Courtney Camarillo, a rising senior at Florida State University, spent the summer of 2020 as a genetic counseling intern at the Greenwood Genetic Center-Greenville.
Courtney has developed a video and worksheet for Special Siblings. You can access both at the bottom of this page...
My Journey to GGC
have a special connection to the Greenwood Genetic Center (GGC) - my sister, Lizzy, has Phelan McDermid Syndrome (PMS) - a rare chromosome disorder
first characterized at GGC in the early 1990s. Employees of GGC including, Dr. Curtis Rogers, MD,
and cytogeneticist Dr. Katy Phelan were instrumental in the development of the Phelan McDermid Syndrome Foundation. The Greenwood Genetic Center continues
to provide support through clinical services and research for patients with Phelan McDermid Syndrome. My involvement with the Phelan McDermid Syndrome Foundation,
in addition to my interest in genetics, made my opportunity to intern at GGC feel surreal. I was allowed to work alongside healthcare professionals
whose efforts have positively impacted thousands of lives, including my own.
As a younger sibling, I’ve felt the impact of having a sibling with special needs for my entire life. Like many special siblings, I have a complex relationship
with Lizzy. It was always a challenge to discussing Lizzy with my peers. I had heard of a chromosome and I knew it was the reason why Lizzy was different,
but I had trouble communicating it. I was intimidated by the complexity of genetics, but I have always aspired to make a positive impact on Lizzy's
life and the lives of others who face similar challenges. I underestimated my ability to understand the genetic aspect so I focused on what I could
do to support the people around me.
My sibling advocacy career began in 2010 when I created 'Courtney's Clubhouse'- a safe space for PMS siblings to connect at Phelan McDermid Syndrome Foundation
conferences. 'Courtney's Clubhouse' was intended to be a space for me; I wanted to make friends with the other siblings. I realized that we needed
a space where we could form relationships and have fun together as individuals rather than just PMS siblings.
Creating “Special Siblings, You Matter Too”
Through my personal experiences and observation of other siblings, I realized the significance of special siblings inspiring me to continue making resources
for people like me. My internship at GGC inspired me to think of ways to provide better support for patients and their families.
Through my shadowing experiences at GGC, I utilized my experience as a special sibling to relate to the complex emotional journeys our patients have experienced.
During my time at GGC I had lots of moments of reflection; both from my perspective as a future health care worker and as a special sibling. I wanted to
create an accessible resource for siblings- something that could validate their experience. Most of the resources I found for siblings were helpful,
however, I couldn't find anything that was validating or offered support for the emotional experience of a special sibling. To accomplish this, I did
some research and combined my experiences with larger discussions about being a special sibling, in scientific journals and on internet platforms.
I identified three important areas for special siblings to keep in mind:
The importance of celebrating yourself
Acknowledging your negative emotions
How to ask for help when you need it
The Importance of Celebrating Yourself
It sounds cheesy, but as a sibling of someone with special needs, you have to take time to celebrate yourself as an individual. Having a loved one with
special needs can feel overwhelming- but it doesn't have to be. Having Lizzy as my sister has given me a unique outlook on life, but I have to remind
myself that I’m Courtney, not just “Lizzy’s sister”. It's important for siblings to remember that they owe themselves the same level of encouragement,
kindness, and attention that they would give others.
In my efforts to celebrate myself, it was vital to have my own hobbies and to spend time with my family members both with and without Lizzy. It's important
to spend time with your sibling to strengthen your bond; it's just as important to spend time alone to strengthen your bond with yourself and with
your parents to strengthen your relationship with them.
Acknowledging Negative Emotions
I think that being a special sibling has helped me become more empathetic, understanding, and reflective. I recognize that being a special sibling can
be incredibly rewarding, however, it's important to acknowledge the struggles of having a sibling with special needs. It's uncomfortable to talk about
your negative emotions especially when they might be directed towards your special sibling.
I remember feeling guilty for having negative emotions about Lizzy. I knew that it wasn't Lizzy's fault that she was different, so I felt incredibly guilty
for having or expressing negative emotions about her or her behaviors. I believe it's essential for special siblings to view their brother or sister
as an individual, rather than their diagnoses- A lot of my guilt was alleviated when I reminded myself that Lizzy is my sister and sisters can be annoyed,
frustrated, worried, or embarrassed by each other sometimes.
How to Ask for Help When You Need It
At times, being a special sibling can be an emotional rollercoaster, making it important to know how and when to ask for help. I remember being confused
about how to ask for help when I was younger, and it can be really scary to allow yourself to be vulnerable to someone else. I always wanted to be
strong and tough and not voice my struggles or be difficult.
As I got older, I realized how crucial it was to have a safe space to discuss my feelings, both positive and negative. I found it incredibly helpful to
identify someone I trusted, tell them what I needed support with, and ask them to help me make a plan of how to cope with these thoughts and feelings
in the future. I encourage other special siblings to seek out support from someone they trust. It feels really scary when you first ask for help, but
it's important to remember that the people who love and care about you will want to offer you support when you need it.
I hope this video can provide some validation and support for other special siblings. Having a sibling with special needs can be complicated as it is simultaneously
rewarding and challenging. As special siblings, we must appreciate and acknowledge our thoughts, feelings, and ideas because we are just as important
as anyone else.
We will remember February 26th for the rest of our lives.
On that day, we received the call from the Greenwood Genetic Center that they had discovered our daughter, Ella Marie, has Kleefstra syndrome.
Very early on, my wife, Kelly, observed Ella being delayed in some of her milestones. Kelly monitored Ella’s progression and sought out testing in an effort
to get Ella some assistance. Along the way, we were sent to GGC and met with Dr. Roger Stevenson ...