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3/21: World Down Syndrome Awareness Day

on March 21, 2013

Today is a special day in my life – 3/21 is World Down Syndrome Awareness Day. You probably know by now that my younger brother, Craig, was born with Down syndrome. We are 6 years apart, so having a brother with a disability has pretty much always been a part of my life. Craig, and Down syndrome, have greatly impacted my life, and so it is only fitting that today I pay tribute to them both 🙂

Little brother

Little brother

A little background for you – Down syndrome is a genetic condition, and it gives people 47 chromosomes, instead of the usual 46 — It is also known as Trisomy 21, as individuals with Down syndrome are born with 3 copies of chromosome 21 (hence 3/21!). Down syndrome is more common than most people think –  1 in 691 babies are born with DS, which makes it the most common genetic condition out there.  Most people don’t know that there are actually 3 types of DS :

  • Trisomy 21 – most well known, all cells have 3 copies of the chromosome 21
  • Mosaicism – only some of an individual’s cells have 3 copies of chromosome 21; individuals with this type may have fewer characteristics
  • Translocation – part of chromsome 21 breaks off and attaches to another chromosome (usually #14) – these individuals have 46 chromosomes, but have an extra part of #21

Chromosomes

The extra genetic materials causes delays in all areas of development. Some typical physical characteristics include; low muscle tone, small stature, upward slant to the eyes, deep crease across the center of the palm.

ok, enough science lesson 🙂

As I mentioned before, Down syndrome has been a part of my life for always, so I’m not really sure what life would look like if Craig didn’t have DS. So in honor of today, I thought I would present some life lessons and ways that DS has affected who I am.

  • My career – I chose a career in special education – therapy services , modified curriculum, CSE meetings, and integrated/self-contained classrooms have also always been a part of who I am. I think having a brother with DS has given me a unique perspective on the special education system, and I am able to view things from a sibling/family perspective, as well as an educator.
  • Patience, patience, patience – I credit Craig for being able to develop a sense of patience – it can be hard to wait when it takes him longer to do something – especially when you’re 8!
  • Unconditional love and acceptance – Craig loves people and accepts them, no matter who they are or what they look like. He loves unconditionally and would give you his shirt if it would make you smile. He loves to give out hugs, and he hates to see people upset. I wish everyone could love like he does.
  • Changes in my family – it’s kinda cool to see the way that Craig has changed our family – my dad is now an “expert” in financial planning and special needs trusts, my mom decided to be a full-time stay-at-home Mom after he was born, due to his many needs. Both my parents, myself, and my older brother are strong advocates for those who have special needs. It makes me proud to watch my Mom and Dad parent my brother – it’s a lot of hard work.
  • Appreciation of the little things – the littlest accomplishments can be a huge thing in our world, and every moment is something to celebrate.
It's the little things

It’s the little things

I can’t say that it’s always been rainbows and sunshine — you know that I would be lying if I told you that. To be perfectly honest, it’s been a long, hard road. And sometimes, it can be very lonely – many people can’t understand what it’s like to be a typical sibling of someone with special needs. That would be a totally different post! Life is very different, and the challenges can be daunting — as Craig continues to get older things change, and as family, we face new and different types of issues. But to that end, it has only made us a stronger, close-knit family unit. Craig has certainly enriched our lives.

Craig is an amazing human being, and he makes me proud to be his older sister. I know that he always has my back, and that he loves me no matter what. He makes me work really hard to be the kind of role model that he looks up to. He makes me  so much more aware of people, their individualistic characteristics, and so much more tolerant of these differences.  Please be kind to others today — maybe look at someone a little differently, or take some time to get to know someone new. Enjoy some of the little things today. Practice Patience. Thank that person who is bagging your groceries. He could be my brother.

My brother, Craig, has Down syndrome. And I wouldn’t have it any other way.

Myy biggest fan

Mybiggest fan

Sites to check out if you’re interested in more info:

  • National Down Syndrome Society: http://www.ndss.org/
  • Down Syndrome Aim High Resource Center: http://www.dsahrc.org/ (this is an upstate NY nonprofit, and I currently sit on the board)
  • Enjoying the Small Things Blog: http://www.kellehampton.com/ (a mom, and photographer, who is a mother to 3 small children – her middle child was born with DS – she inspires me every day)
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4 responses to “3/21: World Down Syndrome Awareness Day

  1. what a great way to spread awareness, this is a beautiful post

  2. Love this! I run a community based day program for adults with disabilities and this is such an important day! Thanks for posting

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