Temporary breakthrough

To say that I have written very little lately is an obvious understatement. I'm not even talking about updating this blog, but writing in general. The addictive time suck of social media, along with a lack of confidence has really caused me to essentially stop writing. It's been months since I've written a poem.

Months.

Since Meatgrinder last July, perhaps?

It's been a few years since I've written with any energy and grief stopped that in its tracks. Now, I have zero confidence in putting any thought to paper, let alone want to present it to people at a reading. I think I have successfully erased myself from the Columbus poetry scene. That's how low I feel.

Something was festering in my head for a few weeks though. The germ of a thought that came from an observation. Could I put it down and feel like i am not mining my son's life, which is (again) what the poem is about?



There was a moment in time before a webinar today when I set pen to paper and hoped. It took less than five minutes for most of it to be put down. I refrained from putting the paper in the shredder. During the webinar I edited it a bit and in typing at home it got edited a bit more.

Not the best, far from it. Not the worst, far from it. But it's something, and it's been a long time since I put something down that I did not immediately hide or erase.

Watching your difficult decision play out

Two weeks ago, I posted this about putting my son on an anti-psychotic medication.

Wow, that's a sentence you never want to write as a parent.

There are differences in him, mainly that he sleeps, a lot. With me at least, he mumbles what few words he does use. He used to speak to me a with more clarity. At school, this is not much of an issue. He has had at least one incident of self harm at his mother's, but it has been easier for her to help get him dressed in the morning.

I think he's in a safer place, maybe because he's so doped up he does not have the energy to act out.

I do not know. I do not miss the screaming, but the noticeable loss of energy is heartbreaking.

The hard parental choices

The problems began in October. My son did not want to get dressed at his Mother's house to get ready for school. This escalated into a much bigger problem for her, and for him.

Being a non-verbal teenager has to be one frustrating way to go through life, it's really hard to watch and live with. His behavior changed due to, what? Hormones, another illness, something happening to him we do not know about because he cannot speak. In any case, he was not safe due to his self harming behaviors.

We did, eventually, get him to a doctor and she heard us and saw him at his best and worst. Blood was drawn (it took four people to hold him down and one to do the draw), and we found out his strep levels were elevated. From here we learned of a condition called PANDAS in which people display very aggressive and obsessive/compulsive behaviors when they have strep. He was given antibiotics in liquid form, and his behaviors did not really diminish much.

A return to the doctor resulted in us receiving a prescription for a rather powerful drug, which we give him in pill form. It's a fast dissolving tablet that he is allowing us to give to him with no real difficulty. He initially was supposed to get an X dose, but his mother and I suggested a lower dose to start, because we've never seen the effects of the drug. She agreed.

The drug tired him out, we think he slept more, some of the behaviors diminished but he's still not allowing his mother to dress him in the morning. Last week we went to the dose the doctor suggested and it's knocked him on his ass. It's really odd to see him so lethargic. I'm used to the noise out of him, and it's vanished. He's also not screaming, or doing the dangerous behaviors.

I have to accept this trade off, for now. It's difficult and sad to witness. I understand the drug takes time to take full effect. Oddly enough the drug's main side effect is weight gain, which is in the irony of life is desirable.

He's in there, and for whatever reasons he is not happy. I do not know what his being on this drug will help with his feelings, his anxieties. It's making him safe from his own hands though, and that going away has been worth the risk. I did not ask to have to make this choice, but I have to help protect him.

Snapshot of floor time

The Scene: A child's bedroom, after dinner.

The child and his father are seated on the floor. Father is opening a container of Legos. Child is ignoring his father as the old man is putting together pieces, spinning wheels, and looking for the right piece for a tire rim. Child sits on his father's lap, a rather heavy experience for the old man. Child takes all the Lego pieces, puts them back in the container, moves the container away from his father, then gets up, turns out the light and leaves his father sitting on the bedroom floor.

Fin.

The day of the day

It's been an active and at times exhausting summer. There's been travel to Buffalo and in my wife's case, Denver. Future travel to plan, along with another party.

We've seen a few concerts; Sloan and Radiohead, with a few to come - David Byrne, Nicole Atkins, John Prine, The Posies.

Been watching Taggart.

We put the teenager in underwear a couple of months ago and there have been few accidents although poop remains a mystery.

Still trying to write. Took part in a poetry slam and had a short reading that may or may not have stirred up some creativity. There's also at least one song I need to write by late September.

I strongly urge a visit to the Temple of Tolerance in Wapakoneta, Ohio if you ever have the chance.

Not the Mets, but something good

Finally had the time to watch this zeitgeist video segment last night. My son was on the couch, lying down and working on falling asleep. I was on the other end of the couch and put the video up on the laptop. He heard the start of it and opened his eyes a little bit. I noticed him looking and asked if he would like to watch it with me. He immediately bounced up and sat next to me. He intently watched the whole thing. It was quite the experience watching this video with him, instead of him just being in the room in his own world. We were doing something together, which has been rather rare.



It continues to be a mystery what he knows and pays attention to. Once thing is clear to me, he is Team Paul. He used to be obsessed with a Silly Love Songs video of his and pays more attention to the McCartney songs on a Beatles DVD he likes to watch. Never really been a fan of James Corden, but this is a very sweet segment.

Anything but the Mets

Anthony Bourdain's death was a blow on the bruise of Scott Hutchinson's. Both less than a month apart. Both had the signs, but many (myself included) thought they had gotten through the really bad stuff. I keep forgetting that depression does not just go away. It does not go away like putting Visine on red eyes. It can return at any time, they way a powerful wave at the beach can knock you into the undertow. The way you can be doing well one minute but a thought, a couple of bad thoughts can enter your head and flood it to the point where the body is incapacitated. It all sucks, so much, and plodding on while all this nonsense is happening around us becomes increasingly difficult.

Had two beers with friends last night and woke up feeling absolutely lousy today. Been trying to cut back on the alcohol because it's really not helping me tolerate the daily chaos the administration creates every day. Still paralyzed by all the grief though. Unable to focus on reading, what gets written down is garbage and confidence remains low.

A couple of weeks ago we said the heck with it and put my son in underwear. If he pees or shits in it we'd deal. So far he has not had one accident. His underwear has been dry. Been peeing in the toilet this whole time. He will with more frequency go into the bathroom unprompted. As for the poop though, it's a mystery sometimes. There have been instances he has used his hands to put the poop in the toilet. Sometimes he does not use this extra step, sometimes he does. It is a profound improvement.

The last week of the year

Hope you all had a fine holiday. Despite my car accident (no one was hurt) it was a very good one. My lovely wife spoiled the heck out of me. If you ever come to the Westgate Cavern you will find out why. The teenager is doing well, as long as he has his iPad to play Badfinger and the Rolling Stones' "Child of the Moon"

I, too, listened to some music this year. Here's what kept me going. Really, really liked the first two - so I'm calling it a tie for the year's best.

Algiers - The Underside of Power
Nicole Atkins - Goodnight Rhonda Lee
Alvvays - Antisocalites
Neil Finn - Out of Silence
Robyn Hitchcock - Robyn Hitchcock
Jason Isbell and the 400 Unit - The Nashville Sound
Sharon Jones & the Dap Kings - Soul of a Woman
Little Steven - Soulfire
Lorde - Melodrama
Willie Phoenix and the Soul Underground - Garage Blues Band
St. Vincent - MASSEDUCTION
Harry Styles - Harry Styles
Tinariwen - Elwan
Waxahatchee - Out in the Storm

Next up, the movies watched list, and car buying.

Tonight in parenting

I am very self conscious about my guitar playing. I think I suck and there is very little that would convince me otherwise. When my son was younger, I'd break out my acoustic and play it. He would come up to me and put his hand on the strings and mute them with a very earnest 'stop playing, Dad' look on his face.

My neighbors have noticed me playing back there. One of them told me his dad was quite the musician back in the day. Very versatile, played a lot of different instruments. I said I hoped it was not too loud. He said he could not really hear me play, but could see me. Is that a sign for me to crank it up?

Recently I had my acoustic fixed. It's been cleaned, restrung and had bridge and nut work done so it is a lot easier to play. It's like I have a brand new guitar, it never sounded this good before.

Tonight I was playing the electric in the back room when my Son wandered into the kitchen and looked toward me. I invited him back to sit, and he did. I played a bit on the guitar and he remained seated, whatever I was playing did not seem to be harming him or he would have left the room.

I put on some records as he's still listening to what I put on his iPad. Since he's been listening to I Want You Bad by NRBQ I put that on, and he sat and listened. Then I put the Left Banke on as he's still really enjoying Pretty Ballerina and seems to like She Will Call You Up Tonight.

Put a new one on for him. I know he likes the acoustic stuff so I put Mumford & Sons 'Sigh No More' on for him and he really reacted positively to it. He was listening intently, rocking front to back in the chair. Real connection. So I put it on his iPad while he was still in the back room. As he picked up his iPad to go upstairs I told him I put the Mumford & Sons on there for him.

I returned to the back room and about ten minutes later my wife came back to say she could hear Winter Winds coming from his room.



This kid amazes me.

The streets were full of slow moving cars

My son started school today and is technically in ninth grade. It's hard enough to let that try and sink in before realizing he will be fifteen in two weeks. He's growing taller, his feet are almost as big as mine and we're going out for new shoes this weekend.

The rest is still unknown.

Received a direct message a couple of days ago from a person who had never heard of Tom Lehrer before they came across my blog. The person was having a rough time of it recently and the discovery of his music really improved their mood. I was thanked profusely.

Glad that I could make a difference in a small, positive way. Something I thought about after a rough day in which I sat in traffic four about three and a half out of four hours straight then walked into a boisterous and loud restaurant when all I wanted was a tiny bit of peace and quiet. I plodded through, and my lovely wife did her best to improve my own stressed out ass.

Now if we all could try and make that much of a difference to better shit.

Was I surprised, yeah, was I surprised, no not at all

After my son's six year old iPad finally broke I replaced it. The music that was on the old one did not transfer over for whatever reasons so I ended up doing the selection all over again.

I know some of what he listens to, but most of it was a guess and, I admit, projection on my end. So, yes, I loaded his iTunes with what I would have liked to listen to in 1978.

Who can say what a non-verbal, fourteen year old kid with autism will play? He likes acoustic numbers, or acoustic guitars with jangly electric. Nothing really loud, heavy or punk. He likes watching the early Beatles material on DVD. Yes, this type is very familiar to me.

He's been playing Walking in the Rain by The Ronettes on repeat. I caught him listening to it a few weeks back and he had a very sad look on his face. All I said was, "Yes, that's a beautiful song." This morning's playlist was the opening bars of Badfinger's Come and Get It, the opening riff of Tom Petty's American Girl and Maryanne With the Shaky Hands by The Who.

The huge surprise is his love of Pretty Ballerina, the other hit by the Left Banke. He will play this one over and over. I put a fan made video on for him and he watched it. I even found a copy of the album AND the 45 and played it for him in the backroom, where he sat and patiently listened as he rocked himself back to front while looking at the album cover.

I do not know what's happening in his head, but I am honored that he likes some of the music I do. We are thrilled that he is listening to music that is more grown up. He also does not come up to me when I am playing guitar anymore, the times he stopped me from playing by putting his hand on the strings with a look that said, "Stop Dad." Maybe he likes my rendition of Eight Days A Week on the Rickenbacker?

In West Columbus, and other sad places

The original Lunatic Asylum of Ohio was constructed in Columbus in 1835 on Columbus’ near east side. It burned down in 1868 and the rebuild on the west side of the city was completed in 1877. It was a tremendous building, said to be the largest structure under one roof until the Pentagon was built. If you walked around it, the distance was over a mile.

In the late 1980’s the building was abandoned and finally demolished in the 1990’s. Some of the architectural details, such as railings and windows, were salvaged and installed in the Hilltop Library - where I worked for a few years.

It was a hospital where the criminally insane were sent, where the indigent ended up, and where some poor families dropped off their children and relatives.

There are a couple of cemeteries on the site, They are hidden on the west side of Columbus. The one I finally went to is fairly easy to find. It is north of the BMV, just east of a center where violent juveniles are housed and next to the Columbus Police Department’s Heliport.



It’s a very peaceful, green space but looking at the stones is a very sad experience.



Who were these people? How many of them died alone? How many of them died not knowing they had family out there, or no family left?



How many were truly mentally ill and not given the help they deserved. How many were simply odd or misunderstood?

How many were autistic?



Here is a stone that simply labels a mass grave of human beings, Specimens. This is not the only one.



Here are row after row of tiny stones that reduced people’s names to numbers.



There were so many of these types of institutions all over the country, including one a couple of miles from where I grew up. Most of them had cemeteries just like this one. The numbers of people who were not treated like human beings, not given any assistance or dignity had to be staggering. Yet here we are today, facing an uncountable number of people with autism and other disabilities and we are cutting services instead of creating them. As a society we are not prepared for this storm. I’m not sure if this culture wants to take care of the most vulnerable.



Hope you all had a woke Autism Awareness Month. May is ALS, Arthritis, Cystic Fibrosis, Huntington’s Disease, Lupus, Mental Health, Stroke, Vision and more awareness month. That’s a lot to be aware of. Will no one will be aware of autism for another year?

Angry so I wrote a poem

Revisionism, erasure, implied book burnings, not a fan. My Son hates ceiling fans, he has to be aware if they are on at all times. We have two in the house. There is one in our bedroom that he looks at every morning just to make sure it is not moving. The other is in the back room, where I'm typing this on a warm spring day in Columbus. When he was in the kitchen earlier he stared at the back room to make sure the ceiling fan was not moving closer to him. It's not.

There used to be one in his bedroom, but that was taken out shortly after he was born and replaced with a dimmer until that he broke as soon as he was able to move the switch.

None of this has much to do with the poem I wrote today, but it's still Autism Awareness and he's still singing at 6AM after not getting to sleep past midnight. Happy Easter.


Burn me out of your brain and see what replaces me

Erase me, revise me out of history
Ignore me, drop me, block me
Invite me nowhere, trip me in the aisle
You want to roast me
Tell me more about roasting
Avoid me, befoul me
You want to roast me
Put me in your oven
I step on pressure cookers daily
You want to roast me
You want to roast all the dudes my age
When we become shoveled ashes for you to dance upon
who will you find to roast next?
Tell me more
I will show you ovens demand fuel
Who will you roast when you reach my age
Fires are thirsty they need asses after
my old ass gets roasted
Prepare for your search, your hunt for purity
I have the means for you to forget me
It’s cheaper than you think

Trying to figure how Sean Spicer envisions a Holocaust Center

It's still Autism Awareness Month, or Autism Awareness Day, ten days later.

We hear most about the Autism Moms and how fierce their advocacy is, which is great and to be commended.

We occasionally hear the same about Autism Dads. Once in awhile.

We never, ever hear about the Autism Step-parent.

The person who knowingly gets into a situation of absolute crazy.

The person who raises a child that is not his/her own as their own, even with the uncertainty, challenges and evil looks from the child.

The person who cleans up teenage shit, stays up into the wee hours and more.

The person who also tolerates the energetic singing at all hours day and night.

I have one of these amazing people in my life and I cannot thank her enough.

I also know two other guys in this situation. Tim and Terry, cheers!

Reaccomodating social media

I’m not even sure if I’m aging out properly anymore. I’m not part of anyone’s demographic, unless something financial is needed from me. Unless there is a form of media I’m supposed to commit a ridiculous amount of time to, and remember, I do not have much time left. And for most of what I see, in preview clicks, it was better the first time around. And I saw that already, before you did.

Well before you did.

Is autism awareness day over? Is it still autism awareness month? How do I know what day it is without seeing the virtue signals?

When I got home today I noticed a dead squirrel on the front lawn. Having a new lawn service start tomorrow so I had to take care of it because I did not want to spring it on the new guy. I’m really, really squeamish about dead mammals and handling them but I got shovel and a beer box and managed to get the carcass in the box without puking. While carrying it to the garbage I nearly had a panic attack. Took awhile for breathing to return to normal.

As I write this, there is a large amount of hatred going the way of an airline who dragged a passenger off of a flight for not volunteering to give up his seat for one of their employees. Seems the airline overbooked and the employees had to work in the destination city the next day. I’’m trying to figure out what the CEO of the airline meant when he said, “reaccomodate the passengers.” Is dragging them out of the plane, not under their own power a form of reaccomodation? It’s perfectly peachy company policy to do this to a paying customer because the airline overbooked its flight, again?

Business, government, the dude troll on twitter, just do things now days because they can. With no recourse. No one to answer to but their own sorry selves, and we keep buying the tickets and reelecting them. I’m fed up with the lot of it all right now.

Akai Hana did not pop out at me

Been ill most of the week, a lingering malaise of various internal organs. Each day I last about a half hour further before a quick fade out that leads into not being able to fall asleep.

At least the taxes are done. After all the financial changes of the past year we had them done professionally and what a relief. Total piece of mind, even if we owed.

It's still autism awareness month, right? Am I still aware? I'll find out more tomorrow afternoon.

It seems Brew Dog have sold a chunk of themselves to a capital firm. Looks like that's how they're going to fund the hotel on the Canal Winchester property. Things are getting weird now that the punk founders are multi-millionaires.

All of this could be a moot point if this administration starts blowing up more than runways.

April is national poetry month too. The less said about my writing, the better.

Instead of continuing, it might be time to get into that strawberry parfait.

A day I'd rather talk about the Instant Pot

Blue's a nice color. It's a color in the Mets uniform and they start the season tomorrow. My Son is halfway between 14 and 15 and has never been to a baseball game. He shows no interest in it when it's on TV, but he loves the episode of Dora the Explorer when she plays baseball. Maybe Dora can catch for the Mets, she may stay healthier than d'Arnauld? He watches that episode of Dora on his iPad all the time. I know because he turns the volume up full blast and gets angry when I turn it down. He does not understand the concept if you do not turn it down I will take it from you because I did that and he did not care. Putting duct tape over the speaker was a temporary solution, but his therapist at school was not able to hear the apps she's using so it had to come off.

When I was his age the Mets manager was a guy named Joe Torre and they lost 96 games. Loss was a big part of my childhood. I do not know how my Son feels about his childhood. His main reply when I ask him a question is the word, "Sad."

This inspires little confidence in my parenting.

The Mets winningest pitcher in 1978 was Nino Espinosa. He won 11 and lost 15. He was traded to the Phillies the next season for Richie Hebner (who did squat for the Mets) and Jose Moreno (who did even less). Espinosa had his best year with the Phillies when he won 14 games. He lost effectiveness, was not on the post season roster when the Phillies won the World Series in 1980 and was out of the league a year later. He died of a heart attack on Christmas Eve, 1987. He was 34 years old.

I do get asked about how my Son is doing frequently. He is probably healthy, not capable of letting us know if he is sick, has pain in his mouth or gut. He can now let himself out of the car and knows how to open the hatch of my Volkswagen. Those two tasks were easy to teach. There's an app he uses to let people know his name and other life details that he uses. He usually urinates in the toilet but still defecates in his diaper over 90 percent of the time. When he does poop in the toilet the size of the movement is about the size of a burrito. The colon and sphincter are amazing things.

April is autism awareness month, I've known this for more than a decade. Seen the hashtags, social media posts, have lost months of sleep because of a child who stays up late, then wakes up singing three hours later, and refuses to go back to sleep for another couple of hours.

Sleep deprivation due to having an autistic child is a real thing. Does that get a hashtag? An awareness color or ribbon? A special brand of coffee?

Tomorrow, for the Mets, is opening day. A time of hope. A time to perhaps take care of unfinished business and win the World Series for the first time in 31 years.

Tomorrow is another day in the life of my Son. He will get out of bed around 6AM to eat his breakfast and I will take him to his Mother's about half an hour later so she can bring him to school. We do not know how he will sleep tonight. I will pick him up from school a bit after three and bring him home with me. When he gets home he will take off his coat and shoes then will go upstairs to use the toilet. I will not have to prompt him to do these things. He knows. Then he will take a yogurt (Yoplait, French Vanilla, no other flavor he can read the label) out of the fridge and eat. I will find some peas, fruit, a Hormel Compleats dinner and blend them all (not together) to prep for his dinner and school lunch. He has never eaten a cookie, hamburger, hot dog or Coca Cola. Textures in food repulse him.

Maybe he will defecate in the toilet, but more often he will not. Maybe he will fall asleep at a decent hour and make it last through the night. Maybe he'll have a future in which he can be slightly independent. Maybe there will be funding for services for adults with autism as there will be so many of them in the decades to come. Maybe we can get some foresight do deal with a major social problem that is unstoppable.

Maybe the Mets will win tomorrow.

Like Father, Like Son, Think About It

My Son will not eat solid food, but he will bite his nails. I guess this is a genetic trait. He may like high school more than I did, but he is not saying.

News may be breaking about tax returns and who controls wikileaks, but the wrong people are doing the shouting and getting heard. Who gave roger stone and his bowler valuable air time?

What news has diminished to. Sadly, the entertainment draws numbers, which draws corporate ads, which fuels the pump.

Liar. Scream. Repeat.

After many months I did get my official Equity Punk Card from Brewdog, making me an official something. And I renewed my AAA membership so maybe there is hope in me that we have another year left. Possibly until the end of April, 2018, when my membership expires. After then, all bets off the table?

We're having a wild year for all the wrong reasons, although there is a trip to Vegas actually booked and paid up.

What are we going to be flying into?

The clouds, the breeze

How does a parent tell their 14 year old non-verbal child that the world has changed? I’ve had to tell him about the deaths of Grandparents and other relatives and it is so hard to know what has registered. As a parent of a severely autistic child, I’ve been advised to assume he is aware of the world around him even if he behaves as if he’s separate from it. Gauging his reaction is always difficult and in the wake of a death or other Earth shattering event it’s frustrating for me.

“I have to tell you something important happened last night. You know how Daddy yells when something bad happens to Everton? Well it’s like that, but a bit bigger….”

Oh Hell I do not know what I’m doing but I’m even more fearful about his future now, and about the health care of so many special needs children and adults who are probably going to lose their benefits when the new administration erases the Affordable Care Act.

The new sheriff in town does not inspire confidence when he mocks a man with cerebral palsy onstage and his followers kick a child’s wheelchair.

It’s not a good time to live in this country unless you’re a straight white male with some means. I have no idea what the next four years will bring, even the stock market shocked me with a rally today. Yet I can’t seem to want to give up hope. Maybe when the guy leaves it will be better than it was? I can’t help but be cynical and frightened for my friends and coworkers who do not look like me though.

He had a passport

We were in Paris, hanging out by the Eiffel Tower when my son disappeared. Emma and I went after him, for some reason my stepfather came with us but he stayed put.

I was running, not as fast as I used to and noticed that. Age caught up to me. Lost track of my son. Now there was a missing non-verbal teenager in a country where there is already a language barrier.

That moment where you think you spotted him from behind but when you got there saw it was a French kid wearing a similar shirt happened.

Fences and barriers were jumped and rolled over, stairs were climbed. There was a small place to eat at the top of one flight and my son was not there. When I turned around I saw my Wife and we each had the same look of exhaustion and horror on our faces.