One of the roles we play as teachers is sometimes to point out resources and be a guide to parents and caregivers, other times it is to just listen and still others it is to create positive relationships where there are negative expectations. Often times it is our biggest task just not to judge, parents of our students frequently have plenty of that in their lives with out us adding to it.
Having just hung up the phone I am reflective of what I have just learned about one of my former student's from her mother. I had been warned that this mother was, "difficult" before I ever met her. Having literally taught classes about working with difficult parents I set about trying to be a supportive resource and build trust. Frequently I would spend time talking at length about possible educational interventions, getting names and phone numbers of community resources and sharing techniques to use at home with this parent. The more we worked towards creating a positive, proactive parent/teacher relationship the more I understood that this parent was frustrated by being both told she should do more about a variety of issues (from feeding to behavior) and yet not knowing what to do. We came to work well with each other.
During that time it was noticed my student/her daughter was losing her vision. She was fairly new to me as a student and had goals to do things like read sight words, yet she could not seem to see even very large white on black picture symbols. Additionally communication was a huge issue, as pointing to symbols was no longer a viable option and exploration of AAC systems rolled to a halt. Eventually a vision evaluation found both cataracts and optic nerve disease. Her mother and I discussed these findings at length and it was a learning moment for both of us, she learned about the optic nerve and I learned how vital it is to explain things when no one else has, as understanding can bring action. That conversation lead to modifications both at school and at home to meet her vision needs. I did some research and shared some phone numbers her mother made some phone calls to our state's Federation for Children with Special Needs and from there to a Birth Defects Clinic and finally (back) to Children's Hospital, in hopes of better understanding what what happening with her daughter.
At age fifteen after having been misdiagnosed with everything from cerebral palsy to hepatitis to Usher Syndrome this young lady was diagnosed with Cockayne Syndrome. Cockayne Syndrome is an extremely rare disorder and upon reading the diagnostic features I knew immediately that this young lady finally had a proper diagnosis (although genetic testing certainly seals the deal). Her mother was excited and relieved to share this with me, although with sadness told me she did not want to talk at all about the long term implications. She told me how relieved she was to know that things people had implied were her fault including nutritional issues and skill loss were genetic. She spoke of having attended the recent conference and everything she learned there, from anti-oxidants as part of treatment to vision interventions. She was excited to be about to take a course on deafblind communication.
We hadn't talked in over a year it and was wonderful to hear of all the positive happening in the family. At the end of the conversation there was a thank you for sowing the seeds of hope with kindness. It left me thinking what a vital part of our job sowing the seeds of hope can be.
I would like to thank the mother in this story for permission to share it on my blog and permission to share her daughter's photo.