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?

DSAM: Danny & Sandy

In honor of Down Syndrome Awareness Month I teamed up with my friend Nicole to do a cute themed shoot of our children Blake (6) and Amelia (4). With Halloween just around the corner we channeled one of our favorite musicals, GREASE!

There are so many misconceptions about our kids still exists in our society and it is my hope that through advocacy, education and visibility people can start to shift their focus from our children's "Disability" to their ability. Let's start celebrating differences!

Is having a child with Down Syndrome challenging, difficult and sometimes hard? YES

Is having children challenging, difficult and sometimes hard? YES

Is it worth all of the struggles, effort and challenges for our children with Down Syndrome? 1,000 X YES!

Is raising children worth all of the struggles, effort and challenges? 1,000 X YES

See where I'm going with this .....

Our two little on set diva's were challenging to wrangle and capture on camera but the results were well worth it, just like them!

Nicole, Amelia's mom said "Amelia has the same wants and needs as any other 4 year old. Being Amelia's mom has given my life a purpose and has fulfilled me in ways I didn't think possible. She is also just a kid!"

The most famous lyric in the film, "You're the one that I want" Is perfect for our children with and without Down Syndrome. Obviously a different context but I have to say nothing could be more appropriate on Down Syndrome Awareness Month. Blake is exactly the son I want and the son I never knew I needed. He has made me a better human and mother.