How to Be an Effective Advocate for a Child with Special Needs

Guest blogger Ellen Stumbo is learning how to be an effective advocate for her children with special needs, thanks to some resources she's passing along.

Guest blogger Ellen Stumbo has been thinking about an issue important to parents of kids with special needs: how to be an effective advocate. In today’s post, she shares about how her perception of effective advocacy has changed and mentions a good book put out by Wrights Law, an organization that trains parents to advocate for their kids in school.

Am I an Effective 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.

Advocacy in the Early Days

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.)

Advocacy Now

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.

Advocacy to Change Lives

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.

How Have You Changed as an Advocate?

Can you identify with the change Ellen has been experiencing lately? I certainly can. What are some ways you’ve changed as an advocate? What tools and resources have you discovered? Share your wisdom by leaving a comment.

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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