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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Sibling Caregivers Find Responsibilities A Struggle

Disability Scoop * December 5, 2012

About half of adult siblings of those with developmental disabilities either are or plan to be the primary caregiver for their brother or sister, but many are unprepared for the responsibility, a new survey finds.

The national poll released Wednesday indicates that among adult siblings of those with a disability, 23 percent are currently serving as primary caregivers while 1 in 3 expect to take on that role in the future. And many are finding the experience to be daunting, fraught with emotional and financial challenges and little support.

The survey conducted by the market research firm Ipsos on behalf of Easter Seals solicited feedback from 351 brothers and sisters of people with developmental disabilities from across the country. A control group of nearly 1,400 adults with typically developing siblings was also polled.

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My Sister Lauren

By Linda Lotzi, VOR Board Member
The Voice, Summer 2012
 

     In 1998, I became the primary contact and the court appointed personal guardian of my sister, Lauren. Lauren’s home for the last 41 years has been White Haven Center (WHC), an Intermediate Care Facility (ICF/MR) in Pennsylvania.  Our parents wished for Lauren to reside at White Haven as long as she is safe and happy. 

      Since I was young, I have experienced what it is like to have a sister with severe profound intellectual disabilities. I felt the struggles my parents had with Lauren when we were young. I remember many times when Lauren would fall to the floor and have a seizure.  I was only five years old.  I remember how hard it was on our family when Lauren was brought to White Haven Center to live.  I was very sad and did not understand. Back then there were no supports in place to help family’s keep their loved one home.  Society dictated then that facilities were the best way to support a family with a child that has disabilities. Today, forty years later, society is still trying to dictate what is best for my sister and her friends.

 
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