Hate to eat and run…

So last night there was a program at church.  It started with a soup and bread buffet.  Many of our son’s dining skills were on display:

  • The turn-the-table-into-a-sampler-tray-technique.  Instead of standing in line, Joey prefers to walk along picking up things, taking a bite, and putting the remainder of the chomped piece back on the table for all to enjoy.  Melissa managed to head him off before he got at the bread platters last night.
  • The if-this-were-a-game-show-event-I’d-win technique.  Can you finish your soup without a spoon before the people with spoons finish theirs?  Joey can.  Yes, the washing machine is running this morning.
  • The “Hate to eat and run” technique.  This one’s been around since he was a toddler.  Early on, we couldn’t make him stay put at the table.  So, we would sit down to eat, and he would run up, let us feed him a bite, then run off to do autistic stuff.  Touch the couch, pull on the vertical blinds, slam a door, etc., all in a precise order.  Then run back for another bite, then run off to repeat the cycle.  Can’t remember which of us said it, but somebody piped up with, “Hate to eat and run” as Joey raced off between mouthfuls.

It was kind of cute, but as he got older we worked hard to get him to sit down and eat like the rest of the world.

So now he has a modified version of it.  He sits long enough to eat, then goes off and does semi-autistic stuff.  Not quite as obvious as running a loop through the house touching things in a precise order, but definitely not mainstream behaviors.   Last night he alternated between sitting on a comfy chair in a dark room and standing in the entry way of the church, staring out the window.  For an hour.

But at least he respected the cold evening and didn’t just go outside to stand by the car.  And he respected the gathering in the church, not coming in to pull and tug at mom to “negotiate” an early trip home.

OK, gotta get to work here.  Hate to type and run…

A painful confession

2013-02-25_17-56-38_992OK, we admit it.  Sometimes, care giving doesn’t stink. It can be lots of fun and surpassing sweet.

Tonight we celebrated Joey’s 19th big ol’ autistic birthday.  The party was fun… I think we feel as pleased as if we’d had a night out.

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A church couple and two sisters who’ve watched Joey for us came over to honor him and share fun and food.  These are folks that Joey asks about from time to time, and you could see the wheels in his head turn pleasantly when we told him they would be here.

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Of course the real deal for Joey was PRESENTS.  He was relatively patient with all of our socializing but he was really waiting for the gifts – an array of requested videos – to appear for his viewing pleasure.  In his room.  Sans guests.

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But first Melissa inflicted our own version of Zero Dark Joey.  She made him read the cards that people had created and sent for him.

Darned if he didn’t actually do some decent sight reading.

2013-02-25_19-30-47_612Yes, he liked his videos best of all.  I peeked in on him as the guests were leaving and he was in front of the old TV and VCR, grinning and enjoying the haul of presents.

His joy is a precious gift to us.

Birthday shop ’til you drop

Joey is hit-and-miss when it comes to shopping. Sometimes he’s great in a store. Other times he’s bored while we’re in the parking lot and it’s an exercise in futility. So we do mostly online shopping for him.

As birthday or holiday approaches, we ask him what he wants, which is invariably a movie. On VHS. DVD is too much fine motor work to hold and handle.

Raising Joey expanded our vocabulary with many fine words. One is “perseverate,” defined by Webster’s as “continuation of something (as repetition of a word) usually to an exceptional degree or beyond a desired point.” So we usually order whatever movie Joey has been talking about “to an exceptional degree or beyond a desired point.”

Sometimes he complicates this. He doesn’t name a movie title, but he wants the VHS with “red heart” in the previews. Sometimes we guess what these are, most times not.

Once he’s opened whatever new videos we’ve wrapped for him, he starts perseverating about some other one. Sometimes he starts the change over on the day before the party. Or the hour before. And he can be mightily disappointed that we don’t have the right movie on hand.

But we get the last laugh. His birthday is in February, so when he starts his post-party perseveration, we get to smile and chirp (in a lovely harmony developed over years of practice), “Presents are not until CHRISTMAS!” Which we say all summer, so we often add “…and Christmas will come after it gets cold out and the leaves fall off of the trees and the snow comes back and…” Well, you get the idea. We go to an exceptional degree and beyond a desired point. Heh heh heh.

Birthday Planning

The autistic guy turns 19 next week.

We’ve invited some people he really likes. People he comes out of his inner world to ask about from time to time.

There’s a couple from church who understand special needs via their own adult son. Their gentle disposition toward Joey is something he really likes. There are a number of folks in our lives who are gentle with him – for some reason, known but to Joey, this particular couple stands out.

Then there’s a college student and her sister who’ve been respite care providers in our house. They also have a special needs family member and considerable understanding and patience. Besides which, they are young women just about Joey’s age. Definitely an improvement over middle-aged dad and mom.

Joey doesn’t have a big circle of special needs friends, although he’s always picked favorites at his school and community programs. But when we bring over someone with special needs, Joey assumes that a “program” is about to ensue, and that means work, so he goes in his room and shuts the door.

So his party guests will be his handpicked crew of “normal” folks. And mom and dad, “brown cake, white frosting and presents.”

Food fights

Care giving made me (Tim) a better cook.

Some of that was necessity being a mother.  Uh, of invention.  And sometimes just a mutha.  Somebody had to get dinner on the table.

"Cuban" pork chops, black beans, and 3 Red Necks cab from South Dakota's Prairie Berry Winery.

“Cuban” pork chops, black beans, and 3 Red Necks cab from South Dakota’s Prairie Berry Winery.

I chafed at this and fought it for a long time.  When I started working a second job, I got whiny about coming home and having to put dinner in front of other people.  I really missed having meals set in front of me. (Still do. Just less whiny.)

But I began to delight in the way my family enjoyed some of the stuff I cooked. I started to experiment with recipes and actually had fun, especially on Saturdays when I could take my time.

Some weekdays I would cook in the early morning so that dinner would be ready and waiting on me when I got home in the evening. Sure, I had to cook it – but it was there to enjoy at the end of a long work day.

Right now I’m doing more crock pot stuff on Saturdays, which gives us leftovers and helps keep the grocery bill down. I avoided crock pots for a long time for some reason; right now it’s my new toy and I’m having a blast.

Tomato-free beef chili.

Tomato-free beef chili.

Other food thoughts hover around Joey and his autism. We’ve been advised here and there to get him on this or that diet, and we tried some gluten free stuff when he was a little guy.

What we found was that the agitation that he experienced when served food he didn’t enjoy was more pronounced than any behavioral or other benefit we could see. And when he had foods he liked, he was calmer, happier and more social.

He likes Famous Dave’s Barbecue. At dinner there one night, we realized that if we were at another table observing him, we wouldn’t have known he was autistic. He was eating neatly (and heartily), smiling and chit chatting.

On Saturdays, I perpetrate total autism diet heresy and let him eat his favorite treats from the local market: glazed donuts by day and a take-and-bake pepperoni pizza by night. He looks forward to that routine. He interacts happily with me around it and is more flexible about going out and doing stuff when he knows those treats are going to bookend the day.

Melissa suffers from interstitial cystitis, which creates plenty of meal planning challenges. But even that’s made me a better cook, experimenting with alternative ingredients to pull off dishes we’ll enjoy together.

I’m not sure there’s any great point to today’s post. Just that care giving has made me more adept in the kitchen and the kitchen has made me a more flexible, responsive care giver.

“Experts”

When someone we love receives a chronic diagnosis, it follows that we are flooded with so much information that we cannot possibly stop everything we must do during the day and night to learn it all.  How do we forgive ourselves for not having given them everything they could possibly have needed to get through their lives in the best way possible?

It becomes worse when we find that one expert’s information contradicts another  expert’s, who also knows everything.

In 2005, when I knew I was not well, my doctor insisted that nothing was wrong.   I became depressed and finally fired her. But before that, I was sent to a psychiatrist, who misdiagnosed me with an eating disorder, based upon her own issues. When I went to a different primary care physician, he sent me to specialists, one of whom diagnosed me with a permanently disabling illness, the illness that was causing me so much pain and was why it was so difficult for me to eat.  My illness became much worse as I continued to eat foods which caused further damage.  I was taken off of a medication that was preventing frequent migraines.  I had to write a letter begging to have it re-prescribed and they see now that it causes no side-effects.  All because of a psychiatrist and her personal issues!

In the case of our autistic son, Tim and I learned from some experts what he needed, yet other “expert” decision-makers from the school district did not listen. When Joey was in second  grade, I witnessed him running around the classroom when it was not his turn to receive an independent lesson, picking up a heavy glass object, ready to throw it until someone who was teaching another child took the object away, interrupting that child’s learning time.  Yet, the school district would never fund someone to re-direct our son because they said he would become dependent upon that person.  We could not afford an attorney.

My son knew his alphabet, in both upper and lower case, before kindergarten.  The  teachers gave him little reinforcement, only tests, and he regressed.  They said that he really did not know these things in the first place because he couldn’t generalize his knowledge in the classroom.  The truth was, he was “sandbagging” them.  He generalized with us and others all the time.  He was allowed to misbehave so often in the classroom that he showed no discipline when with them at any time, unless he was strapped to a chair during music.  Had we had the money, we would have paid the same company that the State provided us with to help Joey at home after school with both discipline and learning, to provide Joey with a shadow at school, re-directing him to proper behavior when he became unruly.

Joey is more than ready for residential care.  But again, this involves financial help from the school district and they do not provide it.

We know that whatever happens, it could always have been better.  And, it could  have been much worse if those in our care didn’t have the love and care that we give them.

Valentine’s Day Buzzkill

Valentine’s Day should be super-romantic for us.  It’s the two day running start to the anniversary of our engagement, February 16th.   (The engagement is a great story, but has nothing to do with care giving so you miss out on this blog.)

So you would think that we would spend the better part of a week on flowers, champagne, oysters and lust.  And we could.  We’re aging, not expired.

Except…

We have in our house a just-about-to-turn-19-year-old autistic kid.  If he needs us, he simply jars open the door and walks into our room.  Any time.2012-12-22_09-13-56_966

Sometimes, it is to push the “on” button on our TV because he likes the glow it casts in the hallway when he’s in bed.

Sometimes, it’s because he got up to play on the computer and it isn’t doing what he wants.

Sometimes, he wants to carry on a conversation about a movie company logo he saw in a video preview.

Sometimes, he can’t get the bottle of juice open for a midnight drink.  (He expects us to cover just about any fine motor action.)

Sometimes, it’s “clean up on aisle 5” conditions with which I won’t sicken you right now.

He can come busting in any ol’ time, and we’ve become masters at positioning sheets and blankets, and keeping bits of fast-on clothing within reach.

It’s another of those things, like helping him with his bath, that should have been a few months of inconvenience when he was a toddler.  But here it is, still with us after almost two decades.

And we should count ourselves among the lucky.  There are plenty of couples in which a healthy spouse is taking care of a seriously ill spouse, and romance isn’t even on the menu.  Here’s one wife describing the last months of caring for her husband:

“Michael’s illness was just plain hard. I’m not complaining; it could have been a thousand times worse and I know that. Yet from the day he got sick in late November until he died on April 5, he never again had even one good day. His life became throwing up in a bucket or trying to sit perfectly still so he wouldn’t throw up. My life became driving him to medical appointments in the dead of winter through rain and sleet and snow and fog and sometimes all of the above. I’ll condense the story for your reading enjoyment. Michael got worse. Life got harder. Then he died.”

 

Can’t imagine their February 14th that year.  So I guess I should cease my whining here and just keep my shirt on.  Literally.

 

Cat hair

2012-12-10_20-16-26_767 2012-12-10_20-17-20_382This is Sophia, both profile and front facial, just like a wanted poster.

Melissa gave her a nice brushing tonight.  Sophia’s technically a “short hair,” but after an extended brushing effort, Melissa had created several cats’ worth of hair.

Don’t know what it is about this cat, but she manages to produce endless hair, no matter how much we brush.

As such, Sophia is a purrfect symbol of care giving.  Constant effort, repetitive actions, lots of mess, sketchy results.

Also warm, cuddly affection and amusing habits.

On dealing with insults and hurts

Almost every care giver has stories of thoughtless words, lack of appreciation, unfair criticisms and other such cuts that leave scars on our souls.

I’m going to share something with you that’s helped me rub some soothing balm on those kinds of wounds. It is one of those “there’s two kinds of people” ideas.

It comes from the Bible, but don’t run away if you’re not a Christian. There might be insight into the human animal that is helpful to you, and I’m going to keep this post at that level for you.

A guy wrote a letter to a friend, and said, “There’s two kinds of people,”

“Alexander the coppersmith did me great harm; the Lord will repay him according to his deeds. Beware of him yourself, for he strongly opposed our message.”

The first kind are genuinely malicious people. The mean people, about whom the bumper sticker says “they suck.” There are people who, for any number of reasons, need to tear down other people.

Get away from them. Notice all the ways that our ancient letter writin’ guy distances himself from someone who did him “great harm,”

  • He doesn’t go after him to get even; he leaves justice up to his God
  • He states the facts about the mean behavior and leaves it at that; he doesn’t sit around stewing about motives
  • He’s open and honest about the guy’s behavior, warning others not to get caught up in it and creating social distance from the jerk
  • He doesn’t blame himself (care givers are prone to do that)

When you are dealing with that small, toxic group of manifestly mean people, put every kind of distance you can between yourself and them.  Physical space, emotional space, spiritual space – just get away from them.

Granted, sometimes the person in your care can be the mean one.  You can’t make the physical space (e.g. abandon them – you’re better than that!), so you have to work on emotional and spiritual boundaries.

But like I said, “there’s two kinds of people.”

Most of the folks who hurt us are not mean people.  They are that group of family, friends and others in our lives who screw up.  They don’t mean to hurt us, but sometimes they do.

Our letter writer tells us about them, too,

“At my first defense no one came to stand by me, but all deserted me. May it not be charged against them!”

His friends bailed on him when he was in a tough spot.  But he realizes that they are just friends who screwed up.  Totally human.  People just like him, he tells us in other letters he wrote.  So he advises,

  • If you are a praying person, ask God to overlook their screw up
  • Keep in mind that they are on your side, even if their efforts aren’t tip-top.
  • Maintain relationship with them.  Don’t create unnecessary distance from them.
  • Keep caring about their well being

If you are following Jesus, you learn that sorting out and dealing with these two types of hurting people (as well as our hurting selves) is a primary way to become more like him.

If Jesus is not your way, my hope is that something in this post will shine some light on the path you’re walking.

The workplace speaks

Tim here. I’m processing a bit of workplace criticism I took this week. It was one of those conversations where a friend brought up things “that people are saying.” Some of it was fine – disagreement about some workplace decisions. Stuff like that’s always cool for discussion and debate, although it’s not good communication to send it anonymously by a third party.

But then there were the sweeping critiques of me as an individual, including “putting too much time into the wrong things, and not enough into (the job).”

“The wrong things” is pretty clearly code for family care giving needs.

I’m not going to say much right now. Like I said, I’m processing, intellectually and emotionally. Holding a couple of jobs and care giving at home generally means that nobody gets 100% of what they want from me. I’ve owned that, in all venues, any number of times. And frankly, by most measures, the work I’m pulling off under less than ideal conditions is pretty darn good.

I’m sure I can’t be the first care giver to get grief for care giving. Anybody else catch this stuff in the workplace? How did you choose to deal with it?