The struggle to have “home”

This evening had potential to be homey. I had some time off, and Melissa and I did some Christmas gift shopping. We had beer and appetizers at a sports bar that just opened nearby.

Joey’s had his bath, the dog’s been out, and we even have a fire going, which is quite delicious with temps outside dipping into the teens.

Time to sit back and enjoy the quiet. But Joey isn’t falling asleep.

He’s wide awake in his room. No rhyme or reason, although some of what he’s expressing over and over is holiday excitement. “Soon there will be PRESents. Soon there will be PRESents.” But this is just one part of his verbal symphony. There’s running repetition of movie ads and recitation of things he heard others say during the day, all weaving in and out.

“Disney’s CLASSic collection. Disney’s CLASSic collection. ‘JOE-ee, we already did that. JOE-ee, we already did that.’ Soon there will be PRESents…”

Care giving can take out the simple things that make life gentler and sweeter. You can’t just sit by your fire, relaxed and satisfied that they day’s labors are done. New chores line up in the shadows, in the restless voice down the hall, in the floor and walls of what should be a place of refuge and rest.

Funny, I don’t remember that particular movement from “The Nutcracker”

Over the weekend, the three of us enjoyed an outing to see the Moscow Ballet dance The Nutcracker.

Joey liked it in his Joey way. That is, he stayed in his chair and didn’t protest. He likes music, color and motion. So we think this was a winner. Melissa and I sure liked being all together for a special holiday event.

Now, one of the ways that Joey is able to stay put in a chair is via his “fidgets.” Like many autistic folks, he stays connected to the world by motion and touch. This took many forms over the years, most of them undesirable, like chewing holes in the neckline of his t-shirts or whacking his hand against his head. With the help of therapists and teachers, we eventually arrived at the use of “fidgets,” flexible things that he can hold and shake or wave. Here’s an example:

Princeton alumnae will excuse the use of their colors in this fidget array.


So, at the ballet, Joey had a fidget to help him stay centered and calm.

Of course he dropped it once the lights were down and the ballet was in progress.

He leaned over and groped around for it. He said something like “You need to get the fidget” over and over, fortunately using a low “indoor voice.”

Then he tugged Melissa’s hand and tried to pull her over to poke around on the floor, too.

“You will have to wait for fidget” I hissed, which restrained him for about a minute. Then he went back to “You need to get the fidget” and yanking on mom.

When the lights came up entr’acte, Melissa and I looked all around and couldn’t find the fidget. Joey got tense and stood up, in his “I’m standing up because I’m done with this and am moving on” way.

Finally, I got down on a knee and stared at the floor. There was the fidget, which happened to be white, well concealed by curving within a white pattern in the carpet.

The second act went well.

Thinking about a family trip to hear a community performance of Handel’s Messiah this weekend. Will have to check the floor coloration and bring a properly contrasting fidget this time.

Routine or Not Routine?

It is Thanksgiving weekend and the routine has changed. Or has it?

For our son, who has a very good long-term memory, it is the 19th time we have spent the day in the kitchen, stirring, chopping, popping our heads inside the oven every 15 minutes. The smells are the same. Everybody is home. The laughter is the same. We are very busy, yet moving at a relaxed pace.

Everyone chooses their favorite dishes. For our autistic son, it is cornbread casserole. Later it will be vanilla ice cream. This is very routine!

Friday comes and Mom begins playing her favorite music for the season, in particular, Elisabeth Von Trapp’s album, A Christmas Song. Mom sings along, as she has done for over 10 years. For the first time, however, Joey comes in and sits with her, quietly waving his “fidget” in front of his face. Then he stands up behind her and tries to sing with her as she harmonizes Dona Nobis Pacem (Give Us Peace) with the artist. This is new. This is a first!

I was deeply moved and kept on singing as he tried to pronounce the words and sing my part with me. A new routine has begun!

And another reason to give thanks…

Happy Thanksgiving to you all. We are thankful for all who’ve taken a look at our blog, and grateful for the ways in which you’ve encouraged us and moved us to think and write more about care giving. May God bring unexpected blessings into your days.

One thing for which care givers can be thankful is the way those in our care create and prolong some of life’s sweet routines.

“What? I thought you guys said the routines stink.”

Well, yes, they do. But in with the stinky stuff is sweet stuff.

As much as care givers want a special needs kid to progress and lead a full life, some childlike things linger. A typically grown up kid would be (rightly) mortified if mom and dad trotted out the kid’s elementary school artwork for the holidays. But taking care of a special needs kid means it is OK to use arts and crafts, old and new, to enhance the holiday fun.

Those in our care stay close. Too close for comfort some days, but at the holidays right there with us, year in, year out, while the rest of the world moves on. And there’s a sweetness about that for which we can be thankful.

“Good job clean up the floor” – The Sequel!

Thank God, it was funny this time.

It didn’t involve bodily fluids, waste or the undoing of work previously done.

But like the recent superstorm, several forces converged at once.

Joey was saying, “Good job clean up the floor,” which had us looking down and around for the mess.

We couldn’t detect anything by sight, smell or touch, anywhere. We figured he was just expressing a memory of last week.

Then it was time for his bus to come. I went to get his sweater and coat, which are usually draped over a kitchen chair – and there was just an empty chair.

Like the dummy I am, I asked him where he put his coat. “Good job clean up the floor” was his reply.

After much frantic flitting from room to room in a useless search, I made the connection. I went into the laundry room, and there were his sweater and coat stuffed in the dryer.

Don’t ask me why he did that. I mean, it’s obvious he was saying, “I don’t want to go out. I want to stay home and goof off.”

But his connection of the dryer and the coats? Your guess is as good as ours. He has wisdom all his own. If only he could use it for good!

Did we mention it stinks?

“That stinks” isn’t a euphemism that our family uses very much. So how come this blog isn’t “Sometimes Care Giving is Stupid” or something like that?

There’s a story I find helpful when it comes to care giving. It’s short:

“A man had a fig tree planted in his vineyard, and he came seeking fruit on it and found none. And he said to the vinedresser, ‘Look, for three years now I have come seeking fruit on this fig tree, and I find none. Cut it down. Why should it use up the ground?’ And he answered him, ‘Sir, let it alone this year also, until I dig around it and put on manure. Then if it should bear fruit next year, well and good; but if not, you can cut it down.’” (Luke 13:6-9 ESV)

The salvation of the tree involves manure. Stinky stuff. Goes on smelly, brings forth pleasant fruit.

Sometimes, care giving is literally stinky. Most of the time, it’s stinky in the sense of spreading stressful, seemingly unfair and impossible demands on a family. But the demands can be fertilizer. They can bring out the best in us, making our lives more fruitful, more lovely.

Over the years, we’ve planted a few trees. It’s always been a joy to watch them grow, imperceptibly, from tentative sticks in the ground into impressive shade-casters. It’s a like joy to look back over years of care giving, and see our lives made different. Acceptance replacing anxiety. Healthy boundaries and a gentler pace replacing guilt’s frantic activity. Honesty replacing the wasted energy of phony courtesy.

Personal progress can grow as stealthily as a tree trunk. It took years to make my first hang-up on a telemarketer. For most of my life, I wasted time (and generally got stuck buying crap) because I tried to make every conversation graceful, even if I didn’t want the conversation and it didn’t deserve much attention. It was a combination of high standards and dinged emotions. The stinky “fertilization” of care giving took away my energy for that nonsense. Hanging up on telemarketers means saving my energy to pour into fruitful relationships.

Don’t get down on yourself when the stinky season seems long and the fruitful stuff seems slow to grow. The little story includes patience: “Sir, let it alone this year also…” Keep giving yourself those stinky days and weeks and months and years. Don’t see failure, smell fertilizer.

Right Where You Are

“In some ways suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.” Viktor E. Frankl, Man’s Search for Meaning

One of the inner battles care givers fight is with the thought, “These demands are taking me away from everything I should be doing.” Even when we can’t put it into words, we sense some purpose for our lives. It might be daydreams; it might center on our job, a hobby, or a goal. Care giving intrudes on such pursuits, puts them on hold or wipes them out.

There is an alternative to feeling angry, used up and deprived.

I had a couple of helpful examples in the last week.

I was talking to a woman who is very active in the life of her church. She’s always in the thick of leadership and projects. She had finished several big efforts, and was feeling a bit adrift, asking God, “What do you want me to do next?”

She became aware that “next” was all around her in the needs of her extended family, including a relative entering skilled nursing care, another on a transplant list and their immediate family members. “Right now, my purpose is right here in these family needs.” Those situations are not distractions from a meaningful life, they are a source of purpose for each day.

A few days later I had coffee with a career educator. He’s in an ideal setting to use his intellectual gifts and share his passion and expertise in his field.

But he’s spent the last few years scaling back his teaching and meetings to serve the needs of his wife, who has a rare condition requiring constant care. He’s found meaning and even satisfaction in caring for her and being her advocate.

“The first doctor said, ‘There’s no treatment for this.’ I came back with three articles from places giving effective therapies. I was told that institutionalization was inevitable. But here it is years later and we maintain our life at home.”

The title of this blog is “Sometimes, Care Giving Stinks.” Yes, it really does. But if we can get past the smell (the offense to our high sense of self), care giving can give us a whiff of our life’s sweetest meaning and purpose, right where we are.

“Good job clean up the floor”

One energetic weekend, we got a bunch of “take care of the family” tasks done. It felt like the week ahead would have a gentle pace. We felt fruitful.

Part of our success was the laundry. We had a week’s worth of underwear and school clothes ready for our youngest kid. So the weeknights looked to have more time for family dinners, chat and recreation instead of hectic chores.

On Monday morning, the alarm went off. The kid heard us stirring and got up to get dressed.

He was standing in the hall, saying “Good job clean up the floor” over and over. It was a phrase we came up with to praise him for picking up his room; he’d taken it over to say, “Hey, there’s a mess for you to deal with.”

Sure enough, he’d managed to get dressed, pee through one set of clothes, put on another, and get pee all over those, too. Then he took some of the wet clothes and tried to put them away – in the drawers full of clean clothes.

A good chunk of our weekend effort sat in pee soaked piles. We stood there sulking over another night in the laundry room, washing loads we’d just cleaned the day before.

You First

Alas, another morning when we were going “off-schedule.” We were taking our son to a new doctor. He would not be going on his fun bus ride to his fun morning routine. We explained the change in agenda to him that morning and we were amazed that he appeared fine with it! He was more interested in talking about his Saturday pizza dinner than anything else! (Who was this man and what did he do with our Joey?) It was too good to be true.

Then there was the doctor visit. Joey walked in to the office from the car without resisting. He waited patiently to be called in. He cooperated with the nurse while she asked questions and took vitals. He paid attention to the new doctor and answered questions. He did not become “weak in the knees” and come close to a seizure. He showed a sense of humor and when asked to sit down, he sat on his heels in the corner instead of in the chair and laughed . We all laughed and then he moved over to the chair. Everything that almost always went wrong did not go wrong.

However…God does have a huge sense of humor. In Joey’s younger years, our watch on him was very close. We either carried him or held his hand everywhere we went. Now that he is older, we “keep an eye on him.” Well, so we think. After the successful visit to the doctor, we entered the elevator to go to a different floor for the blood work. Tim and I exited the elevator to find, only after the elevator door had closed, that Joey was not there!

Fear and panic struck me. I was immediately grateful that we both had cell phones. I stayed behind. Tim boarded the same elevator and went to the ground floor. He found Joey wandering around there. Joey exited onto the floor that he recognized as the floor we had entered upon when we arrived.

Next time we take an elevator with Joey, it’s “You first” when it is time to exit!

Good help is hard to find

So two fails this week.

We’re just underway with a new respite provider. We are so grateful to have funds available for folks who can watch our son while we get some time to NOT CARE GIVE.

Anyway, we were planning to go out for a fun evening at a friend’s house. I had to get time off from my second job to open up the evening. Took care of that. All looking good – new respite provider seemed enthused to get started.

And then…

Melissa gets an email from her, basically, “Oh, wow, so sorry, I can’t come on that night. I have to work that night and didn’t see it on my calendar.”

We have a friend who hangs with Joey at church, which makes it possible for us to be there without spending the whole time, you know, CARE GIVING. Our son isn’t one to just go sit cooperatively through a service. His older brother used to be the “policeman,” keeping him in the pew and not too loud, but now that his big brother is at college this other gent stepped forward to take over, and has been a great help for several months.

And then…

Last Sunday Melissa volunteered to host the refreshments after the service. We’re downstairs having a nice time and visiting with folks, when she notices the guy… but no Joey.`

We figured Joey was just following him in from the hallway, but then the guy starts chatting with people and playing something he found amusing on his smartphone. So Melissa speaks up:

“Where’s Joey?”

“I don’t know. I think he’s hanging around outside.”

“I guess I’d better go,” said Melissa with as much calm as she could muster, leaving the celebration to do a parking lot search and rescue mission. Joey was fine – other kids were around so he wasn’t all alone – but our nerves? Not so good.

It means a bunch when folks offer or accept a request to help out. The anticipation of a respite day or night brightens our lives. But the disappointment when it doesn’t happen makes us leery of even trying to arrange another break. It leaves us frustrated with our situation (like that needs any extra agitation) and feeling like a couple of annoying flies buzzing around a busy world’s head.