Sunday, April 2, 2017

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.


sharky said...

Sometimes I feel like broadening the autism spectrum so wide to make it more inclusive could be doing a huge disservice to your son. I don't think a lot of people realize how profound the issues can be as more and more milder cases get focused on, at least as far as social media goes.

I could be completely wrong about this and looking at it the wrong way, I do that a lot. It's just been on my mind recently due to a lot of instances at work.

Someone Said said...

That is a challenge for sure. I do not think the Rainman stereotype is used much, but focusing on the magic autistic kid is doing a disservice.

I know you see a lot of real life stuff at work and it has to add to the stress.

And do not get me started on Autism Speaks, they do not speak for my Son!