Talking to young children about Caroline

The following post is written by my dear friend Sherry. She is one of the most supportive and generous people I know. I also look up to her as a mother. She always knows the right things to say, no matter how sensitive or difficult the issue. I especially love the way she talks to her children about Caroline. I recognize that it's not easy to talk about Rett Syndrome to young children, but Sherry does it with such honesty and kindness.

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Written by Sherry

My kids, JJ and Daisy, have known Caroline practically since she was born. My son always says, “Caroline is so pretty and sweet. “ He has such good taste.

We get-together with Caroline’s family regularly.  At the museum, puppet theatre or one of our homes, we cherish these playdates.

Recently, Marta asked me to write a blog post on how to talk to young children about Caroline.  I felt unsure at first.  What do I know that can be helpful to others? I am still learning, too.  I felt honored at her request though, and embraced the opportunity to do something for Marta.

It’s amazing how perceptive toddlers can be about the world.  They are curious and love to explore and engage with their friends.  Questions about Caroline have popped up in house, even at 3 years old! I imagine my kids’ questions will only increase as their relationship with Caroline grows.  

While I don’t claim to have all the right answers, here are a few nuggets from our experiences I can share with you.

1. Always respond to your young children’s questions directly, and perhaps with a question.  This helps kids make sense of their world. Here’s a recent conversation I had with my son, JJ (3 ½).

JJ:   Is Caroline a baby?

Me: Caroline is the same age as your sister, Daisy. Is Caroline a baby?

JJ: No, she’s a little girl like Daisy.

2. Age-appropriate honesty. It’s hard to know how much information to give, but in our conversation below, I didn’t think JJ was ready for more.  Instead, I wanted to focus on how Caroline expresses herself.

JJ: Does Caroline not talk because she’s shy?

Me: No, Caroline loves to laugh, smile, and hang out with her friends.

3.  Young kids want to explore and learn about Caroline’s world. That means learning about and touching (with close supervision) Caroline’s special equipment that helps her get things done. Her hand-made arm brace and little lamb shoe inserts were of special interest during our last visit.  Marta patiently let my kids hold the foot inserts and ask questions. 

4. Finally, speaking from the heart will take you far.  Try to answer questions in a way that strengthens a connection between young children, rather than sets them apart.  It’s pretty easy to talk about Caroline, JJ and Daisy’s similar interests: hearing stories, seeing puppet shows, drinking smoothies, listening to live music, or simply holding hands and rocking back and forth on the bed together.

Most young children share a love for music. I hope one of our next excursions with Caroline will be to Jammin Java to hear some Tot Rock.

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Written by Marta

I value the way Sherry encourages JJ and Daisy to find things in common with Caroline to show that they are more alike than different. I often watch in awe as she takes various opportunities to demystify Caroline's condition. JJ and Daisy are incredibly sweet to Caroline. They approach spending time with her as they would any other child her age. Caroline LOVES them (she is all smiles and giggles around them!).

I greatly appreciate Sherry's willingness to share her experience. It meant a lot to me. I hope others find it helpful. 

The International Rett Syndrome Foundation has a wonderful children's coloring book explaining Rett Syndrome. Please click here to download the short book.

Below are some pictures of Caroline's friendship with JJ and Daisy.

JJ meeting Caroline for the first time (January 2010). Daisy is in the picture too!

Caroline, Daisy, and JJ watching a video (January 2011)

Caroline and Daisy smiling at each other (May 2011). This picture was taken  a year ago when Caroline started quickly losing skills. She was diagnosed with Rett Syndrome a couple of weeks later.