A Mom, A Son, And Cerebral Palsy

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.

10 Facts about Cerebral Palsy

1. Cerebral Palsy (CP) is a disorder that affects a person’s movement, muscle tone, and posture.
2. 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
3. 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
4. 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.
5. There is no cure for CP, but it does not get worse over time.
6. There are four main types of CP:
   1. Spastic CP: causes tight muscles
   2. Dyskinetic CP: causes muscle tone to change throughout the day and either become too tight or too loose
   3. Ataxic CP: causes trouble with balance and coordination
   4.   Mixed CP: is a combination of any of the above type
7. CP is not contagious.
8. People with CP can also experience:
   • Gastrointestinal issues
   • Respiratory issues
   • Vision impairment
   • Hearing impairment
   • Epilepsy/ seizures
   • Learning difficulties
   • Intellectual difficulties
   • Speech impairment
9. CP is not hereditary or life threatening.
10. 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.

You are not alone. You never have to go through this alone.