Its Friday - the kids went back to school this week. My youngest child, with severe quadriplegic cerebral palsy was moved from a center based program (where all children at the school are disabled) to a regular education program, where just one room in the elementary school has disabled children.
It was a interesting experience changing from a school where many of the children are medically fragile. It is very quite to enter. Its nice, but like walking into a very nice nursing home. You still sometime get a nose full. It happens - its part of life for any severely disabled child or adult.
It was a interesting experience changing from a school where many of the children are medically fragile. It is very quite to enter. Its nice, but like walking into a very nice nursing home. You still sometime get a nose full. It happens - its part of life for any severely disabled child or adult.
This week I walked into a regular school, no nurse walking from room to room. Regular children, excited and running in the hallways. We worked hard for 9 years to get to some type of educational program that felt a little more "normal" and a little less "hospital" feeling.
But, now we are faced with a different problem. Imagine - you have a mosquito bite on your arm. It itches terribly, but you can not control a single muscle in your body.
What does this mean? This means: Can not control your voice -- so you can not speak a need to simply scratch. Any attempt just makes you APPEAR to scream without clear meaning or any intelligence. Can not walk -- so the idea of walking to a wall and rubbing the itchy location on a wall is out of the question. Can not move a finger or an arm - so they just fly wildly around as if they have their own agenda. What would your day be like? Do you feel human? Do others seem to treat you like a human?
How do you get others to understand your truly in there and understand to a conversational degree. I'm not saying my child is a complete brain. But, he knows discomfort - he knows FOOD - and knows how to yell for it. He knows how to be patient. He get's his point across fairly well - no need for true speech. However, as his mother, I still wish and pray for it every day.
Imagine - What it's like if every time you entered a room, no one spoke to you? What if everyone just looked at you and wondered if you could speak? What if people always questioned your intelligence? What if people never spoke to you - but always spoke about you - even when you where present?
What is it like to have someone tell people what you liked & what you didn't like - and what if they were not accurate? You came home and had to eat your least liked meals everyday - because someone else says it's your favorite.
What if everyone thinks your always cold - so they bring you blankets. Actually, you always feel hot and hate the blankets.
So how was you day today? No matter how stressful your day was at work, you still have choices YOU make, and decisions YOU make.
May these words help you if you did have a bad day today. Because even with all these things that happen to us on a regular basis - we are still thankful for what we do have every day. Its not much, but life could be worse.
What does this mean? This means: Can not control your voice -- so you can not speak a need to simply scratch. Any attempt just makes you APPEAR to scream without clear meaning or any intelligence. Can not walk -- so the idea of walking to a wall and rubbing the itchy location on a wall is out of the question. Can not move a finger or an arm - so they just fly wildly around as if they have their own agenda. What would your day be like? Do you feel human? Do others seem to treat you like a human?
How do you get others to understand your truly in there and understand to a conversational degree. I'm not saying my child is a complete brain. But, he knows discomfort - he knows FOOD - and knows how to yell for it. He knows how to be patient. He get's his point across fairly well - no need for true speech. However, as his mother, I still wish and pray for it every day.
Imagine - What it's like if every time you entered a room, no one spoke to you? What if everyone just looked at you and wondered if you could speak? What if people always questioned your intelligence? What if people never spoke to you - but always spoke about you - even when you where present?
What is it like to have someone tell people what you liked & what you didn't like - and what if they were not accurate? You came home and had to eat your least liked meals everyday - because someone else says it's your favorite.
What if everyone thinks your always cold - so they bring you blankets. Actually, you always feel hot and hate the blankets.
So how was you day today? No matter how stressful your day was at work, you still have choices YOU make, and decisions YOU make.
May these words help you if you did have a bad day today. Because even with all these things that happen to us on a regular basis - we are still thankful for what we do have every day. Its not much, but life could be worse.
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