The Joey Vortex

Cold enough for you?

WeatherAbsolutely cold enough and then some in Sioux Falls. Can’t remember exactly when this hard winter commenced and I sure wish I could see the end from here, but not yet. Here’s a pic of the week in progress, courtesy of a local news outlet.

Those who care for autistic people and various other conditions know the term “sensory issues.” We all have textures and sensations that drive us nuts, but special needs people can take these to, well, special extremes.

In Joey’s case, he doesn’t like anything on his head. No headgear. In subzero weather.

He doesn’t like gloves or mittens, either. In subzero weather.

All we can do is make sure he’s not out in the elements any more than necessary.

Hey, bad parenting is the cause of autism, right? So why not celebrate that by under-dressing the kid in bad weather? Because it’s all about bad parenting, right?

Fear the Joey vortex.

Happy 20th!

Joey turned 20 yesterday.

We had friends over to celebrate with him. Well, they celebrated and he kind of did his own thing.

IMG_20140225_175640_235I admire their creative gift, something Joey will really appreciate (he decided he was tired before we really got into opening presents.) Here they are (along with Melissa) displaying a pizza box from a local market. This is Joey’s favorite treat. They each made a little card in the shape of a pizza slice, and there’s a gift certificate for the real item taped to the box.

Thoughtful, personalized gifts mean so much. Autism isn’t about “stuff” – it is about experiences and relationships. Stuff can help mediate that, but simple pleasures, some of which are quite mundane and others of which might seem odd, are a bigger deal.

Warm presence, patience and the personal touch are the best presents Joey gets.

Close shave

Care givers appreciate businesses that are comfortable with our special needs kids.

Finding the right place to cut Joey’s hair is a challenge. Some high volume salons are too loud, with blow driers running and other kids crying.

We are fortunate to have a great place here. It is a small salon so it’s seldom too crowded or loud. The young mom who runs it had an instant rapport with Joey. Even after she changed location a few years ago, Joey just rolled with it. So this is one of those aspects of life that was worry free. Until last week.

Joey wouldn’t get out of the waiting area chair. He smiled and crossed his arms over his chest. I couldn’t coax him out with words. The stylist couldn’t sweet talk him out of the chair.

I finally grabbed him under the arms, lifted him up, and began to drag him over to the adjustable styling chair. He went limp and became dead weight – then he tensed up and resisted. He stomped back to the waiting chair. And kept smiling.

Then he got up on his own – “Success!” thought I – went over to the styling chair, and shoved it off of its rubber mat and into the wall. With a smile. Then he went and sat in the waiting area again.

The stylist had the presence of mind to ask if she could come cut his hair right where he sat. “Yesst,” he whispered. (Joeyism: affirmatives are whispered, negatives are loud.)

So she did. She cut his hair right there in the waiting area, even though this was making extra clean up work for her to do after.

I tipped generously, for sure.

Melissa noted that the problem was mostly bad calendar work. She took Joey to his standing music therapy session earlier in the afternoon, then to the drive thru for quesadillas. Usually, he does only one such outing in an evening – but I’d scheduled the haircut on top of it. The normal pattern would have been just music, or just haircut, followed by the drive thru.

Did I mention he turns 20 this week? Wears ya down, two decades of planning and adapting everything like you have a toddler in the house. Thank God for patient folks who make that a bit easier.

TMI, Mature content and all that

Minnesota Mystery Tour 004OK, let’s just go for it. What do you do about erections?

All guys become obsessively aware of them at some point. Heck, it’s a life long thing – there’s a whole pharmaceutical industry built around maintaining ’em.

Of course special needs guys don’t always have the social skills to manage theirs (I know, I know, “That’s not unique to special needs guys,” you’re sayin’.)

Jokes aside, there are a whole range of uncomfortable problems care givers must deal with when this force of nature kicks in. What’s the graceful response to public masturbation, for example? We have a friend whose kid “keeps it in his pants” but wants to grind against the nearest available female, like a small dog coming after your shin.

Sometimes it’s just a kid walking around with the condition “obvious.” I mean, he didn’t do anything to self-stimulate; it’s just there. So what do you do? It’s not a “behavior” you can talk out or redirect – it has a life of its own.

Then there’s the occasional kid who is modest, uncomfortable and confused by the whole thing. Our poor guy makes a distressed face like he’s getting sick, goes to bed and pulls blankets over himself until the problem goes away by itself.

Obviously, raw panic is not the proper care giving response. Hard to say what is. I have a Canadian friend who played minor league hockey, and he has an old coach’s saying about staying composed, “Keep your head up and your stick on the ice.” But that’s just so much joke fodder if you’re talking about erections.

I don’t have great advice to share here. Just commiseration.

But since I’ve manned up and shared this hard topic, I wonder if the Cialis folks will send me one of those complimentary claw foot tubs in which to relax?

Social Story

“Social stories” are mini picture books used to help a special needs person develop behavior or prepare for an event.  You might remember that we used one to help Joey get ready for his brother’s wedding.

I was goofing off a bit today, and started assembling a “Joey board” on Pinterest. You can check it out right here.

As I picked through my picture files on the computer and pinned them on the board (sorry for all the jargon, which I am sure is, like, so ten minutes ago for more savvy internet people), I realized that a “social story” was in view. Except it was Joey, through his pictures, teaching me.

IMG_20130827_173410_224The net impression is, “Dad, I am a happy guy, especially around my family and doubly so around food I enjoy. But don’t put me to work and expect smiles.”IMG_20130817_094812_403

What’s the story unfolding in the life of the person in your care? And what can it teach you?

But how many people get paid to eat pizza?

A study from Vanderbilt University, summarized here, finds that autistic adults can experience behavioral improvements through the right job.

The research puts new emphasis on the potential for adults with autism to develop and improve over their lifetimes, said study author Julie Lounds Taylor, an assistant professor of pediatrics at Vanderbilt University, in Nashville.

“We have assumed it’s really hard to budge autism symptoms in adulthood. Drugs are targeted to problems like acting out, for example,” she said. “But this study suggests that these adults need a place where they’re intellectually stimulated, and then we’ll see a reduction in symptoms.”

The study does not shy away from the challenges:

  • “Insight is one of the characteristics people with autism typically may not have…” In other words, they’re not going to say, “Hey Mom, that sushi chef training I’ve been looking into lines up well with my interests and aptitudes.”
  • “About 50 percent of adults with autism spend their time in sheltered settings, and a minority work in the community, according to Taylor. Most have trouble holding steady jobs, she added.”  Heh. Sheltered settings.  Joey going to a group home in 2015 is actually to shelter his aging parents from further wear and tear.  But he’s always been good at steadily creating laundry, broken appliances and other vocational opportunities for us.
  • “…restricted interests, repetitive behaviors and difficulty with social interactions.”  Never tried putting that on my resume.  But such qualities might make it stand out from the pile on HR’s desk.

But seriously, it is a hopeful bit of research, and care giving is all about the hope if you want to stay sane.  We are blessed with a number of local businesses who work with the public agencies to employ special needs people.  And there are some creative vocational training programs in town as well.

Here’s hoping that some of the local pizza places will create jobs for taste testers.  Joey would rise to the top of that career field.