The anxiety of relaxation

IMG_20130727_131528_251 What to do with free time?

The people we care for don’t like being stuck at home any more than we do. They need recreation, stimulation, relaxation and all the stuff that helps us endure life’s demands and challenges.

But the very nature of special needs can make recreational activity stressful. Lots of extra work, planning and the potential for the day to… what’s the scientific word?… suck. You can plan and plan and plan, pack and pack and pack, and any little thing can turn a lark in the park into a slog through hell.

IMG_20130727_122443_905Last weekend, we took a chance, packed a picnic and headed for one of our state parks. Even took the dog along.

It worked. Have to admit I was tense all the way there, but every blessed (literally) thing went well.

The weather was mild, unusually so for July.

The park wasn’t too crowded, and the people we encountered throughout the day were great.

The spot we found afforded both sun and shade; cool grass and warm sand.

There was a playground with swings close by; swings are one of Joey’s fastest ways to settle himself.

Joey is soothed by watching water move, and the Missouri River bank was just right.

IMG_20130727_133930_731Melissa convinced Joey to get his feet wet, and when he did he smiled.

I wish I could say that every effort at rest and refreshment turned out like this. We frequently find ourselves frazzled after what should have been a fun day.

But this one turned out well, the early anxiety evaporated, and we came home refreshed and happy.

And the dog slept well, too.

Even the pros are amateurs!

I caught this intriguing and uplifting article in the summer issue of my college’s alumni magazine:

I, Robot
By Alicia Di Rado
Children with autism relate to Maja Matarić’s ’bots

The story is a welcome and hopeful report of a possible breakthrough for autism therapy,

…socially assistive robots can help people, especially those with special needs. Among those who seem to benefit: children on the autism spectrum.

“No one knows why robots work so well with some children with autism. But we and others have observed repeatedly that when many children with autism interact with socially assistive robots, they show behaviors they ordinarily wouldn’t express, especially not with other people,” says Matarić, director of the USC Center for Robotics and Embedded Systems and co-director of the USC Robotics Research Lab.

But what really caught my eye (and my heart) was this,

Certainly, Matarić takes a scientific approach to her research on the robots’ benefits to children with autism. Robots should never replace human therapists, she says. But, as a parent, she’s also enthusiastic and hopeful. If robotics technology improves and clinical trials proceed, she expects robots will be used to help certain children with autism within five years.

“For a spectrum disorder like autism, one magic pill isn’t going to happen,” she says. “If use of a robot is affordable and not damaging, why don’t we try it?”

“Why don’t we try it?” See, even the people with credentials and jobs can be amateurs (doing it for the love) just as much as the rest of us poor schlubs cramming our care giving into daily family routines.

Whether the love is because we share flesh and blood with a person in our care, or because someone has a big heart and mind calibrated to embrace the wider world, let’s be thankful for the amateurism that says, “Don’t know if this will work, but let’s give it a shot and see if it helps.”


One challenge and glory of the care giving life is that it’s mostly on-the-job training. You’re always learning as you go, making stuff up, doing trial and (lots of) error.

You can never read enough or attend enough seminars to get ahead of the game. You’re always an amateur.

Ah, but in case you forgot, Merriam-Webster reminds us that amateur has a most excellent root:

Origin of AMATEUR
French, from Latin amator lover, from amare to love

You blunder through care giving because you love someone who needs your care.

Care giving love is like teenage love, minus the sex. You look way stupid, you have setbacks that feel like the end of the world, and you keep throwing yourself back into the effort.

Because at the end of the day, care giving is an act of love.

Sing it, Dean-O…

Hand over hand

If you’re caring for a special needs person, you know the hand over hand schtick.

Your loved one might have a physical impairment, or neurological discomfort with fine motor work. So to get a birthday card signed, or cereal consumed with a spoon instead of like bobbing for apples, you go hand over hand. Your hand enfolds the hand of the one in your care, and you guide the desired action.

It can be a very tender interaction. You don’t grab their hand and force the action. Like I said, you “enfold” their hands with yours and sort of float through the action together. It feels like the stupid old Ouija board thingy*. You’re not pushing the desired outcome but yeah, you are, with a ghostly, floaty technique.

Except today hand over hand became pain in the butt. I have a tweaked back just now, and it hurts a bunch. Joey finished dinner and I limped along with him over to the sink to wash hands.

Which in Joey’s case means hand over hand action. He’ll point one hand (never both) in the direction of the running water, but at best only wet a fingertip or two. So I have to enfold (ah, that sweet word again) his hands in mine and guide them into the water, help him rub his hands together and help him dry them off.

But he was ready to move on to post-dinner fun like videos and computer time, and he stood far from the sink. Even with my gentlest extension of his arms, his hands weren’t reaching the water. So I had to move him. With my tweaked back.

Dude, I wish someone would come and gently enfold me right about now. This hurts. But Joey does have clean hands.

*Gotta give Melissa credit for “thingy,” her go-to word when she can’t remember what something is called. And the Ouija board pointer is a thingy to me. Seriously, though, don’t play with Ouija boards.

At least WE had fun…

Our older son and his fiancee were in town on Independence Day and we had breakfast at a local diner.

IMG_20130704_100842_780As we came out, we realized that the Sioux Falls 4th of July Parade was approaching and we couldn’t pull the car out to leave. So we stayed and enjoyed a fun parade on a gorgeous morning.

Well, except the autistic kid…


Haters gonna hate, they say. And sometimes care givers just gonna enjoy themselves. Heh heh heh.

No fireworks

Independence Day is at hand, but some of the festivities are out of reach for those who are dependent upon care givers. Heck, they’re out of reach for care givers, too, because we are dependent upon the elusive cooperation of the people in our care.

Take fireworks shows, for example.

4th of July 2011 Sioux Falls 031When Tim was working his second job at the hospital (that’s over, thank God! Will post on it some other time), there was a great spot to watch the 4th of July pyrotechnics. The top of a hospital parking ramp provided an expansive view which included the sky over the Fair Grounds to the north and a country club to the west, both of which had big fireworks shows.

You think that would be ideal for our autistic kid. No big crowd to overwhelm his senses; the bursts at enough of a distance that they aren’t too loud; heck, he gets to watch from the comfort of his own familiar family minivan.

But we live at a latitude where “twilight start time” means 9:30 pm in the summer. So the kid is well into his night meds and wanting his cozy bed.

Getting there early to secure a front spot means he’s cranky because he doesn’t have his videos or computer. (Our minivan is old enough that it’s not tricked out with all that stuff).

So we end up walking him around inside the hospital because he wants the A/C. No snacks or drinks brought along can appease him.

So we’ve given up on fireworks shows while he’s here at home with us. Maybe July 4th, 2015 will work. That’s during his 21st year, when he should be in a group home independent of us, and we will be totally empty nest, independent of the daily care giving.

How about some of you? Do you have to skip parades, concerts, picnics, sports or other 4th of July traditions?