“One Flew East, One Flew West….”

It seems to me that either one believes that all human beings are equal to oneself in dignity and are entitled to the respect that we would give to “our own” or one believes that some human beings are intrinsically better than and more deserving than others.  I had two experiences this week – the same day actually – that struck me with the difference.

After meeting with the social worker for the boy in the state psychiatric hospital last week (see last posting), I met with the boy’s psychiatrist this week.  There has been a huge positive change in this boy’s behavior over the past two months.  The hospital staff, across programs, have noticed it and commented on it.  Prior to the change though, there was a change in the boy’s thinking, which led him to recognize in his gut that he’d been the emotional target of his parents – who’d ended up giving him up for adoption.  A very freeing revelation for him.

The issue now, for me, is whether or not it is now time for him to be weaned off the psychiatric medications, which have served – no matter what they say otherwise – to control his otherwise out-of-control behavior.  Thus the meeting with the psychiatrist.  I am convinced that the anger that has been released in this kid from recognizing that he didn’t deserve what had happened to him now makes the meds unnecessary.  Weaning the boy from them would tell us for sure; would build up his confidence; and would protect him from who-knows-what-future-physical-consequences may lie in store for him by having his thirteen year old body being subjected to this routine of four daily psychiatric meds be given to him.  Those of us of a certain age have a deep emotional reaction to one of them – thorazine – due to our experience of seeing Jack Nicholson in “One Flew Over The Cuckoo’s Nest.”

The psychiatrist told me that he would not wean this young teen off the meds as it is the meds that have brought him to this level of behavioral stability.  (Did God tell the doctor that, I wondered?) When I pointed out that this now is the exact time and the exact place to try getting him off and see what happens, he told me that that was not so. He told me that just as some diabetes patients have to take insulin for the rest of their lives, and some folks with high blood pressure have to take meds for that for the rest of their lives, so too, some folks who are mentally ill have to take – he specifically said this – thorazine for the rest of their lives.  Really?

That distancing from this kid – he is, after all, mentally ill – made me mentally ill.

We had a psychiatrist at one of the institutions I once worked in with the same attitude towards his “patients.”  We simply called him “Doctor Doom.”

That evening in the mail when I got home was a letter from the man I met in February or March of 2012 (see blog postings from that time) who was one of the three convicted of manslaughter in the beating of my son, Abraham, that led to Abe’s death (see postings from August 2011).  I haven’t heard from him – Micheal (sic) – since I met him that day in the prison.

He was writing to tell me that he has his first parole hearing coming up this spring. He wants me to write to him to give him my opinion, based in part on our meeting, of whether or not he should be released.  He apologized once again for “the pain that I have caused you and your family.”

I was very happy to get that letter.  It took guts for that man to write to me and to risk me then doing everything in my power to keep him in prison.  I had not paid any attention to when he gets out of prison and did not know about the parole hearing.  I suppose my supporting him would help him with parole just as I suppose my opposing him would hurt him.  And certainly that has to be a motivation behind him writing to me.  But I don’t believe it’s the prime motivation. I think Micheal is looking to see if I will continue to be as real with him as I was in that prison visiting room.  Remember, I went to see him because I wanted something from him: I wanted to know what had happened that August night.  All human motivation, as Chris Huntington taught me, is  mixed. No one but God Himself is capable of doing anything for one pure reason. We don’t work that way.  Our job is to continue to grow over our lifetimes and thus to get our motivations as clean as we can.  That is the best we can ever do.

I gave Micheal’s letter to one of my adult sons to read.  My son’s response was that it was “considerate.”   Micheal’s realness in that letter came across even to Abe’s brother.

And I thought:  whom do I trust more?  Hell, which do I trust at all? This man who was partially responsible for my beloved son’s death or this psychiatrist who is very responsible for this other boy’s continuing to be written off as “mentally ill.”

Without a doubt, it’s Micheal.  I miss Abraham, desperately at times, but I’m proud that it’s Micheal whom I trust.

I took risks in meeting Micheal; he’s taking risks in telling me about his parole hearing and putting it in a letter (he could have had his family reach out to me by phone or in person.) This psychiatrist is taking all the risk that a robot might.

Yes, it’s Micheal whom I trust. I’m proud of it.  I’m also proud because I am certain that Abe would stand with me on this.

And I am most certainly going to help Micheal with parole.  Why wouldn’t I? He wants – unlike one of the others convicted of Abe’s death – real.  And real in the end is the only thing that protects any of us.





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Feelings Rule?

When a child in the foster care system has no permanent family, where the child then lives is a function of the child’s behavior. Least restrictive, and least expensive, is a foster home. If a child’s behavior precludes living with a family, then a group home placement – somewhat more restrictive and also more expensive – is tried. If the behavior is still such that the child needs even more supervision, then the child could be placed in a residential treatment center, which is an institutional upgrade of the old orphanage.  It is very much more restrictive, often having its own school on grounds for example, and far beyond expensive. However, if a child’s behavior requires even more control, the next step is a locked psychiatric ward. Short term, that would be in a local hospital; long term – and the end of the road – it would be in a state hospital. The expense is beyond belief.  Restraints, medication, and sometimes one-on-one staff supervision, become the ultimate behavior management tools.  There is no more restrictive place to go from here.

Obviously (I assume it’s obvious, that is), the children in such hospital placements are often very confused and angry kids and they need sharp and simple clarity in all communications with them.  They are astute observers and learners and like all kids they watch and learn from what the adults do, and probably more importantly, from what the adults do not do. One needs to be very careful with them.  Sloppy thinking does not cut it when working with them.

This past week, I met with one such foster child, a young teenager.  This boy, like so many of those in the hospital with him, has problems separating his feelings from his behavior.  At some point or another in the days before I saw him, he blew up at one of the nurses who wouldn’t give him what he wanted when he wanted it. He become loud, nasty, disruptive, and abusive to her.

In my meeting with his social worker, I said that what this boy needed was for us to draw the connection – a direct line – between his behavior and the concept of “abuse.”  He needed to understand that while he didn’t feel abusive, he most certainly was acting abusively.  And beyond that, he needed to comprehend that his feelings are not the measure of acceptable behavior.

When the young teen entered our meeting, however, the social worker emphasized to him that his behavior had been unacceptable because he had hurt the feelings of the nurse. The nurse, after all, although a professional, has feelings also etc. etc. etc. And he should monitor his behavior in that light.

And I – internally – went bonkers.

He is to measure the rightness or wrongness of his behavior towards the nurse by whether or not he hurt her feelings???  What if she was such a cold person that her feelings were not hurt by his behavior, any more than if he were an animal in a zoo flailing out in reaction to some issue the animal had? The nurse’s lack of being bothered by his behavior would  then free him to act out?

Isn’t his issue – the core one that keeps him in a hospital – that his feelings are the be-all and end-all of the way he measures his behavior? And she’s implying he should give that up only if he hurts someone else’s feelings?

I know that it was not the social worker’s intention to teach this boy the lesson that feelings must rule. But it’s what she did – presumably inadvertently – by not teaching him that his behavior must be measured by something other than feelings – his or anyone else’s.  If “being nice” worked for him, would he have ended up where he is?

His behavior towards that nurse was wrong because it was disrespectful whether she felt disrespected or not. It was abusive whether she felt abused or not.  She is not to be at the mercy of his feelings. But neither is he to be at the mercy of hers.  That is, after all, the very definition of abuse.

I suppose that empathy is taught by getting little kids to recognize that other people have feelings too and then working on their behavior from there. But I think it is backwards, at least when it comes to older kids. It seems to me that right and wrong has to come before empathy. It seems to me that good must precede nice.

My relationship with Chris Huntington began by him kicking me out of school (“today”) because of my behavior.  He wasn’t focused on my feelings – my fury about what he was doing didn’t even come into his decision.  He was focused solely on what was right.  When I tried to negotiate with him, to “compromise,” to buy time, I got nowhere, infuriating me even more.  But also bewildering me. He wasn’t being mean or nasty or abusive to me.  And in my gut I knew that.  I knew that he was responding to me and to my behavior, and not reacting to his feelings about me and that behavior.

My fury was irrelevant to what was right or wrong??? What??? What world is this???

At seventeen years old that was a revelation to me.

Today, March 10, Msgr. Christopher Huntington is dead thirteen years.  He lived to 89 so I know that I can’t complain.  But I am anyway.  He introduced me to a world, to a perspective, to a way of thinking, that I hadn’t known existed.

Because I was stupid or because of what I’d learned from our culture without even knowing it?

Thank God that I had him.



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“Um, not at this time”

[I can see that the only way I am going to be able to give this blog its necessary attention is by scheduling a regular time to post. So, beginning on Sunday, March 10 – the sad anniversary of my beloved Chris Huntington’s death (see beginning posts) – I am going to attempt to post every single Sunday.   I will try this till June 30th and then assess from there to see if it’s working.]

What brought me to that decision was the horrifying news this week out of a California independent living home, about the nurse who refused to do – or get someone else to do – CPR on a woman who’d stopped breathing.  [http://newoldage.blogs.nytimes.com/2013/03/06/amid-cpr-controversy-many-unanswered-questions/ ]

Reading about it is one thing, but hearing the 911 tape was simply unmatchable in experiencing cold bureaucratic answering vs. human responding. When told that the woman would die without the CPR, and then asked if there was anyone else available to do it – any passerby even – the nurse’s reply?  The title of this posting: “Um, not at this time.”  The woman died.

This morning I heard some nonsense by one of the WCBS radio commentators (whose comments I usually like and agree with) that the relevant fact here was that the woman was 87 and that death comes to all of us and we must accept that fact.  Or some such ridiculous perspective.  We all know about death and we all know about old age.  No one is arguing that CPR would have saved this woman’s life for sure.  Rather, the argument is that the absolute coldness of that nurse’s answer to the 911 operator was her response to the distress of another human being. Contemptible, frankly.

When I once asked Fr. Huntington how it was that any of us dare spend a dime on anything frivolous when there are people starving in this world, his response got to the heart of it for me, as it has turned out, for the rest of my life (to date, of course). We cannot, he said, respond to everything in the world. Nor are we called to. But we are called to respond to that which comes before us.  It doesn’t come before one more simply than a woman lying on the floor in front of you not breathing, does it?

Why did this story inspire me to get this blog going more regularly?  Because last November, I had the idea of posting about folks who go above and beyond the requirements of their positions and thus witness that we are all, first and foremost, human. That was the result of experiencing some workers who went beyond their jobs with our kids and in doing so, reinforced that the essential relationship among all of us is as one human being to another.  We have roles, and the roles have rules that must be respected. But that does not preclude stepping beyond the roles to keep the essential human relationship.  There is nothing wrong, for instance, with a caseworker calling one of their charges from his/her cell phone after hours to wish the kid a “Happy Birthday.”  There would  be something wrong with not doing it, simply because it was past 5:00.

I suspect this is why there was such a huge reaction to that young cop in NYC who bought that barefoot homeless man a pair of boots this past Christmas season. [http://www.nytimes.com/2012/11/29/nyregion/photo-of-officer-giving-boots-to-barefoot-man-warms-hearts-online.html]  That the homeless man was later reported to have sold the boots, does not change the nature of the story. The cop transcended his role as a cop and responded as a human being. It was the positive side of this cold nurse story of this week. Both are witnesses, and as such they are very powerful. But they are witnesses to very different perspectives that we must choose between. My vote? We need far more folks like that cop; far less like that nurse.  Human over bureaucrat; response over reaction.  Otherwise, we can be replaced with robots.

We must always respond as human beings to that which is in front of us.  Again, Chris Huntington had it exactly right.

I miss him deeply.



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A Phenomenal New Book

Yes, yes, yes. I am alive and I am still blogging. And I think I will catch up soon on the blogs that never happened. But I had to get this one done today: for anyone looking for a last minute gift for Christmas and/or for serious folks looking for serious reading, I recommend the new book, which has already made the NY Times best 10 books of 2012, “Far From The Tree” by Andrew Solomon.  Right from page one – page one mind you – where he makes so explicitly clear the profound and difficult truth that “Parenthood abruptly catapults us into a permanent relationship with a stranger…” I was blown away. Adoption does that, we all agree. Solomon goes deeper and beyond anything I have ever read and says that that is what [all] parenthood is, despite our fantasies otherwise.

In this huge book – I can’t tell how many pages because I am reading it on the Kindle – I am seeing truth after truth after truth. By page 32 (how’d I find that out?), he writes – and he gets it summed up in a nutshell  – what we attempt to train our new adoptive families on, over the course of forty training hours in fourteen weeks:

“….The anger [of the different] is pervasive. ‘Adults responded to my difference by helping me, but some of my schoolmates responded by calling me names,’ wrote Rod Michalko, who is blind. ‘Only much later did I realize that helping and name-calling amounted to the same thing.’ ”

“Arlene Mayerson, an expert in disability rights law,” Solomon continues, “contends that benevolence and good intentions have been among disabled people’s worst enemies throughout history. The able-bodied can be generous narcissists: they eagerly bestow what they feel good about giving without considering how it will be received.”

Generous narcissists?  Without considering how it will be received?  Might that be why the entire child welfare system seems unable to figure out how to really give the most desperate kids what they need to free themselves from the chains of their personal histories? Might it be too much about us – the helpers – feeling good about what we feel, what we believe, what we think, what we do?

I cannot believe what I am reading; I am simply astounded by it.  And it has helped me understand some experiences in my life that I knew were “off” but couldn’t name why. For only one example, I refer all to my posting of July 2, 2012 titled “Can I Help You?”

Merry Christmas to all who will be celebrating on Tuesday.  I hope to be back here in the blogosphere before the new year.





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Giving vs. Using

“I kept thinking how defeated I would feel if I had to take handouts. I couldn’t bring myself to interview the people and ask what it felt like.

I knew what it felt like. Lousy.

There had been TV crews all over town, but I didn’t feel excited. I felt they were gawking at us.

When I approached people, instead of saying, “Can I ask you a few questions,” I’d say, “Can I ask you a few questions or would you rather be left alone.”

“Thank you,” a man said before turning away.”

                                                                      Michael Winerip – NY Times

Thank you, Michael, for understanding – and publishing – the difference.





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Clarity, huh?  The math really distorted my point at the end. Alright, that’s what I get for hitting send before triple checking and for even attempting to write a posting till the house is empty…..

But now everyone is gone, so let me try to fix that last sentence with all the percent stuff.  My point was this:  I believe that there were something around 3,000 folks killed at the WTC.  And those 3,000 lived all over the metro area, which has about 16 million folks.  It’s not a wonder that I didn’t directly know anyone therefore.

But these 100,000 homes just on Long Island alone?  Not considering the horror of what’s happened in the rest of the metro area: Connecticut, Jersey, Manhattan, Brooklyn, Queens, and most especially, Staten Island?  It is not a wonder, not an oddity, that I knew three folks who lost their houses. The oddity with these numbers would be if I didn’t know anyone.

That’s how enormous and widespread the destruction has been in the metro area.

And comprehending numbers that big or so far out of our personal experience requires bringing it down to some perspective that is personal.  (Which, again, is why I do this blog in the first place: to give folks true perspective on what it means to be multiply betrayed.)



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One of the main purposes of creating this blog was to help folks think about the population of the multiply betrayed kids in a new way. 

I have been amazed over the past few days that I personally know three families on Long Island who have lost their homes completely.  Three. Three!  Three?  Three?????

I haven’t lived on LI for over forty years.  What an oddity I thought.  And, with 90% of the Island still – four days later – without power, phones, and Internet, I may end up knowing more.  Odd.

I measured it by the horror of the World Trade Center.  I personally knew nobody who had been killed there. I knew folks who knew folks, of course. I had relatives of relatives who died. I had neighbors of neighbors who died. But personally? I didn’t know anyone.

Yet now I know three families, living in three separate towns, whose houses are gone. Three separate families who lost everything.  Clothes, mementos, bills, pictures, letters, financial records, computers, tools, furniture, even cars.  The very house itself, for each family, is either gone or will have to be condemned and razed.

Then, this morning, watching on TV the continuing coverage of this storm from hell, I was taken aback by one of those “factoids” rolling on the screen at the bottom.  It said that the Long Island electric company (LIPA) was estimating that 100,000 homes in their catchment area have been destroyed or severely damaged. One hundred thousand?  Not counting the ones in Jersey or the city?  One hundred thousand on Long Island alone?

And I thought that now it makes sense; my perspective shifted.  I had assumed, without thinking about it, that the three I knew were maybe three of a few hundred. It was an automatic assumption on my part. So, I had then consciously asked myself: “What are the odds of me knowing so many of these people?

But with 100,000 on Long Island alone, whose houses are gone or might as well be?  I know only three hundred thousandths of the total of those with such losses.  0.00003 percent?  Don’t hold me to the math – just to the enormity of what’s happened in the metro area.

Perspective. That’s the only real way to clarity, and therefore to understanding. 




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If Only I Could Write Like This Man…..

With thanks to my nephew, Gregg Willett, for posting this on Facebook. Thank you Gregg, on behalf of Luis, and Justin.

Love, as always, Uncle Jack


An Open Letter to Ann Coulter


John Franklin Stephens

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are – and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me.  You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.

Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics.  See if you can walk away with your heart unchanged.

A friend you haven’t made yet,
John Franklin Stephens
Global Messenger
Special Olympics Virginia


Using the word “retard” to describe me hurts

POSTED:   09/01/2008 12:30:00 AM MDT
UPDATED:   09/01/2008 07:38:28 AM MDT

By John Franklin Stephens


What’s the big deal about using the word “retard”?

A lot of people are talking about the movie “Tropic Thunder.” One of the reasons that it is being talked about is that the characters use the term “retard” over and over. They use it the same way that kids do all the time, to jokingly insult one another.

The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it, say that the term is being used by characters who are dumb and shallow themselves.

You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called “irony.”

So, what’s the big deal?

Let me try to explain.

I am a 26-year-old man with Down Syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job.

Every day I get closer to living a life like yours.

I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to over 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone’s voice.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, “unh huh,” and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.

That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

So, what’s wrong with “retard”? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the “in” group. We are someone that is not your kind.

I want you to know that it hurts to be left out here, alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.

You don’t mean to make me feel that way. In fact, like I say in some of my speeches, “I have always depended on the kindness of strangers,” and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making “retard” jokes or references.

Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke — the irony — that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a “retard” is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using “retard” is a big deal to people like me.

John Franklin Stephens is a Special Olympics Virginia athlete and Global Messenger who lives in Fairfax, Va.

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The Value of A Life

On Saturday, my thirty three year old son, Luis, moved downstairs into an apartment that we created for him.  From the inside, it’s a real apartment – kitchen, living room with dining area, two bedrooms, and a bathroom.  But from the outside, it’s not real as it’s part of my house: both his front door and his back door open into my house, not into the street. 

Nonetheless, it is a perfect solution for a very real problem. Luis has a very slow growing brain tumor. He was first operated on when he was eleven – before I met him.  He lost that part of his brain that controls peripheral vision, but gained overall in that all of his long term and very serious seizures dramatically ended.  But they couldn’t get the entire tumor out without risking him losing more function.

When he was twelve, he was referred to my agency, Family Focus Adoption Services, as he needed an adoptive home.  We tried a number of families, but nobody would take him. Perhaps because this cancerous brain tumor was practically guaranteed to kill him by the time he was twenty. Ultimately, I made the decision to adopt him and he moved in twenty years ago last week.

His tumor began to grow again and he had to be operated on again – a fourteen hour surgery – when he was twenty.  But he didn’t die. Soon after that, he graduated from his high school special education placement. He couldn’t easily find a job, so he went to work at McDonald’s on the weekends. Shortly thereafter, he miraculously secured a position as a part time janitor at the local school district.  This was his dream job. As some dream of Harvard, Luis dreamed of this. He is now in his thirteenth year on each job.  In the meantime, he also managed to get himself NYS certified (outside only) as a volunteer firefighter, a huge point of pride – deservedly so – for him.

The purpose of Luis moving into his “own place” is for him to develop even more independence, especially from me. It is the heavy weight of all parents of handicapped kids, to worry about what will happen to their grown kids when we are gone.  Reading about the recent abuse that goes on in these adult NYS group homes terrifies us.  So I want Luis to buy his own food, plan his own meals, cook his own dinners. I want him to walk from room to room without seeing me.  I want him to decide whether he likes living by himself or not. All before I die (nothing planned on that – just covering.)

Luis is incredibly happy; incredibly proud; incredibly excited.  He chose his own paint colors and insisted on doing the actual painting himself (ruining the rugs, of course). I took him food shopping and he liked buying what he wanted and not the things I would buy.  And so on and so forth.

So why do I tell this story here?  Luis was adopted through Family Focus.  When I met him he was living in the locked “ward” of an institution with about 40 other boys.  Twenty of them were profoundly disabled. But the other twenty were Luis’ peers.  I have often wondered, as I have watched Luis blossom over the years, what happened to those boys.

Luis got the life he’s gotten over the past two decades because of the personal approach that Family Focus takes.  When he was visiting those possible homes all those years ago, it wasn’t whatever staff member was on duty who drove him back and forth. We don’t work like that. It was me, the same person every single time.

The model that Family Focus has been working on developing over the past twenty-five years is not the model that other agencies that work with foster children use.  Family Focus is not a business whose particular “widget” is adoptive homes for foster kids.  Rather, we are a community of people – a community of like-minded people – who recognize that the foster kids who cannot go back to their original families, and then are not adopted by their foster parents, are a special group of  extremely betrayed kids.  And the services that they need, above all else, must always contribute to their healing. And that means personal connections of exactly the type we would want for our own kids. That’s what Luis got and that’s why Luis is where he is today: downstairs in his own apartment.

Family Focus has just celebrated its twenty-fifth anniversary. Keeping it alive and healthy for the next twenty-five, as the original staff move on into retirement is our primary goal.  And that requires a funding plan.  The traditional funding plan of fee-for-service is never sufficient, but for an agency like ours with creative and inventive services, sometimes decided upon very quickly, it is extraordinarily insufficient.

The alternative of finding permanent sponsors usually means looking to folks with big money.  But that is not only far more difficult than one might imagine, but generally folks with big money live in an entirely different world than do our kids, and the families who adopt them.  It is too often a cultural mismatch, causing difficulties on both ends.

So, what they – we – have decided to do is to look for regular people who “get” our kids and the need for the personal connections. We decided to create a “club” for these folks who will commit to supporting Family Focus to the tune of an automatic $25/month. Monthly, as another of my sons pointed out, it is not enough money to pay any other bill he has, but annually it can add up to enough money to support the agency’s creative work and pass it down to the upcoming generations.

The club is called the “Chocolate Milk Club” in recognition of the power of chocolate milk as an adoption metaphor for our population of kids: a real adoption can no more end than one can remove the chocolate from the milk, once combined.

We are proud of this club and we have high hopes for its long-term success.

I am writing about it on the blog for the obvious reason of looking for new members. But for the less obvious reason of the respect I have for the people who read this blog or even subscribe to it.  There is no reason to read it – and there have been 8,723 “hits” from 32 different countries on the blog from the time it started eighteen months ago until this morning – unless you are one of those who “get” it.  And if you do get it, the Chocolate Milk Club is a very real way for you to join in our work.  I am already writing monthly updates about that work to send to all our members. The links throughout this posting will give you more information. Otherwise, go to www.familyfocusadoption.org,  I will be reminding my readers of this club each posting: it’s that important.

Luis is only one of the four kids whom I have met, and adopted, because of and through Family Focus. Each has his own incredible story. But then doesn’t everybody?  Isn’t that the reason why it must always stay personal?  Doesn’t each one of us know that in our guts?

Please join us.




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Nothing Gets Between Us

It’s only in adoption, I think, where one’s oldest child is not always one’s first. I became an adoptive parent due to my experience with my son Ricky whom I met when he was eleven.  But, although I adopted all his brothers, I never adopted Ricky until he was way into his adulthood. I had helped get him into what I mistakenly thought was a wonderful institution in Miami, when he was about 14 or 15, and he never returned to live in New York. By 21, he was in prison down there and though we wrote and he called, I only saw him about once a year.

Before he went to Florida, he was in a number of institutions up here, including a psychiatric ward and a psychiatric hospital.  None helped him. I remember seeing him in those hospitals all drugged up and out of it. It was how they controlled his behavior.  I visited him wherever he was.  But none of us were giving him what he needed.

When Ricky was dying from AIDS in a prison hospital in Florida, in 1995, I flew down to visit him.  My visit was limited to an hour – maybe two, I can’t remember – on each of the two days I was allowed to see him (bureaucratic prison system). Ricky was in isolation, looking almost as bony as anyone coming out of the concentration camps ever did – he weighed, he told me, under 100 pounds.  He was very sick – they were worried about TB, as I remember – and though neither of us knew how close it was, he would be dead not six weeks later.

During the visit, looking back on his life, Ricky made the observation that I had “always been there” for him.  That was simply not true by any standard of “always been there” that other people, including me, would use.  I wasn’t there when he got out of Montanari’s (the place in Miami); I wasn’t there when he got arrested; I wasn’t there at his trial, etc. I was here – I was raising his brothers – I was working two jobs – I was busy.  I loved him; I’d always loved him; but I wasn’t there as I wished later I had been, or wished, at least, that I could have been.

But since I had met him twenty three years earlier, I had always been in his life; I had adopted all of his brothers; and when I ultimately woke up – he woke me up –  I adopted him also, although we finalized the adoption only eleven months before he died. He had always been mine, and I had always been his.   In the end that’s what constituted “always being there” to him.  I had hopes for Ricky. I felt his loss very much and I miss him still all these years later.

It all adds up to “family,” doesn’t it?

Last night, almost forty years after I met Ricky, I visited one of my grandkids – I won’t name him – who is himself currently in a psychiatric ward of a hospital.   His parents are nowhere to be found. When I walked into the ward, the staff advised me – in retrospect, it was a warning – that my grandson had just been “injected” due to some violence on his part. They put me in the dining room, where the visit would take place, and they went and got him. He came in with his own personal staff member. They call it one-to-one.  And as my grandson walked through the door, I was brought back in memory to two very sad places. The first was Ricky in the hospitals so medicated that he was out of it and could barely hold his head up, let alone talk. And the second was to the book, the off-Broadway play (that I saw over 20 times), and the movie: “One Flew Over The Cuckoo’s Nest.”

They had my grandson on some cocktail of injected drugs, including the infamous Thorazine.  Like Ricky, he couldn’t hold his head up. He could hear me, he could respond to me, but it was like talking to someone who has just come out of a very deep sleep, and was still exhausted. A zombie is not too far off as a description. I wondered if he’d even remember our conversation later.

I knew that I had to do two things that I had not done with Ricky: first, I had to reassure him over and over and over that he belongs to me, and I to him, and that nothing will get between us ever; and second, that what has happened to him in his life, that’s brought him to this point, no matter what he thinks, is not – absolutely not – his fault.  It never was. Those who know me, know that I often bring into my conversation whoever else is around, to make my points. The young guy who was on one-to-one was terrific, just terrific, in going with that flow. He allowed me to talk to him about the issues which allowed my grandson to hear without being obliged to respond. I was very grateful to that aide.

As the decades go by, I still keep thinking: what are we missing?  What are we not getting? What are we not giving these kids, who feel to me so incredibly – and deeply – trapped?  I remember Fr. Huntington telling me so very many years ago, that the older he got, the more he had come to believe that all the psychiatry and psychology in the world amounted to very little.  He told me that it was becoming clearer and clearer to him that it was simply – no matter how difficult – a matter of love.  Certainly, for me looking back, it was his love, and Aunt Rita’s, that saved me. The rest of it amounted to little compared to what they gave me.

Because what they gave me – and what seems to be missing, or more accurately blocked, for our kids – was me.  They gave me, me. 

I think that that is what Ricky was referring to in that prison hospital room.  Not that I had succeeded at it – he was, after all, in prison dying – but that that was what I had always been trying to give him.  Certainly, it’s what I knew I had to give my grandson last night.  What Fr. Huntington taught me in words, and Aunt Rita taught me in actions, is that one has to be given oneself through a person who chooses to love you.

And, I realized earlier this week, that most of choosing to love someone appears to be simply hanging on, no matter where they take you.

The difference between Ricky and me then vs. my grandson and me now?  I guess after all these years I am clearer.

Every person has to do their own work in saving themselves, I know that. But without having the context and the anchor of being loved by someone who is bigger than oneself (read: parent or parent substitute) what chance is there for anyone to do that? 

And, so again, my belief in, and trust of, adoption.  Because it allows for the parent-less to get real parents. I know it’s not enough, but it opens the road to enough.

As I told my grandson, and wished I had been so explicit with Ricky: “Nothing gets between us; no feeling, no behavior, no person. Nothing.”


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