DC - Justina gets standing ovation from Congress

i.b.nora

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This new article in The West Hartford News:

Justina Pelletier to 'sparkle' at upcoming homecoming celebration

West Hartford News
Published: Wednesday, July 23, 2014
By Kathleen Schassler


"WEST HARTFORD>> Justina Pelletier recently invited her 50,000 closest Facebook friends to a "Sparkling Homecoming Party" on Aug. 17."​

Most of this long article is about the coming party and how Jennifer is the hard working and driving force behind it. The article is clearly written for and aimed at the West Hartford community (especially businesses) and is very sympathetic to the Pelletier family. It's kind of like a Chamber of Commerce piece, and not heavy duty hard hitting journalism. An interesting bit about Justina's first pair of high heeled shoes and Justina's mother's possible reaction caught my attention.

Also at the end of the article, I found this interesting as I had not seen the report by The Hartford Courant and was pleased to hear that BCH did indeed make a statement regarding the allegation of "research" on Justina.

"Rob Graham, spokesman for Boston Children's Hospital, denied that the hospital conducted research on Justina. In a written statement reported by The Hartford Courant, Graham said that the "allegations that research was conducted on the patient are baseless and patently false.""​

With all the publicity about the upcoming party and where and when it is, I would hope that the Pelletiers will think to hire a guard to protect their home and property while they are away at the party.
 

gitana1

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You know (re comment #5), I'm thinking this weirdness goes way beyond party lines. I'm right-wing but I think her family's actions and responses as reported have been increasingly batty over time...and the father's behavior at times downright belligerant.

The facts are, this child was finally released to her parents and the care of her former doctor with the stipulation that BCH's recommendations for her psychological care be merged with those physical recommendations of her mitochondrial doc. In other words, the judge decided that BOTH medical opinions were relevant to this child's case.

I have a lot of strong opinions on this story. Confession...I've worked professionally in figure skating (my various professions/avocations make up my moniker), and have a bit of insight into the the stresses that can come with the discipline. I have seen the tape of her skating, and personally think her skill/involvement in that sport has been overblown. I know intimately the psychological strengths/weaknesses affecting some gals who are attracted to figure skating; I know the extreme psychological pressure involved in skating performance. I also know the good and the bad about "skating parents," and the often overly perfectionistic, performance-oriented family dynamic that can skew that first love into a thing of major stress and anxiety for their child. All this to say...IMO, the idea that this child might have had a psychological reaction (eg.'conversion disorder' or something similar) after that taped Christmas performance in order to be relieved of the stress of living up to her bigger-than-life father's expectations is not beyond the realm of possibility. JMO.

Excuse the lingo; have more than one professional pysch person in my immediate family...and not without reason, come to think of it. :crazy:

That's an interesting point of view. I mean, you're making a lot if assumptions to get to the conclusion but it's certainly possible and does seem like it would fit in this case.

Do you a link to video of her skating? All I could find was video of one of her sisters which I admit was far less than impressive, especially with a skate teacher for a mom.

However, if no one in the family was a star or even remotely
close, why would she feel such pressure?

That article states that her symptoms had been going on "for a couple months" before being wheeled in to the hospital in March. That her friends hadn't heard from her (school and skating chums). I'd be interested in knowing if she skated after that Christmas performance. Also what her parents, friends, or coach might have said to her concerning it.

Skaters, like dancers, are at high risk for a variety of somataform disorders.

Can you link to support for that last statement? I would think maybe professional, competitive athletes are at risk for more mental health issues in general. But not specifically any or all dancers or skaters and specifically somatoform. Enlighten me! I'm always up for learning from those who know more. I'm interested in psychology but it's not my thing.
 

gitana1

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This new article in The West Hartford News:

Justina Pelletier to 'sparkle' at upcoming homecoming celebration

West Hartford News
Published: Wednesday, July 23, 2014
By Kathleen Schassler

"WEST HARTFORD>> Justina Pelletier recently invited her 50,000 closest Facebook friends to a "Sparkling Homecoming Party" on Aug. 17."​

Most of this long article is about the coming party and how Jennifer is the hard working and driving force behind it. The article is clearly written for and aimed at the West Hartford community (especially businesses) and is very sympathetic to the Pelletier family. It's kind of like a Chamber of Commerce piece, and not heavy duty hard hitting journalism. An interesting bit about Justina's first pair of high heeled shoes and Justina's mother's possible reaction caught my attention.

Also at the end of the article, I found this interesting as I had not seen the report by The Hartford Courant and was pleased to hear that BCH did indeed make a statement regarding the allegation of "research" on Justina.
"Rob Graham, spokesman for Boston Children's Hospital, denied that the hospital conducted research on Justina. In a written statement reported by The Hartford Courant, Graham said that the "allegations that research was conducted on the patient are baseless and patently false.""​

With all the publicity about the upcoming party and where and when it is, I would hope that the Pelletiers will think to hire a guard to protect their home and property while they are away at the party.

Can you link to the article? Thanks!
 

K_Z

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First pair of high heeled shoes?

Is she wearing them standing up and walking, or still reported by her parents to be "paralyzed" in a wheel chair?
 

K_Z

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I don't for a minute believe this teen is paralyzed in any fashion, or a paraplegic. She might be weak or have balance problems, or complaints of pain in her legs, but she does not appear to have lower body paralysis, despite the claims of her father.

At the time of discharge from BCH, she would have had various positional braces to prevent contractures and foot drop, visible muscle wasting, and an adaptive wheelchair by now, if she were genuinely paralyzed.
 

PoirotryInMotion

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That's an interesting point of view. I mean, you're making a lot if assumptions to get to the conclusion but it's certainly possible and does seem like it would fit in this case.

Do you a link to video of her skating? All I could find was video of one of her sisters which I admit was far less than impressive, especially with a skate teacher for a mom.

However, if no one in the family was a star or even remotely
close, why would she feel such pressure?

Hi Gitana1--just saw your post. To try to answer...the pressure comes from within and is not necessarily related to the ability level of the child. The inner perfectionistic urging or 'voices' (attitudes) that propel are those gradually absorbed and owned by the child over the years from the external voices (sometimes parents, sometimes coaches, sometimes peers, sometimes a combination of several). The research varies slightly, but generally speaking, these kinds of kids are usually compliant 'pleasers' who have adopted perfectionistic standards and can be as hard on themselves as the grownups around them. From what I've read (and this is just MOO), Justina's parents are intense, reactive, somewhat domineering and controlling. This is the typical scenario that produces a compliant, perfectionistic child who will do anything to avoid the ballistic parental reaction if they sense they are falling short of their parents' standard of perfection.

I'll look for the skating video link and post it below if I find it again.


Can you link to support for that last statement? I would think maybe professional, competitive athletes are at risk for more mental health issues in general. But not specifically any or all dancers or skaters and specifically somatoform. Enlighten me! I'm always up for learning from those who know more. I'm interested in psychology but it's not my thing.

Well, for background, here’s just a basic Wiki overview about what all falls under this broad category of Somatic Disorder (now preferably called Somatic Symptom Disorders):

Somatic symptom disorders are actually a group of disorders, all of which fit the definition of physical symptoms that mimic physical disease or injury for which there is no identifiable physical cause; as such, they are a diagnosis of exclusion. They are recognized by the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association as the following:[4]
• Conversion disorder: A somatic symptom disorder involving the actual loss of bodily function such as blindness, paralysis, and numbness due to excessive anxiety
• Somatization disorder: A disorder characterized by multiple physical complaints which do not have a medical explanation.[7]
• Hypochondriasis: A somatic symptom disorder involving persistent and excessive worry about developing a serious illness. This disorder has recently gone under review and has been altered into three different classifications.[citation needed]
• Body dysmorphic disorder: wherein the afflicted individual is concerned with body image, and is manifested as excessive concern about and preoccupation with a perceived defect of their physical appearance.
• Pain disorder
• Undifferentiated somatic symptom disorder – only one unexplained symptom is required for at least 6 months.
Included among these disorders are false pregnancy, psychogenic urinary retention, and mass psychogenic illness (so-called mass hysteria).
• Somatoform disorder Not Otherwise Specified (NOS)[8]
The ICD-10 classifies conversion disorder as a dissociative disorder.

The one in blue is the one that sounds similar to what Justina might be experiencing. Of all these types, the one in red (Body Dysmorphic Disorder, which can lead to eating disorders) has long been considered prevalent in sports that are highly competitive, artistic, and aesthetic—primarily ballet/dance, figure-skating, and gymnastics. Coaches historically have stressed strict diet along with physical training in elite athletes in these fields...and there is an increased risk for these athletes to develop anorexia, bulimia, and other combinations of eating disorders that derive from disordered body image. The rigorous training combined with restricted diets in leanness-oriented sports can often delay menarche in elite athletes, and eating disorders often hit these kids during early adolescence as they seek to control their body’s natural inclination to add weight and curves. And this can happen not just with the 'elite' athletes, but the ones that take what they do extraordinarily seriously, regardless of expertise.

There is a LOT of research in the field (psych and sports psych, books, articles etc.) and you've probably read some of it. A lot of this research focuses on elite athletes--but EDs can happen to any girl who takes her self, life, and/or sport seriously (regardless of level of ability). Here are a few more links (I’ve tried to just list PDF online or books you can maybe locate since most people don’t have memberships to some of these psych journals):

1) “Eating disorders continue to be on the rise among athletes, especially those involved in sports that place great emphasis on the athlete to be thin. Sports such as gymnastics, figure skating, dancing and synchronized swimming have a higher percentage of athletes with eating disorders, than sports such as basketball, skiing and volleyball. According to a 1992 American College of Sports Medicine study, eating disorders affected 62 percent of females in sports like figure skating and gymnastics.”

See more at: http://www.mirror-mirror.org/athlete.htm#sthash.zHriCN1I.dpuf

2) “The prevalence of EDs is higher in athletes than in con-
trols, higher in female athletes than in male athletes, and more
common among those competing in leanness-dependent and
weight-dependent sports than in other sports.”
http://byttpassord.nih.no/documents...etes is higher than in general population.pdf

3) [PDF] Risk and trigger factors for the development of eating disorders in female elite athletes
http://general.utpb.edu/FAC/eldridge_j/KINE6362/Readings/Unit5_2.pdf

4) http://scholar.google.com/scholar?q=skaters+AND+"eating+disorders"&btnG=&hl=en&as_sdt=0,44
saintfrancis.com [PDF]
[PDF] Athletes and eating disorders: the National Collegiate Athletic Association study

5) Eating disorders in sport
TA Petrie, CA Greenleaf - Handbook of sport psychology, 2007 - books.google.com
... Although not substantial in quan- tity, we highlight the research that has been conducted on single
sports, in particular gymnastics, figure skating, and wrestling. The prevalence of eating disorders
among female gym- nasts and figure skaters seems to be relatively high (Dick ...
Cited by 114 Related articles

6) Nutritional status of female athletes with subclinical eating disorders
KA Beals, MM Manore - Journal of the American Dietetic Association, 1998 - Elsevier
... female athletes, particularly those who participate in sports that emphasize leanness (eg,
gymnastics, distance running, diving, figure skating, and classical ... have examined the dietary
intakes of female athletes who have or are at risk for clinical eating disorders report extremely ...
Cited by 103 Related articles

7) http://www.cignabehavioral.com/web/...atingDisorders/athletesAndEatingDisorders.pdf
 

i.b.nora

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Looking around for a source for the only video I have ever seen of Justina skating, haven't located it yet but happened upon this Boston Globe article which I had previously missed at the time Justina went home.

After 16-month battle, Justina Pelletier returns home
Father vows to continue fight for family rights
The Boston Globe
By Zachary T. Sampson | GLOBE CORRESPONDENT JUNE 19, 2014


"Justina rode home with a pink blanket and polka-dotted pillow in her mother’s car. Before she left Thompson, she smiled and waved, saying it was awesome to see her parents again.

The first thing Justina planned to focus on when she got home, she said, was “my family.”

Jennifer said Justina would probably have to catch up on television shows, too, including her favorite: “Dance Moms.”

After Justina had returned, Lou Pelletier reflected on the raft of ice skating medals, more than he can count, that reside in his daughter’s room.

“She was a very active girl, and now as you saw me picking her up, she’s going to have a long way to go before she’s ice skating again,” he said. “But you know what? She will ice skate again.”

The Pelletiers said they are focused on helping Justina regain her health.

Linda Pelletier said she plans to enroll her daughter in pool therapy. “There’s going to be a lot of rehabbing with her, and hopefully she can walk again,” Linda said.

Jennifer Pelletier said she would like to teach her sister to skate again, but now Justina has no muscle strength and is “like a rag doll.”​

Notice that Lou doesn't say that the 'raft of medals' actually belong to or were won by Justina, nor does he mention that Justina shares a bedroom with her next older sister who has also participated and competed in ice skating and in dance events (as per other interviews the family has given) and I assume she might also display her medals and trophies.
 

PoirotryInMotion

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Concerning medals, skaters generally compete with age-related peers at their particular level of skating. So a raft of medals in a child's bedroom, while certainly wonderful in that the child is setting and achieving personal goals, doesn't really lend the average person an idea as to the degree of talent and expertise of a particular child in that sport, more just how they compare with others their age at that level and in that locale.

Not only that, but there are two different types of skating competitions that skaters can compete in to receive ribbons and medals--recreational skating competitions (organized by the International Skating Institute of America--used to be called ISIA though I think it dropped one of those initials--the A-- recently) and USFSA (organized by the United States Figure Skating Association). Competitions put on by the USFSA are more competitive, whereas ISI competition is generally more for those taking skating lessons and testing in recreational skating classes. In other words, ISI competitions would generally be the first types of competitions kids enter. USFSA testing and competition is more stringent in many ways. A skater has to pass certain test level requirements put out by whichever organization in order to compete at a certain level. Justina has perhaps participated in both if she's skated for more than a couple years, but just thought I should mention the multiple competitions.

ETA: The only video I've found so far online is one by sister Jennifer on Youtube of her program at an ISI competition at their local rink (the recreational level organization.):

http://www.youtube.com/watch?v=AyWtDUKh82w

Jennifer is competing at 'adult level platinum'-- though I don't see that level of performance at its best with this video. She does some single jumps, spins, two-foot lands a couple double-jump attempts, and while skating admirably for an adult (hey, it's hard moving these adult bodies on ice!), I would say this represents hard work more than natural talent. She has very good stamina (to do any program takes a lot of wind); good extension on her spirals, and camel spin and footwork is decent as well. From what I remember of Justina's skating, Jennifer's carriage is also better (but she's not at that awkward age, anymore.) Jennifer's spins in this video travel and her flying sit needs more flight as well as more 'sit.' Her jumps are typically adult-cautious, with several 2-foot landings (you're supposed to land on right foot only). Not saying this to criticize, because I especially admire any adult who puts herself out there, and this level does represent significant stamina, determination, and hard work. Just saying this to illustrate the type of skating Justina and her sister are involved in (I can't find the video I saw earlier of Justina). The video clip I saw was either another ISI performance or some sort of Christmas 'exhibition' (which would not be competitive, but just a performance as is typically done at holiday time). These are girls who love to ice skate and probably work hard at it, but these are not elite skaters by any means.

ETA#2: Here's an excellent, concise explanation for the difference between USFSA and ISI level skating:
ISI is recreational- there's a big variation from rink to rink in how well skills have to be done to pass from level to level, and the emphasis is on skating for fun. At competitions, everyone gets a medal and the emphasis is on personal basts and having fun.

USFSA, beyond the learn-to-skate divisions, is competitive. Beyond the first two tests, which are encouragement tests (but skaters do occasionally fail them!), skaters are expected to not just do the elements but to do them well. Landing the jumps isn't going to mean passing the test if there isn't sufficient speed, flow, and power into and out of them and throughout the program. Skaters are tested by judges, not their coaches like in ISI.
http://skating.zachariahs.com/skatingforums/www.skatingforums.com/archive/index.php/t-16712.html
 

PoirotryInMotion

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<snipped>
After 16-month battle, Justina Pelletier returns home
Father vows to continue fight for family rights
The Boston Globe
By Zachary T. Sampson | GLOBE CORRESPONDENT JUNE 19, 2014


"Justina rode home with a pink blanket and polka-dotted pillow in her mother&#8217;s car. Before she left Thompson, she smiled and waved, saying it was awesome to see her parents again.

The first thing Justina planned to focus on when she got home, she said, was &#8220;my family.&#8221;

Jennifer said Justina would probably have to catch up on television shows, too, including her favorite: &#8220;Dance Moms.&#8221;

After Justina had returned, Lou Pelletier reflected on the raft of ice skating medals, more than he can count, that reside in his daughter&#8217;s room.

&#8220;She was a very active girl, and now as you saw me picking her up, she&#8217;s going to have a long way to go before she&#8217;s ice skating again,&#8221; he said. &#8220;But you know what? She will ice skate again.&#8221;

The Pelletiers said they are focused on helping Justina regain her health.

Linda Pelletier said she plans to enroll her daughter in pool therapy. &#8220;There&#8217;s going to be a lot of rehabbing with her, and hopefully she can walk again,&#8221; Linda said.

Jennifer Pelletier said she would like to teach her sister to skate again, but now Justina has no muscle strength and is &#8220;like a rag doll.&#8221;​
Seems like a highly achievement-oriented family situation from reading various interviews. I'm noticing the comments in this one by the parents and sister (in red). Justina doesn't mention what she wants to achieve; she just mentions what's important to her ("my family"). She smiles, speaks lovingly about her 'awesome' family--maintaining that relational aspect is paramount to her.

The interviews are very telling, IMO.
 

PoirotryInMotion

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Found the Youtube video I'd seen: http://www.youtube.com/watch?v=8lY3VhavzeQ

At the outset :)53) Justina does a spiral holding her free leg (with a very bent skating leg), a sit-spin that is lower and more centered than her sister's, and then some back crossovers. She's fairly light on her feet though her back crossovers aren't smooth yet, and she's not a power skater. I noticed she skates in reverse--eg. spins on her right foot instead of left. I know she attends a school for learning disabilities; it could be she's left-handed. Sometimes southpaws spin and jump in reverse of the usual.

Anyway...one thing I remember puzzling me about this video story--her dad talks about her older sister Jessica whose stomach 'shut down' and who had a muscle biopsy which showed mitochondrial disease. But from that he launches into saying that Justina, because it's a genetically-influenced disease, probably carries a marker for it...and "now he had two daughters being treated at Tufts." The thing I wondered is that it isn't clear (at least from this) that Justina ever had her own muscle biopsy done to diagnose mitochondrial disease. I got the impression the family and docs just decided to treat her for it because she 'probably' had it. Has anyone else read or heard differently? I haven't watched the whole video so maybe I just missed that fact.

The other thing I found curious is that Justina apparently has had a "clinical psychologist" for 5 years before all this...any mention on what that's about?
 

Donjeta

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One of the issues BCH had with the mito diagnosis was that she had had no biopsy.
 

forthelost

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Just for the record, if they want to enroll a teenager in a clinical trial (not "experiment on them") the teen has to give permission. If someone was enrolled in a clinical trial without a waiver or acceptance of said trial that'd be a great way to lose your job and ruin your career.
 

PoirotryInMotion

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Just for the record, if they want to enroll a teenager in a clinical trial (not "experiment on them") the teen has to give permission. If someone was enrolled in a clinical trial without a waiver or acceptance of said trial that'd be a great way to lose your job and ruin your career.

Not to mention, if the child is a minor the parents must sign off on the clinical trial. (One of our children was on a clinical trial.) I'm late to this case, obviously, but am interested now in going back to read the (closed) threads on here. Thanks for the info about the muscle biopsy issue, Donjeta!
 

i.b.nora

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I suggest to get started getting caught up, read the original Boston Globe articles (part 1 & 2) which you will find links to in the first few pages of the first thread on this topic. Also, early news reports by Beau Berman of Fox Connecticut. Those should give a good overall view of what occurred up to the release of those articles. However, it cannot be stated too strongly that much of the information in this whole story comes solely from the Pelletier family.
 
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