Thursday, December 31, 2015

Rambles About Another Year Gone By

Goodbye to 2015!

It has been a tumultuous year for me in so many very personal ways that I am not able divulge in a blog post because that process would require telling some stories that aren't mine to tell. (and it would also be way too complicated)

But, to sum it up, 2015 was a year that life as I know it changed forever. Life has a way of doing that, though... changing, that is. It's not the first time it has happened and I'm positive it will not be the last. I don't do so well with change. I know not many people do well with change, but it is especially hard for me and it takes me a very long time to adjust.

I pretty much found myself in a midlife crisis of sorts in the midst of all the chaos that surrounded me. I found the safety and security I thought I had finally found after so many years, disappearing. This brought about a lot of tears along with increasing depression and anxiety. This went on for almost the entire year.


So, when I look back on this past year I see a lot of hurt, but I also see a lot of support from people that care about me, too. This is so different from previous times when I have struggled, I believe this is why I was able to climb out of the pit of despair with next to no scars. The support was authentic and catered to my needs. No one told me to get over it. No one invalidated how I was feeling. Sometimes people didn't know what to say to me, BUT they were there to listen and they gave me time.

If you were one of those people... Thank you <3 You mean the world to me.

During 2015 I've also have done a great deal of introspection, along with recognizing where a lot of my issues come from.

For example :

Misogyny.

 I did not ever want to connect a lot of my issues with misogyny. In my mind that was implying that I was influenced by outside forces, that I was not a competent, free thinking individual and most importantly it would mean I was a victim. I don't like being the victim.

However, once I started to learn what feminism and the patriarchy was, the more I understood. I had deliberately stayed away from the term "Feminist", because it is considered a bad word to so many people. Besides, the only time I had ever really heard it before meeting so many wonderful Feminists was through sources that used words like "femi-nazi". To be frankly honest, the word "Feminist" scared me. But, once I figured out that feminism stood for everything in my life that I had ever said or spoke out on that other people told me I was sooo wrong about, I thought maybe there was so much more than I thought I knew... and there was.

The day that my daughter was told to call home from school for a dress code violation along with about 50 other girls in her school, I knew I could never not identify as a Feminist ever again. That was the day she was told by the asst. principal they were trying to protect her from the boys and that her body was a distraction. That was the day she stomped her foot and raised her voice and said very proudly "It's not the girls' FAULT, Teach boys to respect us".  I never want her voice to be silenced like my own was and I want far more for her than what society is offering her right now. One of my greatest fears is my daughter being abused in some way and believing that it was her fault. So, with that said...She needs me to be a Feminist and my boys need me to be a Feminist, too.




 text reads: "And the day came when the risk to
remain tight in a bud was more painful
than the risk it took to blossom.
-Anais Nin"
Text is on green textured
background with image
of a lotus bud.
(Image courtesy of Autism Women's Network)
I took the step of putting a tag line on my blog to signify the transformation I have undergone this year. It is the quote "And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom." by Anais Nin. I believe it fits quite nicely.

I've learned so much this year and I believe I know that is due to the wonderful connections I have been able to make because of my fellow mods at PACLA , AWN and the team at Boycott Autism Speaks. I feel totally empowered and some what in control of my own life because of them. I am a better person and parent because of them.

This year I've learned how to become even more comfortable with being uncomfortable when it comes to my own privilege. This means knowing my place and understanding when it's time to talk and when it's time to listen. 



And most importantly... I've learned that my heart always has room to love more people, even when it feels like it doesn't. In fact, I learned that my heart has infinite space.

I am ready for the New Year. My heart and my mind are wide open, ready to learn and love even more than the year before.

Wednesday, December 23, 2015

A Letter to the Editor of The Mighty

There has been much criticism about The Mighty within the Autistic and Disability communities. All of this came to a head on Sunday Decemeber 20th when The Mighty published an article called Meltdown BINGO that was making fun of the meltdowns Autistic people have. After a lot of blowback, they decided to remove the article and the next day published a note from the editor apologizing (in a kinda sorta way) and asking for feedback. So, I wrote to the editor and gave her my feedback. If you would like to write to the editor of The Mighty her email is megan@themighty.com

Below is my email. I'm sure I missed some points others may make, that is why it is important that people send in their own concerns to The Mighty. 


Dear Megan,


I would like to start of by introducing myself and telling you a bit about who I am. My name is Kim (on Facebook I am Kimberly Faith, on Twitter I am K1mmyR0cks and I blog at Eccentricities and Introspection on blogger). I am a 36 year old Autistic mother to 3 teenagers with my oldest being Autistic. I volunteer my time with Parenting Autistic Children with Love and Acceptance and Autism Women's Network . I am also one of the major players in the Boycott Autism Speaks movement.

I am invested in Neurodiversity, disability pride, authentic inclusion, presumption of competence, intersectional activism, youth rights and so much more. I am also one of the critics of The Mighty. 


When you published the article explaining why you removed the Meltdown BINGO article you asked for feedback. I really hope that was sincere, because I don't like to waste my time. I am not looking to be featured on your site, I am just looking to help you understand where you all get things so very wrong. It is going to be very hard to get every explanation you may need to fully understand the concepts I am going to touch on in this email, so please ask questions if you need to. 

 I've read your bio on the site and followed the link to the HuffPo post on you being a [good news] porn producer. One of the problems so many have with the mighty is the inspiration porn you produce. Inspiration porn is the objectification of disabled people to make nondisabled people feel good and The Mighty is loaded with it. Are you familiar with Stella Young's TED talk? (I'm sure you are to a certain degree) I'm going to link it here and I want you to seriously consider all the things she says in the video. If you don't have time to watch the video there is a transcript.

http://www.ted.com/.../stella_young_i_m_not.../transcript...

One thing I believe you are trying to do right is include disabled voices. However, you are choosing the voices that still fit your production of inspiration porn. That is not equally representative of the community and it does not help. In order to shift perspectives you're going to have to shake it up and get off the ableism fence.  You can't advocate for the rights, the acceptance and inclusion of disabled people while also giving a platform to ableism. There really is no balance where bigotry is concerned, no grey area. It really is very black and white even though many people have a hard time understanding what ableism really is and/or looks like since it is so prevalent in our daily lives.

I think those of you at The Mighty have a problem seeing the ableism so many of us see and this is why you need what I would consider more radical disabled people on board your team. It’s also very important that you understand that just because someone is a disabled person or parent doesn’t mean they can’t be ableist.

I think another major thing you could have great impact on is changing the narrative surrounding parenting disabled children. As of right now your site plays into the same old narratives as every other parent centric site. Currently the narrative is doom/gloom, pity and martyrdom.


Parenting is super hard. I think it's the hardest job I'll ever have and I would never deny that it is challenging.  I've participated in many online and in person support groups for parents of disabled children and no matter how positive the environment is supposed to be, the same narratives apply and like I said, The Mighty is no exception.

I believe with all of my being that parents need and deserve support. But, they deserve the right type of support and I don't think many parents even know what that looks like. Toxic support is rampant in the disability community and it feels so darn good many don't even see the toxicity. It's akin to an AA meeting being held in a bar where everyone is ordering drinks while talking about their addiction to alcohol and how they really want to get sober but... and the members of the AA group give hugs and tell each other that it's okay it's just too hard. I mean, sure, those people in that AA group feel supported and it feels good, but the outcome of that support is not a positive one. Same applies to the *woe as me* support groups for parents.

Parents of disabled children are often allowed to get away with saying and doing some of the most heinous things because society refuses to tell them they are wrong. The support community built around parenting disabled kids tells everyone that we should never judge a fellow parent because it's just *so hard* This is dangerous. It really is important that someone stand up and tell them they are wrong. Someone has to stand up for the children, but many won’t.

Some other things I've noticed in these toxic support environments is that it is so very rare that anyone wants to learn anything. I've seen the same whining and complaining over and over from the SAME parents that never take any solutions and want to learn nothing. They don't care about their child's dignity or how to help them, they only want pity.

Your site perpetuates ALL those things.

There is a way to write about parenting disabled children without sacrificing the dignity of the child. I think one of the things The Mighty should start focusing on is the fact that parenting isn’t about parents, but it’s about the children we are supposed to be supporting. All too often parents take everything so personally and/or make their child’s struggles about them. I wrote a bit about that here if you’d like to further explore what I am talking about.

I think another thing that would be super important for you to do is to start touching on how parents help their children to internalize ableism. I also wrote a little bit about that HERE if you care to take a look.

You have a huge platform, one that could potentially change so much. So why would you want to be just like every other site out there? Is the popularity worth disabled people’s humanity? Because that is the cost.
text reads You have a huge platform, one that could potentially change so much.
So why would you want to be just like every other site out there?
Is the popularity worth disabled people’s humanity?
Because that is the cost.
background a dark red textured one


I will leave you with a few sites and bloggers you can look into for guidance.


Parenting Autistic Children with Love and Acceptance (a community)
Autism Women’s Network (a nonprofit)
Autism and Neurodiversity in the Classroom (a community)
The Autistic Self Advocacy Network (A nonprofit)
Nonspeaking Autistic Speaking (links to all the blogs Amy Sequenzia has written)
Thirty Days of Autism (A blog by Leah Kelley)
Unstrange Mind (A blog by Sparrow Jones)
We are Like Your Child (a blog with various disabled writers)
Respectfully Connected (a blog)
We Always liked Picasso Anyway (A blog by Lei Wiley-Mydske)
Radical Neurodivergence Speaking (A blog by Kassiane Sibley)
The Giraffe Party (A blog by Jennifer Muzquiz)

Neurocosmopolitanism (blog by Nick Walker)
Ollibean (a community)

And so many more that I am probably forgetting. If you want to get a more extensive list you can reference this list on PACLA’s blog. You can also follow the AWN FB page, it is updated nearly every day with posts from various people.

I sincerely hope you are really ready to make a change.

Thank you for your time,

Kim



You can find my Follow Up On this HERE

Friday, November 6, 2015

To Whom it May Concern: On School Dress Codes

There are so many problems with school enforced dress codes and how they are implemented. I've always known this. I've never had to deal with much of anything regarding dress code violations with my boys other than they forgot their belt. My daughter and other girls at her school are policed every single day, even with a uniform policy in place.

What prompted me to write this letter (which I did send) was a special once a month thing the district has called "Dress for Success" which requires kids to dress professionally and perhaps be chosen to be given job interviews.

There is obviously other things wrong with this other than the blatant sexism outlined here, like how it's classist and how the guidelines are not really professional but more like conservative dress. But the biggest issue is absolutely the sexism. 




To the Administrators and Superintendent :


I am writing to you today to speak with you about the Dress For Success day that the district has implemented on a monthly basis and some other concerns surrounding the dress code. My daughter is a student at your Middle School. She’s never been in trouble and is greatly loved by her teachers. I also have 2 other children, both boys, that attend the High School. My daughter has always enjoyed participating in all the extra activities that happen at school and she was extremely excited about Dress for Success.


I was called by my daughter on Thursday morning (11/5/2015) to bring her change of clothes because she was told her outfit violated the dress code. She told me that in the meantime she was sent to ISI to wait on me. She was not the only girl sent to ISI on this occasion, as a matter of fact many female students were sent. She was told by the attendance officer she had to go to ISI, not because she was “bad” but so the boys wouldn’t mess with her. When I arrived with new clothes I was told those wouldn’t work either. I was told to bring her school uniform instead. The Asst. principal told me that they were worried about “the boys” messing with the girls as her reasoning for policing the girls’ clothing so closely.


I must also mention, my daughter had been out 4 days prior because she had been very sick, so we did not know about the newly imposed rules for Dress for Success. If we had, I would have gladly had her comply because I don’t like making things hard on her. But, I still would have said something about the rules because there is so much wrong with them and the way they are enforced.


Dress codes in schools are almost always geared toward female students and imply things that administrators and faculty sometimes don’t see. I honestly don’t think anything but good intentions were in mind when creating and enforcing both the district dress code and the dress code for Dress for Success. However, even the best of intentions can cause harm.


I would first like to take the time to explain to you the problems with the way the dress code is enforced.


I know in the past female students at your middle school have been addressed for their clothes “not fitting right” (A.K.A clothes that show their natural female shape). I know female students have been targeted for wearing “skinny” pants or pants that someone considers too tight in the thighs or in the butt. This is shaming girls for their naturally developing bodies. This is teaching them that their bodies are a distraction. This is telling them that their bodies are wrong. This is also sending the message to all students that respectability is tied into the clothes we wear, which couldn’t be further from the truth. All human beings deserve respect and the length of someone’s skirt should not dictate that.


Middle school is about the time that girls’ bodies start to change. Many girls are already self conscious about it without the adults they look to for guidance telling them they should be even MORE self conscious. When adults start singling out female students for dress code violations they are sending a message to the entire student body that a female student’s education is secondary to the way she is dressed. This teaches boys that their female classmates are not their equals and are in fact sexual objects.This sexualization of women’s bodies is so normalized in our society many don’t even recognize it and how dangerous it actually can be. This is the same frame of mind that allows people to blame women and girls for any sexual harassment, rape and other types of abuse they may encounter because they could have avoided it if they just would have:


Worn a longer skirt Worn a higher neckline Not worn high heel shoes Worn looser garments Just not been so distracting to the opposite sex


This is essentially what was told to my daughter when the attendance officer told her she was being sent to ISI because her skirt was too short and they didn’t want boys messing with her. Similarly so when the asst. principal told me she was worried about the boys as her reason for wanting my daughter to change for a second time.


You can not teach boys to respect girls as equals by telling girls they need to wear longer skirts, higher necklines, lower heels or looser clothes so the boys don’t mess with them. When you do this you are connecting respectability with clothing choices and teaching boys that sometimes girls are “asking for it”. As adults we are responsible for planting seeds in our children and we should be particularly careful about which seeds we decide to plant. It is important that everyone understands that no one can be forced to harass or abuse anyone just because of the way they dress or look. The responsibility always lies with the offender, not the victim when abuse occurs.


I would also like to point out there has never been any connection between the way women dress and the lowering (or increase) of sexual violence of any kind.


Moving on to specifically address the dress code that was implemented for Dress For Success:


The list I was given with guidelines for dress had 2 separate lists. One that had 12 rules for girls and one that had 7 rules for boys. The majority of the students cited with dress code violations on the morning of 11/5 were female. This means more female students than male students were taken out of class and denied an education until the “problem” was resolved to the satisfaction of the administrator. I’m not sure if you are aware but having a dress code that is gender specific (one set of rules for girls and one set of rules for boys) is actually a civil rights violation under Title IX. You can’t show differential treatment to ANY student based on that student's sex and this is absolutely what the guidelines for Dress for Success do. You would have better fared with a gender neutral dress code.


Furthermore, requiring children to dress according to stereotypical sex roles (girls dress in “girl” clothes and boys dress in “boy” clothes) is highly discriminatory to the students that are LGBT and/or do not subscribe sex stereotypes. In 2014 the DOE released a memo addressing how Title IX also applies to transgender students. The memo states in part “[a]ll students, including transgender students and students who do not conform to sex stereotypes, are protected from sex-based discrimination under Title IX.” The way the gendered dress code for Dress for Success is written, it makes it to where students who are transgender or those who are gender nonconforming can not participate in this event because the dress code is based on gender binarism and therefore is discriminatory.


It is also a direct violation of all students’ first amendment rights.


I’m not asking you to abolish the dress code, although that would be nice. I am asking you to be more inclusive with it by making it gender neutral, where the same rules of dress apply to all. I am also asking that you stop telling girls they need to dress a certain way in order to not be harassed by their male classmates and stop teaching boys that the way a girl is dressed is more important than her education.


I am hoping that the greatness I believe is in this district will prevail. However, if the dress code for Dress for Success is not amended to reflect gender neutral guidelines and/or if students belonging to marginalized groups (female and LGBT) continue to be discriminated against and shamed, I will have no other choice than to file a complaint with the appropriate organization.


I am willing to discuss these concerns with anyone who needs to discuss them with me, unfortunately I am unable to take any phone calls that pertain to these concerns and will have to rely on email or regular mail for discussions to occur


Thank you.


This is a scan of the professional dress code they sent home. The first list says Ladies: Dresses/Skirts: High Neckline on dresses, Skirts must be knee length (no slits or cuts down the side), Not Tight (no spandex or stretchy material) Not Sleeveless. Shirts: High neckline, No undergarments showing (not see through), Appropriate Length. Pants: Appropriate length and fit (no leggings), No bright colors Shoes: No more than 1 inch heel No boots or tennis shoes (sandals are okay) Hair Neatly groomed and cut The next list reads Gentlemen: Shirts: Collared Polo, Button down (must have a tie) Pants: Khaki, Dark (brown, blue or black) Shoes : Dress (brown or black) No boots or tennis shoes Hair: Neatly groomed and cut

Monday, August 17, 2015

Our House

I was banned for 24 hrs from Facebook on 8/14/15 for a comment I made on 8/3/15 on a page I help moderate. I'm not so much angry about being on a temporary ban because I've been banned and blocked from various sites/groups/forums across the internet so I'm used to it. I'm pretty outspoken and much of the time pretty blunt. I make people upset, I get that.

What does bother me is the reason why I was temporarily banned. It's the principle behind it. I was defending an Autistic community member from someone who was being abusive and the person I called out just didn't like it... so they reported it. (presumably multiple times, given how long it took for FB to act)


The Facebook community I help moderate has a little over 25k followers and is called Parenting Autistic Children with Love and Acceptance (PACLA) Despite the word parenting in the title of this community, it is not a parent support page, but an intentional community that provides an Autistic safe space in order to help parents connect with and learn from Autistic people.

Since PACLA is considered an Autistic safe space, we have guidelines for our community members to follow and frankly we are not very forgiving on those who break these guidelines. Yes, I know that just makes us horrible.

Only it doesn't.

We have a duty to protect our Autistic community members over the feelings of nonautistic and/or ableist people. Even if the offending comment is unintentional! As a moderator I am going to protect the Autistic safe space we promise over sparing the feelings of those being ableist.

Something else that so many don't get...

We don't have to be anyone's teachable moment, but some people are always demanding we put aside our right to be seen as humans that deserve respect and dignity to teach.them.a.thing. These people, many of them parents, don't like being reminded that we are not a resource, but a group of people... really real human being type people.



Okay... SO.... on to what got me banned:

On August 3 I posted a screenshot from a nonspeaking community member (and friend of mine) where she was telling FB land about how someone spoke about her, in front of her, to her mother like she wasn't even there.

Below is the screen shot and in the caption there is a link to the post.


Link to post HERE
Screenshot reads: Dear random person who asked my mom at Whole Foods today if I was autistic... then replied with, "My son is low-functioning autistic too. It's so HARD some days, isn't it?" :
How dare you speak about an autistic person right in front of them!
I may not speak, but I can hear, and I fully understand what you are implying, fucking jerk. And how dare you assume things about my intelligence and support needs. You don't even know me or anything about my life. My life as an autistic person is awesome. Yes, it's incredibly hard at times, but it's hard because of ignorant people like you. Sincerely,Me
Immediately after this was posted many people honed in on the other mom, had sympathy for her and went on to police the feelings and language of the person who was hurt in this situation. Several people told this person to take it as a teachable moment and tried to 'splain the thing to her. They were completely dismissive of the obvious hurt this person experienced. They claimed she was too hostile to be heard. This happens all the time and not just on the internet. It is a problem.

The person who wrote this post originally wanted to be anon, but then they let the commenters know who they were. I was thinking "Oh good now maybe they'll see this person as... you know... a person" but I was   W-R-O-N-G.

One commenter decided to continued on taunting the person who wrote the above with a passive aggressive tirade to intentionally upset them.  It was like they were poking her with a sharp stick while saying "That doesn't hurt, you're being too sensitive". All the original comments from that person are gone because I am assuming the person deleted their bullshit before they reported my comment to FB. (my comment below)

Screenshot from FB mobile. It reads: We removed something you posted. We removed the post below because it doesn't follow the facebook community standards : Carson does it feel good to attack someone who was already a victim? You're being passive aggressive, which is an abusers tactic..goodbye



So you can see now why I was/am upset that I was banned for 24 hrs, seeing that my comment is pretty much saying "Hey don't be abusive".

I have repeatedly reported things on facebook that were clearly racist, criminal, sexist, ableist, pedophilic, etc... and FB would refuse to take them down. But, let me or anyone else call out abuse and OMG... facebook jail.


This is not the first time that I've seen this happen. I had one friend that helps moderate another page with me get banned for 24 hrs because she told someone it wasn't okay to be racist. Another moderator from PACLA was temporarily banned for telling someone to knock it off , in a similar situation. 


This is more about lack of respect and double standards than it is a FB ban.

There seems to always be a large portion of people that want us to be their teachable moment, but when we actually are teaching, they run off crying that the big bad Autistic people hurted their wittle fweelings. They cry victim.

So it seems to me, many only want us to be their teachable moments when/if it makes them feel good or suits them. 



So, what can you do to make things better? 

Here are a few things you can do to be a better person and help us out.

1. Understand it's not about you. Parents, you can start with understanding that parenting is not about you. All others need to understand our disabilities are not something we do to you. Our disabilities are about us and we are the experts on ourselves and our disabilities. We are allowed to tell people when they do things that hurt us or are discriminating towards us.

2. You have to understand being disabled makes us part of a marginalized group. Did you know: Disabled people make up the largest minority group in the US? That's right, 19% of our population is disabled, world wide the percentage is a bit smaller at 15% . With such a large number you'd think that people would be more accepting and accommodating, but they're not. Understand that we face huge barriers and discrimination (called ableism) often Listen to us when we tell you about those things. Believe us.

3.You must also understand that the fights we fight today will help future generations. We are working towards equal rights, even when (especially when) we're telling you you're wrong. You should learn how to be an ally to the disability rights movement. You can start here and you can move on from there to here to learn a bit about being an ally.

4. Stop policing our tone, our words, and our emotions because they make you uncomfortable. Stop telling us if we were just nicer you'd treat us like human beings. Stop explaining and justifying the discrimination we experience. When you are doing this, you are not helping us. You are not being an ally.

5. Be respectful, learn to listen and practice patience. When you come to our spaces to learn from us you don't get to t
ell us how to teach you or what we should be teaching. You don't get to tell us there is no reason for us to be angry. And you don't get to make it about you.  
Image description: Rainbow diagonal stripes with white text that reads:
 "Remember: The way you treat Autistic adults now is how
ou are telling the world to treat your own Autistic children."
Red colored heart at center bottom of image.

Remember: The way you treat Autistic adults today is how you want the world to treat your Autistic children. When you mistreat Autistic adults, you are giving the world permission to mistreat your child. When you bully us, you are essentially saying it's okay for others to bully your children. 

We don't hold anyone hostage in our space. People are free to go at any time if/when they disagree with our intentions. So, if the community is not for you, do the respectful thing and just leave.

Don't stick around and be disrespectful just because we refuse to make it all about you and your feelings. Don't hang around to tell us to play nice with you while you stomp all over our humanity. Understand, if you decide to do those things, you don't get to cry victim when you are called out on your disrespect.

You wouldn't go to someone's house and demand they rearrange everything in there to suit your tastes because it's known and accepted as rude...

So don't come to our house (communities/spaces) demanding we knock down walls because you're uncomfortable, it's just as rude.

Our house, our rules.

Monday, July 27, 2015

Parenting: Not About Me & Not About You

In 2012, after getting my son out of a horrible school situation and into a better placement, someone wanted me to co-author a book with them about the journey that got him there (which was a ridiculous and tedious one).

I thought about it. I was excited about the idea. I really wanted to do it. 


BUT, and this is a big but, it was not my story to tell. I came to the conclusion that: Yes I was/am involved, but the biggest part of this story is my son's and I don't have the right to tell it for him.

Another thing though, the things I did for my son? I considered it doing what I was supposed to do as a parent, I didn't see it as a heroic act or something that was just an obligation. It was doing the job I signed up for.    


People have often congratulated me for his successes. I have often commented back "He did all the work, I just kicked down a few doors when people closed them on him, but he was the one that went through them".

In other words, I helped my son gain access to the things he needed in order to be successful... and isn't that part of parenting? Ensuring our kids are able to succeed?

To me, congratulating me for parenting in this aspect is the same as telling me "Good job for feeding your kids every day" It's just not necessary.


I've never been comfortable with getting praise for doing what I'm supposed to as a parent. I've also never been comfortable with getting pity for being a parent to a Disabled child or with people giving me credit for my children's successes.

When I'm bragging about any of my children or just catching you up on them the very last thing I want to hear is "You've done so well with them".  When people do this to me they steal away my happy and frustrate me to no end.

I use to think that this frustrated me because of my inability to take a compliment and the fact that I'm pretty skeptical of people's motives, but then I realized that was not it. This was part of something much bigger and actually not about me at all.

The problem lies in people's inability to understand that parenting is about the children, not the parents. That's right parents IT'S NOT ABOUT YOU.

The things my children accomplish and even the things they have a hard time with? NOT ABOUT ME. 


I realize that when my kids are having a rough time, it's not about me. It's not something they are deliberately doing to me to make my life hard. I understand in these times they need me to support them, guide them, teach them, and you know parent them.

So many times I read/hear how I shouldn't judge another parent, especially a "special needs" parent. People are so afraid to tell them that their child's struggles are not about them. People are more concerned about how the parent feels than the welfare and dignity of the child. 


In the more mainstream "autism parent" community parents get credit for so many things their kids actually accomplish.

Johnny said a complete sentence? Good job Mom!
Jane tried a new food? WTG mom! you're so awesome!

They also get deemed saints and heroes for just being parents and allowing their children to exist, as if being a crappy parent is far more acceptable when you have an Autistic child. (actually abuse towards disabled children is often excused)

Then you have the really ugly stuff:

If their kids are having a hard time, the parents talk about how frustrated they are and make all their children's struggles about them.

On Facebook I had this local "friend" who would constantly detail her teenager's meltdowns and talk about how horrible she was over and over...........and over. The worst part about it was, her daughter was friends with her on Facebook, so she could see all the things her mom and her mom's friend's said about her. She even wrote about how the child screamed out to God to make her not be bad anymore <~~~ that's a warning sign of internalized ableism 

I offered advice to her on more than one occasion and even offered to come get to know her daughter and try to help her figure out what was going on. For nearly 2 years this went on and the mother never stop complaining and never once took any advice.

Some people would call that seeking support (some even call it spreading "awareness").  I call it what it is, direct disrespect of another human being and a pity party. 
It's exploitation of a child for the purpose of the parent's "support".

She was making her daughter's hard times all about her. And technically they really were all about her (the parent), in the sense that she was likely the cause of most of her child's issues. But, if I had told her that, I would have been judging her and she still wouldn't have listened.

Every time I saw one of her posts I felt like I was watching the next Kelli Stapleton and there was nothing I could do, but I digress.

Parents even create Facebook fan pages that anyone can like and see. They post pictures and private details about their children. If they are called out about this being a violation of privacy for the child and not to mention a huge safety issue, parents get defensive.

Once again they make it all about them.

Parents: It's not about us, this is about our children, their lives, their well being, their futures. We don't own our children. We don't have the right to expose their private moments publicly because we need to "vent".
Parenting is about selflessness and unconditional love towards out children
It's about comforting and protecting our children.
It's about guiding them. It's about teaching them compassion and
 respect by giving it to them. 
It's about opening doors and
 giving our kids the chance to choose to walk through them or not.
Image background is a tree shaped like a heart it is pink in color
below the tree are some fallen leaves, also pink


Parenting is about selflessness and unconditional love towards our 
children. It's about comforting and protecting our children. It's about guiding them. It's about teaching them compassion and respect by giving it to them. 

It's about opening doors and giving our kids the chance to choose to walk through them or not.

My parenting journey? It's not about me. And yours? Not about you either.

Wednesday, July 15, 2015

Why I #Boycottautismspeaks: Perpetual Hate

I've done quite a few pieces on why I #BoycottAutismSpeaks

I've written plainly about Why
I've written about how they use token Autistics for damage control
I've written about lies about funds to my state
I've written to the sponsors outlining all these reasons


Most recently there was an article in People magazine featuring Bob and Suzanne Wright calling the heroes. the title of the article was "Crusading against Autism" with a subtitle of Suzanne saying they gave a voice to a voiceless community. Claiming we are a voiceless community is about as ridiculous as it gets, but being extreme and fearmongering is how the Wrights make their money, it's their marketing style. You can view the article HERE


I don't want to focus so much about the Wrights or that article though. I want to talk about the things people have said  that have been perpetuated by the messages Autism Speaks has sent out. I'm not sure if it's pure hate or just a lack of understanding because of the picture AS has painted of autism. It's probably a bit of both after all hate is usually fueled by a great deal of ignorance (willful or not).

Below are just two very mild examples of the type of comments commonly heard:



Image is a screenshot of an inbox text reads It looks like more hate is being spewed by a
blog like this than anything coming out of AS.
Dividing the autism community seems like a poor way to get your point across.
The first screenshot shows exactly what parents say to us all the time. I know this person is a parent because they left a link to their site. 

We are told we should not stand up for our selves and that WE are responsible for the division.

They have had the message sent to them that their voices matter more than actually Autistic people's voices do and we are bad bad bad for pointing out the unfairness in their strategies. Blaming the victim is a way of silencing the person and controlling the situation. It is abuse and it is perpetuated by Autism Speaks.



        
Image in a screen shot of an inbox text readsHey, why are you mildly autistic people want special treatment
so the profound autistic people are suffering so bad.
Besides, therapy and other treatment will reduce your suffering
of your autism and you people, grow some backbone or something.
I #BoycottAutismSpeaks because Autism Speaks allows people to abuse Autistic people in more ways than one.

The second screenshot is a little hard to understand but the jest of it is clear enough. This person thinks that since we are proud of who we are, demand respect, can type on the internet that our disability MUST BE "MILD". But they also cite we are suffering? *shakes head*  Yes we suffer, from society's ignorance and unwillingness to accept us.

It is a misconception that people who are significantly disabled can not have happy and fulfilling lives, be proud of who they are and actually protest against hate. Autism Speaks is largely responsible for this stereotype through their marketing and advertising.

I'm not sure what special treatment this person is referring to... I supposed wanting to be treated as a human being is special treatment.


If Autism Speaks actually included Autistic people in their organization and listened to them they would know what we really need and how we actually feel. They would understand the problems we truly face instead of seeing us as a problem.

 I guess feeling proud while asking for supports seems to be something that no one wants to promote. You don't have to dehumanize a group of people just to get them supports. However, Autism Speaks isn't interested in getting us appropriate supports, they are more concerned with exploiting us and making money. 


Autism Speaks has the PERFECT (very large) platform to help on a number of issues facing the Autistic community but yet they continue to work against us claiming us to be voiceless when in fact they are just NOT LISTENING. 

Sunday, July 12, 2015

Allies : Are You Hurting Us Or Helping Us?

Originally posted to Autism Women's Network

I’m tired.
I’m tired of being told how I should and should not do activism. I’m tired of feeling like someone is always working against me when they claim to be working with me.
My entire life I have been told I’m not doing things right, need to do more and/or try harder , but I don’t put up with it anymore and I won’t put up with it in my activism either.
Allies are a super important factor to any civil rights movement. We need allies because the fact is some people won’t listen to us, but they will listen to the same message from a person of privilege.

Image description text reads: “Constant pressure to perform in ways that we really are not able to is not only unfair to us, it is discriminatory and oppressive” autismwomensnetwork.org — The image background is square with a light blue center and fades out into white.
My favorite article on being an ally comes from the ASAN website and is written by Kassiane Sibley which you can read HERE. She admits being an ally is hard work and that we expect a lot out of our allies, which is very true.
She points out something I wish to expand on: Being an ally is not a conditional thing,  I’ve seen people who are supposed to be our allies and claim to be intersectional activists call out Disabled people and disability organizations that are ran by Disabled people because they didn’t *jump* fast enough for XYZ issue.

Continue reading HERE

Wednesday, May 13, 2015

I Deserve That: Acceptance, Love and Self-Care ‪#‎AutismPositivity2015‬

This is a submission for the 4th Annual Autism Postivity Flashblog, the theme for this year is Acceptance, Love and Self-Care. 



Text reads The Autism Positivity Project perspectives of hope, encouragement, understanding and pride. Back ground is divided into four brightly colored sections each with a silhouette of a brightly colored hand 

I was diagnosed in June of 2013. One of the things the psychologist who was doing my testing asked was "Why did I suspect I was Autistic?"

I told her that it was my husband who first brought it to my attention and after that I started really digging in. I started adjusting things for myself in the same ways I had adjusted them for my son and it worked for me.

I will have to admit though, accepting that I needed adjustments and accommodations in my life was hard. It wasn't because I was ashamed, it's just my whole life I had it drilled into my head "If you try harder you'll do better". I was told that I needed to just get over the things that really impacted me (change in routine, unexpected visits from people, sensory aversions, anxiety, my misophonia, my depression).

I even had people use certain things that truly hurt me to their advantage, for entertainment... to get a laugh. (mainly my dad and grandfather). 

My husband had deemed me a control freak for so many years and he would deliberately do things that left me in the state of perpetual meltdowns and panic attacks because... who knows why. (no, he doesn't do that anymore)

So, for the majority of my life the people who were supposed to be my support made my life extremely hard and that caused me to have a great deal of internalized ableism. My self esteem dropped to nearly nothing and I thought I didn't deserve anything...

I didn't deserve to draw boundaries
I didn't deserve to be happy
I didn't deserve a break.
I didn't deserve to ask for and receive help.

So acceptance of myself, my limitations and the fact that I really did deserve all the things that I felt I didn't, has been hard. I have a lot of guilt about a lot of the things that I need to have in my everyday life in order for me to be functional, but I am working on that.

Self love is something I am also working on, you can't fully accept yourself if you don't first love yourself.

Loving myself means saying no when I really can't do something (or even when I don't want to do something).

Loving myself includes asking for the help and understanding that I do deserve to receive help.

Loving myself also involves allowing myself to be happy, drawing boundaries, and knowing I deserve to be able to take time to care for myself.

I give my all in everything I do. I'm a perfectionist (with very horrible anxiety). I am a protector of others and have been my whole life (that's one of the things that can happen when you grow up in an alcoholic home). I am a justice seeker and I become very upset when I see or read about injustices.

So for me, self care is unplugging from social media sometimes.
It is not reading the news.
It is asking others to not to start conversations about current social issues with me when I'm engaging in self care.
It's taking long walks.
It's asking for no one to knock on my bedroom door while I do yoga sometimes in the evenings.
It's getting myself a frozen coffee (I have issues with food, so this is a big thing.. and I love coffee)
It's understanding that I am an introvert and I need a lot of downtime in order to recharge.
It's blaring music in the living room and dancing about when no one is home.
It's practicing not feeling guilty.
Text reads Acceptance, love and self care: I deserve that.
Image is a fair skinned brunette female with a yellow flower
behind her ear and a brightly colored bag on her shoulder.
 Behind her is a hiking trail and lots of trees.



I use to do some of those things and would justify it by saying "I am a mother and I deserve some downtime so I can be the best I can for my kids"

But now I am learning to say "I am a human being and I deserve that" No justification required.




Thursday, April 9, 2015

The Business of Breaking Children

I spent some time with a friend one evening this week and one of the conversations we had surrounding her preschooler brought back so many memories of when my oldest child started school.

My friend's child is vibrant, energetic, and brilliant. Her mind and body are very active and always running. She is all smiles and giggles. She is just an absolutely beautiful 4 yr. old child.

My friend was showing me her daughter's school communication folder and I read some of the notes written about her child from the teacher. I recognized so many of the comments because I had read similar notes before with my own child just 12 years ago when he started school.

As I moved through some of the comments while looking at the green, yellow and red dots in her folder, I became very sad. I told my friend


  "They are going to try to break her." 

My friend responded with a sarcastic tone


"I know, she's not a good little solider". 

This child's parents also believe the teacher has already labeled their daughter as one of the "problem students", which is something I became painfully aware of myself as my own son journeyed through his elementary years.

My heart hurts to know there are children that enter into our public school system only to have their smiles stolen, their spirits broken, and their self esteem stripped away. It's so painful to know that the main focus for these particular children will be their "behavior" and how they are not fitting into neat little boxes, instead of how to best support, accept and teach them.

Tears well up in my eyes to know they will be constantly told the way they are is not the way they should be, when there is absolutely nothing wrong with the way they are to begin with.

I have written about the fear of breaking my own son and vowing never to intentionally do so. I have seen the damage this can do to a child with my own son. I've shared numerous dialogues with many others who have witnessed or been through this same thing.

When your child is labeled the "problem child" in education, whether or not they are disabled, they are put under a microscope. Every.little.thing. is noticed. They get blamed for everything that goes wrong in an environment regardless if they did it or not.

Eventually (and rather quickly) other students catch on to this as well and tend to feed the fire the teacher started. It's bullying perpetuated by adults, even though it's not seen this way because it's totally acceptable in society to treat *those* kids this way.


Unfortunately, I am aware of extreme disciplinary actions that tend to go with this territory: the referrals for petty things, the suspensions for nonviolent infractions (like not wearing a belt *gasp* OH! The horror!!! ), the phone calls, the conferences and even the threats of alternative learning placements for kids with "behavioral issues".  I know how things can get worse when you refuse to *prove* to the school that you're parenting the way they think you should.

I've often felt like (and still feel) if I reported back to teachers that I completely humiliated my child by doing things that would cause long term damage, they would be satisfied. Satisfied, because then my child would be broken. After all, it's much easier to manipulate broken pieces.

It's like this: It's pretty easy to break a square and put it back together as a triangle, only you'd have a piece missing. In children that piece represents their spirit, which includes : creativity, self esteem, and individuality. 
Image is a comic strip with three sections side by side. The first section shows a dark skinned female teacher in from of a classroom full of triangles meant to represent students and one square. The speech bubble above her head reads "Johnny Square you are inappropriate, come here this instant" The second section shows the teacher knocking the top line of the square out with her hand, and those pieces falling , the speech bubble reads "There this should fix the problem" The third section shows the teacher standing beside a now cracked triangle that has the speech bubble *sniff* above it signifying sadness, to the left of the triangle on the floor are 3 straight lines scattered with RIP Johnny's spirit written above it The speech bubble above the teachers head reads "Much better. You may return to your seat now Johnny.

These little squares are the kids deemed: defiant, noncompliant, oppositional, and just BAD. But, these are not violent, dangerous children I'm speaking of. These are the kids that go against the grain, they challenge authority, they think for them self, they know how to say "No", and they ask questions.

Maybe they have trouble sitting still, talk too much, have trouble focusing, day dream, don't talk enough, get bored quickly, or struggle in certain areas significantly and soar in others. 


Perhaps they are extremely sensitive, they refuse to do things before they are ready to, they don't show their work, they see busy work as ridiculous but they pass all the tests.

But, most importantly they refuse to conform just to make someone else's job easy. Because let's face it, that's what compliance is about in school. We're fed the lie that it is to get them ready for the real world. However, the real world is nothing like school.



If you're a teacher reading this, please understand... I know your job is hard, I couldn't do it. You became a teacher to teach, not wade through the bureaucratic bullshit that gets in the way of you teaching what needs to be taught. 

You have little support sometimes from your own administration, you are bound by federal and state mandates to teach things a certain way, in a certain amount of time. You're forced to shove standardized testing prep down our children's throats when you'd rather be teaching them applicable skills.
 

I know.

So, in order to do the job the government demands from you, you have to demand our children be, as my friend stated, good little soldiers.

My friend and I both agree... All we want is for our children to be HAPPY, successful and left unbroken. And we ask, how? Is that even possible anymore in public education? I'm not even sure.

Thursday, April 2, 2015

Are You Aware?

Today is “World Autism Awareness Day” and this month is “Autism Awareness Month”. I am not, even in the slightest way, excited about this. 

Seeing all that blue makes me ill.

Reading stories from parents who have nothing better to do than to whine, complain, humiliate their kids to garner sympathy and twist the words of neurodiversity activists is beyond anything I can take.

Of course, April isn’t the only time these things are present, but it is a time where it is the most concentrated because parents have a special month all to themselves.

Wait! What? Autism Awareness Month is for parents?

You may be thinking “Well I thought Autism Awareness was for Autistic people, you know those who actually are Autistic”

Well, you would think that a month dedicated to the "awareness"  of a certain group of people would actually be for them. You would think that those people might even benefit from the "awareness."

That type of logical thinking will get you nowhere with “autism parents”  though,  because autism awareness is anything but about Autistic people.

Autism Awareness is about how hard the lives of autism parents are.

Autism Awareness is about how broken Autistic people are.

Last year Autistic activist Amy Sequenzia penned the tongue in cheek piece "April is Autism Speaks Awareness Month" where she describes a pseudo-disorder called "Autism Speaks Rhetoric Disorder" (ASRD). Amy lists the symptoms of ASRD as:

  • People who contract ASRD will begin giving a lot of money to Autism Speaks walks that lead to nowhere; 
  • They will have a fascination for blue lights and puzzle pieces, believing these symbols help Autistic people; 
  • They will slowly lose their ability to question absurd claims that do not have much in common with the reality of their lives and with who their child really is; 
  • They will become so lost in the symptoms of this terrible disorder that they will not notice that not even one of the promises of help from Autism Speaks has been fulfilled;
Amy goes on to list more Characteristics:

  • The one characteristic that makes ASRD so tragic is the fact that many parents allow the worse flare-ups of the disorder to cloud their love for their children. They stop helping building the child’s self-esteem.
  • They stop presuming competence 
  • They stop dreaming
  • They lose hope 
  • They miss every awesome moment 
  • They give up

While Amy's piece and ASRD are satirical, the sad fact is this is also very much a reality. These are the types of people that we hear from when it comes to autism and they drown out the voices of Autistic people.

Last year, I received an email from my son's school asking him to wear blue to school for "Autism Awareness Day". I was beyond furious. Their email started out like this: 

"As most of you already know, April is Autism Awareness month. April 2 (tomorrow) is WORLD Autism Awareness Day. We really would like for everyone to wear BLUE tomorrow to help with raising awareness of Autism."

Over half of that school is Autistic, so I'm pretty sure everyone there was aware. So, I was confused. I sent them back an email:

"I don't know if you are aware, but I am on the Autistic spectrum and we do not participate in autism awareness month in our home. I am actually a part of a huge Autistic community and we celebrate Autism Acceptance Month in lieu of "awareness". 

D will not be wearing blue, because we don't support autism speaks in this household. Light it up blue and the color blue for autism awareness are autism speaks initiatives. Please also let everyone know that since the school is participating in this, I can not, with a good conscious send him to school to be subjected to the very thing we are against."

You see what I did there?... I used the word "Aware" .

Personal Note: My son no longer goes to this school,but not because of  this incident. However, one could say ASRD was the cause of me having his placement changed

The phone call I received a few days later started out with how they didn't mean to offend me, but they were not doing blue to support Autism Speaks, only to honor "kids with autism" and give them a special day. 

Which brings me to my next points: 

First off, Light it up Blue for autism came about because of Autism Speaks, they created it. They also chose the color blue because more boys are diagnosed Autistic than girls.

Second, if you are doing it to honor a loved one you do not need a special day or month to celebrate their neurology. Autistic and other neurodivergent kids should feel celebrated and proud regardless of what day or month it is. 

What makes it even worse is the driving force behind the color blue and awareness campaigns is how horrible autism is and how Autistic people wreck the lives of others. 

They say: BEWARE, Be Afraid, Fear Autism...

These campaigns do nothing to really educate anyone about autism. 

Image courtesy of  www.facebook.com/boycottautismspeaksnow
Image description: picture of home under a
giant rock. The background of the image is
 blue lights. Text reads:
Can the three people that aren't 'aware'
of Autism even see the blue lights from
where they must live?
Sure, if you ask someone if they have heard of autism they'd probably say yes. But, ask them what they know and the majority will either spout of misconceptions or say nothing at all. That is what Awareness campaigns accomplish. 


Awareness campaigns tell the public that Autistic people are outcasts in society because of their autism. 

They tell society that we are completely miserable, that we are trapped, that we have been kidnapped from our families, stolen, lost... 

But,the people running these campaigns don't ask Autistic people if that is how they feel. They tell us that is how we should feel and to "shhh be quiet, because grown-ups are talking." 

They are the ones making us the outcasts by deliberately excluding Autistic people from our own advocacy. 

Autistic people need Acceptance. 

Awareness campaigns do not bring about true Acceptance and authentic inclusion in society. They bring fear and even more exclusion. They turn autism into a fashion statement, a money making scheme, something to make other people feel good... while still making sure Autistic people are outcasts. 

It's time we stop blue-washing the month of April and move past Autism "awareness". 

It's time to promote Autism Acceptance and a good start would be to hand over the "autism platform" to people who are actually Autistic.