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

Social Media and Dignity- When does sharing go too far?

"I had to go out in that storm to round up our horses, because my husband was too drunk AGAIN to do it. Pretty much like every other night."  a mother at our playgroup for kids birth to age 5 added to the conversation. She was mostly speaking to me as I was at the table with her, but her response to the horrible thunderstorm that had gone through our area was completely audible to the entire room. Everyone shifted awkwardly in their seats, and eyes lowered to the floor. I muttered something about "Sorry to hear that", or maybe it was "That must be hard." I don't quite remember. It was a good ten years ago that this occurred.  I don't remember exactly what I said back, but I think I said something to ease the tension.  I hated the feeling of all the momma judgement in the room.   It was only a decade ago, but long enough for social protocol to have shifted for what was private, intimate information, and what was okay to be shouted to a room of acquaintances. This woman's very private proclamation was socially awkward, and made the entire room uncomfortable. The social atmosphere was not one of best friends, and this private information was violating the small talk conversation style that was happening at the time.

This was life pre-social media.

Now seems to be the age of over-sharing  How many times do we come across Facebook posts, and tweets about subject matter that we would have never shared with a group of virtual strangers 10 years ago? We seem to have forgotten about the circle of familiarity rule. Suddenly, everyone's private life is in our face with information that we used to save for family, and close friends.

There's a specific kind of over-sharing that makes me particularly cringe.

Changing Perspectives #ThisIsAutism

I must admit, I did not fully read Suzanne Wright's Call To Action until this morning. I am familiar with Autism Speaks, and their agenda, so I had a pretty good idea what it would contain. I wish I could say I was shocked, dismayed, or even surprised at what I read when I took the time to fully consider the entire letter, and what it meant, but I wasn't.

I would like to counter Autism Speak's ideas that autism is somehow new, and somehow only affecting children. I would like to somehow understand how an organization could have so much access to autistic advocates, yet deny those people a say in advocating, and speaking on behalf of a 'disorder' they're diagnosed with. I would like to ask them why they alienate us. Why they scream for support from the government, but offer not a dime to adults on the spectrum needing support today.

But, I won't.

Quick Points for Effective #Autism Advocacy

Since Beans school incident recently I have become all that much more aware of how school improperly handles children with needs they don't understand.  I am seeing a re-occurring theme that I find so unsettling.

It's the over-correction, under-supportive, non compassionate, non empathetic way that schools often view, and treat our children.

It seems so common that I find most parents don't even notice it.  They just see the way their child is treated as the way it is.  It doesn't have to be. Most find what happened to my son to be appalling, but what they don't understand is that if their child is being restrained at any point in their day that could easily be their child.

I have written a lot about behavior supports, and such, and will include those entries at the end of this entry for a reference to those that may not have seen it. As a quick reference, here are some points I'd like people to remember when dealing with the school, and autistic children.

* If your child is struggling in any way with school personnel, and behavior request a Functional Behavior Assessment. Don't think that it would cause too much trouble, or think that just because a certain para is working with your child that they'll be okay. Don't let the school make you feel that they're doing so much that you should be grateful, and not ask for more. That was the biggest mistake I made, by far.

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.

Update- Beans and the School Investigation

In my last post I talked about the beginning of what has turned out to be a nightmare on so many levels. Today, that nightmare has gotten scarier.

I received the update from the school police officer who told me that he could not find any criminal conduct in his jurisdiction. He says he interviewed everyone, and no one is criminally liable for Bean's injuries.

I asked him then how does he explain them, and he just kept repeating that he couldn't find anyone to hold criminally liable. No one (obviously) owned up to it, and Beans can't tell us, so he says a crime hasn't been committed.  This makes about as much sense to me as finding a murder victim lying dead with a gunshot to the head, no gun around, and declaring it not a crime, because the victim can't tell anyone what happened, and the police don't know what happened.

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.

Square Pegs and Civil Rights

I mentioned some school issues with Bubby in the post before last  New Places & Trying New Things.  I left everything kinda up in the air during that post, and promised a follow up.  So, here it is.

We did make it safely to the new counselor's office, despite sleet, blown tires, and broken windshield wipers.  The counselor was very nice, and appeared to have a good understanding of autism.  I was really nervous that she would either a). not know much of anything about autism, or even more so Asperger's. Or b). think that I am one of those moms that like to make a big deal out of nothing, and doubt he is autistic at all.  So, I was relieved when my fears were baseless in reality. I think she and Bubby will get along great, and I look forward to continuing to see her.

So, that is a super positive in our corner.

The behavior consultant observed Bubby for the second time yesterday, and called me as I requested to discuss what she thought. The first time, it was all rainbows, and flowers. That worried me, because even though I know 2/3 of his day is pleasant as she observed, there is the 1/3 that is not, which is the third that is causing serious issues.  This time when she observed it must have all just lined up right, because she was able to see his every button pushed, and severe meltdown ensue.  I was not the least bit pleased at the meltdown in, and of itself, but that she was able to see it unfold. It's hard to write a behavior plan, and make recommendation on a student that you've never really seen the problem "behaviors".  We discussed several things that may help on the phone.  She also disclosed to me that she will be meeting with the special ed. teacher tomorrow to discuss with her what her thoughts were.  I sent an email, and invited myself to the meeting.  I'm sure the special ed teacher is less than thrilled with that, but at this point I feel I must get pushy.  The behavior consultant also disclosed to me that she had at one point asked the special ed teacher if she would like for the county's autism specialist to come out, and do some training, and that idea was turned down. That did not make me happy, so I have called the autism specialist myself, and am asked for her to consult with the behavior consultant to decide the next steps should be. I have met the autism specialist a few times, and she is a bit abrasive, and difficult to get along with in a lot of ways, but I am desperate. This may backfire on me, but I have to take that chance. I asked around to people that have worked with her before, and the general consensus is that she does not work well with children, but is great at putting together plans, and training. So, I am feeling like bringing her into the picture is worth the risk.

So, at this point it is just a lot of research, and searching out the right people to help me help my son.  The local advocacy center didn't have anymore ideas, than the ones I am already pursuing.  I sometimes think I ought to get a job there. lol  I am scouring our state's ed. website, and printing pages that speak to the issues we are having, and what the law says about Least Restrictive Environment, Behavior Plans, Present Levels of functional Performance, ect... I am also searching through Wrightslaw site to determine what actions I need to take, and what actions have been successfully taken by parents before. I am printing out documents of such court cases.

I feel like I am doing all that I can to ensure a proper education of my son in a regular ed environment. It may not be easy, but it is necessary.  If all else fails, I will homeschool him, but that is last resort.  To me, I am not just fighting this fight for him, but for every disabled child that comes through our tiny town's education system.  They try to break them to fit them into what they want, and if they can't they send them to special classrooms in another town. Nope. Not happening here, if I can help it.  He deserves to have a place in school, just like anyone else.  He also is well liked, and accepted by his peers.  It's the adults that are the issue here.  It's time for outmoded beliefs, and ideas to get an update. 

New Places &Trying New Things

I thought this might be a good day to bring back some more journal type of blogging. Sometimes, it's nice to blog in a more structured form where there is a clear beginning, middle, and end to the whole piece.  Those kinds are like essays, and they have their place in the blogging world, but then there's something to be said for the freestyle of writing that flows naturally from the writer as if you were having a conversation with them. It's a really authentic way to write, because readers can really feel they know you, and are a part of your everyday life, whereas essays type writing, while passionate, can be a bit colder. Soapbox persuasion is meant to express a particular point of view with a means to explain, or persuade, rather than to just discuss.

So, to kick off autism awareness month I am here to just write about my experiences. I may get an idea in my head later on about a good topic to write about, but right now I am too busy living my life, and doing what I do to really do much more.  Autism awareness is something I engulf myself in everyday.  April is not different in that for me. My page, this blog, and my advocacy at my boy's schools is what I do for autism awareness everyday.  Sharing some social media photos, and wearing blue is not autism awareness to me.  It does not do anything to change the current status of how autism is viewed.

So, here we go... Today, we have an appointment with

Feeling Overwhelmed By Negativity

I'm not sure where this post is going, or how to begin in the first place. It's partly formed inside of my head, but mostly it's just a big ball of emotion that I am untangling as I move along. I think blogging might help me to untangle it more, thus freeing me up to be able to feel unhindered, because right now I do feel hindered, and weighed down a little bit.

There is this thing that seems to drive a lot of human behavior. I don't know what it is called, or even if it has a name. It seems to be a sort of cohesion within groups that moves people together united in a common goal.  I don't understand it. I don't like to be involved in it. I feel completely overwhelmed when people around me are engaging in it. This is not just as autistic thing, because I have seen autistics engage in this form of socializing as well.

I can try to describe what I mean with examples.

Usually, this phenomenon begins with an accusation of outrage. Someone has done or said something that is upsetting to someone else. They then claim outrage. They take this outrage to friends, who also claim outrage and now the drama is on.  They are united in a common cause against this insult, this injustice, this miscarriage of humanity. They want the perpetrator of the insult to recant, to retract, to absolve their words and the harm they have inflicted with their words, or actions. They form a mob that will not let up until their attention gets turned somewhere else.

There is also the lesser form of the same behavior. Where there is something said (I'm going to use autism here, because that is the community that I am involved in, but I think this sort of thing isn't limited to the ASD community) in a book, or a news article about autism and the community goes wild with accusations of 'stereotyping' and 'prejudice' because what was said does not fit the definition for their own autism, or their child's. No matter, that the spectrum is broad and that it may fit others, usually quite a lot more severe than themselves.  It's as if no one is allowed to have an opinion, or use descriptive terms about ASD unless it is all inclusive of the whole spectrum, even those with Asperger's. I find that to be an impossibility most of the time.  The spectrum is wide and varied.  I also know that those same people will likely have all kinds of negative things to say about the way I used 'severe' to describe autism, because anymore there seems to be no way to describe anything within the autism community without being judged as this or that, or as being pushing stereotypes. I was on board the autistic's rights movement, until it derailed into this mess of no one being allowed to even speak for fear of being a target of voracious arguments.

When I am in the midst of this much negativity and complaints I soak it up like a sponge. No matter how much I try not to, I still do.  I feel heavy, and emotional. I get so weighed down in the negativity that I can't function all that well. I don't like this feeling. I'd rather be building up what I think is right, rather than finding what I feel is wrong and making it my mission to out this wrong.  For someone who has a history of depression my brain can only handle so much, before I start to feel down and out by it all.

Like, last winter my husband was not as busy with work as he usually is. The brought with it financial woes, but also time on his hands. He chose to watch the news with quite a bit of this extra time. So, here is someone who is already sensitive to negativity due to life circumstances watching 24 hour news networks where there is always something bad happening.  He started to become even more depressed and outraged the more bad stuff he saw. Everyday, there is no shortage of injustices for the media to report, and they make it a point to keep us upset and fearful, so that the drama and suspense keeps us coming back for more.  I finally had to tell him to shut it off and find something else to do with his time. He was getting too wrapped up in the drama and it was not doing him, our family or the world any good to dwell on all that negativity.

I am starting to feel that way with my autism newsfeeds. I am beginning to feel overwhelmed with all the negativity from all the bad things that can, do, or might happen. The drama that is always present, because there is always someone in the media somewhere that said something that was un-pc about autism. It's not that I think it's okay for people to say bad things about autism, but I can;t let myself get worked up every time someone disagrees with the way I see the world. There's simply too much good to be doing for me to do that. You know the saying "Some people look for fault like there is a prize for finding it"? That is how I am feeling about a lot of the things I'm seeing in the ASD community lately.  I have unliked pages and hidden quite a few. I won't argue. I will just simply redirect my attention.  This is what I need to do in order to maintain my own sense of wellness.

The Undateables? Not quite.

Has anyone in the UK seen the show 'Undateables'?  I haven't, but from what I've seen I 'm still leaning toward the POV that it's voyeuristic and portraying the misinformed public opinion that disabled people are less than in the world of romance.  One thing I do see is that it is in the spot light and people are now talking about it.  That means that the general public is having to think about the generally accepted stereotype that people with disabilities are somehow not meant for love, relationships, and sex.  We can and we are, and do do those things.  People most often hate, or repel what they don't understand.  I am hoping this show can help everyday people empathize with disabled people in the way that they see they're not so different after all. It won't seem so odd anymore, thus removing some stigma.  Getting a discussion going, exchanging opinions and getting people really thinking can all be good things.  Humiliating vulnerable people that just want love is a where I'd see the show possibly being negative.

What's your opinion of the program?

The Public Face Of Autism

I don't have time for an incredibly well written, witty post.  With this kids still on holiday break and hubby at home the last few days my time has been spoken for.  I do however, have a small favor to ask everyone in the autism community.  See that picture above the post?  Stop using it as a stock photo for autism. Please, just stop.  It is degrading.  It is humiliating.  It is stigmatizing.  It is perpetuating stereotypes.  It doesn't represent autism.  It doesn't represent anything other than outdated, misconceptions of what autism was thought to be. I'm tired of seeing it attached to 1/3 of every news article, or otherwise information about ASD. Do you want people to treat your autistic child with respect, love and kindness? Sure you do.  We all want that for our kids. Then, please portray them as possessing those qualities and deserving those things. Insist that others use respectful images and words in association with autism.  No, this doesn't mean that Autism is a bed of roses and always should be spoken of as such.  Just remember you are the ones that are telling the world what it means to be autistic.  Ask yourself before sharing and speaking... is this a representation of how I want others to view my child/loved one?

                                         Thank you.