

The other night I received a text from my mother in law telling me to turn on the news. Since we live in different states, this could only mean it was something national. First I refreshed my Twitter feed since I was holding my Iphone but I saw nothing. I turned on the news, and there on the ticker I saw it.
Hamid Mir interviewing Osama bin Laden for Dai...Image via Wikipedia
"Osama Bin Laden confirmed dead. US has body. President Obama to speak shortly and address the nation."

I heard the TV announcer saying that this was a monumental day and would go down in history as a great accomplishment for the United States. I felt for sure that I should have felt a positive emotion at reading that, since others did. I re-read it again. Still, I felt nothing but a sense of unease, and sadness. I remembered a post once directed at me on an online forum, a conversation about war and politics that got heated.. "You're anti American! You have no pride for your country!" For the first time I contemplated the words I saw years before. Maybe they were right? Maybe I'm ashamed of my country. Maybe I don't understand "pride."
Image representing Twitter as depicted in Crun...Image via CrunchBase
I did my Twitter duty and I re-posted the news because there was nothing on my feed about it. I wanted to help update and let the world know the news, because like it or not..its news. Then suddenly the Twitter feed started updating with the happy exclaimations by people. Not just reports, but jubilation. Cheers and shouts. And it was constant. They didn't update once or twice, but continuously. And then we waited for the "formal" confirmation by the president. I watched his announcement. I struggled to find different emotions. The "right" emotions.
2011 05 01 - 2044 - Washington DC - Osama Cele...Image by thisisbossi via Flickr
I debated what to put as my status on Facebook that night. Anything that I felt, seemed out of place. Again, I was the odd one out. Was updating my status important enough to rock the boat? Am Official presidential portrait of Barack Obama...Image via WikipediaI strong enough to deal with the aftermath? Am I making something out of nothing again? This is such a big issue for so many people. its intertwined in our politics. It IS our politics. Its not something we talk about over dinner. I stay far away from politics. Don't get me wrong! I do my research and I vote. (I even bring my kids with me!) I just don't seem to be able to stand on my own two feet against the people that want to fight about whose side is right and whose is wrong. I lose important words. I stumble. I sound uneducated because of my word retrieval issues.

I want to find the middle ground. I want compromise and fairness. I want equality for everyone, not just the groups that are most important to me. I don't DO politics. I don't understand the hatred that seems to drive people. So Osama's death? I knew this was going to be a big deal.

I can't say how long I watched the twitter feed, but I know it was only a few seconds in when the first Osama jokes began being tweeted. I realized that what I was watching and becoming confused by, was really no different than what confuses me on a daily basis. Large groups of people blindly
following others, and not caring where they go because, they didn't start it after all.. Dictated by the moment, the feeling, an event.. its wild.. primal.. and unsafe and unpredictable to me.

Let me be another person to say it.. people with Autism DO have empathy. They are capable of it. Sometimes, too much of it. What I don't understand is how to go about acting on my empathy. And I can't shut it off. So while the world was busy celebrating his death.. I was saddened at the loss of a life. No matter how many acts of violence he did, he was still human. I don't believe that any death deserves a celebration.

My grandmother taught me that two wrongs don't make a right, and that my reality is mine. I cannot be judge and jury over someone else. Only they can do that.

I really want to be proud of our country, but the fact is... when this happens.. I'm ashamed. Beach balls, singing, chanting, partying, and gosh the pictures...Yes, I know it wasn't a real picture, the one with his head dripping and bloody on top of the statue of liberty. Still, it was disturbing. And if
any country did that to us we'd be outraged! Barbaric! Yet we believe its okay to act that way as long as we're the ones doing it.

Every time I hear something said towards Osama part of me dies inside and I want to crawl under a rock. I want to wear a tee-shirt that says, "I did not
seek out revenge. " Because that's what this was. This wasn't "justice" served. This was revenge, plain and simple. Self defense and justice doesn't happen a decade later and without any words spoken, simply death. Where was the fire fight that supposedly happened?

Others have argued that he was a cruel man that did our country harm. That's true. Yes, our military men have died. Yes 9/11 was a tragedy. It truly was. But aren't we bigger than that? Have we not changed at all in the last hundred years? Where is our honor really? I believed our moral code to be higher. We talk about keeping the peace, and treating POW's with the dignity that all humans deserve.. meanwhile things like Guantanamo torture are revealed, and we dance in the streets at someone killed at our hands.

Do you know how many innocent peoples blood are on our hands as well? Do you know how many villages we air raided? How many "Oops, that shouldn't have happened. My bad" went on? By waving our red and white flag and saying the US stands for freedom does not mean we're in a place to be judge and jury all the time. It means we're a big bully. Where was due process here? What happened to a trial by a jury of your peers? Does it all get thrown out the window when you become a terrorist? An extremist? If not, what happened to those plans to capture him and bring him back alive? Did the president act in the manner that he should? (I believe if we had not killed Osama, someone would have targeted and killed the president. It was a classic catch 22. )

I don't know the answers to those questions, but by looking around the internet; a lot of people feel they have the answers. We were right, no questions asked. Really, how is our mob mentality any better than Al Qaeda's is?

He might have been evil to us, but Osama was a leader to other people. He was a hero to them, leading them in the war against the US. Fighting back against what they believe to be a huge giant of a country, claiming stake in everything. (We forced phone companies to split up, we forced Microsoft to stop their monopoly..) I can't seem to understand, how others can sit here and cheer about death like they have been. Grown adults acting like this was a Halo game they've won. This is real. These are lives not yard trash in World of Warcraft or EQ. Others are
mourning for his death, and I feel for them. A loss is a loss. He was human, and for that.. I feel sorrow at his death.

I do feel happy that those affected by 9/11 can feel closure, I really do... but I don't see the celebrations as being respectful of life or death, and as Americans I thought better
of us than that. I cannot stoop that low. I just can't. I can't be happy over the death of anyone. Please don't misunderstand. I don't want to trivialize 9/11. Though I didn't lose a loved one in it, we were affected. And I watched 24/7 coverage. I watched the second plane crash into the tower.. I cried for weeks and still duck and panic at the sound of a plane overhead. I understand that those IN the towers and those that lost their lives are going to impacted far greater than I ever could be. But I do feel their pain, and why this would be important to them.

However, revenge 10 years later seems counter productive. We proved that we're aggressive. We proved that we are no better than they are. No more civilized. An eye for an eye.

The war on terror is not over. Its only just begun. We've made a huge dent with the death of Osama, but don't you think they'll retaliate back? Clearly they have the means or 9/11 wouldn't have ever happened. So now we sit here and wait and see where Al Qaeda strikes next. And they will. Its naive of anyone to suggest that this is the end, our troops are coming home and peace has been found at last.

America likes to put keywords to things like "freedom" "justice" and "peace" and we like to stick our nose in to help other countries fight their own battles. (meanwhile we sink in our own debt, our people are jobless, streets and shelters are overflowing and we need help here.)

If the motivation of the USA was to help those people in need, then that would be a great thing. It really would! Unfortunately that's not the real reason. Our motivation is to do exactly what some ex friends of mine just recently did to my family.. offer help in times of need, offer offer offer...
reassure that it was okay, that they really wanted to help.. and then turned around and used that as proof that we're "needy" and desperate and "users." America helps out so that we can feel powerful. So that other countries can look up and say "Yep.. that's America.. they're big. They're strong. They helped us so I guess we have to back them now"... we do it to build allies and remind people just how powerful we are. Thats not friendly or peaceful. Its a strategic move that we've been making for quite awhile now.

In the coming weeks, more information about the raid and killing will surface. Conspiracy theories will come out, and eventually at least some of the American people will expect answers not only from Pakistan, but from our own government. Revenge doesn't gloss over the responsibility that needs to be taken. The legalities of what happened, and if it was morally right. We're knee deep in it now folks, and if you couldn't think it could get deeper..think again. It will. Osama's followers will get their own revenge. And why not? We just showed them that violence is the way to solve problems. They will target more places, more buildings, more modes of transportation. (edit: from their own mouths, they are now going to target our railway system) We're doing nothing but lobbing a ball back and forth at each other.

Today the American people want to see photographic proof that it was Osama. They say they are not concerned at all about further threats. They're buying flags to fly higher. There is a renewed faith in the American people, and a renewed sense of safety and peace.
2011 05 01 - 2181 - Washington DC - Osama Cele...Image by thisisbossi via Flickr
I want to know what box of cereal they're pulling that faith from.
I think my cereal is stale.

What murdered these four girls? Look around. You will see that many
people that you never thought about participated in this evil act. So
tonight all of us must leave here with a new determination to struggle. God
has a job for us to do. Maybe our mission is to save the soul of America.
We can't save the soul of this nation throwing bricks. We can't save the
soul of this nation getting our ammunitions and going out shooting physical
weapons. We must know that we have something much more powerful. Just take
up the ammunition of love.”

- Dr. Martin Luther King, 1963 -

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