Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Sunday, July 27, 2014

Nine Inch Nails and Soundgarden at DTE July 26, 2014

Hey folks. Long night but I am back and I had a great time seeing NIN & Soundgarden at DTE in Clarkston, MI. I had to remember back and that I discovered NIN around 1993 or early 1994 and always vowed I'd see them live. But it took 20 years to do so!! Certainly, they did not dissapoint. I'm not a massive Soundgarden guy but I like three of their albums.

Soundgarden: Played all the hits. Some good stuff from BADMOTORFINGER and SUPERUNKNOWN. I woulda loved hearing "Pretty Noose," but I was happy with what I got. Chris Cornell still has the voice, thats for damn sure. I was especially excited to see the drummer Matt Cameron, who drums with Soundgarden but also Pearl Jam. He's one of my favorite 90s drummers.




After a nice break where my buddy Matt and I acted like idiots...




Nine Inch Nails came on and they certainly put on a show. The stage had these rolling backdrops that changed every song. There really was an onslaught of songs with really no breaks. There was only one minor break toward the end where Trent addressed the audience. His voice and the music copied the albums to a capital T and sounded great. I heard complaints from people in the lawn area of the venue that NIN was quieter than Soundgarden but I didn't experience that. We got pavillion seats, so we were in the pink.








If I had ANY complaint on NIN's set was that they neglected to play anything from "The Fragile." I woulda loved hearing "the Wretched" or "Somewhat Damaged." Oh well. They played lots from pretty much all the albums from Pretty Hate Machine to Hesitation Marks. A visual treat. If you download my Morning Show Podcast episode #262, you will hear a bit of audio from the show. I also recorded little snippets of video I'll upload to Youtube at some point.

One cool thing that happened was inbetween sets, we were talking with a couple in front of us and I didn't say much. The dude mentioned he had kids and the wife and I could take our kids to a kid friendly beer place in Lansing he knew of. then I mentioned "Well, its hard for us to get out because my five year old has autism." And he said "whoa! Our four year old does too!" So we swapped autism parenting war stories for a bit. I woulda loved to talk to them a bit more about it, because autism parents love to chat about techniques that work and what not. But Trent walked on and interrupted us! HA!!! But thats the third time I casually mention my son's autism to a couple and they say they have the same thing going on with their kids! So weird. You think you are struggling alone as a parent and no one understands what you got on your plate and all around are people going through the same thing, silently. I just thought it was a cool moment.

Most of the people at the show were around my age, mid-30s. I saw no fights and no arseholes. Everyone was getting along, reliving their teen angst and enjoying every second. And both bands put on a damn good show and sounded just as good as they did 20 years ago. I am now assured that the 90's are very much alive and I'm glad they are still around. (and me too!)

If you get the chance to see this tour, I hereby recommend it.

T

Saturday, November 09, 2013

Scotty and his Autism

Sometimes I'll get emails or messages asking how our son Scotty is and how things are going since he was diagnosed with autism. Slow, but progress happens almost daily. We've had meetings with doctors about courses of action, tried a couple of medications and I think we got a rhythm now that makes him very happy (and US VERY HAPPY!). As you can imagine, there's all sorts of emotions that come with having an autistic child. There's things we cannot do and we get comments, stares and judgements accordingly. Its hard for us to do anything. Everything has to be planned around him and the possibilities. But I think now we've got a great stride and I am happy.

He's even progressing with his learning. A while back I bought him an Ipod and he's discovered the joys of youtube. He watches little cartoons and things on it, as well as he now seems to have an interest in playing Wheel of Fortune ad naseum. I don't mind because he learns letters. He's quite good at it.

This week I took a chance and decided to show him how to use a desktop computer. The mouse work took some doing, but he caught on. I gave him his own log in side and he's going to google and pulling things off the net. Mostly pictures he likes. Today he pulled off a ton and wanted them printed out. So I put them all on one page using InDesign and printed them out for him. He's extremely happy with it cause he did it too.


Point is, he used a mouse. Can type his own name and make selections he wants. I'm preparing him for a computer age. He's really taking to it and enjoying it.

Also, his vocabulary is expanding. He's trying new words. And he's added "please" and "Thank you" to everything, instead of just shouting what he wants as one word. He'll say "help please." and we'll help whatever it is he wants. Progress. I'll take it.

To my delight, lately he's been obsessed with Ghostbusters. So we started watching the cartoon series. Usually he will just watch the menus or the intro music to a cartoon. But he watches the episodes all the way through with me. He loves them.


Watching the old cartoon with him again has made me nostalgiac for my old love of the Ghostbusters cartoon days. As a kid I was a massive fan of it, and of course, the movies. The last Christmas I ever had when I was nine (long story..I discussed in on the blog here back in 2007. Give a read right HERE) I got the FIREHOUSE playset. I wish I could get it for him and even the figures. They are collectors items, rare and outrageously priced now, but I am hoping I can find a cheap lot somewhere. I'd love to play them again with him. I know it would be cool to watch and experience through his eyes again.


On the other kid front, James is making progress as well. He seems way more playful, interactive and talkative than bots did when he was that age. Still not saying many words however, which has us understandably concerned. But we are just playing it day to day at this point. Today he was saying "DADA" clearly over and over. And he's only 1 year and a few months old. No rush.

Anyway, thats the update on them. Thanks for all your messages and thoughts. We appreciate it, believe me. Now excuse me, I gotta go watch some cartoons with the kid.

Tuesday, July 02, 2013

Short Story: "THE FEAR" 2013

I'm going to share with a short story I just wrote called "The Fear." Probably one of the most personal things I have ever written. This will be collected in a book with all my old poems and short stories sometime next year. For now, enjoy this.

_______________________

-->
“The Fear”           --2013

I walk down the hall of the school, carrying my 9 month old in his car seat. It grows increasingly heavy as the unknown distance to our destination swirls in my mind. Far ahead in my oldest son, four years old and we’re here because of him. He’s set up for free evaluations and speech therapy for his autism. It is all we can afford. This is the best we can do. I holler out to him to stop and let me catch up to him before he goes too far. He ignores me and continues on. The car seat gets heavier and heavier with each walk. The old familiar sweat hits me and I start to feel the chest pounding, like clockwork. 

I'm angry today. Angry at the woman who cut me off on the way here. I'm angry about the person who was turning into the spot next to me at the grocery store and didn't recognize I was trying to put my sons in the cart but still sat there and honked impatiently. I'm angry I have to juggle both of them alone on this appointment that I don't know much about. I'm angry at myself because I think its a waste of time. 

The doors are closed around me. Inside there are moans and echoes of sound. I know what it is. They are too familiar. The stench of old urine burns my nostrils. Then it turns into the new carpet smell that I remember from when my parents put new carpet in our old home. I am five again. I am hiding under the table from him. I have my He-Man sword at the ready to protect myself. He won’t bite my head again. He won’t be angry at me anymore. I cower and cry, scared of him. My own brother. He walks by and doesn’t take notice of my hiding. I dare not lunge out to strike, because he has done nothing wrong. He doesn’t know better. Next week he’ll be going to a home for people who can give him the care he needs. My parents cannot do anymore for him. They’ve admitted defeat. I remember the pain in my mother’s eyes as they drop him off each time after a visit, resigned to the feelings of failure and grief. “How could this have happened?” They do not speak it. Their love for him conquers all despair in their minds. Their hearts reach out and slap down the anger. I don’t know how they did it.

I’m back in the hallway, still walking toward the door. The moans increase. A door opens near me and I jump slightly. I try not to act startled. Its rude to react or look back. I hear her. A girl born with the same disease as my brother. She waves at us and says “HI!” I wave back and say the same. Her teacher tells her “Good job!” We walk on, not to interrupt their training. My son is far ahead and has turned the corner. He knows where to go and I do not. I catch up with him and we wait outside the door where his speech therapy is. I sit the baby down with a great relief to my shoulder and back. Man, I’m out of shape!

The smell of urine still lingers. It has sunk into the carpets that should have been replaced long ago. But the school most likely cannot afford it. The moans and sighs continue. The rooms are filled with other kids that have this disease. They can never live a full life. They'll never read a book, enjoy a concert or fall in love. I pull out my phone and I try to ignore it. I want to run and hide. I’m afraid again. I feel like my brother is right around the corner and I don’t have my He-Man sword. It ‘s in a landfill somewhere. And he’s in a home an hour north of me. And that was thirty years ago. The fight is still in my mind.

I resign to the idea that I don’t want to return to this place. Surely my son isn’t this far gone. The sting of failure hits me. The question hits my mind. “How could this have happened?” The sweat on my brow warms in the air and I brush it away. The instinct remains. Run. Hide. Just go.

The door opens and we are greeted. A little girl emerges as her mother comes down the hall. She speaks and it’s the same pattern and style as my son. She’s just like him. In fact, maybe a little worse off. I instantly feel for her and her mother as they leave. She’s skipping down the hall while holding her mother’s hand. The mom is happy to see her and is proud that she’s doing so well. I find myself smiling after them, because I know what they are going through. The moans and echoes of the past are no longer in my ears. They’ve been drowned out. I didn't notice it.

We enter the room and I sit in the back with the baby. I get him out of the seat and hold him close, to keep him quiet while they work. In my mind I think the thoughts:

“This is useless. He won’t cooperate. He never does.” I hate myself for thinking it. But its the only truth that I know.

The flash cards go up. He names each object without effort. A ball. Cat. Dog. Cookie. Bird. Truck. Boy. Girl. Tree. Castle. House…. They look at videos and pics of his classmates from last year. He remembers all their names and smiles when he sees them on the ipad. He’s smiling and happy. He reaches out, for the first time in a long time, he reaches out.

My eyes sting. Tears flow out freely like it was air out of my lungs, so involuntary. My bottom lip quivers and I bite it to keep from making a noise. I quickly wipe away my face so I don’t show the emotion to the teacher. I don’t want to be seen this way. The baby in my arms stars at my face, wondering what is the matter. Then smiles when I notice him looking. He reaches into me for a hug. Then he bites my shoulder to soothe his teething. I cannot stop crying. I keep biting my lip to prevent sound, to not be noticed at all. Please teacher, don't turn around to see me. I am too proud for a stranger to see me this way.

In that brief moment, my fears are gone. All that remains is joy and anger. Joy at seeing him reach out further than I’ve ever seen. He’s almost showing off for me. “He’s gonna make it,” I think. “He’s gonna beat it!” I am angry at myself for thinking the fear earlier. I'm angry at myself for getting mad at the grocery store over such a small thing. But I pat myself on the back for not running away like a coward. The fear of the past dissolves in the air before me like smoke. The memories of the past are gone. If my brother could reach out like my son, he’d be as proud of this moment as I am. I want to run over and hug him tight. I want to jump up and down with complete abandon. We’re going to beat it. We’re going to beat it!

I suddenly think that I can be a better father. Maybe it’s the only thing I am truly good at. I still need work. My anger needs to subside. My compassion needs to be improved. I need to let the old battles go. I need to quit the part time job I hate and dedicate my life to creating art and creating a life for my sons. It would be my greatest accomplishment. I need to fix myself, finally. I see that now. I see what he is. I see what I can be. He helped me see that. I’ll never underestimate him again.

It is over quickly. I could have watched it for hours more. I suddenly don’t want to leave! He gets a sticker for a job well done and we leave the school. The smell of urine in my face is gone, replaced only with the scent of fresh cut grass outside. We get in the car and I strap him into his seat. I kiss his forehead and give him a hug. He hugs back and says “thank you” in his cutest voice. I don’t know why he says it, but he does.

I cry the whole way home.