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NOVEMBER 27, 2010 11:54PM

My (Un) Forgotten Brother Pt 2

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The (Un)Forgotten – Part 1 

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”.


Warrens Bday 2006 
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.” 


PICA – according to Wikepedia:

is a medical disorder characterized by an appetite for substances largely non-nutritive (e.g. metal, coins, etc.) clay, coal, soil, feces, chalk, paper, soap, mucus, ash, gum, etc.  or an abnormal appetite for some things that may be considered foods, such as food ingredients (e.g. flour, raw potato, raw rice, starch, ice cubes, salt) The conditions name comes from the Latin word for “magpie”, a bird that is reputed to eat almost anything."


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!!” 


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 making cofffee    

“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.


*  According to my mother, Warren left Willowbrook in 1974 ( the year my parents moved away from the State of New York and never saw him again) but, according to the records, Warren was one of the last ones to leave Willowbrook before it closed forever in 1987.  I will continue to dig for truth.




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Thanks for sharing, and best of luck my friend.
This is very touching and something which not everyone knows about or understands just how difficult it can be for one person to be born okay and another not, and they cannot live in the family.
This is very fascinating and gut wrenching, at the same time. I can't wait to read more. Consider my ears touched.
It was interesting to learn more about Warren and his condition. You are a sweet sister. Warm wishes to you both for the holiday season.
I agree--Warren is interesting and complex. There is a great range of emotion quietly expressed in the paragraphs you have shared with us--a snapshot of an entire life.
Very interesting to read on both a factual and personal level.

Anyone who loves music, especially The Beatles, can touch my ears any time they like. Warren has excellent taste and what a lovely way to greet people.

I look forward to reading more and hope your research goes well.
My ears .... and my heart .... have been so very gently touched, tril.

With lots of love ... thank you.
I'm glad that he is well cared for, and that those who do so have learned his "language". Best of luck in learning about the past.
My God, I will never know why man can be so cruel to others. Hurt others who have done nothing to them. Keep digging T, this is a great story of survival by your brother and he's overcome so much, I'm glad he's at least able to do things for himself. Plus, he loves the Beatles, my kind of guy!
Note to Warren: When you touch my ear lobes like that it makes me feel loved. Thank you for teaching me so much about what it's like to be you.

I am so touched by this story, this tribute to Warren. I don't really have words. But my ears are warm.~r
Warren has touched my ears without even knowing it...and my heart. And as a lifelong devotee of The Beatles, I get it.
I remember the expose on Willowbrook and just saw clips of the One on One concert. I hope you get the answers you are seeking.
Marlene, thank you for sharing another look into Warren's life! With the correspondence you receive from one of his caregivers it looks like he is in an environment that is quite upbeat and positive and even allows him the freedom to do things like some of his food preparation. Looking at him preparing his coffee using the microwave I have to say how great it is that we have devices like that which permit food preparation quite easily and I imagine there is much satisfaction for Warren to have the independence to do this on a daily basis.

That is quite a difference in years between when your parents were told Warren left Willowbrook and what the records say. I can see why you would want to explore this further.
thanks for telling us more of the story. I feel touched, especially my ears.
You're on such an important and touching quest, Marlene. Yes, my ears are touched this morning. I want to follow this.
Gently touched here too. I hope Warren had a nice Thanksgiving.
Sometimes Trilogy, I have no words here to say as a comment.
This is one of them.
I did read part one.
Stunned here.
Thanks for continuing to share Warren with us.
Mission said it ... as eloquently. Your writing captivates. It's to sense some enormous `
Intuitive awareness.
You have to wonder.
Tears misted my eyes when I got to the cup of coffee. I've given up coffee. Then, I drink. I'll always enjoy a cup of coffee. I'll horde food too. I almost thought`
Wow. I do see Warren`
Warren's traits are in me`
Not completely. Thanks.
I was reading an interesting article. I met a Yoga Teacher who has me breathing and pondering.
She's a bread farmer-marketer.
It's not a gusto-personal relation.
She speaks of cosmic (no fantasies),
planetary existence, states of being,
gradation of great spiritual aspiration,
P.S. Maybe I'll just agree with Mission.
Powerful memory. Your love to Warren.
I kept thinking ... It's Conscious Immortal.
This brief Life is just the beginning. Love.
It be better to not try to figure Mysteries.
Yes. Thanks for sharing. Warren knows.
Warren knows your Love. Love is Big.
I now will be pulling Strangers Ears.
The Lobes in the brain get to Smile.
What a sad story.. so well written.
rated wiht hugs
This is fascinating. Thanks for sharing and keep going with the research. I will think about lobe touch completely different now.
I was glad to learn more about Warren, trilogy -- that an electively mute man is described as interesting and complex is fascinating, I am so intrigued by the mind and it's mysteries.....I love that you're on a search for your brother's history, that you're giving him a voice.
Warren looks like quite the fellow!!! I am sure the staff write about him as a complex person because they know he is so much more than his diagnoses.

Are you familiar with a documentary walled "Where's Molly". I met the filmmakers at a sibling conference a few years back and can't recall their names (they were actually on Sunday Morning today) -- I think they are also in the pacific northwest and the film documents a brother rediscovering his sister Molly.

Our siblings have more courage, strength, and love in their pinky (even Warren truncated one) than most of us have in our entire lifetime. And they get up every morning and face a world that misunderstands them and often treats them with contempt. Still, it is also the case that those who get to know them also develop a great emotional attachment. Warren's experience with his (later) caregivers is similar to those that other sibs I know searching for the "lost" sibs discovered: that, caregivers often formed special bonds because they realized these men and women were all alone.

Thank you for letting all of us get to know Warren as you are getting to know him. Best wishes to you!! R
I love that Warren greets by touching ears. I don't know for a second it felt like someone looking for somebody like them, like looking for elf ears. I know that's silly but that was how it felt.
I think this trip must be hard for you but it seems like it is so worth it. I think I would really like Warren....
I read the horror stories in the Village Voice about Willowbrook. I'm so sorry your brother was there!
Thanks for this post. Although my son's disability is not as profound as Warren's, there are so many things about your brother that remind me of my little boy, who turns 4 today. It tears out my viscera to think of the way these children were treated a mere half-century ago. It is wonderful to know that Warren has found some measure of independence, and caregivers who appreciate him as an individual. I will keep my eyes open for your third installment!
Wow, people, (my wonderful OS people) you get it! You really do! I was so touched this morning (afternoon, really) to read all your comments. I wasn't quite so sure this series would be of very much interest. It's just a way for me to explore and express. Thank God for OS that there is a place to do that. How you all went away with "touched ears" made me cry. Thank you all.
@designanator: Yes, part of the sad story is the imense amount of denial on the part of my parents. That he was already gone from there by the time they "abandoned" him (my words, not theirs, of course) they so wanted to "believe". He must have been the last 250 remaining (out of 6,000) by 1987 when they closed it down. No one to advocate, I suppose.
@ArtJames: "Warren knows your Love. Love is Big.
I now will be pulling Strangers Ears.
The Lobes in the brain get to Smile."

Thank you sir.
Antoinette: Thank you I shall look for "Where's Molly"
Lunchlady: Warren is looking for someone with ears like his. Wow. Now there is something to think about. Maybe a "family" he belongs to? I'm going to think about that one for a while.
Thanks to you ALL!
What a touching post, I hope you find out what happened to Warren and that he has had a happy life.
rated with love
He has such a spirit! It breaks my heart to think of what he's been through.
Thank you for sharing this part two Marlene. A very intriguing person
and very touching story. I'm curious why he's missing tops on some of his fingers. ~R
I am touched ears and heart. I truly hope that Warren is at peace with himself and his world.
Utterly fascinating. I love that he "often makes his acquaintance with others by gently touching both of their ears." What a tender gesture. And I love that you are sharing more pictures of Warren. The pictures you shared in the first post about Warren have stuck with me, as I'm sure these will as well.
My ears feel wonderful now! Sounds like Warren has been well taken care of to me.
tril, first, my best wishes for Warren, and his sister.

Your post is extraordinary. Just laying out these reports the way you do, with very little commentary, somehow takes it to a lyrical place, and a very mysterious one at the same time.

As a dedicated lover of the ritual of coffee, I am so touched by seeing him make his own.

And having seen the fruit of your genealogical work, I know you have the pluck to find the facts, the papers, the reports, from the missing 13 years. Good luck on your quest.

This is just a great post, and I am so touched. Like all the others, on my ears.
Trilogy - Thank you for sharing with us this second post abourt Warren. This post gives us a broader and more endearing portrait of your brother. I am so glad he is in a place where they are able to respect his achievements and see him as an interesting and complex person. I understand why you want to keep digging - it was the same force that lead me to dig into my mother's life - the need to know the truth about our loved ones. I wish you courage and strength in the next step on your journey. I will read it eagerly.
This is sad story. Best of luck. Well written. R
When I was a child, my Nonc Douglas disappeared. I later found out that he was sent to a place called Pineville and never returned. I wrote a story about him which I will post later in the year.

stop the advance of the 451s
Touching beyond words.
the truth is in your brother: his eyes, his rocking, his smile, his touch, and you. Well written.
I am so horrified. How did he lose his fingertips or break his nose? Given what I've read about Willowbrook, I can only imagine the worst.
And his parents abandoning him. Wonder what that felt like?
You have a beautiful brother.
Oh, Lordy, God bless your brother and you. RRR
Thanks for the more. Such a deep vein, this one.
My ears are grateful for his gentle touch. My heart is grateful for the gentle love I hear of a sister for her brother so long taken away from her. How much more, I imagine, you have to say for him, about him, to him. So many beginnings of understanding him in these administrative comments and yet no sense that anyone actually took time to draw forth from him the possible wealth of his complexity.

Thank you for sharing your brother here with us.
"For those of you reading my story, consider that your ears have been gently touched by my brother."

There is no greater gift than the love of those truly innocent.
This is an amazing "Rainman"-like story and I am so intrigued (as many are) Looking forward to hearing more about your search. Thanks for this great post. R of course
This is unbelievable. I feel so selfish being focused so long on our family's issues and seeming to ignore the trials of others. Especially in light of your kindness to me, I wish I had paid more attention, just to say a kind word in return, offer a shoulder, commiserate about (mild) OCD and true mental illness. So beautifully and poignantly expressed. Your brother, your whole family, we who read your wonderful work are all lucky to have you.
I am so blessed to see this on the cover. Not for me, but there is Warren's face. I wanted to show him as a "person" and now he is. Brings tears to my eyes.

@Fusun. I too, am curious about his fingers (and his nose). Perhaps i will find out one day.
@Bonnie. I'm sure you meant well. But these records were not private. The private records I cannot get. that's what I'm working on.
Sally. I'm honored by your kind words. We all have a story. All our stories are worthy of telling. We are blessed to have each other to listen.
Most people would consider Warren a skeleton in their closet. Your candor is refreshing, and it's a good story.
Amazing story. I remember Willowbrook.
sorry i'm late, but thanks for keeping us in the loop on what you find out about warren and his history. i wish i could touch his ears in return. am hoping for more, tril.
Thank you for sharing your and Warren's story. It helps.
This guy grows on me ;-) - there's a Beatles CD inside one of those, am I right ?
How lucky to have found each other again ; thanks for sharing more.
You know how painful it's going to be, the history, don't you - it may be a blessing, that he can't remember.
This is quite touching, and shining a light onto a portion of our society that our society would prefer never to see. At the same time, that light shines on the same part of our society that doesn't wants to keep the "different" in the shadows. It speaks eloquently to the importance of recognizing the shadow in us all and embracing rather than rejecting it.

Thank you for sharing this amazing story of your brother.
Sorry to be so late - I was away when you posted! I am so delighted to read about warren, especially that detail about gently touching ears. Just think - for him to be able to make his own coffee and to sit outside at will is likely still such a surprise, after institutionalization. I'm so glad you are telling his story and giving your ears and our ears his gentle touch. xo
Thanks ONL & OES
Candace: I thin k you did just touch his ears. Thanks
Thanks Kim - and, yes, i know. This guy grows on me ;-)
I thought that was cute!
MOC: Your words are so kind - thank you
Alison: thanks so much for coming by - there's no such thing as late. I always appreciate your kind words.
So touching, so sweet. The photos break me. I'm a little confused about his fingers and nose, how that happened...and I read the first part when it was posted...perhaps I've overlooked something. Will continue.