March is Cerebral Palsy Awareness Month: How to be an advocate
Feb 26, 2019 03:13PM
● By Amy Green
Savannah wishes everyone a happy Cerebral Palsy Awareness Month. (Amy Green/City Journals)
By Amy Green | [email protected]
A lot of green things happen in March. Spring is coming. St. Patrick’s Day is the notorious wear-green-or-get-pinched holiday. It’s also time to start thinking about taxes — to start aligning bank account “greenery” records.
March is also Cerebral Palsy Awareness Month. A green ribbon is the energetic color and simple character to show support. For a social media post/tweet, consider doing a green ribbon tribute to recognize cerebral palsy and those who live with it. Positivity and little things can make a difference in showing how much a community cares.
Cerebral palsy (CP) is a neurological disorder that affects movement, motor skills and muscle tone. CP is caused by brain damage that develops while a baby is still in utero, during labor and delivery or soon after birth.
Adam Hunninghake, doctor of physical medicine and rehabilitation explains, “There is a spectrum of how cerebral palsy can affect someone, from very mild impairment to having spasticity in their limbs and having difficulty communicating.” It can be barely noticeable or severe. But there is no reversing or curing it.
Jana Murray is a long-time resident of both Sandy and Herriman. She has a 24-year-old daughter Savannah, who was born with cerebral palsy. Jana Murray has two and a half decades of experience keeping a child with cerebral palsy active, socialized and involved. There are rarely, if any, breaks. Savannah’s constant care is ongoing.
Jana remembers a disappointing day taking Savannah to a public municipal pool. Savannah needed to wear floaties (inflatable armbands) in order to swim safely, as the motor control area of her brain does not operate fully. The pool attendees would not allow Savannah to be an adult-sized person in the pool with floaties on. Only children were allowed to wear them, they insisted. There was no exception made to allow Savannah to exercise and enjoy the water because of their policy. Jana knows there’s room for improvement, with facilities making accommodations for handicapped individuals. A few realistic safety measures can help everyone participate.
Hunninghake said, “For all people, and that includes people with cerebral palsy, movement is vital. It’s what keeps us healthy. It’s what allows us independence. It lets us do things that give us quality of life.”
Jana offers solid advice on being a support for those with special needs. She is also a strong advocate for the caregivers.
“It can be uncomfortable to watch people with cerebral palsy move, interact and even eat. They can drool. They can be (what you might consider) inappropriate as far as a personal bubble space. They are human beings who deserve kindness. They do not always understand personal space,” Jana said with tears in her eyes.
Caregivers know this and work closely to help their children with CP. “It’s okay to be uncomfortable,” Jana assures. “If they are in your space, just be kind. They have needs too. It’s not an easy thing for anyone,” she said.
A caregiver might not accept everyone’s offer of help, because a person with special needs might require a professional for many situations. But asking a caregiver how to help best, in any small way, can be key. Just being friendly and inclusive is what Jana suggested most.
“I have a mom friend whose son has severe, severe CP. She would put stickers of race cars on her son’s wheelchair, just so that people would talk to him. I don’t know how much of that interaction the boy really understood, but it meant the world to his mother when people interacted with her son,” Jana said.
Another friend of Savannah’s gave her a dog-walking job, so Savannah could have an active, more grown-up type of experience she craves.
March is a good time (as any time is, really) to talk about the challenges of special needs, and what more can be done. Saying hello, giving a high-five and being inclusive is a good start. Invite a person with a disability to participate in an activity. The goal is to acknowledge and treat special needs people as one would a typical friend.
What are some other ways to support?
The City Journals welcomes thoughts on helping to raise awareness, acceptance and opportunities for community members with unique challenges. Follow on social media www.facebook.com/thecityjournals/to share or comment on this story.