Often times, when I speak to someone about Jayden and use certain words, I get funny looks from my listener. I realized that, like the military, cerebral palsy can have a language of its own. If I wasn’t Jayden’s mother and I listened to two other parents talking about raising a child with cerebral palsy it would probably sound like Aramaic to me. So, to help out, I’ve come up with a list of words and phrases commonly used by parents who have children with cerebral palsy and explained these terms in cerebral palsy language. Enjoy!
Disclaimer: None of this is meant to make anyone who isn’t raising a child with cerebral palsy feel “stupid,” nor is it meant to say that if you aren’t raising a child with cerebral palsy that you can’t possibly know any of this. Of COURSE you can. This is meant for the larger group of people who have had no exposure to cerebral palsy. It’s also meant to be a lighthearted display of how parents with cerebral palsy speak a unique language.
What most people think it means: Something regarding sound. The “tone” of one’s voice, “tone deaf,” etc.
What it means to cerebral palsy parents: The tightness of our child’s muscles. Very tight/tense limbs or muscles are said to have high tone. Limbs and muscles with less tightness, and possibly less control are said to have low tone.
What most people think it means: Botulism (which it IS, actuall) or, something rich trophy wives get injected into their faces to slow down the aging process.
What it means to cerebral palsy parents: A possible treatment for children with high tone and/or spasticity.
What most people think it means: I’ve never heard someone use the word spasticity before I had Jayden. In most instances people use the term “spaz” or “spastic” meaning high strung. Example: Calm down, don’t be such a spaz. OR Why are you cleaning the counter AGAIN? You’re spastic.
What it means to cerebral palsy parents: A fancier word for Tone. It’s usually used to describe a more permenant condition of high tone and is caused by neurological abnormalities.
Note: Spasticity and low tone are also reasons why children with cerebral palsy may have super fast metabolisms. See, even when we are relaxed, our musles are somewhat contracted, even if we don’t know it. If we were to completely relax our muscles, contracting them to create movement would be exhausting, because the effort would be intense. Children with cerebral palsy may not have enough contractions in their muscles for movement to be initiated from a relaxed state, thereby making them work much harder than most to move.
What most people think it means: Therapy relating to one’s actual occupation.
What it means to cerebral palsy parents: Therapy relating to upper body rehabilitation, such as treatments for spasticity or poor feeding habits.
What most people think it means: Therapy for adults who have suffered a sports injury or car accident.
What it means to cerebral palsy parents: Therapy that helps our children overcome physical limitations brought on by the neurological damage that caused cerebral palsy.
What most people think it means: Helping someone overcome a stutter or other speech impediment.
What it means to cerebral palsy parents: Sign language lessons, augmentive devices to assist in communication, speech cards, switch toys. Speech therapy isn’t about learning how to TALK. It’s about communication overall and I’m always amazed and how speech/language pathologists come up with such creative ways to aid in communication.
What most people think it means: Someone who can diagnose ADHD.
What it means to cerebral palsy parents: Someone who can detect seizure activity in our child’s brain and who can show you a brain scan detailing where the damage has been done to your child. Also, someone who can administer Botox treatments.
I’m sure there are many more terms that we use when discussing cerebral palsy, but these are the ones I find myself explaining most. Readers: What terms do YOU find yourself explaining to other parents?