Contributed by David Fettgather
I am 24 years old. I WANT TO GO HOME TO MY “DADDY’S HOUSE”. I was placed in a really bad care home in 2005 by Alta Regional Center-the Boss now is Phil Bonnet (he has been mean to my dad and won’t let me go Home). The Boss works with my Boss, a Conservator. It was Kay and is now Betty Wright. She will not let me go to my Daddy’s house either. She has a really bad lawyer, Todd Robie who is mean to my Dad and files Court papers so I have to stay in the care home I don’t like. Six years is a long time. I am homesick and sick. Please help me and my family and my friends and my Dad-he writes for me because I can’t; he speaks for me because no one else knows how to listen. Join my Circle of support and help me come home, David.
Contributed by Dr. Robert Fettgather
On November 10, 1986, David Fettgather was born, frail of body, but strong in spirit. And with Down Syndrome. There were grave health concerns, painful surgeries he could not begin to understand, and long recovery periods.
But his body got stronger….and so did his spirit. At home, school and in our community for 17 years, David was a joy and a challenge as he carried so many of us to the very limits of patience, with a clever and mischievous sense of humor!
Thanks to so many skilled helpers, communication, social and even computer abilities blossomed with each November IEP: precious gifts. Those early birthdays were so overwhelming that David cried out and threw himself head first….into his own cake! As usual be got the hang of it, and “happy birthday” and “candles-cake” became vocabulary mainstays. He was a carpe diem boy!
Thanksgiving became his most beloved holiday, for David knows better than most the deepest meaning of “feast”. He may have invented “mindful eating”! And this prankster would, in flawless rhythm, move from fork to mouth…to smearing the sleeve to the lucky diner to his right. He would resume eating, and show no hint of a smile at the mess.
David has a dry sense of humor to compliment his slapstick antics. Also, David’s paternal grandma’s birthday came on the 12th, just two days after his own. All of his grandparents were wonderful. I took special delight watching him with my own mom who was a loving presence even as dementia began to overtake her.
Finally, a woman who had shown consummate love and tolerance her whole life, became cranky and easily upset by David, who did not understand the changes in “Amah”. It was a long goodbye for her, and David was blessed in the end at just being with her quiet presence- not knowing of the agony she had suffered and her coming death. Actually, it was a foreshadowing.
You see, the genetics of Down Syndrome mean early onset dementia for David. Since 2005 he has languished in board and care. Those years ought to have been like the first 17, spirited, curious, always learning, always challenging us.
But, instead those years have been lost. The disability industry wastes no time with spirit (“behavior problem”). Years of failed school and residential care (translate as no meaningful stimulation) has broken a once fully alive spirit.
Guardian Wright even warned not to “overstimulate” David who has starved for the rich stimulation he once knew. And so as David’s birthday comes, I celebrate and mourn. David’s once great spirit flickers for a moment now and then.
With Thanksgiving I remember the blessing he is, as I despair over where has been the last 7 years….and where he is going. His fate remains locked in the hands of Guardian Wright and the State’s Alta Regional Center and he is ordered to custodial care, cleaned and fed, far from Home.
His papers (IPP) are lies, but they are “in order”. He is easy to manage now, and can be comfortably ignored by residential and day program staff. He is a shadow of what he once was, and in the not too distant future, dementia will slowly, insidiously take him.
Still, November is so sweet. I love you, David.