A Few Thoughts From Sarah Kate

May 1, 2013 · 24 comments

in The Girl & Cerebral Palsy

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When I agreed last week to let Sarah Kate write a guest post for me, it hadn’t occurred to me that she hasn’t been taught any creative writing in school yet. ;) Many of you were enthusiastic about reading what she had to say, so I’m sticking by my original decision to post her thoughts today. Thankfully, you all also told me some things you’d like to know from her, so she used that as her guide to write the following post. Here it is, completely unedited, (except for the headers added by me and the italicized notes).

On Staring

Most of the time at school kids that I don’t know just stare as I walk by. When I first noticed this I was surprised and I felt uncomfortable. If someone feels uncomfortable just pretend like I’m a normal person like I do when people stare at me, I pretend they aren’t staring at me.

On Braces

My braces have foam on the inside. They have Tweety Birds on them. Because of the foam they make me really swetty after school. They help me keep my legs straighter. I don’t have to sleep in them. It is a little uncomfortable when I wear them. I don’t like wearing my braces to school because people pound me with questions that are hard to explain, and stare at me. I wear pants to over my braces so people can’t see my braces.

On Other Kids

One time at elementary school our class passed by some of the kindergardeners. They started pointing at my braces, and whispering to each other. That day I felt really uncomfortable. I also feel uncomfortable when we pass through the 5th and 6th grade halls. I’m afraid they will laugh at me and make fun of my braces and my form. It makes me scared when I have to walk down their halls. I’m afraid they’ll laugh at me, and bully me.

On Night Splints

My AFOs help straighten my legs at night when I’m asleep. I don’t wear them every night though. I only wear them if I want to. Sometimes I don’t wear them because sometimes they are itchy. They wrap around my legs and have metal bars in them to keep them straight. I’m not sure what AFO stands for. I don’t really like wearing them because it’s hard to sleep comfortably. If I wear my AFOs at night I don’t have to wear them at school the day after.

Note: When Sarah Kate says AFOs, she doesn’t mean AFOs, she means night splints, and when she says “them” in the last sentence she means her braces. I didn’t realize she didn’t know the difference until she wrote this post, so I left it the way she wrote it. If you aren’t familiar with AFOs, that stands for ankle-foot orthotic (i.e., her braces).

On Friends

My friends take care of me, and make sure I don’t get hurt. One of my friends named Jerry helps me out a lot to make sure nothing happens to me. I’m really happy my friends care about me.

On Socks

My socks are sometimes really tall, others below my knee. Although really tall, in the summer and early spring they don’t make me hot. But they do make me sweat even though I’m not hot at all. I like wearing them to school because they are cute on me. I occasionaly get some comments from usually students from other classes besides mine.

On Blogging

I think writing a blog is a great way to express my feelings with others who don’t know about me as well as my family and friends. I also think writing a blog is good for my creative writing skills later in life.

Is there anything more  you’d like to know about any of these topics that she covered? I know there’s not a lot of detail here, but I hope it was enlightening just the same. :)

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Galit May 1, 2013 at 8:22 am

This is wonderful! Sorry that the other kids make you uncomfortable…. :-( When I was your age I was bullied because of my accent. Does your experience affect how you interact with other children who are “different” in other ways?

In a similar vein, do you see Nathan differently? Does he get stared at? How do you react?

Julie May 1, 2013 at 8:43 am

I love what you wrote Sarah Kate! I have a 10 year old daughter and I am going to let her read your guest post. I know she would love to read more posts from you and she will think it’s really cool that you are sharing your thoughts on a blog!

Jennifer May 1, 2013 at 8:54 am

Good job! It was really sweet to read what she had to say. It almost makes me cry to see her use the word uncomfortable so much, and to remember as a younger one how hard it was to care what other people think. In some ways, I know I still do as an adult, just not as much. I have a port wine stain birthmark covering the right side of my face and my eye, and I have lived with stares and questions from others my entire life. I know how that feels. For me, writing and music have always been my ways to express those feelings and release them.

K's Mama May 1, 2013 at 9:09 am

Great post, what a star! Looking forward to future blog posts from Sarah Kate!

Considerer May 1, 2013 at 9:43 am

Thanks for sharing your experiences Sarah Kate. I hope to read more from you. Your attitude seems very mature and thoughtful.

Wren May 1, 2013 at 10:38 am

This is a great first post, Sarah Kate! I hope in one of your next posts you share with us about your swimming and softball. Those are two sports I never did, and I’d love to know what you think about them!

Katie May 1, 2013 at 10:55 am

As I read along I read this with Sarah Kate’s voice in my head. It is like having a great conversation with her. Miss you Sarah Kate!

Sarah May 1, 2013 at 10:57 am

Well done Sarah Kate. Well done.

Ann O'Connell May 1, 2013 at 11:09 am

This is awesome. What a star, and a terrific writer!!

Ann-Marie May 1, 2013 at 11:21 am

It was great to read about you Sarah Kate! I know a lot about you and your brother from your Mom. It is nice to hear you tell your story and what your everyday life is like. I look forward to hearing more about you.

Madeline May 1, 2013 at 11:38 am

Sarah Kate,
Thank you for sharing your feelings with us! I am a mother of a 4-year-old with CP who wears braces and walks with a walker. You are an inspiration and I look forward to sharing your words with her. I hope she turns out as well-spoken and well-adjusted as you! Your parents must be so proud!
-Madeline
(Andi — thank you so much for this!)

Judi May 1, 2013 at 11:54 am

Thank You! This is so great to read! What a privilege to share the thoughts and experiences.

K May 1, 2013 at 1:01 pm

AWESOME. Sarah Kate, this is amazing. YOU are amazing. I am so excited that you are starting a blog!! I have the same type of CP as you, and mine is mild as well, so I can really relate. I blog about my CP too; I wish I started at your age, though! I can’t wait to read more of your words. Thank you, thank you, thank you!! You go girl. :-)

Starrlife May 1, 2013 at 7:11 pm

Sarah Kate, thanks for sharing, that takes a lot of courage to speak from your heart about who you are! Looking forward to more!

Steph May 1, 2013 at 7:18 pm

Sarah Katie,
Your words are beautiful and puts a tear in my eye. I do not have disability, but I do have freckles LOTS and LOTS and LOTS of them. People stare at me all the time (even grown-ups). When I catch them staring I just smile at them. :)

Dawn May 2, 2013 at 8:22 am

Hey, SK. Miss Dawn here. I hate that kids staring at you makes you uncomfortable, but you did say it was kids who didn’t know you yet. I think the kids that know you could care less about your braces. They are too busy noticing how AWESOME you are! I also KNOW that you have some really good friends (Ben, Marshall, Jerry, your swim team girls, your softball friends) that would NEVER allow you to be bullied by anyone.

When people stare, you just keep your head high and smile at them. Be proud of who you are.
You are an amazing, beautiful, intelligent, athletic and funny girl that I am proud to call my friend and I know Ben is proud to call his friend, too.

Can’t wait to see more from you on the blog! Happy writing!

Jenna@CallHerHappy May 2, 2013 at 12:37 pm

Very brave to put all of your thoughts out there, Sarah Kate! Thank you for sharing :)

Robin Ennis May 3, 2013 at 12:18 pm

Sarah Kate, that was awesome!! You are never scared to try something new, and I admire that a lot. I learn a lot from you, and I hope you will write again.

Ellen S. May 3, 2013 at 4:41 pm

Hi, Sarah Kate. This was really wonderful to read. My son, Max, is 10 and he has CP. He also wears AFOs (with planes and trains on them!) and night splints (purple!). He gets stares too, and I realize it’s how people process anything that looks different (as in, his braces, or because he drools a bit). That doesn’t mean it’s right (sometimes, I think it’s very rude!) but I’ve learned it doesn’t mean that they think something’s wrong—they’re trying to figure out what’s up. Someone once said that it’s possible people stare because Max is so cute, which I’d like to think is true! You are a beautiful girl, so that may be the case as well. And really smart, too. I hope to read more of your writing!

Jo Lynn May 4, 2013 at 12:01 am

Thank you so much Sarah Kate for sharing! I really appreciate you opening up and expressing these things to us all. I am definitely looking forward to reading more from you.

Uncle T May 4, 2013 at 11:29 am

Great post SK, thanks for getting started. I will be looking for more. I hope to see you soon. Maybe we can go fishing again.
Love,
Uncle Tim

Mrs. Emily May 5, 2013 at 3:12 pm

Hey sweet girl,
It’s Mrs. Emily from therapy. I love reading about your life. You are such a smart and beautiful young lady. I love all your topics and expressing your feelings. You aren’t the only one whose feet sweat when its hot outside… :) Everyone has their difficulties in life but don’t you ever let someone bring you down. We all love you at therapy!! CCD class isn’t the same without your huge smile. Miss you sweetie!
Love,
Mrs. Emily

Cara May 7, 2013 at 11:46 am

I’d like to know if she thinks it would be a good thing for her to meet other kids with CP or older “kids” like me that can give her advice. (Can I still define myself as a kid at almost 21 years old???? Pleaaaaaase??? LOL)

AZ May 7, 2013 at 5:58 pm

Hay sarah kate

good job on your first post I am 21 with CP

My question is What are your thoughts on sports do you want to keep playing them on a team as you get older? Would u feel comfortable playing in the Special Olympics?

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