Dumb Ways to Die

Melbourne, Australia’s Metro Trains’ latest safety campaign has gone viral.  They hired a local artist to sing this little ditty which will most certainly become an earworm, and they added a much needed dose of humor to the serious topic of “Pay attention around trains, stupid, or you just might die a horrible death!”  They’ve pulled it off magnificently! The song is brilliant, the animation is, dare I say, morbidly cute, and I got the message.  Every time I stand around a train, I will now be singing, “Dumb ways to die…

What I really like about this viral video campaign is that it’s wonderful for children with cognitive impairments, mental health issues, and autism spectrum disorders, too.  It’s an easy song to learn and sing, and I could easily sing this song when I’m trying to get a child to hold my hand in a parking lot.  It might sound like a morbid song to sing to a child, but, if you’ve ever spent time with a child on the autism spectrum prone to running into traffic, then you’ll know how quirky their sense of humor can be.

Dumb Ways to Die“….If only for your entertainment.

No Child Left Behind

I visited an attorney yesterday.  I wanted to try to understand what Grace’s rights are.  If I’ve read the state’s statutes correctly as well as IDEA, then her school district is in violation.  I don’t understand how a school district can break the law–both state and federal–and not be held accountable in some way.  I tend to be naive.  It’s my nature.  I will unfailingly believe that people are good.  I will usually look for the best in others.  I actively shun cynicism.  My conclusion has been that Grace’s school district has been operating under extreme ignorance.  I have pitied them because I thought them stupid.  I have felt angry because they have violated the Law of the Land and deprived a fragile child her education because of what appears to be an almost willful maintenance of their own obliqueness.

I have been educated.  The school district is no more stupid than I am short.

Let me acquaint you with Thompson vs. Board of Special School District No. 1, 144F.3d 574, 579 (8th circuit, 1998).  The Thompson ruling, as it’s known, states that “if a student changes school districts and does not request a due process hearing, his or her right to challenge prior educational services is not preserved.”  What does this mean because it sounds reasonable, right?

It means that School District A could deny little Billy an IEP evaluation which is a violation of a federal law (IDEA) which they would know.  They would say that they want to observe Billy for a few weeks to see if he even qualifies for an IEP evaluation, but how can a child qualify to be observed to be observed for a disability? It makes no sense.  Nonetheless, this is what School District A will tell little Billy’s parents.  Little Billy’s parents will then say that he is a fragile child.  He needs accommodations.  He can’t complete his homework.  He isn’t able to complete a full school day.  He isn’t able to ride the bus.  School District A will ignore all communications from Little Billy’s parents.  Little Billy will deteriorate quickly.  Little Billy will not be able to go to school.  Little Billy will miss more than 15 days of school, and little Billy’s parents will inform the school that they are legally bound to provide him with education under IDEA as well as the state’s statutes.  School District A will acknowledge nothing.  Finally, School District A will propose a meeting to discuss an IEP evaluation, but little Billy’s health condition is not taken under advisement.  The proposed IEP evaluations are not appropriate for little Billy, and the IEP evaluations need to be amended in order to proceed all the while little Billy is not in school.  He is getting sicker and sicker almost by the second.  Finally, little Billy’s doctor admits Billy into a hospital for treatment.  As luck would have it, there is a school at the hospital, too, and little Billy is thrilled to be learning something during his time at the hospital.

When Billy’s parents ask the school about continuing the IEP evaluation, the school informs his parents that little Billy is no longer their problem since he was moved out of district.

And this is where the Thompson ruling comes in.  Because little Billy was moved out of district for medical treatment, little Billy’s parents can no longer take action against School District A for their flagrant violation of federal and state laws.  And, School District A knows that.  What’s more, they knew it all along.  They knew that little Billy was a fragile child who would eventually crack and need either 1) inpatient care or 2) partial hospitalization, which would absolve them of all illegal wrongdoing.  This is exactly what is happening to Grace.

Now, you might be saying: States CANNOT violate federal laws! They CANNOT pass legislation or engage in jurisprudence that violates federal regulation.  You’re right.  They can’t.  In the 8th circuit, however, they are doing that very thing with the Thompson ruling, and disabled children are being denied equal protection under the law.  Not to mention that this is completely unconstitutional.  It’s interesting to note that the 8th circuit is the only circuit in the nation that has confirmed this ruling.  Every other circuit has rejected it by not confirming it through jurisprudence.  In my state, however, judges have used this ruling to allow school districts to deny profoundly disabled children services.  Not only that, they have allowed districts to repeatedly violate IDEA without accountability, thus, robbing IDEA of its purpose.

So, what now? Well, let’s go back to little Billy.  What will happen to little Billy after he gets out of the hospital? What if little Billy even gets an IEP evaluation AND the much coveted IEP while he’s in the hospital? Well, little Billy will go back to his district carrying his shiny, new IEP, and School Distract A can say whatever they want to say.  They could say, “Nope.  We think we want to do our own evaluation.  We disagree with that one.  We don’t like it.”  They could even just say, “Screw you! We won’t give you any services at all!”  They could say, “We’ll give you partial services.”  They can do whatever they want to do in the 8th circuit particularly if they have a fragile child because they know that if they stall, balk, and drag things out long enough, then that child will end up in some kind of facility out of the the district.  Due to the Thompson ruling, they will then be untouchable.  If School District A is really horrible, and a parent moves them to a private school for help WITHOUT seeking legal help in the form of a due process hearing before leaving, then School District A is in the clear for their lawlessness.  One can lodge a complaint with the Department of Education.  What will they do? Investigate? Find that School District A was, in fact, in violation of IDEA.  Tell them not to do it again? What is going to motivate School District A to stop depriving disabled students like little Billy of services and a FAPE when there is no accountability?

In the midst of all these stall tactics, it’s little Billy who didn’t get an education.  There is a school district in my state who behaved just like School District A for four years.  A little girl did not receive her education for four years because of one school district’s arrogance combined with the Thompson ruling.

You might ask the question that I’m asking: Why? Why on earth would a school district behave like this? Money.  According to IDEA, a child with a disability must be provided with a fair and appropriate education (FAPE) in the least restricted environment.  If the least restricted environment for little Billy is a hospital setting, then who do you think has to pay for it? The insurance company, Billy’s parents, or School District A? School District A has to pay for Billy’s education.  This is what it comes down to.  If Billy’s parents, however, move him to the hospital on their own accord, then the parents pay for it.  This is why School District A refused little Billy any sort of services or accommodations out of the gate.  They knew that they were in violation of a federal law, but they also knew that they would be untouchable once Billy was out of district.  And, they wouldn’t be out of a cent.  Are you getting it?

They also wouldn’t be out of another special education for another “retarded child”.  Who cares about retarded kids anyway?

I am not okay with this.  I am really not okay with this.  It will take a few years, but I fully intend to do something about this.  A few of us are going to do something about this.  I’m not just talking about my daughter.  I’m talking about the 8th circuit and this ridiculous ruling that has allowed administrations to deceive taxpayers into thinking that money is being saved.  No Child Left Behind?

Not if I have anything to say about it.

Gray Matters

This is an article worth reading.  I recommend it because it sheds light on the complexities of the role of government, schools, the healthcare system, and the mentally ill.  There was a comment made on my last post regarding entitled parents who essentially muddy the waters for the rest of us with legitimate needs.  My business partner and I discuss this issue, and it is a reality.  It’s not the foremost problem, however, when the system is fundamentally flawed.  The entitled parents are like the side shows at the circus–a red herring.  If you want to know who might be in the Big Top, then you have to look into the three rings.  For that, I’ll let former mayor and six-term legislator Paul Gionfriddo be the Ringmaster.  This article originally appeared in Health Affairs and was republished by the Washington Post.  For more information about Mr. Gionfriddo, you can find him on his blog which, admittedly, I have not read.

My son is schizophrenic. The ‘reforms’ that I worked for have worsened his life.

Malfeasance

Okay…so, I tried to be cuddly and snuggly and kissy last night with my husband, and I nearly puked.  Quite literally.

The stress is eating me alive.

It’s not the stress of my daughter.  Strange as it might seem, I can handle that.  She’s mine.  I love her, and I have a high tolerance for outlandish human behavior.

What has pushed me to the edge is her school district.   The last time I came upon this kind of malice and total disregard for the well-being of human beings, I was sitting across the table from lawyers representing an auto insurance company.

By law, specifically the Individuals with Disabilities Education Act 2004 (IDEA 204), a school district is obligated to provide a fair and appropriate education (FAPE) to every child in their district.  If a child is suspected of having a disability, under IDEA, that district is bound to evaluate (more specifically under the Child Find clause of IDEA) that student and provide an Individualized Education Plan (IEP) and the appropriate accommodations which will allow that child to learn.  Under IDEA, a schizophrenia spectrum disorder is a disability, and my daughter needs an IEP in order to be educated.  She is unable to attend school more than three hours a day.  She cannot attend school in a mainstream classroom anymore.  Currently, she needs either 1:1 tutoring or she needs, at the least, a self-contained classroom with no more than 8 to 12 students with a high teacher to student ratio.  My child has deteriorated quickly in a year.  It’s rather stunning.  Some days, she’s not even functional.

Last year at this time, we were, unbeknownst to me, just in the beginning stages of prodromal schizophrenia.  Last Saturday, she tried to crawl under a table at a restaurant because of “The Men” who follow who everywhere.  Her antipsychotics and mood stabilizers still need tweaking.  It will be like this until she’s at least 18 years-old.  She just turned 12.

You would think that the special education teachers at her school would want to help her.  They don’t.  They don’t care.  They denied her an IEP evaluation.  Twice.  I have pleaded with them for help.  I told them that she was actively psychotic.  They told me to just send her to school, and, if she needed a break, then she could go to the break room and play with her fidgets.  I told them that she couldn’t be in a room with windows or mirrors because she is terrified of them, and they refused to listen.  I told them that she had been hiding in one of the school’s bathrooms to get away from “The Men” during school, and they were unfazed.  Did anyone know she had been in there? I told them that she was getting lost on her way to Language Arts class and needed help.  I told them that she is unpredictable.  She is unreadable–unless you’re me.  I told them that she might harm herself.  I told them that she is paranoid and delusional.  “There isn’t enough evidence for an IEP evaluation.  She looks fine”

Grace missed over twenty days of school in the first two months of school.  Her psychiatrist even sent the school a letter insisting on a special placement in a self-contained classroom.  He even defined psychosis and clearly stated that she has childhood-onset schizophrenia.  The school had no response.

I stopped sending Grace to school.  The school didn’t care.  I can’t send a psychotic child to school.  What would happen if Grace had a psychotic break in her classroom? What would happen if a student came into class wearing a cowboy hat or a bowler hat, as odd as that sounds? Middle schoolers, however, do strange things not the least of which is wearing a bowler hat.  One of the men who follows Grace (when she’s psychotic) wears a cowboy hat.  The other two wear bowler hats.  Can anyone predict what she might do? No.  She has stabbed herself.  Would she stab someone else? I have no idea.  She tends to be a runner, but what if she finally decided that she’d had enough of this harassment.  What if she hurt another child in a psychotic state, thinking that child was one of the men who stalk her on a daily basis? It is the school’s job to make sure that every chid is safe once they are within the boundaries of their property.  Clearly, they have failed.

We’ve had to begin consulting an attorney.  I see her on Monday.  We already have an advocate through a state agency.  This advocate does have some power as they represent a state agency that makes recommendations that go on permanent record.  One doesn’t want to piss off this particular state office.  The school’s response? Obstruction.  I spoke with Grace’s advocate this morning, and she described the school district’s treatment of Grace as “beyond the pale”.  One social worker from a neighboring district who got word of this situation gasped and said, “Shame on them!!!”  Another special education teacher from yet another school district who heard about our school district’s deplorable treatment shook her head and hissed, “Douchbags…”

I’m not some entitled parent.  I just want Grace to have a FAPE, and I don’t understand how a school psychologist, a speech pathologist, a special education evaluator, a superintendent, an assistant principal, and a director of special education services can deny a child like Grace the accommodations that she needs to get that education.  But, they are.  What’s more, I’ve learned that they are doing this very thing to other children, too.

And, I don’t like it.  The injustice of it is burning a hole in my gut.  The problem is…what they are doing is not only unjust.

It’s illegal.

The Matter of Knowing

I don’t want to make this post about venting, but I admit it.  I am feeling very frustrated.  I did something, in retrospect, I should not have done.  I talked to The Cousins.

Who are The Cousins? They are my mother’s first cousins.  They are well-meaning.  They speak sincerely.  They are genuine.  “We love you so much.”  But, I never see them.  I don’t know what their definition of love is.  To me, love requires an action.  It isn’t just a word or a feeling.  It doesn’t judge or exclude.  It is empathetic.  It is active.  It isn’t passive.

We are in quite the pickle with the school district.  It is getting worse on a daily basis.  So,  being the faithful person that I am, I requested prayer from a small group of people–The Cousins included.  I didn’t expect that they would call me at 11 PM last night.

“We hope it’s not too late to call.”

Ordinarily, I am in bed at 10 PM lately.  I’m just too exhausted to stay up late.  Last night, however, Grace seemed to be on the manic side so we were up.  She wanted to play a board game at 11 PM.  My husband and I said ‘no’, and we were trying to shepherd her in the direction of bed.  She still won’t sleep in her own room, but if we can at least calm her down enough to get her to sit rather than pace the house, then that’s an accomplishment.

“We got your email.  We’re all here together.”  I had only emailed one cousin, but, apparently, all three cousins are vacationing at a timeshare on the West Coast.

They didn’t ask how we were doing.  They didn’t ask what we needed as a family.  They said that they were praying that God would heal Grace…and the other one, too. (My autistic daughter).  I needed to thank God for his healing in advance because that’s what you’re supposed to do.  I needed to walk in victory and rely on God to heal Grace…oh, and that other kid.

I’ve been in this evangelical culture long enough to know what was really being said.  They really think that Grace is being oppressed by something evil.  Something demonic.  This is a very common view in evangelical culture.  It’s also common in the Catholic church.  Mental illness is caused by demons.  It’s a sign of “demon possession” or, as the evangelical Christianese terminology calls it now: a stronghold.  It’s all the same thing.

This is not new.  In fact, this view has been with the church for as long as there has been a church and before.  It’s rooted in the philosophy known as Gnosticism.  Simplifying it, matter is evil, and one is emancipated from matter through gnosis, or the attainment of knowledge or learning.  Gnosticism became a coherent movement in the context of the Christian church in 2nd c. CE.  Gnosis, this knowledge which will free a person from all evil matter, can be intuited or even secret.  It isn’t subject to a fixed set of doctrine or approved dogma.  There were established gnostic teachers and cults, and each teacher had their own philosophy.  Recently, there was an emergence in interest in Gnosticism when Elaine Pagels published her book The Gnostic Gospels.  There is nothing new under the sun.

The issue with Gnosticism in evangelicalism is its cruel subtlety: If you are mentally ill, then it’s because you must have a demon.  Pray for the healing of the body because the body is evil and fallen.

I’m not here to get into a philosophical discussion.  This is, however, one behemoth reason why there is stigma attached to mental illness.  Gnosticism.  It is alive and well today.

Like it or not, we have to come to terms with the causes of mental illness.  Our bodies are not evil.  And, there is no secret knowledge that will liberate us from our suffering.  As for the demons? If only it were that easy…

Hide and Seek

She’s still not stable.  Two days ago I finally saw why people think that schizophrenics have multiple personalities.  She was roaming around the house weeping and mumbling.  Suddenly, she would stop and start talking clearly as if she hadn’t shed a tear.  Twenty minutes later she would pull her hair, stomp her feet, and say, “I’m BORED!!!! Tell me what to DOOOOOOOO!”  Then, the wailing, weeping, and rolling around on the bed would start all over again.  Twelve hours of this.  At some point she became paranoid and starting running around the house, hiding from the men that follow her everywhere.  “Mom, Mom! A man just walked up the stairs!”

I can’t let myself feel.  Nothing can come to the surface.

And then I heard this song.  And, I cried.  One year ago, she was the Grace I’ve always known.  Today, that Grace is nowhere to be found.  She went away, and, oh God, how I miss her.  It’s going to get better.  It has to.  Right?