What follows is a presentation the maiden made to a FASD Caregiver Group last week. Her first official speaking presentation about growing up with FASD. In her own words.
School was horrible, from grade 2 and on all the way up to high school.
First, I started by acting out in elementary school, because I was overwhelmed, and teachers and other kids thought I was misbehaving. When really I was just not catching up with the others my age, my mind was growing at a very slow pace.
I was bullied for being different
But then, in older grades, like 6 and 7, I was bullied a lot for being different, because the other students didn’t understand me, and thought it was cool and ok to do what they did. They would get me all upset, then run at the last minute when a teacher would be called over, so then I would be the one in trouble because the teachers would see me all upset but the person who caused me to do this would be long gone, which made me even more upset because it then started getting worse as time went on instead of getting better.
Keeping friends was hard
The thing is, I WAS able to make friends, that wasn’t the problem, the problem would be keeping those friends, because once the friends saw what happens when I get upset. They didn’t understand what was going on, but they would want to help but can’t so then they would end up not hanging out with me anymore because of this.
But now, that I am getting older, people are more understanding that what I am still doing is not what girls my age would do. They are trying to get me the help I need. Because they now know that it’s not me just doing things on purpose, I am doing these things because I don’t know what else to do to change it and get better.
What would help is someone there with me while I do something
One example for something that I do that I don’t mean to happen is like when I am told to do a chore, example, dishes, I start off thinking ok, I need to help out around the house. So I start off positive and ready to go. But then when I start doing it, my mind stops and I get frustrated and stop doing what I was doing and get really upset, and I don’t know why. I just can’t stay focused, but I start off wanting to do that thing but end up all upset.
What would help me when I get like this would be is if someone would be there watching over me while I do what I am to do, for when I start getting worked up. Then they would be right there and see in my face that I am starting to get a little upset. So they would ask me to stop what I am doing and try and see why I am like that, and try and help me calm down so I can refocus myself on the task I am to do. That is what helps me when I need to calm down.
Visuals and to-do lists, broken into small steps, help
Other things that help me out are things like, visual help. Like someone drawing or sketching out what I am do to, in little steps so I can see what it is they are asking me to do. Because sometimes I can’t understand or when someone talks about what they want me to do I don’t take in all the info that I need to be able to do that task, and then most time I will end up asking questions while I am doing the task, which then both me and the person who explained the task to me get frustrated and don’t know what to do. So if I have visuals it’s easier for me in most times.
I also like to do list, because then I have everything written in a list that I am to do. So it’s kind of like little steps, which I really like doing, because when someone breaks something down into steps for me. I find it easier to do that task rather than someone verbally saying it, or even if they did do steps, but just didn’t break down the steps into smaller steps, because bigger steps are to confusing for me to do because it has not been explain enough to me. I especially don’t like when someone is helping me out and they start yelling, because there getting frustrated. It makes my mind shut down, because I don’t like loud voices especially when I am trying to do something and I might be a little worked up already too.
Time is torture. But never give up
The one thing I would have to say to you who care for kids with FASD, is to never give up, keep trying, because if you give up on the first try, then you haven’t really tried for something to need to work you need to try it a few times. Instead of giving up easily, the other thing is to do it slowly you don’t want to rush something that needs time, I know time is torture, but if you do things slowly and in little steps, you won’t get as frustrated and you will definitely understand it better. Also keep trying, everyone needs practice to do things, nothing just happens the right way with one try. That’s why you need to practice to, to become better at something.
We aren’t doing it on purpose.
Another thing that is hard for me, is impulse control, which I would explain. It as, you do it once and it’s fun, and then you get hooked, do it again, you get an adrenaline rush, do it again and again it gets addicting, we aren’t doing it on purpose, it is just something in our brain that’s not working properly and we can’t help it. But for somethings you have to wait to explain and help until you child gets older, and in those cases you could do things to help them till you can talk to them, like keep stuff locked up, that is the one best and safest thing for everyone to do, because it keeps the temptations away and then no one get blamed or hurt or in trouble, I know it helps for my mum and grandma for helping me become better too.
A few things you can do to help me when I am upset and/or overwhelmed is, just leave me be and give me space because at these time I just need to calm down and I would be sad if something happened if I did something to my family just because they wanted to help, I would be mad at myself and usually I would get emotional and cry. Because, we do care it’s just something in our brains that isn’t working like others our age. We never do things on purpose, because we always regret it later that day, when we have calmed down, or if we did these things as a kid we will regret it when we get older and look back and remember the things we did do.
It’s not because we want to get you mad, it’s because we need help
So all I want you parents to know it, we don’t mean for this to happen, we want to fix it, we just don’t know how and sometimes we feel like no one else is listening or cares, so we just keep it inside. But then that is usually why we end up bursting and have a meltdown or get really mad is because we don’t know what to do, but all we know is, we don’t want to make our parents mad and disappointed at us so we do our best to hide that and then that’s why we do thing we regret, is not because we want to get you mad it’s because we need help.