I know who’s in a room with me. I hear them. I smell them. I see them. I know. If I’m not sure who is in a room with me, I get a little still and concentrate on them for a while, until I know who it is.
I learn instructions pretty quickly, too.
But, sometimes, my body stops me from doing what I want to do.
Although Cerebral Palsy is a permanent condition, as a person learns and grows and practices skills, more control over movement may be achieved.
I’m so lucky! I was diagnosed very, very early. I have had a lot of therapy already, which is all very helpful! Mostly, I am happy to do my exercises, but… sometimes I don’t like them. It's like going to the gym and really pushing yourself.... every day. Some people say I don't move. That's not true! I move all day. I move so much I need a high calorie diet. It's just that my movements are not like most kids my age. I'm not running around, riding bikes and jumping off trees.
Vision impairment is not uncommon in people with cerebral palsy.
1 in 10 children with cerebral palsy are blind.
Mum and Dad were told not to say I “can’t see”. I will believe what they say and that might confuse me. Some days, I can see! (Even if it’s only for a short while) Instead, we talk about whether I’m having a good or a bad seeing day. I like my good seeing days. It means I can see my family. I've been using an eyegaze system for a while. I use my eyes to make an iPad work. I can play games and later, I will be able to have conversations using my eyes and the iPad. I am learning to use my eyes to communicate, via technology. I am also working on focusing on people's faces when they talk to me.
I need people to believe in me.
I know who believes in me. I know who thinks I am clever and cheeky and determined. For those people, I will work with such determination. I will strive to make them proud of me.
I will try so hard to show them how clever and strong I am.
I also know who does not believe in me. I know the people who only see my disability. Those people doubt me, and don't have any expectations for me. For those people, I won't bother showing them what I can do.
By five years old, I have learned that I don't have to prove myself to people who dismiss me.
I am grateful for the people who bother to say hello to me. I love the people who say hello as naturally as they say this to other kids. I love when people touch my hair or arm, as they say hello. They are including me. They don't 'forget' me, just because I am not running up and calling out to them.
It hurts when I am ignored.
Mum and Dad tell me about the procedures I have, the tests and therapies I need. They try not to talk about me while I am in the room. They know I like to eavesdrop.
Cerebral palsy stops my muscles from working in the way I would like them to. Cerebral palsy does not stop me from understanding stuff.
#raisingawarenes #cerebralpalsy
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Dexter's Vision
Dexter's Cerebral Palsy
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Who is Dexter?
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