By Scott on April 26th, 2020

Scott in shorts, walking along on the sidewalk with his cane.

I want to thank everyone for taking the time to read my first post. I’m amazed at the response. I just want you to know I’m going to try and post something on the blog when I have time.

Today I’m writing about what it means to be deafblind. It’s different for everyone who is deafblind.

People see me walking and finding things they think I can see. I have very little vision. I just know how to use what I have. I’m not going to be a driver or a pilot. I’m going to be learning braille to read and do math. The large print books are not going to let me learn above where I am. I just read the shapes of words. I can’t clearly see words unless the letters are really big, the size of a piece of paper. I’m excited to learn braille for future learning. Please don’t think I’m complaining i just wanted to explain how I see.

I’m deaf. I don’t hear anything. I have cochlear implants. But they didn’t work like they should. My left side made a sound like a gong in my head. I got headaches and couldn’t hear well. I couldn’t tell anyone I didn’t have the communication needed until recently. I have now stopped using the bad CI and just use one. I’m learning to hear with it . I like music and movies but it is really tiring listening it is not natural for me and I have to take breaks from listening. So I just take my CI off . I like being deaf and I like my CI. But I don’t wear my CIs all the time it’s too much work to listen for long periods of time. Especially when I have to concentrate on my vision. I don’t mind going without my glasses or CIs it really feels good not to concentrate all the time on hearing and vision.

I use smell and touch a lot to learn. Yes I use smell to identify people. I know my mom is near just by the smell in the air. I don’t have to see her. People think I smell them because I’m weird, but it helps me get to know them. My mom tells me to ask first but sometimes I forget. I just don’t like not knowing who is there. I thought I’d let you know a bit about me. I know I’m funny to some people. I just think I’m a person who uses different senses than most. So I act a bit different.

Jumping is helpful for me because I possibly can feel my normal happy self. I can feel the ground I can feel my body getting to know how to deal with trying to gather information. I don’t know why, but it helps me focus. My life is so much about gathering information I need jumping to sort it.

This is my experience. Everyone who is deafblind is unique, with different hearing and vision levels, maybe other diagnoses or conditions. I think I just want people to get a better understanding of deafblindness. It’s ok to not understand a person but don’t try and tell them how to act. Instead, try to be open to learn and possibly be an ally or friend. We all could use people in our lives that don’t judge that just are welcoming and open to accepting differences without being ashamed of being around those who may not act like them.

Thanks for reading. It means a lot that you checked my blog again.