Just who’s running these holiday traditions?

So when Joey and his brother Tim were little, we set up a back yard Easter egg hunt.

2013, our older son and his fiancee's family rocked some Easter eggs!

2013, our older son and his fiancee’s family rocked some Easter eggs!

Tim put dutiful effort into finding the plastic, candy filled eggs.

Joey?  He took autistic delight in finding just one egg, and throwing it to the ground repeatedly because he liked the sound.

Care giving requires a sense of humor, because those in our care can take over events very quickly.

Some things you would like to do just aren’t gonna fly; some things you try go in unexpected directions.

We will be coloring real eggs on Easter Sunday, while Joey watches movies.  Don’t know that he would get a kick out of throwing eggs these days, but we’re not taking any chances.

Whatever your traditions might be, we wish you all the best as you celebrate.

Gifts

2013-02-25_17-55-00_932

This was a “target of opportunity” picture on our autistic son’s 19th birthday. (I think if you click on the pic the #19 candles will be visible in the background). No, we didn’t serve him wine, but we had some of his favorite people over for a light dinner party and they brought some gifts that the rest of us could enjoy.

Couldn’t help but notice the bread loaf and bottle of wine right next to each other on the counter.

Today is an important Christian holy day, “Maundy Thursday.” (Yes, every Christian child who encounters this makes a face and asks, “How can it be Monday Thursday?”) It commemorates the night that Jesus sat at dinner with his friends and shared bread and wine with them. “Maundy” comes from the word “mandate,” as he commanded his disciples to

  • share bread and wine on a regular basis, in remembrance of him
  • love one another, as he loved them.

Even if you’re not a Christian, the “Last Supper” can be an evocative scene for care givers.

  • Jesus shares the meal knowing that his execution is at hand.  Instead of a traditional “last meal,” in which the condemned person gets to indulge in favorite foods, Jesus focuses on feeding those about whom he cares: “This is my body, given for you…”  Care givers must find strength to give in every way – emotionally, materially, by constant efforts – even when the gifts are not being reciprocated.  It is an intense inner battle, and the Last Supper can help us understand its depth and value.
  • At the meal, Jesus, the assumed teacher and leader of the group, makes a point of serving them in a humble, even demeaning way, by washing their feet.  Until we became long term care givers to our son, this was a “nice” religious story about being kind to others.  Taking care of Joey (and of each other) reveals the deeper nature of care giving.  You have to set aside a lot of assumed entitlements as a parent, spouse or whatever you are, and just get down and do the dirty work for those in your care.

Jesus’ language throughout the Last Supper is loaded with the gift of care giving, both his intense care for those around him and his desire that they take up and share the gift:

When he had washed their feet and put on his outer garments and resumed his place, he said to them, “Do you understand what I have done to you? You call me Teacher and Lord, and you are right, for so I am. If I then, your Lord and Teacher, have washed your feet, you also ought to wash one another’s feet. For I have given you an example, that you also should do just as I have done to you. (John 13:12-15, ESV)

 And he took a cup, and when he had given thanks he said,“Take this, and divide it among yourselves. For I tell you that from now on I will not drink of the fruit of the vine until the kingdom of God comes.” And he took bread, and when he had given thanks, he broke it and gave it to them, saying, “This is my body, which is given for you. Do this in remembrance of me.” (Luke 22:16-19, ESV)

The Last Supper is an event worth studying, even if one is not convinced of the Christian message.  Jesus gives an opportunity to glimpse care giving as a great gift at the heart of reality, not glamorized but in the midst of adversity and pain.  It is an affirmation and inspiration that all care givers need.

Red

Gonna pull in some religious symbols today.  Stay with me – it isn’t a sermon.

Many folks around the globe are observing Holy Week, the most significant part of the Christian worship year.

In churches that employ seasonal colors, Holy Week sports a lot of red.

  • It stands for passion, just like the Valentine’s Day heart.  Obviously, the religious connotation is much more than romantic.  For care givers, it is worth reflecting on our commitment to those in our care, the passion that might seem scarce some days but that keeps us steady in giving to their needs.
  • It stands for sacrifice, as it is the color of blood.  We have to draw on something more than familiar affection and reciprocity to be care givers – we have to give when it isn’t recognized or rewarded.
  • It stands for fire, a sign of powerful transformation.  The fire of inspiration, or the fire of refining to burn away impurities until only the most precious stuff remains.  Care giving can burn away some of our established ways of thinking, feeling and acting, replacing them with a whole new approach to living.

For Christians, the week proclaims the passionate commitment of Jesus to his mission, which is to sacrifice himself in love for the life of the world, so that those who receive him can be transformed for new and eternal life.

You can ponder that and, even if you don’t buy it, think about the ways in which his example might refresh and inspire you.  Entertain the idea that your commitment to care giving is a sacred passion, a holy offering and a source of new life.

And if you already believe those things, take a deep breath and give thanks for who you are in the cosmic scheme of things.

Care giving is what you do when you have other plans

This is a happy report for the most part.  Friday night, our autistic guy had an overnight in a respite apartment provided by his community program.

It was at a group home where two guys he knows are residents.  So that was a plus.

When I picked him up on Saturday, he was very smiley.  The staff and residents all said it was a good stay and they would love to have him back.  They went out to a movie on Saturday afternoon and he ate his weight in popcorn.

Now, part of the hidden agenda of these respite nights is for Melissa and I to have dates.  Most of our dates are lunches, because we can’t go out in the evenings with Joey home.  We had a big Friday night planned, at a highly regarded Brazilian Grill that has only dinner service – a place we’ve not been able to go.

So what happened?  Well, first and foremost, Joey had a great night, for which we are very thankful.  And

  • Tim got sick.  Tim never gets sick.  But Melissa had to take care of Tim on Friday night.
  • Melissa got sick.  Not with Tim’s bug, but she was down and out on Saturday while Tim was only marginally better.  So we got to take care of each other.

But that’s the care giving life.  Plans get blown up often.  But then rewards come from something other than what you hoped to enjoy – in our case we enjoyed some quiet (if sickly) time together and most of all Joey’s success and happiness at his overnight.

Still gotta get to that Brazilian Grill, though.

Signs

Here in Sioux Falls, South Dakota, the first day of spring arrived with single digit temps and enough wind to make it a subzero morning.
But even with winter trying to hang on, some plucky prophets of spring showed up.

Robins are landing around town.

Cardinals are whistling for territory and mates.

Our maple tree is hinting at leaf buds.

Care givers live on signs. In life seasons that seem long and gray, we notice

· new facial expressions

· new words

· new skills, now matter how modest or underdeveloped

· new gestures, now matter how simple

· new responses to continuing situations

· new likes and dislikes

· new expressions of affection

Those are a few that come to mind.

What are the signs that inspire you? What brings a hint of warmth and new life into your day?

Balancing the scales

Today’s first text (Melissa -> Tim):

Did something happen this morning? Joey almost didn’t get on the bus. Hope they get there OK.

Second text of the day (Melissa -> Tim):

He was really angry.

Every so often we bump into one of those studies that say, “You have to pay X number of compliments to outweigh one negative comment.” Don’t know how much real science goes into those, but we can see some common sense application in the realm of care giving.

Care giving creates so many emergencies, almost emergencies, might-be-emergencies, remember-that-last-emergencies, etc. that a negative tone can pervade even a decent day. It’s a balance issue. The negative news outweighs the positive.

Yeah, OK it should be one of these hanging scales of justice to really make sense.  Nobody has those.  So here's a postal scale.  Deal with it.

Yeah, OK it should be one of those hanging scales of justice to really make sense. Nobody has those. So here’s a postal scale. Deal with it.

Any of you have some practical ways to balance the scales?

The Lutherans who rule the Northern Plains have a fun program called Stepping Stones. We (borrowed/stole/whatever churches do with other churches’ stuff) the program and really like some of the family prayer practices suggested, especially taking time each night to share the “highs and lows” of the day. “Lows” tend to cling in our minds, so there’s a good practical point to identifying and dwelling on “highs.” We let them go too easily unless we make up our minds to hold and celebrate them.

When we met, one of Melissa’s disciplines was to think of five things for which to be thankful at the end of each day. That’s another good scale balancer.

So, others? How can we counter balance all the “bad news” that a typical day of care giving can create?

OK, You Asked For It!

A few of you asked me to post how Joey learned a certain skill, so here it is!

Last Thursday, my husband posted an old ketchup TV commercial to demonstrate “anticipation” and how we are sometimes able to tell our son what will be happening later in the day or even in the week, to help him be calmer and less surprised by events that are not on his regular schedule.

I commented that it was nice when, finally, last week, he was able to tell me that he had to vomit, instead of simply doing so in his bed or all over a piece of furniture and/or his clothing. Someone said “I’d like to see how you write that article!” So, OK, you asked for it! (Please do not run away now! This is just beginning to be funny!)

Once, Joey was stricken with the stomach flu and I saw him begin to become sick, I guided him to the restroom. I had him sit by the commode and I sat next to him. I then acted out the process of being sick, using words such as “blaggggh” and gyrating my head over the commode. I exaggerated all of the things people do when vomiting.

As sick as he was, Joey laughed hard and the laughter continued for several minutes. Although he was physically miserable and did not use the skill of running to the bathroom during that time of illness, he still remembered Mommy’s “act.”

Last Thursday, he was stricken again. We were sitting in the living room, awaiting transportation for his day program when I noticed his eyes were red and partly closed and he was rather still and quiet. I asked him if something hurt. He said, “Yes.” I said “Point to where it hurts.” He pointed to his torso area. I pointed to his head and asked, “Does it hurt here?” He said yes.”

My first impression was the stomach flu.

This impression was confirmed when he said, “I have to go BLAAAAAAAAH, YEACCCCCCH.”

A lesson well-learned. Was that funny to anyone else, or did you just have to be there?

In either case, I will always remember this as a huge triumph for us!

P.S. I think this might be very useful for typical kids as well. They would do well to be reminded that, rather than coming to us to say “Mom/Dad, I think I’m gonna be sick”, to simply make a bee-line for the commode. Or a lined trash can. 😉

Autistic anticipation

2013-03-11_19-27-58_197One of our son Joey’s great breakthroughs was gaining the ability to look ahead – to anticipate future changes to his daily patterns.2013-03-11_19-27-58_197.

We didn’t do anything special to make that happen. We were resigned to the idea that anything we did that changed his daily routine was going to get us beaten up or our property broken, because he couldn’t anticipate and simply reacted at the moment of change.

But one day, I can’t say I remember exactly when or all of the circumstances, we were trying to tell Joey about something that was coming up, and his brow furrowed and we could see the processing wheels turning. He got it.

Yes, he got it years after a typical kid would show the same skill, but he finally got anticipation. It was one of those blessings that most folks take for granted but for us felt like finding a million dollars.

His ability to anticipate has up- and downsides. Positively, he can be simultaneously motivated and patient. He’ll sit calmly by the door for hours if we tell him, “Later we will go to the hamburger restaurant.”

On the negative end, he can whine and protest for hours if the future holds something he’d rather not do. “After dinner you will have a bath” used to unleash a s**tstorm, although since puberty set in he’s been asking for baths. “After school we will go to the doctor” gets resistance, unless he’s sick and then he asks for the doctor by name.

Pictures have been a huge help in preparing him for the future. When he graduated from one school to the next, part of the transition was a field trip to the new campus, followed up with a supply of pictures of the new buildings, classroom and staff. Big changes like that are hard on Joey, but the schools have employed pictures and other methods to make his transitions gentler.

When it came time for him to leave the school setting and enter his community adult program, Melissa convinced the school district to send him for several weeks of half-days in the new program. We preceded this with a tour of the community facilities, pictures of the staff, and lots of calm verbal reminders. “Soon you will go to school in the morning, then to ‘work’ after lunch.” He gave us lots of brow furrowing, some emphatic “NO”s and episodes of physical tension – but the transition worked.

Right now, we are sending him off on his first overnights. The community program has respite nights available in group homes of the type that Joey will move into as an adult. He’s had one such night – he didn’t really know what was coming and he was grumpy with us after (although he was fine with the staff at the apartment… go figure.)

Now, he knows what’s up when we show him the picture of an apartment house and say, “You will be going to this house for dinner and to watch movies.” We’ll see how this goes – the next attempt is next week. Prayers and encouragement are appreciated as we anticipate with Joey.

Guess I have to end with something cheesy about “anticipation,” although you need to know that these perky little TV buggers are totally not autistic:

Care giving won’t give you rock hard abs…

But you can have a concrete back. Which is better than back hair, I think.

I (Tim) went to physical therapy today. I was referred because the ortho-sports clinic couldn’t figure out why I wake up with searing pain between my shoulder blades.

The therapist tried to manipulate the upper spine, and couldn’t get any play out of it at all. “Wow, your muscles are like concrete up there.” Seems like it should be a turn on to have a woman say that, but her intonation didn’t make it sound all that good.

She agreed with my suspicion that this is accumulated stress manifesting in physical problems.

I got some nice electro-stimulation, heat and a bit of an upper back rub out of it. Felt good, certainly. Also, some stretches to do at home.

The evening featured a birthday party with some friends who are raising seven (yeah, 7) kids. The second oldest (19) and youngest (3) celebrate on the same day. It was a blast – even our autistic son was giggling at times. Good medicine.

2013-03-11_19-27-01_223The Sloppy Joes, chips ‘n’ dips, soda, cake and ice cream won’t help with rock hard abs, either. But the sweet people and good time go a long way to relieving concrete back.

Home is where the shark is

OK, I (Tim) am gonna whine. If you don’t like whining, and you’re one of those people who can just summon up a motivational quote, do some deep breathing, put on a happy face, etc., go do your thing while I whine. There’s some humor of a sort down below if you want to skip to that.

I hate the spring time change. I just adjusted all the clocks an hour ahead. I’m sure there’s some great social good to this somewhere, but it’s just another bit of sleep deprivation to me.

I’m whiny because I’m sleep deprived and “home deprived.” I work long hours and get home to a good share of household work. After that, I desire some rest. I want to enjoy some space and let my mind float a bit. But “situations” come with care giving, and the last few nights have been full of them. No privacy, no mental rest, reduced sleep and added stress.

Among the frequent bits of advice given to care givers are “Take care of yourself, reduce stress, do some things for you.” But those are exactly the things that care giving compromises. It’s been acute for me in recent weeks, so I’m whining.

Had a day off of sorts today. Got a wee bit of extra sleep, although now I’m setting the clocks ahead to give an hour back. Got to watch the better part of a movie on TV. But I didn’t get to the gym as planned, or read some stuff I wanted to read, or work on a book I have a contract to write.

So sometimes I annoy those around me by creating meaningless mental space. It is the only way I can go on automatic pilot and cut down the applied thinking and stress of too many demands.

A14148_009AOne way I achieve this is to pull out a diminutive glow-in-the-dark toy shark. Long story about his origins; enough to say that I got a few laughs out of humming the Jaws theme while poking Melissa with the shark early on in our married life.

So I pull out my pal Sharkey, or just put my thumb and index finger together if he isn’t handy, hum the music and poke Melissa. Or threaten to. Or make a face every time a word that rhymes with shark comes up – “I’m taking the dog to the park, wink, wink. Or give her the look any time the ocean shows up on TV, even in a commercial.

It is to the point where she’s more annoyed than amused. But I find it hard to go cold turk… I mean… cold Sharkey. Sharkey creates meaningless mental space in which I can just rest. I don’t need a “man cave,” just a shark bite.