Every week this month, I have interviewed a member of our family about Cerebral Palsy. I wanted to kick off the series by interviewing S, but he wanted to be last. I believe he uttered the phrase, “Save the best for last.” I honored his request and saved him for my last interview. It has been interesting for our family to dig deep and answer these questions honestly.
What is your diagnosis?
I have Cerebral Palsy Spastic Diplegia (We found in paperwork we have been gathering for SSI that somewhere along the way doctors re-labeled him as having Spastic Quadriplegia. This is probably a more accurate diagnosis.). I also have Low Vision and ADD.
How does your CP impact you?
It causes my muscles to be naturally tight. This can be seen in my legs and my arms. My legs are impacted more than my arms. It can also slow my speech sometimes.
What tools/equipment do you need to use because of your CP?
I now use crutches to walk. I used a walker when I was younger. I use a wheelchair for longer distances and speed. I use AFOs to help straighten my legs. I use a keyboard for typing since writing is difficult for me.
You have spent MANY hours in therapy clinics and doctor’s offices. What are some memories you have of those visits?
*Regarding the doctor, it was a long drive (we drove to the Shriner's Hospital in South Carolina from Alabama).
*People were nice, but I didn't really talk to them (I was 4).
*When we were in California, they did e-stim on my legs. Did you like it? I don't know if I liked it but I could feel the buzz in my legs.
*I remember wondering what surgery on my legs was going to entail.
You had Botox injections in your legs when we lived in California. Do you feel that they were helpful?
I think they helped a little bit, but I have no memory of how effective they were (2nd grade).
You had muscle release surgery on both legs here in Virginia when you were in the third grade. Do you feel that surgery was worth the pain/recovery?
It helped me walk better.
By lengthening the muscles through the release, I was able to walk better.
Do you remember how you kept saying, "My heels. My heels." after you had your casts taken off? Yes. Why did you say that? My heels finally touched the ground, and it was a new feeling.
Any other thoughts/memories about your surgery?
*It was a process to get ready to go to the bathroom with my knee immobilizers.
*Once the casts were removed, I had a rash all over my legs.
*I remember the wheelchair they had me use afterwards was a piece of junk.
The footrests would fall off and not stay in place. It was hard to move around. I couldn't really do anything.
What is the most important thing you should do for yourself? Do you do that?
The most important thing I should do for myself is stretch. Sometimes I do it. I don't do it as often as I should.
What things aren’t you able to do because of your CP?
I'm not able to...Let's see....I don't think that's really been identified. My CP along with my Low Vision will keep me from driving. I can't go into the military.
Is that something you wish you were able to do if you didn't have CP? It would be nice to know I have the option.
What are things you don’t like about having CP?
*I don't like that stretching has such an impact on my ability to get around or not.
*Even though my braces help me, I don't like having to take the time to put them on.
*Having to use crutches or a wheelchair to get around instead of just being able to get up and go whenever.
What things do you wish you could do if you didn’t have CP?
*If I didn’t have CP to start with, I don’t know if I would be living in the United States since I was adopted from Bulgaria. Without the CP, I don’t know if I would still be in Bulgaria.
*If I didn’t have CP, going to college in Minnesota wouldn’t cause any problems. Right now, I’m concerned about the weather and getting around easily.
*I don’t know if there’s anything else. If my CP were to go away, it changes the equation for my life.
I think it’s because of the CP that I am able to do and have the experiences that I have right now. I don’t know anything different in my life.
What are things you have been able to do because you have CP?
*I think the idea of going into Carnegie Hall early was related to my physical disability.
*I have attended Victory Junction Gang Camp and met Richard Petty and Kyle Petty.
*Because of my CP, I used to get out of naptime when I was in PreK and Kindergarten. The school custodian would take me around to help fix things at school.
*I helped plant a tree at school.
*Because of my CP, I realized firsthand how different the California school system is. Even though that was a bad experience, I met a really good friend there.
*Because I have CP, my parents and I felt that homeschooling would be a better educational option for me during middle and high school. Because of this, I have been able to spend time in Minnesota during the fall and going out to my great uncle's farm for harvest.
What equipment do you feel has been the most helpful to you?
*I have a Smart Drive for my wheelchair which I recently got. I haven't used it much, but I think it will be useful in the near future when I am attending college.*My AFOs, crutches, and wheelchair are extremely helpful to me.
*Dragon Dictation is a very helpful program for writing.
Alabama: They were good and pushed me to be successful. If I needed something fixed/changed to make things more accessible, they were very prompt in taking care of it. I had the same teacher for PreK and Kindergarten which was very nice.
California: Oooooh...bum bum bum...I made friends. The teacher was nice, but she was not very accommodating. She didn't allow me extra time during timed math tests. I was left in the room during a fire drill. I met the principal in the walkway when I left the room myself. He was very nice, but I don't have good memories of the California school system.
Homeschooling in California: We went on a lot of field trips.
Public School in Virginia: Okay. Good memories. Well, anything would be better than California. Virginia took my education seriously. One of my teachers took the time to do technology meetings with me after school. The Assistive Technology person from the district was very helpful. The teachers were very helpful and accommodating. The aide who worked with me was very helpful when it was time for standardized testing.
Homeschooling in Virginia: Well, there were good days and bad days.
Was homeschooling a good option for middle school and high school? I think so. We didn’t have to worry about a battle for homework. It provided more flexibility for me.
Thoughts on college for next year: I’m not really excited about it, but I know it is the next step in my education.
What are things other people do regarding your CP that you dislike?
*I don’t like when people make assumptions about my abilities because I have CP - like assuming I need to attend a special school.*I want people to take the time to talk to me and get to know me, so they understand my abilities.
How do you think your CP has shaped our family?
Our family wants what is best for me, and we will all advocate to get that.
How do you think your CP has shaped you?
Having CP has helped deepen my faith. There are days that are harder to get around so I have to rely on my faith to get through that.
Any words of wisdom you would like to share with other kids growing up who have CP?
*As stated above, my faith is very important to me for getting through the challenges that CP presents.
*Do what your therapist tells you.
*If you ever have to have surgery, do everything the doctor tells you. You won’t want to go through it again.
*Don’t ever let anyone tell you that you can’t do something.
Any words of wisdom you would like to share with parents of special needs children?
My confirmation Bible verse was John 9:3. "Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."
Any other thoughts?
As someone who loves to study history, it is a little scary to know that in the past people like me who have had disabilities have been killed because of that.
CP Awareness - My Family's Perspective
I would like to thank my son for being honest in discussing his Cerebral Palsy with me and his willingness to share it with others.
You will find me enjoying time on the couch with chocolate!