Sunday, February 23, 2014

Word God

It's too late to apologize
It's too late

Jerry Seinfeld
Chasing laughs
A high
A billionaire
Collecting cars
Mean Machines

A Hate Car
Your ride
High Octane Hate
Your Chariot
Word God

Your heritage
Your hurt
Your people
But not before mine
Mine went first
Push the pedal 
Word God
A Mean Machine

Fully aware
Of every word
Choose hate
You can.
Word God
Full Throttle Hater



Word God

Word God

Are dead
Of privilege
Word God

Word God
Didn't subtract
Didn't add
Didn't multiple
Word God

It's too late to apologize
It's too late

Tuesday, August 20, 2013

You may say I'm a dreamer.....

I wonder sometimes what would happen if there was no diagnosis for difference. No label, no advice or expert telling us this is what our kids will do or won't do and this is how you handle it,etc....

What would we expect when we were expecting?
(Yeah that is a joke on that book I read cover to cover)

I am a dreamer.....

But seriously, what if we just had babies and raised them?

What if we just figured out what works best for our baby given the environment they would live in? What if everyone had an attitude that we collectively all did a little giving and taking, pushing and pulling...know what I mean?

What if our kids are runners and we let them, we just took them somewhere safe and let them run? What if we allowed them to have the desires they wanted, to fulfill their interest? What if we allowed them to truly experience choices?

I bet you have heard this..

"Give your child a choice, but pick choices you would be ok with."
Seriously?!? Is this really a choice?
(And yes I have done this for years and shared this wisdom)

As an older parent this is all I have on you, I am older, not wiser.

The only thing I can offer you is to please be respectful of your child and call me out when I am not respectful of mine.

Maybe many of you come from families that have people who all follow a certain path of success but I would wager you all know someone like this in your family tree.

I have a relative who has never married, a bit of a hoarder, collects items considered valuable by some- juvenile by others, not very social except with family and a few friends yet manages fine at a party, made decent grades, went to college, never had a relationship with the opposite sex or the same sex. They work at a job that makes minimum wage and has always lived with a relative.

I have never heard her mother speak of him in any way other than normal.

Is this person different?
But I can name a dozen families right now who have a similar relative.
Are they on the spectrum?

How do we classify this person?

A loner.
Married to her work.
Married to his church.
A bookworm.
A teddy bear.
A good ole boy.
Eternal bachelor.
Ne'er do well.
Jack of all trades master of none.

There are a myriad of slogans out there to describe this particular type of person but for the most part this person is a solid member of society.

A voter
A consumer
Family member

So I guess what I wonder is how much are we influenced and how much do we influence a stereotype?

Does the good ole boy stereotype influence itself? Should it? Will it continue? Should we allow it to continue?

Are these questions we ask about my relative?

Nah? We just love her as she is.

We know his quirky things, he knows ours.

We dance around each other and with each other.

As an older mom of a teenage son with a diagnosis of Down syndrome,
I love to share things about my son but I try to be aware of what he wants me to share about him. As a 17 year old he does not want me to discuss matters that are too personal or are about his body and his teenage angst.

I can tell you this,his emotions are real, honest and based on his unique life.

The regrets that I have so far are not trusting my gut enough, not listening to him enough, not respecting him enough. I regret some of my actions based on a stereotype and not on him. I regret some of my decisions based on an experienced mom's wisdom. I am not at all diminishing that moms experience but it really is just that.... her experience and her child's ....

The bottom line is this...we all fart, poop, pee, piss our pants, leave skid marks,gag, burp, masturbate, try out lines on the opposite sex, get dumped, pick horrible clothes, pick horrible friends, pick good clothes, pick good friends, win, lose, try harder, get sick, cry, ache, love and want love.

And to tie this all up into a pretty bow....

we all just want to be loved.
And isn't true love based in respect.
Isn't that the crux of things? Really.


- Posted using BlogPress from my iPad

Tuesday, August 6, 2013

So you want to Homeschool? Great!


It is back to school time and every year I get bombarded with questions from parents wanting information on homeschooling. I thought I should be more organized and put something together to get you started and be easier on me :)

There are many many books out there on the whys and hows of homeschooling and I know you can find those on your own so I will leave that part out. This is specific to the Los Angeles area and is only a TINY look into what is out there. Most people who come to me have a child with Down syndrome and they are tired and frustrated with the system and are looking to homeschool out of desperation. Homeschooling is not for everyone. It works for us and the "picture" of what homeschool really is has as many colors as the paint choices at Home Depot. It is truly individualized and inclusive but it is your responsibility to manage. I am happy to share a few resources with you.
There are several charter schools (public schools) that are specifically for the independent learner (homeschooling). If you choose to go this route and utilize their resource teachers (special education) you would still have an IEP and all that entails however, you are the one responsible for the teaching thus no one on one aide etc.

Here are a few public charter schools:

Gorman Learning Center

Sky Mountain Charter School

Golden Valley Charter School

Also you might want to contact pioneers in the homeschool movement here , Marty or Carolyn Foote and set up a time to meet them and discuss your concerns and questions.

ExcellenceIn Education

They have a location in Monrovia that offers classes to students as well as they can help you if you choose to not enroll in a Charter School and instead file your own forms and have your own Private School. I believe this is called filing a R-4. Perfectly legal however I don't know much about this. Marty is very involved in the legal aspects and the advocacy for homeschooling. They are also on Facebook.

Here are some other links you might find useful/fun if you haven't already discovered them.

Celebration Education Classes that are taught at Disneyland and more.

Field trips SOCAL This just lists Fieldtrips you can set up or sign up for.

A newspaper

WISH a co-op where everyone participates, located in Pasadena.

Urban Homeschoolers teachers and parents here are great, located in Atwater Village.

Creative Learning Placeawesome classes on the Westside!

Park days are huge and literally all over Los Angeles and surrounding areas.
I would encourage you to find one and go. Jump in and introduce yourself and hang out awhile. Get to know people. I just listed a few things we personally have participated in but the resources are vast. I believe everything I listed are vendored with most of the Charter Schools.
There are lots of Yahoo Groups and Facebook groups but this should get you started. Homeschooling is not for everyone but it works for us.
Hope this helps you.
Don't stress!
Have fun!
Good Luck!

- Posted using BlogPress from my iPad

Friday, August 2, 2013

"Leukemia Sucks, Down Syndrome Doesn't"

While many people are still confused and deciding whether they want to silence the Down syndrome chromosome.
I would like to offer this suggestion....
Cure Childhood Cancer
because it actually kills children and give them years of a living hell.
Link up to Alex's Lemonade Stand  and send them your research dollar donation or St. Baldricks, or Cure Search.
"Leukemia Sucks, Down syndrome doesn't. "
Words Gabriel spoke at the Club 21 fundraising dinner a few months ago.
A speech he wrote.
He has it. He lives it. I don't.
He knows about the research to find a cure for Leukemia.
He supports it, dreams about it, wants it.
He is sick of and sick from Cancer, not Down syndrome.
He wants his old normal self back.
Yes, I did say normal.
That word normal - when we attach it to a person with Down syndrome suddenly the word normal turns to the word perfect. (These words I stole from my husbands one man show)
My son is normal. I am normal. You are normal.
He watches old home movies of his life before Leukemia.
He refers to times back before Leukemia.
When everything was good.
Good and normal.
Give me some advice.
Do we tell him about the research to cure Down syndrome too?
How scientists are trying to erase the good and normal part of his life?
How do we explain it all?
I now feel the need to stress to you how healthy he was prior to Leukemia.
A normal,healthy boy with Down syndrome.
Research shows his extra chromosome is valuable
to possibly help find a cure for diseases like Leukemia or Altzheimers.
He has one and might get the other.
Research is also being done to erase that extra chromosome.
Sooooo his extra chromosome isn't valuable anymore?
But should we save that extra chromosome? Put it in a database? Filed away safely of course...
A dilemma.
Which do we do first, Mr. Scientist?
Cure the disease or rid the syndrome?
Kill the disease or kill the syndrome?
Where is your money going?
Are they one and the same?
We know about the recent push for research money specifically for childhood cancer, this was quickly identified and addressed. Childhood cancer is different than adult cancer. The money wasn't being shared. We support research for all cures of any cancer,who wouldn't? Ultimately, lets get rid of all of it. But we want a choice where our money goes and of course we want transparency in the organizations and how they use the money. Makes sense. People spoke. Done.
Now the comparision.
Honestly, I feel foolish. I didn't know about all the different research going on in Down syndrome world. We have some communication problems in our old blue blood charities.
I foolishly believed the research was being done only to enhance cognition, to help the brain synapse better, or to find a cure for Altzheimers or Leukemia. I was cautiously interested as long as the individual with Ds was respected for their personhood. But like so many things in the Ds club, the bigger picture reveals so much more. This is why I wait. This is why I make the distinction: Cancer kills children, Down syndrome doesn't.
Insert photo of my bald headed child here.

Heal this kid. Help this kid. He has cancer.
I have no problem saying this about finding a cure for cancer.
Insert photo of my son with Down syndrome here

Heal this kid. Help this kid. He has Down syndrome.
I have a big problem with saying find a cure for Down syndrome.
Then you will hear this Mama roar.
In fact we did have this happen on quite a few occasions.
And I am so sorry to classify these horrible people with the Christian title but this is how they presented themselves, before their God inspired presentation to us to pray away the Down syndrome....
"Cause God don't make no junk"
"God said he makes us perfect and in his image"
"God says he can heal everything. He didn't have an asterisk there"
Maybe you will understand why I am a little sensitive when the research talk starts speaking of Down syndrome as a project, or a thing, or a loudness that is needing to be silenced.
Too Much Information
Makes me queasy.
Not Enough Information
Makes me queasy.
Research has given me Zofran to combat this queasiness.
I shall take some and wait.
I shall wait for a cure for Cancer.
I shall work for a cure for Cancer.
I shall work to erase and silence Cancer in children.
Cancer is a horrible sound.
Down syndrome has a sound I love.
I am listening.
"Leukemia Sucks.
Down Syndrome Doesn't"

- Posted using BlogPress from my iPad

Sunday, July 14, 2013

Trayvon Martin, Slurs and InJustice for all

This was originally posted in 2012... Similar situations have happened recently so I am re-posting.

Facebook Posts

Saturday, July 13, 2013

Big Brother and Politics of Racial Slurs

Bill Maher was one of the first letter campaigns I ever entered.
When Gabriel was a baby, Bill Maher used the word retard on his show.
It hurt. It stung. It was horrible.
Many people like me wrote letters expressing our outrage.
I remember being so pleased the NDSS and ARC wrote him and
he apologized, on the air.

It was a feel good moment. I felt like I had advocates who supported my baby. Then it happened again. More letters and another on air apology.

Only this time it didn't feel quite so good to those of us who felt a little
déjà vue.

As the years have passed more and more celebrities started to join in the slurs and turned the R word into one that seems to always mistakenly slip off their tongue.
Bill Maher joined back in the ignorance and pushed the envelope further, attacking a specific child with Down syndrome this time.
Why not?
NDSS sent him his letter again but this time he didn't make any apologies.
Why should he?
He put the letter in file 13.
As did all the others.

A letter doesn't work any more.

Tim Shriver started the Spread The Word Campaign in 2004.
He even went on The Bill Maher Show and The View.
In 9 years there are 400,000 thousand signatures pledging to not use
the R word....
Special Olympics reports they have over 4 million athletes yet there are only 400,000 signatures.
I don't get it.

Some people say it is about politics.
Inner politics or real politics?
They say
Politics run everything.
Even Nonprofits.

Does it matter what political party you belong to whether we should call you out for the R word? A child gets bullied based on his diagnosis of Down syndrome and it is political? Really?!? Does it matter if a celebrity has contributed to your non profit or invited you on his show? Does that give them a pass? Are we that easily bought off? Are we that star struck? That shallow?
Oh,come perform at our fundraiser and you can say anything you want ,is that how it works?!? Or hey, use a person with an intellectual difference in your show and you can have a seasonal pass. Really?

How sad. How predictable. How weak. How informative.

The show Big Brother just released tape of racist remarks from some of their contestants. People were fired. Did the show defend the slurs by saying but we have a Asian American on our show? No how ridiculous would that be?..... Yet our community has allowed this, repeatedly.

Barbara Walters and Whoopie Goldberg seem to think it is ok to use the R word if you are old. Really? Old like Bill Maher old? Really? He isn't much older than me and he is a hell of a lot younger than Barbara. He has been educated repeatedly. Apparently so have you two, the R word was a topic of discussion on The View in 2010.

My mom is 84. She doesn't call black people the N word and she is from Mississippi. Would she be excused because she is old or where she was raised though? Seriously?!?
Give me a break! She also does not say spic, chink, wetback, fag, dyke or retarded. Why?
She has humanity. She can make a point without degrading herself and others with slurs against their person.
Hurling slurs is not intelligent humor. It is not satire. It is mean.
Plain and simple.

We need to start holding all people, even celebrities who sit at our table, accountable and serve up a consequence or two in true respect for people with intellectual differences.

It is time to start walking the talk we really believe people with intellectual difference deserve equality. Every single time we let this happen without real consequence people lose faith and doubt the sincerity and mission of our paid advocates.

Stop accepting and promoting the lies that people just don't know better.
The word has been spread.
It is time for step two.
Consequences. Real consequences.

- Posted using BlogPress from my iPad

Sunday, June 2, 2013

Grassroots Advocacy- A Homeschool Experiment

A group of homeschool families from WISH...What You WISH your School Could Be Homeschool Co-op in Los Angeles got together to show how a little effort can make a big difference in advocacy.

We learned about Ethan Saylor and how his homicide and Human Rights Violation had such little attention compared to Trayvon Martin. His petition for justice had over 2 million signatures. We talked about what we could do and what it means to be grassroots.

Naturally we met at a park, made some signs, pulled a huge favor from a well known photographer Blake Gardner and made a YOUTUBE VIDEO.

One of the teenagers Finneas O'Connell and his band The Slightlys donated one of his original songs called Superhero to be used. (this is him^ he is so talented and nice)

We wanted the video to have energy and to be full of life in an effort to keep the interest of the viewer and to honor the energy of Ethan, himself a great musician and lover of music.

Another huge favor was secured with an editor from a popular television show. Everyone we asked was eager to help in any small way and we came up with this video as a means to spread the word about this Human Rights Violation against Ethan


We couldn't believe his own community had not already done more. We couldn't believe this Petition had such a lack of signatures and we wanted to watch it change.

Now that we have this awesome YOUTUBE VIDEO, what can we do?
What homeschool kids love to do,an experiment!
EXPERIMENT: Can our grassroots effort bring more attention to #justiceforethan? Can we get more signatures on the petition? Can we get our YOUTUBE VIDEO to go viral?


Share the YOUTUBE VIDEO like it is your child, your best friend, your cousin, a person!
Sign the petition!
Tweet #justiceforethanand share the YOUTUBE VIDEO that way too!

CONCLUSION: #justiceforethan

- Posted using BlogPress from my iPad