“Here mom, let me help.” Those were the words I heard from my 16-year-old today. I’m thankful for those who know when to help. Who know how to help and who know exactly how to allow me to be this FASD person but still feel okay at the same time!!!!! To be in a store, surrounded by items, with a list shuts down my brain. The harder I try, the more confused I get. Looking at items trying to match them up to the list for 15 minutes didnt help. “Here mom, let me help.” Calm. Patient. Loving. And most importantly, she did it in a way that I did not feel insignificant. She just stepped in and helped and didnt for a second make me feel that there was something wrong with me.
Archive for the ‘external brain’ Category
We are the ones who will lie with a dying animal until it dies. We can’t give like everyone else lots of times, but we give all with our heart.
It’s easy to think we want to be a part of the wallpaper and disappear. In some ways we do, especially when we hurt deeply. The best thing you can do for someone with FASD is not let them go through a death alone. There are a lot of confused thoughts and I know I feel completely lost.
My EB took me up to the casket for one last time. I cried. It meant everything to me for her to do that. The fact that I do cry now is awesome. I was thankful and blessed that my EB let me be a part the way she did. In fact, all of her sisters embraced me.
Synapses. Hemispheres. I’m not even sure what all that means. I know it has to do with the brain. I know that my left hemisphere and my right hemisphere don’t work together like they are supposed to. There is a disconnect.
There’s a lot of misfiring going on in there. I don’t need to tell you how much of an FASD brain is affected. I know it’s a spectrum, but we do have many similarities.
One of the biggest things we don’t like is change. We do not adapt well and we need lots of time to process when a change is coming.
When I was 11, my dad, my world, my everything died and…as I referred to in (a previous post)…I had no idea who I was anymore.
It was November 25. It was like any other day. My dad leaned over my bed and kissed me goodbye before he went to work. I got up and went to school. I came home, ate, and went to swim practice.
I did it every day for years.
It was my routine.
That particular day, my neighbor came to pick me up from practice.
“Where’s my mom?”
“She’s at the hospital with your dad,” my neighbor said. “They are just running tests. Nothing major.”
She drove right past my house and went to hers.
I can still remember what was on the television. Happy Days.
Laverne and Shirley was starting and the phone rang.
My neighbor’s daughter hung the phone up and told me she could take me home now.
When we pulled in there was a lot of people. My neighbor did not even say anything at all to prepare me. All she said was ‘Bye.’
I went in. Looked around. I saw all of my neighbors. I saw my two aunts (my dad’s sisters.)
Now, I have FASD. I have a hard time processing to begin with, but this was a situation that I had no idea what to make of it and noone (even without FASD) wouldn’t have been able to.
They say that FASD people are at least half their age. So, at 11, I would say I was around 5-6 emotionally. Not sure. Sometimes I feel that now.
I looked on the couch and I saw my adoptive mom sitting there crying. I don’t know why, but the first thing I remember saying was, “Is it dad?”
She burst in tears and shook her head.
“Is he sick?”
“Could he die?”
I don’t remember anything, but a room full of people looking at me and they said I threw a book.
Death? I really did not even understand death. I just knew that meant I would never see my dad again.
I spent the rest of that night in my room by myself.
The next morning I actually got up. It was the day before Thanksgiving break.
I got ready for school and came down and said, “I’m ready to go to school.”
My adoptive mom and aunts laughed. “You aren’t going to school. Your dad just died.”
I went back to my room.
I ventured down and spent the rest of the next three days playing the same song over and over.
Have no idea why, other than the fact that it calmed me. Repetition. I must have played that song a thousand times. I can’t believe someone didn’t tell me to stop.
All through the next few days, with people coming over and funeral planning, etc. Not one person took the time to sit down with me to make sure I understood what was going on.
People with FASD can often feel invisible. We can be in a crowded room and feel like we are the only ones not included.
All it would have taken was someone to sit next to me, someone in the family and just sit with me. Not let me sit alone.
All it would have taken was someone to ask, “How are you?”
FASD brains are confused brains. There is so much that goes on around us and it is so hard for us to process all of it. If life could operate at our speed, it would be so much easier.
We understand better when people slow down their speech.
We understand better when people make sure we understand what they are saying before they move on to the next point.
We understand better when things are broken down into smaller increments. One sentence at a time, sometimes.
We want to understand.
It’s like being in a tornado and asking what did you see and hear when you were in there.
I remember sitting in the room with all the plans of my father’s funeral, etc. going on and seriously hearing a bunch of chaos, not making sense to any of it and not one person taking any time at all to prepare me before I went into the funeral home for the first time.
Noone told me I would see my dad in that state and what to expect.
He died instantly.
Massive heart attack.
He was only 55.
He was my life.
I said in a previous post that I started drinking when I was 11.
Well, that is not altogether true.
Yea, drinking alone, it’s true.
My dad would always come home and from the age of three I remember sitting next to him with my little shot glass and his beer. It was our time. No…lol…I don’t condone him giving me beer in a shot glass at age three. Not at all. I just know that it was some of the best times of my childhood. Sitting quietly next to my dad, on the couch every night drinking our beer, was our thing.
I know he didn’t think that he was hurting me and I know he didnt realize then as much as he did later just how much of my brain was already damaged from alcohol in utero.
He loved me. He was the best dad. He was the only one who got me. Who met me where I was and just would sit quiet with me. During those times, it was as if the world slowed down to my speed.
We need help having the world explained to us.
Just last night…lol…my external brain (my choice of wording) and my 16-year-old daughter were watching NCIS. They were really into it. They were making all kinds of comments, etc. I was so lost. I had no idea. I try not to stop the show too frequently, but in order for me to understand the show completely, I have to stop and ask what just happened, what does that mean.
If we could slow life down to slow mo…we would be fine. We just don’t process that fast.
We need constant interpreters.
The important thing is, if you can be an interpreter for someone with FASD, be one.
Don’t let too much go on before life is explained.
Make sure the one with FASD is caught up to the rest of the room.
I thank God every day for my life interpreter’s.
Who are we? What are we? Let’s break it down letter by letter.
FETAL ALCOHOL SYNDROME DISORDER stands for…
Feels deeply, forthright, fabulous, fun-loving
Excited about life
Courageous, creative, curious
Hopeful, happy, hilarious, honorable
I had it in my head that I was going to go to the flea market to sell my photography. Last week. I had just about everything ready to go…except for me. I got hundreds of photos ready, framed and matted 30 of my best prints. My external brain helped me to think about everything I might need. We got order forms for special orders, a calculator, grocery bags so I can bag items I sell, extra money for change.
I always need help. This time, I wanted it to be different.
We watch everybody in the room understand what’s going on when we are confused.
Side note: Added after I wrote this: An FASDer (RJ from Flying with broken wings) just said this to me about this blog…We have to remember that giving in is not giving up. That is AWESOME! Love it! True!
My blog that was posted on Jeff Noble’s FASDforever. Thought I would repost on my blog. It was originally posted and can still be found on FASDforever website. With FASD, it is hard to hear what others say, a lot of times…hence the title All I hear is blah, blah, blah. Well, I’ll let you read it…
There are experts and there are experts. I don’t have a degree in genetics. I don’t have a PhD in anything. In fact, I don’t understand a lot of what goes on around me without an interpreter. What makes me an expert? My mom drank when she was pregnant with me. I might not understand the brain, but I am still an expert. I have lived with this FASD brain for over 40 years.
I look like the average adult. I have blonde hair and blue eyes. No one would notice anything different about me just by looking at me.Most of what is wrong with me, people can’t see.
Unseen things are hard to understand. I know that one first hand.
When I was first adopted as a baby, I was diagnosed as failure to thrive. My toddler years were spent in constant struggle and by the time I hit kindergarten, there was something noticeably wrong. My teacher contacted my adoptive parents and told them I needed tested. FASD was not a diagnosis, back then, but the neurologist had bad news. He informed them I had significant brain damage and I would not even graduate high school.
Struggling was all I knew. If i was going to do what the other kids were doing, I simply had to find a creative way to make it happen. Struggling was more than everyday life.It was every moment life. I couldn’t see words like other kids. My eyes did not converge and i had no depth perception. So, I saw two of everything and the world was flat. Yes, Christopher Columbus, the world is flat…to some.
I couldn’t cut like other kids. Scissors and buttons have never been my friends. I knew if I was going to make it in this world two things had to happen.
Number one, I became the most determined kid in the school. I might have gotten C’s, but they were C’s I earned. I learned how to learn. I adjusted. My life has been a continuous Thomas Edison quote. When he was inventing the lightbulb, he said, “I have not failed. I have found 10,000 ways that won’t work.” Well, we all know what lights the room at night.
I know what it feels like when everyone in the room knows you are struggling.They told me I would not graduate high school. I got a masters degree. They told me I would never hit a ball. I practiced hours until I was hitting home runs.
I know there is a lot I am not able to do. Sometimes, that’s hard for me to accept. Sometimes, I blow up in frustration, but I blow up because I care. I blow up because I want to do things on my own as much as my loved ones want me to. I want to understand the world around me as much as everyone else does. I really don’t want to have to look to others to interpret. I want so badly to understand what everybody else understands, BUT, I have to accept that I have to incorporate helps in order for me to be my best.
The second thing is that I can LIVE with FASD. I might not be able to ever figure out my bank account, but I have an external brain that knows how. I might not be able to hear everything that is said, but if one of my interpreters is not there, I can always turn on my tape recorder and play it back later to get all that was said. I might have to rewind a few times to catch all the words because of auditory processing disorder, but I learned a way to beat my own brain.
I found my passions. Sure, there are so many things that people with FASD cannot do, but there is plenty they CAN do. I found I am not the best verbal communicator, but I can write. I love photography. I became a professional writer and photographer. I was a journalist/columnist for almost a decade, wrote a nonfiction book, just finished my first novel and have online photo galleries.
Hopes and dreams don’t have to be gone when a person is diagnosed with FASD, they just have to be different.