Speaking out for People with
 Intellectual and Developmental Disabilities

Sibling's Voice


Thoughts on a life with Jordy

By Carly Engels Johnston
The Voice* Winter 2011

Every parent believes their children are special. Whether they are exceptionally cute, smart, funny, talented in something like music or math, every parent strives to be proud of their children for their accomplishments and their character.

However, what do you do when your child is not any of these things? What do you say about a child who is not capable of achieving anything in life and whose biggest success is merely continuing to exist?

This is what my family has faced. Read More.

My Sister Kathy

By Saskia D.
July 2011

I’d like you to meet my sister, Kathy. Here she is with a housemate and Pickles, the dog in their living room at Fircrest, enjoying a game of “hat”.  It used to be that hats and rides were her favorite things in the world, followed closely by treats.  Recently, we have had the pleasure of adding dogs to that list. 

Fircrest has been Kathy’s home for 48 years. As one of Washington State’s Residential Habilitation Centers (RHCs),   Fircrest has separate licensing as an ICF/MR and a nursing facility. With cerebral palsy, mental age of about 2.5 years, bipolar disease, epilepsy and osteopenia, Kathy is best served in Fircrest’s nursing facility. Licensing of Washington’s RHCs varies: ICF/MR, NF, or dual. They are incredible resources.

Considering the road that Kathy and I have traveled together to where she is now, at Fircrest, I am thankful every day for all of her compassionate care and the friendships she has developed at her home.

My Brother Tommy

By Mary Kay Cowen
VOR Board Member
VOR State Coordinator
Tommy's Sister
 
My brother, Thomas Waldo (Tommy) has lived at the North Lake Supports and Services Center in Hammond, Louisiana for 45 years. He is profoundly mentally retarded, with an I.Q. of 8 months and motor skills of 18 months. He is very mobile and loves to be outside. North Lake provides the sanctuary he requires to allow all the freedom he seeks under the watchful and loving eyes of his “other family” – the direct care staff . . .
My siblings have thanked me for keeping them informed about what’s going on with Tommy and also politically. Two live in Texas and one in Florida, but there are areas they have been able to get involved – even if it is in small ways.

My Brother Tom

By Hugo Dwyer
New York State Coordinator
Tom's brother

My brother, Tom Dwyer, turns 54 years old this November. He is profoundly retarded, autistic, and bi-polar. He has physical problems, including early stages of Parkinson’s disease and a loss of vision through a detached retina and cataracts. Tom tends to swallow his food without chewing, so all of his food must be ground or pureed so he won’t choke on it. He doesn’t speak, and cannot brush his teeth or go to the toilet by himself. Tom requires one-on-one care 24/7.

Read More!

My Advocacy Legacy

By Bill Ryerson
VOR Board Member
Joyce’s brother

My sister, Joyce, who will be 57 this month, has the mind of a 2 to 2 1/2 year old child.  She can’t speak but does make numerous sounds that sometimes express her mood.  She is currently in a community home run by Search Development in the metropolitan Chicago area.  She was previously in the state operated Anne M. Kiley Developmental Center in Waukegan, Illinois.

My brother, Wayne, and I became legal guardians of Joyce in the summer of 2002 when our father, Warren, died (Violet, our mother, had passed away two summers earlier).  I am the “baby” of the family and grew up realizing, of course, that Joyce was mentally retarded but, to me, she was just my sister albeit different.  When we became the legal guardians, that perspective completely changed.  All of a sudden, Wayne and I became the responsible ones – we had to now make all the decisions on Joyce’s placement, care, etc.  Watching out for Joyce was no longer our parents’ “job” but ours.

Read More!