Living with CP: the early years part 36.

  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.

Living with CP: the early years part 35.

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.  

Living with CP: the early years part 34.

  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.

Living with CP: the early years part 33.

Hello everyone.  Today I'm going to talk about when I left Gorman school for the first time and went to a new school. 

Keep in mind I went to Gorman school for the first seven years of my school life, so when that day finally came when I had to go to a new school how do you think I felt?  Whenever I have a big change in my life I get nervous.  It also takes me some time to adjust to everything. 

The first day at Meadowdale Elementary school I was very nervous. I did not want to go at all  because I did not know any teachers or kids. At my old school I knew how everything worked.  When I  got there that first day no one met me at the bus. When I went in the front door someone asked my name and then they took me to my homeroom. 

This school was different because it was a normal school, but it had handicap classrooms.  In each classrooms there was a teacher and an aide. They only had 2 handicap classes in the entire school.  There were people with all kinds of disabilities and when we went to certain classes like music class, it was not specifically for handicapped students, but for everyone. 

That was hard for me because the music teacher had a loud booming voice and he liked to yell when the kids did not listen.  When I went to that class for the first time I lasted about 5 minutes because of my sensitive hearing and I had to leave because I started to cry.  The teacher could not help it.  That’s just how he was.  Soon, I got used to everything by just taking one day at a time. 

Have a great day everyone.   

Living with CP: the early years part 32.

  Hello everyone.  I hope everyone is having a wonderful day.  Today, I'm going to write about when I started therapy at the former St. Elizabeth's Hospital. 

As I mentioned, when you have Cerebral Palsy you need to keep your muscles lose on a regular basis so your body doesn’t get tight.  Up to this point, I have not had any kind of therapy for about 10 years, so I knew that the first day of therapy would be challenging. 

On that day when we got there, I had an occupational therapy and physical therapy evaluation. Sure enough, when I had the physical therapy evaluation the first thing they did was lay me on the mat to check my range and see how tight I was.  When she started she could hardly move me because I was so tight. The therapist worked for about 45 minutes and near the end of the session I was moving much better.  In the beginning of the session I was sweating and I wanted to cry.  They just kept telling me to breathe.  I was even getting sick in my stomach. 

Every time after that I got better and better.  My grandma and I did this for three years. I don't know if everyone with Cerebral Palsy has this problem or not, but because my muscles are so tight, my left leg pulls in and my left hip is 50% out of the socket.  So I put something between my legs in my chair to keep my legs apart.

In my next entry we are going back to my school days and I will talk about when I finally left Gorman School and went to a new school for the first time.  Have a great day everyone.

Living with CP: the early years part 31.

Hello everyone. I hope you all are having a great day today. Today, I'm going to talk about what happened after my appointment with doctor Ellen Kitts. Let's get started.

As I said in my last entry one of the first things doctor Kitts said at my appointment that day was that she wanted to try to get me a new wheelchair because the one I had at that time was too small. Doctor Kitts has always said that anyone with Cerebral Palsy has to have a chair that fits them correctly.  She also doesn't believe in having operations unless it is absolutely necessary.

She also wanted me to start some occupational therapy, physical therapy and speech therapy. Keep in mind I have not had anything like that in about 10 years. A problem people with Cerebral Palsy have is if they don't keep their muscles loose, body tone gets very tight. So when you do work out again to get everything loose, it will probably really hurt at first.

Grandma felt like is was more important for me to be able to sit up in my chair and work on my computer before I could do anything else. So, with me going to therapy three days a week, we knew I could not do that and go to school, too. That would be too much for me in one day, so my grandma decided to take me out of school three days a week and I went to school two days a week. I was able to get a home tutor.

Let me just say that when you have Cerebral Palsy, you have to keep working with yourself your entire life, because your body does get tight.

In my next entry I'll talk about starting therapy. Have a great day everyone.

Living with CP: the early years part 30.

Hello everyone.  I hope you all are having a great day today.  In this entry I'm going to tell you all about my first appointment with doctor Ellen Kitts. I'm also going to tell you about some of the events that followed that appointment.  Let's get started. 

Me again.

Prior to the appointment, we received a call as to what we were to bring with us.  The lady on the phone said it might be three hours before we could see the doctor so we were ready for a long day. 

Steve from ATG Rehab went with us that day because he wanted to hear what she had to say.  We were sitting in the waiting area and we kept seeing this lady come out in the hall.  She had white hair and she would just come out and walk down the hall and actually pick stuff up.  So we thought she was the cleaning lady.  After they called my name and the nurse did all that pre-check stuff, here came the doctor and it was that lady we had seen in the hall.  I think my appointment was scheduled at 1 o'clock and I got in about 4. Does that tell you how booked she was? 

Uncle Tom, Me and my Dad.

When she came in Grandma told her everything about me. She checked me and my chair out everywhere.  We were there about three hours talking to her and the first thing she wanted to get me was some occupational therapy, physical therapy and speech therapy.  She wanted everyone to work together to try to get my trunk stronger so I could sit up better.  Next, she wanted a new chair for me because she had determined that the one I had was too small for me. 

In my next update, see where we go from here. Have a great day everyone.

Living with CP: the early years part 29,

Hello everyone.  I hope you all are having a great afternoon today. In today's entry I'm going to tell you about two special people that have helped make sure of two important things, both when I was young and to this day.  One being that I had the right wheelchair and the other being that I was sitting correctly in the chair.  I will be  jumping around a little as far as my timeline goes so bear with me.  Lets get started. 

Me.

You might be thinking I could just go out and buy any electric wheelchair and sit down in it, and I'm ready to go right?  Wrong!  Since I'm on Medicare and Medicaid, I'm only eligible for a new chair every five years.  Not every wheelchair company works with Medicare and Medicaid. Before you can get a chair they have to approve everything before they will pay for it. 

This is why I have used ATG Rehab all my life to get my chairs.  When I was about 14 and a half, I moved in with my grandma and grandpa. At that time I was falling over in my chair and had saliva falling out of my mouth.  My grandma knew we had to do something because I could not do anything.  She spent about a week on the phone calling all around and we found a doctor that specialized in Cerebral Palsy.  The problem with the doctor was that she only came to town once every three months for 2-3 days from Wheeling, WV. When my grandma called to make the appointment they said they were booked up for a year.  My grandma started crying on the phone and the lady said come on in.  This was at the former St. Elizabeth's Hospital in Dayton and the doctor's name is Ellen Kitts.

My grandma also knew that she would probably want some major adjustments on my chair and I had one guy down at ATG Rehab that did all the work on my chair named Steve.  That day of the appointment he cleared his schedule so he could go with us to the doctor that day. 

In my next entry I’ll let you know what happened when we got to see Dr. Kitts.

Living with CP: the early years part 28.

Hello everyone.  I hope you all are having a wonderful day today. I have to more stories about Gorman School.  I also have a story about my first electric wheelchair, so let's get started. 

A Power-Wheel Jeep.

During the last 3-4 years that I went to Gorman School, someone gave the school 3 of those big Power-Wheel vehicles that kids play in, two Jeeps and a fire truck. The 2 jeeps were normal for the kids that could use their hands and feet without any problem.  The fire truck, on the other hand, was highly modified. When you got on it you could drive it with a joystick.  I think the main reason the school got those was to help the kids with their reaction time and thought process, and of course for fun! 

My next story also happened 2-3 years before I left that school. One year someone came in and said that they wanted to design and build a playground for handicapped people.  I never saw anything like it before.  It had paths all over it for wheelchairs, it even had huge swings you could get on with electric chairs. They would strap the chair down first and you could swing. 

Even when I was young, I could not sit in a chair by myself without some sort of support.   I get all my chairs at ATG Rehab in Dayton, Ohio because they make sure I'm sitting right.  I have to have side supports on my chair so I do not fall over. The older I get the more difficult it gets because my body is always changing. 

In my next entry I'm going to tell you about two special people that helped me keep up with those changes over the years and even to this day.  Also, the extra work that one of them did to make sure everything was just right for me. Have a great day, everyone!

Living with CP: the early years part 27.

Hello Everyone. As I said previously, my mother and dad decided to take a family vacation to the Outer Banks of North Carolina and my dad really wanted his mother and dad and brother to go with us for a vacation.  Let me give you all a little background information on my dad's parents first.  They lived in Cambridge, Ohio on the side of a hill in a old fishing shack.  They still had an outhouse until the early 90's and they just were set in their ways.  My dad's mother and father have since passed away.

The car we took.

My Uncle Danny lived with them. He was an Army veteran.  He is one of those people that like to stay up all night and sleep half the day.  A day before we left, the three of us drove to Cambridge to try to talk everyone into going. Grandma and grandpa said no but Danny said yes. 

Uncle Danny, me, and m

My dad and Danny decided it would be better to drive at night, so the next night about 7PM we are off.  Everyone thought I would go to sleep, because we drove 23 hours straight but I stayed up with everyone else.  We stayed in a house on the beach for a week, the house was on stilts.  We did everything in that town, it was a nice vacation. 

Have a wonderful Friday everyone, I might have a entry Sunday if not I will Monday.

My Mom and Me.