When I used to think of the word advocacy, I would think of a person who was really well known taking a stance about something, or a person in the news, or a person, who’s name was easily recognized.
Then I had a child with special needs.
And my thoughts about what makes an advocate changed. I learned that an advocate is simply a person who is really working hard for the needs of someone they love and care about. Someone who wants the very best for that person.
I became an advocate the day Elizabeth was born and for so many of you who have a special needs child, you did as well.
I look back at Elizabeth’s life and I see times where I was a really good advocate for her and I see other times when I could have been so much better. When I could have said something that would have made a difference or perhaps not agreed to something that I did not feel good about. I guess I learned as I went along on our journey.
I think that learning how to be a strong advocate is not something that comes naturally nor is it something that comes easily. It is a learning process.
Because of this, I learned so much during my early years with Elizabeth.
Does not have to be loud to be effective- a calm, determined demeanor can help you be heard better. When a previous superintendent told me to “hand over Elizabeth to the experts or we would ruin her” I did not get loud in my voice, I spoke confidently and made sure I was understood.
Does needs to be consistent- I have found that consistent visits, check ins, communications and discussions keep everyone in a place of understanding. Hearing a teacher, one time say “they got it” in no way means they will know what to do when a new situation challenges your child.
Does come in many forms– Early on, I thought talking was the only/best way. But I learned that inservices, emails, phone calls and letters are all ways to make sure your child is understood. And that all parties involved make a TEAM for your child.
Does make a difference- When something went wrong in the early years, I often wondered if what I was doing mattered. But it does! Each and everything we do for our children matters. If it is as simple a thing as the gym teacher understanding that Elizabeth needs a buddy to help her. It all matters.
I am writing this blog today because I have a dear friend who is amazing with her son who has autism. As well as being a wonderful advocate. She recently had a tough experience with someone and their words about her son. I want her to know her work made a difference for her son.
I hope these words are ones that touch the heart of someone who might need to read them. Please know that it all matters…because it does!
I wish everyone a peaceful month.
Michele Gianetti author of “ I Believe In You: A Mother and Daughter’s Special Journey” and “Emily’s Sister”