As spring approaches, millions of high school seniors get one step closer to their career and to becoming the person they have dreamed about growing into since they were children. Receiving college acceptance letters is one of the most profound experiences in a young adult’s life. Moving out of your childhood home and stepping into the real world is a majorly exhilarating life event.
Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
Saturdays were special as a kid growing up in Port Washington, New York. Saturdays meant Burger King outings with my grandparents, a great big slice of trade-marked Hershey’s chocolate pie for me and piping hot oatmeal for them. And we can’t forget about the Kids Meal toys. But on this particular Saturday, everything was different - at the tender age of five, I started to notice that certain aspects of my life were just off.
One of the hardest moments during quarantine for me was when my apartment building announced its gym was closing to prevent the spread of coronavirus. As the outside gyms closed all around the city in the weeks prior, I felt grateful that the one in my building was open. The gym was the lasting lifeline to my sanity, and to have that yanked away from me, I felt lost.
I don’t know if this is just me, but my time in quarantine has made me have weird flashbacks to my childhood. As a kid growing up with CP, especially with a speech impediment and mobility limitations, my lifeline to making and keeping friends was through AIM (AOL Instant Messenger, for those of you who are too young to remember) and one of the first video chatting platforms, ooVoo. Fast forward 15 years, many of us are in a similar situation. To slow the spread of COVID-19, most of life has moved online, including friendships.
As I progress in my career as a journalist and writer, the more attention and followers I receive on social media. Every so often, I receive a direct message or email from young readers, explaining how I’ve become a role model for them. They express the inspiration they gain from witnessing me not allowing my cerebral palsy get in the way of following my dreams. It was then that I realized I am now the role model that I desperately needed when I was a young girl.
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
Owen is our third baby and after a healthy pregnancy and making it to 38 weeks, I thought we would coast into life with three kids and adapt to the beautiful chaos that is life outnumbered by little ones. Somewhere in between, I ended up watching as my newborn baby was packed up into a life-flight helicopter and whisked away before I even got a chance to hold him. I would do whatever it took to get to Owen at Nationwide Children’s Hospital, I would will him from hundreds of miles away to hang on, to fight long enough for me to get there – and then we could do “whatever it took” together.
What we learned from our defensive lifestyle is that it’s normal to feel this way. It is a lot of information to process all at once and it’s an emotional rollercoaster immediately following a CP diagnosis. We realized that our diagnosis wasn’t what defined our child. She is an amazing little girl who is full of personality, she isn’t a fragile flower that needs to be sheltered, and by realizing this we were able to go on the offensive, and attack the challenges head on.