Thursday, February 18, 2010

The Effect Down Syndrome has on Siblings

When Nichole was born and diagnosed with Down syndrome I wondered what would become of Ellie having a sister with Trisomy 21. As a matter of fact, this was one of my biggest fears. But instead of telling you about our experience of 2 years I want to share with you what a sibling has to say about this.

My friend Adrienne shared what her daughter Regan wrote so parents can see the effect that our children have on their siblings. Regan (who is 16) applied to a fine arts summer program and had to do an essay based on a quote from Oliver Wendell Homes...on that one moment that changed you.... here is her essay:

"When I was 14 it finally hit me. Even though I have always been around individuals with special needs, their effect on my life wasn’t apparent until that moment. That’s when everything changed. I wanted to give back to them, love them unconditionally and teach them.

What brought me to this revelation is the fact that I have a younger brother who was born with Down syndrome. Not only does he have Down syndrome but he also has Autism and a lot of vision impairments like Cataracts and Glaucoma. The day my brother was born, life changed for me. I didn’t really understand when I was five how my brother was going to make an impression on my life in so many ways, but he did. He taught me the right way to treat others both with and without special needs. Because of him, I am a better person. Russell taught me the idea of loving everyone, unconditionally.

That is how my brother has impacted my life and inspired me. I grew in such a way that my desire is to work with children with special needs. I want to be a positive impact in their lives, because I have seen over the years, they don’t always have that. To be given the opportunity to impact children and their lives would be an honor. Even if it was just one child, I’d be the happiest person in the world. I feel I have gained a lot and have so much to give because of my brother. I am Russell’s voice, and anyone else who needs one. I didn’t realize it until I got older, but I had already been doing this throughout my life. Even now, when I’m in school, I try to show my peers through my actions to treat everyone with the dignity they deserve. I’m a friend to everyone who needs one. Russell doesn’t speak and barely communicates, and lives with so many hurdles, yet he taught me all I need to know about treating others and being happy. I would feel like I let him down if I didn’t teach others the same things he taught me, because I have the resources he doesn’t on his own.

Having Russell in my life has helped me to be the best person I can be. His infectious giggle reminds me of how his birth changed the direction my life was headed in. Without him, teaching might not have been in my future. Without my brother being a part of my family I wouldn’t have had the opportunities to advocate for others. Russell is my daily inspiration to continue to be that person who helps others. I will try my hardest every day and will keep trying until I die to make Russell proud by the lessons and ideas he has taught me through the years. “Thank you Russell for coming into my life and changing my life forever.”


  1. That's so beautiful -- thank you for sharing. I'll bet there are thousands of other sibs to someone w/ Ds out there that would nod their heads after reading that.

  2. I happen to be a sister of a Downs brother also! As I read all I could do was relate to my brother! I have about the same feelings!
    I was two when my brother was born, so I didn't understand that he was different, nor do I even remember. When I began to realize he was different than everybody, I still wasn't too sure what to think about it. At a young age I questioned God "Why would you give me a him as a brother and not a normal brother?" Little did I know how much he would change my life!
    During that time of uncertainty, he was diagnosed with Leukemia (Cancer). I was very young myself so I didn't understand why everything was going so bad. I began to become jealous of him. I thought he got so much more attention from my parents and others. I thought I was pretty much forgotten. Don't get me wrong, I loved playing with him and did not hate him, I just had my moments when I didn't fully understand.
    As I grew out of that stage, I began to actually realize how special he truly is! He is such a light to my world! I get compliments all of the time now about him!
    He can make anybody smile and laugh! He has such a sweet spirit on him, that makes me want to love others more and more. Every Sunday at church, he will go up to the front row during offering time and hug my grandparents and the pastor. He loves the Lord and at times he even goes up to the altar for prayer. Last time, a couple months ago he went up and asked them to pray for his speach, so everybody could understand him.:-)
    So girl, I know we're your coming from! They are such a blessing and couldn't ask for a better brother! I'm so thankful!


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