A smoking gun or a stab in the dark?

We brought C. for her scheduled visit to a metabolic specialist this week.

He was a very atypical doctor in myriad ways. For starters, he spent over an hour with us, talking and listening. He was pleasant, sympathetic and complimentary of us and even of C. He said she is so beautiful. I don't recall another doctor ever telling us that.

He listened to us tell him C.'s medical history, read the reports we brought and had me spilling my guts much to the Hubby's chagrin. I volunteered the details of our Tragedy II about which I never blog because it would end my anonymity. Can't risk that.

He said that we've covered most bases treatment-wise and testing-wise. He approved of our use of cannabis and weaning off Rivotril. He noted that we've already done a slew of genetic and metabolic tests.

He mentioned the muscle biopsy which we passed on many years ago. Googling it now (something I couldn't do when it was suggested some 18 years ago), I learned that it's "an invasive and costly procedure"  in which "A small piece of muscle, usually the size of the end of our little finger is removed from the upper thigh of a patient for this testing...[which] leaves a scar several inches long.) The testing is complicated and takes many weeks to complete.

In any case, this doctor believes it's highly unlikely that C. has a metabolic disorder because her condition is not deteriorating.

We're left with the option of doing the full exome test which is currently beyond our means. Besides, this doctor thought that we may have actually found the genetic culprit in a test done two years ago. That test, the CMA, redisclosed that both C. and I have a duplication on Chomosome 17.  The geneticist dismissed it as irrelevant to C.'s disabilities because I have it too. But C. was also found in that test to have a deletion on Chomosome 2.  This metabolic doctor believes that either the two anomalies combined to make C. as ill as she is. Alternatively, the duplication alone, coupled with the "insult" she suffered (that's how he refers to her MMR vaccination and its aftermath), could be the cause of her nightmare.

Either way, he believes that therein lies, to quote him, "the smoking gun".

He'll be drawing up referrals for a few more tests in the hope that our health fund will foot the bill. He also promised to write to Nasty Neurologist who has "partial results" from the full exome that was done as part of a research study - results she didn't consider it our right to know because in her opinion, they "aren't significant".

He said he will approach NN in a non-confrontational way and even told us the lines he'll use. Somehow, I can't imagine him being confrontational even if he tried.

The photo I posted above is C. after her visit to the kind metabolic specialist.

Demonic? Or delusional?

FC equipment (from the NYTM article)

I hate to sound alarmist but the sane, intelligent and good people on our planet seem headed for extinction. 

And an article from The Sunday New York Times Magazine (October 25, 2015) reinforces that doomsday view. It’s entitled "The Strange Story of Anna Stubblefield". But "strange" doesn't come close to describing this case.

Anna Stubblefield was an associate professor and chair of the philosophy department at New Jersey’s Rutgers University. She is the daughter of  parents with PhD’s in special education, the wife of a symphony orchestra tuba player and the mother of two.

As of October 2, she is also a convicted felon. A jury found her guilty of two counts of first-degree aggravated sexual assault - the same charge that would apply to someone who had inflicted severe injury during a rape or participated in a violent gang rape.

Her victim, named in the report only as DJ, is a man in his thirties who is profoundly physically and cognitively impaired. His mother and legal guardian has testified that the now 34-year-old victim wears diapers and needs help to walk, bathe, get dressed and eat. His brother, a student of Stubblefield's, has testified that DJ does not speak aside from making sounds that could not be interpreted by experts and that he has the cognitive capacities of an 18 month old.

Stubblefield will be sentenced on November 9 and could spend up to 40 years in prison.

So, how did this bizarre case evolve?

Stubblefield had been practicing Facilitated Communication (or FC) with her victim for several years. Initially the relationship was one of researcher and subject. It progressed to one of research partners, friends and, according to Stubblefield, it culminated in one of lovers. Because, she claims, that through FC typing, the victim consented to sex with her as his facilitator.

"DJ was very happy with what was going on," she said in court. If he needed to say something, he would bang the floor, and she would pause to set him up with the keyboard. "It was a few hours from getting undressed to afterglow," she said. When they were finished, he typed "I feel alive for the first time in my life."

FC is a technique purporting to enable disabled people to type on a keyboard with the help of a facilitator who grips the typer's elbow, shoulder or hand – or two of those at once.

Proponents insist that the person with disabilities is typing independently. But in the early nineties, controlled experiments were conducted  in which typers were asked to name objects that their facilitators either could or couldn’t see. In almost every case, it was apparent that the messages that the subjects typed were not their own. It was concluded that FC was an elaborate display of the ideomotor effect, in which an external suggestion or a person’s beliefs or expectations trigger unconscious movement: The facilitator was guiding the typing, even if she didn’t know it.

The method was duly discredited by mainstream professionals. In 1994, the American Psychological Association (APA), the American Academy of Child and Adolescent Psychiatry, the American Speech-Language-Hearing Association and the International Society for Augmentative and Alternative Communication (ISAAC) all passed resolutions cautioning practitioners against the use of FC, citing the lack of scientific evidence. The APA also recommended that information obtained via FC should not be used to confirm or deny allegations of abuse or make diagnostic or treatment decisions. (There had already been many such claims litigated in court).

Testifying in the Stubblefield case, psychology professor James Todd said that

every "methodologically sound" study of facilitated communication has determined it to be an invalid means of communication. "It's become the single most scientifically discredited intervention in all of developmental disabilities," Todd said. ("Professor found guilty of sexually assaulting disabled man", October 2, 2015)

The judge in the case refused to allow expert testimony on the method because it is "not a recognized science".

Anna Stubblefield

Sixteen years ago, C. and I had our own FC encounter. I was then still receptive to any and every alternative treatment that was mentioned within my earshot. Any and every promise of delivery from the disaster that had befallen our C. had a good chance with me. There was no vetting, investigating or doubting.  So when an ex-friend of mine whose daughter had severe tuberous sclerosis, invited me to her home for a Facilitated Communication seance, I was there in a heartbeat.          .

For a fee from each of us, the facilitator "channeled" messages from our non-verbal children. This was the pre-tablet era, so the woman held a 4x5 inch alphabet card. She gripped each girl in turn by the elbow while their hands appeared to flit from letter to letter at lightening speed spelling out elaborate presentations. C. delivered a scathing, verbose diatribe about my losing my moral compass and immersing myself in materialism.

I was utterly blindsided. Of course, I didn’t doubt for an instant that the preachy malarkey had originated with facilitator. What I couldn't figure out was her motive in targeting me, a total stranger to her.

In any case, I was surprised to learn this week that that same patently fraudulent and long-debunked method is still in use by esteemed professionals.

The news site Inside Higher Ed has covered the story in an article entitled When Research Becomes Rape which I thought pithy and apt. But the commenters at the New York Times Magazine site also deserve a mention for analyzing the case from myriad perspectives. Several thought the punishment Stubblefield faces to be unfair. She is, after all, deranged, delusional and possibly unfit for trial.
Other commenters noted that FC is just one of innumerable snake-oil remedies peddled to a desperate group of people – the parents of children with severe disabilities.

And therein is the true tragedy of this story. I’ll sign my name to that.

Sunday stunner

I was perusing the web for some disability news to include in my latest rant about institutionalization, when I accidentally landed here.

If you thought that anybody devoting time and funds to children with disabilities must be sensitive and admirable, think again.

It seems there are plenty of folks who do just that but who are nonetheless bad. And if not truly bad, definitely misguided, dull and primitive.

You are probably wondering how one person can possess such incongruous traits so hang on to your seats before reading the article below:

BSO provides unique hunting experience for children with disabilities
October 14, 2015

PHOTO: Courtesy of the Bossier Sheriff's Office | Cameron Hollis (left), shot an 8-point buck Saturday and Reed Edwards (right) shot a doe. Both young men are grateful for the opportunity given to them by the Bossier Sheriff’s Office and the Dream Hunt Foundation.


Bossier [Louisiana] Sheriff Julian Whittington hosted two young hunters with disabilities from the Dream Hunt Foundation last Saturday in north Bossier Parish.  Dream Hunt Foundation is a Louisiana-based nonprofit organization that gives children with special needs or who are underprivileged the chance to go on a guided hunt.

Cameron Hollis and Reed Edwards, both 13, had successful hunts Saturday morning.  Hollis shot an 8-point buck and Edwards shot a doe.  Both young men were thankful for the opportunity given to them by the Bossier Sheriff’s Office and the Dream Hunt Foundation.

The Bossier Sheriff’s Office has hosted the Dream Hunt Foundation for several years now, and Sheriff Whittington, an avid hunter, is excited to work with such a great organization.

“It’s one of the best programs I’ve ever seen,” said Sheriff Whittington.  “These hunters dedicate their time to bring these young people out who otherwise would not be able to get up in a deer stand because of different difficulties they face,” he said.  “We’re giving them an opportunity to hunt.”

The Dream Hunt Foundation was founded in spring 2013 by Jeff Warren to make a difference in the lives of children with special medical needs.

Appetite re-appears

That niggling optimism is bubbling up again and I'm having a hard time suppressing it.

During three days last week, C. had an increase in seizures unrelated to fever. I even postponed her next Rivotril reduction by a day. But on the heels of all that came a surprising turnaround.

First, was the return of C's appetite which, for two months, has ranged from non-existent to barely sufficient. Now she shovels in the spoonfuls, without her frequent interruptions for sips of water. I've actually been refilling her bowl instead of refrigerating leftovers. And her assisted walking is as good as it ever gets.

There's nothing like a bout of regression to make you appreciate the minuscule blessings.

Now for the why: I'd like to attribute much of this turnaround to the fact that we've weaned C. off 78% of her Rivotril and, of course, she's still getting cannabis. That would mean the promise of further progress when we've eradicated that drug from her system. Time will tell.
 
This was also the week of the annual parent-teacher meeting. As in recent years I played hookie and relied on a report by my Hubby who dutifully attended.

It seems that the "powers that be" at school have decided that C. needs a head support because of all her backward head dropping (see the photo above).

Since C. has been doing this for nearly two decades and the sky has yet to fall, I don't get the danger we risk by leaving well enough alone. After she flings her head back, she always re-centers it independently within a split second. I'm loathe to restrain her any more than we already do.

If you have had any experience with this situation, I'd love to hear what your experts advised.

Rosemary redux

I suppose the tragedy of Rosemary Kennedy is still haunting me. I couldn't resist listening to her biographer, Kate Clifford Larson, interviewed  on a New York Times podcast.

Until this book, Rosemary had only been a peripheral character in every other Kennedy biography. In this interview, Larson relates many details omitted from the book review I blogged about.

For instance...

She describes various "treatments" that the cognitively-impaired Rosemary endured such as weekly hormone injections and strict weight reduction diets to remedy her "laziness". Of course, nothing was as cruel as the botched lobotomy which left her severely disabled. Larson says that, notwithstanding its dire consequences, Joe subsequently told the nuns caring for Rosemary that "her institutionalization was the answer to his and Rose's prayers."

Most of Rosemary's siblings did not see her again until the late sixties - over twenty years later - because that was their parents' express wish.

There are more disturbing revelations if you feel you can handle them, here.

These two photos - one pre-lobotomy, above, the second post - probably convey the tragedy as vividly as any words could.

Rosemary Kennedy with sister Eunice Kennedy Shriver (right) at
a Kennedy family reunion

A seamy side to the Kennedy legend

Rosemary Kennedy on the right, with with her younger sister Kathleen
and mother, Rose, ready to be presented in May 1938 at the British Royal Court.

On a more disheartening note, I read a NY Times book review that my son just sent me. Entitled, Rosemary, The Hidden Daughter, its author Kate Clifford Larson tells the tragic life story of the oldest daughter and third child of Joe and Rose Kennedy.

Rosemary's troubles began in utero.  Her mother's obstetrician was unavailable when she went into labor. The nurse attending the home birth instructed Rose to keep her legs closed in order to delay the baby's delivery until the doctor's arrival two hours later. During the wait, Rosemary was oxygen deprived.

I shuddered to read those lines because my own obstetrician was delayed for not one nor two but three of my deliveries. The midwives all gave me similar instructions to those Rose received, namely keep panting, don't push, and, whatever you do, don't let the baby out until the doctor arrives.

Fortunately, I wasn't too obedient, heeded my babies instead and pushed for all I was worth. The doctor was annoyed but I hardly cared. And after reading that as a child, Rosemary was developmentally delayed thanks to that lame-brained advice, I now care even less.

But Rosemary's real suffering began when she was a young woman, shortly after this beautiful photo of her (above) was taken.

Until the age of 23, her problem was that she was functioned cognitively as a 10 year old. But then her condition deteriorated. Previously placid, she began to have seizures, tantrums and erratic behavior. Concerned that his daughter  might embarrass the family and impede its political ambitions, (and after several attempted residential arrangements had failed), Joseph P. Kennedy subjected Rosemary to a lobotomy.  His wife was not informed of the surgery which had then been performed in the U.S. on only 80 patients, 80% of whom were women. 

Wikipedia provides gory details of that primitive, ruthless procedure, related by the surgeon-butcher himself. It was an undeniable failure.

Subsequently:

Sent to a private psychiatric institution in New York, then to a church-run facility in Wisconsin, Rosemary was abandoned by her parents. Joe appears to have stopped seeing her in 1948 although he was vigorous until 1961, when he suffered a catastrophic stroke. Rose, who blamed her husband for authorizing the lobotomy, couldn’t face her damaged child. “There is no record of Rose visiting her eldest daughter for more than 20 years,” Larson writes. In the early 1960s, when Rose finally did turn up, Rosemary reportedly recoiled. [NY Times]

For the rest of her life Rosemary's mental capabilities remained of a two year old, she was unable to walk, was incontinent and had mild physical disabilities. Moreover, the family's shocking view of disabilities cast an even wider net.  Writing to his father after a 1934 visit to Germany Joe Jr.

praised Hitler's :sterilization policy as "a great thing” that “will do away with many of the disgusting specimens of men.”  [NY Times]

To be fair, in recent years the family did attempt to re-embrace Rosemary and her siblings were at her side when she died at age 86, in 2005. Moreover, several relatives, including Rosemary's late sister Eunice Shriver, her late uncle Ted Kennedy and her nephew, Robert Kennedy Jr. have devoted much of their lives championing the rights of the disabled.

Still, while I feel I ought to read this book, I doubt I could stomach it.

Here's what a good day looks like

Today C. presented me with a wonderful gift.

First, she hardly seized.

Then she did her assisted MEDEK walking for an hour with an additional fifteen minutes of unassisted standing while leaning on her wheelchair back.

Usually she seizes after a mere 30-45 minutes of such exertion. Instead, when I sat her on the sofa to rest up afterward, she looked like this.

Next, for the icing on the cake, she fed herself a large meal.

And here's another sketch (below) I did of her yesterday.

We're still here

We are having some uneventful days;  hence the blog-silence.

The same old "central fevers" on most days with the same old seizures and twitches until the Advil kicks in. (Their severity depends on how high the fever is.)

On fever-free days, the seizure tally has been around two - almost a reason to party. Bear in mind that all this is happening while weaning off the benzo (Rivotril). We are now at such a low dose, I am beginning to see the light at the end of the tunnel. If we can continue to reduce at the current rate we should be off the the stuff in 2 months.

And it's no secret what high hopes I've got for the post-benzo era.

C.'s appetite is also somewhat improved. At times she puts the spoon into her mouth with her previous gusto. As for flesh on her protruding bones - well, that's still eluding us. It's a concern we plan to raise at our next doctor's appointment.

I aim for 45 minutes to one hour of assisted walking with C. every day, although there are the occasional hectic days when she's just shuttled between wheelchair and bed - and then the guilt has a field day with me.

After a hiatus from drawing lasting a couple of weeks due to family obligations, I finally managed to put pencil to paper. Here's a sketch of C. (above) minutes after waking up.

And on the left is a photo from a rare outing the Hubby and I made with C. two days ago.