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” — 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