Teaching New Things

Since Line was diagnosed in September, we have been trying to teach her to advocate for her herself.  We want her to be able to tell us when she is in pain, when she’s tired, when her wrist hurts, basically anything we need to know to help her get comfortable and to help her understand that she has limits (everyone does), and that living within those limits will make her life a little less painful than if she pushes through something that could potentially hurt her and make her have to go to the hospital or be on a restricted physical plan.

Part of her medical plan at school is to teach her to self advocate, and to educate other students and teachers about EDS, so that they can encourage her on her journey, and be aware of her limits, as well as to be able to help in an emergency.

Today, the school nurse and I went into Line’s class and talked to her class about what EDS looks like, right now, for Line.  They were awesome listeners!  Here’s what we did:

The school nurse opened up by asking the kids to look at their desk buddy and see what they looked like.  She then asked them about differences.  Some kids have glasses, some kids have brown hair, some kids have green eyes, some kids have dark skin, some kids are small.  She asked them if they thought those differences could tell them anything about their insides or who they were.  They said no.  She applauded them, and let them know that their differences didn’t make them who they were, and that some people have different insides than others.  She told them that they had a special friend in their class, a friend whose insides were different than theirs. She told them that Line has Ehlers-Danlos Syndrome, but because it’s a big name, we call it EDS. Then she showed them a picture, a very medical picture of an elbow.  These are first graders, and we knew that this picture wouldn’t be enough.  So here’s what our amazing nurse thought up for an example to show the kids…

She took two paint stirrers and some silly putty.  She told them to imagine that the paint stirrers were the two big bones in her arm.  She told them that the silly putty was connective tissue.  She showed how her arm moves because of the connective tissue, and with the silly putty in a ball, she told them that this is what the insides of their arm might look like.  Then, she pulled the silly putty apart a bit stretching it, and told them that this is what the inside of Line’s arm might look like.  That her connective tissue was very stretchy.  This was an amazingly clever idea and the kids really seemed to grasp what she was explaining.

Then I took two rubber bands.  One small rubber band, and one extra large rubber band.  I told them that the small rubber band was most people’s connective tissue, and that the extra large rubber band was like Line’s connective tissue – extra stretchy.

We talked about how EDS can not be cured.  Line can’t go to the doctor and get medicine for this, and it won’t ever go away.  But she can take medicine for the pain she’s in, and she can take care of herself by eating right, getting rest, and being careful not to push herself.  Since kids are usually thinking about what’s going to happen to them, we assured the kids that they can not catch EDS.  That EDS is the way that Line was made, and she has been that way since she was born.  We just learned the name of what it is and how we can better help her.  We told them that it’s not like a cold or the flu, they won’t get EDS from touching her or helping her.

We talked to them about how they could be good friends to her.  They can help her carry heavy things, they can listen to her when she tells them she is tired, and they could say, “That’s okay, you should rest.”, if she says she doesn’t want to play with them.  We told them how she might lean on them, but not because she is lazy, because she’s not comfortable or because she’s trying to hold herself up.  I told them that if they don’t like that, they can tell her, and she will find a different way to be comfortable.  Because Line can learn to take care of her needs without making anyone else uncomfortable.   We talked to them about if she got hurt, to leave her alone, or stay with her, but NOT to encourage her to get up.  We told them to bring help to her.  We asked them if they could help her by being her friend just like they were before, but now, to be gentle, to not pull on her arms when they play tag or push her down when they are running around.  They said they could.  Of course they could.  They are the sweetest kids ever.

We asked them why they thought we were talking to them about this.  They said because we wanted to teach them (smart kids), because they could help her, because she might need their help.  We asked them what they thought a person with EDS could do.  They had many answers.  Most of them involved low-risk play on the playground.  These kids were listening, and had great answers!  We told them that kids with EDS can laugh, play, skip, run, jump, sing, and dance, just like other kids.  They can be silly, be talkative or shy.  They can love and be a good friend, they can learn and do their school work too.  We wanted them to know that Line wants her friends to be just like they were yesterday, only today, they all know how to take care of each other a little better.

And because I’m a visual learner and I like to make take home things that go with lessons, I made some goodie bags for all the kids in Line’s class.  I got some clear bags, zebra print napkins, and candy.  I attached pink and black ribbon and tied on handwritten cards.  Here’s what they looked like:

zebra print napkins and tied with pink and black ribbon.

We also encouraged the kids to talk to their parents about EDS.  To ask them to go online and research it and talk about it.  We told them that if they have any questions to ask the nurse, Line’s mom, or the teacher and we would answer all of their questions the best we could.

The kids loved the goodie bags, Line loved the goodie bags and handing them out to her friends.  I think, for the first time, it is starting to sink in and register with her that she has EDS, and it is OK.

So, if you are looking for ideas to help teach your child’s class, or ways you can help your child learn to accept their diagnosis, I encourage you to think outside the box and be open to making it fun.  Because this whole deal isn’t.  It’s painful and stressful, it’s confusing and exhausting.  But it is what it is, and we zebras must learn to live with and share our experiences of this rare illness so that others can understand what it is.

Blessings on your journey.  If you are not an EDS Zebra and would like to know more about EDS, please the National EDS Foundation site.