After a while of “writer’s-block,” I am back, with Joey’s help!

It had been a tough weekend for him, as he is beginning to learn about what it is going to be like to live with peers, by occasionally staying overnight in an apartment with some of them. We cannot predict which group home will have an available space on the weekend that he will stay, and so, although he will be living with men when he moves, some of his weekends have women staff and women guests. Last weekend was mostly women. Boring! Joey came home a bit agitated!

Early this week, Tim and I decided to take him to one of his favorite places – Famous Dave’s – a “rib joint” where Tim and I enjoyed spare ribs and Joey ate 2 large cheeseburgers with fries on the side.

IMG_20130827_173410_224Joey was not eating his fries much so I was being a “bad” Mom, and occasionally reached across the table with my fork and took one!

That was until Joey sneezed. Really sneezed. A very large sneeze that gently sprayed his fries with sneezy-stuff! This ended my bad behavior. They were not cheesy-fries, they were sneezy-fries.

It was so cool when Joey ordered a second cheeseburger. We didn’t ask for fries but they brought them anyway. I put the second cheeseburger on his plate but not the fries. He still had his sneezies.

It’s all like sex!

Our older son and his fiancee are in town. Yesterday we were at a tuxedo selection and fitting for the wedding party guys, including dad.

It was fun to connect with the groomsmen and a couple of the ladies who came along. After the fitting, which went like clockwork, we all went out to Buffalo Wild Wings for late lunch/early dinner.

OK, so what’s the sex business in the title?

Well, the things that made the day go so well all fell under the category of, “Hey, Joey’s not here!”

So much of care giving is like parenting little kids, trying to sneak in sex in the few moments when you are absolutely, positively sure they won’t be walking in on you. For care givers, the game continues way past the few years that young parents have to navigate. And I’m not just talking about sex – I’m talking about anything enjoyable.

The tux fitting was laid back fun because Joey wasn’t there.

The trip out to eat was fun because Joey wasn’t there.*

Real, pack up and go away vacations are on hold until Joey isn’t here.

Many social engagements get wiped off the calendar (if they ever make it on in the first place) because Joey’s still here.

We love Joey. We want only the best for him and there are plenty of moments every day when we delight in being with him. But he can be like a toddler who’s been here for almost 20 years. Every little pleasure we enjoy is squeezed into margins defined by Joey. It’s all like sex, see what I mean?

*Beer, chicken wings and sports on a big screen TV counts as sex, right?

Another moving story

IMG_20130817_094812_403A team from our church went into action for our community Moving Assistance Program, which helps folks with limited financial means relocate into better living conditions.  It’s a great program that pulls the community together to serve many elderly, fixed-income, disabled and even abused neighbors.

I took our autistic son Joey along.  Although he was sleepy, due to being a teenager rather than autism, he was a trooper and did his part moving boxes and light furniture.

So props to Joey today, because he was a caregiver for our community.

I’m proud of him, and I think he knows it.  He’s sitting on the couch processing the experience, and chuckling.  Always a good sign.


Heard the latest gag?

It goes like this:

Joey: (from his room) Gagggghh Gagggghh

Terrified Parent: Joey, are you OK?

J: Gagggghh

TP: (Running into Joey’s room) ARE YOU OK?!?!?

J: Yesst

TP: Do you feel OK?

J: Yesst

TP: Are you sick?

J: Yesst

TP: Does your tummy hurt?

J: Yesst

TP: Does your head hurt?

J: Yesst

TP: Do your adrenal glands hurt?

J: Yesst

TP: Are we in South Dakota or North Dakota?

J: North Dakota

TP: Are we in North Dakota or South Dakota?

J: South Dakota

Communicating with the autistic kid in our care is a challenge, to say the least.

  • He makes sounds of distress but can’t tell us what hurts.  This is especially fun in the emergency room after a seizure and a fall, when the doctors are trying to figure out if he’s suffering any head or internal injuries.
  • He considers answering questions a form of work, so he says “Yes” to get rid of us as quickly as possible.  This is also very helpful to doctors seeking diagnostic information.
  • To an either/or question, he simply answers with whatever we say last, also to get rid of our questions as quickly as possible.

Yet whenever we hear the latest gagging sound, we run in and start asking questions.

So who really has the pervasive developmental disorder?  Mom and Dad don’t seem able to comport our behavior to the realities of our experiences, do we?

If not for X, then no Y

I have some nasty leg pain going on. It isn’t caused by care giving but certainly makes everything more of a challenge, less by physical restriction than by keeping me crabby.

This morning I had to give up trying to sleep. Movement actually relieves the pain a bit so I took the dog for an early walk.

IMG_20130806_060812_661IMG_20130806_060834_989Coming toward the sunrise on our way home, we saw what to my eyes was a lawn ornament. Then it moved.

It’s just a little God-given parable this morning. If not for the leg pain, I would not have seen the sunrise and the deer. My sleepy-eyed efforts at photography don’t do justice to the beauty of what I was allowed to see. Consider me spoiled and selfish – I got the best of this deal. (You can click on the pictures for a slightly better look).

When it comes to care giving, it is worth pausing sometimes to look for grace hidden in the stresses and strains. Doesn’t make it all better, but makes it different. “If not for having to put up with (fill in some annoying aspect of care giving), I wouldn’t have (fill in the blessing).”

Teach me discernment and knowledge, for I have believed in your commandments.

Before I was afflicted I went astray, but now I keep your word.

You are good and you bring forth good; instruct me in your statutes.

Psalm 119:66-68