Raising the Awareness of Cerebral Palsy

Raising Awareness of Cerebral Palsy

Cerebralpalsyguidance.com is a comprehensive source for information on the complex condition of cerebral palsy.

One of the major goals of National Health Education Week is to raise national awareness of major diseases and promote a better understanding of the role of public education in dealing with them, and this is certainly true in the case of Cerebral Palsy and the impact that it has on patients, their families, and the community as a whole. Cerebral Palsy refers to a group of disorders that damage the brain during the initial developing stages after birth or while still in utero. The resulting damage can affect the body’s ability to move, muscle tone, control, or coordination, reflexes, posture, and balance. There may also be intellectual impairments, vision and hearing problems, and epilepsy. Cerebral Palsy is a permanent condition.

When it comes to what causes Cerebral Palsy to develop in the first place medical science is still a bit in the dark. There is no single cause for the disease and in many cases, it is unknown why a baby is born with it. There is some evidence that certain complications with the birthing process such as asphyxia or lack of oxygen can play a role, but on the whole, it is still a mystery. What researchers are confident of is that there are a bunch of issues that can take place during the development of a fetus that can increase the odds of Cerebral Palsy developing. Chief among these indicators are premature birth, low birth weight, and blood clotting problems. Other possible causes for Cerebral Palsy can include an infection or environmental exposure (e.g. lead poisoning) while in the womb and genetic problems.

When diagnosing Cerebral Palsy there are certain markers that physicians look for as indicators. These markers are not generally the result of any single examination, but instead are part of a lengthy screening process that is usually conducted between the ages of 2 to 5. That said, sometimes the symptoms are severe enough that doctors can make a diagnosis shortly after birth. The screening process is normal for all babies and is designed to see if they are suffering a multitude of possibly life inhibiting conditions such as hypothyroidism, galactosemia, and sickle cell diseases. There are also a set of tests to check metabolism, hearing, and vision, as well as the APGAR (activity, pulse, grimace, appearance, and respiration) score which can all contribute to a diagnosis.

There are no known cures for Cerebral Palsy, however, there is a range of treatments available to help children reach their greatest potential as they develop and mature into adulthood. This often takes the form of assistance in learning how to control motor functions, speech, learning, and dealing with their environment. Medications are also prescribed to help mitigate muscle pain and stiffness, and in some cases, surgery is used to correct scoliosis which is a common trait among sufferers of Cerebral Palsy.

Cerebral Palsy affects approximately 1 million people in the United States and can be devastating if not properly diagnosed at a young age. Treatments are available to help, but perhaps the biggest help comes from raising awareness of this condition and to encourage research that will hopefully one day finding a cure.

 

Filling Gaps in Service: What Child Life Work Looks Like in a Private Practice

For some people it can be hard to imagine what the role of a Certified Child Life Specialist might look like outside of a traditional hospital based setting. Many hospital child life programs take years to develop and become fully integrated into the healthcare team. 

Read more

Supporting Colleagues: Spotlight on Child Life Cooperative

Supporting Colleagues Spotlight on  Child Life Cooperative .jpg

Guest Blogger, Allie Jones, Child Life Cooperative

Hello there!
What an honor it is to be a guest blogger for the Child Life Mommy!

I have had a couple of different encounters with Shani throughout the years, and I have been so encouraged by her support of the Child Life Cooperative. So today I am excited to share with you more of how the Child Life Cooperative came to be.

It was June of 2017. I had just become a mom to the sweetest little boy and was sitting on my couch while he was napping and was googling “child life stories” and “child life podcasts”. Though I could not be happier to be a first-time mom, I found myself also missing the stimulation of the child life profession while I was on maternity leave.

I craved the stories I shared with my child life co-workers. I loved the times when they would come back from an intervention and I would sit next to them, wide eyed hearing about their intense child life interventions they provided. I loved asking the questions, “then what did you do?” and taking mental notes as I learned from their skills and expertise.

I treasured the moments when I would come to the office, our safe haven, and sit at our conference table and begin to cry about a bereavement case. I valued the times when I would come fuming back from procedure, put my bag down and say, “Well, that didn’t go as I expected!” What followed was deep, meaningful clinical reflection. I crave it. We need it. We thrive off it in order to continue to grow and develop in our skills.

So, what if I could create a space that would promote reflection? What if I wrote a blog that would address the very real, raw and vulnerable parts of child life—the insecurities, the conflicts, the simple joys and rewarding moments. What if I spent time “sitting at the feet” of other professionals, recorded their stories from the field, and aired it on a podcast? What if I pressed in to my passion for learning and sought to develop resources that would support and empower developing child life students—the future specialists and leaders in our field?

After many, many hours and late evenings of dreaming and brainstorming with my husband, a gifted Career Coach, at our dining room table, the mission of the Child Life Cooperative was born: to learn by reflection, unite for support and equip students to advance the child life profession.

Child Life Cooperative Website Banner-1

I invite you to be a part of the Child Life Cooperative! Whether you are a student, child life professional, educator or maybe even a parent or professional from an entirely different field, I hope that you can be encouraged by the real and honest stories you will hear from the podcast, read on the blog, and view ways to support students in pursuing their professional dreams.

I also invite you to contribute and collaborate with me. I would love to talk with you more to learn about how I can support and encourage you in your professional journey or hear any feedback or advice you may have of ways to expand and develop the Child Life Cooperative.

Be sure to follow on Instagram and/or email me at: allie@childlifecooperative.com