What is COVID-19? 👍

 It is a very difficult thing to explain COVID to a child, but it is the reality for many families across the United States, as families have lost loved ones and we send our children back to school.  With the craziness that is disrupting every child's life because of COVID, it is important to discuss the topic of the pandemic with them in order for them to understand and become comfortable with the new world around them.  The following video, is a great informative resource to educate kids on COVID in a manner in which they will understand.  

Talking to children about illnesses like COVID-19 can be scary.  So how can we explain what is happening in a way that they can understand and comprehend its severity?  Child Life Specialists do that very thing almost every day.  Here are some great resources and tools to help talk to children about COVID-19 specifically.

One thing that has stuck out to me with my interview with Shalya was that she wasn't able to talk to me about how COVID-19 has impacted her work with her children.  After thinking about it I wonder if that can be attributed, at least in part, to how low income her families are.  Shayla explained that most of her families are more worried about finding their next meal or having a blanket, basic necessities rather than worrying about COVID-19.  

References:

Brianpop. (2020, March 23). Coronavirus: How to Teach Kids About COVID-19 [video]. Youtube. https://www.youtube.com/watch?v=GoXxmzKdick

Ding, Angela. (__).  6 Books to Help Your Children Understand the Coronavirus.  https://www.worldreader.org/now/6-books-to-help-your-children-understand-the-coronavirus/?keyword=%2Bchildren%20%2Bcovid&gclid=CjwKCAjwoc_8BRAcEiwAzJevtTY5WDoVFu4lhkwx3llJ_vsLKstXDPCZrhKjrCJxlYWQJOsE-JmW1RoCC3QQAvD_BwE

My Assumptions about Child Life... 👍

 

My beliefs and assumptions:

With only my personal experience, I considered the work of child life therapy comparable to that of a fairy tale.  It was a job to play with children and make them feel better, in turn making the family feel better.  However, I have learned that, that is only a small portion of the work of a child life specialist.  A child life specialist, working with children and families within an inpatient hospital setting, is a friend, comedian, care giver, teacher, and advocate all wrapped up in the perfect package.  

My personal background and experiences:

I grew up in a household where hard work and education were held to the highest regards.  My mom being a former preschool teacher and owner, turned public school teacher and now a middle school administrator, had always instilled in both my brother and I that our education came first.  To be totally honest, unlike my brother, school did not come easily for me.  I have been told that from the time I was a baby until I was able six or seven, I progressed quickly and easily in school.  I was asked to be a peer in classrooms to help other students learn and grow from watching my abilities.  However little did we know that once first grade came along and I started to have significant issues with learning and retaining information that it was due to a brain tumor.  Although the teachers and educational system said I was doing ok at the time and just needed to work harder, my mother knew better; paying for tutors and reading specialists out of pocket to aid me in my studies.  It wasn’t until I moved to another school district that my learning disabilities were diagnosed, and I was able to get the help I needed to succeed in school.  

At that time it was my understanding that the only people who helped children were those who worked in schools; I was very naive.  At the age of sixteen when I was finally diagnosed with the Juvenile Pilocytic Astrocytoma, my very small world of those who work with children was profoundly increased.  During my three month stay in the nearby children's hospital, I interacted with doctors, nurses, social workers, and so many more.  However the group that most prominently impacted my time in the hospital were the Child Life Specialists.  At the time I did not know much about the program and what a child life specialist was or what they did.  However, I have since learned that child life workers have the important role of not only educating the children and families in a way they can understand, but also by helping them communicate their thoughts and feelings about the the experiences they are living .  

My research goals and interests:

This research project is important to me because I have learned first hand the importance of Child Life Specialists to a sick child and their family.  Many, if not most people, never get to meet Child Life Specialists. They never learn the behind the scenes benefits they provide to a child and family during a traumatic situation like being in the hospital.  With the impact of COVID-19 still in the forefront of our minds it is irrefutable to think about how the work of child life specialists has changed.  It is my goal during this research project to learn as much as possible about Child Life Specialists and how they are now changing and adapting to the new world with COVID-19.  In particular I want to include their work with play therapy.  Since COVID-19 has been creating such a conflict in the lives of children across the united states - it is interesting to see how Child Life Specialists are adapting.  

My second reason for this project being important to me is because given my history, I have become interested in becoming a integral part of a children's hospital team.  There is a new element to consider - COVID-19 an obstacle that must be addressed in order to talk to children and families successfully.

References:

Community Medical Center. (2020, October 17). What does a Child Life Specialist Do? [Video]. https://www.youtube.com/watch?v=C8MajVxEN0I

My Process 👍

After I graduated from high school in 2009 I applied to Rhode Island College and with the help of the disability center, I was accepted into the Bridges Program.  My experiences in Hasbro Hospital directed me to consider working with sick children in some capacity.  I explored the field of social work.  I graduated with my bachelors in Social Work in May of 2014.  During my internship at Metcalf Elementary School I worked with children in the Alternative Learning Program and I soon realized that social work was not exactly what I was looking for.  I wanted to help those in the hospital just as they had helped me; I wanted to make children in the hospital happy.  I wanted to provide an escape for them.  I had already taken some Youth Development courses at Rhode Island College so after talking to my advisors we developed a specially designed program for me.  I created an Individualized Masters Program through the Youth Development department with a concentration in Child Life.  It had been our plan to get an internship with Hasbro Children's Hospital in the Child Life department and that would be my capstone, counting towards my Child Life Certification hours.  However, I interviewed at Hasbro and did not get offered the internship... to be blunt I was beyond devastated.  How was I going to graduate?  How could this happen?  I lost faith in myself and my dreams.  I finished the semester - with not so great grades and totally fell off the grid.  After getting married my husband and I talked about me going back and finishing what I had started - his confidence in me was the little push I needed (I can't lie, it was a big push).  So in January 2020 I sent Lesley Bogad - one of my advisors at RIC an email asking to meet and talk about finishing my degree.  Easy and awesome right?  Wrong - COVID hit and screwed up everything, literally everything.  So rather than our original plan of internships and working in the field, we created a new plan.  A plan that involved the research I had already collected and interviews with Child Life members in the field to see how things have changed since the pandemic.  So here I am.

Why Child Life? 👍

Junior Year - 2008

At the age of sixteen I was diagnosed with a juvenile pilocytic astrocytoma... a brain tumor.  I have told my story so many times that I have honestly become numb to it.  Lets start at the beginning shall we?  My mom told me that when I was a baby until about around six years old, I excelled in my academics.  However that all came to a screeching halt in the first grade.  I have had issues with my memory and my learning ever since.   For years my mom paid for private reading tutors.  She would spend hours helping me with my schoolwork, which I just couldn't retain, and eventually I was supported with an IEP and additional services in school.  In addition to my educational difficulties, it would be an understatement to say that I was just a sick kid - I was sick constantly.  After a while I thought it was like my superpower.  Phemonia, sinus infections, and common colds were around every corner for me.  

March 9, 2008

Monday March 9th was the last day that I attended classes my Junior year of high school..  I had a headache but I went to school and dance like any other day.  After that, my headache was so debilitating that I didn't move from the couch; leaving the house only to go back and forth from to various doctors.  Multiple rounds of testing were done... I got bloodwork, I went to a neurologist for a full workup (which I passed), I had x-rays, and no one could answer what was wrong with me.  I started sleeping for hours.  I missed my friends.  I missed school.  I missed the world outside my house.  

March 24, 2008

With the blessings of my pediatrician and neurologist, my mother brought me to Hasbro Children's Hospital to find an answer.  Of course, I did not present as a sick kid - instead I was friendly and upbeat to each new nurse and doctor that came into our room in the ER - to the point that they called my pediatrician asking why I was truly there.  We were there for hours.  Finally, the CT scan showed a mass.  Soon after, they put a nurse in my room while I slept and took my mom for a walk down the hall.  From what she tells me they walked for what seemed like forever just talking but not really saying anything, then when they were far enough away from the room the doctors closed the door and explained... I had a brain tumor.

I was immediately admitted and moved upstairs to a room in the ICU.  And here is how the next three months went: I had my first surgery to remove the tumor on Wednesday March 26, 2008.  The tumor, which they concluded started forming around the time I was in the first grade, had been pushing on my hypocampus, the part of the brain that controls memory.  Consequently, the struggles I had growing up made sense - the trauma of surgery did not help the situation.  However the surgery was successful and the entire tumor was removed and the culture came back negative for cancer - I was scheduled to go home in a few weeks and return to my life.  Awesome, right?  Whelp, it would have been but days after the surgery, I contracted a rare water born infection from what we assume was due to a nurse attempting to wash the crud and goo left in my hair after surgery.  The infection destroyed everything.  

March 24 - May 13

If there was one word to sum up my nine week stay in Hasbro Hospital it would be hell.  To make a very long story short, the infection caused an absess filled with bacteria to form in the spot that originally held the tumor.  Over the course of nine weeks I had five more surgeries.  The surgeries in combination with the tumor and infection caused the ventricals in my brain to become so heavily scarred they stopped working.  Consiquently, I had to have external drains and brain shunts implanted to drain the cerebral spinal cord fluid from my brain into other parts of my body.  At my lowest, the infection was so destructive my brain had started to swell and become unaligned causing me to become paralyzed on my left side.  

Again I'm going to be very honest when I say my time in Hasbro sucked.  I just wanted to go home, I was well beyond depressed.  But through it all, I had people putting a smile on my face... Who were those superheroes you ask?  The Child Life Specialists and the nurses at Hasbro Children's Hospital.  They went above and beyond to make sure that my family and I were comfortable, had everything we needed and so much more.