Tuesday, January 19, 2010

Finding My Voice

Growing up, I was labeled a shy child. As a young adult, I usually let everyone else do the talking, and I was always uncomfortable in social situations. When I moved into the business world, the thought of having to speak in front of a group of people could make me physically sick.

The fact that I am no longer like that I owe completely to Ashley.

I knew before I ever brought Ashley home that I would have to be her ‘voice’. I would have to learn to speak in front of groups of people, often hostile groups. I would have to learn to stand up to doctors and therapists and sometimes question their decisions. I would have to learn to seek out what she needed and then be bold in getting those things. I would have to become her lifetime advocate.

Unlike when I was forced to speak in front of a group of people in my business community, I had no time to think and worry about my speech. I had no time for the jitters to take hold. Rather, Ashley needed my voice, my advocacy, and hesitating would not get her what she needed.

I was immediately thrown into fighting my local hospital when they chose to treat her like a ‘Medicaid’ baby and deny her and me the same considerations someone with expensive insurance would receive.

Less than 6 months about bringing her home, I had to begin my battle with our school district, fighting from the time Ashley was two years old and continuing even today to get her the appropriate school services. That battle took me to speaking before the school board, arguing in IEP meetings, trying to mediate our disagreements, and finally to Federal Court several times.

I’ve fought our state’s Medicaid system to provide for Ashley’s unique needs – a personal care aide who knows sign language and needs to be paid for that skill; a bathroom that was accessible and conducive to developing her self-sufficiency; and ongoing medical supplies when they wished to place limits.

I’ve stood before our state’s General Assembly, and in front of them and a few hundred other people in attendance, have told Ashley’s story. I’ve learned to lobby for people with disabilities and how to fight when their rights are ignored or violated.

In short, knowing that I need to be Ashley’s voice has helped me find my own voice. I can’t say that the jitters are gone completely, but I can say that I am no longer labeled shy, and I can say that I believe I am making a difference both for Ashley and for others.


Terri said...


MMC said...

Funny you should write this. I often think of how shy I was as a child and young adult. Public speaking? Please. It's hard to speak at all when you can't breathe.

A friend did my astrology chart shortly after the Blue Jay was born. One part of it described me perfectly, very shy, uncomfortable around groups of people, etc. But then it went on to describe the completely opposite personality - verbally takes over meetings, an advocate, always speaking up (sometimes I think I really need to learn when to shut up!)

I thought it was a pile of crap, describing two polar opposite personalities. Guess what? It was 100% right on, describing my life before and after we discovered the Blue Jay's challenges. Funny thing is, I am still very shy inside. Fine one-on-one but put me at a party with people I don't know and I'm not just the wallflower, I am the wall.

Terena said...

You're doing a fantastic job!

Sue said...

I think that it is so sad that when we need the most help dealing with, healing and loving a child with additional needs, that we have to go into 'fight' mode instead. If you didn't have a glass half full attitude you just wouldn't get through it would you.