Cerebral Palsy Awareness Day is March 25th, and in honor of it, I wrote this post.
Cerebral Palsy is something that greatly affects my family. My beautiful son was diagnosed a little after his first birthday. That was a moment that would change our lives and our future forever. Life with Cerebral Palsy is full of adapting, growing and forever learning. There are a lot of failures and successes. A lot of laughs and a lot of tears. It is not an easy life, but with how amazing my son is, everything is worth it. I work very hard to raise awareness for the condition my son has in the hope that one day people will be able to understand him a little better and be better educated on how to help him, other children, and adults like him.
- Cerebral Palsy (CP) is a disorder that affects a person’s movement, muscle tone, and posture.
- The exact cause of CP is still unknown. Risk factors include when children are:
- born too small
- born too early
- twin or multiple births
- conceived by in vitro
- have birth complications
- have brain damage
- Early signs of CP are when:
- a child feels floppy or stiff
- a child’s legs get crossed, stiff, or scissor when picked up
- a child has difficulty bringing hangs together or to mouth
- a child crawls lopsided
- a child scoots around on their butt or knees
- CP is the most common motor disability affecting 1 in 345 children. Based on calculations made by the 2020 census, an estimated 100 children 18 or under have been diagnosed with Cerebral Palsy in the Knoxville area.
- There is no cure for CP, but it does not get worse over time.
- There are four main types of CP:
- Spastic CP: causes tight muscles
- Dyskinetic CP: causes muscle tone to change throughout the day and either become too tight or too loose
- Ataxic CP: causes trouble with balance and coordination
- Mixed CP: is a combination of any of the above type
- CP is not contagious.
- People with CP can also experience:
- Gastrointestinal issues
- Respiratory issues
- Vision impairment
- Hearing impairment
- Epilepsy/ seizures
- Learning difficulties
- Intellectual difficulties
- Speech impairment
- CP is not hereditary or life threatening.
- There are several treatments available and early detection is extremely crucial.
Bonus fact: CP is a very large “umbrella diagnosis” over a large range of complications because CP affects every person differently! Please seek the care of a doctor if you feel like your child has any kind of complications. Watch this video for more, cutely given, information.
What this mom wants you to know:
- Even though my son may have complications, he loves to participate with other children, so please don’t exclude him because he is different.
- I do not expect you to bend over backwards for us either
- When I come off as standoffish or distant, I most likely have a million things on my mind and am having trouble sorting through it all.
- I dream of a day when children and adults with disabilities aren’t looked at as outcasts.
- Please don’t be afraid to ask me questions about my son. I want to educate as many people as I can. Just please be nice.
- Please educate your children.
- Let children ask questions. It is one of the only ways they will learn. Don’t be embarrassed; most of the time it comes from innocence.
- When you’re waiting for us, please be patient, simple tasks take us a little longer.
- Illnesses that may seem minor to you, have a great and long lasting effect for us.
- I don’t ever want to stop celebrating your child’s accomplishments.
- If you want to help, ask what is needed instead of assuming. Sometimes just being there is enough.
- Every child is different and amazing in their own way!
To the moms that can understand:
I see you.
I know. This is not an easy life. There are a lot of times things can feel too overwhelming.
I know how hard it is seeing children of friends and relatives grow, knowing it is possible you will never experience that with your own child.
I know the struggle of longing for your child to be accepted in a world that can be so cruel.
And I have felt the heartbreak looking into the eyes of my child knowing they are hurting.
I know what it’s like to feel there is finally progress, just to take several steps backwards.
I know what it’s like to stay up through the night watching your child sleep, making sure they are still breathing.
I know what it is like to celebrate the littlest things, because they are some of the biggest accomplishments.
I know what it’s like praying for healing sitting in a hospital room, when there seems to be no end in sight.
Life isn’t fair and sometimes it’s too much, but you keep going because you don’t have a choice.