Wednesday, February 2, 2011

Becoming Your Child's Advocate

Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.
Proverbs 31:8-9

When Nichole was born with Down syndrome I began to learn as much as I could about her condition. I felt the need to become an expert and help educate people. I was passionate and vocal...really vocal. I had become her advocate, but was I an effective advocate? This is a thought I have been processing lately, because in order to see positive results, I need to be an effective advocate.

You see, when Nichole was a baby, I was learning how to be the mom of a child with special needs. Out of my great love for her, I wanted others to see her just the way I saw her. I wanted people to understand Down syndrome and see the beauty I saw.

Looking back, I believe that sometimes my "all-out" ways stunted me from being an effective advocate and perhaps even approachable. I know I spent energy focusing on weather people used People First Language, or if they used the correct terminology or up to date information. I did not expect people to be at the same level of awareness I was, but I think maybe I did expect them to arrive to the place where I was once I had explained the ins and outs of Down syndrome. I wonder how many people felt overwhelmed by me.

I was learning to do life with Nichole, and the many layers of my life touched by Down syndrome. She is only 3 years old, and I still have a lot to learn. However, Down syndrome is so common for me, and for our family, that I believe I can look more objectively at what an effective advocate is. After all, I now have 2 girls to advocate for (actually, make that 3, Ellie needs her mama to advocate for her at times)

Why am I thinking about this right now? I just got the book "From Emotions to Advocacy" and I am learning about being an advocate in the school system. This book, however, has challenged me in the "personal level" advocacy, and the many times that I have allowed my emotions to take over. Effective advocacy happens when emotions are under control, it is hard to advocate when you are angry, or hurt by a comment or an action.

But being Nichole's and Nina's advocate means that I get to practice Proverbs 31:8-9. I get to speak up for Nichole and for Nina, for their rights, and for their needs. Why? Because I want to see Nichole and Nina's lives changed, I want them to thrive! Regardless of their disabilities, they have great potential, they have gifts and talents to contribute to those around them.


  1. You have it pegged!
    You're totally correct when you say that you need to put emotion and passion aside in order to be an effective advocate.

    I too learned that a while ago and it changed my approach and I've found I'm now a much more effective advocate for my children and for another close-to-my heart cause, animal welfare.

    While emotion and passion are great, they tend to make for a very overwhelming advocate. I think many people tune out when they feel cornered or like someone else is preaching to them.

    Further, I think those extremely emotional/passionate advocates can do more harm than good.

    For example, I just think of some the "stunts" performed by PETA supporters who are advocating for animal welfare. While this is a cause that I totally support and animal rights has been a lifelong passion for me personally, I don't agree with the "in-your-face" approach. I just don't think it works. People tune them out and they're written off as "maniacal," "extremists" or "nuts" -- and sadly, people tend to paint with a broad brush, so people may paint other animal welfare activists the same color (when this isn't necessarily the case.)

    I think a bad activist can do a lot of damage to the cause as a whole, so I think your point here is so, so, so important! Well said!
    I wish you luck as you advocate for your girls! It's perhaps the most important advocacy role you'll ever hold! :0)

  2. Anonymous3:42 PM

    Hey Ellen it's patricia...I'm sure you've noticed that i jump on your blog occasionally to browse in between phone calls in my job and you know I liked what you wrote about advocacy and I do think I'm still too emotional though waaay better than I was. How do you get past that?

  3. I think you'll make an excellent advocate for not only your girls, but for others as well. We need those first couple years to absorb all there is to know and learn about our children and those w/ Ds or whatever disability, in order to be effective for others. I love the proverbs you posted, too.


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