I woke up thinking about yesterday. I’m still pretty steamed. What is it going to take for society to recognize the effects of fetal alcohol syndrome? Babies die from it so that won’t get anyone’s attention. Why is it okay for a mother to drink while pregnant still? Even after all that is known.
Do we need a law in effect that actually states that it is against the law for a woman to drink while pregnant? Should we legislate for that? Should we line up a bunch of people with FAS and say this is what happens when you drink while pregnant? Well, that won’t work because most of us have invisible disabilities.
Do we have to draw images with umbilical cords with a handle that has the word KEG on the top of it with the mom’s hand on it leading toward the baby?
What gets me more is the lack of knowledge in this society that it even exists. They say the numbers are up around 50 in 1000 kids have it and it is even higher than that because most mothers do not admit that they drank while pregnant. Stats today say that there are more people with FAS being diagnosed than people with autism.
How come I can go to a man in a Barnes and Noble who is supposed to be very knowledgable about books and topics and he look at me like he had never heard the words Fetal Alcohol Syndrome? This was a man at least in his 50’s. Are we really there?
See, to people who have it and to their EBs (external brains) or caregivers, this is something they live each and every day. We eat, sleep, and breathe FAS.
I am not asking for that. All I am asking for is for more awareness. A month just for FAS. Commercials. Billboards. Speakers. Inservices in schools on FAS. The Rainman and Temple Grandin of Autism. FAS needs that. We need advocates. We need legilators paying attention and passing laws on this. We need chapters all over the country. We need centers for FAS adults and children all over this country. We need all the helps we can get.
IEP’s are not built for kids with FAS so they get lost in the system or misdiagnosed to fit somewhere else. So, they are treated as if they are autistic but they are FAS. Yes, there are a lot of similarities, but it is like apples and oranges. Completely different diagnosis. Completely different brain.
When I was first told I had significant brain damage and that I would never graduate high school, it was 40 years ago. I was told that I had such significant retention and comprehension problems I would simply not make it. I was told that that the parts of the brain that controls the eyes were so damaged that I would never be able to drive. My eyes do not converge. My eyes have 0 depth perception. My sensory is off the charts. My ability to process like others is significantly stunted.
Oh, I’m smart, they said. Very high IQ in fact. but I would have no clue how to apply anything I knew.
What do we do with that?
That was 40 years ago. How much further are we than that.
We did link it to alcohol.
A genetics person give me a 100% FAS diagnosis with the words that “alcohol significantly contributed to my disabilities.”
So where does that leave us today?
FAS people do not have the ability a lot of times to advocate for themselves, but that is what we have to do. We have to educate everyone around us including our own doctors because they simply are in the beginning stages of even knowing what FAS is.
I know FAS individuals who tell me that they have to take fliers to their doctors to explain to them what it is.
There is noone more determined to LIVE and to make it in this world than someone with FAS. They literally are the most determined people I know. They will make it no matter what. AND we will make it without the helps, but just how much further along would we be if we did?
Just how much further along would someone with FAS be if they had educators, doctors, huge centers of research and commercials, advertising, awareness months, ribbons, and moneys pouring into this cause. What if everyone knew about it and I would never have another person look at me again as if they had no clue what FAS was.
What if people knew about FAS as much as they know about autism?
What if we actually had a diagnosis in the DSM V?
Oh, we are going to make it on our own.
BUT, we will be so much further along if we have all that in place.
if we had the helps
if we had the ieps with the proper diagnosis on it so Fas kids got the right educational helps.
If they did, they might be able to be who they want to be when they grow up.
They might be able to get there faster.
They might be able to exert that energy they have to put in every day just for daily living and excel in a job and in life.
If people did it with us, not just our external brains or caregivers, but I mean society like they do autism and other DD’s…just imagine how far we could go.
Just imagine how much less of us there might be!
That would be a good problem.
Maybe a mom just might think twice before having a glass of wine while pregnant.
If we can save one baby from becoming FAS…it would be worth it.
Video blog by Ann on why we need to call FAS what it is. http://hopefasd.blogspot.com/p/video-call-it-what-itfas.html