What does it really mean to have cerebral palsy? Until I had a child with CP, I had no clue that it affects every person differently. As with any human, kids and adults with CP are as unique as their thumbprints.
In honor of National Cerebral Palsy Awareness Day (today!), I asked parents of kids with CP and adults who have it to share what they wish people knew about the condition. This is what they had to say.
One thing I really wish people got about cerebral palsy is...
"There are different types, and they don't all affect people the way you think they do (i.e., when I was a kid, I though CP was always spastic quad in a wheelchair)." -- Janet C.
"My son's motor and speech impairments don't mean he 'can't' -- he can get the same end result but in a different way." -- Theresa S.
"Our kiddos aren't so fragile, don't be afraid to talk to them or treat them like a 'normal' healthy kid. They have more love and wisdom than you could ever imagine!" -- Melly B.
"Just because I use a wheelchair doesn't mean I also have an intellectual disability. People look at me and assume I can't function at all, which isn't the case. -- Jane H.
"It's OK to ask questions. Please, ask. Don't assume." -- Megan C.
"It's not contagious!" -- Adrianne B.
"Cerebral palsy is not a disease!" -- Keri F.
"It is not a tragedy." -- Jessica M.
"One thing I really wish doctors got about cerebral palsy is how capable these special kiddos really are! Do not tell me how my child may never walk or talk because I'm just going to prove you wrong." -- Melly B.
"If you know one person with CP, you know one person with CP. It affects everyone differently." -- Annette B
"CP presents differently in people who have it. 'Well, she doesn't LOOK like she has cerebral palsy!' should be struck out of everyone's vocabulary because CP doesn't have a specific look ... And contrary to TV commercials for lawyers, birth injuries aren't always someone's fault. So no, I am not suing the doctor who delivered her." -- Theresia C.
"Although we may do things differently, we are human beings and should be treated as such!" -- Tyler M.
"My daughter has CP, your son has a peanut allergy, his daughter wears glasses, and her son wets his bed. We all deal with challenges, yet we all love our children." -- Malky H.
"Other kids can do the same activities with our kids, you just have to adapt them. They want to have friends, too." -- Tammie M.P.
"I tell people my son is Superman, he just spells it different: cerebral palsy." -- Jennifer L.
"We are more alike than different. We have feelings, hopes and goals. Assume we understand and respect us." -- Veronica N.
"'Even though it prevents me from talking, it doesn't mean that I don't love to be talked to!' I know this is what my son would want to say." -- Kim M.
"We don't need your apology and sympathy. We love our Matthew just the way he is. We will tell people when we get the infamous 'awww' or 'I'm sorry' that Matt is exactly whom the Lord intended him to be. He is wonderfully and fearfully made, so look out!" -- Jann F.
"If you know I have CP, you know but one of thousands of facts about me ... Although I have to plan around my CP every minute of the day, it does not consume my identity. I care about things outside of disability world. I'm planning to enter law school next year, and people always assume I'm going to work in disability rights. I get tired of the 'Actually, I'm interested in criminal defense' speech." -- Danielle O.
"Just because my son can't walk, crawl or talk at the moment, he's not stupid! He understands you!" -- Jenny V.
"It's part of who I am, not just a diagnosis. It wouldn't go away or go dormant when you want it to." -- Meg M.
"One day she will not just 'snap' out of it or grow out of it. So stop asking me when or if she will walk!" -- Trisha I.
"CP is not a choice. My child has a fortunately mild case, but it's real, and he's not pretending or being lazy about the challenges he faces for fine-motor conrolas well as things like running. He can't choose to be more graceful or coordinated, and he's doing the best he can." -- Laura R.
"It's very hard because of many things. One, you can't control your muscles very well. Another is the drooling and trying to control that. Third is that fine-motor skills are a pain. iPad is a great tool to use with anybody who has CP. I know this because I have CP." -- Jon S.
"Children with CP are made in God's image, and what makes society think God does not have CP? I'm the mother of a child with CP, and he has given me the opportunity to view the world in a whole new way." -- Duana B.
"It's not just my legs. CP affects every part of my body and causes chronic fatigue and pain. Please be patient, for I have to spend my energy wisely." -- Cara S.
"People with CP are actually way braver and way stronger than typical people because they live in bodies that are harder to manage." -- Sarah G.
"My daughter is NOT defined by her body that doesn't move like her typically developing peers, but by her brilliant mind that communicates through her eyes and vocalizations." -- Paige S.
"A little bit of effort from friends and strangers to include and treat our child with CP just as a regular kid goes a long way. As parents of kids with CP, we are hyperaware that seemingly minor gestures actually hold a great deal of meaning." -- Jen S.
"CP is what he has, it's not who he is." -- Tana S.
More posts from Ellen at Love That Max:
Breaking news: Special needs mom's head explodes!
Getting past the guilt you caused your child's special needs
Helping siblings of kids with special needs
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