Thursday, November 13, 2014

Reflections

A couple of days ago I logged onto Facebook and saw I had received a message from someone who has known me since I was 13 years old. She was my best friend for a very long time. Some of my best memories have her in it.

Anyhow the message said:
"I'm watching the Gilmore girls and Lorelai reminds me so much you. The best personality."
(and whatever your opinion on the show or character , it doesn't matter...)

I smiled so big my face hurt. The compliment was so appreciated. I'm not used to people thinking of me randomly, especially people who are not a constant in my life... so it was really awesome.

But, that feeling didn't last long because almost immediately I felt shame.

Shame because I don't think I've been that person lately and in the words of one of my favorite songs "I wouldn't like me if I met me".

Ever since the word autism has entered my life I have been so passionate about it, about promoting acceptance. At the start of my journey I got a lot of things wrong though. So much wrong. I go back through my emails and I just shake my head.

But, I'll give myself credit, I was on the right track. I was trying, although at times I didn't get the language quite right and sometimes I even missed the boat completely!

I'm human and that happens.


"I did then what I knew how to do. Now that I know better, I do better"
Maya Angelou


I've often told people that this has also been a journey for me. Sometimes it is painful to admit that I've screwed up. I'm autistic like my son, so aren't I supposed to know these things automatically? Well no.. there's this thing called internalized ableism...I have that.
"The expert at anything was once a beginner."

I think I've forgotten my roots.
I forget how far I've come and how much I've learned
And am still learning

Lately it feels like all I've been doing is screaming at people.
Lately I feel extremely angry.
Lately I have had lack of patience.
And most important of all:
Lately I have not been helping anyone.

Believe me there is plenty of stuff out there that is for angry making. That anger is very justifiable and never something I would police on other people. (and I suggest no one else do it either)

Ever since I was very young I have been a justice seeker, which causes me to be a very passionate individual. Sometimes that passion is so strong and the need is so compelling that I get consumed by it.

But, I want people to listen to me because I have this undying need to help others. However, I recognize that I've built up a wall and made myself inaccessible to other people. I've got to start tearing down this wall.

This isn't about tone or being popular. I've never been popular in autism parenting circles and I'm certain that isn't likely to change. (unless there is some huge overnight paradigm shift, then maybe). I am also a huge believer in every voice counts and to listen for content over everything else.

I used to be able to over look certain phrases or words and even attitudes in order to reach people and help their children. But, I have become intolerant. I'm not talking about the type of intolerance many claim autistic adults have surrounding civil rights, bigotry, abuse, murder and being real people.  I'm talking about intolerance of those who are trying and want to learn... but aren't quite getting it. You know , much like myself in the beginning of my journey.

I've shut them out.

I've turned them away

And I am calling myself out on it.

I want to do better, be better and help more people.

My friend Beth, who blogs at Love Explosions, wrote something similar to what I've written here about her own downfalls and evolution... she writes:


So that’s me owning my history.  And me apologizing for berating those parents who simply have not been given the opportunity to parent with the support of a community that advocates love and acceptance.
This is me committing to giving parents (those that are receptive) the road map to community and the space needed to evolve.

And to this I agree.  I commit to this as well.

I've always said "Sometimes I am just planting seeds"... Seeds are good, seeds grow into plants and those plants blossom, eventually producing more seeds.

It can take a long time for this process to take place, but when and if it does, it is a beautiful thing.



“Don't judge each day by the harvest you reap but by the seeds that you plant.” 
Robert Louis Stevenson

Tuesday, November 4, 2014

Not again... #JusticeforLondon

As I am just beginning to wind down from Kelli Stapleton's sentencing and trying to focus my advocacy efforts on more "positive" things... another beautiful autistic child was taken from this world by his own mother.

Image is of a fair skin 6 year old boy who is smiling, wearing a brown wide brim hat
London McCabe, 6 yrs old...

SIX YEARS OLD

His mother threw him from the Yaquina bridge in Oregon into the freezing river.


And then called police to tell them she did so.



But I'm supposed to have compassion for her, they say.
I am supposed to not be angry with her, they tell me.
I am supposed to not be angry with people who have compassion for her, because she had shoes I haven't walked in... shoes are important you know.
 

But I AM angry and I have NO compassion for his murderer... and I do not apologize for that.

All I keep thinking about is him scared, confused, cold, screaming, falling, wet, possibly drowning, and dying.

Then  you have her, who so smugly called the police after the fact, when she could have so easily called before taking his life. But, she didn't call before because she didn't want anyone to stop her.

I only feel compassion for London... my heart aches only for him.

He was a beautiful young soul, full of life and his mother stole that from him.

There are no excuses for killing a child, any child.

And if you are one of the ones who continues to make excuses for the murderers and abusers of disabled people, then you  have become complicit with these heinous acts.

You are a part of the problem. You continue to allow this to happen! You encourage this!

Until society starts holding the abusers and murderers of disabled childen to the same standards as they would the abusers and murderers of nondisabled children... nothing will change.

Until society stands up and makes a loud noise, demanding that  real justice be served and disabled people seen as real people... nothing will change.

Stop having compassion for these parents who murder.. they are not parents.. they are murderers.

I am tired of autistic kids dying at the hands of those who are supposed to love and protect them.

Image Description: Red faded background, with wrinkled paper texture. Text reads:

Can you imagine telling your child: "I understand why people kill children like you?" No? Well, that's exactly what you're doing each and every time you have "understanding" for murderers of the Disabled. -Kimberly Faith #WalkinIssysShoes #IamNOTkellistapleto
n




Tuesday, October 14, 2014

Giving Up The Pursuit of Normalcy = The Pursuit of Happiness

Disclaimer: This is an older piece of mine that I have revised. I acknowledge I am not a perfect parent. I have learned so much in my nearly 17 years of parenting because I've made many many mistakes. Many of the ways I used to be when my children were younger don't align with how I am now. I never once thought I was doing harm, demanding compliance, or trying to push "norms" on them.

As you read this please keep in mind it was many many years before the doctors properly diagnosed my son, even thought we'd been seeing doctors about it since he was about 3.5 yrs old.

I see the pursuit of normalcy become “the thing” for many parents of autistic kids. They put so much effort into trying to make their kids blend in with society. They are afraid their kids will never be accepted or successful if they are not perceived as normal. 

I am huge on acceptance, but it has been a journey for me. 

I did not go though the grieving process many parents of autistic children speak about, but I did go through not understanding or respecting my child’s limitations. It’s been an ever changing process for us. As he grows, I grow as well.

Like him, I am Autistic, but he has many struggles I have never faced. Realizing that was hard, especially when my child was a walking, talking,and seemingly very capable little human. It was not hard for me emotionally, it was literally hard to fathom that he truly couldn't do certain things.

I grew up in a household where “try harder” and “don’t be lazy” were taught. If you were not reaching a goal you simply were not trying hard enough. So, I thought this was how I was supposed to raise my children as well. I thought every human being was supposed to be capable of the same things at the same time, and if they did not reach those goals, they were not trying hard enough. This translated into me thinking negatively about my own shortcomings and struggles as well.

My son was never delayed in areas of normal developmental milestones; in fact he met most of them very early. This led me to the assumption he was exceptional in ALL areas.  By the time he was 4, I could see he was behind in certain areas, specifically motor skills, although I didn't know that at the time. In my mind he was not paying attention and not trying hard enough. I thought that if he was delayed the doctors would have seen it. I thought if he was delayed I would be able to tell. I wasn't educated on what motor skills problems looked like.


When he couldn’t ride a tricycle by the time his 2 year old brother had started to try, I stressed out. In my mind he was being lazy and not paying attention. He just needed to try harder. I made learning to ride a tricycle of the utmost importance .I took every bit of fun out of it for him. One day I just gave up, not because I accepted it, but because I was tired.

 A few months later we were outside and I heard “LOOK AT ME MOMMA”, and he was riding it, with a HUGE smile on his face. I think I cried.  He was nearly 5 years old. The same day his younger brother learned to ride as well.

The same was true for writing and reading. I tried to force him into doing them because he was SUPPOSED to be able to do it at a particular age. Yes I said force and by force I mean hand over hand, you have to sit here and do this thing because... yes I did that and am ashamed I did.

He just wasn’t able to, but I could not see it. School was pushing hard for these skills and I had been trying to teach him to help him in school.

Eventually, he did learn to read and write, in his own time and at his own pace.

I later found out, when he was 10 that he had developmental dyspraxia, which is a coordination disorder and it affects fine and gross motor skills. He couldn’t do those things I was demanding. This was also when we finally found out he was autistic. 

Anyhow, those are just a few examples, there were more things that I stressed over, but those are ones that stick out at the moment.

I took a lot of joy out of his early childhood. I missed out on a lot of things. I didn’t just let him be a kid. I focused so much on the things he couldn’t do, I was missing all the wonderful things he could. He didn’t achieve those goals because I forced him; he achieved those goals because he became ready.

After struggling with schools over age appropriate behavior and skills, I saw how illogical that type of thought process was. I also realized how they perceived my child, So, that prompted me to change my thinking. 

He was about 7 before I fully understood that he needed to do things in his own time. There was no need to stress about it; things would happen when they were supposed to. After realizing this, I thought I was finally at peace with it. "Normal" was not our thing, and that was okay. It didn’t mean we stopped working on things, I just didn’t feel the need to try to “Keep up with the Joneses “on these matters anymore.

When my son turned 11, a new thing entered our home, social anxiety. It didn’t manifest in the form of panic attacks and he didn’t verbalize he felt anxious either. But, his behavior told me something was not right. He developed trichotillomania (extreme hair pulling), which I also had as a child. So now my journey into acceptance takes a turn I wasn’t expecting.  I had not had to deal with these things in my child before and everyone always made me push through it. So I tried to push him as well. I thought it was what people do. I thought everyone felt this way and that somehow I was just “weaker” for giving in. I didn’t want my child to be “weak” like me.

My son was up for 6th grade graduation. I wanted so badly to watch him walk on that stage and receive his little diploma. Elementary school was so very hard for him. I wanted him to feel PROUD of his accomplishment. I did it when I was younger and he should too. It’s what is socially expected. It’s what PEOPLE DO. He DID NOT want to do it. 

We went into a power struggle over this for nearly a week before I realized I wasn’t really concerned about him. I was making it all about me. It was not fair of me to ask him to put himself in an uncomfortable position just because I felt I deserved to see this. He doesn’t owe me that.  As his mother I owe him the courtesy of listening to his needs.

In the end I didn’t make him do it, and I don’t feel like I missed out on anything either. I remember the pride and relief I felt when I told him he didn’t have to do it. I even told him I was being selfish when I demanded it from him. I apologized. HA! YES I apologized to my child and told him I was wrong!  Who does that? Well I do.

There were many other incidents similar to this one that we went through. But, this one was when I reached a HUGE breakthrough about what acceptance really was and what letting go of normal really means.

I realized that as a parent I put a lot of pressure on my child. I would demand he do certain things that were impossible for him, just because everyone else was doing it. I also thought he should do it because it was expected of me when I was younger. I had felt uncomfortable like he did, but I was made to push through it no matter how adversely it affected me.

I was also afraid of what others would think of me as a parent if I did not comply with social normalcy. Once I TRULY let go of the pursuit of normalcy, my child started to grow. The pressure was gone, the stressed was relieved. We started to have a real relationship.

Throughout my life:I've loved, I've lived.
I've hurt. I've lost. I've missed.
I've trusted I've made mistakes
I've learned
I realized that he could not possibly be happy with me breathing down his neck to perform. What he needed from me was for me to listen to him and believe him when he told me he was not able to do something. He needed me to advocate that message to others. I was so lucky to be given a child who had the bravery and strength to stand up to me and tell me "NO", as a child I never had that bravery.


Through this realization as a parent, I had a personal revelation as well.I realized I was jumping through a lot of hoops and doing certain things that were unnecessary just because it was expected. Once I let go of that I became a happier and better functioning adult. All those nonsense socially expected things were extras. These were things that didn’t benefit or add to my life. They were merely things I was just supposed to do because others did it too. They were an act that took away energy I needed to focus on just living every day. They took away from my success. I realized that typical people do these things because they enjoy them, and that it was not an act for them like it was for me.

It is hard to explain how tiring it is to live in a world that is too loud, too smelly, too bright, too fast and too confusing all the time. Add in having to remember to act “normal” and it’s a recipe for one tired, exhausted,  melty, nonfunctioning autistic.

I have allowed myself to decrease the amount of demands put upon me every day, I treat myself like I treat my child.. I now allow myself to ask for help and accept it as well. I don’t feel like I am weaker anymore, I feel empowered.  It doesn’t matter to me what other “normal” people do or how they act. I have manners and know how to be nice and my son is still learning!

No good ever came out of someone constantly putting on heirs about who they really are.  I am hoping by accepting myself that it trickles down to how my son views himself as well.

I’m finally happy.

I’ll take the pursuit of happiness over the pursuit of normalcy any day of the week.

Sunday, October 12, 2014

You don't get to speak for me, #IamNOTKelliStapleton!

When a parent of a nondisabled child murders or attempts to murder that child, we vilify that person. No excuse is ever good enough to justify such a heinous act. We talk about the victim in ways that honor their life.

But, when a parent to a disabled child attempts the same act, we are called upon to understand and have compassion for that parent. The victim's memory becomes clouded with claims of violence, being hard to care for,  and any reason under the sun (including things of the same nature I'm about to list) to justify their abuse/murder.

Most of the talks from Kelli Stapleton's supporters focus so much on how hard she had it, how she had no help, how she had no "services" (she did have services).

So, I've decided to do something that is generally not my style, I'm going to tell you how much help and services my family did and did not get. 
 

Please read and think.

I had my oldest son 2 months before my 19th birthday, just by being a teen mom statistically the odds were stacked against me.  I was young, naive and had not even gotten wet behind my ears in the ways of the world. And yet 16 years later, he is still alive.

We were so poor I was often isolated from the world. No phone, no cable, sometimes no car, certainly no internet (not until 2008, when my oldest was 10) and we were living so far away from any real life support... and yet he is still alive.

I had 2 more children by the time I was 22. I was stressed and stretched... still poor. By the time my youngest was born, my oldest was showing signs that something was different about him. I was written off by doctors often... and he's still alive.

I was sleep deprived for many years... he is still alive.

The doctors gave wrong labels, offer no helped, schools were a nightmare... and yet he is still alive.

In 2005 Hurricane Katrina took my home and stole what seemed like my life. We crammed our family of 5 into a 30 ft FEMA travel trailer for 2 years while we rebuilt our home and lives. That was really hard  to do with 3 children the ages of 3-7-ish (I just don't recommend it!)... my child is still alive.


Even after he was properly diagnosed (autism), help was minimum. I live in the poorest state in the union (Mississippi) and just recently (in the past 3 years) have we started getting autism services in my area, many years after he was diagnosed. Somehow, I've managed to keep from hurting my child. *sarcasm*

I was lucky enough to get a free advocate from Disability Rights Mississippi. Even after that, it took 2 years of literal fighting to get anywhere. Prior to getting help from DRMS, we'd been battling the public education system for 7 years.

At some point (about 3 years ago) my mental health was deteriorating fast. I was breaking. I feel deep into an eating disorder and my marriage was not healthy. My depression was the worst it had ever been, and yes I wanted to die. I even tried to make it happen more than once. But never, not even ONE time did I think about harming my child.

I might ought to throw in here that I had not been diagnosed autistic at this point.

I recognized then and still to this day that those things were not his fault and did not happen because of him. I was not mentally well, physically sick, not sleeping... and yet still I never fathomed hurting my child


I remember days I cried nonstop because I just couldn't understand WHY no one wanted to help him.. WHY did everyone see him as a PROBLEM. WHY WHY WHY? Why were they so bent on trying to break him? 

He hurt, he hated himself, he spoke out against the bad treatment from others the only way he knew how...


BEHAVIOR....


And still I never thought about hurting him.


Through all of this I also had no family support and many days I felt like I was parenting alone, but he is still alive.

We finally did stumble across a resource in the form of a day treatment school. But, that part of our journey ended in May of this year.

We are once again traveling with no services and we're flying solo... and he is still alive.
 

It offends me immensely that one mom blogger with a large following is allowed to say "I am Kelli Stapleton and so are you". Generalizing that all mothers to disabled children are teetering on the edge of murdering them.

All the excuses that she used I've lived through or am living through:

Mental illness
Life circumstances
Lack of services
Lack of support

I can also honestly say I've had a few mental breaks, none of which involved hurting my children!

Was it difficult? Hell yes it was!

Image reads #IamNotKelliStapleton
Why is unconditionally loving my children and
valuing their lives enough
to not murder or hurt them such a radical concept?
eccentrickimmy1.blogspot,com
Was it exhausting? Absolutely!
Could I have used more help? Damn right I could have!

It's not being sanctimonious when I say with absolute certainty I am above murdering my children.

Why is unconditionally loving my children and valuing their lives enough to not murder or hurt them such a radical concept?


I solemnly swear that if there is ever a day where I think "I am Kelli Stapleton"  I will most definitely find a way for my children to get protection from me and most certainly will not write a blog about it to drum up sympathy.

I promise, if this ever happens, I will take action that does not include trying to kill any of my 3 beautiful children.

Monday, June 30, 2014

#EducateSesame Autism Speaks is a Bully

By now Sesame Street is aware that the Autistic community is unhappy about their partnership with Autism Speaks. Many of us have reached out, but much to our dismay there has been no response from Sesame Street.


I don't think Sesame Street still understands how dangerous their partnership with Autism Speaks is for autistic children and people. I really and truly don't know how to make it more clear to them, but I am going to try.

Sesame Street,  


Remember when Big Bird was given the invitation to the Good Birds Club?

He was so excited to have been invited! So excited that he starts to sing, listing all the ways he is unique and different, while exclaiming he is happy to be just the way he is.

Big Bird shows up to the spot the invitation told him to meet the birds of the Good Birds Club, right away the other birds tell him he doesn't have what it takes to be in their club. They tell him his feet are too big, much bigger than theirs...

As a response to this rejection 
Big Bird asks Abby to use her magic to make his feet smaller, she tells him it's not a good idea, but does it anyway. The birds in the club still reject him, they tell him he is much too big to be in the Good Birds Club.


Once again Big Bird asks Abby to help him out with her magic this time he wants to be smaller. Abby grants his wish. The birds of the club were still not satisfied, and rejected him again, this time for being too yellow. 


He returns to ask Abby to change his color and she does. Of course the birds still found something about him they did not like, his voice... But, fortunately an adult intervenes and lets Big Bird know he was being bullied.


Then the Happy To Be Me club was born. It was an inclusive club that everyone could join, no matter their differences.

(For those interested the video can be found HERE and there is a transcript to the video HERE)


You see, Autism Speaks is Autistic people's Good Birds Club. They tell Autistic people they can't be included in this world unless they change the very core of who they are. Even then it's not good enough for them, they want to rid the world of Autistic people.


Autism Speaks is a bully.

They believe if we are not indistinguishable from our peers we can not possibly live a fulfilling life. 

They exclude us from our own advocacy. Autism Speaks has ZERO Autistic board members and ZERO Autistic people in any position that has decision making power.They do not see us as human, they talk about us without us. 

They send out PSA's that are full fear mongering and rhetoric:

Autism Speaks claims that Autistic people are lost and that their families are not living , but merely existing.


Autism Speaks compares autism, a different neurological makeup, to diseases like Aids, Cancer and diabetes. 

Autism Speaks sees nothing wrong with a mother wanting to kill herself and her Autistic child, simply because her child is different. (at 6:15)


Why would Sesame Street want to partner with an organization that clearly does not want to include the voices of those they claim to represent?

Why would anyone want to partner with such a hateful, hurtful, bully of an organization that threatens the personhood of those who it claims to represent?

Why wouldn't Sesame Street ask Autistic people to help with this initiative?

Why does Sesame Street think 2 grandparents with HUGE woe-as-me complexes would be better suited to talk about what it's like to be Autistic?


Why? Why? Why?

Image Description: Green/blue boycott logo frames a black chalkboard.
Lower right hand corner has chalk drawings of Big Bird, Grover, Ernie, Bert, Oscar,
Elmo and Cookie Monster from 
Sesame Street with multi colored chalk pieces and white eraser in front.
 Blue/Green Boycott logo in upper left corner with a black letter "S" and white t
ext reads: "S" is for Stigmatized
That's how we feel when words like "burden" "lost" and "broken" are used about us...like Autism Speaks does...#EducateSesame #BoycottAutismSpeaksfacebook.com/boycottautismspeaksnow


Wednesday, May 7, 2014

Breaking the Cycle

In the autistic community we talk an awful lot about how it is simply not okay for parents to say "I hate autism" or "Autism sucks". We explain to people that autism is not something that can be separated from the person and that hating autism = hating the autistic person. There is always blow back. There is always some sort of  protest to this.  Parents claim it is okay for them to exclaim hate toward their child in this manner because their emotions are important, they get overwhelmed... it's all about the parents. 

Society even expects parents of disabled children to feel this way and say things of this nature. They feel "sorry" for parents of disabled children. Society extends pity and forgiveness when a parent to a disabled person does something heinous (like murder) or abusive.. because you know, we are so hard to love and care for. 

So, I don't even know why I was shocked yesterday when a mother of a child with Down's Syndrome said her daughter often says "Down's Syndrome sucks", and the mother encourages this talk because she says it's her child's "self expression". This person believes that this is actually her accepting her daughter. 

Image Description: Background is a blue faded into purple
text reads : If you tell your child
"Don't be mad at yourself, be mad at autism" or
"It's not you, it's autism" you are
teaching your child internalized ableism
eccentrickimmy1.blogspot.com 
Listen folks, children don't just decide one day to say these things, it is learned. A child's first exposure to ableism is usually from their very own parents. I can not tell you how many times I have heard parents confess that they actually say things like "It's not you, it's just your autism"  or " Don't be mad at your self, be mad at the autism". When parents say things of this nature to their children they are teaching them that their disability/neurological makeup is a separate entity from them. They are teaching them to hate and blame this part of them self. They are not promoting self expression or acceptance of self... they are helping promote self hatred. They are teaching their children internalized ableism.



This is a response I wrote on the particular thread I am speaking of... 


So, I am not going to be redundant because all of the points I would make are already written out... As an autistic parent to an autistic child I have one thing to add... My need for support will never ever trump my children's RIGHT to respect and privacy. 

Saying "I hate autism" or any variation of that is disrespectful to your child. 

I have personally heard these words said TO ME : "I love you but *insert whatever thing people hate*".. It screws with your self esteem,it causes internalized albeism.. It causes those "I hate this part of myself" or "this part of myself sucks" thoughts.

If your children are admitting they think a part of them sucks...as a parent you are responsible for helping them figure out it's not them or their neurology... if you do nothing to counteract that type of thinking in your children, you are contributing to it... you are allowing them to think they are a problem....


Of course,what followed my reply was disagreement, but there was also something I was not expecting, but further strengthens my stance that expressions of internalized ableism are first taught and encouraged by parents to their children:

interesting that asd somehow prevents you from hating parts of yourself that are causing you problems while the rest of the world is ok with that concept and we all realize we are not hating ourselves, but the things that we must work harder to deal with 



So, society expects me to hate parts of myself, and this person basically tells me it's okay to go ahead and hate a part of myself. 

What kind of a fucked up world are we living in when people advocate that it's okay to hate ANY part of yourself and that it's even expected of a disabled person to hate them self because they have challenges? Can people not fathom that one can have struggles and challenges in their life, while also completely accepting and loving them self? 

I have been down the road of deep self hatred, it's not pretty. I have felt like a burden, I have hated my self for existing, I have been told things I do or can not help make other people's lives harder. I have been told to try harder to not be so... so ME! 

I have scars I look at every day that remind me I have been in that place. I have lingering anxiety due to prolonged self hatred. I still struggle immensely with my self esteem. 2.5 years ago I was in the most deepest darkest place. I have worked hard to overcome much of that, really really hard.

So, for somebody (or society) to suggest that it is expected of me to hate myself or at least parts of myself, makes me want to RAGE. 

Engaging in this conversation yesterday completely validates what I have always thought, self hate and ableism do not naturally occur, it is learned... either by parents, society as a whole, schools, therapists, etc.... 

It's time we break this cycle. If you're a parent that curses your child's disability. STOP! If you are a parent who tells their child " It's not you, it's your autism"... STOP.

If you have a child that exclaims they hate their autism, it's your job as a parent to recognize that is a sign of self hatred and self esteem issues. It is a sign that something is very wrong and is your cue to teach your children how to reflect appropriately and figure out exactly what the root of the frustration is. It is absolutely, positively not okay to encourage self hatred. EVER. 

The ADA, enacted 24 years ago in 1990, states " Disability is a natural part of the human experience" but, yet here we are... living in a society that still sees disabled people as not human. 

As a parent or caregiver to disabled people it is your job to demand that the stigmatization and dehumanization of disabled people stop. 

As a parent/caregiver you are obligated to push the message of acceptance and inclusion in society. 

It is your duty to demand presumption of competence. 

It is your responsibility to fight like hell for the rights of disabled people, along side disabled people. 


Change doesn't happen over night. The more we expose society to disability, demand equality, debunk myths and stereotypes... the easier it will get for generations to come. It is up to us to break this terrible cycle.

Tuesday, February 18, 2014

Why I can't *LIKE* Happy Birthday Colin on Facebook

For the past week or so  I have been getting invitations, been tagged on facebook, and seen this thing on all of the popular pages I "like", with the exception of a few.

The thing? The facebook page "Happy Birthday Colin".

Reading about Colin very much reminds me of my own son, there are so many similarities. So why haven't I "liked" this page? Why haven't I said anything about it?

I wasn't going to make a post about this because I know when I am critical about things that make the majority feel good, I tend to piss off the masses. But, yesterday the Autism Society of America posted an article from Slate.com about this facebook page/cause. It was a bit critical, but still did not hit on the points I think are being missed. The article on Slate focused on the "no friends" aspect, which seems to be the thing that most are picking up on.

I understand the things this mother is experiencing. It is extremely heartbreaking to hear your child state he has no friends.

But,what most don't understand is there is ALWAYS more to "I don't have any friends" than a child just not being invited to be social or actually having no friends at all. It involves peers intentionally excluding a child from activities, which is a form of bullying. There is usually a good bit of teasing and picking on as well, which is also bullying. Bullying causes a lot of damage in the long and short term. Worst case scenario is death (typically by suicide)

My son was picked on, bullied, and triggered to react for others' pleasure.  Most of the time school administrators blamed my son, did nothing at all or punished him for his reactions when they did nothing to prevent or stop the bullying that was the cause of his reaction.

Oh! Well, there was one exception. In 6th grade, an administrator actually asked me if I would be okay with disclosing my son's diagnosis to children that wondered about him. My son did not want his disability disclosed at the time. I believe he has a right to his privacy which also includes his disability. So,I suggested  we could  facilitate a program on diversity instead. I was shot down. Apparently, invisible disabilities are not a diversity issue that needs to be talked about.

I was also rightfully afraid that if his disability was disclosed to others it would just be more fuel to the fire. I knew the school had no programs to help children (or adults for that matter) learn what diversity or an invisible disability was, so disclosure of his disability under circumstances where the majority was already ignorant would only hurt him.

I also did not want him to be pitied or have people befriend him simply due to his diagnosis. I didn't want my child to be like the autistic boy that Kathy Lee Gifford made cry on national television. I did not want him to be someone’s  inspiration porn or someone's way of getting a "good people" cookie. Those types of “friendships” hurt just as much as bullying because they are fake.

I also did not want him to hurt more than he already was. I wanted REAL solutions, not patches over the problems that he was having. I didn't want a few moments of happy followed by months and months of more grief. I wanted improvement over his entire situation... but I suppose that is too much like work for some people. It's not the kind of "cause" they want to take on and not many people do.


Nonconsensual Disclosure of Private Issues

I have a hard time being okay with a parent being extremely public about their child's disability without the consent of the child. Especially when the child is already a victim of bullying. There have been numerous news articles about Colin, some state his disabilities as Aspergers and SPD. His mother states that is incorrect, but that his disability is LIKE Aspergers and he has behavior problems. No matter the semantics of his disability, she has gone very very public with it. That makes me uncomfortable in ways that makes me want to take a scolding hot shower.




The page has almost 2 million likes. That's 2 million people who know Colin is disabled and is bullied. But, Colin has no idea his mom is putting his very personal information out there. I also highly doubt she understands that the repercussions of this could be really really bad for her son. I am so concerned this will increase the amount of bullying that is happening to Colin. I am so afraid that this will backfire on his mother.

I know how mean some children can be. “You suck so much your mom had to make a facebook page to get you friends” or phrases similar to this one come to mind. If it doesn’t happen immediately it will likely happen in the future. Things placed on the internet stay on the internet. This will not be erased and could potentially haunt this child for many years.

I am concerned that instead of focusing on the real problem at hand, his mom is just trying to "patch" it. I am so afraid that once Colin's 15 minutes of fame are up, he will be left exposed and vulnerable, with the same problems as before maybe even worse. It's a very real possibility, and I know my cynicism takes away the "feel good" of this story.


Bullying

One of the very first posts on this page told of how Colin is picked on and teased. His mom basically says he is a good little Christian boy because he begs the principal not to punish those that pick on him. While I think forgiveness is an awesome thing, it really disturbs me that her son is not wanting any action taken against his bullies. There can be many reasons a person may not want to have action taken against their abusers/bullies. Sometimes that forgiveness is genuine. But, when it’s an ongoing problem in someone’s life that leaves them friendless and lonely, it is rarely genuine "forgiveness" and more of a damaging coping mechanism.
Also, since he is very excluded he may be willing to take any kind of treatment in order to try to gain friendship, that's not healthy.

I have very forgiving children, I can understand how Colin's mom is so proud that her son can forgive. I am REALLY proud of that in mine too. I teach my children that it is really important to report bullying and abuse, even if they feel like they are able to handle the situation or can forgive. We have a responsibility to other people as well as ourselves to report every.single.time. Bullies rarely only target one person. I also teach my kids that bullies are people that need help too and that there is probably something going on with them that may cause them to be this way. So by reporting it, we are also accessing help for the bully. I certainly hope this is being taught to him as well.

I fear Colin doesn't understand that while it's okay to forgive, it's also not okay for people to be bullies and pick on others. I am afraid that the people who are supposed to be protecting him are not doing their job. I am afraid that he is not able to be upfront about everything that he really is going through because he may feel that in order to forgive,he has to endure the pain as well.  His mother claims she has taken action, I don't doubt that she has, but what about Colin's ability to speak up? How much of this is he internalizing? How much is he really enduring silently?


I remember when my own son was going through something similar. It got to the point where he trusted no one. When he'd come home from school he'd tell me about things and I'd ask if he told an adult. He'd say "There's no point they won't do anything about it". He was right, they rarely did anything about it and when they DID it turned around to bite him on the ass. He left public school at 13, he is nearly 16 now. It has taken us 2.5 years to build his trust back up and reteach self advocacy skills because people in charge at his prior placement did NOT see that is was important to protect him and take his claims seriously.

One last concern, how much of this facebook page thing is actually for Colin and how much is for his mother?

I’m sure it may make many very uncomfortable or angry that I am pointing out that the one time act of kindness is not going to help resolve much for Colin and could potentially harm him for years to come.

What he needs is adults in his life that are willing to take real action to help change his circumstances.

1.9 million facebook friends isn't going to fix or change that.

Thursday, February 13, 2014

#LoveNotFear When words fail, Music speaks





A lot of my feelings and emotions are expressed through music, especially when writing fails me. Not my own music, but others' and specifically music lyrics. 

I attempted to write 3 times on the #lovenotfear topic and the right words eluded me. 

So,I thought this would be a perfect time to share with others my way of expression, connection and special interest, while also promoting the #lovenotfear theme :) 





A Fine Frenzy's "Minnow and the Trout" speaks multitudes about how I feel. People are so scared of different, they fear it. Please don't fear difference.


"And I said, Please, I know that we're different
We were one cell in the sea in the beginning
And what we're made of was all the same once

We're not that different after all"










Bob Marley's "3 Little Birds" is one of my favorites as well. I think people over think and get scared. Or they are overwhelmed with fearful messages which leads to them being fearful too. 

There just are not enough positive messages out there in circulation to drown out the fearful ones. But, that message is out there. 
One of my hopes with the Boycott is that it will help get more positive messages out there about autism. 



"Don't Worry about a thing, cuz every little thing gonna be alright"





AWOLnation's "Kill your Heroes" because it pretty much says (to me) that we should kill those preconceived expectations so we can grow and we are not what others are, we are who we are. Oh and this:


 "Never let your fear decide your fate"





And how can I forget Imagine? Lennon sings "I hope some day you'll join us and the world will live as one" 

I believe once fear is put aside this will be possible, for people of all differences and neurologies to love and accept one another.

 "You may say I'm a dreamer" 






And if you're still set on being fearful and pushing your children to be normal instead of loving them for exactly who they are... Then this is the is the message you are sending:

Perfect by Alanis Morissette 

'We'll love you just the way you are, if you're perfect"