Well, despite my biggest fear of talking in front of a group of more than 3 people, I managed to pull some words out of my hat in front of a room full of doctors, hospital administrators and other hospital staff. Jeez. I started to have a panic attack just prior to talking, but instead of going down that route, I remembered how important this is. How the responses from so many of you as responses to my post yesterday, via email, phone, or in recent conversations have meant. Words came out of my mouth. I hope that they made sense. When I started to speak, people seemed to listen. I hope that they heard what I said. There were a couple of other parents there and the people who were a part of the group that were parents also had a great deal of important information to consider. I learned a lot from them. I hope that they learned from me, too. I really appreciated the environment. The openness. The feeling of sharing and of mutual acceptance and appreciation of each others ideas. I know that I’m naive but I am liking that about me lately. Yes, I do get down because things don’t work out sometimes, but I like how I have come to see things simply and clearly. Believe me…dark days are very dark, but there is light here and I’m totally going with it.
I think that the biggest complement was that one of the folks from the group followed me out and told me how thankful she was that I was talking about this. She was in tears and told me that her family is going through this right now. An autism diagnosis for their child. My heart went out to her. I know that pain. It stings. It comes and goes. Last week, it stung like a thousand wasps coming at me repeatedly, mercilessly…but somehow in that I was able to reflect and gather strength for today. Funny how life turns on a dime like that.
One (most delightful) person of whom I admire greatly, asked me earlier today about how I felt about the lack of anonymity and how I felt about the panel process in general. That gave me great pause. I was so glad to get that before I went into the meeting this morning because I was able to think about the perspective of what others might be looking for. A different lens. I was able to gather my thoughts and realize that I don’t have any reservations and feel confident that my words will be heard. Even if the entire panel doesn’t take my opinion to heart, that I know that one person will hear something that I will say, and one small thing will change that will help a family who is accepting autism into their lives and their level of health care and quality of life. That is my hope!
Later this week I’ll get to hear the panel’s thoughts and responses to how they might incorporate our concerns expressed today into their plans for their new clinic. I’m so anxious to hear what they have to say. Lets keep our fingers crossed.