Gomez & Morticia: DSAM

This is our third Down Syndrome Awareness Month (DSAM) where we have had Blake and Amelia assuming roles of iconic characters. Amelia's mother, Nicole and I feel like it is a creative and unique way to celebrate DSAM! You've seen them as Danny and Sandy and Major Nelson and Jeannie and for 2019 they are SPOOKtacular as Gomez and Morticia Addams.

It is also Halloween Month (I love October) which is full of spooky and scary costumes, parties and events. One thing that isn't scary is Down Syndrome. That said, I was terrified when Blake was born. I was scared for me, for him and what it meant for our future. In the years that have passed I realized how ridiculous I was. My reaction was based on a lifetime of conditioning from a fear based society. A society who strives for generic sameness instead of celebrating differences. A society who would rather be fearful and use it as an excuse for not moving forward and evolving rather than learning, facing their perceived fears and growing. And a society who still segregates people like Blake and Amelia in schools all across the country and won't engage in inclusive practices out of fear.

I was afraid of Down Syndrome, what a gift reflection in hindsight can be. But as Blake grows I have realized a much bigger fear. I fear the world I am leaving him in. I fear the realization that I am not going to live forever and wonder what will happen to him? who will be there for him? who will protect him from this scary, exploitative society?

This community has a serious housing shortage and issues surrounding meaningful employment for fair wages. There are issues with services and supports. We continue to fight for meaningful inclusion in education and in our communities. Advocacy is a long, frustrating road but Blake, Amelia and this community need as many collective voices as possible. We need those voices to speak up to advocate and to educate for respect, and also quality of services and supports. Because let's face it the scariest thing of all is the root cause of these issues, ignorance. I was there once, before my greatest teacher, Blake came into my life.

Dear Blake and Amelia, 

We will never stop fighting for you, advocating for you and educating people for you. We will combat the ignorance with education, the misconceptions with accurate information and the fear with love .. cross our hearts!

Nicole's cam

How are you celebrating Down Syndrome Awareness Month?

Letter to the EditorS

After seeing another Kardashian cover coming to a news stand near you I had to sit down and offer my digital two cents to the cyber space goddesses. I wanted to reach out to the Editor's of the top Fashion publications for answers or some kind of clarity.

Dear Fashion Magazine Editors,

I am writing to request that you broaden your scope for cover stars and ask why they have become so limited. You have left behind the supermodel (or any model) for more than a decades faux-love affair with people whom our homogenized society refer to as "celebrities". I understand that they are selling magazines because of societies fascination with them and lives everyone wished they had until they really had them. I also understand fashion is about fantasy, which is what many of the cover starts offer and project.

To me, fashion magazines are about breaking rules, innovation, evolving forward and what I have seen is the same scenario, same people, same stories, recycled over and over again.

Kim and Kanye on the cover of VOGUE?

The Weekend on an anniversary issue of HARPERS BAZAAR?

I don't understand.

What about a revolutionary idea? What about casting cover models who have a real story, who have contributed to our society and the progress of humanity in a positive, real and forward manner? those who have various body types/sizes? with no restriction or limit on age?

Where are the women my daughter is supposed to look up to? to aspire to? to connect with?

In the midst of the #MeToo Movement, I am confused by a crop top (no disrespect to Jeremy Scott - I adore his work) and leather leggings being a high fashion magazine cover worthy look? I understand the subjectivity of fashion as an art form and I adore it, but really? 

I don't understand.

What if your magazines became places women could go to become inspired about social justice, activism, female community AND beauty, style, and fashion all at the same time? This is why I subscribe and read them. This is also why I am letting my subscriptions lapse. If I would have seen this cover last week when I renewed ELLE I would have passed on renewing. It is nothing personal against Kim, I don't know her but it is what she represents from a cultural perspective. People being held in high regard for nothing, literally. The endless quest for money, fame, 'power' when at the end of the day when one does not use it for good or for service to others it also means nothing. The herd mentality that our society appears to be operating from.

Why can't women who are accomplished; scientists, activist, advocates for marginalized communities, social justice warriors, environmentalists, writers, business owners, hard working mothers, champions for change, women fighting for equality, survivors of violence, those who have beat breast cancer, etc be given couture or high fashion, styled looks, a glam squad and a PLATFORM to share their stories, inspire your readers and look good doing it. I would applaud a ground breaking cover like that.

You could still sell advertising in a magazine that doesn't have a celebrity on the cover every month. It would be refreshing to see a face that I did not know on the cover so to inspire me to purchase the magazine to learn more. It could be a stylish vehicle to promote change and forward progress not just consumerism by putting educated, accomplished, brave women on a pedestal and show young girls that aspiring to a meaningful career they are passionate about, participating in service to others or standing up for what you believe in never goes out of style! 

My peace sign (L) &

My daughter and I walking in the Women's March - Jan 2017

Some "celebrities" are doing a lot of good for women and social justice causes like Angelina Jolie, Oprah, and Michelle Obama. What gorgeous cover stars they are, with substance and a story behind them. It is something that readers can really be inspired by.

I think of the pioneering editors like Diana Vreeland who I would imagine would be rolling in her grave to see how boring and generic everything has become. The endless parade of celebrities, more advertisements in magazines than articles or artistic editorials. No one taking risks, pushing the proverbial envelope, trying something NEW or re-inventing the past in a new and fresh way. She chose models who looked different, she highlighted and accentuated those differences, she started conversations, she invested in artistic editorials and moved the industry forward.

What I seem to be continually asking myself as I let each subscription run its course without renewing them ...

Shouldn't fashion magazines become part of the larger global female conversation? become a tool to also educate and inspire women on more than what to wear? Could advocating and change making in style become a trend? Why can't 'ordinary' women doing 'extraordinary' things be celebrated on Magazine covers? are we forever stuck in an over air brushed, celebrity, one dimensional culture?

Please help me understand.

Sincerely,

Lisa

X

Speaking at the Women's March Voices of Resistance Rally about Disability Rights, January 2018

DSAM: Sara's Story

Sara and Liam

Down Syndrome Awareness Month gives me a beautiful opportunity to share not only my story but the stories of mother's who are raising children with Down Syndrome. It is important that we share our honest experiences in life in hopes of supporting, inspiring or generating genuine empathy for others.

Blake and Liam

Sara and I met because of our boy's 'designer genes'. It turns out that this "little something extra" comes with a whole host of benefits like instant connections with people with whom you may have otherwise not met. Sara is an Artist and Art Teacher. She is also an advocate for her son Liam and mother to the lovely Lupe. She is strongly connected to the Spanish speaking community and is a founding member of CCDSN (Central Coast Down Syndrome Network) along with myself and other fabulous mother/advocates you will meet over the coming weeks as I feature their stories.

Sara and I

Sara has graciously agreed to be the first to share her story in honor of DSAM 2015!

It’s Fall, time to start thinking about costumes and pumpkins and orange colored things.  Or pink cause it’s also Breast Cancer Awareness month.  For me, it’s also an “Awareness”month I never thought I’d be so connected to.  It’s Down Syndrome Awareness month.  There are SO many things that cross my mind every day and I could write for hours and hours. Some is positive and hopeful and some is difficult.  It’s the same roller coaster as with any child, but I definitely believe it to be more intense.  

I find myself sometimes on the defensive because I hear so many stories from others; hard stories about ignorant comments from strangers or low expectations from professionals. Part of me can’t believe it because for the most part we’ve had positive experiences .  I wonder what I would say in these situations.  Would I think on my feet fast enough to have a good response? 

And then there’s these interesting little things that happen.  The person that looks at Liam for a while- and I start to wonder what’s up- and then all of a sudden they hand him a balloon.  The preschool dad that shows special interest and then I find out he has a niece with DS.  I try to catch myself from thinking that the extra attention or the long looks are critical, but rather, that person may have a connection with Down syndrome I don’t know about.  It’s so easy to be quick to judge others and their actions or words, but we just never know where they’re coming from do we?

I wonder about the kids at school, years older than Liam that take a special interest in him, the grocery clerk that always asks after him.  I wonder if big sister notices and thinks that all little siblings receive this attention, or is it just her brother?  Is she ok with it?

Sometimes I catch myself wondering, do the comments of “Oh, he’s doing so well!” mean that he really is, or were their expectations so low that they are surprised to see him be like a normal kid?  It’s the “high” and “low” functioning thing that my friends with kids on the Autism spectrum deal with a lot.  I’m not even sure what I think of those terms.  I am constantly balancing between accepting Liam just the way he is and constantly working to help move him forward.  I guess both are necessary.  

I have learned, more than anything else, that I need to be my son’s advocate because no one else is as invested as I am in his well being.  I research and ask for things from professionals.  Me.  All the time.  It’s exhausting.  I’m tired sometimes of not being able to take the medical or educational experts advise at face value, it would be so easy. But I have to research everything myself too: I am his mom and I know him best.  I have files full of research and reports from audiologist, nutritionist, chiropractor, Ear Nose Throat Specialist, Endocrinologist, etc etc.  It never stops. And he’s basically a healthy kid!

So, here I am all over the place in my thoughts: up down up down. But Liam is doing well.  He’s in preschool now and he participates, and other kids play with him.  He comes home repeating little parts of songs.  I feel good about taking him to school and trust that he’s in the best place.  I knew it was a good fit.  When he strays from the line, other parents gently guide him back.  I didn’t have to say anything special, they just do it, because we lucked out with a nice group.  And the teachers encourage parent participation.  It’s hard to believe that if I had sent him to a Special Day Class it would not have been encouraged to stay as much as I am doing now (And I hate the meetings that constantly remind you of how delayed your child is).  That being said, if I stay to help, it’s with other kids, or helping with material prep in some other part of the room, because he doesn’t do as well when we are there!  He’s stretching his wings and testing his limits.

What I have learned with my son applies to all children, and myself as well: keep expectations high. Don’t put limits on yourself or others, keep reaching up!  And, hard work pays off.  It’s not easy, but things worth working hard for rarely are.

Thank you so much Sara for sharing your story with Evolution Revolution readers. Can you identify with Sara? leave us a comment! 

World Down Syndrome Day 3/21

Out to dinner on Valentine's day!

Today is World Down Syndrome Day!  It is the 9th anniversary of this global celebration. The celebration centers around the Down Syndrome community, every ones unique abilities and our global connection as human beings. Today I celebrate the core foundational values that should bind us the world over; respect and equality for all people.

It is also my 400th blog post. I am so proud that this post can be dedicated to a community that I adore and that I was welcomed into with open arms on May 13, 2011 when my son Blake was born.

Thus far it has been an interesting journey, an extra chromosome means an extra full time advocacy job, extra love and and extra rewards beyond my wildest dreams.

Our Family Rocking Our Socks for WDSD & Blake! 

I have learned more about myself in the last 2.5 years than I feel like I have my whole life. For example, patients was a virtue that I truly had yet to acquire, then Blake came into my life. I am always rushing and watching time flying by but Blake's extra chromosome has forced me to slow down and take the time to experience and enjoy. As a mother to both my children and step-children I am essentially looking at the world through different eyes. I all ready feel like a better person for knowing Blake. I feel very honored to have been given the gift of also being his mom. I look forward to the rest of our journey together and the journey of educating the world about people with Down Syndrome.

The community deserves respect, equality and above all LOVE. Again, everyone deserves these basic human rights. We should all make it a daily practice to embrace and celebrate our differences really, regardless of our abilities. Let's spend our time today, and all days just enjoying each others strengths and unique characters. 

"A free soul is rare, but you know it when you see it- basically because you feel good, very good, when you are near one of them"- Charles Bukowski (author)