Monday, October 29, 2018

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.

Sunday, October 28, 2018

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!