This was posted by an adoptive mom with a son with FAS. It makes me cry but it is an important message. She has given everyone her permission and encouraging everyone to pass this along to everyone they know. EDITED TO ADD: THE AUTHOR ENCOURAGES YOU TO PLEASE COPY, PASTE, POST, FORWARD, AND PASS THIS TO EVERYONE YOU KNOW.
Just a quick reminder of 9/9 everyone. I was asked to speak at our local FAS Awareness Day, but Ben has a neuro appointment and considering what's going on, I can't put that off. This is what will be read in our absence though and I hope someone takes it to heart. It would be so wonderful if the news media would cover it this year, but they so rarely do. Anyway, here's our speech:
Hi. I'm Ben. I'm 4 y.o. My momma says I was born drunk and with meth in my body. I don't know how or what that is, but it must have been bad because the doctors didn't think I would live. I was tough though and came home at only 4 days old and I was a premie. At a week old something really bad started happening. I couldn't stop shaking and I stopped breathing. My momma was crying at the hospital. They called in some guy who was doing something call "last rites". I came home two weeks later. They told my momma I was blind, would never sit up, walk, talk and all that stuff. Well I proved them all wrong 'cause I do it all. But I still shake sometimes and forget lots of stuff and then I get REALLY mad but I can't control it. Momma says it's something to do with seizures and that's why once I learn something I forget it. It's big stuff too, like feeding myself, dressing myself, and even walking right. I have to use a wheelchair part of the time now. I didn't used to. I think it has to do with being at the doctor about a year ago and momma started crying again. They said these seizure things will be terminal, whatever that is. The doctor said something about the prenatal exposures have fried my neurological system, the seizures are going to all new parts of the brain and gaining in intensity all the time. Momma asked them how long it would be and they weren't sure. I hope this terminal thing doesn't happen anytime soon because it always makes momma and daddy cry. My sister gets very mad sometimes about all of this and says she doesn't like someone named our birth mother for hurting me. I don't remember anyone hurting me, but like I said, I forget a lot of things. Anyway, ever since the doctors told my momma about that terminal stuff, it's been harder to do things. I'm in a wheelchair part of the time now and I used to be able to run all day. I have a special feeding chair too. I just got it and it's the first time in over two years I can feed myself. I've also started sleeping a lot. I told momma once I was getting tired. She knew what I meant, not the sleepy like I need to take a nap tired, but like my body is tired and it's hard to keep going. Momma sits by my bed a lot at night and watches me. I wonder if she's thinkin' that terminal thing is going to happen. I don't know. I just like having her close. I tell her she has a beautiful heart all the time because she tells me that's where I grew.This is our life with my son Ben. He's not this articulate by any means. His sisters, who are very articulate, helped me write this for you. They said he deserves to have the words he may never be able to say himself, and I agree. We don't know how long Ben has with us, but we are thankful for every day. Education and programs must continue so everyone knows that no amount of alcohol is safe during a pregnancy. Programs must be in place to help mothers stay clean during their pregnancies so that another child does not have to live the life Ben does.