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

[jjenny]

My personal opinion is that it couldn't be any more obvious this child was never abused.
Whatever illnesses she has were not caused by her parents (unless one assumes they are responsible due to genetics).
Therefore she should never have been removed to begin with.
Or DCF should have admitted much sooner it made a mistake in removing her.
It took a lot of time and pressure for DCF to finally release her.
And it shouldn't have happened.

 

[Linda7NJ]

What if she really was physically/medically unable to do what they were trying to force get to do ? IMO that would be child abuse.

No, physically moving her body and not allow her muscles to constrict is always a good thing.


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[K_Z]

i agree, doctors are becoming more like little gods... that is why i choose not to take my child to doctor's anymore, i trust in my own good judgement.

reporters, judges, police, state agencies, doctors, psychiatrists, priests - none of these can be trusted because i can show you examples of times when people in these professions have been corrupt.

so if my child is ever kidnapped by her school and locked up in a hospital where they tell me she has cancer, it should be my absolute right to bring her home and seek as many opinions as i want, and if i choose so it should be my right to discount any doctor's (damn little gods) opinions and not provide her any treatment.

considering the level of conspiracy that massachusettes (and i consider the entire state complicit in this) has engaged in to deny this girl and her family of their freedom (even the right to see the sunlight!!) surely they could have faked or planted the stories of other reports of abuse/neglect, i have not personally seen any proof of it so i choose not to believe it happened. you expect me to trust the media?!

a doctor just hours out of medical school got his feelings hurt and decided to play god and punish this girl by using her a guinea pig for secret research. it is appalling.

all just my opinion, based on what i decide words mean to me.

Wow. Very, very deeply disturbing post.

Well, I'm not exactly sure what this post is trying to communicate other than very pathological paranoia, but it is deeply disturbing, IMO. This is not even in the ballpark of reasonable or logical thinking, IMO.

reporters, judges, police, state agencies, doctors, psychiatrists, priests -none of these can be trusted

Really??? None? Not a single one? Painting every single authority figure and health professional with such a broad and paranoid brush is evidence of very disordered thinking.

It's even more unsettling and disturbing that this level of paranoia and altered judgment could put a child's health and well being at risk due to a parent's pathology.

Someone who has these kinds of "thoughts" is a real and continuing danger to children, and should not have access to them, IMO. This kind of thinking is not a parent or caregiver thoughtfully evaluating what is, or is not beneficial for a child, or what is in their best interests-- but irrationally rejecting "everything" out of hand, due to their own paranoia. It's profoundly antisocial, and again, IMO, pathological thinking to an extreme. Worrisome.

 

[Linda7NJ]

Wow. Very, very deeply disturbing post.



Well, I'm not exactly sure what this post is trying to communicate other than very pathological paranoia, but it is deeply disturbing, IMO. This is not even in the ballpark of reasonable or logical thinking, IMO.







Really??? None? Not a single one? Painting every single authority figure and health professional with such a broad and paranoid brush is evidence of very disordered thinking.



It's even more unsettling and disturbing that this level of paranoia and altered judgment could put a child's health and well being at risk due to a parent's pathology.



Someone who has these kinds of "thoughts" is a real and continuing danger to children, and should not have access to them, IMO. This kind of thinking is not a parent or caregiver thoughtfully evaluating what is, or is not beneficial for a child, or what is in their best interests-- but irrationally rejecting "everything" out of hand, due to their own paranoia. It's profoundly antisocial, and again, IMO, pathological thinking to an extreme. Worrisome.

I believe that entire post was sarcasm pointing out how pathological some supporters are.
Read the posters previous posts.


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[Donjeta]

I read the post as sarcasm.

 

[K_Z]

I believe that entire post was sarcasm pointing out how pathological some supporters are.
Read the posters previous posts.


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I read the post as sarcasm.

WHEW!! Ok, I was really worried there! I was reading so fast to catch up I missed the sarcasm. :blushing:

I am really relieved! I was really bothered by that post!

#gullible me...... :blushing:

My very sincere apology to liljim. :loveyou: Brillant sarcasm! Foolish me!

 

[sweetmom]

My personal opinion is that it couldn't be any more obvious this child was never abused.
Whatever illnesses she has were not caused by her parents (unless one assumes they are responsible due to genetics).
Therefore she should never have been removed to begin with.
Or DCF should have admitted much sooner it made a mistake in removing her.
It took a lot of time and pressure for DCF to finally release her.
And it shouldn't have happened.

Her illnesses may not have been directly caused by her parents, but their resistance to psychological treatment for Justina made her illness worse, IMO.

And, for the umpteenth time, the main reason it "took a lot of time and pressure for DCF to finally release her" is that they could not find a suitable rehab facility to release her to, and THAT was because of the parents' belligerent and stubborn refusal to agree to one AND their threats to sue and/or picket any facility that did offer to take her. Please keep in mind that DCF and BCH wanted to release her in June 2013, a full year ago, and the Pelletiers did everything they could to keep that from happening. IMO, that is what shouldn't have happened.

 

[liljim]

it is mind boggling to me that after all this discussion people could still lack a fundamental understanding of somatoform and what is alleged in this case.

can anyone provide a link to someone from children's or DCF or the court claiming that the parents were the cause of justina's illness?

 

[jjenny]

it is mind boggling to me that after all this discussion people could still lack a fundamental understanding of somatoform and what is alleged in this case.

can anyone provide a link to someone from children's or DCF or the court claiming that the parents were the cause of justina's illness?

Why don't you clarify as to what exactly was alleged in this case?
Cause I sure can't figure it out.
Are you suggesting that DCF had to remove child from parents because they refused to treat her for somatoform?
Well, they are still refusing to treat her for somatoform, yet DCF returned her to them.
So that doesn't fly.

 

[Linda7NJ]

Why don't you clarify as to what exactly was alleged in this case?
Cause I sure can't figure it out.
Are you suggesting that DCF had to remove child from parents because they refused to treat her for somatoform?
Well, they are still refusing to treat her for somatoform, yet DCF returned her to them.
So that doesn't fly.

It's been clarified repeatedly.


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[annahanna]

Get parents didn't have custody, how could they have put the kabash in anything ?

I suspect that this very elite program is what the docs at BCH had in mind for Justina initially but her parents put the kabash on that quickly.

Initially, her parents did have custody. DCF became involved 4 days into her hospitalization and DCF was granted temporary custody on the 15th of February, 2013. Because her parents were (and still are) unwilling to entertain any idea that Justina could be suffering from anything but "Mito" and only "Mito" they would have been unwilling to consider a program like the one I mentioned. The PPRC program requires strong family involvement so it would be impossible to place Justina in the program without her parents support and participation.

 

[liljim]

Why don't you clarify as to what exactly was alleged in this case?
Cause I sure can't figure it out.
Are you suggesting that DCF had to remove child from parents because they refused to treat her for somatoform?
Well, they are still refusing to treat her for somatoform, yet DCF returned her to them.
So that doesn't fly.

is that a no then?

ok cool.

 

[annahanna]

What if she really was physically/medically unable to do what they were trying to force get to do ? IMO that would be child abuse.

They were not "forcing" her. They were encouraging her, cajoling her, and trying to motivate her, but I can assure you that they were not "forcing" her. There was no corporal punishment involved. You seem to forget that justina was inpatient at one of the largest and best respected children's hospitals in the country. Perhaps you are not aware that physical therapy at BCH (and every other hospital I am aware of) occurs in a gym with multiple patients at the same time. Other patients - and often their parents - would have been present in the gym with Justina. They would have seen force, torture, or inappropriate behavior on the part of the therapists.

Using a harness - suspended from a frame or from the ceiling - is a very simple and safe method of teaching a patient to stand, bear their own weight, and eventually walk. Almost every patient is capable of practicing standing and moving their legs in the harness. (Think of a small baby in a "jolly-jumper" or "exer-saucer" type device.). The fact that Justina "didn't walk or stand" is a strong clue that her "inability" to walk is either behavioral or psychiatric.- not physical or medical. (This is of course My Opinion.)

 

[hopingicanhelp]

i agree, doctors are becoming more like little gods... that is why i choose not to take my child to doctor's anymore, i trust in my own good judgement.

reporters, judges, police, state agencies, doctors, psychiatrists, priests - none of these can be trusted because i can show you examples of times when people in these professions have been corrupt.

ETA: Just read further and saw your post was meant to be sarcastic -- get it and I apologize in advance, no attack in waiting... but I decided to leave the rest of my post because I believe that it "has a point" with regards to those who are automatically supporting the parents and poo-pooing all the doctors...

This is OT and refers to another case (Garnett Spears specifically, or MBP generally) -- we condemn doctors for wrongly accusing parents of medical child abuse and yet we wonder where the doctors heads were with Garnett Spears and why wasn't it noticed and why isn't he alive today?

We definitely have to advocate for ourselves and our children -- however... should we find that the experts are questioning our judgment, let's engage in discussion and find ourselves grateful that someone in that position did the hard thing by questioning us -- it's soooooooooo much easier for all parties to give each other the benefit of the doubt and stay silent.

 

[K_Z]

http://failuretolisten.files.wordpress.com/2014/04/justinaletter1.jpg?w=1160

This is a copy of the note that was reportedly "smuggled" out by Justina's parents when she was in DCF custody in MA. It is very difficult to read as it is full of misspellings, grammatical errors, and very poor handwriting. The site this was posted on made an attempt to decipher it. Some of the translation I agree with. Some I don't. However, what can be deciphered from the note appears to be the complaints of a very immature child who does not like the rigors of Physical Therapy and Occupational Therapy. It is quite obvious from this note that Justina was given PT and OT and it is apparent to me (IMO) that she deliberately did not participate. "I didn't walk or stand." True, rehabilitative PT and OT are difficult, painful experiences. They are not the "soaking in the swimming pool" and "sleeping late" experiences that Justina is looking of forward to.

Translation from "the note":
*"When I got on harness thing they try moved my legs. I didn't walk or stand."
*"They are ----" (---- illegible - leang? - any guesses?)
*"What happened the other nite --- did you see me? (---- illegible - maybe hurt or how - any guesses?)
"OT laugh at me when I am falling."
*"And a lot more...."
*"When am I ------ on news?" (----- illegible - any guesses?)
*"I am speaking up like "I can't do it."They say YES and then I say "it torture - STOP" and they say nothing and they --- pushing me and goes on and on!" (---- illegible - any guesses?)
*"They yell at me."
*"Please don't let me go anywhere else,"
*"They don't care that I'm sick, they treat me the same way. It's ----- everything!" (---- illegible lrirn - learn? - any guesses?)
*"They do not let me sleep very much."
"Hurry"
*Carolyn/Kristin and more OT and Dominic they hurt me all the time push me all the time and more."

I wanted to comment on this smuggled letter. I remember that Justina was in a very special, expensive private school for children with profound learning disabilities. Apparently, Justina's parents had to "battle" their local school district to get them to pay for this special school-- after the efforts of the local school were insufficient for Justina's needs. We can assume that she does, indeed, have severe learning difficulties, from that process. (And from her admission to the special school.)

As I read this letter, I see what is probably evidence of her severe learning disabilities in her writing style. We have nothing to compare it to-- perhaps this is better, or worse, or roughly the same, than her writing abilities before she was hospitalized.

While this letter sounds pretty petulant and immature, kids and teens with learning disabilities often write using much more simplistic language and vocabulary than you might expect when talking to them. On paper, with a written assignment, they appear "less" intelligent than they appear in person. This is very common among students with severe dyslexia. One of the best strategies for them is to learn to use dictation assistive devices (like Dragon, and the dictation apps on smart phones for texting, etc) for their ideas and thoughts, and academic assignments, which will more fully express their real intelligence level and true abilities. Assistive technology and adaptive technologies allow students with learning disabilities to thrive and learn. Many with average, or above average intelligence and severe learning disabilities are actually able to go to college, and excel in college and careers, provided they have the right kind of help as they grow.

I hope Justina gets this kind of help with her learning difficulties-- real world strategies to succeed.

 

[jjenny]

"The problem, however, is that not every accusation is true, and DCF lacked a good way to evaluate the complaint from Children’s. In the Pelletier case, the family’s resistance to Children’s was not unfounded or unreasonable; another doctor, at Tufts Medical Center, had earlier backed the mitochondrial disease diagnosis. DCF employees are social workers, not doctors or scientists. To judge such claims, the state instead relied on free advice from local hospitals — often Children’s."


http://www.bostonglobe.com/opinion/...-take-stock/hLAI0dt0yeDCn7zqB1Q88K/story.html

 

[Elley Mae]

"The problem, however, is that not every accusation is true, and DCF lacked a good way to evaluate the complaint from Children’s. In the Pelletier case, the family’s resistance to Children’s was not unfounded or unreasonable; another doctor, at Tufts Medical Center, had earlier backed the mitochondrial disease diagnosis. DCF employees are social workers, not doctors or scientists. To judge such claims, the state instead relied on free advice from local hospitals — often Children’s."


http://www.bostonglobe.com/opinion/...-take-stock/hLAI0dt0yeDCn7zqB1Q88K/story.html

bbm, That sums it up for me. jmo

 

[Linda7NJ]

"The problem, however, is that not every accusation is true, and DCF lacked a good way to evaluate the complaint from Children’s. In the Pelletier case, the family’s resistance to Children’s was not unfounded or unreasonable; another doctor, at Tufts Medical Center, had earlier backed the mitochondrial disease diagnosis. DCF employees are social workers, not doctors or scientists. To judge such claims, the state instead relied on free advice from local hospitals — often Children’s."


http://www.bostonglobe.com/opinion/...-take-stock/hLAI0dt0yeDCn7zqB1Q88K/story.html

You do realize that's an editorial ?
An opinion piece.
IMO not much different than a blog.


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[Elley Mae]

You do realize that's an editorial ?
An opinion piece.
IMO not much different than a blog.


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As are all of Justina's diagnosis, opinions from a dr, no?

 

[Linda7NJ]

As are all of Justina's diagnosis, opinions from a dr, no?

Next time you need medical treatment, I doubt you'll be going to see an editor for a diagnosis & treatment. IMO


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