cross-posted at Raising Asperger’s Kids
One of the greatest unspoken fears that any parent of a special needs child lives with is that the State decides that they know better how to care for your child then you do. That when you disagree with doctors or hospitals, they in turn will call in the child welfare authorities and rip your child out of your arms. This scenario is playing itself out in Massachusetts with the Pelletier family.
Their 15-year-old daughter, Justina, like her older adult siblings, has been diagnosed with mitochondrial disease. She, like her siblings, was being treated for that rare illness. Her disease was diagnosed by Tufts Medical Center doctors. One of the top hospitals in the nation. On a trip to Massachusetts, from their home in Connecticut, she became sick and was taken to Children’s Hospital in Boston. Where upon a neurologist decided that her diagnosis was all in her head and refused to treat her for mitochondrial disease. The parents hearing this insisted on a second opinion, whereby the doctor and hospital called in child welfare services when the parents went to take their then 14-year-old home. The hospital immediately went to court and had the girl committed to their lockdown mental institution where she has been for over a year.
Her parents were only allowed minimal contact, once a week visits, and two monitored phone calls. In fact the Girl had to devise a way to tell her parents what was going on in the institution in secret, because when she told them about events with nurses listening, she said she would be punished by staff after her parents left. The father has been on television, radio and in the newspaper trying to garner support for their position. The hospital actually went to court and demanded a gag order on the proceedings, which the father violated. He said, its his daughter and he will talk about her case if he wants, despite any court sanction. Apparently in this brave new world, if the state can take away your child, they can deny your freedom of speech to talk about your child and your legal proceedings as well. Of course the Massachusetts judge who ordered the gag has brought criminal charges against the father.
Meanwhile, for the past year Justina has received no medical treatment for her mitochondrial disease. Instead she is being treated with psychiatric medication and behavioral intervention therapy. She is without a doubt medically fragile according to her parents and their advocates.
Yesterday in a court proceeding, where the parents thought they were going to get their daughter back, the judge instead deemed them unfit parents and moved their daughter permanently into foster care. She is to be moved from the mental institution within 48 hours to an unknown foster care location on Boston’s North Shore. So this Massachusetts judge has ordered the severing of ties between this Connecticut citizen (someone with no ties whatsoever to the state other than she was on a vacation trip at the time of her illness) and her parents. Her mother had to be hospitalized after the proceedings.
Meanwhile, I wonder what the State of Connecticut is doing to protect the rights of its citizens in this case? Anybody? Anybody? Has someone ever spoken to the Connecticut Attorney General about this situation? Afterall, this family sought treatment for this child at home and obviously sent her to school in Connecticut. What does the school district have to say about what happened? I am hard pressed to believe that Justine did not receive some kind of accommodation for her education considering the nature of her disease. Are those persons in Connecticut that are attached to this girl, either as educators or doctors, now accepting the fact that according to Massachusetts they are accessories to child endangerment and abuse? Are they accepting the fact that they are now liable under law and can possibly be brought up on criminal charges, never mind losing their professional licenses?
This is not China, the Soviet Union or a totalitarian nation. This case is happening right here in the United States in the State of Massachusetts. A state that has one of the most liberal-progressive governments in the country. A state that is held up as a symbol of proper government and true humanitarian reality. But for the Pelletiers nothing could be farther from the truth. The Pelletiers are living through a true dystopian nightmare with the health of their daughter caught between the egos of doctors, hospitals and self-righteous judges.
When MrGS was very little, we had had a huge disagreement with his diagnosing psychiatrist about a medication. He had prescribed risperdal for him. After two days of taking the drug Mr. GS, as a 9 year old, said he felt like he was going crazy. We immediately threw the medicine in the garbage. At the time one rare side effect of this drug was psychosis, which it actually seemed had effected MrGS. (Recent lawsuits have proven that there are other harmful side effects to this medication that can occur.) The doctor was rather incensed that we stopped the risperdal without his permission. (He would have insisted we keep him on the med to see if the side-effect passed.) In fact, he kept trying to get me to put Mr.GS back on that medication. I flatly refused. Then after some other unpleasant incidents, where I called him on not following through on promised supports and therapies for MrGS, this psychiatrist told me to go to another doctor, which I gladly did. But what would have happened if he had called the child welfare authorities because of our disagreement, saying I was abusing my child because I wouldn’t listen to his diagnosis, follow his medical advice and wanted to talk to another doctor? What would have happened if someone in his office had done the same? At the time it had never occurred to us that anyone would threaten our parental rights in any way when it came to medical decisions for our children. It truly seems that times have changed.
Read the rest HERE