World CP Day 2019

In March 2019, I was given the opportunity to answer some questions about CP from 3rd graders in the Miami, Florida area.This was for National we're,Cerebral Palsy Awareness Month in the U.S. I have shared their questions and my answers below. Please feel free to share and help educate the world about cerebral palsy on WORLD CP Day.Thank you!💚

1. Hi!  Here are a few questions I want to know about you and cerebral palsy:  

1. I don’t know what it is like to have CP so is it really that bad and how bad does it affect your everyday life? 

 Hi! 😊 Well, I don't really consider having CP something bad. If I hadn't been born with cerebral palsy I would not have met many of my friends. Yes, there are times where I’m in pain and grumpy and want to give up and go hide under my covers but I always remember that there are people who go through other difficult things and keep going. I decide to continue on with my day. I have to have help with some things like getting ready for the day and cooking but life isn't always so bad! 

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1. Have you ever tried to do something about CP like taking therapy class or surgery? 

Yes, I have had two operations related to my CP and have done therapy all of my life. There is no cure for cerebral palsy, but a lot of things can help me to move easier.

3. Did you go to a special school? 

I went to regular schools the whole time I was in school. I went to school with able-bodied students and was in classes with them as well as students with disabilities. There was a classroom where those of us with disabilities would go if we needed help.

4. Hi!  I wanted to ask you a question.  What part of your brain did CP affect?

      

     CP affects the cerebral cortex. This is the part of your brain that controls muscles and how they move. CP can affect each person with it differently.

5. Hello, can cerebral palsy affect the way someone breathes? Yes, but thankfully I don't have a problem with that.😊

             

          

6. How do you feel about having CP? I don't really think about it too much. It's difficult when people say or do mean or ignorant things. It can bother me I'm in pain because my muscles are too tight, or a place isn't as accessible as it should be. Those things can make me sad and angry, but for the most part, I'm okay with it.

7. Hi!  I have questions:

1. Do you think your life is easy?

No, but no one's life is easy.

2. Do you go to therapy? Not right now but I do exercises every day.

3. Once it has affected your brain can it affect more? 

Yes, because your brain controls the rest of your body. The good news is CP is a nonprogressive ( this means it doesn't get worse over time)disorder so all the effects often take place at the same time.

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1. Do you think your life could improve from now. 

              Yes. I believe with hard work and perseverance anything is possible.

2. Does your CP bother you much?  Sometimes. It bothers me when buildings aren't as accessible as they should be or people make assumptions about me because I have a disability.

3. Did you go to a normal school as a child?  Yes.

Thanks You are very welcome! 😊

9. Hi, I was wondering what type of CP do you have? I have spastic hemiplegia cerebral palsy. That just means my muscles are very tense all the time and cp affects my lower body the most.

1. I also was wondering what is hard in your life?  A lot, but I do my best to make my life as full as I can. People with disabilities deal with a lot of prejudice and discrimination. There a lot of everyday difficulties too, such as reliable caregivers, and lack of accessible transport.

2. Do you wish your life was different in some way? Yes, I wish the things I just mentioned weren't so common.

3. Do people understand a lot, a little, or in between? It depends on the person and how well they listen to me when I try to tell them about my experience.

4. Also, how did you get CP? I was born too early. My lungs weren't fully developed and my brain didn't get enough oxygen. 

5. How does CP affect you? I have to use an electric wheelchair, a shower chair, and electric lift. They all help me do different things within my day.

6. Did you go to school when you were a kid? Yes.

7. Have you ever met anyone like you? Yep! Many of them are my friends now and have been since I was younger than you and your classmates! 😊

10. Did you go to a special school when you were a kid? No

11. Hello, nice to meet you ☺Hey there, nice to meet you too!  😊

1. How did you get CP?  I was born before my lungs were ready to take in enough air to give oxygen to my brain.

2. Do you have things that are hard for you to do?  Yes, What? Personal care things like getting ready for the day and some other things.

3. What type of CP do you have? I have spatic CP.

4. Do people treat you normal? A lot of people are very nervous when they first meet me. There's no need to be so worried though. I like and do a lot of things people without disabilities do. I like to read, listen to music, visit with my family and friends. I sing, write, and act because I love entertaining people.

5. What therapy do you do? I lift weights and stretch every day.

12. Hi    Hi 😊

1.  I wondered what things are hard in your life? It's sometimes difficult for me to move and organize things. A lot of things are difficult for me, but I have learned to ask for help when I need it. 

2. I wanted to ask what type of CP do you have?  I have spastic CP.

3. I wondered what would you want to be able to do if you could? I would be an ice skater.

13. Hi, do the types of doctors cure the full CP or only they cure some parts CP? Well, there is no cure for CP but there are doctors who can help me be more mobile.

14. Hi hello, I was wondering what everyday things can you do and not do? Hi, 😁 I need help getting ready for the day. Things, like taking a shower and getting dressed, are things I need help with, reaching things on high shelves or dropping things on the floor happens a lot.

15. Would like to know does CP affect your sight? It can. I wear glasses, but I'm not sure my CP is why I need them, I didn't need them until I was a teenager. 

16. I was wondering how you got CP? I was born too early and my lungs didn't get enough oxygen to my brain.

17. Hi Jennifer, here are some questions for you from me

1. Question 1:  what type of CP do you have? I have spastic CP.

2. Question 2:  do you have any friends that have CP? Yes, a few, and one of them is my very best friend. 😊

3. Question 3:  what is it like to have your kind of CP? Imagine being made of rubber bands that are stretched as much as they can be without breaking.

4. Question 4:  have you read “Out of My Mind”?  It is a great book. No, I haven't. I will have to visit the library soon!😊

That is all my questions for you

18.  Dear Jennifer,

1. What type of cerebral palsy do you have? Spastic CP.

2. What can you do? I can do a lot of things. I can write, sing, and act. In terms of everyday things I can help dress and I can do most of my own grooming. I can also cook as long as I can reach the stove and pans.

3. What can you not do? I can't do things like walk or run, but I am a very smart and creative person and can do a lot to help people. Everyone has things they aren't able to do, but I like to focus on the things I can do.

19. Dear Jennifer, I was wondering if one CP hurts more than one part of the brain? Sometimes it can.

20. Dear Jennifer, I’m wondering what kind of CP you have?  Also, how is it like to have that kind of CP? I have spastic Cerebral Palsy. It can be difficult because my muscles are very right most of the time. It can make it hard to move.

What do you think is hard? A lot of things are difficult for me. I can't tie my shoes by myself and find small zippers to be pesky, but I intend to keep practicing with these things and I ask for help in the meantime. There are people whose job it is to help people with disabilities complete daily tasks. They are called Home Health Aides.

1. How do you get around? I use a very cool electric wheelchair for short distances and an accessible van for farther trips.

2. What type of CP do you have? I have spastic CP.

3. What school did you go to? I went to a few schools. I went to elementary school, middle school, and high school in my hometown here in Michigan. I went to Wayne State University in Detroit. I also went to Southern New Hampshire University, but that last part was online.

4. Is it hard for you to do everyday things? It can be, it just depends on the task.

21. Hi Jennifer, I want to know if people have CP, does the CP always have to deal with moving and talking? Hello 😊.  CP always makes moving different, but not always talking.

22. Hi Jennifer, nice to meet you.  I have a question. Did your CP get better? Hey 😊. It has with a lot of work. My CP will never be cured and surgery, but even a little movement each day helps.

23. Dear Jennifer,

1. Can you move your legs and arms? Yes, I can, maybe not as easily as some other people, but I can. 😊

2. Did you go to a special college because you have CP? Nope.

3. Did kids ever make fun of you when you were little? Yes and it hurt my feelings a lot, but I had good friends and family to remind me of the good things in life and that people who do things like make fun of others like that really only have problems within them selves and the is why they're being that way toward others.

24. Dear Jennifer, 

1. What kind of CP do you have?  Spastic CP

2. Does it affect you?Yes

25. Dear Jennifer, it is nice to meet you.

1. I was wondering how do you get out of your wheelchair without hurting yourself and also what things you can’t do? I have an electric lift. It lifts me from my wheelchair to my bed or anywhere I want to move.

26. Dear Jennifer, I’m going to ask some questions, choose what you want to write wisely…just joking but…can you answer my questions.  

1. What type of CP do you have?  I have spastic CP.

2. Did you go to any special schools? Yes and No, I went to regular schools, with a classroom where those of us with disabilities would go if we needed help.

27. Dear Jennifer, hi, I have a question for you. How hard is it to get around in your wheelchair?  I am very inquisitive so, please tell me. It can be very difficult at times because not everywhere is wheelchair accessible and there are some times other barriers occur.

28. Dear Jennifer,

1. How badly do you have to get hurt to get CP?CP is a brain injury, so very badly. This usually occurs during or before birth, sometimes it can happen after, but that's a little more rare.

2. How do people enjoy their free time with CP? We do a lot of things everyone else does, read books, see movies, go to parks, play sports, and visit with our family and friends.

3. Are people with CP able to be the owner of a pet? Everyone with CP has different needs, but generally people with CP can have pets.

4. Can you not do certain things with CP? It all depends on the way the CP effects the person.

29. Hello, I was just wondering, what are some things you can’t do very well? I can't stand or walk too well but I'm hoping to get some very consistent and good therapy.

30. What do you do in your free time?  I love to read and go to the movies. I love listening to music. My favorite things are to write and perform comedy. 💗

31. Can CP affect how you breathe? It can but haven't had trouble with my lungs since I was very little 😊

Thank you all so much for your wonderful questions. Please have a safe and happy summer and remember to be kind.💚💚💚💚💚💚💚💚💚💚 

Sincerely, 

Jennifer 😊💗🤗

 

The City of Palmetto Bay, Florida lit up their City Hall green in March 2019 to show support and solidarity for those with cerebral palsy and their families. 

Photo credit:Karyn Cunningham 

What It's Like Part Two (Acceptance)

   

Photo credit- smbrokowski6 @ morguefile.com
This part, this is the genuinely difficult part. All of the physical complications of having a disability pale in comparison to the emotional issues surrounding it. I've always intellectually known I had a disability but 99.999% of the time I don't think about it. What color eyes do you have? How often do you think about your eye color?  The difference is eye color doesn't customarily impede regular activities.  In my case, that is my mindset regarding my physical self and its differences from that of many others. The adaptations I have and have had to make are entirely second nature to me. Sometimes when planning to meet up with friends I'll even forget to ask whether entrances have curb cuts or stairs.
Sadly, many businesses don't realize that there are actual technical standards for wheelchair accessibility and many still fall short. Such standards are known to be part of Universal Design. Universal Design is an integral part of the Americans with Disabilities Act of 1990. It's a form of design that allows something to used by as many people as possible. Not following the ADA is against the law, it isn't just "mean" or "unfair".
Beyond accessibility, there are issues of acceptance, inclusion, ignorance, equality, friendship, illness, loss, love, and relationships. The issues I listed here barely scratch the surface of my experience as someone with a disability. Everyone experiences these things but sometimes when you have a disability, you can be forced to deal with some of them when you're very young. I'm going to start with acceptance and inclusion. They go hand-in-hand and are the basis for relationships.

 Not being accepted by one's peers can be painful, especially when you're young. My first memory of non-acceptance occurred when I was about five years old. I wanted to join a group of children playing at recess. I barely got past "hello" before being scowled at and greeted with "you're weird, you can't play with us". Incidents like this are not uncommon regardless of circumstance. When someone has a disability though, the immaturity and ignorance directed at you doesn't always end with age. Cruelty and hatred can carry on well past childhood. People tend to make fun and act hatefully toward things they don't understand or to make themselves feel better about their own life.

The most frustrating thing about this, in today's world accurate information can be made available in seconds. Acceptance can be a wonderful thing but it has to come from within first. Please remember that whatever it is that makes you different can be an awestriking and grand thing. Who you are is who you were meant to be. You are worthy of kindness, respect, and love. 

Inclusion is an important thing and can be a catalyst for years-long relationships. I believe everyone deserves a chance to get to know someone or try something new. In my case though if I'm not wanted somewhere I would rather take part in another activity-solo or otherwise. I  want to be included but not simply because I have a disability and someone feels they have meet some moral quota. I want to be included based on who I am as a person. Being friends with someone with a disability can require a lot of patience and understanding. We generally move slower than most folks and a lot of daily living activities can take longer than even we expect on any given day.

When a lot of people look at me they see this beacon of courage and hope. The truth is I get scared about the future, just like everyone else. I get impatient with myself, others,and a lot of the processes I have to go through just to get the equipment and help I need. The previously mentioned ignorance often finds me on otherwise lovely days and tries to ruin my fun. I do my best not to let it, but don't always win. Sometimes things get heavy because at the end of the day it can feel like wheels are being spun but I'm going nowhere. On the plus side, I'm funny, a good listener, and an excellent advocate for myself and others, and an extremely loyal friend. Just don't steal my popcorn at the movies, that's annoying, just ask I'll share! :) Thanks for reading. See you soon!

Jennifer

What It's Like: Part One (Physically)

      Today's entry could have a number of titles. The most apt title, however, is the one I gave it. I'm going to do my best to explain to you what it's like to have cerebral palsy. I can only speak from my own experience. CP's effects vary from person-to-person. My own experience has changed as I've aged.

My disability causes my muscles to be spastic. They are constantly tense and my movements can be slow and stiff. When I say "constant", I mean that literally. There's no time during my waking hours where some or all of my muscles aren't tense. This isn't fun or comfortable, but it's my normal. The discomfort can change to pain quickly and often does. Exercise and warmth are the only non-medicinal remedies for this pain. Spasticity can lead to contractures. Contractures are the permanent distortion of joints caused by shortened muscles. They can impair function if not treated with physical and other therapies.

The best way to describe having spastic CP is that is very much like something out of a children's book. I feel like my body is made of rubber bands. My muscles are tense all the time and when stretched they remain tight until they're fatigued. Unfortunately, working out doesn't keep spasms and tension away for as long as the amount of energy exerted would make one think.

 It'll all return home like an obnoxious neighbor four to five hours later. There are no bodily superpowers that you get with this thing either, I wish for that all too brief time I could gain some height. I've always been very short. That's not much fun. Ohhh better yet I wish it'd allow me to float or fly in the air! That'd be fun and transportation would be  a  breeze! No dice. Damn. PT bends you so much you'd think you were auditioning for some sort of live-action Stretch Armstrong play. Those of you who are too young to know what I'm talking about may now Google Stretch Armstrong or 80s toys!

In the end, I wouldn't trade the vast majority of my physical troubles for anything. I have known people who have dealt with and are dealing with far more difficult challenges. I have been given seemingly simple gifts that were never expected to be given to me. Despite a life of many difficulties both current and former, I am grateful. Everyone deals with something. Everyone. I believe that with hard work, love, faith(in a high power, yourself, or both), and a lot can be accomplished. Thank you for joining me. See you soon! 💓

Jen

Photo credit: Skalunda via Morguefile.com

Hello :)

Hello Everyone,

My name is Jennifer. I’m 40-years-old. I’m trained as a public relations professional but have interests in several areas. I’m a writer, advocate, improviser, and singer. Some of this, I have left and returned to, for various reasons over the last of twenty or so years.

There are other facts about me that you will learn as this blog progresses. For this first entry though, I thought I would introduce myself as a person and explain why I wanted to reboot this blog. My goals in starting this blog are not only to make people more aware regarding disability issues, it is to encourage younger people with or without disabilities to be more active in their own lives and communities.

By more active, I mean in any and every way possible, especially in person. This is particularly true for those of us with disabilities, I believe the more we’re seen the more we are heard.  I’m well aware of the misconceptions relating to disability, however, I feel this provides us with more reasons to live loudly in order to be heard and seen. Your interests don’t need to lie in the arts. If you are interested in conservation, why not join a local environment group? I’m a huge believer in action and participation.

Yes, I have cerebral palsy which is a group of disorders that influence how an individual’s brain functions in relation to movement. In some cases, it can affect speech, cognitive function, CP is a form of brain damage. It can occur before, during, and after birth. There are multiple types and there is no cure. If you would like more information please visit The Mayo Clinic Website.

In my case, I need help with daily personal care tasks, transportation, and household chores.  Throughout my required education, I was in general education classes. I utilized special education for personal care assistance and accommodations needed due to the physical limits of my disability.

This blog will largely operate as a collection of stories from my own life, as I remember them, both past and present. It may not always touch base with a disability-related connection, because I consider myself a person first and foremost. I hope it spreads knowledge, hope, and entertains. Thank you for reading this first entry. Please feel free to share.  I’ll “see” you soon!