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: I Dream Of Jeannie

Down Syndrome Awareness Month (DSAM) is coming to a close but not before I have the opportunity to share this years themed collaborative images. My friend Nicole and I worked together to bring you Danny and Sandy with our 'Grease' themed shoot last year (read it here). This year we chose to pay homage to the first episode of the classic show "I Dream of Jeannie" that originally aired in September of 1965.

The episode is that of unique discovery and Nicole and I thought this makes a fabulous analogy pertaining to having a child with Down Syndrome.

 Blake (AKA Major Nelson) stumbles upon the surprise of a Genie (Well, Jeannie)bottle washed up on the shore where he is stranded, alone. Our diagnosis of Down Syndrome came as a surprise and instantly I felt alone, stranded in an unknown land. 

I quickly came to find out that I had a unique and beautiful tour guide and I most certainly wasn't alone. What a beautiful community we instantly became a part of. I have connected with local mothers like Nicole and mothers from all over the world who were also once stranded on their own unique islands. 

Our children land into this world, in their unique form with their gifts and abilities. Nicole makes a great point about her magical daughter Amelia, that this world wants her to keep her magic hidden and wants her to be like everyone else. But Amelia, Blake and everyone else in their community can't help but share their magic with everyone they come in contact with. 

As a community we should not have to explain our children's worth, justify their existence, or constantly fight the systems that were designed to help them. We do still, every day. We also continue to advocate, educate and start meaningful conversations in an effort to share the magic we experience as well as the challenges. 

This adventure is full of twists and turns. No day like the last. Just like raising any other children. 

Society places limits on our community based on antiquated, myths and a hyper focus on what they CAN'T Do. Instead, imagine you looked at someone with a disability and saw only their strengths? or what they love to do? or ponder how you can assist them in achieving their individual dreams and goals? I am under no grand delusion about my son and his present levels. He will never be an astronaut like Major Nelson but he may love to study outer space, take an internship or job at NASA in another capacity if that is what he wants, or simply love space movies. The sky is the limit and I love him to the moon and back no matter what.

People with Down Syndrome want what everyone wants: To love and be loved. 

They wan't to be understood, respected, supported and given opportunities, just like you and I. They want to be meaningfully included in their communities, classrooms and conversations.

The celebration of differences is long overdue in our world. Why would we want to be like anyone else? (boring) Our humanity is what binds us in similarity, our differences are what help us evolve and grow to be the best version of ourselves. This is a quest that is never ending, for all of us.

Never loose sight of the magic in others or in yourself.

Siblings: The Unsung Hero's

Down Syndrome Awareness month (DSAM) is October and for the entire month  I usually bombard my social media feeds with facts, blogs, and images in an effort to raise awareness about my son Blake and his community of people with Down Syndrome. I actually do this all year round, so it is always "awareness" and education month for us. This year for DSAM I want to focus on the not so talked about topics like siblings during this awareness month.

In the past Blake's siblings have written a blog that was feature on The Mighty (Read here) and expressed how they felt having a brother with Down Syndrome. Today it's my turn. I also will include the thoughts and perspective of another mom, Nicole in our community who is a few years behind us on this adventure.

Just like everything else in life there are both positive and negative aspects to being a sibling and I feel both sides are more enhanced when that sibling has a disability. In my home the highs are really high and the lows are devastatingly low. My daughter is along for this roller coaster ride. As mother's we do our best to divide our time if we have multiple children but to be honest my son gets more than his "fair" share of my time and energy, because the nature of his disability requires more. I know this leaves my daughter feeling frustrated and hurt as she approaches her tween years. She has expressed it to both my husband and I. As she is aging, I know she also has fears and concerns for his future, much like I do. She asked me, "what happens to Blake when you and dad are gone?" not to long ago. I explained that we are working for Blake to be independent and live alone but reminded her that he will likely always have a need for support. I don't want her to feel pressured to have to be his sole caregiver in the event of our deaths. It may seem premature to be discussing with a 10 year old but anything can happen in life at any time. I want her to know that she can care for Blake if she chooses but it is not her responsibility.

Fears and frustrations aside she is  his biggest fan, my greatest helper and an amazing big sister! I know that his presence in her life is making her a better, more patient, compassionate and understanding young lady. Blake has opened a whole new world for everyone. We have met so many people we would have not otherwise, attended special events, and participated in activities in a way we wouldn't have been able to otherwise. The benefits are not lost on her, neither is the joy he brings or the love they share.

She is and always will be my SHEro .. and his.

Nicole shares her perspective ...

With Down Syndrome awareness month coming to a close, I  feel it necessary to pay homage to the unsung hero in my house. This would be my 6 year old (typical) daughter, Olivia. Olivia is less than 2 years older than my daughter with Down Syndrome, Amelia. Like most parents with two or more children, we struggle to divide our attention equally. The fact is that Amelia needs us more, plain and simple. That is hard for a six year old to understand, but Olivia does. Amelia has odd behaviors that make even the simplest tasks, like walking one block to school, difficult and time consuming. For the most part, Olivia seems to have unlimited patience with her sister. Olivia and Amelia’s relationship, like Amelia, is more typical than different. They fight, they play, they fight some more, they love each other.  They are siblings. 

Overall, I think having a sister with Down Syndrome has made Olivia more patient, kind and selfless. This year Olivia and Amelia are attending the same school. I asked Olivia what the best part of going to the same school as Amelia; her answer? “Getting to hug her everyday day at lunch”. Olivia makes my heart full. When I asked her what the worst part was; she responded “ Sometimes Amelia hugs me too tight”. 

I guess for Olivia, she only knows what it’s like to have a sister with Down Syndrome. I’m sure that Olivia notices her friends with typical siblings play together and I often wonder if she’s jealous, if she wishes that Amelia didn’t have Down Syndrome. If she does, she never lets it show. Olivia just accepts Amelia how she is...her sister.

Cheers to raising strong girls, supportive siblings and SHEro's!

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.

DSAM 2016

I can't believe that another year has gone by and we can officially begin the celebration for Down Syndrome Awareness month. October is also Breast Cancer Awareness month and I will be sharing lots of inspiring and meaningful stories of courageous women I have the honor of bring connected with.

To kick off DSAM 2016 I have partnered with The National Down Syndrome Society and started a campaign to celebrate differences, promote inclusion and raise funds for this amazing Human Right's Organization.

My goal is to raise $5,000 by the end of the month in support of NDSS and all the great work they do for The Down Syndrome community and families like mine. The campaign is inspired by my 5 year old son Blake! 

DONATE HERE

Any size donation is helpful and appreciated. No donation is too small (or big!). If you are unable to donate please consider sharing the link on your Facebook, Instagram, Twitter, Blog or email your contacts.  You never know who will be come the next Parents, Sibling, Cousin, Friend of someone who has Down Syndrome. Blake wasn't diagnosed until after he was born in May of 2011 and our world was forever changed!

Together we can create an inclusive world that is full of love, respect, community and celebrate our differences. Lets face it, we all have differences, challenges and ABILITY! There is room for all of us to shine and support one another!

How will you celebrate Down Syndrome Awareness Month?