Wednesday, June 3, 2015
Expectations: Raising A Son With Special Needs
It's summer weather and I bought a dress that requires a strapless bra, on a whim at Target. As I was imagining how fun that dress would be to wear, my thoughts wandered to the only strapless bra that I own: the one I wore to my wedding 24 years ago. And I knew it would still fit me, even though it lay quietly untouched year after year. And then my associative thinking went to how I am the same skeleton as I was 24 years ago, at least externally. In other words, I still weigh the same and thus the bra still fits. And I remember that day 24 years ago, one of my best days ever. How thrilling it was to have all that hope and expectation about the life my husband and I would create. And of course, then it really hit me: the fact of Willie. The sad, heart-breaking fact.
Because it is true, my life is wholly informed by Willie every step of the way. Twenty-two years of Willie and his trials and tribulations seeping into every cell of my body, being, and self. Twenty-two years of being a Mother to a Special Needs child. That role defining me first and foremost and getting in the way of all my other roles. Defining all my other roles. I mean seriously how can you get sad about your typical kid not making the team, being accepted into the gifted program, getting their heart broken when you have Willie and all his life and death concerns? Did he have another life threatening seizure today? Did we win the battle with the school district to provide Willie the best educational experience based on his complex neurological needs? Hard to get excited about the 72 your typical kid got on an exam or the angst brought on by hormonal acne.
This was not what I expected that June day, 24 years ago. It was a life full of kids for sure, but not one that included a Special Needs child. I dreamed about birthday parties, school graduations, typical American life concerns. I never imagined I would become adept in all things Special Needs in terms of seizures, hospital stays, IEP's, Neurological Damage, the rights of kids with Disabilities...
Who knew one dress could stir so many feelings and recollections?
Tuesday, May 5, 2015
Sorrow: Raising A Son With Special Needs
That sorrow that comes from seeing what your Special Needs son's peers are accomplishing is a doozy. Those typical and expected milestones. There you are at the playground, the grocery store, driving through the neighborhood, and out of the blue, it sucker punches you right in your tummy. Maybe it hurts more because you are innocent and not prepared, you left your armor off.
And I thought I was over all that comparing, that dreadful loss that comes to haunt you right in your face, time and time again. The pain that is your child with a disability. That shines a headlamp right in the face of all that he is not and can never be. Hasn't Willie aged out of this phenomena yet: after all he is 22 years old! I can recount so many times, when I saw his peers master cursive, win an award, go to prom, and other such typical milestones. I can remember how it felt to know Willie would never get these experiences. A guttural loss. A sorrow unspoken. That self-deprecation because shouldn't you just be happy with how well he was doing? Stop complaining and accept and celebrate his strengths. And by golly, I thought I was done with this.
Yet there I was, browsing through Facebook, and that old friend sorrow found me. Took my breath away. Made me feel as guilty as ever. For I love my friend and her lovely daughter, Carly, Willie's first best friend. I am proud of Carly for thriving at 4 years of college. I am impressed with her for she is about to graduate with a BA from a small liberal arts college. She has a bright future with countless opportunities open to her. I am just plain happy for Carly. Except it hurts. For this was supposed to be Willie too. This is the year he too was to graduate from college. Land a job. Start his adult life. Except he got Bacterial Meningitis and it wiped out the part of his brain that could ever go to college. And I live with that knowledge every day and mostly I am fine. For Willie is an adult now. He lives and thrives in a community of his own. He has other milestones he reaches.
So why do I feel so sad? Go away old friend sorrow. Leave me alone and let me be.
And I thought I was over all that comparing, that dreadful loss that comes to haunt you right in your face, time and time again. The pain that is your child with a disability. That shines a headlamp right in the face of all that he is not and can never be. Hasn't Willie aged out of this phenomena yet: after all he is 22 years old! I can recount so many times, when I saw his peers master cursive, win an award, go to prom, and other such typical milestones. I can remember how it felt to know Willie would never get these experiences. A guttural loss. A sorrow unspoken. That self-deprecation because shouldn't you just be happy with how well he was doing? Stop complaining and accept and celebrate his strengths. And by golly, I thought I was done with this.
Yet there I was, browsing through Facebook, and that old friend sorrow found me. Took my breath away. Made me feel as guilty as ever. For I love my friend and her lovely daughter, Carly, Willie's first best friend. I am proud of Carly for thriving at 4 years of college. I am impressed with her for she is about to graduate with a BA from a small liberal arts college. She has a bright future with countless opportunities open to her. I am just plain happy for Carly. Except it hurts. For this was supposed to be Willie too. This is the year he too was to graduate from college. Land a job. Start his adult life. Except he got Bacterial Meningitis and it wiped out the part of his brain that could ever go to college. And I live with that knowledge every day and mostly I am fine. For Willie is an adult now. He lives and thrives in a community of his own. He has other milestones he reaches.
So why do I feel so sad? Go away old friend sorrow. Leave me alone and let me be.
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.Wednesday, March 25, 2015
Two Tests: Two Very Different Outcomes: Raising A Son With Special Needs
Sandy, my 16-year-old, passed his Driver’s Permit test today. What a happy rite of passage: his first try too. What an accomplishment. It happened that this was the same day that Willie, my 22-year-old son with special needs, failed his IQ test. Who knew you could fail an IQ test.
Here's the backstory. Willie was granted a Consolidated Waiver which includes comprehensive funding from the government for his present and future programs. Now that was an accomplishment. What a process. So now he needed to have an up-to-date IQ test. I explained to the powers that be that this would be tough as he has lots of issues. But that he did complete an IQ test in 2004, would that suffice?
That answer was a definitive “NO!”
So today was the day. We went to the agency. We met the tester, a nice man, and I answered questions with Willie for the first 45 minutes. As his distress grew and grew, as the questions talked about his self-care and knowledge of the community, he became more more agitated. So that wise man said: “Why don't me and your mom go to the other room and finish the rest of this part?” Willie was relieved. You could hear his audible sigh of relief from Timbuktu.
So then we went back into the room where Willie waited and I left. Since Willie needs lots of support, we had talked all about the IQ test and how it just was a procedure he needed to go through. I brought some of his favorite books or rather he picked them out. I had a hopeful confidence that this IQ test could be completed, kind of.
Forty minutes later that kind man, who was testing Willie, came and found me in the lobby and said he was unable to complete the IQ test. When Willie was asked to count backwards, he refused. He shut down. When something is hard for Willie, this is a common reaction. After honest consideration and discussion, we left the agency. The first thing Willie said when we got in the car was: “Boy am I dumb." Yes, you could hear my heart breaking from Timbuktu.
Then of course we went to Target and out to lunch as promised. Willie picked out a new DS game. He had a deluxe mexican burger at Wild Wings. It was nice and cozy.
Two hours later, I took my other son to get his Driver’s Permit. The experiences were in stark reality to each other and a wake-up call to me about the differences between my non-special needs son and my special-needs son. Did Willie really fail his IQ test? Is that something that can really happen? And what will happen next?
Stay tuned…
Saturday, February 28, 2015
The Anti-Explosion Dance: Raising A Son With Special Needs
Willie hates to be shaved. He can't shave himself as his hands just don't work well enough. He says he likes the unshaven look. But really Willie hates the feeling of water on his face, that slimy soap. There's no such thing as shaving cream. That is not allowed in his sensory budget. He hates the feeling of the razor on his face. What if you cut him. Make him bleed. He just plain despises it.
So I plan for the shave. It is a meticulous and intricate process. You have to do it when he's in a good mood. You have to do it when he has something to look forward to. After a very good night of sleep for sure! You have to do it when he has been fed. You have to do it when he is distracted enough with something on the computer. "The Shave" requires quite a battle plan.
I failed recently. My hand is not working as I had surgery. My husband was to shave Willie. I didn't plan well enough. I asked my husband to shave Willie at the worst possible time, right before he had to go back to school. It was a desperate and terrible decision. I blatantly ignored all the regular rules about avoiding this explosion. He popped. He exploded. It was horrible.
And the worst part of these explosions, as Willie becomes an adult, is his self-recriminations. For always after he calms down, he hates himself for the tantrum. He punishes himself. He gets stuck in obsessive thoughts of self loathing. Each explosion scars his psyche, his self-confidence, his chance of happiness and peace.
That anti-explosion dance: the stakes are so high!
Saturday, February 14, 2015
Permanently Disabled:Raising A Son With Special Needs
I took Willie to renew his photo ID yesterday at the friendly department of motor vehicles. Actually the lady who helped really was friendlier than I had could have ever expected. As I observed Willie struggling to sign his name 4 different times on all of the electronic forms, it dawned on me how hard it must be to live with a permanent disability.
Of course, it didn't just dawn on me yesterday. Willie's hands just don't work. They never have. I try to describe his limitations to other people by imagining wearing thick mittens all the time. He has just recently been able to write his name in small letters, small enough to fit on those little computerized screens.
Two weeks ago, I had surgery on my thumb to help with debilitating and painful arthritis. Of course it is my right hand and that is my dominant hand. Living with a temporary disability, only being able to use one arm and hand, has shed enormous light on all those who suffer from permanent disabilities. My respect for those individuals has grown tremendously in the past two weeks.
While I watched my son Willie, struggle to write his name
on a small screen, I was really taken aback about what it must be like to live that way every day. As I struggle with my left hand to write words, my frustration and helplessness mounts and mounts. As I struggle to brush my teeth every day and to even put my hair in a clip, I wonder what it must be like to be like that all the time. And then I look at my son's teeth that are never quite clean, whose hair is never brushed, and I have a complete new understanding and appreciation of what it must be like to be him. To have a permanent disability.
Thanks to the talk writing feature on my iPhone, I am able to get this blog posted. For Willie to be able to use such technological advances, requires complex executive functioning skills that he too is lacking. But I'm getting ahead of myself. For that is a post for another time.
Of course, it didn't just dawn on me yesterday. Willie's hands just don't work. They never have. I try to describe his limitations to other people by imagining wearing thick mittens all the time. He has just recently been able to write his name in small letters, small enough to fit on those little computerized screens.
Two weeks ago, I had surgery on my thumb to help with debilitating and painful arthritis. Of course it is my right hand and that is my dominant hand. Living with a temporary disability, only being able to use one arm and hand, has shed enormous light on all those who suffer from permanent disabilities. My respect for those individuals has grown tremendously in the past two weeks.
While I watched my son Willie, struggle to write his name
on a small screen, I was really taken aback about what it must be like to live that way every day. As I struggle with my left hand to write words, my frustration and helplessness mounts and mounts. As I struggle to brush my teeth every day and to even put my hair in a clip, I wonder what it must be like to be like that all the time. And then I look at my son's teeth that are never quite clean, whose hair is never brushed, and I have a complete new understanding and appreciation of what it must be like to be him. To have a permanent disability.
Thanks to the talk writing feature on my iPhone, I am able to get this blog posted. For Willie to be able to use such technological advances, requires complex executive functioning skills that he too is lacking. But I'm getting ahead of myself. For that is a post for another time.
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