The Grandma Chronicles

I guess you’d be crying too if you were only one day old, they took off your clothes and put on these stupid hats!  (I actually think the hats are adorable) but you get the point!

Addyson to Brooklyn: “they bent my ear and its starting to hurt”!

All I want for Christmas!

“I wonder if our Christmas stockings will always be bigger than we are”

We’ve got the bestest Mom & Dad

And Aunties

(And we can’t forget Grandma)

And best of all we’ve got each other:  sisters and friends for the rest of our lives

What’s not to smile about!

It was so nice to meet you all.  We will make sure that Grandma keeps you up to date on our antics.

Right now, we’re just gonna kick back and relax!

One Damn Tulip

 

It’s the only picture I got.

 

We had only arrived at Rozengaarten’s about 10 minutes prior.  We knew that most of the tulip fields were gone, but there were a few and Rozengaarten’s had a “show garden” that would be open until Mother’s Day.  My friends and I thought it would be a nice drive, about an hour an a half north of where we live to Washington State’s  Skagit Valley.  We would be able to get some nice pictures.  So here’s mine….One Damn Tulip.

My friends did get a few pictures before “the incident”.

This is Liz & Me in front of the windmill.  Liz is Dutch (from Toronto) so this seems very appropriate.  Ah, we look so happy. 

 

And here I am –  over on the right –  taking the one damn picture – just before the fall.

I wanted to get a picture of the windmill, so I stepped backward.  See the edging along the gravel path behind me? (I wish I had)

 

If you follow the trajectory of the white arrows, I stepped backwards and tripped over the first wooden edging then hit the second wooden edging (still going backwards, mind you) across the gravel path. I tried my hardest to catch myself and I think I almost did when I reached yet the third wooden edge and the other end of that little green island behind the funny looking tree.  I knew then that all was lost.  I fell straight down on my leg.

 

While lying on the ground not being able to sit up nor lay back, waiting for the ambulance to collect me, my two friends took pictures of tulips.

Only kidding….they weren’t taking pictures, they were holding me up from the back with their knees and hands for about 20 minutes til the ambulance arrived .  Thank God for good friends.  Thanks for everything you guys.

Thanks for going on this trip with me (pun intended).  I needed to tell you all this just so there is no misunderstanding…I didn’t just trip over a curb and fall down.  I think I was moving pretty fast (ask Lita & Liz…they’ll tell you) I’m not old, I’m not old, I’m not old. 

But, one thing I do have, is my sense of humor and one damn (pretty good) tulip picture (though the camera didn’t quite make it in tact).

P.S. And for those of you who don’t know how the story ended:  Surgery, 2 pins, one metal plate…Broken Femur….but life goes on…and I’ve got great Medical coverage.

The (Un)Forgotten: Willowbrook

   This is third in a series.
   The (Un)Forgotten Part 2
   The (Un)Forgotten Part 1

In researching for this story, I asked my mother what she remembered of the 1972 class action suit or perhaps what paperwork she and my father might have received.  I would have loved to have seen the original papers.  It was a very high profile case.  It altered the “institutionalization” of the mentally retarded forever.  Not only in the State of New York but all of the country and is also the model in many other parts of the world.

The court case took three years, from 1972 to 1975.  It represented 5,400 residents of Willowbrook and was filed in Federal court.  By the beginning of May, 1975, the “Willowbrook Consent Decree” was signed and designated “the Willowbrook class”, (meaning any person who was in residence as of March 17, 1972), as was my brother.  The judgment was 29 pages long and it pledged that New York State would reduce the population of Willowbrook from 5,400 to no more than 250 by 1987.  It further pledged to move those residents into the communities in the “least restrictive alternative possible”. 1 
For the first time, the rights of the mentally retarded were not just recognized, but enforced.

Since my brother was a resident of Willowbrook in 1972, my parents would have been the “parents of the 5,400 persons living there” which this court case represented.  When I recently asked her about the case (dad passed away in 1999) interestingly, my mother says she knows nothing of the law suit.  But, she told me she wrote a letter to Geraldo Rivera, who at the time was an unknown  reporter for WABC in New York, who broke the scandal and started the ball rolling on what has been called the “single largest venture in deinstitutionalization” (1).  She told him that in all the times she had been to visit the institution the building that HER son was in, was just fine!   She also went on to say that she and my father were also on a “parents committee” and never saw the neglect and abuse that was talked about.  She told me that she could send me the copy of the letter she wrote to Geraldo if I was interested.  She had it filed somewhere – but she didn’t know anything about the court case.  I find that….well, amazing.  And a bit disturbing.

Geraldo Rivera Reporting from Willowbrook, 1972

When Warren arrived in 1964, there were 6,000 “patients”, mentally retarded children, in a facility built to house 4,000.  The next year, 1965, Robert F. Kennedy visited the facility and was
horrified at what he saw.   He stated that “individuals in the overcrowded facility were living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”2

Overcrowding & understaffing is what compiled the problems of Willowbrook.  I, for one, do not believe that there was intentional abuse and neglect, although, in institutions such as these, and human nature being what it is, such things do happen.  If “intentional” neglect were to have a target I would hurl it at the New York State Department of Mental Hygiene.
A combination of budget cuts and more demand for placements coupled with indifference, led to most of Willowbrooks problems.  With a ratio of, some quote, 70:2 or 3 caregivers. I wonder how those “caregivers” could keep clothes on the backs of children with mental disabilities as severe as most of the residents, who would disrobe as fast as you could dress them.  How could they keep the feces and urine cleaned up when there were 70 other children to watch after?

NY Senator Robert F Kennedy

NYS Senator Robert Kennedy and a television crew visit Willowbrook State school in Staten Island NY.

He likens the conditions at Willowbrook to that of a “snake pit,” and states that the residents of these institutions were “denied access to education and are deprived of their civil liberties.” Later that same year, he addressed a joint session of the NYS Legislature on the “dehumanizing conditions” of the State’s institutions.
http://www.museumofdisability.org/newyork_timeline_1960s.asp

I have written to the State of New York for records on my brother’s years at Willowbrook but to date have not heard.  I recently emailed his Consumer Advisory Board Advocate to see if she knows the history and those years.  I hope to hear, however, it seems that a lot of those old “Willowbrook” files don’t want to be opened.

You see, it seems that there were many who had been transferred out of Willowbrook, without a trace.  There were those who died at Willowbrook and their families don’t know where their loved ones are buried.  In fact, I have read accounts of families that do not know if their relative is dead OR alive.

I found this heart wrenching story on SILive.com entitled “Looking For the Lost Souls Of Willowbrook”

 “In many cases, it has been left to siblings, grandchildren and cousins, many hearing the words Willowbrook State School for the first time, to search for pieces of their families they never knew were missing”
“They start calling agencies under the jurisdiction of the state Office of Mental Retardation and Development. Sometimes they are told records have been lost. It is believed many are stored in OMRDD property in Willowbrook, where patients once lived. Invariably, confidentially rules are cited, rules that didn’t even exist when the state school was around. No information on former patients can be given out, they are told, including where they were treated, how they died, where they were buried, if they might still be alive.” (4)

Vanessa DeBello, whose website “A Voice Behind The Wall”  (5) tells the story of her mother who grew up at  Willowbrook.  In her mother’s own words she says that when the girls in her dormitory had visitors on Sundays (the only day visitors were allowed) they would go back to the dorm to change their clothes into “pink dresses and shiny black shoes”.  “Then the attendant came to escort the girls to another building – one that didn’t reek with the smell of feces and urine.”  If I don’t “totally” blame the staff for abuse, I would have to blame them for the cover-ups.

(My mother said “in all the times she had been to visit the institution the building that HER son was in, was just fine! “)

Vanessa DeBello also has a part of her website dedicated to those who are trying to find relatives, whether dead or alive, that were once residents of Willowbrook.   Because of Privacy laws, those who had relatives there at one time cannot get information as to where they were transferred, or, unbelievably, where they are buried.  There have been reports made by workers during Willowbrooks “deconstruction” that “ bones were found on the property – no names, no dates”. (3)

Below is a link to a New York Times article by a woman looking for information on a deceased relative that was housed at Willowbrook.

 http://www.nytimes.com/2008/05/08/nyregion/08towns.html?_r=2&ref=todayspaper&oref=slogin

 

There may still, to this day, be much secrecy about what went on at Willowbrook State School up until 1987, but let it be said that great strides have been made in the 23 years since in the treatment and non-institutionalization of the mentally handicapped in the United States.And I am lucky to know where my brother is today, even though, as far as I can determine, he was one of the last 250 to leave Willowbrook when they closed it down forever in 1987.

Bibliography:

1.  The Willowbrook Wars (A Decade of Struggle For Social Justice)
     David J. Rothman & Sheila M. Rothman
     Harper & Row, 1984
2.  . “Excerpts From Statement by Kennedy”, The New York Times, September 10, 1965
3.   http://willowbrookstateschool.blogspot.com/
4. http://www.silive.com/news/index.ssf/2008/08/searching_for_the_lost_souls_o.html
5.   http://willowbrookstateschool.blogspot.com/
6.    Photo Credit

The (Un)Forgotten – Part 2

To read Part 1:  The (Un)Forgotten

The semi-annual reports from The Dept of Disability Service Office (DDSO) all start the same.  Cut and pasted:

 “Warren is a handsome gentleman with dark hair and eyes and a smile that can light up a room.  Warren’s smile is contagious.  Warren can say a few words but this is only on a rare occasion.  Although Warren is non-verbal, he is able to express his emotions, wants, needs and desires in a non-verbal way through actions, body language, gestures and some sign language.”  In another paragraph it says that Warren is “electively mute”.

　                           Warren is saying “Please”.  “Please may I open my gifts?

(Not mentioned here is that Warren is missing the tops of at least 6 fingers, and, sometime in the past, his nose had been obviously broken.)

I’m told he loves music.  That must be a family trait.  Music has meant so much to me my whole life, even though I don’t play an instrument.  Our brother (Warren’s and mine) has been a drummer for the past 40 or so years.  Warren loves “classic rock” – a man after my own heart.  I’m told he can spend hours sitting on the back porch of his home in Plattsburgh listening to his CD’s, and rocks back and forth, from his left foot to his right foot.  His favorite group is the  Beatles.  Interestingly enough, I did not know the following, which I inserted in part 1 until I was researching for this article:

According to Wikepedia:
“After John Lennon watched (Geraldo) Rivera’s report on the patients at Willowbrook, he and Rivera formed a benefit concert called “One to One”.
Some cosmic connection do you think?

In a recent note I received from his caregiver, it stated, “He is doing well.  Has calmed down a lot over the years and seems to be happy.  Smiles and laughs often”.
“Has calmed down a lot over the years”

 In 2002, the semi annual report I received from DDSO said:
”Warren has a history of stealing food.  Warren is cautious of new people and will often display maladaptive behaviors to see what he can get away with.  Since he is non-verbal, he doesn’t have the ability to tell anyone if an abusive situation has occurred. Warren can become physically aggressive towards others if they are between him and an object he is focused on. Warren has the potential for self-abusive behaviors, such as eating and drinking non-edible items.”
(Note:  One of his diagnosis is PICA; another is OCD)

“Staff should be aware that he often grabs hot liquids or items cooking on the stove and may try to consume them.  He should remain within eyesight at all times while in the kitchen.”

OCD is another diagnosis of Warren’s.  I find this one interesting in that family memebers all around me seem to have some sort of OCD tendencies.  Two of my sisters and two of my daughters.  When my daughters and their aunt got together one time, it sounded like an OCD fest, finding all of the same idiosynchrities they had in common.

“Warren has some OCD behaviors that keep him very active. He likes everything to be in its correct place, such as furniture being arranged in a particular way, the phone hung up in a certain way, the curtains hanging “just so”.  “He keeps things in order.  He can be quite helpful in clearing things away, such as mats after PT and arrange and clear the living room after various activities.  In the past there has been some concern that his arranging and organizing sometimes intrudes on activities that were in process!!”
(…This brought a smile to my face!)

From the 2006 Annual Report, they say of Warren:
“Social isolation and withdrawal continue to be a major concern in his overall adjustment.  He continues to spend a considerable amount of time apart from the main group, typically engaged in some rocking type behavior, but his current status still shows significant progress over patterns of adjustment Warren displayed during the earlier years of placement.  His overall behavior adjustment had improved dramatically over the years and certainly since the beginning of his placement in Clinton County.” (1986)

 “Warren tends to choose people he will trust when going out into the community.  He will show greater participations when with them.  he has been known to put his head on their shoulder or will gently touch their ear lobes at times.”  He greets others by shaking their hand, however, he does not initiate this action.  More often, Warren makes his acquaintance with others by gently touching both of their ears.

 

 “Warren is a very interesting and complex person who is very in tune to his environment.  At times, his way of exploring the environment can run contrary to accepted procedures and safety factors”.

 

I love how they call Warren a very “interesting and complex” person.  It shows the respect that he garners as a person, not simply someone or something to be taken care of.  Not “forgotten”.

                          “Warren is capable of making himself a cup of Instant coffee and using the microwave.”

“Warren makes his acquaintance with others by gently touching both of their ears.”
“Seems to be happy”.   

 I guess that’s all you can ask for.

 

He grew up in Willowbrook.

 

For those of you reading my story, consider that your ears have been gently touched

by my brother.

 

 Part 3 will be about Willowbrook.

 

　

　

　

　

　

　

The (Un)Forgotten: Part 1

His name is Warren and he is what they call “Profoundly Retarded”, which I am sure these days is no longer politically correct, but, that is what he is.

Warren is my brother.  Five years my junior.  I wanted to honor my brother as his 55^th Birthday just passed, and to be perfectly honest, I do not think of him very often.  I have not seen Warren in over 40 years.

I began corresponding, a term I use loosely, as Warren does not write.  He does not even speak.  His IQ hovers below 20.  He does not know who I am, an excuse I saw my parents embrace most of their lives to alleviate the guilt of no contact, of giving up their parenthood, when it came to their 4^th born, and first born son.

 

To be fair to my parents, it’s what you “did” in the 1950’s.  Your Pediatrician suggested it, your parish priest recommended it. 

Warren was approximately two years old when it was becoming more and more obvious that something was wrong.  Hours would be spent sitting on the floor, with his head against the wall, rocking back and forth, back and forth, back and forth.   His hair had worn a little bald patch in the spot where it met the plaster. Words were not spoken.  Words were repeated, like a parrot would repeat what it had just heard.  No words came out of their own accord.  No babbling two-year-old banter.  The type we parents sometimes complain about.  I’m sure there was no complaining by my parents.  Only worry.  Enough worry to make appointment after appointment with specialist after specialist. 

Diagnosis:  Severe Mental Retardation.  Age, four.

 There were three other children under six years old to take care of.  My father was manic depressive.  What would you have done?  What would I have done? 

With three children of my own (all born within 27 months) I’ve often pondered that question. There are those who say that the parents were ashamed.  Other say they just “threw their children away” “forgot about them”.   I don’t pretend to know the answer. 

Everyone is someone’s child, 

At least Dad was going through a manic stage and he was a salesman working on full commission.  These were years that we had lots of money! 

The decision was made that Warren would be sent to one of the best and, I’m sure, expensive private institutions in the Greater New York area.  A place called Ferncliff Manor.  It is now called “Sail” the School for Adaptive & Integrated Learning @ Ferncliff Manor.  It is still on Saw Mill River Parkway in Yonkers,  I remember going every Sunday afternoon to visit Warren.  I was 9.  We would go to the Carvel Ice Cream stand down the road.  Sad but true, this is really the only concrete memory I have of my brother.  Carvel on Sundays, for about 6 years. 

Well, unfortunately, what goes up must come down, as they say.  The mania of my father, along with his record breaking sales performance of the past four or five years, came crashing down.  He was hospitalized and the income dried up.  Fortunately, he came from a well-to-do family and they took care of us for the duration, but the private institution had to give way to a State Mental Hospital.  Maybe the three most dreaded words in the English language.  Warren was transferred to Willowbrook State Hospital on Staten Island.  It was the largest institution for the retarded in the world at the time (and that was not a good thing) 

 My brother spent about 20 years of his life at Willowbrook.  The place that Robert F. Kennedy called “a snake pit” in 1965.  The place that began the career of an unknown investigative reporter for WABC TV in New York in 1971, named Geraldo Rivera when he broke the story of the abuse and filth of this institution. 

According to Wikepedia:
“After John Lennon watched Rivera’s report on the patients at Willowbrook, he and Rivera formed a benefit concert called “One to One” (released in 1986 as Live in New York City.)”  Geraldo won a Peabody Award for this investigation and garnered national attention.Willowbrook lost a class action suit with the State of New York in 1972 and was closed forever in 1986.  My brother is considered a member of the “class of 1972” due to the lawsuit and has his own Consumer Advisory Board Advocate.  I believe he lived there until, at least the mid 80’s.  He now resides in a group home, with three other men and 24 hour care in upstate New York.

 
Warren Abt 1995

I began corresponding with Warren (well, his caregivers) when my children were old enough to understand.  And I wanted my brother to somehow “know” that he had 3 beautiful nieces.  Of the six children that my parents eventually had, to this day I am the only one with offspring.

I shall share with you of some of that correspondence and
I shall also tell you of Willowbrook. 

Imagine

Above us Only Sky

“Imagine there’s no Heaven
It’s easy if you try
No hell below us
Above us only sky”
            John Lennon 

 I try but fail

to imagine how it would feel

if I were, say,

a butterfly,

not the human kind

of soul

or the mind of that

sister, father, daughter

friend

that could not connect

with reality,

and sadly,

made other plans.

 

Imagine what it would be like

to have no control

or desire,

for that matter,

to live a life

of any kind;

to find

a reason

even

to open your eyes

each day.

 

Imagine

standing on the edge

of that ledge

looking at the street

below

so

bottomless

so

ultimate

so

critical.

 

the pivotal

point

when all else

becomes

irrelevant

save

that determination

of thought

that won’t

unhinge its grasp.

Convinced

that peace

will be

at the canyon’s floor

 

I mourn for the psyche

of those beautiful minds;

while I celebrate the

simple fact

that

I, myself, can’t imagine.

 

“Imagine all the people
living for today”

 

 

 

 

 

 

Tiny Dancers

Childhood should be carefree.
The hardest thoughts should be -
which tree to hide behind
So they won’t find me!

Colors of chalk
on the sidewalk.  
What to draw today?
Which frilly dress
from the old wooden trunk will I pick?
Which bobble of beads from mom’s jewelry bin
Shall I loop around my neck and spin
like the ballerina atop a music box.

Running free on the water’s edge,
chasing sand dollars down the beach
as far as the eye could see and within reach.
These are what memories of childhood should be.

The jingle jangle of the ice cream truck
on a sunny summer day.
We immediately stop our play
and run;
First to mom for money,
then to the street to beat
the neighbor kids and be first in line.

Childhood should be unfettered
of  burdens and worry.
The qualms and cares of the world
in a hurry to destroy itself
should burden the shoulders of others.  
Not brothers
or sisters.
Not the children.
Not the children.

I was their protector,
defender, guardian and guide;
They trusted me, to be their god
who would heal and deal
with pain and strife
of life;

How could I 
protect them.
Enough?

© 2010 Marlene Dunham

Photo Credit

Seeds of the Dandelion

Seeds of the dandelion

appear intertwined;

Tightly woven tendrils

weave and hold

in close bond;

Stretched fingers

offering anchor for each other

though hesitant.

When the time is right

and the slightest wind blows

seeds of the dandelion

               go.

Parachutes of white snow.

A moment in time

stalk stands naked in the wind

having lost everything;

Though the taproot runs deep

and in reality,

millions more will seek

a new birth.

We may think it a waste

unwanted seeds being placed

hither and yon.

But what about the Dandelion?

Some call this weed a ruderal

though in fact it is medicinal

this “lion’s tooth” with the long taproot

feeding bees and butterflies.

With detoxifying properties

this plant has seen atrocities

of prejudice, bigotry and intolerance

but it just goes on to do it’s job

holding on as long as it can

til the parachutes of snow

                 go

and the cycle of life repeats.

                                                                                                                                     © Marlene Dunham 2010

Off Kilter

 

Off Kilter

                       a bit askew

I’m sorry

but,

I never knew.

My mind will not embrace the pure confusion

I’m sorry

but

I did not know.

I don’t know what to do with all this tension

I now move forward with my apprehension

a bit                            

                              off kilter

does explain a lot.

Confusion

not Delusion;

My heart is breaking yet it tries to mend.

My mind does not know where to spend

the energy it needs to find the answers

though forgiveness I am asking above all else.

I should have known

I never knew

I’m sorry

                                    a bit askew

             Off kilter

                                                                                                                                      © 2010 Marlene Dunham

Frenzied

Volcanic eruption
corruption
unemployment
recession, depression
Iraq, Iran, Afghanistan

Earth quakes
rumbles
Wall Street crumbles
Haitian children wail
tidal waves prevail

Global warming
fiction or warning?
Taxes, health care
how to handle
the next big scandal

Hawaiian birth
takes precedence
over incidents. Coincidence?
Arizona immigration
discrimination

Oil spill
of gigantic proportions
contortions
in the Gulf
causing strife, ending life

Bomb in Times Square
where? not here!
just sit and sip your beer
watch the world go by
with a wink and a sigh!

Sometimes we are powerless
nothing we can do
our head in the sand,
don’t understand
not care, or dare
to question?

What is our place
in this space
our destiny and fate
to help our world continue on
so our children can survive?

The world is spinning out of control

Iraq, Iran, Afganistan
Quakes, Rumbles, Crumbles
Global Conservation, Preservation
Distortions, Contortions
Bombs and Beer
Dare to Care

Frenzied

© 2010 Marlene Dunham