I’ve always been quiet. My brain is not! If I could say what I think, I would never shut up…lol. I find myself in situations where everyone is talking and I seriously cannot connect my brain with my mouth so I appear quiet or shy and that is really not the case. Well, I might have a little bit of those, but really I’m like that because I know that my brain is not cooperating. It can be embarrassing to have a room full of people waiting for me to put my sentence together. For some reason, putting my hand on my head helps. I really have no idea why. Have always been that way. If I put my hand on my head and breathe in deep, I can gather myself together enough to form sentences.
Putting my hand on my head calms me. My insides are anxious and just that feeling of a hand on the head is an instant calm, even if it is my own.
I think one of my biggest frustrations is communication. I could walk around with a pencil and paper and communicate all day, but that is not how the world does it. We are expected to do what the rest of the world does. What if we all walked around with different forms of communication. Not just speech. A lot of my frustrations are simply because I am not able to communicate what I want or need to.
The people who I like to be around are those who help me to communicate. They are patient. They don’t force me to tell them what I need to in their allotted time. They don’t let me feel small because I am having a rough time getting the words out.
Finding ways for someone with FASD to communicate can really alleviate a lot of frustration. I know I can act out, get agitated, get angry just because things build up and I am not able to communicate the way others do. We really are forced to be in a world where walking around with a pencil and a paper to communicate would just be looked at as weird.
I wish society was more accepting of disabilities. The numbers are growing that having a disability is almost the norm. There are so many people with autism and FASD that you would think that there would be different options of communication that are acceptable by now…lol. I know thats a stretch, but let an FASDer dream. I would love to just whip out my pad and pencil while in a mall talking with friends and just write so I can say exactly what I mean instead of sit there for a minute trying to get my brain to connect with my mouth to get the words out. and even still, not even say exactly what I mean, but bits and pieces of what I wanted to say. It’s okay. But it really can make a day in the life of someone with FASD, very hard.
It is crucial that the FASDer have people in their immediate circle who can help them to communicate. Let them find their way to communication. Help bridge that gap.
Encourage drawing, singing, writing song lyrics, photography, and writing. Let them build with legos or find other creative ways to express who they are and how they see the world.
I know for a fact that our silence brings about a deeper thinker. We are very deep thinkers and we connect with life in a way that others do not. That adds to the frustration, I think. I see so much. I see pain deeper. I see heartache in a way that I feel it. I want to convey people’s pain and the way I see things so I start shooting my camera or writing because I feel this stuff and I can’t find another way to get it out, but to do it creatively. It really helps eliminate some frustration.
We get stuck. We don’t want to be stuck in our frustration where it gets to the point that we act out regretting later what we did. My thing is punching walls or myself.
I hate with all of me to be stuck. I want to always be moving forward and I am constantly trying to find a way to do that. How can I learn. How can I move forward. This didnt work. This didnt. work. I will work until I find a way to make it work. How can I do it?
How can I communicate? Help us find ways to do this. Sit down next to us. Quietly. Meet us where we are. Let us calm and find a way to tell you what we are feeling. Let us tell you how we see the world. Hand us a pencil and say write it down and tell me. Draw it. Write me a song or a poem that conveys what you want to say. Is there a character on tv that you can relate with that you can share to tell me how you feel? There has to be a way and that way has to be okay for everybody in the room.
Sometimes it is nice when people (society) comes to the world of those who have disabilities and they are forced to communicate the way we understand instead of us having to always work outside of our brain abilities just so its socially acceptable.
Helping us find ways to communicate equals a calmer house. Equals a calmer FASDer or someone with autism. It means frustration will melt before a meltdown or a blowup. When you see a meltdown coming or a blowup, hand them a pencil and paper and ask them to tell you exactly what they are feeling. Write. Do whatever you need to tell me how you feel. Do it please because I really want to know.