Family battling Children’s Hospital to bring teen home for Christmas #2

[jaunty-girl]

She has not been given the opportunity to speak to the judge though she has wanted to. She is 16 years old now and wanted to make that appeal, it was the only way, apparently for her to be heard.

I was unaware that the judge denied her an opportunity to speak on her own behalf. Do you have an article I can read that talks about that?

 

[annahanna]

Justina did testify before the judge in the December hearing.

"In the bitter cold of last Thursday morning, on the final day of the trial to determine Linda and Lou Pelletier’s fitness as parents, Juvenile Judge Johnston prepared to hear testimony from the witness at the center of it all. Justina was wheeled into the fourth-floor courtroom of the Edward Brooke Courthouse in Boston.

For the first time in this protracted case, the 15-year-old girl appeared in a courtroom to weigh in on her own future. Improbably, her hospitalization had consumed almost an entire year of her life."

http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

 

[Donjeta]

They know what her level was before removal from her family and they know by testing what her level is now.

Yes, no doubt, but they have been very careful not to tell us the before results.

And it's not actually necessary for the family to own a wheelchair for a child to have trouble walking. You can rent or borrow them if it's not certain to be a long term requirement.

 

[Linda7NJ]

She has not been given the opportunity to speak to the judge though she has wanted to. She is 16 years old now and wanted to make that appeal, it was the only way, apparently for her to be heard.

That's not true. Edited to add...^ link above ...she did so.
And
She has a Guardian Ad Litem. I'm quite certain he/she has relayed her feelings on the matter, regardless if he/she agrees or not. While the GAL isn't "her personal" attorney, the GAL is tasked with seeing that her best interests are first and foremost.


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[Linda7NJ]

It has been stated throughout this past 16 months that she has regressed while in the care of the state.

Stated by Lou & clan




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[annahanna]

They know what her level was before removal from her family and they know by testing what her level is now.

Then why is Lou saying that her level is between Kindergarten and 2nd grade? If the West Hartford School District tested her, they would know exactly what her grade level is in each subject area tested.

Prior to admission to Boston Children's, Justina was not attending school in the West Hartford School District, she was attending the Ben Bronz Academy - a school for children with significant learning disabilities. The tuition to this very expensive private school was paid (after convincing by the parents in 2012) by the West Hartford Public School District. As a general rule, public school districts pay private school tuition only when the student meets the qualifications of IDEA (Individuals with Disabilities in Education Act) - meaning that they are significantly learning disabled and all other school interventions have been tried and failed. That implies that Justina's educational achievement was very low prior to the start of this tragedy. Since the parents did not release her scores - and the school district won't release them under privacy laws - no one has any way to know if this is a regression in academic achievement or not.

*IDEA also applies to physical disabilities, but we "know" from the family's statements that Justina did not have physical disabilities before her admission to BCH. - And if she did, and that was the reason for private school placement, she would not have been placed at Ben Bronz as they specialize in cognitive learning disabilities, not physical restrictions to education.

 

[Linda7NJ]

This poor girl has begged her family for 16 months to get her out of there, she wanted to go home from the beginning and didn't understand why she was being kept there. The entire time she was in BCH psych ward they were forbidden from talking about that or anything medical. They did there best to keep things light and make the visits positive. They aren't using her. They gave her the opportunity to speak. That is in her best interest, and best for her mental health, imo.

By "they" are you referring to her parents?
They certainly did not "keep things light" ...it's documented that instead of spending quality time with their daughter, they harassed and threatened the staff as well as told the parents of other patients their children would be kidnapped.

Let's not rewrite known history.


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[Linda7NJ]

I don't care if he's a wanna be Ninja or wanna be Pied Piper.



There are a lot of people (including Lou) whose personality rub me the wrong way. But their child has been gone way too long over accusations, with no proof at all.



I read a dozen stories a day here with more evidence of abuse where 'reunification' happens without so much as a heavy sigh.



JMO and all that jazz.

How do you know there is no proof?
Seems to me she's doing far far better than she was with her parents.
She hasn't needed hospitalization. That's HUGE no matter how her parents try to spin it.

I suspect her medications have been decreased & adjusted. She seemed to be on way too many medications with no real cohesive oversight.

Her "mito cocktail of vitamins" hasn't proven to be the answer or cure. I'd bet my last dollar that never stopped.






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[annahanna]

There has been significant debate about Justina's walking ability before her arrival at BCH. I have overlooked this in the past, but I found this in the Boston Globe article (part 2): "She used a wheelchair to get around the corridors, because she hadn’t been walking since before she arrived by ambulance in February." http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html
I tend to believe the accuracy of the first 2 Boston Globe pieces because the Globe started investigating this case - and interviewing the parents - back in April 2013. The article was not published until December 2013 so there was significant time to research information and verify facts. Just my opinion.

 

[K_Z]

This poor girl has begged her family for 16 months to get her out of there, she wanted to go home from the beginning and didn't understand why she was being kept there. The entire time she was in BCH psych ward they were forbidden from talking about that or anything medical. They did there best to keep things light and make the visits positive. They aren't using her. They gave her the opportunity to speak. That is in her best interest, and best for her mental health, imo.

BBM. Respectfully, giving your child the opportunity to speak and "express herself" in the APPROPRIATE environment, is VASTLY different than endorsing the posting of an emotional (and IMO, exploitative and manipulative) video on YouTube, set to public, and then giving interviews about this to media outlets. A week or so before a custody hearing. Mmmhmm. This is best for her mental health?? Seriously?? What legitimate, reputable counselor, psychologist, or psychiatrist would recommend THAT kind of therapy for a vulnerable adolescent with serious psychological problems?? Holy Toledo.

There is nothing about that video that screams protective, therapeutic, in her best interest, or mentally healthy. Justina, respectfully, is not in a good position to make independent decisions about what is best for her. She is not a "typical" 16 year old girl involved in a divorce custody dispute. This young girl is quite vulnerable, and has documented serious psychological problems, in addition to whatever her physical illness is, or is not.

She is far too vulnerable to be making videos and posting them online publicly. It is very disturbing that her own father, who believes she is so very ill, and "mentally regressing", cannot see that.

Maybe I'm the only one who worries that return to her parents may not be in her best interests. I really don't like the idea that this emotionally and psychologically fragile girl/ teen is being paraded around in the media by her own parents.

I watched that video and felt like I had just witnessed abuse and exploitation of a vulnerable person. I guess I'm pretty shocked anyone could interpret that video as a mentally healthy thing to do, or somehow "empowering". Yikes.

I really do not think her parents have her best interests in mind. I don't. I don't see them as "warriors" at all.

 

[jaunty-girl]

Maybe I'm the only one who worries that return to her parents may not be in her best interests. I really don't like the idea that this emotionally and psychologically fragile girl/ teen is being paraded around in the media by her own parents.

I watched that video and felt like I had just witnessed abuse and exploitation of a vulnerable person. I guess I'm pretty shocked anyone could interpret that video as a mentally healthy thing to do, or somehow "empowering". Yikes.

I really do not think her parents have her best interests in mind. I don't. I don't see them as "warriors" at all.

You're not the only one. At this point, with her not being in a hospital at all and no new reports of her having medical issues requiring hospitalization, she seems stable. She was clearly not stable at the time of her arrival at BCH, by her mothers own words.

No matter how loud her parents scream that she's declining and in terrible shape, I see someone who is at the very least, a little better than she was before she was admitted. She was already in the wheelchair, speech was already impacted, but as far as we know she hasn't undergone any new drastic medical procedures.

That video in my opinion, is a disgusting emotional grab, designed to attract the media. It is most assuredly not what you would expect from caring parents, with the Justina's best interests at heart.

 

[K_Z]

In most of the closeup shots of Justina her eyes are telling to me. She doesn't look well, imo. Not as a girl her age should look health wise. She has been getting treatment from her Tufts doctor's since leaving Mass.

I'm confused about this post. Clearly, Justina isn't well, and hasn't been for a very, very long time.

She is also clearly not a typical healthy 16 yo teen. She has been in a locked psychiatric ward for over a year, and in long term residential facilities after that, and was ill for a long time before any of that. She uses a wheelchair. With that history, I wouldn't expect her to look healthy, or "normal".

And maybe I'm a pessimist (or a realist), but I don't expect any "miracle" treatments to come about from the Tufts doctors, as compared to the BCH docs. Whether she has mitochondrial disease and/ or somatoform and other psych issues, there is no "fix" for these conditions. No magic cures. No magic vitamin cocktails to fix this.

And I'm puzzled by the criticism of the BCH psych unit as a "failure." Justina is ALIVE and relatively functional and interactive in a far less restrictive therapeutic environment! That is a success-- the BEST outcome that can be hoped for n the short run. Patients are discharged from psych units for all sorts of reasons. But in Justina's case, there is an assumption on the part of some that "discharge" equals "cured", or should equal cure, or else the diagnosis was false and the docs were no good. Pretty much no psych patients are "cured" at discharge from inpatient units. Most serious psych disorders aren't curable at all--at best, can be managed in a more stable fashion in a less intensive environment.

It baffles me that some folks think serious psych disorders (Axis I) can be "cured". They are lifelong disorders for nearly every patient, with various periods of relapse and remission of symptoms.

 

[K_Z]

This thread has been very critical of the parents. Lots of opinion. Mine is that Justina and the family have had to endure much injustice and they have come through it well. When the suit is filed the public will get information that will make there stance more understandable.

BBM. And understandably so! The parents KEEP showing up in the public, courting all sorts of press and media coverage, and giving interviews! That makes them FAIR GAME for criticism, IMO.

There is a very simple solution to all of the public criticism these parents face.

Stay out of the media. Keep your child out of the media. Shelter vulnerable, ill children and adolescents from the effects of media attention. Make sure no media outlets know their name, or use their name for profit. Just don't do it. Wage your "wars and battles" using legitimate private avenues to affect change. Play fair. Fight smarter, not harder. Pick your battles.

I profoundly disagree that Justina and family have "come thru this well". Their personal, family life is an abject disaster, IMO. The father has twisted this entire situation into a narcissistic, wannabe political platform. Watch his expression in the latest interview! If that isn't psychopathic "duping delight", then I don't know what is!

The parents, IMO, have failed this young girl at every possible avenue. The parents are like wayward, mouthy, oppositional adolescents-- belligerent to the end, just for the sake of "winning" some perceived advantage.

I think the decision to remove her from their custody was very likely the best one for Justina. The only thing to give her a chance to exist apart from their toxic influence. I think it's pretty sad that she will probably be returned to them, to begin the cycle anew.

 

[CHERIE.T]

BBM. And understandably so! The parents KEEP showing up in the public, courting all sorts of press and media coverage, and giving interviews! That makes them FAIR GAME for criticism, IMO.

There is a very simple solution to all of the public criticism these parents face.

Stay out of the media. Keep your child out of the media. Shelter vulnerable, ill children and adolescents from the effects of media attention. Make sure no media outlets know their name, or use their name for profit. Just don't do it. Wage your "wars and battles" using legitimate private avenues to affect change. Play fair. Fight smarter, not harder. Pick your battles.

I profoundly disagree that Justina and family have "come thru this well". Their personal, family life is an abject disaster, IMO. The father has twisted this entire situation into a narcissistic, wannabe political platform. Watch his expression in the latest interview! If that isn't psychopathic "duping delight", then I don't know what is!

The parents, IMO, have failed this young girl at every possible avenue. The parents are like wayward, mouthy, oppositional adolescents-- belligerent to the end, just for the sake of "winning" some perceived advantage.

I think the decision to remove her from their custody was very likely the best one for Justina. The only thing to give her a chance to exist apart from their toxic influence. I think it's pretty sad that she will probably be returned to them, to begin the cycle anew.

:goodpost: :thumb: :bow:

 

[Charlie09]

BBM. And understandably so! The parents KEEP showing up in the public, courting all sorts of press and media coverage, and giving interviews! That makes them FAIR GAME for criticism, IMO.

There is a very simple solution to all of the public criticism these parents face.

Stay out of the media. Keep your child out of the media. Shelter vulnerable, ill children and adolescents from the effects of media attention. Make sure no media outlets know their name, or use their name for profit. Just don't do it. Wage your "wars and battles" using legitimate private avenues to affect change. Play fair. Fight smarter, not harder. Pick your battles.

I profoundly disagree that Justina and family have "come thru this well". Their personal, family life is an abject disaster, IMO. The father has twisted this entire situation into a narcissistic, wannabe political platform. Watch his expression in the latest interview! If that isn't psychopathic "duping delight", then I don't know what is!

The parents, IMO, have failed this young girl at every possible avenue. The parents are like wayward, mouthy, oppositional adolescents-- belligerent to the end, just for the sake of "winning" some perceived advantage.

I think the decision to remove her from their custody was very likely the best one for Justina. The only thing to give her a chance to exist apart from their toxic influence. I think it's pretty sad that she will probably be returned to them, to begin the cycle anew.

I couldn't disagree with you more.
I think the parents did the only thing they could think of to bring attention to the situation and that attention is what has probably saved Justina's life.

 

[believe09]

I agree that causing a media storm regarding Justina's incarceration by the state helped put her on the path to reunification with her family. It is incarceration, respectfully and imvho. I am intensely skeptical of the circumstances under which she was removed from her family. I am very concerned about what she has been told about herself while she was removed from the care of her family and the care of her physician. I wonder how it is possible for this family and this child to be "normal" again after this and I hope there is a certain amount of transparency regarding what was done during her time in the facilities and during the treatment provided by BCH and DCF.

 

[txsvicki]

This is just my opinion and may be wrong, but, watching that video of Justina speaking is very telling. She may have mito that causes fatigue in her muscles, and may have some learning disabilities. But, the way she starts out acting as if she is special needs, barely able to speak then speaks very well at the end, IMO, shows that she has learned to manipulate doctors and situations. Whether it's to try and get multiple doctors to listen, to get into hospitals, to get over concerned parents to leave her alone for awhile, teachers to quit pushing, etc, is for others to figure out. If that ER doctor saw this, then no freaking wonder he thought somatoform. It does need to be treated. No kid should have to behave that way to be listened to or left alone. They need to figure out if her muscles are just fatigued or if she's doing some of this on purpose.

 

[jjenny]

You seem to be confusing somatoform with malingering.
Persons suffering from somatoform are not faking their symptoms.
Thus, the idea that BCH diagnosed her with somatoform because they thought she was faking her symptoms doesn't hold water.

 

[jjenny]

Justina did testify before the judge in the December hearing.

"In the bitter cold of last Thursday morning, on the final day of the trial to determine Linda and Lou Pelletier’s fitness as parents, Juvenile Judge Johnston prepared to hear testimony from the witness at the center of it all. Justina was wheeled into the fourth-floor courtroom of the Edward Brooke Courthouse in Boston.

For the first time in this protracted case, the 15-year-old girl appeared in a courtroom to weigh in on her own future. Improbably, her hospitalization had consumed almost an entire year of her life."

http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

Yea, well, and there were people arguing that we don't know what she said. Well, now we do. She clearly wants to go home and always wanted to go home.
I have no idea why someone would object to her saying what she wants to do. She is 16 and is perfectly able to express her opinion.
It's supposed to be a free country after all.

 

[txsvicki]

You seem to be confusing somatoform with malingering.
Persons suffering from somatoform are not faking their symptoms.
Thus, the idea that BCH diagnosed her with somatoform because they thought she was faking her symptoms doesn't hold water.

There could be some exaggeration going on in addition to multiple other reasons including somatofrom and Mito. We don't know, but I have ears and eyes to witness her speaking and can't help but wonder. I also can't believe that anyone really thinks that such a video would impress a judge or not raise even more suspicion