We are now a couple of weeks into school and my youngest daughter asked me to talk to her 1st grade class about Ehlers-Danlos Syndrome (EDS). She had already been ridiculed for needing special seating and some of the braces she has to wear to school from time to time.
Of course, I agreed to come and and I set up a time to come into the classroom with the teacher. I have been a teacher for years and thought nothing of talking to a group of 1st graders. The last teaching assignment I had was teaching children in kindergarten through fourth grade.
I began the talk with asking if the kids had ever heard of EDS. Most of the kids said that they had heard it from my daughter but they did not know what it was. I then realized I had no idea how to explain such a complicated medical condition to 6 year olds! Most doctors do not know about EDS! How to you explain the effects of the lack of collagen to first graders?
I admit, I panicked. My daughter saw that I was struggling and quickly came up next to me in the front of the room. She basically took over the talk. She showed the kids how she could hyperextend her joints at which point all of the kids tried to twist themselves into a knot. I was going down in flames!
I took a couple of the braces out of my bag and explained that sometimes my daughter needed to wear these contraptions to help her stay out of pain. One of the kids was in her kindergarten class and said that he knew about the neck brace because she wore it last year. He also explained that she was in a bad mood all day when she wore it. Out of the mouth of babes...
I knew I was in real trouble when one kid asked if her head would fall off and could she die from it. Before I could answer, my daughter explained that her head was finally attached to her body and the doctors saved her life putting in mental plates and screws to keep it on. This is true of course, but it sounded much worst than it really was! She went on to explain that my head was not attached to my body and she wanted me to show my scar. I said no. My C1-C2 scar is not for the faint of heart. She said that I had just had another surgery on my neck and she pulled down the collar of my blouse and showed off the scar like Vanna White!
At this point, most of the kids were still trying to contort themselves when a little boy explained, "Its okay, my daddy has a plate in his head too!"
I wanted to finish on a good note so I said that there were a couple things that they needed to know about EDS. First, they could not catch it like a cold. Everyone ignored this one because they were still trying to to what my daughter did. Second, they needed to be extra careful not to grab, pull or twist my daughter in any way. My daughter quickly pointed out the girl that had twisted her thumb and dislocated it on the first day of school. She kept pointing at her, saying. "I told you not to do that! See my mom agrees with me!" And third, if they see her fall, tell a teacher.
I quickly gathered my things and left ASAP. By this time, I had a pounding headache and was sure that I had made things worse instead of better. The next day my older daughter asked if I would talk to her class too! I just hope 6th graders are nicer!
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