Friday, September 28, 2012

Letter to parents: My kid has cerebral palsy

This morning, Andy and I visited the first graders and talked about cerebral palsy. If you have been reading here, you know that I overheard a little girl talking about Nina, "She was born that way." I talked to her teacher and asked if we could come to class and talk to the kids, after all, it is only natural that they begin to notice differences.

Last Friday, I sent a letter to parents introducing my daughter with Down syndrome. I got a great response from that, so we planned on doing a little presentation on cerebral palsy and also sending a letter to parents talking about Nina and her CP.

Before sharing the letter, I want to thank you all for the thoughtful comments you leave here, and for helping me out. I love your ideas. Milena, thank you! Your idea with the apples was perfect!

Hello 1st grade parents,

Today we had the pleasure to come and spend some time with all the kids in first grade. Two of our daughters are in first grade too. Our daughter Nina has cerebral palsy, and this is the reason that brought us to the class. As Nina’s parents, we are thankful that your children have accepted Nina and embraced her as one of their peers. It is a joy to see children understand that a person is a person, a friend is a friend, and disability is only a small part of who they are. Cerebral palsy is not what defines Nina. Your kids get it, we are so proud of them! 

Nonetheless, first grade kids begin to notice differences and ask questions, it is a natural part of development. Today we spent some time talking about differences, disability, and specifically: cerebral palsy. 

We began our time reading the book, “Rolling Along: The Story of Taylor and His Wheelchair ,” by Jamee Riggio Heelan. Taylor has cerebral palsy too, and he talks about his braces, his walker, his stretches, and the independence he gained when he got his wheelchair. Although Nina only gets to use her wheelchair on long trips, we brought it along for the kids to see and we let a couple of the kids roll it back and forth to demonstrate.

We all practiced making our muscles “jump.” When muscles jump they get really tight, and it is hard to move! Nina had a spinal surgery called a rhizotomy, where the doctor cut half of her nerve roots. Now her muscles don’t jump so much and that is the reason Nina can walk independently! It is amazing what doctors can do to help tight muscles.

To help us understand even better, we spent some time with apples. Yes, with apples! There are red apples, stripped apples, yellow apples, and green apples. They look so different, but they are all…apples! Not only are apples different but you can also make so many different things from apples. You can drink apple juice, or apple soda. You can eat applesauce, apple rings, apple chips, or yummy apple pie! These are all so different too! You cannot drink apple pie, but you can drink apple juice. You cannot eat apple soda, but you can eat applesauce! Apples are amazing, but people are even more amazing!

Having cerebral palsy means that sometimes your muscles jump and get tight. Some things are quite a bit harder, like talking, walking, running, and even standing. But  we are ALL different. We all have different hair color, eye color, skin color, some of us are short, and some of us are tall. And these differences are what make us all special and unique. Like we told the kids, “There is only one you!”

If you have any questions, don’t hesitate to pull us to the side or contact us, We love to talk to other parents about special needs. Before we had children with disabilities, we knew little about what it was like to raise a child with special needs, and we wish someone had been available for us to ask questions. We are very open, and love to share about our experience.

About the book I read to the kids:

I just recently purchased Rolling Along: The Story of Taylor and His Wheelchair , and I loved it! It does a great job at explaining to kids what cerebral palsy is and how it affects the body. It also does a great job pointing out that Taylor is more alike his twin brother - who does not have CP - than he is different. And this book does an outstanding job at explaining how wheelchair can be so freeing! For any parent struggling to whether to get a wheelchair or an adaptive stroller, you need to read this book!

(The link for the book is an affiliate link. I am not sharing the book only because of that, this is really the best book on CP I have read and I absolutely LOVE it. Great resource, and I want to share great resources with you too! Still, it felt right to let you know)


  1. Excellent. I love how you invite people to ask so it's not so awkward seeming. I know I am curious to know about others, but if I am not in their shoes, I don't want to offend them with my seeming ignorance. The best way to overcome lack of knowledge is asking questions. Thanks! Mrs Y

  2. I'm so happy that you found my comment useful! Tank you for your kind words!
    I think both your letters to the parents of your daughters' classmates are so thoughtful, and I'm sure the parents appreciate them. And I'm pretty sure it increases the other childrens' awareness about how Nina and Nichole are more alike than different!

  3. I love it Ellen! We are bringing home an 8 year old little girl with CP in just a few weeks, and I am going to order the book you mentioned above (and steal your other ideas too, lol!). Thanks so much for sharing.


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