Thursday, May 21, 2015

Where Hope Grows

I went to see the independent film," Where Hope Grows". 
My interest in seeing this film had to do with seeing the work of first time actor David DeSanctis, who I had heard was fantastic. 
 I have seen a few Bible thumping films and honestly I was expecting the worst but hoping for the best. I think the film was somewhere in between. 
Was it a perfect film? No, is there such a thing? No. Could it have been better? Yes, I still don't know how the relationship with Milt and his wife actually got to the point it did and how we as an audience were supposed to know his buddy was having an affair with her. 
I liked this film because it gave us who are inside this Down syndrome (Ds), 
club a look inside the mind of someone who really is ignorant of what it means to live with Ds. Perhaps we could look at this as the writer holding up the mirror and saying this is what you are putting out there. 
I believe we, people who live with and people who love and advocate for Ds, should examine this film like we examine our own body in the mirror. Make a list of what we don't like about it, the generalities, the stereotypical cliche moments and ask ourselves why this portrayal is still the image a person who has no connection to Ds believes to be the norm. 
After the screening there was a Q&A with the Writer/Director, the Actor who portrayed Colt and the Composer. They were all asked the question if their views and ideas of Ds had been changed from working with David De Sanctis. The answer was 100% yes.
Why are we asking this question? Are we perpetuating a generalization of people with Ds? Why do we assume a person with Ds will change everyone they meet? Isn't this a lot of pressure to put on everyone, but especially the person with Ds? 
Considering David was cast in the role as a symbol of child like faith, I found it significant none of the panel members described any type of spiritual change from meeting and working closely with a person with Ds. 
 I would call this a win in blowing up these 3 people. Did this translate to the screen? I'm not so sure.  
We could scoff at the writer for thinking automatically of a person with Ds as one who has this inbred capability or we could ask ourselves why he felt this way? What type of inspirational messages are we giving out as parents and advocacy organizations? Are we furthering the stereotype that people with Ds are some type of angel or messenger from God. 
Another question asked was something to the lines of this, "we as parents strive to see our kids with Ds grow up, be included, get a meaningful job and live independently, but as a writer why did you write this life for Produce?"
The director explained, he just did, he assumed this is what would be the case. The woman asking the question persisted, "but how did YOU know this, I mean WE all know this but how did YOU know? "
This was very insightful to me. He didn't know. He didn't know most people, including many in our club, assume and presume people with Ds will never really be capable of true independence. Again, why do we feel this, and honestly if we want to really advocate, why should it matter? What are the messages we are sending to those not connected to Ds? 
I want to believe we are in a great time of possible change in how we view people with intellectual differences. I believe we all, club members included, can use this film to motivate true change in the acceptance of people with Ds.
  Perhaps the writer was showing us what our awareness campaigns have actually accomplished. We might have made people somewhat aware of Ds, but have we achieved inclusion or respect? This writer explained he took a chance to make a film that actually fully included a person with Ds. 

My biggest takeaway from the night was when the writer said honestly,
 "I still don't  know much about Ds but I do know more about David. " 
Isn't this what we want?! Isn't this the definition of inclusion? 

The screening I participated in was packed full of people who have Ds or were connected by blood or friendship to a person with Ds. Twice in the screening the audience broke out into spontaneous applause. Both times were when the character schooled someone on the use of the R word. What is evident to me is that we are fed up with the word, a symbol of disrespect. 
We want more than just lip service in a show or film that is mainly populated by viewers who already 'get it' . I am happy the entire crew signed a pledge not to use the word but I am not satisfied this message has crossed over. I am not satisfied our advocacy organizations have done all they can to end the word as a slur. 
Seeing this film with a group of like minded individuals was a great experience.
 I felt safe among these people and  I felt empowered. I believe we need to feel safe and empowered in order to expect respect. We need each other to hold one another up and empower each other. We need to come together and that should start at the top, our national advocates should work together and demand respect and inclusion. 
How  we can expect a writer who knows nothing about Ds to flip his script when we ourselves need to rewrite our own. We need to stop the generalizations from within our own language, we need to respect the past but forge into a better future. There are subtle ways every one of us can do our part in changing perceptions. 
When we hear a new mom repeat a generalization, educate her with grace and encourage her with respect for the individuality of Ds and all its diversity. When we hear an older mom talk about her adult with Ds in a child like way or state mistruths from her generation, gently educate her with grace and encourage her with respect for the individuality of Ds and all its diversity. 
Experienced parents (myself), need to stop talking so much and start listening more. The world is a different place for babies born today with Ds. We need to embrace this change and use it to move our advocacy into one of acceptance and true equality. 
I am encouraging you to go see Where Hope Grows and let the film motivate you to become a watchdog for change within our advocacy organizations and ourselves. 
We don't have to hang our hats on this film as the say everything we want said film. Let's use this film as a springboard for a dialogue. A dialogue for a significant change towards real respect and equality for people with Ds. 

Saturday, May 31, 2014


I hate Wednesdays.
Every week Gabriel gets a big dose of Chemo called Methotrexate. When he is able to take the full 100%, his dosage is 13 pills. They are tiny and yellow. We all hate them. We get them ready away from the kitchen and in a disposable container. 
In these three years Gabriel has developed a taste for certain things and a distaste for others. His Wednesday routine is noodle soup and shrimp cocktail. We oblige when we can. We start him off with an appetizer of Zofran to lessen the nausea. And we usually start our night off with wine to lessen ours. 
Later tonight he will take 6MP, this is the cute name, it has a longer more scientific name but everyone in our world knows 6MP. 
When this all began Gabriel couldn't swallow pills. Now he is up to swallowing 15 in a few minutes. 
June 2 Mom's birthday. Gabriel's diagnosis day. I remember I hated telling her because I didn't want to spoil her birthday. We will certainly never forget this day and most of the events that happened on this day. They are forever etched in our mind banks. I remember talking to Cheri Kay, our most beloved PT. I remember wailing in anger at this horrible lottery we had won. I remember Cullen and I holding each other up in the hallway away from our kids eyes while the sweet nurses in orthopedics filled them with juice and graham crackers from their stash, oblivious to the horror story they were about to live.
Later, we would talk about how similar hearing this diagnosis was to hearing the diagnosis that our baby had Down syndrome. Time stops when something unexpected happens. I remember after Gabriel was born talking to Lisa my best friend who had just had a baby a few weeks earlier and we cried, I remember talking to my Mom who told me it was all ok and I cried. Cullen and I cried, we shook our fists at the sky. Our biggest worries were how the world would treat this baby, this child, this person. How sad this is.....

Now I can see this in such a different light. I so wish I had had a different view of nature and life 18 years ago.  Much of the world is not nice to people with Down syndrome but this is not a reason to grieve, this is a reason to embrace change. Change of the world, not people with Ds. 
 I want the diagnosis of your baby has Down syndrome to be a world away from your child has cancer. They are nothing similar. Nothing. I want this news of having a child with Ds to change from sounding like a death sentence.
It is not a death sentence. 
Having Down syndrome is nothing to fight. It is something to embrace. Something to embrace wholeheartedly. Love it! Live it! Let people with Ds be!
Having cancer is something to fear. Cancer can be a death sentence. It is awful.  Cancer is something you will fight with every tissue of your being. I know my son has fought Leukemia like a man on a mission. He also has embraced his personhood like a man on a mission. 
This is the only thing similar in his two diagnosis'.
One diagnosis is evil and is called cancer. The other diagnosis is good and is called Down syndrome. Never forget this. I hope we can see the diagnosis of Down syndrome change from one of grief and sadness to one of life and love! #leukemiasucksdownsyndromedoesnt

Saturday, May 17, 2014

Just Another Typical Comedian, Daniel Tosh

Watch this. Please.

I'm sorry. I imagine this was difficult for most people. This is an example of a typical set in a comedy club or show. Daniel Tosh represents a typical comedian.

Someone forwarded this to me, over a week ago, I couldn't watch, I knew what it contained. These sets are all the same. It happens all the time. People forward things like this to me because they know I will say something. Sometimes I do, sometimes I don't because trust me it comes with a cost of a few sleepless nights.
 Usually it is minor comedians who are copycats of people like Tosh O. People who haven't made it yet are sometimes more likely to respond nicer to a letter. Those are good days. But guys like this don't respond to their victims unless we have a big voice and can get some press. And let's face it, most of us don't have that luxury. Hannah Jacobs even started an organization called Family Member Inc. to cull together our voices.
 I hope more people will join our efforts.

After I watched this I did a Google search, Is Daniel Tosh a jerk ?

It was there! Someone else actually has asked this question a few years ago. Why? Because the person was trying to decide if it was cool anymore to publicly like him. Daniel Tosh was the guy who got lots of press for making a joke about rape and then continued the joke by ridiculing a woman in his audience who protested, suggesting she get gang raped right there.
He apologized.
Sort of.
His buddies in the philosophical humor business defended him.

So people ask others, what do you think? Jerk?


Apparently rape is now funny. Gang rape is really funny?!?

I am learning a lot about Daniel Tosh or Tosh O. So far I am agreeing that yes, he is just another typical comedian, AKA: Jerk.
But does this just feed his ego?
By admitting this, he is getting what he wants.... I guess.
How predictable. How cliché'.

But what I want to know is, "is he happy?"

Of course not.

Even this is predictable.
The unhappy, tortured, comedian.
I hurt because I hurt.
Clap. Clap. Clap.

What I am interested in knowing is the real Daniel Tosh. The man. The one that hears the nagging voice deep down inside telling him to stop. The voice telling him to look deeper, be smarter, or be original. I have to believe he knows that voice. He has to hear it, the one that says, "just stop being a jerk".

But I get it, if there is one thing I have learned about comedians, press is press and boy did he get press! He will forever be remembered as Daniel Tosh: The Rape Comedian. Do you think his Mama is proud?
I think he has convinced himself, like so many before, that this style is actually philosophical, intelligent humor.
This right there is the real bit, the real satirical laugh. People believe this! 
Like in the clip above when he jokes about a "retard" or "the mentally handicapped" or the "Special Olympics" and agrees it is horrible to do so and then he does it again. We are supposed to be intelligent, like him, and know that this laughter is really not laughter at the 'retarded' but intended to laugh at the jerk ( the one in the audience, not him) who REALLY laughs at the "retard".
I know, only the most intelligent of people, such as comedians, can truly get this. Not someone like me. A woman. A mother. No, I don't get it.
I bet he even gives money or donates his presence to his victims causes, to support the deeper philosophical beliefs of course. Hey, if you haven't yet, I suggest you hire a person with a disability for your show or a fat woman. Get some photos together for your publicist.  This will give you carte blanche for making retard jokes and rape jokes. It will be hysterical. Deep. People might even call you.... A Philosopher!
You know, sometimes I ease my pain by saying to myself, he and he alone will sit with this,Tosh O, the man. But this isn't true and we all know it. No, the victims, like myself and my family, will sit with this, what he says will nag at me,
at us. His philosophy will keep me awake. And this, is what really bothers me. He knows it hurts and he does it anyway. This is hard for me, a woman, a mother, to comprehend this type of calculated hurt.
I wonder if all the other, (cause sadly what he does isn't that unique) comedians like Daniel ever really think about what it would be like to sit on the outside of their brand of philosophical humor. Of course we, the victims, don't make a habit of going to comedy shows on purpose, (how could we?) but surely they know we still get to feel the blows. I hate to even admit this to you comedians... but you do affect culture. Not like you want the people studying your brand of philosophy to think though.  I would like you to Google your choice of words, make a search on Facebook too and check it out. Take a walk on the dark side of the hate that your brand of philosophical humor grows into and you might get just a little taste of what we deal with




I wonder if Daniel Tosh and other professional offenders like him ever really stop and listen to their inner voice? I doubt they care but I also have an inner voice. My inner voice will tell me to just forget it, but I won't, I'll try, but I can't.
I wonder if their stage character, conveniently created as an excuse to kick someone already hurting, ever has been repeatedly kicked?

They can walk away from that character.
And we can't.

They have a way to be heard.
And we don't.

They will always win.
And we never do.

Try sitting with this philosophically.

I wonder Daniel Tosh, when you sit alone in your thoughts and you hear that inner voice, the one telling you to reach deeper, the one telling you to stop, I wonder why you decide not to stop? I wonder why you decide instead to be a jerk?
I wonder, I think, I question, I write, I ask, I get philosophical. And yet, I never hear why?
Maybe I should just do another Google search.
Why is Daniel Tosh such a jerk? I probably won't be the first to ask.

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