Beginning the journey

Introduction: If you had a opportunity to prevent a lot of hassel and mendical problems for yourself, your child or adult child with cerebral palsy would you? Are you new to understanding C.P. and how to help with change and transitions? We will look at where to start. Did you know its possible to take their healthcare into your hands by taking certain steps to avoid loopholes in our health care system? We will explore transition stages, prevenative measures for adequate care and empowerment to reach goals and a bright successful future.

Do you have Cerebral Palsy? Do you have a child or are a caretaker of someone with C.P. ? Have you ever went through and faced interventions, transitions, with your loved one or yourself? By starting at the beginning, being diagnoised or hearing your loved one is diagnoised. A diagnoisis can be hard to hear and to accept.

A diagnoisis is not a life sentence.C.P. is treatable. Allow your child to be as indenpendent as possible, after all, all we want is to be like everyone else.

The diagnosis is a shock in itself. What’s the best thing we could or should do? I believe, first and foremost is to educate ourselves, our children, our family, those who are going to be come in contact with our loved ones. Educating them on the type of C.P. you or your loved one are facing. Knowledge is key. Asking questions until you get answers and understand exactly what it is. It is vital to discover what your necessary steps are in caring for yourself or your loved ones.

Are you aware there is different types of cerebral palsy?And that no two people are exactly identical? Why? Due to different areas of the brain being effected causes everyone to struggle differently to some degree.

Intervention! Getting involved with specialists, doctors, can help aid you as an adult, or your child with their specific needs caused by their diagnosis. Yes, facts show that we are all different. From mobility to speech, to types of assistance we need. I say we because I am an adult with Hemoplegia type C.P. which is where my left side (arm / leg) are effected. As a child, my future consist of constant surgical procedures, hospital stays, being in a wheelchair for weeks at a time due to not having any balance, I was unable to use cruches. This was constant until I was 16 years old. I attended the Shriners hospital. I reccommend any parent to get their child into a Shriners hospital, they are a wonderful asset to children.

First, let me say as a parent, it is our job to advocate for our children. Yes, I am a mother myself. Not to mention to educate ourselves so we can teach our children what their diagnosis entales, so they can learn to advocate for themselves as they get older. Doing all we can do to help them taking them to P.T., O.T., getting them necessary surgeries are just a few things that as a parent you will encounter.

Keep in mind, not everyone is knowledege about Cerebral Palsy. Be aware your loved one will silently struggle due to being different and having to figure things out, they will feel alone in this world from time to time. Its import to embrace what you can not change.

Transition number one, growing up. Going off to school, brings on new adventures. It important to take these opportunities to teach teachers, classmates and make them aware of the limitations, struggles your child may have. As children can be very cruel and that is not acceptable for any person or child with a disability. There is a lot of support and helpful services that schools do provide, such as physical therapy, occupational and speech therapies getting your child into these services are so important along with an IEP (individual educational plan)

Life with any disability is a a challenge at all ages and a constant educational opportunity, do not be afraid to let your voice be heard. Its also important to encourage your child, teen even your young adult child, even yourself to reach for the stars and go forth with what they want to do with their life. Its important to not hold them back, rather encourage them and help them be the best they can be. I bring this up because, doctors were alway telling my parents to not allow me to do certain things and told them I could not do certain things, so, everytime I wanted to do something I was told you cant. Tell your child you can. Anything is possible to those who believe. Keep in mind every accomplishment is a milestone.

The experts show us with facts that it takes us who struggle, that we use twice the energy, as a abled bodied individual. please be patient with your loved ones. Love is forever changing and evolving, it is hard for us who are limited to adapt to change. I personally do not like change and there is constasntly going to be transitions that we face in life. Transition number two is transitioning into adulthood, starting in high school, yes, start this process for your loved one in the later years of high school so that by the time they graduate they will be somewhat prepared for the real world. I believe a big part of being a parent is empowering our children. Through my experience recently as an adult was getting my shriners medical records, not realizing the shriners hospital I attended, was still open at least the records department, because, the hospital I attendfed had been shut down, so, I was under the understanding I could not get them. However, this was a life lesson for me and opened my eyes to some of the flaws in the healthcare system. I bring this up because, in order for your child to transition into an adult, they will have to establish care with adult providers that may not be knowledgable or experts on their disability as their petrician was. My life lesson I wish I had then was for the shriners to give my parents my medical records, or for them to request a copy, so that I could have them when I transitioned doctors. Why, you may ask? because, what was in my records could have helped me to stay on top of certain things like the scolosis I encourted later on in life. I discovered that it was all in my petatric records.

Having information at transition time will make a world of difference for your loved ones. Empowerment is the key to a successful future.

Not only is it important to be active in the care they need, but to go the extra mile and help them accomplish their goals in life, such as getting a job, getting involved with support groups. There are adult support groups for people like us, do searches on facebook and possibly in your community, such as equine therapy which, I believe is a wonderful program. As I mentioned we want to be like other people to have as normal life as possible. After all we are non-abled bodied individuals living in an abled-bodied world. We are the ones having to adapt and figure things out.

Conclusion: raising a child / adult child and even struggling yourself with cerebral palsy is never an easy task. It takes a lot of hard work, dedication, advocating, determination, and staying on top of things such as health care issues, socialization and support. By taking opportunities to educate, taking prevenative measures to provide adequate care into their adulthood. Love conquors all. Shoot for the stars and never give up. Most importantly say I can rather than I can not.

Author: My cerebral palsy life

I became a writer in 2010, then I pursued an education in health care administration. Working to get a medical coding certificate to add to my professional titles. I and my husband have 2 adult children, 2 dogs. I was a single mother of two for 18 years. I have personal experience in health care as a cna, mental health and raising children with developmental disabilities. I am an advocate for the disabled as I was born with cerebral palsy and have learned to overcome challenges in life. My motto is life lessons are to be teachable, to educate, share our skills and learn to understand others that we encounter on life's journey.

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