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 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.”

Words are powerful. Words hurt.

Retard. Retarded. These are the words that have caused much controversy over the last weeks. The buzz started with Rahm, Palin, and Rush. Some have said we have pushed the limit in what is “politically correct.” But is it? Is it wrong or offensive to use the r-word? Is really a damaging word?

I want to tell you about our family, and I will share with you some personal and raw parts of our journey. I hope after you read this, that you will understand the power of words, and that some words, even when not intended to be harmful, can slowly destroy.

When my daughter Nichole was born, her diagnosis of Down syndrome hung over me like a heavy, wet, blanket. I clung to me. It robbed me from any feelings of love and I wondered if there was a way out. My motherly instinct was nowhere to be found. I went through the motions of holding and nursing (pumping actually) because I had to, not because I wanted to. I cried. I cried several times a day. There was fear in the unknown; there were questions about the future, about our family and my oldest daughter.

Down syndrome. I knew many things about Down syndrome, and I knew of one word that would be used to describe my daughter. It was the R-word. Retarded.

I knew that someday, someone at her school might say to her, “Hey you retard!” With many laughs to follow such a comment. Or we might hear someone explaining her behaviors to another by saying, “She is retarded.”

There was something I knew about the word retard or retarded. It is a word used to describe something or someone that is stupid, ridiculous, or inadequate. It is a word used to make fun of others, to point out their flaws, or to put them down. It is a word used to destroy, to tear down. Was this really a word that would describe my daughter?

Thankfully, it did not take long for me to discover that my daughter was not what the word retarded means. My daughter was and is beautiful. She is not stupid, she is not ridiculous, and she is not inadequate. She has taught me more in her lifetime, than I had learned in mine. She has been the greatest teacher I have had. She has inspired me more than anyone else I know. She has changed my life, the lives of our family, and of those that have gotten to know her.

My daughter has the ability to touch hearts and change lives. A quality that cannot be said of all people. She has shown me more love, joy, kindness, gentleness than I had ever known before. Indeed, her life has great meaning, great value, and she has so much more to offer.

And yet, the word “retard” continues to hang over us. Why? Because it is a word that continues to be used in a derogatory way. It hurts. It hurts our family. We fight this word, every day, every single day. We fight this word because everywhere we go, her characteristic features of Down syndrome set her apart. The stereotype that the word “retard” has perpetuated is engrained in our society, and so we fight, because she is so much more. She is full of potential, love, and joy.

There are obvious ways in which the r-word is offensive. But when it damages us the most is when it is said in ignorance. The facebook status or the teasing of a friend. It is not meant to be offensive, it is not meant to hurt. But even if it is not said with ill intent, it does. It hurts, it destroys.

My daughter is not stupid, ridiculous or inadequate. A word that has been used to mock people with intellectual disabilities makes other like my daughter wake up and face a world that has deemed her unworthy and incapable. Incapable because of a word. A word that is not who she is. She is capable, she has gifts, she has talents.

So next time you hear the R-word, next time if you think you might be about to say the R-word. Please stop and think. Think about my daughter, think about others that like her stand strong against the tide of the word that has labeled them in such a negative way, yet they have so much potential. As her family we stand with her, we stand strong, we fight.

Will you stand with us?

You can take the pledge to end the r-word by clicking here. (if you do, will you leave me a comment and tell me you made the pledge?)

I wrote this post a year ago when we were getting the MR waiver for Nichole, thankfully, it has been changed and is now called the ID waiver. Click here to read it.