Living with CP: the teen years part 2.

Hello everyone.  In today's entry I'm going to talk about how it was to bring a newborn baby home and all of the adjustments that had to be made in the family.  Let's get going.

From the very first day we brought Nicholas home from the hospital, we could see we were probably going to have some difficult times with the family dog.  When we came home, we sat Nicholas down on the couch in his car seat and the dog jumped up on the couch and was basically standing over top of Nicholas.  He did not do anything harmful, just smell him.  The dog was not a large one.  He was a Cockapoo.

We also must remember the handicapped son in the home, as well.  As you might guess, it was somewhat hard for me to get used to all the changes that were going on.  For the first 11 years of my life I had all the attention.  Now, I had to share it with Nicholas. 

My father is one of those individuals that likes to work very late at night.  It was not unusual for him to work until 10 or 11 o'clock.  That meant that my mother would have to take care of both of us and the dog all day long.

We thought as time went on that the dog would get better but unfortunately it got worse.  He started to tear up the carpet in the house.  One day my father put him on a chain in the hallway while we went away and that floor was linoleum.   When we returned home, he had damaged that floor.  We all knew something had to be done before he damaged the whole house. 

In my next entry see what happens next.  Have a great day everyone. 

Living with CP: the teen years part 1.

I hope you all are having a great day. Before I talk about my last year at Meadowdale High School, I'm going to tell you all about when I was no longer an “only child”.  Let's get started.

My first 11 years of my life it was nice and peaceful in the house. It was just me, my mother and my father.  They attempted to have other children but my mother had a miscarriage and another unfortunate pregnancy where the umbilical cord got wrapped around the baby's neck at birth.  Since he was full-term, he was named David.  When my mother found out she was going to try for lucky number 3, everyone knew that it was going to be a long 9 months.

Sure enough, when she went to the doctor he told her that he wanted her on complete bed rest the whole time.  They also gave her a monitor to bring home and wear around her belly 24-hours a day so that they could monitor the baby's heartbeat from the hospital.

It was so hard for my mother to lay around for 9 months and not do nothing and have everyone else do everything for her. She liked to get up and go and do everything on her own.  That being said, the 9 months came and went with no problems.  My mother and father named the baby Nicholas.

In my next entry, find out how it was to have a newborn baby in the house along with a dog and a handicapped son.  I’ll also get into how I came to live with my grandparents.

Have a great day everyone.

Living with CP: the early years part 42.

Hello everyone.  Before I get started with today's entry I just want to say thank you for your interest in this blog.  Yesterday was my best day for blog views since I started this blog, so please continue to tell your friends.  Now, let's get started with today's entry.

I'm going to write more about the three years I went to the hospital for therapy, and also when they decided to start me in water therapy.

When you have Cerebral Palsy, your muscles get so tight because of lack of body tone.  They have found out over the years that if you get in water that is about 90 degrees it relaxes the muscles and it makes it easier to move around.

Amazingly, when I got in that water I could hold on to a bar on the inside of the pool and walk around it all by myself with no problem.  Also, when you get in water you are lighter, so that also makes everything easier, too. 

The main thing to remember is to not stop working your body and to always try new things.  Also, don't ever give up.

Have a great day everyone.

Living with CP: the early years part 41.

I hope you all are having a great day.  Today, I'm going to continue to talk about how our vacations have changed over the years.  I will also explain all the work you have to do to make sure everything goes just right when you go on vacation when you have Cerebral Palsy.

As I got older and heavier, I have to stay in my wheelchair. A lot of people don't have to worry if the hotel room doors are wide enough to get a power wheelchair through or if the room is big enough for everyone to get around in.  Also, consider that if you don't want to drive your vehicle around town there are handicapped-accessible transportation options.

Someone can not just call one time and set up everything and be done with it. You have to call several times to be sure you have planned for handicapped accommodations before you leave.  If you don't do that, it’s likely that when you get there, something will not be right.

Also, it’s difficult to travel by air when you have a power chair.  You have to have special gel batteries.  It's also wise to have a copy of your wheelchair specs to give to the airline and even the captain of your plane.  Some of the smaller commuter airlines may not be able to fly with the additional weight of the power chair.  Be sure that if you have connecting flights that everyone is aware of the wheelchair.  Planning ahead is important.

It is also a good idea when flying to call your insurance company before you leave and see if you can take out a short-term policy to cover your wheelchair until you return.   That way if the airline damages your chair when they load and unload it from the plane, the insurance company can try to get the airline to pay to repair your chair.

You will find that through my experiences I have a lot of good information and tips.

Have a nice day everyone.

Living with CP: the early years part 40.

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!

Living with CP: the early years part 39.

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.    

Living with CP: the early years part 38.

  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. 

Living with CP: the early years part 37.

  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.

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.