Down Syndrome Awareness Month

October is a month full of raising awareness for many important causes, Breast Cancer, Depression, Autism, and dozens more. For me the MOST important issue to raise awareness and promote education for is Down Syndrome (DS). This of course because my son Blake has and extra 21st chromosome.

There are many things I want to discuss between now and the end of the month so bear with me. The regularly scheduled fashion and style programming with appear intermittently between my posts about Down Syndrome and my experience thus far of being a mother of a son with perceived 'special needs'. I say perceived because everything is based on individual perception as live is a very subjective experience.

You can read the first story I ever wrote about Blake HERE

(and the follow up a year later HERE) 

Since Blake was born our family has had a warm welcome into the Down Syndrome community via organizations like the National Down Syndrome Society (NDSS) as well as from parents all around the world thanks to technology. Turns out this 'little something extra' has meant a LOT more to our family than I could have ever imagined.

During the coming days I will talk about Blake's birth, receiving the diagnosis, books and websites that have helped me navigate my new world, the up's and down sides of DS, social misconceptions/stigma, other peoples inspirational stories and more.

In this world where information is so easily accessible it fascinates me that people are still so UNeducated when it comes to DS.  Let's start my series of posts out with a few FACTS.

What is Down Syndrome? Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Blake has Trisomy 21 (nondisjunction).

*There are three types of Down syndrome: Trisomy 21 (nondisjunction) accounts for 95% of cases, Translocation accounts for about 4% and Mosaicism accounts for about 1% 

This is an image of his actual chromosomal karyotype  from his test when he was born. Note the extra copy of the 21st.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.Some estimates put the worldwide population of people with Down syndrome at more than 6 million.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today. 

With early intervention, education, proper health care, nutrition, persistence, opportunity and most of all LOVE people with DS can reach their full potential and live happy fulfilling lives. As parents of ANY children this is all we want for our kids, to be happy. Being a good parent is a choice, a lot of sacrifice and hard work but the results far outweigh the efforts.

I am excited to share my journey with Blake with you dear reader and I'm first to admit that I am still learning and relatively new to this community (Blake is 2.5) but hope to be a voice of advocacy for Blake and all other children/families who have been gifted into the Down Syndrome community.

GET AN EDUCATION - WATCH THIS

I read a statistic somewhere that 38% of Americans know someone with Down Syndrome.  

Do you?

Please share your experiences and stories in the comments!

A World DS Celebration!

Today is World Down Syndrome Day ~ Cleverly selected on March 21 (3:21) as to represent the 3 copies of the 21st chromosome! 21 March 2012 marks the 7th anniversary of World Down Syndrome Day and for the first time TODAY will be officially observed by the United Nations.

The most important message of today is that people with Down Syndrome are more alike than they are different. They deserve the same respect, opportunities and celebration of their uniqueness in the same manner that each and every other unique human being does.

You can read our story HERE Posted on our friend Tori's blog EdiTORIAL from October's Down Syndrome Awareness Month!! Tori's Down with inclusion and acceptance! xo

I feel that the best we can do to promote acceptance and tolerance is to PRACTICE IT in our daily lives. My 4 year old watches and listens to EVERYTHING and takes her cues from what I model for her. She likes what I like or approve of and "dislikes" what I have an adverse reaction to (ex: Spiders). Educate yourself about the world around you. Not just people with DS but humanity in general. Different races and customs, religions, developmental disabilities, and MORE. We live in an amazingly diverse world that is ripe for discovery. I don't have the naive expectation that we will accept EVERYTHING that this diverse world has to offer but we can all RESPECT it and acknowledge each others differences as just that, Different .. not WRONG. I for one am happy when I am faced with something unique or set apart from what I call the "Herd Mentality".

Words cannot convey how my life has changed over the last 10 months. The evolution and growth has been astonishing to me and all thanks to a little boy with a little something extra! I know Blake will continue to be my greatest teacher and I look forward to all of life's adventures with him and our family.

How will you teach your children? your friends or family? about tolerance, acceptance and LOVE?

How will you CELEBRATE diversity today and all days?

Visit World Down Syndrome Day Page & Support the National Down Syndrome Society

Check out my fried Kelle's Blog & her NEW BOOK BLOOM!

Grab This Button

Blake's Story: DOWN but not OUT

In honor of National Down Syndrome Awareness Month I teamed up with my friend and loving mother of 3 Tori Spelling and contributed my story to the Raise section of her eMAG EdiTORIal yesterday.

Read My Story: DOWN but not OUT HERE


Blake 2 days old - Special Care

This was my reality in the first week of Blake's life. He fought to be here and it was his courage that inspired mine.

As I look back on the last 5 months of Blakes growth I am forced to think of my own. Never has my character been so tested, my constitution so tried or my values and belief system so rocked. What I have realized is that our energy, collectively is best spent celebrating our differences and not judging them. We are ALL guilty of it (Myself included). What a boring, generic world we would live in if we were all the "same" or "similar". Where applicable apply the label of LOVE only.

The comments I have received from my family, friends and most of all virtual strangers in the last 24 hours have been overwhelming to say the least. I cried a lot yesterday while reading the public comments as I realized how many amazing, genuine, good hearted people in there are in this world, more than enough to drown out the negative, ignorant ones.

I look forward to what the future will hold with Blake and the rest of my family. A future that is unknown for all of us. We will enjoy our moments together confident in the fact that the world may knock us DOWN but they will never take us OUT! This is just the first you are hearing from me but I fully intend on becoming a LOUD voice of advocacy and information as I strive to give children with DS a voice. Sharing facts, and feelings in an intelligent and empowering way! I am PROUD of my son's extra chromosome ... Turns out thankfully MORE is MORE xo


"Every human being is intended to have a character of his own; to be what no others are, and to do what no other can do." - William Henry Channing


For more information about Down Syndrome visit the NDSS website.

Want to read more personal stories from the DS community? Many mothers reached out to me yesterday and shared their virtual spaces of LOVE!

Kellie: Enjoying the Small Things
Christine: Brody's Buddy Ride
Amy: GiGi's Playhouse
Kayla: Loving Austin
C. Smith: Results Not Typical
Amy: Mayson
R-WORD: Pledge to choose your words wisely and kindly!

Julie: Nina's Story