By Jane Grillo

Everyone likes to hear a story with a happy ending, especially when one is doing the work of disability advocacy.  I have found that in my own life the best medicine to get me out of my head, or out from under the bed, for that matter, is to do something for someone else. To try to help people’s lives change for the better. I found that I do not have to go far to find someone who seems to have bigger troubles than my own.

Let me share this story about a young lady who returned to school in October 2014 after being out since last December. Her struggles with onset of medical issues related to her Mitochondrial Disorder;  led her family to go to many meetings at her school trying a variety of ideas,  beginning with half-day schedules, then intermittent hospital homebound and finally… homeschool.

This remarkable 10-year-old girl started her journey in 2012 when her symptoms of fatigue led her pediatrician to diagnose “Mono.”  Then she started to lose her hearing. Then she needed glasses.  Her fatigue was getting worse. She would sleep for hours, sometimes 14 straight. Her mother gently rousing her to make sure she was OK, and then letting her go back to sleep. Mom, on a constant diet of worry and panic, got no sleep most nights. Then there were mood swings, loss of bladder control, hand tremors and a host of other symptoms.  She went to doctor after doctor.  She tells me she is being treated by 13 now.

Her little brother couldn’t understand why she was no longer able to play with him like she used to. Her older brother is trying to learn to cope with his friends at school who keep asking him “What’s wrong with your sister?”

Her mom tries to have the answers to questions like, “Why did this happen to me?” And, she is learning to navigate the systems of medical facilities and government agencies that she never heard of three years ago.

There were many days when her mom would come by my office and just need someone to sit quietly and let her talk about the things that she couldn’t say out loud in front of her children, or her family. Parent Mentors can do this because we know what those unspoken things are. We have spoken them ourselves in the moments when we are alone in our cars or in the shower.

The summer was rough, but certainly not as dark as some of the days have been.  There were more medical procedures, some with a new host of problems… but, it seemed like things were getting better. Mom started talking to me about her daughter returning to school.

By August, the talk was about meeting with the school and considering attempting a half-day schedule again.  We did meet with the school. The IEP team was wonderful, they were open to suggestions and my young friend made a poster of things that she is good at and things that are hard. The teachers reviewed the poster with interest and complimented her lavishly. A date for her first day to return to school was set.

We decided that in the week or so before she actually started school that giving this young lady an opportunity to transition back into school would be very important for her, and, for her fellow students. So, she made a power point about being a kid with “Mito”.  I was there to help with her presentation to the two classes. I was so impressed with the bravery she displayed standing up in front of two groups of students and speaking her truth about why she will only be in school half days, and how she gets tired sometimes, and how many doctors she goes to and… stuff that few kids have to deal with. This inspiring young lady was unknowingly providing me with a badly needed pep talk.

The students responded with kindness and enthusiasm. The fourth graders she was meeting said things like, “I’d like to be her friend.” One of her classmates showed her his hearing aids. They talked about their pets and why they like their class.

I witnessed the magic of self-determination theory in practice. It was a banner day.  We all three; mom, fourth grader-to-be and me floated out of the school with big grins on our faces.

Want to know more about self-determination skills in the school setting?  The State Personnel Development Grant has a program that trains schools to do self-led IEPs (scroll down for a link to view videos).

If you have any stories that you’d like to share on the parent mentor website,  send an email to info@parentmentors.org.