Still unmotivated. Pointing the finger at no one but myself. It's humid out there, but that's only an excuse. Did a bit of Arts Fest administrative work. Some initial contact will be make in the next few weeks. The process has to get going, and soon.
My mother got my son a car track for his birthday. It's all good, eventually it became that way. Once I figured out how to snap the track together it was a struggle. Figuring out how to put the batteries in the cars was a pain in the ass that led to some behavior I was not proud of. The boy has been paying attention to it though, which is great.
Tomorrow he has an appointment with a new occupational therapist.
Given little thought to IWPS. Did book my room, will make plane reservations this weekend. Wondering how the heck I'm going to get from the airport, which it 40 miles out of town, into town. I hear scuttlebutt of shuttles. Hope the organizers have them in place.
Suppose I should get to work figuring out what I'm going to be reading. At least four poems, one to four minutes in length. Do I read one poem I did in 2009 in Berkeley? How deep are my pockets?
A couple of months back I received a letter from my son's former occupational therapist. It more or less stated that he was still on the list for treatment, but his referral would expire in late September unless we scheduled appointments.
This morning I called to schedule an appointment. I was told he'd be put back on a waiting list, that I'd receive a call when his next session would be and that his referral was now up to date.
Did not expect to hear back from them for a few weeks. Was quite surprised to get a call back less than a half hour later with a date, next Tuesday. His new therapist, I specifically requested he not receive his last one, can take him every other week.
So what we're going to do is have O.T. one week, and Behavioral Therapy the next week. I'm really at a loss right now. He's definitely made progress, but is still quite underweight. Summer camp did not help as there did not seem to be anyone on staff capable of feeding him. His mother received a substantial amount of food that he did not eat, or that the staff did not make an effort in feeding him so they kept the food all summer without telling us. This part of the story is not over.
His behavior therapist has stated on more than one occasion that we're not doing enough, that there is no local situation that can provide him with intensive day or in-patient therapy. In the near future, that may change as she told me there is a new doctor on the hospital staff who may be capable of starting an in-patient feeding clinic. She's also setting my son up for an examination with this doctor.
He's intently watching Dora. I wish he put the same focus into pooping in the toilet.
It takes hours for me to decompress from my son's behavioral therapy sessions. He seems to recover quickly from screaming, crying and melting down at various points during the hour.
His torture is a small amount of mashed banana mixed into in smooth yogurt. He will struggle to touch the spoonful with his teeth, refuse to wrap his lips around it. When it enters his mouth he will put his fingers in there to remove the food, prevent himself from swallowing the poison. Then he will shake the offensive goo off his hand, spraying it around the room, or wipe the combination of spittle, yogurt and snot on his shirt in a panic. His voice a primal scream of pain and extreme discomfort.
The same horrors happen when a quarter of a miniature vanilla wafer is crumbled into a powder, then mixed in with some caramel cream pudding. His Mother got to witness this first hand today, distressing is an under statement.
The bases are foods that he likes. The mix ins, the solids, go into his system like daggers. We do not know where this profound aversion to food comes from, or started.
We try not to get angry, keep neutral when the negative behaviors occur, when food is thrown, when he pushes food or plates and makes them fly. We do cheer when a bite is taken, cheer louder at a second. Even the iPad is not very effective as a bribe, a positive reinforcement.
No one seems to know what it will take. He's going to be ten next month and does not weigh fifty pounds. We're not even sure if inpatient therapy would help. It's not available in Columbus, and we're not sure if it's anywhere near us. Cleveland, perhaps? Then there's the insurance issue. Hell, even if unlimited funds were available, I'm not sure this would be solved. He's getting good help, or I'd like to think that, and we're received some good advice from all over. The hardest work is up to him though.
Even with the ceiling fan on, it is too damn hot to sit in the back room today. I used to have a lot of tolerance for heat. Age, and living for too long where I did not have air conditioning has weakened my resolve so I turn into a lazy, cranky git when the temperature goes over ninety degrees.
It does not help that my son has forgotten to sleep past 4AM. We even set up a mattress for him in our room since it has a/c. I do not want him sleeping in a hot bedroom. His repayment to us is to wake up singing before the birds.
This morning the power went out. It got really quiet, except for my son. I noticed the ceiling fan was off, looked at the clock and the screen was dark. Grabbed my iPod. It was 3:21AM. A couple of minutes later, the power came back on.
Last week's appointment with the behavioral psychologist went well. His OT is off the team, we've lost confidence in her. The behaviorist can't teach him how to chew, we know this, but she has some techniques to get him to tolerate a variety of food. We'll see.
The immature mourning doves are still hanging out by the recycling bin. Yesterday morning they greeted me.
It's been neat having them around. I'd name them, but the moment that happens they'll get eaten by a cat or fly off to their grown up mourning dove lives or whatever they do when mom stops puking in their mouths. I have not seen them today. See? Just by thinking about it, they disappear.
Busy week ahead, and The Arts Festival is next weekend. The weather is supposed to be good, the temperatures lower, at least.
My wife and I celebrate our third wedding anniversary on Wednesday, we'll be at WB. We'll have a nice dinner out on Thursday.
My son's last day of third grade is on Thursday, day camp starts on June 11th. Where the hell did May go?
Saturday, after my son's swimming lesson, we came out of the locker room. We walked by the head of the swimming program for the building, and she was visibly upset. She told us she just found out that the mother of one of the lifeguards died very suddenly a few minutes before. The lifeguard was working and got the phone call from her father. The woman was watering flowers in her garden and dropped dead. Just like that, not much older than me. As we left the building after I expressed my condolences, I heard people sobbing.
This morning I saw the name of a coworker in the obituary column. I knew she was ill, but few knew it was cancer. She was always friendly and professional in my dealings with her. She led me to get my Christmas through the OSU farm every year. Going to miss her. Only fifty seven. The workplace was numb today. I suspect it will be for a brief time.
My expression of skepticism regarding my son's appointment with the nutritionist resulted in a strongly worded six page letter from his OT. She pointed a bit of blame toward his caregivers in her reasons to send this letter. That we're not doing the work. Said that he has shown little progress and has she's essentially given up on him unless me meet certain conditions. The conditions are not unreasonable, but she made other statements, including her belief that my son will never be able to chew food and get nutrition from it. How can you trust a therapist with that much pessimism? How can you think she's willing to invest in any more improvement for him? We have an appointment with his behaviorist on Wednesday. Could be tense.
So questioning the methods of a medical professional results in a six page diatribe. Yes, there is a problem.
In happier news there are a couple of good records out right now including this one from Beach House.
This is lovely dream pop. really fine record with nary a bad cut on it.
I'm also pleased with the new one from Admiral Fallow.
Have a feeling this band is going to increase their audience a lot this year.
The actual writing has been on the back burner for the past couple of weeks. Nothing more than fragments. I have been doing some writing work, preparing for the audition for Arts Fest next week. Also been accomplishing things writers do, waiting for the right time to let that out. It's good stuff.
Slowly starting to feel better, whatever I had really took a toll. It's giving me a cough now, which is fine during the day but not at three in the morning.
My son is feeling better, which is quite the relief. We all went grocery shopping on Sunday, a full shop and we did not put him in the cart. He walked with me the whole time, up and down the aisles, very well behaved.
He had an excellent therapy session last week. His therapist was working with him on facial features and identification. She drew the figure on the lower left then helped him draw the head and eyes on the lower right. He, all by himself, drew in the nose, mouth and he carefully put the ears on.
Last night he pooped in the toilet so he got some iPod privileges. I have an app of facial emotion indicators that he likes. Why he laughs hysterically at the sad emotion is very amusing and disturbing. I try to get him to press on the face that corresponds with how he's feeling, he presses on sneezy, or gassy. Then I ask him to show me happy, and he presses on that one.
He also bounced heartily on the yoga ball, better that than my knees. Last night with him tonight after an exhausting two straight weekends with him. This last weekend though, more joy than challenges.
WoW starts tomorrow night. Last chance slam at Barley's. Starts at eight. No excuses, unless you're too chicken shit to confront truth.
I was able to speak to one of my son’s therapists at school yesterday when I picked him up for his vision therapy. They’re using sentence strips with him, to encourage language use, and reading. He seems to have a lot of fun with the strips and his use of phrases starting with the words, “I want…” is increasing.
She told me he was on the computer, and he left his seat to go to his box where all the sentence strips are kept. He rummaged around the box, looking for the right strip. Then went to the work table with the strip in hand and waited for one of the aides to come by.
The strip said, “I want a walk,” which means he wants to take a little break, a stroll in the school hallway. So he got his walk.
To get him off the computer with no fuss is a major accomplishment in itself. For him to leave it voluntarily is huge.
Another important thing to come out of this is that we know he can read.
His vision therapy is going very well also. His therapist said he works well on a slant board and was doing a fantastic job at connecting dots, with the prism lenses on. With the prism lenses off, he did not do so well. She asked me if I would ask his teacher if he can use the lenses in class for a few minutes each day. I asked his teacher last night and she agreed. He’s not going to be wearing them during recess or anything, but when he’s working at a table, on writing skills.
These are positive steps. He is much calmer these days. Whether or not it's his age, being back at school or the sensory learning that started back in June is not really relevant. He's adapting, slowly, but noticably. His sleeping has also improved, even though he was up at 5AM on Tuesday morning. Toilet training though, is another issue entirely.
Even the best therapies are mostly useless if the patient will not wake up. The rest of the month is holding up a light box that pulses magenta light while the patient allegedly looks at it and reacts.
All I can say about his therapy is that he seems to be eager to go. Once we're there he climbs up on the table, lays down and is ready for the session. No fussing at all.
We went to the grocery after this morning's session. I only had a few things to get so I did not put him in the cart. He held my hand and we walked around the whole store with no problems at all.
He's been so good I got out his wagon, which he turned over and walked on immediately.
I had donuts, it's been a good morning.
Really enjoyed reading Hirsch's biography. It's authorized but we are still allowed to see some of the cracks in the legend. I thought it stopped a bit short when we read about Mays' hospitalizations during a couple of seasons. I thought his being 'tired' was a brush off. Mays' relationship with his first manager Leo Durocher is described fully and I had no idea how warm and respectful it was.
Mays is probably the best living baseball player at this time. He played in the Negro League as it faded after the game was slowly segregated. Mays was not the fiery player Jackie Robinson was, nor did he speak out for equal rights the way Robinson did. Mays brought his joy to one person, one stadium full of people at a time, and if you did not get that it was your loss.
I only got to see Mays play at the end of his career with the Mets. A very sad year he never should have started. His appearances though made me appreciate and love him for what he was, and why I own a New York Giants 1954 replica baseball hat. The only major league cap I wear.
It's hard to assess how the Sensory Learning Program is going. It's not harming him, in any way, at all. How bad can being on a bed that rotates while your listening to quirky music in headphones be? I listened to some of the music, it sounds like he's being Rick Rolled.
He's lying still during the half hour sessions, which is a minor miracle in itself. It's still taking him awhile to get to sleep, but he has been sleeping though the night as far as I can tell.
One thing he is doing is alternating his feet when he goes up the stairs. This is something I've been working on with him, and he's finally got it. Going up, not down yet though.
We're more than a third of the way through these sessions.
This weekend was the Columbus Arts Festival. Saturday was quite damp and humid. A storm around 4PM caused the organizers to close the event for a short time. I read first, in a tent that was very sauna like.
There was a layer of sweat on me after my set. For the record I read:
Pantoum For a Child with Insomnia Swings Inside the White Fence The Revolution was Not in the Program Guide (Apologies to Gil Scott-Heron) Divorced, with Special Needs Started While Flying Over Cincinnati After IWPS This Was How We Spoke Lincoln Tower, the Grassy Knoll Nobody's Poet
We left the festival and came back just in time to see my friend Joanna read two poems from her third place feature then saw first place winner Gina Blaurock's set. Excellent work.
I ended up being drafted off the bench to perform in the sixth annual poetry slam. Had a lot of fun, as did Scott Woods, who did everything but crowd surf during The Gospel According to the Matrix.
Later, Scott drew the largest time penalty I have witnessed. He lost six points. Joanna won the slam. I came in fourth.
Today I took part in the Decathlon Slam. I put together a team of poets who were out to create poetry mayhem. Vernell's team beat the crap out of us, and the secretly formed Dyno-Twins. I suspected a loss, but we were going to go out with our dignity intact.
How are you going to beat a poet reading Shel Silverstein's "Boa Constrictor" as Whitney Houston during her 2010 tour of Europe? You cannot.
It was a great weekend of poetry, and it was my Scottish Wife's birthday!
I have taken the next couple of days off to get my son to therapy and look after him before he starts day camp next Monday. His therapy concludes on Sunday afternoon. A busy week is ahead, and the World Cup starts on Friday!
