Wednesday, April 22, 2015

HEADPHONES: Raising A Son With Special Needs


Need a sneak peek into Willie's brain? Well then listen to this perseverative loop he has been on:

Willie: "Teddy took my headphones. Mine are the M-50's. Teddy's are the M-40's."

Me: (After thoroughly checking with Teddy.) "Teddy does not have your headphones.  Those are the ones I ordered you."

Willie: "No, I had the M-50's. These are his, the M-40's.  He took mine."

And on and on he went for several weeks.

Until, on Saturday, I was with Willie in his house, Emerson House, in the basement.  And lo and behold, there was an empty box labeled Audio-Techinca Headphones: M-40's.

I gently nudged Willie with the evidence in front of both of our eyes.  He paused, thought for a moment, and finally confessed that he wants the M-50's.  They fit better.  And besides, Teddy has them. I quickly explained I would figure something out and get him the M-50's.

Two days later, Willie called me on the phone.  The first thing he said was: "Mom, Teddy has my headphones, the M-50's.  Get them back."

Willies' brain works so well in so many ways.

Except when it doesn't.

Tuesday, April 14, 2015

My Other Son's View: Raising A Son With Special Needs

Here is an article my Neuro-typical 19 year old son put on Facebook.  My words are irrelevant compared to the enormity of his message. I guess Willie has inspired him as well. With the utmost respect and dedication to my Teddy:


Reactionary Violence


theodore kupfer

My older brother has brain damage. Willie is 22, somewhat imposing, and regardless of the DSM edition you refer to, mentally retarded. He will read anything you put in front of him, he can hold a conversation about anime or heavy metal for hours. His appearance and demeanor don’t normally belie his condition: the frustration that comes with being mentally challenged manifests suddenly, erratically, and unpredictably. But boy, is it a show. Meltdowns punctuated by bold claims – “I’m going to kill you/myself/everyone” – come just five minutes after hearty laughter at Nickelodeon reruns. This kind of outburst can terrify an outsider, but simply explaining Willie’s behavior and its cause tends to put any unease to rest. That is, unless the outsider happens to be a police officer.
An officer confronted by Willie during a bad moment could easily forego the taser and reach straight for his pistol. The Atlantic recently published an article about the shooting of Jason Harrison, a Dallas resident with schizophrenia. He was off his medication, and his parents needed help getting him to the hospital. They called the police because they needed peacemakers. Here, the police officers were meant to be public servants. Their duty was to help a family mitigate and control a scary situation. Yet the officers misconstrued the proverbial saying ‘to serve and protect’–which usually refers to citizens who the police are responsible for, including mentally ill people and their families–and took it to refer to themselves. When the Dallas police had arrived at the house, Harrison was standing in his own doorway as he absently fumbled with a screwdriver like one would a pen. Any person who says that they wouldn’t be scared if someone ran at them with a screwdriver is a liar. Video footage shows that he held it in both hands and made no sudden movements. The officers screamed orders at Harrison, who had no reaction. It’s easy to judge from the sidelines when you have minutes to critique a decision. The officers raised their guns and shot him five times in the chest in the time it took you to read this sentence. The taser is not always effective. Each of the Dallas Police Department’s subsequent explanations for the shooting revolved around the officers’ imperfect judgments and the situation’s volatility, culminating in the ultimate disavowal: God knows we make mistakes because we are people too.
Sometimes, officers are quick to use their guns because of fear. Other times, officers are quick to deploy chokeholds in an effort to subdue. Anyone who lives on a college campus, in a city, or in a household with internet access should know this from recent news. In 2013, a 26-year-old man with Down syndrome was choked to death by police officers in a movie theater. Ethan Saylor had just seen Zero Dark Thirty, and wanted to see it again. Officers were called to help escort the ‘noncompliant’ – see how responsibility can easily be shifted off of the shoulders of public servants and onto someone who cannot legally be responsible? – man from the theater. The officers, with little deliberation, handcuffed Saylor and pressed him face-down into the theater floor; he died of positional asphyxiation not soon after. Saylor’s urge to see the movie grew into a ferocious frustration, which he could not control. But nothing about his behavior suggested that he was a threat. Officers who follow their training1 ought to understand this, but all too often, they don’t. And all too often, they disclaim responsibility in a way only appropriate for the mentally disabled.
Willie’s vitriol can be grating to hear, but our family generally doesn’t take his most extreme threats very seriously. After all, for the most part, he is happy, and after a couple hours of alone time, his good spirits return. Still, episodes of reactionary violence dot Willie’s history. These are meltdowns spurred on by fleeting moments of self-awareness: moments when he realizes the tragic facts of his own life. Willie is subordinate to his three younger siblings; Willie lacks the ability to take care of himself in any meaningful way; despite his ambitions toward adulthood – “Can I have a beer? Can I have a cigar?” – Willie needs constant, suffocating supervision. These challenges conspire to create a feeling of utter helplessness: Willie has no means to convey or confront his frustration other than with violence. Because we understand the causes behind Willie’s meltdowns, they don’t suggest to us that he’ll ever take the extreme steps which he so often promises to. But he could. Mentally retarded and mentally ill individuals can sometimes pose a grave threat to their loved ones or others. We lock our knife drawer because when Willie’s frustration builds, there is no mental mediator, no rational voice saying ‘calm down.’ Someone with a mental disability sometimes has no way not to give in to their escalating tempest of emotion. When this happens, the justice system treats their situation with scant compassion and less understanding. Even when granted the time and space to learn about and appreciate the mentally disabled person’s plight – two things police officers cite when defending their irrational reactions – the justice system frequently fails. In this case, the problem lies in prosecutors.
Not coincidentally, and unfortunately, treatment of the mentally ill remains consistent no matter which of the justice system’s segments are involved. Self-interested prosecutors push for death penalties with zeal, regardless of the defendant’s mental countenance. Listing the amount of mentally retarded or otherwise disabled people who have been executed would take too long.2  Recounting the story of Ricky Ray Rector – who was deemed competent to stand trial despite his evident mental challenges – who didn’t eat the pecan pie he requested for his last meal because he was “saving it for later” – whose conviction and execution was a victory for those that prosecuted him – illustrates the issue quite neatly. Any competent lawyer could construct a convincing prosecution if – God forbid – my brother were to act on one of his more extreme threats. As someone who gives off first impressions of being affable and smart, Willie’s behavior can belie his mental challenges. He is, quite frankly, an easy target. Here’s a man who can read the encyclopedia. Here’s a man who has made these threats before. Here’s a man with a history of violence. He knows where he is, who he is, and what he has done – and he should be held responsible.Competent to stand trial? Check. Guilty? Hypothetically, check. Deemed responsible for actions for which responsibility is ultimately a case of bacterial meningitis when he was two? Check. And dead, at the hands of the state? Check.
It is trendy to say, “America has a mental health problem!” and to argue for more funding for special education programs, or mental illness-aware background checks before one can buy a gun, or to simply declare their sentiment. Sure, America has a safety problem when its mentally ill people own guns. Consequences can be tragic. America has a fiscal problem when its mentally ill people don’t have an appropriate guardian or appropriate educational services. Their states can be tragic. But America has a far more tragic problem when its institutions forego their responsibility for the mentally ill and treat them with callousness. America has a justice problem when it treats mentally challenged people like criminals, whether on the streets or in the courtroom. Police officers and prosecutors shift responsibility onto those who, by virtue of their heartbreaking condition, cannot be responsible for their own actions. When these people bear the burden of the state’s incompetence, something is seriously wrong.
The schizophrenic who fumbles with a screwdriver and gets shot for it bears the burden of police cowardice. The cinephile with Down syndrome who gets choked to death because his mom needed help getting him out of the movie theater bears the burden of police ignorance. He who can’t control himself sometimes, he who threatens as a defense mechanism, he who can scare people in a restaurant or on the sidewalk – he who is my brother, in the eyes of the police officer – should not be the police officer, in the eyes of my brother.
1. http://www.theatlantic.com/health/archive/2013/10/how-police-officers-are-or-aren-t-trained-in-mental-health/280485/ details the status of police training programs designed to help them deal with mentally challenged individuals. The officers who receive this training and don’t follow it are culpable, but if officers haven’t received the appropriate training, it is that policy which is culpable. Either way, there is a problem.
2. https://www.aclu.org/files/pdfs/capital/mental_illness_may2009.pdf orhttp://www.deathpenaltyinfo.org/mental-illness-and-death-penalty give some good examples.