Down

Manic Depression's touching my soul,
I know what I want,
but I just don't know how to go about getting it.

Feeling, sweet feeling
drops from my finger, fingers
Manic Depression's captured my soul.
---Jimi Hendrix, "Manic Depression"

Swept chunks of wall from my son's bedroom floor this afternoon. Last night was another rough night in a string of many rough nights, more than I care to count, more than I want to remember. Last night he kicked the wall, and headbutt the wall, and made a hole in the wall. When I went to check on him he kicked me, and headbutt me, and may have made a hole in me if I had let him. He widened the hole in my heart, in any event.

No sooner do I fall asleep again than I am awakened by the pleas of my wife. "Sean... Sean... wake up! Matthew's beating me up!" I clear the fog, open my eyes, and see the shadowy figure of my son standing over my wife. But this doesn't make any sense. I have his room secured, by necessity. To let him wander overnight would be an invitation for all of us to receive assaults. I guided him back to his room where I was able to put two and two together. The hole he made led to a closet in my daughter's room. He widened it, he crawled through, he escaped.

Oh Lord, how long?

I'm losing ground
you know how this world can beat you down
I'm made of clay
I fear I'm the only one who thinks this way
---Nine Inch Nails, "I Do Not Want This"

People began to disappear, as if in a horror movie. Slowly, one by one. You returned from your break and their station would be empty. The rumors began to fly. They're letting people go.

And then they call for you.

Michelle Markel and Bob Gray sit in the HR office, Bob never saying a word. We're restructuring, Michelle says. It is now time to yank the rug out from under everything you hold dear. Get the hell out. Do not talk to anyone. Just go.

Yeah, like I'm going to let you touch any of my stuff, Michelle. I'm getting it, I'm saying goodbye to a few people, and then I'm gone.

Maybe you didn't hear me, numbnuts? Go. We have people you won't get past.

Oh, what the hell are you going to do, send Bob Gray after me? Running three miles an hour in his motorized scooter? Yeah, let him try.

I get up to go. They get up to make me stay. We face off. Oh, did I forget to tell you, Michelle? You don't get to win.

I got my stuff, I said goodbye, and on my way out I slammed the door. Surely that made me feel better.

Well, not really.

Two months after my beloved son was born, my tenure at NACSCORP came to an end, and with it my tiny social circle. And any kind of financial security I thought I ever had.

Jesus, Jesus help me
I'm alone in this world
And a fucked up world it is too
Tell me, tell me the story
The one about eternity
And the way it's all gonna be

Wake up, wake up dead man
---U2, "Wake Up Dead Man"

It's a girl! And what a girl she was. Nine pounds, 5 ounces. One more week and we would have hit ten pounds, I know it. Evelyn would be proud to have my daughter bear her name.

Rebecca Evelyn MacNair was born on September 25, 2002.

Evelyn Jean MacNair died on April 6, 2001.

Evelyn was a special education teacher.

When her namesake was diagnosed with autism, I shook my fist at God. And cried.

Sure could have used my friend Evelyn about now.

Just when everyday
Seemed to greet
Me with a smile
Sunspots have faded
And now I'm doing time
Cause I fell on
Black days
---Soundgarden, "Fell On Black Days"

Men deal with it too.

And that's all I got to say about that.

Why ask why?

Why?
---every little kid in the world

Because I said so, that's why!
---every parent in response

I started this blog in 2005 mainly to write about issues of faith and my response to them. I took the title "The Pardoner's Tale" as a reference to the Pardoner in Chaucer's Canterbury Tales: a man who gives the appearance of a righteous preacher, but behind the scenes cares nothing for the people, he just wants their money. The insinuation being that although I like to call myself a man of faith who has been down many roads along the search for truth, there is always something (or someone) hiding behind the mask that makes it clear- the things we believe aren't always as solid as they appear.

In the course of writing this blog I've had many responses. The one I've received more than others, at least from religious people, is "when are you going to settle on one thing?" The second response is like it: "You know, there are no perfect churches." You can substitute any type of organization, political party, or person for the word "churches", but the gist is the same- you are expecting perfection, Sean, where perfection doesn't exist. Don't ask why. Don't expect change. In the popular parlance, "it is what it is."

But the question "Why?", and the related question "Why not?", are ultimately at the root of everything- all art, all literature, all scientific discovery, and yes, all theological and philosophical reflection as well. Why keep trying to invent a light bulb, or an airplane, or a radio, when previous experiments have ended in failure? Why not? Should we investigate why some children are born disabled? Why not?

Someone asked themselves why women should get to vote; someone else asked, "Why not?" Someone thought to themselves, hey, why not kidnap Africans and make them work the fields? The refusal of generations to ask "Why?" led to one of the greatest tragedies in American history. Why do I go to Rainbow Babies and Children's Hospital and see young children in wheelchairs? Why will one young man have the same frozen expression on his face every day of his life? Why are there children bald from chemotherapy instead of out playing soccer? Why did Avonte Oquendo die?

Damn it, isn't anyone going to ask why?

Why do the babies starve
When there's enough food to feed the world
Why when there're so many of us
Are there people still alone
Why are the missiles called peace keepers
When they're aimed to kill
Why is a woman still not safe
When she's in her home
---Tracy Chapman, "Why"

I don't expect perfection. I'm not that naïve. But I do believe that the failure to ask ourselves "Why?" can lead to imperfections that could be avoided. "Because we've always done it this way" is not an answer! If there is a reason you've always done something a certain way, then it shouldn't be that hard to give it. If there isn't a reason, hey, that's great, do it however you want. Just don't insist that it's the only way to do it... yeah, you would be wrong on that one.

And the answer to "Why?" isn't always cut-and-dried. "Why does that magazine cost $11.99?" is simple enough- paper costs X dollars, ink costs Y, labor costs Z, the profit margin has to be such-and-so to maintain the ability to continue to produce the magazine... all that is simple. "Why do people criticize what they can't understand?"- a little more ethereal, a little more complex. "Why can tolerant people often be the most intolerant of them all?"- yeah, y'all need to get back to me with an answer on that one, 'cause I'd like to know.

There's a time when the operation of the machine becomes so odious—makes you so sick at heart—that you can't take part. You can't even passively take part. And you've got to put your bodies upon the gears and upon the wheels, upon the levers, upon all the apparatus, and you've got to make it stop. And you've got to indicate to the people who run it, to the people who own it that unless you're free, the machine will be prevented from working at all.
-Mario Savio

The answer to the question "Why?" will often demand a response on our part. "Why can't women vote?" "Well, because the powers-that-be have decided that they should continue to fulfill antiquated roles in the life of the family and the nation, and let the big boys play." Should the suffrage movement at that point have said "Oh, well, OK, I like being pregnant all the time, having inadequate medical care and dying when I'm 35 while in the throes of childbirth, so you take care of the important stuff so I don't have to think"? No! Oh hell no! The question was asked, the response was given, and the resulting actions based on that response have led to greater freedoms for more than half of the population.

You aren't always going to get a good response to the question "Why?" At that point you need to make a decision- is this issue not worth the effort to effect change, or is the action of the machine so odious that you have to make it stop whatever the cost? "Why do Democrats and Republicans often act like (orifices)?" There may be an answer to that question, but I'm not so naïve that I believe I can change it- indeed, that it will ever be changed. It isn't worth the time and energy to me to try to effect change. "Why does my son injure himself and try to hurt me?" That's a question that I ask myself; I know there is an answer, I haven't found it yet, but the answer to that question is of such value to me that I am willing to sell all I have to buy the field in which that answer lies.

The answers to everyday life lie somewhere in between.

Choose your battles. Let things go when you can. But do not stop asking "Why?"

"What's the frequency, Kenneth?" is your Benzedrine, uh-huh
---REM, "What's The Frequency, Kenneth?"

Darlin' you got to let me know
Should I stay or should I go?
---The Clash, "Should I Stay or Should I Go?"

Why don't we do it in the road? No one will be watching us...
---The Beatles, "Why Don't We Do It In The Road?"

Who are you? Who-who, who-who
---The Who, "Who Are You?"

#JusticeForIssy

I was going to write on this subject, but a Twitter friend did a much better job than I (The Connor Chronicles). Intending to limit my discussion on the subject to my response, I liked it so much I'm using my response for my own blog entry :)


My son is 14, my daughter almost 12; both are on the spectrum. My son in particular has grown increasingly violent over the past year and a half. He attacks me, mainly me, because I step in to prevent my wife and daughter from injury. He also self-injures, mostly by head-butting.

As his behavior has spiraled out of control recently I have had to take him to the ER numerous times. Same situation plays out every time. Because my son was taking psych meds for his behavior, medical floors won't admit him, "it's a psych issue". Because my son's meds were prescribed by a neurologist, not a psychiatrist, psychiatric floors won't take him, suggesting that it's a medical issue. He was admitted twice for some tests but only because I got a little intense and called a couple of doctors on the carpet for their condescension. At discharge both times we were urged to contact a slew of social services for help. I was given a sheaf of papers toward that end.

We have had Children's Services involved in our lives because our house occasionally gets a bit out of control. Pretty easy to do, actually, when you are getting beaten on a regular basis and have no time or energy for cleaning. "Children's Services does not exist to take your children away but connect you with the appropriate services you need." Umm, yeah. That's why after one home visit I haven't heard from them again. And likely won't, unless someone else complains who has seen our house one time without any attention paid to context.

My emotions have been at the brink of collapse many times. I end each day wondering how the hell I can keep going on. I get desperate. How does a person like me get help to handle the desperation? Is it from counselling? Children's Services? Respite? A group home for my child? How would someone tell counselling that their emotions are stretched tighter than a rat's ass over a barrel? They are required to report anything that smacks of the possibility of child endangerment to Children's Services. At that point, Children's Services will definitely exist to take your child away, and appropriate services be damned. The service agencies listed on the manifold sheets of paper, if they are not location-specific, require intake forms, and committee meetings, and home visits, all of which require weeks, and at any time these services can be revoked if someone decides that the funds would better be spent on midnight basketball for city council members and their families. Where are the people that exist to help a family navigate through the maze? And are their services available without the clerical equivalent of rolling the rock of Sisyphus up the mountain of paperwork, only to have the rock roll back down again when you didn't dot an I or cross a T right?

The point of my diarrhea of the keyboard rant is this: it isn't always as easy as people think to get help. I need help for my son right now, not a week from now, not a month from now, not when he turns 18, RIGHT NOW. But the only way to get it would be to sign away parental rights to the county. Yeah, not gonna happen. I have to watch what I say with my counsellor. A statement as benign as "I get angry when my son kicks me in the knees" could be misinterpreted a hundred ways. Certain therapies aren't covered by Medicaid, and without insurance coverage, they can be godawful expensive. I have not been able to work for several years because the needs of my children require my presence at home; my wife could not handle things by herself.

The answer is never to harm your child. But what is the answer apart from that? Is the answer in pithy 140-character hashtag Twitter wars? What is the best way to get #JusticeForIssy? Is it to lock Kelli Stapleton behind bars making license plates for the rest of her life, until the next incident actually occurs and the focus goes away from #JusticeForIssy to the next hashtag du jour?  Could the answer be preventing the next incident of someone harming their special needs child, by more readily-available services or intervention?

Tell me, what is the answer?

We're off to see the Wiz(nitzer)

Kathy;

As of this writing we have an appointment to see you tomorrow at 3:20PM. I am only writing this now because sometimes it helps me to write my thoughts out first instead of going on the fly. I just wanted you, and by extension Dr. Wiznitzer, to know where I am coming from headed into this appointment.

The meds are not working. You already know that Matt was admitted to Rainbow twice in the past month. Last night we went to the ER again here in Elyria because of Matt's constant violence and aggression. And by constant I mean all day, every day. I'll show you a video. I'll show you some pictures of damage he has done with his head. And the few pictures I took only show the tip of the iceberg. He attacks my wife. He attacks my daughter. He attacks me most of all because I intervene with the other two. He will kick his bedroom door and headbang until 1AM and wake up at 5AM and keep doing it.

And the response from the two admissions to the hospital have both been the same. Increase one of his meds by some small increment, and send him home. The process begins again, and when the constant damage and noise bores a hole into our psyches we take him back to the ER, where they see that he is a danger to himself and others, they have to restrain him in order to give him a sedative, but after 12 hours (yesterday it was 17) they send him home because no one will take him. Because Dr. Wiznitzer isn't a psychiatrist, they won't admit him to psych, they say "this is just part of his autism" and send us on our way. And because Matt is on antidepressants instead of some "regular" med, the medical floors say "this is a psych issue" and send us on our way. And the wheels go round and round again.

The current behaviors have been going on since last year. I know that Dr. Wiznitzer believes that Matthew is bipolar. I also understand that psych meds don't work right away. I take three myself, I get it. But we should be able to see some small improvement at this point, some tiny ray of light through the pinhole that says to us "yeah, you are on the right track"? Instead, the aggression is worse. And I don't mean steadily worse over the past year, I mean exponentially worse over the past two months. It's as if the bike trail we've been on has risen higher and higher and then BOOM! Mt. Everest is in the way. The behaviors have gone from two or three times a day to all day for hours.

I believe Matt is in pain somehow. Carmen Hansford, Matthew's pediatrician, believes the same. This is why I pressed hard for an MRI to be done. This is why, when a condescending ER doctor says "oh, your pediatrician must not REALLY think he's in pain, otherwise she would have prescribed something", I get indignant. This is why, when an ER doctor at Rainbow says "we are going to have to send him home", even after they have seen the behaviors he is capable of, I say, "umm, yeah, maybe we should revisit this decision". Do they want me to wait until he puts his hand through a window for us to come back? Because he's giving it the old college try.

I do not believe that we have done all we can do in this area, to definitively rule out the possibility of pain. Yes, CT-scans and the MRI do not show any brain damage. An ultrasound of his kidneys show no kidney stones. He had a chest X-ray a couple of months ago, that showed nothing. And the constant lab work has shown nothing abnormal. But what I don't know is whether a CT-scan can tell us if he is having seizures. Can it show whether someone suffers migraines (my theory and that of Dr. Hansford as well)? Could he have some sort of inner ear problem? Could he be having stomach aches? Intestinal issues? Heart problems? None of these issues have really been addressed, the train of thought has been stuck at the bipolar station.

(sorry, I was interrupted. Matthew has almost kicked a door down.)

Yes, there are social services available. Yes, there is respite out there, and tent-beds we can keep him confined in at night, and many other things; I was handed a sheaf of photocopies as we walked out the door the last time he was admitted. But these things have to run through channels. These things take time. And time is something my family doesn't have. What we do have is many thousands of dollars in house damages that we will never be able to pay, a mom who hasn't been able to hug her son in over a year, a daughter who is scared all the time, and a father who carries the weight of all these worlds upon weary shoulders that are ready to break.

OK, this letter has gotten longer than the textbooks you teach out of. The nub of the gist is that I would like to at least phase out the Lithium and the Latuda. Abilify has shown some results in the past, and Ativan has shown results in the hospital, albeit in a much larger dose at one time than we give him (2 or 3 MG vs the 0.5 MG tablets he is prescribed). I would also love to see some sort of pain relief prescribed, something stronger than over-the-counter, although I am aware that it would likely require other tests to be done in order for insurance to deem it necessary.

I appreciate your help for us so very much; you have treated Matthew well, even when he kicks you, and that's something a parent never forgets. You have gone to bat for us with the insurance companies and gotten results. But I'm at bat now, and I'm swinging for the fences, because a base on balls isn't winning this game. My family has too much at stake.

---Sean MacNair