Down Syndrome or Down’s Syndrome, also called Trisomy 21, impacts one in every 700 births. Down Syndrome is special to me in the form of my Aunt Carol. I wanted to take time to share about Carol, how she impacted my life and how her and my grandmother lead me to become The Family Navigator.
Carol was born in 1946 and was my Grandmother Laura’s, second daughter. At first, no one diagnosed her with Down Syndrome. Laura brought up over and over that she felt Carol wasn’t meeting milestones and seemed like she had some challenges. She was frequently told that some children develop at different rates. My aunt, who is Carol’s older sister, said she doesn’t remember when or where Carol was finally diagnosed with Down Syndrome, but remembers Laura telling family about Carol’s challenges. It was a difficult for Laura and her husband, James. I can’t even imagine what it was like then without access to additional doctors, quick medical information and specialists. At some point, Laura was told to put Carol in an institution, but she and I share a stubbornness that knows no end and she refused. Carol was her daughter and she was going to do what it took to raise her.
For the next 18 years, Laura pushed boundaries, made places reconsider their rules and helped create a parent organization that was later enveloped into the ARC to support parents raising their children with disabilities. Carol went to public school, went everywhere her family did and enjoyed playing with neighborhood kids. She grew up with one older sister and 3 younger sisters (the youngest one being my mother). Her life was not without difficulties, but Laura was not one to discuss those in detail.
Now fast forward to the mid-80s when I came into the world and knew my Aunt Carol. I can’t actually remember when I was told that she had Down Syndrome. I’m not sure if someone came out and said it or I asked. I just knew that Aunt Carol lived with my Grandma because she wasn’t able to live alone and needed help doing things. To me this wasn’t too odd as my great aunt also lived with my Grandma (my Grandfather passed the year after I was born).
Aunt Carol adored me as a baby, toddler and kid. I remember that she loved the Wizard of Oz- she could watch it every day and acted as if it was the first time she saw it. When we moved to NC, she wanted us to get her a Wizard of Oz from NC, as it was different. I remember saying “Oh maybe she thinks that because the cover of the VHS is different.”
She loved music, especially Elvis. She would listen to songs over and over again in her room. If it had to do with Elvis, she had to have it. This was the same with Mickey Mouse. Her room was decked out! I remember loving to visit her room because she always had the Mickey toys, watches, and jewelry. I enjoyed spending time with my Aunt Carol.
Carol was an active bowler and competed with the Special Olympics. Even as she got older, she wanted to continue to compete. Bowling allowed her to belong to something and I know that both her and my Grandma embraced that.
Everyday she went to work at the Workshop where she stuffed boxes of straws, utensils or a similar task. Her favorite part was using the vending machine. The best part was she wouldn’t always eat the snacks but instead brought them home. When I came to visit there were so many vending machine snacks!
One thing I was always told is that people with Down Syndrome are happy. I know from experience, and the research, that is not always true. Yes, small things made my Aunt Carol happy, but there were things that upset and frustrated her. Aunt Carol wore hearing aids and as she got older, it was difficult to understand her voice sometimes. She would get very frustrated when she wasn’t understood or couldn’t have what she wanted. She also would turn down her hearing aids when she didn’t want to talk to people. Family joked that you couldn’t talk to her when she ate because she would just grunt at you and ignore you. We just learned her quirks and tried to help her the best we could.
Aunt Carol needed support staying active as she got older and would be grumpy when my Grandma tried to get her away from the TV to go walk or exercise, but she usually did it. My grandma almost never accepted help with my Aunt Carol, until the end of her life. I’m not clear on the details, as I was a teenager, but I know at some point my Grandma couldn’t lift or move her anymore and had to accept help from an aid and then ultimately a nursing home. I remember Grandma was heartbroken but knew that it’s what she needed. Aunt Carol was deteriorating and did not live much longer. She passed away at 56 years old.
What I saw after my Aunt passed is that my Grandma finally aged. She had been taking care of Aunt Carol and was the strong one for so long, she could finally show her age and become old herself. She didn’t know what to do with herself either- she had been a caregiver for so long, not having that was difficult for her to find her place. She also loved and missed Carol- she was her life, and her child for so long.
Down Syndrome taught me many things. It’s the reason I coached track and field and bowling in middle school and high school. It’s the reason I was patient with all of my classmates and helped in the EC classrooms. It’s why I went to college for Psychology and later to get my Masters in Special Education. I saw something I understood, something I could help with and wanted to do that.
But years later, in reflecting on what I witnessed, I realized something further. I saw the joy that it brought to my Grandma’s life but also the hardship. She needed someone to come beside her and hold her hand through some of the processes she went through, and no one was there. She became that person for others, she became the support person. She didn’t have the internet, she just had the community around her. So when she had a question, she usually had to find the answer from others or figure it out on her own. She became the expert in her child and let others know that when they tried to tell her otherwise.
And ultimately, that’s what led me to The Family Navigator. To leave a comfortable job to take on the cause I feel led to- helping parents be the best parents they can be! I want to be the person my Grandma didn’t have and hold a parent’s hand from diagnosis to support. Find a community and system with them that they can depend on long-term and who can continue to empower them to be the best expert their child has. I want to help the Laura’s of the world so they don’t have to take on the fight alone.
I am so grateful my Grandma fought for my Aunt Carol and that she was a part of my childhood. I couldn’t imagine my life without her!
Resources to learn more about Down Syndrome and support: