Saturday, October 26, 2013

Today I Am A Horse.

"Today I am a horse. Dear God, did you have to make my poor old horse lose his shoe just before the Sabbath? That wasn't nice. It's enough you pick on me, Tevye, bless me with five daughters, a life of poverty. What have you got against my horse? Sometimes I think that when things are too quiet up there, You say to Yourself, `Let's see, what kind of mischief can I play on my friend Tevye?'" (Fiddler on the Roof," book by Joseph Stein and music by Jerry Bock, lyrics by Sheldon Harnick. Pocket Books, 1965, p. 23).

My wife of some twenty-seven plus years, bless her heart, has secondary progressive multiple sclerosis.  She is no longer able to walk, nor work, has difficulty at times speaking with fluidity and recalling words that she wants to say.  She is not in complete control of her bladder, and is frequently struck by the kind of fatigue that sneaks up on you, requiring you to find a nearby spot to lie down and take a nap.  These days, she spends a lot of time in her bed. 

Her disease has progressed over the years, a progression that was accelerated by a traumatic event and very stressful period in our lives: when our two young boys were taken away for almost ten months on allegations of child abuse, allegations that were ultimately dismissed by a court after an additional nine months had passed. 

I have documented that story in past Blogposts here.  That’s not my topic today.  Today, I am a horse. 
I’m feeling a little sorry for myself, and what’s worse, I’m also feeling a little guilty for feeling that way. 
I’m not the one with MS, and unlike Tevye, it’s not that my horse that has lost his shoe.  My distress is because this week, my wife’s live-in caregiver lost her ability to care for my wife, let alone take care of herself.  Something happened, and what happened caused me to have to take care of both of them, with a little help from my eldest son.  To add one more complexity, I not operating at 100% myself:  I’m a candidate for hip replacement surgery and am hobbling about with the pain that goes along with that condition.

Our caregiver only moved in two months ago, and since my job of the past five months[1] is more than thirty miles from home, I really needed someone to be home with my wife while I was at work.  Because our eldest son lives and sometimes works nearby, he had been able to come by to rescue his mom on a couple of occasions -- when she’d ended up on the bedroom floor after unsuccessful attempts to transfer back to bed from her bedside commode.  On a few of other occasions, she’d had to grab a blanket and pillows from the bed and make herself as comfortable as possible on the rug until I could get home to assist her.

On Monday, our caregiver began to experience an attack of Hemiplegic Migraine, a condition that was first diagnosed by a neurologist some fourteen years ago.  She suspected that the attack was brought on by the stress of a bad experience at a county medical clinic that morning, where she was supposed to have seen a doctor about getting some prescriptions renewed, but at which things had gone awry.  As the day progressed her condition worsened, so much so that late in the afternoon my wife called to ask me to come home earlier than usual to take our caregiver to the Emergency Room. 

When I got home and walked into our bedroom, I found my wife and our caregiver in our room.  Our caregiver was lying on her side on my half of the bed, her right hand covering her eyes, in obvious discomfort.  Her left arm was paralyzed and it lay limp at her side.  I helped her get up, and she barely made it to the car, as her legs were in tremor.  Her eyesight was very poor; she was hypersensitive to sound; she was dizzy and nauseous, and it looked to me like she was having a stroke.  But she insisted that that was not the case.  She said that the last time she had experienced an episode of Hemiplegic Migraine was a few years ago, possibly triggered by a head injury sustained in a car accident.

I pulled up to the entrance of the Emergency Room at about 8:30 pm, went inside and requested a wheelchair.  An attendant brought one out and we managed to get our caregiver out of the car and into the chair.  The attendant asked what was happening, and she told the attendant the name of her condition: Hemiplegic Migraine.  She was wheeled inside, and by the time I moved my car and went back in, she had already been taken to Triage.  Like I said, it looked like a stroke, so they didn’t waste any time.

After a few minutes, they let me in and I was directed to Bed #1.  I stood out of the way of everyone and watched as a nurse administered a neurological screening exam.  The Emergency Physician had already seen her and ordered a CT scan.  They were monitoring her vitals, she had an IV through which she had already received pain medication and they were about to give her some more.  Unable to move her left arm, both of her legs were in tremor, and the overhead light and loud voices were very uncomfortable for her.  She thought that she might have to vomit.

I asked if they could turn off the overhead light and they did, utilizing indirect lighting.  An x-ray tech came in to take a chest x-ray while she was in bed, during which I left the room.  When I went back in, she told me that she had felt dehydrated earlier in the day, and asked the nurse if she could have some ice chips.  Because of her nausea, though, they gave her swabs to put in her mouth instead.

After the second dose of pain medication, she began to itch, so they gave her some Benadryl for that.

When she was about to go for the CT scan, she commented to me that it the results of the scan would probably be negative, as they had been during previous episodes.  I asked the nurse how long it might take for Radiology to provide the results of the CT scan: probably about thirty minutes.  I continued to wait, asking our caregiver a few questions and getting a few answers, although it was not easy for her to talk or to compose her thoughts.  She did tell me this:  most of the people who treated her for these episodes in the past as well as on this occasion were not familiar with Hemiplegic Migraine; she asked them if they would look it up, as it was rare and the diagnosis fourteen years earlier had taken quite some time.  She told me that she had experienced less than a handful of episodes of the condition since that first diagnosis.  The most recent episode, the one after the car accident, had resulted in her being hospitalized for about a week. 

I called home to speak with my wife, who was hungry for dinner, so I decided to make a quick trip home.   I heated up some leftovers for each of us, then returned to the ER.  The CT results had just come in and our caregiver/patient was right: they were negative.  The decision was made to admit her, and a room was readied.  At about 11:30pm, I accompanied her as they wheeled her up to her room.

Waiting in the hallway while the attendants got her settled, I went back into her room to ask if there was anything I could bring for her from home, but she was pretty out of it and asked if I could call in the morning.  I wished her well and left for the night. 

Just before I went to sleep, I did a GOOGLE search on Hemiplegic Migraine, got several hits, and read one article.  The term was well documented.  

After getting ready for work the next morning, I gave my wife breakfast, and packed her lunch and snack in our Ben & Jerry’s cooler, which I left on our bed for her.  I fed the dogs and called the hospital to see what I could bring for our caregiver.  She only wanted a few items, so I collected them, packed my own lunch and left the house.

It took me about twenty minutes to get to the hospital.  While walking from the parking lot toward the main entrance, I noticed a tall man approaching the entrance from the opposite side of the driveway, and as he walked, he was talking on his cell phone and putting on his white coat.  It turned out that he was the neurologist on his way to visit our caregiver/patient, so I introduced myself and we rode the elevator together.  I told him what she’d told me about her history, as well as the name of the neurologist who had diagnosed her migraine variant fourteen years before.

I watched as he administered a neurology screening exam, during which our caregiver/patient mentioned that she had tried to get in to see a local neurologist, one who had seen her in the past, and she told him the other neurologist’s name.  Unfortunately, that neurologist was no longer accepting new patients.  But she was in luck, he replied, because her former neurologist was now on staff with that same hospital.  I left the room for a few minutes so they could speak privately.  When he left, I went back in and she told me that she thought that she was going to be discharged.  That frightened her, because on a past occasion, the tremors she was experiencing had progressed into convulsions and she didn’t want that to happen again.  

A few minutes later, another doctor, a hospitalist, came in and spoke with her.  I mentioned to the hospitalist that it would be most helpful if she could speak with the caregiver/patient’s former neurologist who was now on staff, asking about our caregiver’s history.  She said that she would do so, and I left for work.

I spoke with my wife during the day, neither of us knowing what we should do.  On my way home from work, I was at a market picking up some fruit and vegetables when my phone rang.  It was our caregiver.  The hospital was discharging her and she asked if I could come pick her up.  I asked her about her condition, and she said that it was much the same.  I told her that I would be there in an hour. 

I arrived a few minutes early and went up to her room.  She told me that the hospitalist had been very dismissive of her condition.  She’d told our caregiver that she thought her symptoms were psychosomatic, and that there was nothing further that could be done for her neurologically in the hospital.  An attendant wheeled her outside in a wheelchair and I took her home.  The hospital did issue her a prescription for some pain medication to fill at an outside pharmacy.  She was just going to have to ride out the rest of the episode on her own at home.

In that condition, she was of no use as a caregiver to my wife or of any assistance to me as backup.  We were going to have to ride it out, too.  She could barely able to get up and walk to the bathroom, but at least she could do that much. 

On Wednesday night, I fixed dinner for my wife and asked our caregiver if she would like some of what I had prepared.  She accepted it and I took that as a good sign.

The following morning, I had her prescription filled for her.  By Thursday evening, she had some limited use of her left arm and she was slowly improving.  I expected that it would take some time for her to recover from this episode.  We have not been able to talk much yet, as she was not really capable of doing so. 
I hope that by Saturday afternoon, we will be able to have a conversation, and I have invited our eldest son to join us.  My wife is convinced that our caregiver will not be able to provide her with the care she needs.  She may well be right.  I need help.  I cannot possibly shoulder the load I’ve had to carry this week for very long.

As Tevye would likely say, “It isn’t easy.”

[1] In November, 2011, I lost my job of the previous six and one-half years in a massive lay-off affecting 175 people.  Since that time, I have found only temporary employment and have had two extended periods of unemployment.  Thus, I have been my wife’s full-time caregiver for the lion’s share of the past two years.  In May of this year, I obtained my most recent temporary position, one that holds promise of becoming a full-time salaried job.  Thus, I was very glad when two months ago, we found a day-time caregiver for my wife.  When this week’s episode took place, however, I found it very demoralizing. Enough with the celestial mischief, already.  

Tuesday, November 23, 2010

Criticism of LA Times' Series on Foster Care; the Agency Leadership and the Federal Funding Scheme

The Los Angeles Times has recently published a series of articles by reporter Garrett Therolf on child protecive services highlighting some of the cases with horrible outcomes that resulted from allowing children "known to the system" to remain in their homes vs. placing them in foster care. 

The nature of the reporting came under fire from several critics, including Daniel Hempel of Fostering Media Connections, Celeste Fremon of the Blog WitnessLA, and Richard Wexler of the National Coalition of Child Protection Reform.  Times' Assistant Managing Editor, David Lauter's response to that criticism appeared on the Times' Readers' Representative web page, and Lauter's response generated additional criticism as well as several reader comments.

One reader's comment began with "I don't know what this fuss is about...", which I took personally.  Thinking about these cases in the abstract is so far removed from the visceral, real-life experince of being a cast member in the actual drama. 

As a result, I posted the following comment on the Blog, which you can find at

Thank you, William, for wondering what all the fuss is about.

Here's what it's about for me: in April of 1999, my wife and I had our two sons taken from their elementary school one afternoon. They were first placed into a group home and then into foster care. It never should have happened.

I very much appreciate the incisiveness of the criticism -- much deserved -- leveled by Mssrs. Heimpel and Wexler against the Times' reporting in the recent series of articles by Mr. Therolf. Celeste Fremon is correct when she identifies the straw man arguments constructed by David Lauter in his response. I hope that Mr. Lauter will get past them, make his way into a more forthright self-examination of the Times' reportage and continue this very important conversation.

The underlying fuss, beyond the reportage, is about a curious system of financial incentive/disincentive, imposed upon counties by federal policy that reimburses counties ONLY for the costs of out-of-home placement of children, even though other alternatives may be more effective, less costly and most importantly, less damaging and traumatic for children and families.

Presently Los Angeles County, along with Alameda County and the State of Florida, have been granted waivers from compliance with that federal policy, and are able to use federal reimbursement dollars in the best interests of child welfare. That waiver is making a very positive difference in Florida outcomes, and under the right child welfare agency leadership, it can do the same in Los Angeles County.

Though we were lucky in the foster care department (incredibly supportive family friends volunteered and were approved to act as our sons' foster parents, although we were not allowed contact with them absent a monitor for many months), our children, my wife, who has multiple sclerosis and whose condition worsened considerably under the stress of the separation, and I endured much emotional trauma. Our family nightmare, which took place in Orange and not LA County, ended when we were reunited ten and one-half months after that horrible day in April, 2009.

Our lives were forever changed -- and not in a good way -- because of an institutional bias toward removing children from their homes that prevails in most places in this country under the current child welfare funding scheme. Far too many families experience similar treatment. THAT's what the fuss is all about.

Yes, child abuse and neglect are real. And yes, child protective services are a necessary thing. However, they need not be the necessary evil which they far too often are. If we are going to provide those services, let's fund them in ways that eliminate institutional bias, give children what is best for their welfare, help deserving families that need help, and improve outcomes, both social and fiscal. Let's get child protection right.
 *     *     *     *     *     * 
This is just one small step forward toward reform, a step toward the elimination of the institutional bias in favor of removing children from their homes resulting from the Federal funding scheme.  Each case needs to be viewed individually, and all options in the best interest of the child's welfare -- and the family -- need to be considered without any financial incentive or disincentive toward any such option.  That would be one more way of getting child protection right.

Reasonable Efforts: Preview "Criticism of LA Times' Series on Foster Care; the Agency Leadership and the Federal Funding Scheme"

Reasonable Efforts: Preview "Criticism of LA Times' Series on Foster Care; the Agency Leadership and the Federal Funding Scheme"

Tuesday, July 27, 2010

Response to my letter to Bill Clinton

I have today received a letter of reply to the letter I sent to Bill Clinton and posted here on May 28, 2010.  I have edited that post by appending the text of the former President's letter at its end.

Since the entire point of my letter was completely missed, I think perhaps I'll write again.  I must admit, however, that I'm pretty disappointed in the lack of a quality response.  The reply letter offers no evidence that my letter was read by anyone with even a thimblefull of critical thinking skills.

It's sad.

Saturday, July 17, 2010

It's time to plan for action. Collective action.

A little more than a year ago, I set up a Facebook account and started a cause on Facebook called "Getting Child Protection Right."  Over the intervening months, almost four hundred Facebook users from the US and abroad have joined that cause.  Some of those have made contributions to the cause's dedicated non-profit organization -- the National Coalition for Child Protection Reform ,  an organization that has done more than any other I have found to influence policy makers in a position to effect positive change to a system that, while well-meaning, often does far more to harm children and families than to help them.  That certainly was my family's experience.

Today I sent out an email bulletin to all of the members of the cause, asking them what individual actions they have taken or thought about taking in order to change things for the better. I realize, of course, that some of those who have joined the cause are just now newly involved in "the system" and may only be thinking about how to get their children back home and how to end their involvement in it.

Nonetheless, I think that it is important for all of us, those whose involvement is in the past and those presently in the system, to put on our thinking caps and come up with a collective plan of action.  Commitment to such a plan can only help to move us all from a position of powerlessness into one of strength.

I have asked for ideas and have proposed one myself.  Now I must pause and be patient, await responses and then figure out how to respond to them.  In the meantime, I shall continue to formulate my own ideas, which presently range from how to provide better and more comprehensive investigation, how to enhance real due process in dependency court, how to increase the availability of in-home, wrap-around services to keep children from being needlessly removed from their own homes, and how to make the entire process more transparent and honest.

The research and papers published on the NCCPR website are among the most helpful I can imagine.  So as a first collective action, I have proposed that every member of Getting Child Protection Right contribute one dollar or whatever they can afford to that organization on the day that we grow to 400 members, and I plan to propose that we do the same each time we acquire 100 new members, thus increasing our contribution by $100 each time we hit that milestone in growth.

I know that we can do more, but this is a start.


Friday, May 28, 2010

What hath the Adoption and Safe Families Act wrought? A Letter to Bill Clinton.

President William J. Clinton
c/o William J. Clinton Foundation
55 West 125th Street
New York, NY 10027

May 27, 2010

Dear President Clinton:

I am the father of two sons, Rudy, 21, and Jonah, 19, both college students. My wife, Jacqui, and I have been married for almost 24 years. She has secondary progressive multiple sclerosis, and I am her primary caregiver.

I write to you today on behalf of other families, though; families who currently are and who in the future will be adversely affected by the policies launched with the passage of the Adoption and Safe Families Act (ASFA).

In April 1999, our local Child Protective Services agency removed Rudy and Jonah from our home on groundless suspicions. After ten months of dependency court hearings and prompt compliance with every aspect of the case plan imposed upon us, we were reunited on a “trial visit” basis. After another eight months, the dependency court case was finally dismissed.

The emotional stress of that nearly two-year experience accelerated the progression of Jacqui’s MS, and her disability increased considerably. My own stresses cost me a job.

But none of that is my reason for writing you today. Instead, I want to tell you that, building on the policy foundation established by ASFA, South Carolina has passed a new law, the signing ceremony for which took place on Tuesday last. Under that law, holding children in foster care for just six months will become grounds to terminate parental rights forever. After 18 months, the new law requires termination of parental rights, no ifs, ands or buts.

Because of the instrumental role you played with ASFA, it is very important that you know what is happening now. The policy of financial incentives from the Federal government to the states birthed by the passage of ASFA has become a malignancy, one threatening the well-being of American families.

Please read the May 27, 2010, entry on the National Coalition for Child Protection Reform’s (NCCPR) Blog . I beseech you to use the power of your foundation to help reverse the harmful policies resulting from ASFA.

I am more than happy to discuss this idea with you, and I have no doubt that Richard Wexler, Executive Director of the NCCPR would be as well.

I also hope that you also read the new report of the Annie E. Casey Foundation on the reforms made in the Maine Child Protective Services bureaucracy. That report can be found at

Thank you for reading this. I hope that you will use the resources of your Foundation to remedy the harm done by a law that was supposed to help, not harm, families and children.

Very truly yours,

Steven H Hirsch

Update:  July 27, 2010

Today I received the following letter of reply from Bill Clinton:
"July 22, 2010

Dear Steven:

Thank you for taking the time to share your thoughts with me.

Our children are the future, and protecting them is our most profound responsibility.  The goal of the Adoption and Safe Families Act was to give every child the opportunity to grow up in a healthy and safe environment, with the potential to become strong, successful adults.  Throughout my Administration, we tried to increase the number of adoptions from the foster care system by eliminating race and ethicity barriers, breaking down geographic barriers by using the Internet, and ensuring health coverage for adopted children with special needs.

I'm glad you share my belief in the importrance of advocating for children's safety.  It's vital that we talk about the issues that are important to us, so I encourage you to continue to share your views.


/s/ Bill Clinton"

So, since the entire point of my letter was missed, shall I take the time to write once more? 

Tuesday, December 22, 2009

Es su CASA mi CASA? I don't think so; at least it wasn't in our case.

Today I saw that  friend of mine had become a fan of the Facebook Cause that supports the National Court Appointed Special Advocate (CASA) program.  On the National CASA web page I found this quote:  "The joy of being involved as a voice for a child needing a safe and permanent home or helping a family to regenerate and become parents  is like Christmas every time!"—CASA volunteer Freddy W. Baugh writing on National CASA’s Facebook page.  (Italics added)

As a parent who, to this day, still feels very victimized by my family's experience ten years ago in what I can only describe as the meatgrinder of the Child Protective Services - Dependency Court system in Orange County, California, I initially bristled at reading that information.  Not because my friend did anything to intentionally hurt me, because he certainly did not.  I am sure that he is just trying to do something positive for the world and for children. 

My reaction is partly frustration that I still do not know what more I can do other than drumming up support for a wonderfully effective organization, The National Coalition for Child Protection Reform, , through my own Facebook Cause, "Getting Child Protection Right".  And it's also partly frustration and, yes, resentment, that despite the presence of a CASA volunteer in our courtroom, no one from CASA ever spoke to me or to my wife.  I wish they had.

Looking at the phrase above, "helping a family to regenerate and become parents", presupposes that a family has stopped being a family and parents have stopped being parents.  But how does that happen?  In our case, it happened because no one in the system bothered to investigate us in any depth prior to taking action to separate parents from children.  It happened becuase there is no CASA that is there for parents.  Oh, of course there is an attorney, but our attorney (or, in our case, attorneys, plural, because of a potential legal conflict of interest between my wife and myself, despite no REAL conflict) were not able to get the court to really see how unbelievably we parents were being mistreated by the system until a hearing that took place some nine months from the time our boys were taken into custody.  NINE MONTHS.  Do you know what effect nine months of nights away from our kids did to the course of my wife's multiple sclerosis?

I feel the pain of parents who write to me through "Getting Child Protection Right".  Their pain is my pain.  No doubt they could use a CASA, too.

I think I'll share this blog entry with my friend.  I think he'll understand.