I hope you all are having a wonderful Easter weekend. I'm working
this weekend because this upcoming week I'm going to be somewhat busy so I
don't know how many blog additions I will get done this week. In today's entry,
I'm going to talk about how our vacations have had to change somewhat over the
years as I got older.
As you might think, when I was younger and smaller it was easier
to go on vacation than when I got older.
This is because we could just fold up my manual wheelchair and put it in the back of the vehicle and go. Also, if someone held me up under
my arms I could walk a little. That means that if I wanted to get on an
amusement ride or something on vacation, someone would just lift me on
it. It's the same way with swimming. Someone could just get in with me
and we would swim.
When I got older and heavier and I got my power chair, vacations
became a little harder. We had to take our vehicle with the lift on it
and it became harder to get me out of my chair. So whatever we did, I had
to stay in my chair. I could not go swimming anymore unless the pool had the
lift to help me get in and out of the water.
You would think that with the ADA (the Americans with
Disabilities Act) that became law in the 80's, I could go anywhere I wanted on vacation
and not have to worry about anything but unfortunately that is not true.
I will explain what I mean in my next entry.
Maybe the next time you go on vacation you will know some helpful things
to do before you go.
Happy Easter, everyone!
Hello everyone.
In this entry I'm going to write about how I started to learn so much about a
computer.
One day when I was
about 11 years old, my uncle Tom came over and he told my grandma “Brian should
start working with a personal computer.
If he learns how to use one, it will open up a lot of opportunities for
him to be able to write, communicate and even play games to help him
learn. If he learns how to use a computer,
it will help him do many things and have more opportunities later.”
My uncle Tom knows
computers inside and out. He can build
them from the ground up. The first computer that be built for me was just basically for games so I could get use to the basic
operation of a computer and get used to working with a trackball since I could
not use a mouse due to a very limited range of motion.
The more I got used to things, he would show me
more and more. Today, I can operate a computer with the best of them. I
have been able to get special equipment and software over the years to help me
operate a computer as quickly as possible, because it takes me a much longer
time to type. I’ll write more about this
in later entries.
When you are handicapped, your main support is
your family. Many people assume you
don't know anything because you are in a wheelchair.
In my next entry see how our family vacations
have had to change somewhat as I got older over the years.
Have a great day everyone.
Hello everyone. Today, I'm going to talk about how hard it was to get me sitting right in my new chair.
I can not just sit in a chair and be ready to go, I have to have pads for support to help me sit up straight. Another problem people with Cerebral Palsy have is that their body shifts in a chair as the day goes on. It does not stay in one spot. That is what happened with me.
Steve from ATG Rehab would come over to the house and make some adjustments to my seating. He would get me looking pretty good and then about two hours after he left I would be falling over again. We could not figure out why.
One day Steve actually came over and stayed about five hours. He would make an adjustment to my chair and then he would watch my body and see how it moved over time. He even took pictures and sent them to doctor Kitts and they talked on the phone many times. She would tell him what to try next.
After about 6 months between everyone, they got me sitting the best I ever did. Sometimes it takes people working together to get everything just right. It also takes time. You can't just say “here it is” and be done with it.
In my next entry see how I got started working with computers. Have a great day everyone.
Hello everyone. I hope you all are having a wonderful day. I'm going to talk about the first time I got a new wheelchair after my first appointment with doctor Kitts. Let's get started.
Anyone out there that has Medicare and Medicaid knows that it is difficult to get them to pay for certain things. What made my situation worse was that my five-year time period was not up on the chair I had. Doctor Kitts said the chair I had was too small for me, but we all knew we would have a hard time getting it.
Doctor Kitts always said that when you have Cerebral Palsy you have to sit right in your chair, so we had another battle on our hands.
ATG Rehab sent the paperwork in for the new chair to Medicare and Medicaid. They told us it would be about 6 weeks before we would hear something. That came and went and nobody heard anything. Each time Grandma would call ATG Rehab they said they had not heard anything either.
Finally, after about a year my new chair was approved and then it took another 6 weeks to get the chair. After I got the chair I had to have all kinds of pads to hold me up right.
In my next entry find out how we did this. Have a great day everyone.
Hello everyone. I hope you all are having a wonderful day today. In today's entry I have a story about when I was going to Roth Middle School. We had another fight on our hands as we tried to get an aide in the classroom to see things our way yet again. Let's get started.
Let me start by saying that everyone that went to Roth was required to wear a uniform which consisted of a white shirt and navy blue pants. With my type of cerebral palsy I can not feed myself, so an aide had to feed me. One year that was a problem. One day we all went to lunch and I told the aide he had to feed me. He told me “you either eat it or wear it!”
After he saw I could not do it he started to feed me, but he gave me such big bites that it was falling out of my mouth and it got on my shirt and all over my face. That day we had spaghetti and meatballs and here I am with a white shirt on that was a total mess that I had to wear the rest of the day. How do you think I felt?
When I got home that day my grandma saw how I looked and I told her what happened. She was not happy at all. That very same day she called the school and setup a meeting with me, grandma, my teacher and the aide. In the beginning the aide could not understand why we were having the meeting, but when we started talking he knew what it was about. My grandma said “how would you feel if your kid came home with food all over them?” He said, “not very good.” After that, we did not have any more issues with him.
A lot of people think when you have cerebral palsy that you don't want to look your best. That is not true. That is why you have to speak up. Have a nice day everyone.
Hello everyone. I hope you all are having a wonderful day
today. I'm going to talk about the first
time I took the proficiency test after my IEP
(Individualized Education Program).
As I said in my last entry, when we had my
meeting that day everyone thought we were crazy for wanting me to take that
test except Bill Foreman. The bad thing was usually when you took that test,
they put everyone in the library. With me having cerebral palsy, I could
not write so I had to have someone write for me. That meant I had to talk
to that person. The first day we started out in the library but after about 10
minutes we went back to the classroom because my aide could not hear me.
Since I have cerebral palsy I could have as
long as I needed to take each part of the test.
When you have cerebral palsy you think much better when you are in a
room alone. So when we went back to the classroom, they decided to put
all the kids in one room and me and the aide in the other taking the
test.
There were five parts to the test that included
reading, writing, math, science and english. Everyday for a week I took a
different part and one of the teachers was not very happy because she could not
do what she wanted on the days I was in her classroom taking the test because
of how long it took me to take the test.
But, she could not say anything.
The first time I took the test, I passed three of
the five parts. When you have cerebral palsy do not let anyone tell you
that you can not do something. I did
pass all five parts.
Have a great day everyone.
Hello everyone. Today, I'm going to tell you a little more about Meadowdale Elementary and the other schools I went to. I also plan to tell you about one teacher that went to almost every school I went to. Let's get started.
Let me start by saying when you have Cerebral Palsy you really have to fight for everyone you want involved with your life, and if you are lucky you will find some people along the way that will help you on the right way to go. It seems like a lot of people think that when you have Cerebral Palsy you’re not very smart. There are different degrees of Cerebral Palsy. A lot of people that have Cerebral Palsy are just as smart if not smarter than others. I had one teacher that knew I was smart. His name was Bill Foreman.
I had Bill Foreman at Gorman, Roth Middle School and Meadowdale High School. When you are handicapped and you go to school, every student has what they call an IEP (Individualized Education Program) where the school meets with you and your parents and reviews the goals they have set for you. I have news for everyone. If you are not happy with one of the goals they have for you, you have every right to fight that or even have ask them to change it.
There is a proficiency test that everyone has to take before you can graduate high school. If you are handicapped, you don't have to take it. One time at my IEP meeting my grandma thought I was smart enough to take it so she wanted me to try to take it. Everyone thought we were crazy except Mr. Foreman and he kept winking at my grandma.
In my next entry see what happens next, have a great day.
