NOAH
I am part of an organisation called NOAH (national Organization of albinism and hypo pigmintation). I am on a web board that people with albinism or parents of children with it or people just wanting know more about it, call talk. There are a few catigories like any web board, and i sift through all of them often.
I've always been willing to answer questions and ensure parents that their kid is going to be just fine. They just need to treat them normally. Many of their children have better eye sight than me (I've concluded I'm one of the poorest sighted people on this board) and I have gottan a lot fine in life.
What bother me is that someone will ask a question. Like, someone my age. Like, a woman posted a few days ago about how she has been trying to get a teaching job for years and feel discriminated against bc of her looks and eye sight. A parent replied saying at the NOAH yearly confereence they met two teacher with albinism and they will be fine. And that their kid is 2 months old with albinism and is fine.
How the HELL is that sopposed to help them!
I posted something the other day about my troubles with soldering. I asked if anyone had any expierience with it. I am ahving a hard time desolding things, and i don't know if it's bc i just stink at it or bc of my vision. I said that i have tried magnifying glasses but it doesn't help.
A mom with a 3 year old wrote back saying at the conference she met someone who uses magnifying glasses. And i could try that.
hence, did you just read what i wrote?
Many times parents write about fears they have for their children. Like, social fears. They realize that their kids can't see faces. I then try, and like the two other people with albinism who talk to them, tell them about how people with low vision need to adapt. And tell them how their child will too.
But the parents don't listen. It's like they want to freak out more to each other than talk to the pople WITH the condition.
When I was younger NOAH was formed when I was 2. I've grown up with this organisation. It was always gears towards people living with the condition and educating parents about it. These days it is only about kids that are 6 and younger. They have bowl-a-thons bc...the heads of NOAH i guess think that's all kids with albinism can do? What about the older generations? What about the people that are in high school and starting life in a new city and having to deal with it? They have forgottan about the PEOPLE WITH albinism and are just alking to parents.
My whole life my main goal has to become a mativational speaker. I want to talk about my condition and educate people about it. i want others to know that's "it's ok" that I have really bad eyes, because I have found ways around it. i want the parents to LISTEN to the stories of people that have grown up with albinism and are leading amazing lives.
NOAH is looking people new people to be on the Board of Directors. You need to be nominated or can nominate yourself to be on it. the application is due August 1. I have to meet two Saturday's out of the year, one in fall, one in spring. I'm unhappy with what is happening to NOAH. I want to begin living my dream.
Do you think i should apply for it?
I've always been willing to answer questions and ensure parents that their kid is going to be just fine. They just need to treat them normally. Many of their children have better eye sight than me (I've concluded I'm one of the poorest sighted people on this board) and I have gottan a lot fine in life.
What bother me is that someone will ask a question. Like, someone my age. Like, a woman posted a few days ago about how she has been trying to get a teaching job for years and feel discriminated against bc of her looks and eye sight. A parent replied saying at the NOAH yearly confereence they met two teacher with albinism and they will be fine. And that their kid is 2 months old with albinism and is fine.
How the HELL is that sopposed to help them!
I posted something the other day about my troubles with soldering. I asked if anyone had any expierience with it. I am ahving a hard time desolding things, and i don't know if it's bc i just stink at it or bc of my vision. I said that i have tried magnifying glasses but it doesn't help.
A mom with a 3 year old wrote back saying at the conference she met someone who uses magnifying glasses. And i could try that.
hence, did you just read what i wrote?
Many times parents write about fears they have for their children. Like, social fears. They realize that their kids can't see faces. I then try, and like the two other people with albinism who talk to them, tell them about how people with low vision need to adapt. And tell them how their child will too.
But the parents don't listen. It's like they want to freak out more to each other than talk to the pople WITH the condition.
When I was younger NOAH was formed when I was 2. I've grown up with this organisation. It was always gears towards people living with the condition and educating parents about it. These days it is only about kids that are 6 and younger. They have bowl-a-thons bc...the heads of NOAH i guess think that's all kids with albinism can do? What about the older generations? What about the people that are in high school and starting life in a new city and having to deal with it? They have forgottan about the PEOPLE WITH albinism and are just alking to parents.
My whole life my main goal has to become a mativational speaker. I want to talk about my condition and educate people about it. i want others to know that's "it's ok" that I have really bad eyes, because I have found ways around it. i want the parents to LISTEN to the stories of people that have grown up with albinism and are leading amazing lives.
NOAH is looking people new people to be on the Board of Directors. You need to be nominated or can nominate yourself to be on it. the application is due August 1. I have to meet two Saturday's out of the year, one in fall, one in spring. I'm unhappy with what is happening to NOAH. I want to begin living my dream.
Do you think i should apply for it?