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.

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.

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.

The bridge I torched

So many seem to do everything to cling to their childhood. I think my problem (or one of) is that I wanted to distance myself as far away from it as possible.

Even after having a child, and the experience of autism, it's been so hard to reach and relate to it all.

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.

I'll pick Click Bait for $1200 Alex

Last week I took the Jeopardy online test. Initially I did well, better than some of the other tests I've taken. Then I saw the replay of the questions and I got at least nine wrong (out of 50 questions) and stand a slim chance to move on in the process.

Today I got an email from Jeopardy. It's subject heading was, "Congratulations!"

Intrigued, but not convinced, I opened the email, which said, "CONGRATULATIONS! You completed the online test. If you pass we'll contact you to schedule an audition."

Bite me you teases!

Because of the Columbus Day holiday my son had no school so I have been watching him today. It's been rather chill. We took a walk downtown earlier. The meters were free thanks to the oppressor's holiday. My son got to meet one of the three deer along the Scioto Mile.



He seemed to enjoy the walk. He walks very fast, faster than me and it was a struggle for my out of shape self to keep up with him. He liked the loop, we did not see anything twice, and he did not complain when we got back to the car. Dad win.

Failure to thrive

Traveled last weekend and came back with a sickness that has been kicking my ass this week. All the humidity on Long Island combined with going into air conditioning and not enough (never enough) rest added up to something nasty taking hold on my system.

Did get some things sorted about with my Aunt's estate. I now have the rest of her pictures and went though my Father's pictures and did some scanning. A lot of memories went by, good and bad ones. Did end up driving on the LIE during afternoon rush hour to see my Sister in LIC. Nice neighborhood, with a cool view a few blocks from her apartment.



Driving was tiring. Put over 1,500 miles on the car, and it performed wonderfully. Still, it was a long trip in a shot amount of time. That, and my son's annual IEP meeting always adds up to additional sadness and inadequacy as a parent. The meeting went well enough, his Mother had concerns about the amount of a therapy he was to receive, which made sense to me. That my son is attending a new school and they're still getting to know him adds more to the uncertainty. He does seem to be doing well there. We were very concerned about how he would take the transition to a new school and pickup and exchange between his Mother and I, but that has not been a problem. Which is a very good thing.

Called an accountant today, we're meeting next week to talk about finances. This is a first.

Week two of my NFL hiatus is in full effect. Weird getting messages during the game and comments directed to me the next morning about what happened the night before. I do not know the specifics, I see the headlines, but do not know how the Bills are sucking.

Now, back to trying to rest or avoid writing.

Now if he'd get some sleep

My son has been sick with a cold all weekend and did not go to school today. When I picked him up from his mother's he looked tired, and was all red under his nose from where he has been rubbing it. He was not happy when I pulled into my driveway, would not go in the house. Eventually, since there was no reasoning with him, he was carried in. His schedule is out of whack, and I'm the uncool parent. He threw a decent tantrum.

His mother told me he was not eating but he did eat dinner but would not drink any milk. We did not force it. A couple of hours later he had some yogurt and he was in the kitchen when I heard him banging around. Then he came into the living room and looked at me as if he had something to say. Nothing new, this happens a lot. But I asked him what he wanted and he said, "Milk." Went into the kitchen and he already pulled out his cup from the drainer next to the sink. And he chugged it.

A dropped syllable reveals so much

My son is somewhere between 57-58 pounds now. I weigh him on the scales at the pool every couple of weeks. He is slowing gaining weight, definitely not losing. He eats fine for me, we introduced creamed corn into his diet and he has not put up any real fuss. Yes, that creamed corn is also blended, hard to wrap your head around but that's part of the challenge.

Tonight we were doing some drawing and I wrote out his first and last name and asked him to repeat it, which he did. I think that was the first time I heard him say his last name, which is all odd and unsettling to me. It defines a lot of the difficulty and what we have to face. And why didn't I do this years ago? I cannot imagine how difficult it is for him to process everything.

After that I wrote out Columbus, Ohio. I've heard him repeat Ohio before, which he pronounces as "Hi-O."

The school lottery form is being filled out and sent by his mother. She's the residential parent so it's her responsibility. We hope he gets into the place we toured, many of his classmates end up going there so we hope for that familiarity for him. So many changes ahead, including physical, which we are nowhere near prepared for.

Monday headache

If I insist my son eat, sleep, use the toilet and try to communicate with the world in a meaningful manner I have to be nothing less than a brute.

I saw too much criticism of the updated Cosmos last night that made me call into question why we do anything else. Yes, Neil DeGrasse Tyson is not Carl Sagan. Yes, Fox is not PBS. No matter how much people want it by worshiping their past or surrounding themselves with fetish items from their teenage years, childhood is not coming back. I guess that last segment of last night's program, in which DeGrasse Tyson spoke of meeting Sagan as a seventeen year did not get across. It's why we move forward, or at least try to.

And no, I'm not going back to watch the original at this time, because, this old post.

Everything is awesome

It was a holiday yesterday so my son was off school. I took the day off to look after him and decided that we would have a father/son outing. It's been grey and cold here, with more snow than usual so I chose a movie. The Lego Movie.

A lot of people had the same idea as mine, the theater was packed with kids, which was fine as I had one, too. It's always hard to decide what to expose your son to, what does he know? What will he get out of it?

He did well but was not really interested in the happenings on screen. He watched, then looked around the theater, babbled a bit. Who knows if he had a good time? When the movie was over and the credits started he was instantly out of his seat and wanted out of the theater. I thought that he would be interested in the credits as he always watches them intently at home. Not the case.

The film itself was a visual freak out of nostalgia. Certainly entertaining, though I'm not sure who the target audience is. Having read no reviews I had no idea what to expect, or who did the voices so there were pleasant surprises for me.

Later that evening TCM had a premiere of a little seen film of Jackie Gleason's. Gigot was made in 1962 and to my knowledge is not available on home video in any form. It's also directed by Gene Kelly. It's set in Paris and Gleason plays a mute who works as a janitor. He's picked on and ridiculed by people in the neighborhood regularly and with great cruelty. Then he meets a prostitute and her daughter and finds a friend in the kind daughter.

I wanted to root for this film, but some of the sentimentality and pathos was so over the top it's hard to take Gigot seriously. Reviews were mixed, and remain so. Was Gleason trying to be Chaplin in the Kid, or Tati? His ego was all over the opening credits as his name appeared several times in very large font. Still, it's quite the ambitious film and the effort is certainly there, even with execution that is deeply flawed.

The day before we do not travel far

My son is not happy when his mother is not there to pick him up off the bus. That means he's staying with me, and stepmom, and he does not like it one bit.

Maybe it's the food, the lack of entertainment options, but he does some good protesting for up to an hour until it's time for dinner and then he's fine.

Until it's time to sleep. Monday he decided to not go to bed until about 12:30AM. He then woke up incredibly listless at 7AM to get ready for school. It was trying. For everyone.

Today there was no school so I was prepared to stay up with him until he conked out, which he did at 10:30PM. I expected him to wake up at some point during the night, but he did not. Ended up waking him up at 7:30. He ate all his breakfast while I showered and has been quite chill today.

He's been watching videos with me, singing along to KT Tunstall. He's also taken notice of my wife's shoes and has been walking around the house with them. He's left them in the back room a couple of times already.

So it's been a good day, and I got a few chores in for the buildup to tomorrow's holiday.

Give me a head with hair

There's always something new when you have an autistic kid. A new word you did not think he knew comes out of his mouth. A task he has never performed that he does as if he knew how to do it all along. Then there are the quirks, the way he taps his spoon when he eats, the way his eye squints when he rubs your eyebrows.

A new thing just started recently. He's been pulling his hair out, and there's a word for it that I am not going to cut and paste here. There's a small bald spot, but much bigger than mine, on the crown of his head that is a cause for concern. Is it another OCD quirk, like how he has to touch the curtain rod when he walks downstairs? Or is the hair pulling something more serious? No one really knows what is causing this. I did a really messed up thing when I was around his age. Licked my bottom lip until it was dry and scabbed over so badly, impetigo set in. New baby in the house may have triggered it, who knows what was going though my crazy head back then? Makes me wonder what about this whole condition is genetic and what is not. It's another thing to add to a pile of other things that make life with him a challenge. Much of this could probably be helped if he were verbal.

Talked about it with his mother at swimming this morning and we thought getting his hair cut might help. It has been getting long, maybe that added to the trouble?

So I took him for a haircut at a place he's been to before. Oddly enough, this was the first time I had even taken him to get his hair cut. It's always been his mother who did this. Weird, I know. He does not like the sound the scissors make and is afraid of the electric clippers and the blow dryer. I told the stylist this before hand and she was really good with him. He behaved well too, until the scissors got close to his ear. No one was hurt. My son got a Dum-Dum lollipop and she got a good tip.

He's still tugging at his hair.

I am totally out of my depth here.

Holiday angst

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?

I love to watch him swim

He has had very little fear of the water since he was first in the pool, over two years now. Flotation devices were quickly discarded as his ability to tread water on his own was determined.

He's still hesitant to jump in on his own, but he does love being thrown in.

Swimming underwater is his new fun, he's even trying to sit on the bottom (of the shallow end) for a few moments. He's still not interested in being on his back in the water though.

It's a passion, confidence and strength he has developed on his own. He shouts with joy when he's in the water. I'm proud of him.

No such thing as a free App

Been trying to find apps for my son on the Ipad to use that do not involve him watching the same Dora the Explorer trailer over and over. A fellow poet posted a link on Facebook to an app called Scribblepress that seems to attract him.

Tonight we were working together with it and he was naming all the colors of the pens he was using as he scribbled on the screen. It's very easy to use. I have not made a book with him yet, but we're going to take some more pictures soon enough.



It's tough to find things we can do together. I got him a Hot Wheels set that he does go to once in awhile, and he uses it rather appropriately. That's one of the rare ones. I feel like my life with him leans more toward the miss out of he hit and miss. Winter's here and I'm feeling a bit lost. A picture I do not want to draw.

Nothing but a Prime Number

I've survived another year of travel around the sun. It's Father's Day too, which happens every few years. I read about kids getting up early and making their dads soggy cereal for breakfast. Not here.

I wonder what he remembers and I suspect it's a lot, more than I think. I try to be patient and sometimes I am not. A lot of parents are like this, right? We're all human, or supposed to be. So much is expected of parents, and rightly so. But when the curtain falls on the hallowed image of being a decent parent to a special needs child, it damages the scenery. What has scarred him and how much have I screwed him up already? He's not even nine, when he asks for what he wants you can barely hear him speak but when he's incessantly bouncing on the yoga ball the unintelligible speech is loud. It's hard to get through the days when that is all he wants to do, or when he's nearly impossible to reach. All you can do is love him as best as you can I guess, and hope for the best.

So many times I do not know what to do. I'm asked what they're going to do to him in the Feeding Clinic and I do not know. No one knows. It's how he reacts to what is presented to him that may determine the path of therapy. This is going to take a lot of work.

Often times I am terrified of what he will say about me if he does start speaking. No amount of typical back talk could prepare me for that. I do not regret what happened though, I was going without much of a net. Sometimes I still am.

Called my sister tonight, which is something I rarely do. Not just her, but everyone. Telephones and I are not friends. I tried though, and will try again soon.

Old and New Tricks

Not sure if it was the change in temperatures, the time change, an illness or something he's not saying but for the past several weeks my son's been in a slump. It happens to all of us. We noticed, his teacher noticed. It's hard not knowing what exactly is wrong, because he's not saying in a way we can get.

The past few days though he seems to be pulling out of it. He's been sleeping better for one thing.

We slept in yesterday morning and he came into my bed with a ball and threw it at me as he said, "Catch the ball Daddy."

It was such a lovely day yesterday we took him to a park. Surprisingly there were not many people there so he had the place to himself. He did not wander along the fence, but used the slide appropriately, he even climbed up it!

We figured something out while he was on the swings. For reasons known to him only he likes to drag his feet on the ground while swinging. If he does not hold on tight enough, he's likely to fall and get a face full of wood chips, so we try to avoid that. Underneath a couple of the swings is a hole in the ground that is deep enough so his feet would not touch the ground. When I tried putting him on that swing, he got right off.

It's amazing what he notices, or, what we think he notices.

Looking up just now, I saw him get up, go to the box of tissues and pull one out. He spilled a little oatmeal on the table and was attempting to clean it up.

Last night he stomped around the house in my wife's boots, which he had not shown interest in for some time.

Toileting though, is another issue although a couple of nights ago I did find him in the bathroom sitting on the toilet correctly. After awhile he got up, no poop, but did put a new diaper on (backwards but give him credit) with two feet in one leg of his pajamas. He tries, he really does.

Filling in Gaps

In the post Father's Day wake this article struck home on a few points. Most of the author's experiences are not like my own, but there are a few. I know my father has been ill and am expecting the call at any time that his time is up. We never really met. I sent him a brief note and a few photographs of my son a couple of years ago. He never replied. My stepfather raised me. He's a great man and I do not thank him enough.

I have a half sister I've never met either, but she is on Facebook. I sent her a message last year and she replied then immediately added me. We have a sporadic, but cordial contact. I'm sure we'll meet someday.

Father's Day in the Heat

My wife's friend Mary Jessica interviewed me, and other fathers in this article.

As I get older, my tolerance for hot weather decreases. I used to love the heat, until I came to Columbus. Here, the heat lingers all night. It does not cool off at night they way it did on Long Island, or Fredonia. The air here is stagnant, polluted, filled with cottonwood.

Time to wake up the boy and get him ready for the sprinkler and what not.