Wednesday, December 24, 2008

Welcome to SibsNY!

The holidays seem like a wonderful time to begin this blog for, by and about the siblings of individuals with intellectual and developmental disabilities. For me, the holidays have always been about family, and my brother, Peter, plays an important role in ours. Peter is two years my elder and when I think back to childhood he was my very first friend. Growing up, I knew that my brother was "different," but I did not have the words that I have today -- Fragile X Syndrome -- to describe why. To me, Peter was an idol, pest and constant companion. He was a source of anger, frustration and jealousy, but also relentless support, silly fun, joy and complete camaraderie. He was my big brother, and together we played, fought, laughed, cried and went through a variety of phases as we reached different stages of life. Today, we are both in our 30s and share a very close, sometimes exasperating, unconditionally loving relationship. My hope in starting this blog is to create a place for the siblings of individuals with intellectual and developmental disabilities to share information, resources, support and stories so that they may play a positive role in the lives of their siblings and families -- while enjoying their own lives to the fullest. The holidays are about family. I cannot think of a better time to celebrate siblings and the unique bonds we share.


  1. I could not agree with Emily more. We are focused on family this time of year. My sister Buffy comes home twice each year and one of those times is Christmas. I, like Emily, have always known Buffy needed a little extra help but as a child was unable to tell you why. Today I am determined to help Buffy in any way I can to be as independent as possible. I want her to lead a healthy and happy live despite her challenges. My sister has been diagnosed as profoundly intellectually disabled. She can not take care of herself and is non-verbal. However Buffy most certainly finds other ways to communicate with her family. Growing up with Buffy was not easy but our parents worked very hard to ensure that all three of us received equal time and attention. We fought just like any other siblings despite this today Buffy, peter, and I share a very close relationship. Buffy is four years older that Me and My brother Peter is five years younger. This is a rare time of year when we can all be together. Having Buffy at home is never easy but we share much joy and laughter during this time. It is a unique bond we share and as Emily mentioned one that should be celebrated. I look forward to this time and the chance it gives us to create more happy memories we can cherish for years to come

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  3. Hi Emily

    I have done a little blogging on which is a political website that gets alot of traffic. I hope to raise awareness of issues that effect people with disaiblities and their families. We need to change our screwed up system.

    Congrats on the blog and joining the 21st century. Love Nora

  4. Hi Emily! I just joined so I can officially "follow" your blog! I am new to all of this, so I feel even further behind! I know there is a way to connect your blog to your facebook profile, if you are interested. I don't know how it works, but I know Maria does it. Anyhow, great start! Thanks for sharing it! :-)

  5. Congratulations on starting this blog! I look forward to following the conversations that will develop here. This year I decided to spend the holidays with my sister-in-law and her husband. It is my first celebration of Christmas without my brother Ben, who has Down syndrome, and I am missing him greatly.

    We decorated a big pine tree with ornaments while listening to holiday-themed music. I was flooded with memories of making ornaments with Ben, decorating our family's tiny plastic tree, and playing the piano while Ben sang Christmas songs at the top of his voice while wearing red and green felt reindeer antlers on his head.

    Christmas without my brother just isn't the same, but at the same time I realize that I need to establish my own family traditions with my new husband, and spending time with his sister and brother-in-law is part of my new life as an adult.