By Maureen Durkan, Anne Pichette and Mary Durkan
The Voice * Winter 2011
Our “little sister” Sharon is the youngest of seven children, four girls and three boys. She is the light of our lives and has taught us about love, compassion and giving to others. She does not know what hate is; she is innocent, sweet and kind.
Our parents wanted to keep Sharon at home, but she took up most all of their time and they had six other children to raise. Sharon needed 24/7 supervision; understandably, her high care needs were stressing the family out. We suffered from sleep deprivation in those days.
Sharon had one out-of-home placement before she went to live at Fircrest ICF/MR (“Residential Habilitation Center”(RHC)), where she has been since 1974.
None of us will ever forget what a challenge it is to care for our sister who is profoundly developmentally disabled. We don’t want other individuals, or families to suffer without proper services for their loved ones. Our state RHCs are a godsend. We need them as part of our continuum of care for all citizens with developmental disabilities to be able to access. We advocate for these services all the time with VOR, Friends of Fircrest and our state organization ActionDD.
Now it is our turn. Read More.
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.
By Saskia D.
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.
By Mary Kay Cowen
VOR Board Member
VOR State Coordinator
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.
By Hugo Dwyer
New York State Coordinator
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.
By Bill Ryerson
VOR Board Member
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.