Tuesday, September 29, 2015

Vulnerable: Raising A Son With Special Needs

Sharing something this current and intimate makes me more vulnerable than I am comfortable with. But I imagine this could help other families with their struggles and that is the point of this blog.  So please read the email I sent to Willie's school today, after learning yesterday about a physical altercation between my precious Willie and another student. Thanks ahead of time for your sensitivity. I have changed the names for confidentiality.


HI Peggy,

I just wanted to give a bit of history about Willie and Jon and also about Willie himself. Charlie and I are concerned about the two of them being together now that there has been a physical incident.  We realize it is impossible to keep them apart and want to work with you all to come up with a some strategies to help Willie cope and to keep everyone safe, emotionally and physically.

First, Willie holds grudges. This is in part due to his "perseverative/anxious" thinking and in part due to his extreme sensitivity to people who are mean.  Second, Willie is afraid of mean people, even if they are not really scary.  He feels much more vulnerable than he lets on.  Jon and Willie, as I stated, have a long history of not getting along.  Willie's part in this is taking Jon too seriously and getting stuck in the negativity.  It is true Jon has teased Willie and said mean things to him in the past.  I have witnessed how Jon presses Willie's buttons on purpose.  In a cognitively intact individual, one could infiltrate these episodes and reshape their thinking.  One could try not to personalize these episodes.  But with Willie, he stews on them, has no perspective, feels hurt, is actually afraid, and gets angry.  That being said, you may already have intuited all of this.

On to some possible solutions: Willie should definitely talk about this with his Therapist.  I have copied her on this email and will contact her of the situation today.  Seeing that this situation goes way back and is deeply embedded in Willie's psychology, please tread sensitively with Willie.  He clearly cannot hurt Jon and we will speak forcefully with him about this.  However, he needs extreme care when looking for solutions.  One strategy that works with Willie is to validate his feelings that he may not either be aware of himself or at least not have vocalized.  Another tool is to get Willie to come up with solutions.  Something like: "Jon will be in your class, so what can we do to help you be tolerant of him?"  Another possible and useful statement is: "When you feel yourself scared of and/or angry towards Jon, what can you do to keep everyone safe?" Finally, Willie has responded positively to social stories about tough situations in the past. I urge you all to create one for him that reflects his complicated feelings, clearly states that physical aggression is forbidden, and provides better alternatives to coping with these negative feelings. 

I am racking my brain for other strategies, as this is definitely a pattern for Willie.  We still hear about a little girl in 3rd grade who frightened Willie.  There is a long list of others who Willie perceived to be mean and scary, some real, some imagined.  We certainly want Willie to learn to deal with people he doesn't like.  And please know, we are saddened and upset that Willie shoved Jon.  But we also want you to understand what we are up against in Willie's history.  I have taken the liberty in sharing this issue with Ava and Lily, as I am sure Willie is continually talking about Jon, as that is his pattern of perseveration  The more teamwork the better.

I appreciate your patience with my suggestions and hope you are not offended as you did not ask for my input.  My mama bear is up on two legs and cannot keep her mouth shut.  Thanks for your sensitivity to Willie in this matter.

Kim

Saturday, September 5, 2015

A Gentleman: Raising A Son With Special Needs

We live in a rhythm with Willie. Every summer he spends at least 6 weeks home, to return to his Camphill program in September.  Willie's anxiety begins to mount on his first day home about when he has to "Go Back."  Even though I make him a beautiful visual calendar to show him the amount of time home, his anxiety never goes away about "Going Back." Willie really struggles with time and 6 weeks ofttimes must feel like 6 days or even 6 hours to Willie.  Even though he likes the Camphill programs he attends and is a valuable community member, he still is haunted by the anxiety of "Going Back."

So today was the day. Came to soon for Willie I am sure. Never comes soon enough for me. Willie had his best summer home ever.  His bouts with anger and supreme negativity were less than usual. Willie's interactions with his siblings continue to improve as he develops and certainly as those 3 siblings mature as well.  We spoke endlessly last night, while out for a very enjoyable and rare dinner at a restaurant, about all the activities and people to look forward to back at Soltane.  I detailed how his second year at Soltane brought with it clarity, as he knows what to expect.  It didn't matter.  In the car there, he barely spoke except to tell me he was still nervous.

In years past, Willie would linger in the car until a friend would come egg him out of his nervous seclusion.  Last year Willie wouldn't tolerate the parent/student meeting and refused to join. This year, he got right out of the car and immediately found Stacey, the co-worker he adores, who he will be living with this year.  He emphatically told me he would not attend the meeting.  I let it go, for that is what one must do as Willie's parent.  To get into a power struggle with Willie about something un-crucial, especially with his agitated state, is just something you don't do.  I told Stacey to handle it.  I was expecting his typical refusal.

Instead here is what I saw when I was on my way to such meeting:

Frankly I couldn't believe it.  And after that, things just got better and better. Willie sat in the meeting the whole time, over an hour.  He wouldn't introduce himself when asked, but did stand up with the rest of his house during introductions.  It was amazing.

Raising Willie has been the most challenging thing I could ever have imagined being asked to do.  I write lots about how hard it is and how sad I am.  But today was a stellar day.  I am wrapping this around me like a cozy blanket and just reveling in this feeling of peace, for as long as I can.

Oh and afterwards, after I spoke with Stacey about Willie's walking with her to the meeting, she said: "He is always such a Gentleman."

Tuesday, August 11, 2015

That Beating Heart: Raising A Son With Special Needs

Yoga is my exercise.  Besides the physical strength and endurance, it forces me to make intentions and meditate on them.  I am no meditator, but yoga seeps into my heart and brain and helps me focus on positive intentions. Sounds so new age, but it works.

Anyway, at the beginning of the summer I focused on an image of iridescent light in my belly which symbolized rejuvenation. It sort of worked to help me dig deep and get refueled for my role of being a Mom to 4 kids, including Willie.

But now that Willie is home for 5 weeks, I had to switch to another intention, mantra, and focus: A beating heart.  This image represents to me persevering every day despite hardship and suffering. It helped that my yoga studio had a powerful painting of a heart right in my view this morning.  I have been pondering the idea of marching forward every day, rolling out of bed, getting Willie more food, cleaning up his room again, surviving his emotional meltdowns and assassinations, and resisting being pulled into his negativity.  At first the images I saw were waves on an ocean, as they keep on coming no matter what. But waves are too magnificent, too peaceful, too relaxing.  The heart is better. It is bloody, ugly really, and a miracle all at once.  It doesn't have the luxury of stopping.  It is the epicenter of all life. Living is hard, harder for some than others.  My living includes pain. The beating heart doesn't care. It just keeps going. Marching forward through thick and thin.  It doesn't even care if you feel rejuvenated, energetic, or happy.

I love Willie. I cherish him and think about him constantly.  I celebrate and grieve him.  I worry endlessly about him dying from a seizure. I perseverate on what will happen to him when we are gone. I advocate for him.  I love him.  But I also have equally negative emotions as these, which are difficult to admit.  Even harder to write. So while my family all endures our 37 days with Willie at home, I will focus on that image of a beating heart. I am THE MOM and need to keep going everyday despite what I may be feeling inside. Yoga is my savior.  Namaste.

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.


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.