My Whole Body Hurts – Mild Ehlers-Danlos

Some time ago we started collecting words and phrases kids use to talk about how Ehlers-Danlos makes their bodies feel.

This week I had another comment from a mother in the US.  In this Michele talks about her experiences at school and how Sure Steps has helped.

As I have never heard of Sure Steps I decided to include her comment here as well as a link to more information about Sure Steps.

I’d be pleased to hear from anyone else who has found useful equipment and strategies for keeping kids with chronic pain issues happy at school.

“Our adopted child from foster care has EDS (mild) and described the pain as: “My whole body hurts!”  “It feels like little needles all here (indicates area).”

We had great difficulty with the local public school in a suburb of Burlington County, NJ and pulled him out for his own safety.  The staff was generally understanding, but the children were allowed to taunt him for being different and push him over all the time.

Since Billy looks and can usually act normal, during a pain day, he was scene as “generally disruptive” and “refusing to do his work” and causing issues by “being a pest.” It took 4 months to get the 504 to all the teachers, and it was too late for his self-esteem.  The teacher’s were surprised because “he looks normal – not like some disabled kid.”

We were told that while in the public school he rolled around on the floor in pain, and we were asked “what is his problem?”  When asked if he was sent to the nurse, we were told “this is behavioral…are you first time parents?”  Even though his diagnosis was confirmed by a Major Children’s Hospital and he goes for both PT and OT privately through a distinctive local children’s rehab hospital, we were told he was “being a big baby” by an administrator.  When children pushed him down on the playground (he falls easily do to flat feet and lax ankles), we were told “he’ll be fine, he’ll just get used to it.  This is your first child, isn’t?”

Three x-rays later (due to bullying) and Sure Steps for his ankles (all done privately becaue the public school said he didn’t qualify for an IEP), kids still try to push him and he now does not fall and have more pain follow.  Guess he didn’t have to get used to it, huh?

We put him in a private school after the comments regarding the 504, and there is MUCH MORE communication and supervision regarding his issues then ever.  He still has moments, and we are getting better at having a shy 6 year old discuss pain, but we note it is usually 1 day before a major storm that his pain increases.  The Sure Steps have been such a GREAT motivator for him, “Mom, they can’t push me over and hurt me now!”