Mama Examines Shoes

Saturday my family went to a big gallery event for a wonderful program called Pablove, they pair up mentor photographers with kids with cancer to give them an artistic voice to express themselves. Gabriel participated in the program and had one of his photographs in the exhibit.

 

During the silent auction he made friends with a woman who was stalking a photograph by a famous artist hoping to get the final bid. She was very funny and nice and chatting it up with Gabriel.
 

While having this conversation a funny, as in strange, thing happened....

this woman found out he was homeschooled and decided to quiz him,

you know to see how smart he really is.....

she asked him, what is 2+2?

Out of the blue, having a wonderful conversation and he gets tested.

He is 16 and she asked him this, at an art show where his work is displayed.

He didn't answer her so she decides to help him out and holds up her fingers for him to count. I step in reluctantly and say history is his thing. Reluctantly, because he and I have been working on these type of situations.

I am trying to teach him to say things like,

"Damn girl, why you gotta be like that? I thought we were just having a good time, I didn't know there was a requirement to talk, bitch."

But he won't. He always tries to be polite first.

Another funny thing happened when I politely tried to educate her on a better, more appropriate question to ask a 16 year old. I quickly learned she was clueless or had one too many glasses of wine.

She asked me if he was a Savant.

I spent the next 30 minutes looking at the ground. Here is what I saw through the lens of my old camera.

Last week I got tested too. Yeah, it seems many people in the Down syndrome (Ds) club have the mindset members aren't allowed to voice an opinion unless you have earned it through the resume club. No, I need to be totally honest here, you are allowed to speak, just be ready to be attacked and questioned about your resume for Ds. if you dare speak out.

 

Back to the ground I went, looking for strength and I started thinking about my week, how draining it was and how I was looking forward to this time of creativity.

 

In the past few weeks, I have received many emails from men and women in the upper echelon of our Ds politics ridiculing me for questioning the culture within, by asking me things like "what exactly have YOU done?"
and "how dare you say this?" and "Do you know what I have done, while you scream and point fingers?"

 

 Then every single one proceeded to share with me their resume.

So while I was looking at the ground it came to me....and I looked up...

 

 

You know what?

Mama don't play that game. Mama done had this baby and now you wanna shut me up? Nope. Not gonna happen.

I will continue to talk the way I talk.

 

But today, I am not talking to you pole climbers,

Today, I am saying this to the Mama's, and the Daddy's too.

You know who you are. Stop looking at the ground thinking this is where you belong, looking down, being polite. I just want to say this, and I have nothing on a resume other than being a Mama.

Being a Mama is enough!

We have done everything we need to do to be a part of this club. We have a right to question whatever we want, to and about, an organization that carries the face of our children as their moniker.

Mama is gettin' all riled up now,

Mama says, 'lil Mama's you go on now and say what you need to say without letting some pole climber with different shoes than yours tell you you can't talk. Don't you let somebody tell you your shoes ain't good enough...

 

some Mama's don't even have no shoes.....and that's alright...

 

Mama is preaching now and she says.....

 

We are all Gods creatures, big and small and that there is the point.

Mama is looking up now and she says,

 

 Hey you, up there on that pole, you got some big ol' buggers in your nose. You better clean that up, cause that there is nasty.

Mama says I can't help myself

I have no business joining the march of #JUSTICEFORETHAN.

This is the hash tag used on the Twitter party. It happens every Thursday and is part of the grassroots efforts of T21 Brigade and Down Syndrome Uprising, fueled by the additional support of International Down Syndrome Coalition. These groups of outspoken advocates have demanded that the investigation into the homicide of Ethan Saylor is finally given the attention it deserves.
I have no business getting involved. I don't know the law, I have a full plate already (remember we are dealing with cancer over here), and my laundry basket is over flowing.

But I can't help myself. I literally wake up early and use my precious moments of quiet to stop the noise from inside. The noise of injustice, of a story not told and of the truths I have witnessed are all too loud. I have to do something, to get some quiet.

The noise is hurting my brain, damaging my heart.

Throughout my day, I am sneaking a minute here and there. I jot a note, send an email, write a letter, tweet, probe, request, sign, forward, PM, copy, paste, capture......all little moments stolen from my day that add up to something that quiets the noise in my brain and softens the ache in my heart.

Last week was very intense emotionally. I received so many personal messages full of emotion, fear, anger, outrage and utter disbelief of the culture of Down syndrome driven from within the politics of our national organizations. I used every trick in the book to get our national groups talking and when they finally did, boy did it disappoint.

And then....something wonderful happened....

A shift in my heart,
in my mind,
a paradigm shift.

It dawned on me last week, I too had fallen into the negative culture of what Down syndrome is, the dark side of what some believe is reality. I had started to believe the press. You see, in our Ds culture we have some old organizations that hold the history of being our spokespeople, they profess to have the answers, the connections, the ability to make change. Many of us have been literally begging them to do more.

To hear,
us -
Mama,
one of their own.

But then it all hit me with one gentle word from another Mama. A Mama of an 18 month old toddler. I made a comment to her about needing change, she quietly said to me - there is a radical change in thinking.

"IS"
As in now
As in
Wake up Mama
You got sucked into
the vortex of
Awareness
Vs
Activism

There has to be both,
and one is not a nasty word.
Activism is active.

And today I don't even have to leave the hospital room to participate.
I was focusing all my efforts on begging for change and trying to
open the wrong door.

Door one was locked and I kept trying to pry it open.
Doors two, three, four and five are wide open.
I was using the wrong search engine.

Yes!!!

So many smarter, younger, active Mamas had already figured this out.
I had missed the memo because there wasn't one.

We (oh you know Mama done joined this club), have no time for memos, we are stealing minutes here and there and we make them count.

So let me rephrase that, I had missed the book, the five year old blog, I had missed out on "IS". And when this fierce lil' Mama had typed that little word to me in one of her stolen moments, this little word "IS", created a moment of silence. A precious, beautiful moment of silence from the chatter in my brain and the hurt in my heart.

A little sweet thing that "IS" is.

Tears flowed, the pen moved...

A change "IS" happening.
A radical change.
I can participate.
I do belong.
I have a voice.
My son has a voice.
My son "IS" ok.
He will be protected.
His life "IS" equal.

While 300 people march to the Capital..
30,000 people are writing books, blogging, tweeting, emailing, living life.
Lady Madonna's are working with baby at her breast and she "IS" able to feed the rest with her form of activism. And it "IS" effective! It "IS" a change!!!

I have no business doing this right now.
This" IS" not a business, this" IS" a revolution.
Robert Ethan Saylors Mama posted this today:


The least I can do "IS".


This is a Blog Hop


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Excuses

I have a CarePage. I started writing there when my son was diagnosed with Leukemia. But I had days I would get pissed off about something Ds related and I didn't think it was appropriate to write it on my CarePage so I would purge it out on this blog thing. My sister would read it. That is pretty much where it has stayed with the exception of a few times when other people got wind I didn't give a shit anymore and was calling them out. But it is still a mess and I really don't care. The photos are bad, the punctuation wrong, errors all over the place and it never looks the way it did before I hit that button to post.

Something about HTML, I don't know and I just don't have the time to learn it all... UG! I said it....
The fact that I can link and write a word with a line through it is very exciting for me and I am ok with this for now.
I am a frustrated old lady fighting with technology and it is really really hard for me to say this, I hate being old and using it as an excuse. I also hate hearing people say I don't have the time to do that....and I have found myself saying this too lately (see above). So I will say it differently, I don't have the time to do this well. I am choosing to leave this blog plain, basic, flawed or in short "half assed".

I am not a real writer, I am using it like an exorcism because that is how the words flow with me now. Literally I will feel like something has to get out of me and then it just comes out. Good or bad, they are my words.

The best and the worst thing that has come with this cancer that invaded my son is the fact that I really gave up caring about "it" so much. So if you want to read through all my mistakes and inconsistencies then I am honored.


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The Burger King Crown Experiment

Before we moved from Florida to Los Angeles the hubs came out for some agent appointments, to scope out a place for us to live and to interview some Pediatricians. We honestly didn't know what area of Los Angeles we wanted to live in and what might be the best school district. We repeatedly reached out to the Down syndrome affiliate here and got no response, so he trudged around checking out schools.
Gabriel had been in a great school in Orlando on a college campus and it was a dream. Every single child was respected for where they were in their learning. He happened to be the only child with a disability in the school and they just looked at this as another child to teach. I know you are wondering why we ever left? Some days, so do I.
This was a private school but the tuition was very low, no way could we afford private school in Los Angeles, where our rent was going to be three times our mortgage in FL. Things had to change.
One school Cullen visited took him on a tour and proudly pointed out some kids who were wearing Burger King Paper Crowns. "Those are the SPED kids," she said smiling. Cullen asked her if there was a party that day? "No" so he asked why they had on the crowns.
"Oh, they always wear them, so we know who they are, they love it! "
Needless to say we didn't move into that district.
I was reminded of this today when I googled Law Enforcement Training and Special Needs and found this from the Autism Society of Maine.
This made me sick.
Check out the three page document this training program suggest parents fill out and file at their local law enforcement agency. Would this form have helped Ethan Saylor? It looks like a rap sheet. And how many people know what perseverate means? This can't be serious?
Parents, please think long and hard before you add your kids name to any lists that single them out more than they already are. Risking committing a Godwin end to this blog it has to be mentioned the parallel to the Yellow Fabric Star sewn on the shirt of all who entered the concentration camps. Alienation based on a disability will only further devalue a person. Your person.
Mama don't like it.
The homicide of Ethan Saylor has created all kinds of drama within the Down syndrome club. Many people are talking about Law Enforcement Training specifically for dealing with people with Down syndrome. Entrepreneur types are showing interest, non profits are showing interest and many are wondering why?? The civil law suit hasn't even been filed and already it seems many are lining up to reap in the reward.
I relate this to the Burger King Crown experiment above, one schools interpretation of what they felt was inclusion. They sure felt like their heart was in the right place, but it was so misguided. Many disabilities come into the room before the person. We advocates work so hard teaching the uneducated to let the person walk in before the disability. When we single out people with Down syndrome and create police training specific to them, we take away the individuality of the person. We take away the equality that is already afforded all people regardless of skin color, religion, sex, marital ! ,.status and yes disability.
Mama says "I ain't lettin' my child walk around in a crown, unless everyone else has on one or until he is made King."
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"hitting a brick wall"

I wrote this the other day but decided it was just one for the files. Until today when NDSC came out with this suggestion to Down Syndrome Uprising and T21 Brigade repeated pleas for help in the advocacy for Robert Ethan Saylor:

National Down Syndrome Congress: What makes you think the DOJ is not taking action? The wheels of justice are painstakingly slow. We lose credibility the moment we begin to act as zealots advocating for anything. All actions must be level-headed and well planned. What we need you all to do is buy a sympathy card and send it to Ethan's mom. Let her know you signed the petition, let her know you care and let her know that Ethan will not be forgotten.

Mama don't like the tone of that.
So I decided to open up my files and post my earlier thoughts.
Should we thank the Human Rights Violaters?
This Homicide certainly got the attention of our national advocacy groups.
They have had to make more than one press release,
about the same subject.
They are still working on the working together part.
They need time....
Tick
Tock
We are waiting
We being the other Ds advocates.
Other means us, the parents and people with Ds, not the paid advocates who are really busy telling us they are really busy.
Mama don't like waiting.
Mama has been busy gettin' my crafty on, cuttin' and pasting' up a storm, kind of a form of scrapbookin'. I found all these highlighted treasures on public Facebook pages, free for the takin'.

David Tolleson -Executive Director of National Down Syndrome Congress

David Tolleson: ...we will alert the community if we feel that we have hit a brick wall. Our press release is as follows.

Blah.Blah.Blah.
Mama don't like that patronizing pat on the head.We done read that press release last week.
Are we being trained to be compliant,
just like Ethan Saylor? Or...
This little girl who had 8" of her hair cut off by her teacher.Why?
Oh and this little girl, she had her feet bound up with duct tape. Non compliant.
And this young man was walking down the street in his neighborhood when he was pepper sprayed, knocked to the ground kicked and beaten. What did he do? Non compliant.
Never heard about these things? I know.
The others are confused.
Others have been compliant. Polite.
Yet, no one responds.
So the Others become non compliant.
We get louder.
We get scolded.
We are persistent.
We get the silent treatment.
While our leaders are not talking on the traditional public front they seem to forget what is public and what is not.
Even Mama knows 'bout privacy on Facebook,
I got lots of scrap booking' material. Maybe someone needs to give these boys a little lesson in how it all works...
A) When you post something on your Facebook page and it isn't protected anybody can view it, pass it around and copy it with something called a
screen shot.
Joe Meares - President Down Syndrome Affiliates in Action

Joe Meares : The latest just in from blog-o-sphere
I’m an arrogant, posturing bully and a hater who fears change and I’m angling to get myself a position with a larger group. I was asked if I would dare respond or “ will he go back to his capacity building and seeking more opportunities for his own aggrandizement?” LIKE if you DISAGREE. I’ll check in the morning. Now---I’m going to bed. Arrogantly posturing and bullying is hard work and I’m tired.
Like · · Share
Jennifer Morrison Campbell: Perhaps you might clue your FB friends into why you were called this: http://wordshurtorheal.blogspot.com/2013/03/mama-writes-advocacy-groups.htm
Joe Meares: I don’t think they’ll care. Self-deprecating humor loses some of its value with too much back story. Besides, I will reply soon.
39 minutes ago · Like

B) If someone is friends with a person you are friends with, they can also see what you write on that person's page and get a Screen Shot and pass it around.

Joe Meares: Mama did not get it right and she is not spot on. Again, I agree with the need for action and this situation SHOULD evoke emotion. But---it must be driven by logic, common sence and a good stratagy after knowing ALL the facts. I see none of this in the blog. I see finger pointing at organizations whose roles are not understood. I see blame being carelessly thrown on organizations who are actively seeking solutions and agressively promoting and planning to lead training and---- Unless each are to check in with Mama to seek her approval at every turn---perhaps they ARE doing their jobs. I see pettiness and ignorance. (“everybody knows they have big bucks” referring to GDSF is just ugliness and unnecessary) What I fail to see is real advocacy. As a movement, we’ve never nor will we ever see progress by pointing out the shortcomings of others; real or imagined. And Mama----with respect to the organizations she mentioned----got less than nothing right! I wish I'd never seen this blog. It ruined my day. (My prior post was on behalf of the organizations I'm linked to. This----is ALL my personal views. While I stated before the 2 organizations I'm associated with do not take public positions or issue opinions-----I'm governed by no such filter outside of my roles with each)
7 hours ago · Like · 1

C) When you use all capital letters it means you are yelling.
D) People can also capture screenshots of before and after. So if it is posted read and captured, well, it was still there.

David Tolleson: While I understand Rachel's frustration, I agree with Joe Meares and I'm a bit surprised that you believe she "got it right" ("A subliminal advertising?" Really?) Of course she's entitled to her viewpoint, but just because she doesn't know what's happening behind the scenes, that doesn't mean nothing is happening. Adding to my confusion are the nice things she said via e-mail and on our website, which now seem disingenuous given her statements about us (and by extension our committed volunteer leaders) -- people who are trying to meet the needs of the family, their local affiliate and the very real desire and need for justice in this case. We are (and have been) working with the local affiliate, which has been working with the family since the tragedy occurred. We have met with Ethan's mother and discussed her hopes and concerns and options that the family is considering. We have met with the DOJ and asked for an independent investigation. The day following, our Governmental Affairs Director, Susan Goodman, contacted DOJ's Civil Rights Division to also ask them fan investigation. If they don't respond positively by next week, we will ask the community to join us in the call. Apparently, some folks wanted us to "beat" the police investigation, the grand jury, the Department of Justice, and, outpace the family and local affiliate as they process and deal with this shattering event. Sometimes advocacy needs a little humanity.
about an hour ago · Edited · Like · 2</
Mama here, uh it happened in January...
E) People can also look back on a Facebook page and see other issues that have been big news within our little club and capture those comments as well. (The Dr. Skotko and Letterpress Issue)

Rachel Douglas: Obviously Dr Skotko knows this one situation better than any of us. He spoke to this one situation not all the work of these organizations. This one situation is significant and women are facing a huge choice. We all have some relationship to Ds or we wouldn't be here. This public discussion will hopefully get more people involved in the organizations. I know I will be very interested now in seeing how this resolves itself. The critism has sparked me into knowing more. It is a good thing. Being positive involves telling the truth, the whole truth sometimes isn't pretty but we still need to hear the truth.
November 17, 2012 at 3:17pm · Like
F) People can also connect the dots, seeing the patronization when ever anyone asks for clarification. (Dr. Skotko and Letterpress issue)

Joe Meares:Respectfully, positions of organizations should come from press releases or position statements or explained to those who ask via a call or email. While I respect many opinions and everyones right to have one, I've seen too many opinions reposted or repeated as facts over the past week. I get social media is a reality, but---it's more like a 1960's small town beauty parlor than a vehicle to solve complex issues.
November 30, 2012 at 12:55pm · Like · 2

As a parent, begging for advocacy for this homicide and these other human rights violations, I am seeking answers.
Mama wants to know why our advocacy groups aren't advocating.
Today I read this from The New York Times I also read the comments. You should as well.
Why is this attitude I read online prevalent?
Why are my leaders not challenging these comments?
Why aren't they using all capital letters when a comment from an article about the death of Ethan says "smash the mong"
Why are my leaders not leading by example?
Hate the Haters, fight them, not others.
We others want to believe you are busy in your work day advocating. Not fighting from within your own family of support.
So while I am sure you didn't mean this to look like two good 'ole boys shooting the shit and taking care of the inside politics of your big important job, well, I hate to tell ya but....you are coming across like two good ole boys shooting the shit. Ooops! Mama says you might have some 'splaining to do.

Joe Meares: Uh---well----Actually, David, that was the one line I agreed with, you subliminal advertising profiteer. (Please visit the D.A.D.S. and DSAIA exhibit this summer at the NDSC Convention in Denver) (Where ALL the money is, according to the blog) I’ve softened over the past few hours. I now choose to read it as I would read Louis Grizzard (for the benefit of my friends in ATL) or Dave Barry. Try it----it’s hilarious.
about an hour ago · Edited · Like
David Tolleson: Maybe that's the ticket. Hope all the Meares have a wonderful Easter. When people are being people, it's nice to know that there's a higher authority ultimately in charge.
about an hour ago · Like
Joe Meares: We certainly prove everyday--we can't save ourselves. Best to you and family, David. Week after next ill be back for lunch again.
about an hour ago via mobile · Like · 1
David Tolleson: Ain't that the Gospel truth? Looking forward to your return visit.
about an hour ago · Like

In case you forgot you happen to be the head of two of our Ds non profit organizations all the time.
And in case you still don't get it, I happen to be begging for your help. And so are some other Mama's.
Mothers or Zealots?

Maureen Rich Wallace: I believe NDSC just lost quite a bit - if not all - credibility by referring to passionate, involved parents as zealots. Ethan's mom may want sympathy cards (which I doubt), but this mom wants action.
15 minutes ago · Like · 3
Ginger: Why are did you erase the comments that were here five minutes ago? I am insulted that I, as a parent, am uanble to repsond accusations against me.
8 minutes ago · Like · 1
Stephanie Wyatt: There are also many who have been in touch with the Saylor family. They want justice. Snarky comments and in-fighting do nothing to further that cause. Shame on me for expecting professionalism regarding such an important issue.
5 minutes ago via mobile · Like
Rachel Douglas: Why would you speak to your members in this way? We want to bring justice to a situation. We are offering to help. Speaking out is not being a zealot and thus shows how disconnected you are from the diversity within any organization. The unprofessionalism of your paid staff is well.....unprofessional. #JUSTICEFORETHAN
a few seconds ago · Like

So I guess I am back to thanking the Human Rights Violaters . Without you the lack of professionalism and the blatant pandering and politicking from within our advocacy groups would have never had an opportunity to be seen by such a large audience.
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Political Bullshit

Some things are just out of your control.
Cancer
Mean people
Death

Gabriel and Cameron are becoming opinionated, story telling,dramatic, funny men. They are also so sweet, romantic, thoughtful and creative boys.
They have a fierce side. They protect the underdog.

We have protected them from some things and exposed them to others.
Cameron knows all to well what slurs are and is deeply bothered if he hears one. I refer to it as collateral damage. But Gabriel doesn't know these slurs personally. He's heard them unfortunately, thanks to our "pop culture" movies for kids. But we just were really quiet and he never asked. In our house we hold the thumbs down when we hear the word "stupid" which is basically all the time when the Disney Channel is on, we made this the bad word.

He knows about injustice though, he has leukemia. But he also knows about discrimination. He knows all about Rosa Parks and Martin Luther King. His little brother's middle name is Kennedy, a nod to a history of people who fight human rights injustice. He and his brother made a short film about Bede Vanderhorst , a young man with Ds who was kicked out of first class by American Airlines. His class made a video asking a local Ds group to not use offensive comedians at a fundraiser. He knows many comedians make fun of people with disabilities but we've never told him about the R word.
We also chose not to tell him or his brother about the senseless death of Robert Ethan Saylor.
Should we?

Was this death the moment parents must decide -do we need to have a talk ready? Should this be a new tab on our websites of useful information- When To Have The Talk - Creative Ways To Have The Talk - Teaching The Talk To Non Verbal Individuals...

Does he need to know people with the same genetic difference as his can be killed because of it? Does he need to know a homicide will be excused because of his Ds? Does he need to know this could happen anywhere, like at the movie theater?

I met a man from a London suburb once and he told me his biggest shock moving to America was the racism against African Americans. People who shared the same skin color as his. He had of course heard of the racism but to experience it first hand was a new experience. African Americans have the Talk. It is vital for survival.

After Trayvon was murdered, the poet and former NBA player Etan Thomas wrote, "Very soon, I have to ruin my son's rose-colored glasses view of the world we live in. I have to teach him that...[i]f the police stop you, make sure you stop in a well-lit area and don't make any sudden moves. Keep your hands visible. Avoid putting them in your pockets."

Gabriel and Cameron have enough fears of death. A cloud of possible death hangs over our home. It is a reality we can't change. Every single day my family gets up and tackles the fear.
I think their plate is full. I can't ask them to take on another issue, another unfair violation of existence. I think it is only fair for me to believe someone else can and will handle this one. I really don't want to have to tell my sons that a man with Ds died when he went to the movie and objected to strange men touching him when he said no. I don't want to tell them a man died screaming for his mommy to help him. I want to tell them their Mom and Dad will do everything in our power to make sure all people's Human Rights will not be violated.

We will tackle politics, egos,and big business if we have to. We will search until we find someone with a mission statement that covers unnecessary death as a valid part of their advocacy role. We have tackled much scarier things than political bullshit.

But I would just like to put it out there...
We are tackling cancer here.
Can someone else stop the threat of death by homicide.


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Mama's Cooking Now

Mama here, stirring the pot of gumbo.
Uh, huh.
I love me some gumbo.

You can make it from whatever is in the house.
Cook it up together and every bite has something for everybody.
Yep we include it all. Whatever or whoever is in the kitchen that day is put into the mix and when you stir it up and season it just right well, you get some fine tasting gumbo.

You put it on top of some plain ole white rice and yummy goodness happens.
Don't underestimate the importance of that rice now.
It's what that gumbo rests on.

People start talking too. Over a bowl of gumbo.
Some of my best conversations and inspirations have happened over cooking up some gumbo.

Some people like Okra, it can be slimy though.
But if you add it in just right, well it can have it's place.
Just don't let it take over the dish cause then it's spoilt.
Spoilt is a word BTW.

I like my gumbo with a little spice.
I like to challenge the mouth every now and again.
I like the savory too.
The taste that stays in your mouth for awhile,

Personally, I am a seafood gumbo girl.
But some people put in chicken,
Andouille sausage.
It's all good.

Everything gets a chance to shine in this Gumbo.
But nothing shines too brightly or it is just wrong.
Once I burned the Roux.
Gotta throw it out and start over.
Starting over is the key when it goes wrong.
No salvaging burned roux.
The sour taste will ruin that beautiful smooth taste.

Nothing can be too outspoken either.
Don't put in too much red pepper.
It will try to take over that dish and people will just have to spit it out.
No, it is all about the balance.
Where everything has a place.
It just all has to simmer down and mix together.

Now dats what I'm talkin bout.



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