I Came I Stayed: How being born with Cerebral Palsy never slowed me down even at 80. AMA!

A friend of mine was diagnosed with cerebral palsy and the doctors said to his parents he'd never walk. He was lucky to have parents who didn't give up on him, but also a PE teacher that went beyond everything and gave him special classes before the school day started. I've never in my life met a more determined and positive person in my life as my friend. At an event in school where everyone competed in cross country skiing, my friend came running to his PE teacher screaming with joy about not ending up last in the event.

My question to you is: Did you have someone belive in you, that made a huge difference in your life, that wasn't a family member? If so, what did they do that you wish more people would adopt.

Thank you for your AMA and I wish you the very best!

I went to camp one summer for disabled adults and I met this wonderful teacher who was paralyzed from her waist down and still taught from her wheel chair and that inspired me to never slow down. I wrote about her in my book and how she helped me that summer overcome how I felt everyday.

how do you tie your shoes?

One shoe at a time

btw, lovely username

How severe is your CP?

Moderate, I once could walk with aid or walkers, now I use a wheelchair. That doesnt stop me from doing what I want. This is me in 1958 with a huge grin,ponytial,and glasses on the right of the afro'd gentleman http://imgur.com/gallery/Vy1hKJP

That photo looks like something from the early 1980s, going by the clothing and the hairstyles.

The Congressman photo was between 1974 -1978

Ah thank you! Figured I overlooked something.

Do doctors have any idea what causes CP, such as environmental factors? Can expecting mothers/potential parents do anything to lower the odds?

No, CP is caused by brain damage and it can be caused lack of oxygen to the brain. I had juandic and that is what caused mine. It's not always a birth defect. It can be caused by an accident. One person I knew was hit in the back of the head and it caused his.

Thank you for the response, wishing you continued success for 2016 and beyond!

Thank you

Deluxebury eh?

What was Kennedy like when you meet him?

Very Very friendly! I went to Washington and took a tour and while I was in the Senate office's they were in session and they asked who my senator was, I said "JFK" so they asked me to wait and once the session was finished he came and sat with me. We spoke about education, I mentioned about how difficult it was for me and he told me "To not give up and climb the ladder one rung at a time". He talked about his niece who also was disabled, and life in general. I wished I had a tape recorder then because I would of recorded our conversation, we spoke for about 15 minutes.

If a person has a serious medical condition that will likely be passed on to any offspring, does that person have a moral or ethical responsibility to consider that fact in considering whether or not to have children?

What are your own personal beliefs on this?

Well Cp is not genetic or transmissable, but to answer that question I would say No simply because they could adopt a child that needs a good home and still be loving parents without risking the life of another child.

Thanks for your response. I have always wanted to ask the question to someone who has had to firsthand live with a medical condition that has a substantial effect on their daily life. I am not sure there is a definitive right or wrong answer, but I appreciate you taking the time to offer your perspective.

Thank you

What was your biggest obstacle to overcome?

My biggest obstacle to overcome would probably be Education. I couldn't go to public school, and my mother knew she couldnt afford to put me in private so we had to fight for it. Thankfully after everything I received my Associates degree in occupational therapy from Manchester College in Connecticut and went on to receive my Bachelors in special education from Old Dominion University in Norfolk, Virginia.

The biggest obstacle now is to have the public accept me for who I am and not what I look like. People tend to talk down to me and that drives me up the wall. They treat me like I am mentally retarted because of my speech.

Thank you for your question

Thank you!

I grew up close to a young man with Cerebral Palsy. He was normal, as he could ride a bike and swim, but he rarely talked.

The kids on the street, myself included, never really made much of an effort to include him. We were say 8-10 years old. This was the 80's, so I hope kids are smarter today.

Even at 80 I am still fighting and advocating for disability rights, people today are wiser when it comes to the disabled but there are still issues.

Keep fighting!

People judge to quickly.

Oh yes! you have to keep working at it. Right now I am fighting to have a sidewalk put in by my building since so many people are disabled and they are walking on the open road to go to the store. I am afraid someone will get hurt or even killed. I have had the news station here and even went to washington D.C. a few months ago to speak to my congressman about it.

I was born in 1983 with CP and my mother's doctors gave her the same advice. I had little hope at a normal life and should be institutionalized.

I was quite lucky to have no cognitive or speech imediment, aside from dyslexia and dyscalculia. However, it was still a struggle for my parents to make sure I received age and grade appropriate education in the public school system. I had to learn grade level mathematics at home with a tutor, because the public school system insisted that I had to take special education math, which was 1-2 grade levels behind.

I didn't realize that I was actually good at math until college and that my supposed learning disability was simply poor mathematics education.

I have friends around my age (early 30s) who have children with CP, and they're still struggling to get public school systems to allow their cognitively normal children to receive appropriate education instead of a curriculum designed for students who do have legitimate cognitive and learning impairments.

Thank you so much for telling your story!

If you would like to know more I would love for you to read my new book.

Would you have had an easier time of it these days? Were less accommodations made when you were school age?

When I was younger it was difficult but I could walk then with a cane or crutches. The world has become more accepting of the disabled but I still advocate.

Thank you for doing this! What a fantastic and informative AMA. So many parents today look at Celebral Palsy as a death sentence.

What would you say to parents who just got the diagnosis of CP?

Tell them to treat them like a normal child, and go to the community and take him to all the programs that are available for children. The person comes first and the disability comes second.

What advantages or disadvantages do you think CP played in your teaching career?

A big advantage because teaching disabled children and the parents knew I was setting a good example. I encouraged the parents and children. I was able to push the children into doing new things easier then the parents could since they saw me try first.

I imagine you must have been an incredible role model to your students!

Thank you

Did other kids tease and make fun of you when you were a kid? When you taught other kids, how did you explain to them that they might be teased be because of there disabilities? Thanks for doing this AMA.

I didnt have to explain anything to them since they were disabled and all the other kids were polite to each other and knew what is was like so they didnt teae each other. I remember being teased but my parents always made sure I had playmates and I was never bothered by it. If anything it drove me to be stronger.

What was your childhood like? Did you go to school? Were doctors supportive or thought you should be placed in a hospital or care facility? Or anything else you can tell us about what it was like or how it compares to kids born with cerebral palsy more recently.

I went to 3 different types of schools. I was tutored for 3 years, then my parents decided that wasn't the best thing so, they sent me to gordon school for handicaped childre so I could be around more children. After that I went to the Massachusetts hospital school, I spent my first 6 years there. Recevied a formal educatio there. Then I went to a private school for 2 years and 4 years of Duxbury highschool. I received my Associates degree in occupational therapy from Manchester College in Connecticut and went on to receive my Bachelors in special education from Old Dominion University in Norfolk, Virginia. My parents made my life as normal as possible. When I was born the docotrs told my mother that he had already made arrangements for me to be sent to a state facility. My mother took me home and that was where i styaed. Giving me the title of my book, “I Came - I Stayed: The True Story of My Life with Cerebral Palsy”. Today they are more facilities for disabled people and aid for young people with CP.

Not OP but I work in childcare based at a primary school, and we have a 11 y.o. girl with cerebral palsy, and she's in mainstream education with all of the other kids. She has an education assistant in class with her, and my employer receives government funding so we can have more staff on to help her, but apart from that she is treated entirely normally. She is a lovely girl, with a brilliant sense of humour.

Glad to hear that

I imagine things have changed massively for disabled people since you were born (eg public perceptions, making accommodations like ramps etc) but what are some smaller ways in how things have changed?

The ADA gave disabled people many more rights. Acceptence is the biggest, when I was growing up you were not a person you were a problem. Todays community is much more helpful. Respect and Care.

Do you currently need anything?

This AMA is something I have been looking forward to for months, the next step is selling a book.

Are you single?

Yes! definitely, never married. I was to busy with my career for that.

ive heard it pronounced either way and im curious of the correct pronunciation is it (sarah-bowl pall-sey) or (sir-ee-browl pall-sey)?

Normally I just say CP, or most people pronounce it the second way.

Normally I just say CP, or most people pronounce it the second way.

My daughter has CP, she's very mild, walks around pretty good etc. I just don't know how hard to push her to walk "Better" or do her physio...... To let her be a child or not?

It's difficult at first to help a child since they feel different but if you go to the community and look for programs with other disabled people and they will motivate her to push herself.

Do you suffer from low blood pressure?

No, I try to eat healthy

ive heard it pronounced either way and im curious of the correct pronunciation is it (sarah-bowl pall-sey) or (sir-ee-browl pall-sey)?

Normally I just say CP, or most people pronounce it the second way.

Thanks for doing this AMA!

Have you ever felt bitter towards the world for the different treatment you have got e.g. being considered retarded because you didn't talk much?

I get annoyed when I go to a restaurant and they ask another person at the table what I might like to eat instead of asking me.