Lately, I have been hearing from FASDers and their caregivers that there is quite a bit on FASD prevention, but there needs to be more services and education for those who are currently LIVING with it.
Is FASD still considered NEW? People have been born with alcohol exposure since there has been alcohol. Why is there NOT more services in place? A site that I belong to for those living with FASD and their caregivers/external brains) has special ed teachers as well. I am blown away that there is not more being done in the schools on FASD.
I have learned in FASD circles that the proper codes, etc. are still not in place for FASD children on IEP’s. Those living with FASD state that they are helping their doctors understand FASD. Those living with it are having to advocate for themselves, pass out literature, and educate.
Yes, I agree with the comments that those who have it are the best experts. We have to deal with our brains every day. I guess, and this is strictly what I’m hearing on other sites, that they are trying to get the right definition, symptoms, etc. for FASD in the new DSM V, that is going to be coming out. Those ‘experts’ are having difficulty trying to figure out what to do and how to understand FASD.
Well, for one thing, spend one day with one of us and you will understand that this is VERY complicated. It would be nice if the EXPERTS (doctors, etc.) would make a panel of FASDers and their caregivers and spend a day just asking US questions. Diving into the minds of those who live, eat, and breathe it every single day.
Why are there no IEP’s in place for FASD? I heard, and again I am not an expert on this and if anyone can give me more insight, that would be great, but I understand that the education is just not out there for current teachers, school districts, etc. to truly understand how to deal with FASD children in the classroom. Some schools, yes. Some schools, no.
Why is FASD not recognized by the average person? I do know, from a personal level, that when you say FASD, people do not understand anything about it. They do not know how much it resembles autism in sensory issues, etc. In fact, many of us could have a dual diagnosis with FASD and autism. I know I could. I fit under both in a lot of ways.
I do know that I do not see commercials on television on FASD. I do know I have seen prevention ads at times about not drinking while pregnant, but there is nothing out there about those who are currently LIVING with it. We don’t have an FASD month. I don’t even know of FASD ribbons, like so many other causes have.
When I wrote a blog, initially for Jeff Noble, an expert on FASD, I was told from many, that the adult voice was missing. That is the reason I started the blog LIVING with FASD. I realized that not only the adult voice was missing, but also the HOPE in FASD.
I have had people call me from other states, since this blog has started, thanking me for this perspective. Letting me know that this perspective is just not out there. I have had many let me know that they are learning more about their own loved ones with FASD through this.
I have heard the main connection people have had with FASD, until recently, was the book, The Broken Cord, that was written decades ago.
I do realize that all those with FASD are NOT the same and I do not ever want to be the expert for all LIVING with FASD. All I can do is give my own thoughts, feelings, and opinions on LIVING with this.
It is sad, that the perspective has not been out there. I belong to a fb group for FASD. I have learned more there than I could from any expert. I am so thankful for the adult FASD individuals I have met. I know we are different, but I have found TWINS…lol. I fit. It makes me so happy to find like- people.
Living in a world with NT’s (neurotypicals) is hard when your brain absolutely, positively, does not operate like anyone else in the room. It is hard to explain what is going on when it is going on. It is hard to express feelings and emotions. I don’t do well on WHY questions because to tell you the truth…I really don’t know why and most of the time, I don’t understand enough to even answer a question…lol.
There is soooo much to living with this, what I call, sensory-unfriendly, brain-confusing disorder that we live in.
One thing that I would love to convey to those who do not understand FASD. We truly want to do what is right. We often times just dont know how. We are not as defiant as some might think. I know it appears that way, at times. But honestly, we just do not understand. I know I think I am doing what I was asked, only to find out I did it completely wrong.
I’m sure it would look like I didnt listen. I know it might have looked defiant. But honestly, my whole entire heart wanted to please and wanted to do what I was asked.
I wish teachers, etc. understood that part. Because if we could do it right…we would.
We need more education on the basics of who we are. And again, like many disabilities, we are not all the same. BUT, we do have general characteristics/symptoms that fit under FASD. A spectrum of the disorder.
This is an example of what I have experienced when it could appear defiant or that I wasn’t listening. “Ann, go downstairs and get peanut butter, sugar, and napkins.”
As I walk downstairs, I am going through my head what I was told. okay…peanut butter…..ummm…
I bring up the peanut butter and put it on the counter. “What else did you say?’
“You didn’t listen to me.”
I’m quiet because I do not even know how to answer that statement.
An example in the classroom is the teacher is talking. She gives instructions to the classroom. I hear the first few words than the rest becomes…blah, blah, blah. I have to look around to see what the other kids are doing so I make sure I’m doing what the teacher said. It looks like I’m cheating. I’m not. I simply want to understand what I’m supposed to do. I still do not understand. I sit. I don’t do the work. I want to do it, but I don’t understand what I’m supposed to do. The teacher tells me again. Many steps in a row. I only remember the first couple. Again, confused.
Didn’t listen? no.
Wanting with my whole heart to do what was asked? YES.
Defeat. only to feel like I failed. I didnt do what I was told. I let people down. Everybody else understood, but me.
This is why understanding FASD is so important. If the education is out there, than teachers will understand that one instruction at a time works. Distractions in the classroom make it harder to focus. Slowing down speech is vital. Making sure the person with FASD understands, is key. If not, don’t make a big deal out of it. Patiently, explain again. One word at a time. Processing is hard. Allowing as much time as needed for the person to understand what they are supposed to do. Once we get it, we will do it and we will give our all. And we like PRAISE when we do it right…lol.
I know for me, I am this adult, immature kid that loves making people happy. My whole being lights up when I know I did something right and that I made others happy.
Well, that’s it for now…