Written by James Gideon for his ten-year-old self
James Gideon is currently Program Coordinator: Enhanced Extrajudicial Sanctions Program (Diversion Program), Equine Assisted Life Skills Training, FASD.S.C. that stands for FASD Support Coach, Youth Worker – His insight continues to challenge families and caregivers to help understanding their children living with FASD
Dear Live Abilities
I am a 10 year old living with two parents who I need a huge break from.
They are constantly telling me I need to do this and do that, all I hear is blah blah blah, really that’s what I hear when I get overwhelmed from all the talking.
I don’t like to go to bed early, I enjoy staying up late and playing video games, when they come into my room and tell me ok time to go to bed now, I freak on them, always invading my space. They talk about me invading their space, do they not get it, they are in my space — my room and my bubble. You see, after the sun goes down and the world gets quieter I can began to think better. The lights are lower and the noise is softer. And I can feel safe in my video game, I am already up a new level. In the morning all the crazy busy starts again and — deep breath — well it is just hard hard hard.
I hear my parents telling other people we have to normalize FASD. What the heck are they talking about? Normalize FASD? Yeah right. I know, I know, normalize it is what they hear from coaches who don’t understand what it is like living in this world. I don’t seem to react like everyone else. But, this is normal for me.
Maybe my parents need to get normal, maybe all of society needs to get normal.
WHAT IS NORMAL?
I go to school and come home and my parents ask me 50 million questions and my head spins. I try to remember the first question they ask me and soon all the words get all mixed up and so do the questions. My mind just needs a rest when I get home and I need something good to eat and maybe some down time or shooting some baskets.
They flip out on me when I don’t do good in school. I hear them swear underneath their breath and then they tell me not to swear.
I think I really need a break from them. After all they gave me this idea about respite. They said they need a break. That’s a good idea. I like that idea! I want respite and I can send my parents off some place so I can get a rest from them. They make my head sore. They talk about me and think I don’t hear them. They repeat things all the time.
I hear you. I hear you. I hear you. I just can answer yet, the words are there and then the other word stomps on them and I just need some time to answer.
When I ask for something, they stare at me like I am stupid. I wonder what is wrong with them. I don’t think they know what they want. They tell me I don’t know what I want. They say I am always melting down. Guess what they seem to be always melting down or they run to the computer and go away in their minds and talk about all kinds of things.
Worse yet, when they get off the computer and are together they scream at each other. They ask each other how come we adopted him? They say well just look his mother is this way and she has done this and that. Well I have not done this and that. I am only ten years old. I am a kid living in a world where everyone talks really fast and everything sounds really big and everything looks busy. I need my space Live Abilities — do you hear me! I have to ask myself, ARE THEY NORMAL? If they are normal I don’t want to be that.
They say we need to make FASD normal for me, but is that the way it is? I don’t know, I need respite. I think I should just run away and then I don’t need to deal with them. They say hurtful things to me. They blame me for ruining their life and how expensive I always am. They have so many negative things to say about me or at me. They talk to others about how bad I am. Do they know that they are also bad to me.
I need respite for them, send them away so I can get a rest.
Somebody help me!
This is your friend SavAnna. I have FASD too and I am a trail guide and navigator to kids and teens like you.
I am an FASD Survival Teacher.
FASD is a hard challenge and I am sorry you are having trouble with your parents. I am now an adult and a mom so I can feel your pain. Tell me more…
James: SavAnna – they want me to go to camp and meet new people and have fun with friends – don’t they get how hard that is for me? How hard NEW is? How hard CHANGE is?
It is like they are putting me at the edge of a cliff and pushing me off. Do other kids fly? I think my wings are broken.
I cant go, I have video games to play and I know how to play them. I have worked really really hard to do them well. I have friends here I want to play with. I know them and they know me. I know they won’t bully me. I know they won’t say bad things. They are okay that I am different. I have things to do here at home, they can go. NOT ME!
SavAnna: Oh James, I am giving you a big loving hug and pretend I am sitting right next to you like a kind sister. Our safe place is truly home. You have to realize that your parents are called neuro typical. That means their brains work like many more people than yours or mine. It doesn’t mean you are less, you are just different. When your parents are frustrated and the world is uncooperative they can go and discover downtime and get relief. For us when feeling overwhelmend we don’t really want to be fighting the world out there too!! We have to fight in our heads and bodies everyday to just keep up. Home is safer, stabler, and better to decompress at.
I think we should talk the neuro typicals who have many more resources than we do and many more opportunities into designing a retreat place just for them so they can take time to heal and learn how to come back and love up on us. Do you think someone could get them a grant to do that instead of paying people to try to figure out us?
After all, it will be much easier for them to change each other than for us to become them… even before we were born that opportunity was taken from us…
Love and much hugs, your big sister, SavAnna