Our Blinded World

Posted: February 5, 2013 in 2013, Our Blinded World, Raising Hearts

I needed to write this out. I need to speak it out of my heart. I feel bursting inside with the helplessness of FASD. The utter misunderstanding of the world towards something that could have been prevented, but alas is so often not and many suffer unknown.
You can’t see it often. It is the invisible disability, but it manifests in so many ways that the person who does understand can see. It makes for so much frustration just to know that this is something that can cripple a person in so many areas, but others will look on and look past it, as though it can’t be real.
It does take a lot of energy to find out what these persons are suffering with because in order to see to the core, you have to live with them.
You have to see daily how many times that they need reminders to do things that are important in their day, and yet the next day it starts all over again.
You might think this can be resolved with a reminder book. Imagine that you can’t remember to do a reminder book. Imagine that you can’t remember to remember to do a reminder book.
Imagine that you can’t organize the minutes of your day because time doesn’t have meaning for you.
Imagine you can’t prioritize your life because you can’t sequence things in your mind. You just live daily as if each minute were a fresh one and what was important a few minutes ago, you forgot.
This might sound a bit like an Alzheimer patient. It is, but this person isn’t at the end of their lives. They are just trying to begin it. They won’t get to the end if someone doesn’t help them get there.
They need an exterior brain to keep their lives on track all the time.
They not only forget, and can’t organize, but they make poor decisions often that are not thought through. They often make these poor decisions impulsively and without thinking because they can’t think through and they forget what might have happened the last time they chose that wrong route. Why? They forget. They don’t have good working memory.
As a result of poor decision making, they often get themselves in trouble or danger. They sometimes need protection just like a toddler, or a young child. But they are an adult and being an adult, they are expected to not need anyone to hold their hand. They are expected to grow up, learn, expand.
Would that they could do that as well as others, but often they can’t and no one notices until they might be in trouble and then the words fly. “Didn’t you think?????” No they didn’t. They couldn’t. They can’t.
But others don’t realize that, so judgement follows.
These people are often frustrated. Imagine if your brain tried to synapse from one point to the other and the route was blocked by holes that looked like swiss cheese. Your connection would take longer. Your processing slowed down. They have slow processing often. Others will expect for them to get it and think that they did, but not realize that they didn’t. These people have learned how to cover that up. You might not notice but later they can’t produce what you taught them. It never registered. Or they thought you meant something else and didn’t dare say different.
So if you test them on what you tried to teach them, they don’t have that information. It never went in, or it was lost because of memory not functioning. Either way, it isn’t there. They will fail the tests.
You will wonder why? Didn’t they study? No they can’t study. They can’t concentrate well enough and don’t have the patience for studying. That stresses out their brain too much.
These people might have certain parts of the brain that are fully intact. Why? Well that week of development might have experienced less drinking during utero. So that particular cognitive function might work great. Does that make sense? To me it does, as I have witnessed it, but to others who see the perfect working parts, that is all they see and they can’t imagine that anything can be wrong if this person looks so good in this area. Unless they live with them. Unless they see daily that the individual with FASD looses things, can’t keep life organized, can’t remember, can’t absorb, can’t pass the test, Can’t get it often and just gets frustrated.
NOT to mention how much this brain damage has also harmed them emotionally and chemically. They battle depression, mania, adhd, the ability to speak the truth, have a conscience, etc.
All this cripples their lives even more. They need a lot more support to keep it together. Stress can send them reeling. Take out impulse control and ability to process fast enough and add in depression, anger and anxiety and WOW you have a time bomb sometimes. This person is expected to learn to control their emotions though. They need to grow up. They can use some tools to manage their anger, right?
Of course, they look so together. They can.
But did we forget that they have BRAIN DAMMAGE? You and I can learn from consequences. We remember what happened the last time. They don’t. They don’t manage time, organize their thoughts and life. They often act on impulse, as that control was taken from them.
Do you realize how many people that have this, are in jail? They are the unlucky ones. They either didn’t have someone who understood them and helped them in life OR they made that one big impulsive mistake without thinking and got caught. They didn’t have a conscience that said this is wrong.
Now they are confused more. Living in a hostile environment and trying to cope. Angry and frustrated, life digs deeper pits.
Why do I write this? Because I UNDERSTAND. I see what has happened to two of my children. I see their struggles. I know that they are trying the best they can. I know that others see them and say, nothing is wrong. Why is this mother being over protective?
I know that often others don’t get it. And they don’t have brain damage. They just can’t see it. They don’t live with it. You gotta live with it to see this.
So if you don’t. Maybe you can take my word for it. It is real. FASD steals a lot from someone. Trust me on this one. These adults need an exterior brain for success in life. They will always need a little bit of help. You can’t emancipate them from that help and expect them to make it. They won’t. You are setting them up for failure, danger, depression, hopelessness, frustration and despair.  
 I will never limit God. I will never limit my child. I will help them reach their highest potential. The key word here is HELP. Without an exterior brain, the person with FASD cannot reach their highest potential.  The invisible disability will bar the road.
 Open your eyes world and look past what looks all together. If you know your person has FASD, don’t look just at the cover. Read the book. Find out what lies within and then help them in the way that is best. Don’t expect them to manage alone. They don’t need pity or coddling. They need a “seeing eye exterior brain.”
Terry Quinn


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