Keeping a Promise

By Gerri Zatlow

The Voice, Summer 2015

I lost my mother, best friend and partner in crime in June of 2013.  She left me as the eternal protector to my autistic brother Douglas.  There isn’t a day that goes by when I do not feel her loss substantially.  When my brother comes home to visit me each and every weekend, I sometimes miss her more, as the amusing buffer between myself and Douglas’ autism (NOT Douglas the person), is no longer there to make peace, or joke about his strange ways.

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What Tracy Taught Us

Sibling’s Perspective
The Voice, Spring 2015
By Sharon (sister) and Shawn Humberson (niece)

Sharon’s Story

I was 25 years old and the mother of three very active little girls (including Shawn, age 7 at the time) when my parents came to me and asked if I would be embarrassed having a sibling at my age. I was thrilled for them. Although my dad had two grown daughters, my step-mother had never had a child. At 35 years old she had given up and was content to be the best grandmother there ever was to my children. The birth was difficult and my new sister, Tracy, was in the incubator for some time; and didn’t come home from the hospital until she was about 2 weeks old. We knew there were problems but had no idea to what extent.

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Shawn's Story

One might say I’ve been an advocate since I was seven years old; when my aunt, Tracy, was born.  Tracy stole our hearts from the start. I was too young to truly realize the implications of cerebral palsy and profound mental retardation.  I just knew she was a sweet, little baby, my aunt.

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My Sister Jean

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   By Colleen Lutkevich, Executive Director, Massachusetts Coalition of Families and Advocates (COFAR.org)

    Published in The Voice, Summer 2014

   My mother was nine months pregnant with me when my older sister, Jean, six years old, was placed at what was then called the Wrentham State School.  My other sister was twelve, and my younger sister was born two years after me. Read full article
 

Issues Facing Siblings of Children with Autism Spectrum Disorders: The Balancing Act in Family Life

National Autism Network

Host: Dr. Robert Naseef

Parents often wonder and worry about how raising a child with autism affects their other children. In this webinar, psychologist Dr. Robert Naseef helps parents explore their own sibling relationships to understand the impact of their child's special needs has on their more 'typical' brothers and sisters. Listen to pick up strategies for meeting everyone's needs.

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About Matt, My Twin Brother

By Jennifer Viox
The Voice, Summer 2013

My name is Jennifer Viox. I am 37 years old and my twin, Matthew Capps, is a resident at Mount Aloysius (“Mt. Al”) in New Lexington, Ohio.

My brother Matt has been living at Mt. Al for nearly twenty years. Without the help of the wonderful, fully trained personnel of places like Mt. Al, my family would have nowhere to turn to for help with my brother. Being severely handicapped is a challenge on its own; trying to live outside his Mt. Al home would not be beneficial to him.

When I was a little girl, I remember how hard it was on my parents. Both were working full-time and raising their three kids, plus the challenges that come with having a child with multiple disabilities.  Matthew has severe intellectual disabilities (“mental retardation”), Autism, ADHD, cerebral palsy, and behavioral issues.

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"My Life as an Advocate"

by David Hart, VOR Board Member
The Voice * Winter 2012

   I know when my parents became advocates for individuals with ID/DD.  It was March 4, 1964, when their son, Christopher, my older brother was born.  My father led the charge, and my mother was the support needed at home.  I do not believe my father realized the depth to which his advocacy would take him, nor did he realize the impact his advocacy would have on me.

   My brother suffered from Hydrocephalus, which simply is fluid on the brain that does not drain naturally, causing severe headaches and brain damage. At his best, my brother’s cogitative level was no more that 12-18 months with a rudimentary vocabulary of about 20 words.  Eventually, due to many physical complications of this condition, Christopher was wheelchair bound from about twelve years old.

   For this article, I have been asked to offer a sibling’s perspective and share when and, more importantly, why I became an advocate - first for my brother and then for all individuals with ID/DD.  The why is simple. I firmly believe that as human beings it is our duty to help those that are less fortunate than us.  The when? That is a little more difficult to answer, although, as with most people who are passionate advocates, I did have an “AH HA” moment.

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