I confess – I didn’t know much about CP either. Being a part of this community of people has made me realize that there’s so much we can do to educate and empower others, embrace life’s differences and grow in acceptance. So, here’s my little start to helping with that, and I hope after reading this you learn something you didn’t know before.
CP is the Result of a Brain Injury
You may think that Cerebral Palsy (CP) affects muscle groups, causing children and adults to have weakness. That is only partly true. CP is actually the result of a brain injury to a part of the brain that controls motor skills. Therefore, children with CP must work very, very hard to do what comes naturally to most of us, since that part of the brain that controls their muscle movement simply isn’t able to work properly or may not even be working at all. Imagine having a hand and not being able to use it! You can see it, touch it, and even feel sensations with it, but you have a hard time getting it to move the way you want – how frustrating, right? While I can’t imagine what this would be like, when you have a loved one with CP, you can see how hard they work to do the simplest task. That’s why such small milestones are always celebrated in our community – a new brain pathway has been built, which is huge!
It Affects Everyone Differently
You may think everyone with CP just has CP. However, this is also not true. There are different kinds of cerebral palsy. Diplegia affects both lower extremities (legs), and hemiplegia affects one side of the body’s extremities (ex. right arm and right leg), sometimes the arm more than the leg. This is the result of varying brain injuries, so it depends on what part of the brain is damaged that leads to a diagnosis. Additionally, there are varying degrees of severity of CP, ranging from mild to severe. Therefore, many children can still do things that other children can do, they just might take longer to do them because they must work much harder. While CP is an umbrella diagnosis, each child is unique and different in how it affects him/her, and even the same diagnosis can affect two children differently.
A Physical Delay Does NOT Mean a Mental Delay
Often, we look at children with braces, walkers or wheelchairs and think they are also mentally delayed. This is not always the case. Just because children or adults have a physical disability, it does NOT mean you should be afraid to go up and say hi, introduce yourself, or talk to them. Most likely, you will find that they will have a conversation with you just like anyone else. Physical and mental delays do not always go hand in hand. If you see a physical disability, don’t just assume that person is not smart, capable, or confident in other areas of his/her life.
CP Kids are Resilient
Their brains have been damaged, and yet they fight, persevere, and overcome huge obstacles that most of us can’t even imagine. Many of them have seen more doctors, hospitals and endured more pain in their first years of life than any of us will in our lifetimes. Did you know that these kids can re-wire their brains? That the brain may compensate for what’s been damaged and re-build that part of the brain somewhere else? What? How’s that possible? All you need to do is get to know a person with CP. You will see what a miraculous and amazing person they are.
Your “Sympathy” Hurts – It Does Not Help
This one is important folks, and I can say it because I have a child with a disability. It hurts my mama heart to even say it, but you need to hear it. If you look at a child with a disability and feel sorry for them, I beg YOU – please, DON’T. Please, hear me. Y’all – we MUST change how we look at disability. We must teach our kids it’s OK to ask questions, to figure out why someone is different than them, and to be OK with it. No child wants to be treated differently, and you shying away from them in ignorance and teaching your children “not to look” does not help. Don’t look is NOT the proper response – it implies that there’s something wrong. “What is on your leg?” is a totally reasonable and acceptable question to ask. In fact, I welcome the questions. I will teach Alex to say “It is a leg brace, and it helps me walk, like glasses help you see.” And usually, that answer is enough to a child. Why are we so SCARED of disability? Especially in times like today, we should be embracing all that is unique and different as an opportunity to learn and grow. Will you please help teach your children that different is OK?
Labels are Just That – LABELS
Have you ever received a diagnosis? PTSD? Post-partum depression? Anxiety? Anything really. How did that label make you feel? Did you feel like that one label completely encompassed everything you are and everything you will be? Doubtful. You know why? Because we are so much more than one label. I realized long ago that a word on a piece of paper means nothing. We must stop placing people in buckets as “this” or “that.” I don’t know about you, but there’s a whole lot more to me than one label. Kids with CP are the same – they are NOT their disability. They are so much more.
May we all love one another, embrace our differences, and lift each other up to be the best versions of ourselves.
Colossians 3:12: Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.
***I’m not a doctor, so I’m adding the disclaimer that everything written here is from a mom of a child with special needs and should not be used as factual medical advice, nor when making medical decisions or seeking treatment.