Monday, July 5, 2010

Sowing the Seeds

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.

6 comments:

  1. Such a great reminder of the importance of sowing those seeds. And of expressing the gratitude to those (such as you) who do sow those seeds of hope. :-)

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  2. What a post! I wish I could post like you. Nice gud job! :).

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  3. What an inspiring story. It is an important reminder to all teachers that we do so much more than teach...

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  4. I like that you point out taking time to explain something to a parent that most probably assume that parent knows. I frequently have to stop school administrators and ask what test/acronym/assessment/etc. they are talking about, what it means, how it's used, etc. And when I do, I'm just as frequently made to feel that I am being 'difficult'.

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  5. Multi Sensory Environments help in "Sowing the Seeds" of hope.

    Reason #1 for Attending The Conference on helping individuals with special needs: Fostering Dialogue between diverse disciplines in Multi Sensory Environments (MSE)

    Distinguished speakers will include David Dobbs, author of “the Orchid Hypothesis”, Jill Boyle Taylor, Ph.D., author of “A Stroke of Insight”; Ad Verheul, co-founder of the snoezelen concept and author of “Snoezelen Homemade”, Gillian Hotz, Ph.D., Miami Jackson Pediatric Brain Trauma Center and researcher of MSE and pediatric traumatic brain injury; Christopher Giza, M.D., University of UCLA and senior research around neurology, brain plasticity, and MSE; Jason Staal, Ph.D., a director of Beth Israel Medical Center’s Snoezelen Behavior Therapy Research program, professor of psychiatry at Albert Einstein College of Medicine, and a major research of multi sensory behavior therapy; Paul Pagliano, author of “Multisensory Environments”, “Using a Multisensory Environment” and Professor at James Cook University (Australia); Krista Mertens, Ph.D., a distinguished International professor in MSE and rehabilitation; Lesley Collier, Ph.D., an expert in using MSE with people with severe Dementia; Kim Ward, Ph.D. and expert in MSE and Autism; Linda Messbauer, a pioneer in MSE and professional MSE trainer; and many more exciting speakers. View the complete list of presenters and the full program at www.isna2010.org
    For more information on the conference: www.isna2010.org
    For more information on the Hidden Angel Foundation: www.cdhaf.org

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