Tuesday, December 25, 2012

Christmas Wishes

Special Education and Student Services Newsletter for December 21, 2012

About 18 months ago my step-nephew Collin Cushman was diagnosed with Krabbe Disease which is a form of Leukodystrophy.  Collin is the only child of my step-sister Judy and her husband Kevin.  Krabbe Disease is a rare and often fatal degenerative disorder that affects the myelin sheath of the nervous system.  Infants with Krabbe disease are normal at birth. Symptoms begin between the ages of 3 and 6 months with irritability, fevers, limb stiffness, seizures, feeding difficulties, vomiting, and slowing of mental and motor development. In the first stages of the disease, doctors often mistake the symptoms for those of cerebral palsy. Other symptoms include muscle weakness, spasticity, deafness, optic atrophy, optic nerve enlargement, blindness, paralysis, and difficulty when swallowing.  

This past Wednesday December 19 - Collin turned two years of age which is the life expectancy for a child with this disorder. Collin's parents have tremendous support from their congregation, friends, and family through this process. Tonight there will be a benefit called "A Collin Christmas" where over 200 people are scheduled to be in attendance to celebrate his life and provide support for Collin.  

Collin and other children with disabilities never ask to have their physical, genetic, developmental, learning, emotional, cognitive, autism, or other disabilities.  Each day we work on teaching students how to read, how to make good choices, learn behavioral skills, support their developmental milestones, and how to cope with their autism.  We are continually trying to learn about them, show them empathy, and give them the supports they need.  

Our students are fortunate to have our staff who care about children and have chosen to come from all walks of life to support them.  Our special education staff have diverse backgrounds - some started as social studies teachers, have an art degree, drive from Wausau, started as paraprofessionals, worked in day cares, had careers in nursing homes, worked in private business, used to do peace corp, were stay at home moms, taught physical education, chosen to spend all their professional careers in special education, used to be a special education student, added on special education license, and came from other parts of the state to live and work in our community. 

My Christmas wish for Collin is that he continues to be the strongest and bravest child I know.  He must be in order to cope with his disorder. While his life expectancy is thought to be short - I also wish he continues to defy all the odds.  My Christmas wish for all of our students with disabilities is they continue to defy their own odds and strive like no one thinks possible. I also wish they have each of you continuing to provide them supports.

My Christmas wish for all of you is to have a very merry and blessed Christmas season filled with much love, peace, and joy with your family and friends.  You are each Christmas blessings for all of your students and the school district.      


Merry Christmas,

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