AS 5-year old being 'restrained' and what U can do to help support this family

Dear empathetic friend and citizen:

 Might you spend just a moment?   I know your time is valuable.  But the time it could take you to shoot an email could make a big difference in the life of our five-year-old girl and our family.  This could be a blessing.

When we understood what had happened we were outraged.  Maybe it is time parents and their friends found a way to stick together.

Let me fill you in with a story.  Tell me how you would feel.

Your child has many medical problems, she stumbles, she bumps into things, she gets dizzy, easily confused, often does not know what is going on.

You bring her to a hospital for tests.  Say it is called The Beauxfort Hospital.  They tell you what a happy, bright child you have.  They say nothing is wrong with her.  She will grow out of it. 

You show them the results of other testing.  Then they tell you they have a truly wonderful treatment approach.  They recommend one of their centers.

After a few months of "treatment" your daughter shows the signs of Posttraumatic Stress Syndrome (Shell Shock), nightmares, fears, bad thoughts, hours up at night screaming and shaking in total fright, things she never had or did before.  She seems exhausted at the end of each day.  Your once happy child is beginning to be afraid of being touched.  Your family is at a loss from weeks of nights without sleep.  The staff minimizes your concern and tells you that many children have these problems.

After a few months more of giving them the benefit of the doubt you have a feeling that no one working with your child at The Beauxfort has any experience with your child's condition.  You ask the staff to consult with some other experts you have identified.  Within a few miles are hosts of experts and institutions that you have identified with great reputations and a great deal of experience in your child's medical condition. They tell you they know what they are doing and do not need the help.  They act insulted.  Any professional would recognize the value of the interchange of ideas.  You are getting skeptical.  Though, your insurance covers The Beauxfort so you decide stick with it a bit more.

Because you are concerned you ask to observe the treatments.  The Beauxfort does everything it can to block you and your trusted experts from access.  The only reason they give for not allowing your child's psychologist to visit is that they really dislike her.  But every other expert that knows your daughter's psychologist thinks she is wonderful.  Then, two children you know at the hospital independently approach you and tell you that they hear your daughter screaming all the time.   You ask the hospital director about this.  The reply, not apologetic, not she will look into this, not concern, but that you have no right to solicit information from other children.

Then the puzzle pieces begin to fall into place when your daughter finally, after tremendous resistance, tells what her dreams and bad images are about.  They are all about being restrained while frightful harm is being done to her body.  She offers an outline of events that your once happy five-year-old daughter just does not have the capacity to make up.  These clearly showed a child under extreme emotional duress from what the staff has been doing.  You get a sense their self-importance is masking approaches better characterized as medieval, ignorant and simply dangerous.

You recall seeing some restraint being used on you daughter at the Beauxfort, but at the time you were assured this was the right thing to do.  Then you did not know enough to understand the implications.  But now you find out from other parents that at the Beauxfort instead of using medically established treatments they use physical restraint as their key mode of intervention, something nothing to do with your child's and other children's needs and inimical to her and their well being.  Other parents have been horrified as well.  They also have been shocked at the bureaucratic intransigence, arrogance, as well as the total lack of appropriate staff training. 

To make things worse you find out that the staff at The Beauxfort knowingly gave you deceptive evaluations from the beginning.  They knew she had a well-recognized brain disorder, but they did not tell you, because they did not want you to know they did not have the expertise to work with her. 

Additionally, the staff at The Beauxfort is told they cannot consult with any outside experts lest it cost them, lest their ignorance be made public.  You also find that at The Beauxfort well meaning staff is threatened with the loss of their job if say too much about this.

Then you learn more still.

You learn there is a great deal of medical evidence your child could be helped substantially.  You have been asking for these appropriate treatments.  Not only was the untrained staff winging it at your daughter's expense, but when administrators above them found out they ask the staff to not even bother to do this.  The administrators instead had the audacity to accuse you of not accepting that your child's chronic illness cannot be helped.  At the same time they sought to save money by substituting for an empathetic ear, quick and dirty punitive approaches.

You also learn that there is substantial medical evidence that shows delay in appropriate treatments particularly at this young age makes the long-term prognosis far worse.

You are horrified.  Then you do what every other rational parent would do.  You asked The Beauxfort to transfer your child to another hospital.  And suppose The Beauxfort offers the most self serving and irrational of all responses.  THEY REFUSE!!!  They refuse to give your child a transfer saying they have the best place for her. They have painted themselves into a corner and you along with it.   Should they allow you to pull your child out, it might say something about them.

It seems they would rather face a law suite, costly to you, and to the taxpayers who support the hospital, because it allows them to delay with the hopes they will continue to be able to cover up, perhaps because you do not have the means or wherewithal to fight them in court.

If you think this is just a totally off the wall scenario, it is in fact a true story.  This outlines what is going on with us and our beautiful five-year-old daughter Anaya.  However, this is not a hospital, it is a Boston Public School.  It is not the Beauxfort Hospital.  It is The Mary Lyon School.  Why should we conceptualize these two contexts any differently?  This supposed model school has a dark side of its story.  Its founder originally sold BPS on the idea of the school on the proposal that it would save special education costs.  We now know something about how it is going about doing that.

Our daughter has had only one year of kindergarten and instead of growth and a sense of joy in life, she has had a trauma that will undermine her confidence and security for a lifetime.

The law obligates the school system to work with children with disabilities.   Unfortunately some resent the responsibility that the law forces on them.  What would a business do if they were legally required to give you service, but did not want to?  Reverse customer service of course.  They would do everything they can to make the "customers" miserable.  The general consensus among parents we have talked to, is that to BPS, parents of special need children are the enemy.   What we have at BPS, among the central office special needs administrators, is a culture that is not only perverse, but pervasive and dangerous to the well being of many special needs children.  A systematic strategy is pursued to minimize obligations and game the legal process as far as it can be pushed.  Well meaning staff is simply caught in the crossfire.

 Many highly taxed families (both financially and emotionally) simply drop out of the system.  We pay for all this pleasure five times over - for the need interventions the schools does not supply, for the government taxes at all levels, for the experts, advocates and lawyers to fight for our legal rights from the school, with the time and emotional hardship of supporting a special needs child in such an adverse climate, for the long term damage done to our children due to orchestrated ineptitude.  In most cases fighting for your child requires the full time efforts of one parent thus halving the families' potential earning capacity.  Being a parent of a special needs child is an unpaid full time job that is made that much harder by a system that is suppose to help.  It is crushing to be caught between the love of your child and the purposeful intransigence of a bureaucracy.  It would wreak havoc on any family, let alone one already highly taxed.

The consensus is that BPS has turned this kind of coordinated intransigence into a fine tuned art.  The harm it does is widespread.

 We are not the only family who is shocked at the highly orchestrated and organized practice by BPS (and other schools like it) of maneuvering families with children with disabilities out of their legal rights.  Unfortunately, all the parents are far too alone in their battles with the schools.  BPS is also a master at divide and conquer.  Nation wide our battles are also all too individual.

And why restraints?  Other families have been shocked at the use of restraint with their children at the Mary Lyon School.  This school was meant for students with very different needs - extreme behavior problems.  But BPS takes advantage of wiggle room in the law and their ability to deceive parents as just one of their many ways to "dispose" of their responsibilities.  One family in the Mary Lyon School had to get a court order to force the school to stop using restraint with their child, and it took years.  I have seen children held face to the ground, an aid's knee in their back, their arm twisted behind their back.  It was obvious this was systematic staff training.  At the times I saw these things I just knew too little to make a judgment.  I have since learned that the use of restraint at the Mary Lyon School is a dirty little secret that other administrators on occasion only can whisper about under their breath.  In our case, I believe the use of restraint offered BPS a cheep substitute for the trained one-on-one aid that our daughter really needed.

If this has been a hospital malpractice would be one of the most minimal charges one could level.  A class action suite would follow.  But for some reason, being a school, they seem to be given the maneuvering room to get away with this kind of thing.  But also few parents want to speak up in fear of retaliation towards their children.

Now we want a transfer our daughter OUT of The Mary Lyon School.  And BPS has refused.  Their method is to force a legal process that can take years, with even more lost precious intervention time as well as money and effort.  We have learned that it is standard practice for them to do this to children and parents, and then try to discredit the parents when they complain.  They have noting to loose, and that is the biggest part of the problem.  Getting rid of responsibilities meets their goals.

For those of you who don't know, the issuance companies are somehow capable of mostly passing the buck by calling the needed interventions an education problem.  Why then is not physical therapy from an accident an education problem?

What a Kafkaesque nightmare this is.

This is no urban myth.  It happens time and again.  I would be happy to send you any more information you might ask for.  You can reach me at barrygrushkin@CS.com

Unfortunately, our story is emblematic of a far too common problem.  The current laws are regrettably instrumental in creating painful fights between schools and parents of children with disabilities, and often with parents already strained by their child's needs.  For some reason parents have not yet been able to join forces to work as a team to challenge the laws and change the behavior of all too many school systems.  What I do not understand is why are not parents and schools working together to push for the funding needed so their would not be such a structure of conflict, where these insidious games need not be the norm.  Unfortunately, the aggressive outspoken parents general do not land in the school district that could use the most input.  Even so, Boston is one of the few school districts in the country without an elected school board.

If you are shocked, please help.  Please send an email to Boston Public Schools asking that our daughter Anaya be transferred to another school.  Please send the statement here to other people who might be willing to help.  Consider sending a copy to other citizens, taxpayers, parents, clergy, media, leaders, and/or elected officials.  If you know of other parents in BPS or with similar stories, let us network.  I am sure there are many other stories to hear.

A sample email or letter is below.  Please send me a copy (cc:) of with your correspondences.  I would like to track what is sent. 

 our time on this would be much appreciated.

hanks so kindly.

I just wish someday I would hear Anaya spontaneously say, "Hello Daddy," a wonder and a blessing most fathers take for granted.

Sincerely,

Barry Grushkin, father of Anaya Grushkin

 

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Sample Letter

Thomas W. Payzant
Superintendent
Boston Public Schools
26 Court Street, 7th Floor
Boston, MA 02108
Phone: 617-635-9058

Dear Thomas W. Payzant:

It has come to my attention that the parents of Anaya Grushkin, a child in a Boston Public School (BPS) feel that they and their daughter have been substantially mistreated by the Mary Lyon School.  A consequence has been high-levels of anxiety and symptoms of Posttraumatic Stress Syndrome for their daughter.  At the most resent Team Meeting the child's psychologist reported to the school that unfortunately a not too uncommon consequence of inappropriate interventions for children with her disability is suicide.  The Mary Lyon School may be a good place for some students.  However, it is not for Anaya.

It has been two years since Anaya's parents approached BPS.  It is about time you gave Anaya an Education Plan that corresponds to expert opinion and a placement where she can feel safe and learn.  Why is it that you have decided to fight parents rather than work with them?

The parents are have pleaded with BPS to transfer Anaya either to the Baldwin Early Learning Center or the Mason School, both Boston Public Schools, where they feel there is more experience with her disability.

We cannot understand why BPS needs to oppose the wishes and wisdom of Anaya's parents and their experts.  They alone should know what is in Anaya's best interest.

Your opposition is at odds with what is good for Anaya and human decency.  The parents have two highly regarded experts who feel The Mary Lyon School is inappropriate for her disability, one who had an opportunity to observe that she has substantially regressed since entering the school.  On the other hand, BPS can offer no one with expertise in her disability that recommends she stay at the Mary Lyon.  The parents feel duped into allowing their child into a program they now know is both inappropriate and harmful to her.  The Mary Lyon School represents a very painful experience for Anaya.  Her parents have told her she will never have to go there again. 

The Principals at both The Baldwin and Mason Schools, to BPS schools, have stated they would welcome Anaya into their respective programs, and have agreed that their programs are more appropriate.

The decision, however, is being made by BPS administrators totally lacking necessary expertise.  This is contrary to law.  I would like to know why you are forcing a long legal battle that will cost the parents and the taxpayers money that could be better spent on interventions and programs for Anaya and other students as well.

A simple transfer and a willingness to work with experts in her disability will go a long way to remedying the situation.

When you deny the parents a transfer to a school they believe will better serve their daughter's needs, it is very hard to believe that BPS has the child's best interest in mind.  Your delay is doing harm to a defenseless child. 

We hope you will reconsider.

Thank you kindly

Sincerely,

 

[Your name]
[You title if you can lend it.]
[Where you work, if you can mention it.]

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© Barry Grushkin, father of Anaya Grushkin All Rights Reserved