Paper Trail

Melissa is reclaiming a room of the house to turn into a man cave for Tim.  Well, more of a study really since Tim lost his man card ages ago.

Anyway, this is an empty nest dividend, a chance to use space that was ignored or allowed to be thrashed during the long years of care giving.  To friggin’ enjoy parts of our house in non-care-giving ways.

20180421_180524Today we cleared out two broken down file cabinets.  They will be hauled away but oh what they held.

Well, frankly, most of it was trash.  Sure, important trash that will need to be shredded.  But stuff no longer needed.

Years of mortgage and refi paperwork from trying to strike deals to make ends meet without upending our son’s life.

All kinds of medical insurance stuff as the pursuit of more income, better coverage or simply more time to meet care giving demands worked itself out in an array of job changes and second jobs.

And of course tons of educational and social service type stuff that life with autism generates.  IEP “invitations” and outcomes that seemed like the be-all-and-end-all of life at the time.  Report cards.  Respite care accounting forms.  Our son’s participation in a University of California search for autism causes in the environment (no, they didn’t find one).  All of those pull-off-the-ends-and-lift-the-sticky Social Security Administration forms.


Not even the tip of this iceberg.

There were a few important things to retain, but by and large the paper trail of our care giving life is heading to the garage in reinforced bags to be handed over to a shredding service.

Then there were some sentimental rescues.  Pictures of Joey, class photos from various schools, notes from teachers and others who helped Joey and our whole family over the years.

Those we boxed for various destinations – some for a shinier new file cabinet to come, of course – but others for a scrapbook for Joey.  He delights in looking at pictures of past friends, teachers, neighbors and classmates.  Will be a joy to bring a collection to grace his new home.

20180421_180647.jpgAnd you can bet that some paper will just live here with us, in wallets and purses, in drawers where we can bump into a memory in the course of daily routines, maybe in albums for us.

I mean, who else will  reminisce and smile and maybe shed a sweet tear over a picture of Joey turning his back on the camera… and on Santa?

Man Card played; Man Card lost

Tonight I have to surrender my Man Card.  I’m crying on and off.

Yes, it’s anticipation of our younger son moving into the special needs group home tomorrow and not being around here.

Yes, it’s relief after a couple of decades of care giving.

Yes, it’s just all kinds of pent up, ignored, overdue and otherwise not well processed feelings.

Started the day in a manly way.  My older son and I went to the local gun shop and looked at manly guns.

We went on the manly range and I rented a reasonably manly piece and shot some almost manly groupings on my targets.

We went to a manly brasserie and had manly fare including manly beer (fourth one from the top scrolling down).

Now I’m sitting around crying on and off.

I leave this here and sign off:






OK, OK the flaming is annoying me, too.  Enough.

I try to avoid posts on “How to Be a Great Caregiver” but I hope a few insights from my day are useful to someone out there.  What to do with that free floating anger?

  • Count to 10 and then multiply.  Deep breathing, slow counting, something, anything to help your mind regain perspective over your overwrought system.  A good therapist taught me to see negative emotions as waves – they are strong and scary but they peak and subside pretty fast.
  • It sounds cheesy but “accept that it’s just a feeling.”  Most caregivers get overworked and some nasty feelings tends to hang around.  Tell yourself something boring and objective like, “OK, I’m in a bad mood” and get on with the day.
  • Do something you enjoy.  If you’re an introvert, you need to assert a claim to some private time so you can read, ponder or whatever.  If you’re an extrovert, you need to be with others whose energy refreshes you.  NOTE:  I don’t mean have a booty call or affair.  Think about it, please.  If you are overwhelmed by the needs of someone in your care, do you really need to open another potentially insane, needy relationship?  Plus it’s just plain wrong.
  • Pray, if you are a person of faith.  Learn to pray in ways that aren’t just supplications for God to fix this or that, but are times to focus upon and enjoy the greatness and goodness of God.  I started my morning prayers ANGRY and finished someplace near sane.
  • People without a faith orientation might describe the above as “getting out of yourself.”  So go outside, gaze on a breathtaking feature of the landscape, engage in an absorbing activity (somewhere you can’t be interrupted!!!!!), do strenuous physical work or some other something that doesn’t let you stew on you.

Hope this helps.  Blessings on what’s left of your weekend and on the week to come, my brothers and sisters.  Now I gotta go Google “Red Letter Day.”  No idea what that is.


“Buckets?” he asked.  “Yeah, buckets,”  I answered.

I haven’t cried like that in so long that I didn’t know until then that my right eye doesn’t produce tears.  It is difficult to say much about this movie, called Ocean Heaven, except that my friend was spot-on, I cried buckets.

How do you recommend a movie, made in China, starring Jet Li, the martial arts movie star, subtitles and all, with more enthusiasm than some have shown for Gone With the Wind or Titanic?  Easily, and in my case, more so.

I cannot think of a movie that has moved me more than this.  It was better the second time, when I watched it with my husband, even though I knew how it would end.

All I can add is that this movie looks at the perspectives of both the autistic person and the struggles of the caregiver with compassion that I have never seen in any movie or documentary.

Goldilocks Syndrome

Some cute bears just because bears are in the story.  Irrelevant, really.

Some cute bears just because bears are in the story. Irrelevant, really.

I’m assuming that you all know the story of Goldilocks and the three bears. If not go read it here before it gets banned or something.

Anyway, the key is that the little home invader keeps trying stuff out in the bears’ house – food, furniture, whatever – and goes through a “too much, too little, just right” dialectic each time.

Coming to the help of caregivers is similar. You can come on too strong and amp up our anxiety, or you can stand back and make us angry because you just don’t seem to care. Finding “just right” is not easy.

We wish there were a magic something something that would make our situation all better. So why wouldn’t you be tempted to come on too strong and try to fix our world from top to bottom?

At the same time, our situations overwhelm us and we want to escape. So why would you want to wade in at all?

Caregivers (especially the lame kind that blog) complain about this stuff all the time. “I can’t believe the way grandma walked in here like everything I do is wrong and she’s gonna fix our kid.” Or, “I’ve been going to that church for twenty years, and not a single person’s offered to help me with this mess.”

A care giver in another city had a bunch of church people show up at her house without warning, packing all kinds of cleaning supplies. And clean up they did – not just the house but what little remains of calm and sanity she had that day. It was embarrassing for her and stressful for her family. Other help might have been welcome, but the church folk did what they thought was important rather than ask what the family might need.

The flip side (anybody know what a flip side is anymore?) is in this Facebook comment from another care giving friend,

All we got from our parish was ignored.

Our church recently tried something that we hope will be “just right.” We identified people we knew to be family caregivers. There were lots when we pulled out the parish list and gave it some attention. Some of it is the normal course of aging and one spouse needing to do more for the other. Other families have a loved one with chronic or terminal illness. There are grandparents caring for grandkids, and kids caring for parents. And there are the special needs families like our own.

We sent a personal note to each, expressing our respect for their efforts. We included a care giver resource sheet from a local community center, and this Bible verse,

God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them. (Hebrews 6:10, New International Version)

IMG_20150703_115452_701Before the letters went out, they were placed on our church altar and the care givers and those in their care were prayed for by name.

Our hope is that these letters will land in the “just right” place. For those who value privacy and self-sufficiency, we hope to communicate a bit of recognition and encouragement. For those who might want more, we hope the letter is an invitation to ask for help on their terms.

To take it down a few notches and give some workaday examples, it is like dealing with customers in retail. You can put them off by hard sell, and you can put them off by ignoring them. Same with visitors to a church – they don’t want to be pounced upon and they don’t want to stand in a corner while everybody else gabs and swills all the coffee after the service.

If you know a care giver, try to find a “just right” overture. Don’t try to barge in and fix everything, but don’t stand aloof.

And if you are a care giver, don’t make others guess. They are just as intimidated by your situation as you are, but you’ll find they can be very loving and helpful if you’ll give them a bit of guidance.

Need New Underwear

That’s what Joey had to say this morning.

It’s not “Happy Father’s Day” but I’ll take what I can get.

JOEY YucaipaOn the other hand, Melissa posted a greeting on his behalf with a couple of cute pics, including his much loved baby face. When it was fine to get him new underwear. 21 years ago.

cat brushingOh well, at least the cat came out and nagged me into her morning brushing.

From all of us, a Happy Father’s Day to all dads. Double that for the caregivin’ dads out there.

Sometimes it’s substance, not symptom.

IMG_20150608_151518_420 So this fellow is Scottie.

We are at the reception following his grandfather’s funeral.

Yes, Scottie is wearing a Pittsburgh Steelers’ Mean Joe Greene jersey.

His mom did all the right stuff in the run-up to the funeral. She explained death in terms relevant to Scottie, mainly that grandpa would not be here to visit anymore. They are a Christian family, so Scottie has eternal reference points from which to find understanding and comfort, too.

Several days ahead of the service, she prepared him for it, explaining where it would be, what would go on, and how lots of family would get together to eat and talk about why they loved grandpa. Included in the preparation was the clear understanding that Scottie would wear his suit and tie. (Note: I’ve seen him in it and he is stylin’).

But when the day came, Scottie wasn’t into the suit. He insisted on the Mean Joe Greene jersey.

Folks familiar with special needs might start to think, “Uh huh. Sensory issues. The suit is unusual and uncomfortable and he likes his jersey material better.”

But Scottie was able to articulate that the jersey was important in his relationship with his grandfather. Grandpa was from the Pittsburgh area, and Scottie used to wear the jersey to grandpa’s and root for the Steelers with him.

The jersey was Scottie’s sign of love and respect, in the same way that most of the rest of us might wear a suit or a formal dress to a funeral.

When our son was a little guy, he used to come in our room and yell “t shirt!” It took us a while to figure out that he wasn’t insisting on what he wanted to wear, but was telling me to put on a t shirt. He knew that if I was in a t shirt, I wasn’t going to work and could be home with him. It was an expression of affection.

Some of the choices made (OK, demanded) by people who live with autism and other special needs have an important, well conceived meaning. They’re not all symptoms of sensory issues or other things that need diagnosis. They’re efforts to touch our hearts, if the pathways of our very different minds can meet.

Enhanced home entertainment techniques

So we got a VCR to replace the defunct one lamented in yesterday’s post.

Joey became his happy, smiley self.  The anxiety that he shared so generously with mom and dad last night went away.

I did try to show him the control panel differences on the new contraption, but he just said, “Bye, DAAD?!?!?!?!?,” which is Joey-speak for “I’d like to tinker with this for myself.”  So we know his Y-chromosomal stuff works.

But the quiet was short lived.  No, he wasn’t in our room vocalizing distress.  Instead, he sat in his room flipping around VHS cassettes and popping them in and out of the machine, enjoying short clips from as many as he could.

The noise was about as insufferable as the nagging from the night before.

But he got his fill and he’s now sleeping in the glow of old TV through which the videos show.  I’ll go to bed if I can unwind.

That time I called the cops – on myself.

Hard memories and emotional impressions came up when I saw this video:

Our son, also a Joey, stopped having meltdowns quite awhile ago. Medication was a big part of that. We’ve eased him off of several meds over the years, but we maintain a dose for aggression control, just in case. Age mellows some of this stuff as well, at least for some kids. We think that’s true of Joey, but we’re not getting rid of the med just the same.

During one terrible explosion of his frustration, it took my wife, our older son and me to pin Joey down and calm him. We were slapped, kicked, scratched and bit in the process.

Another time, Joey lost it because a computer froze. He attacked me with a knotted rope dog toy.

There are also plenty of tales of broken property. He seemed to have a knack for destroying keepsakes when angry.

Anyway, my mind is starting to flood with these ugly memories. As I relate one, others come rushing in. I can feel my breathing change and muscles tensing as I type this. So let me just get to the one I most want to share and then I’ll stop.

A few years ago, Joey had one of his sleepless nights. He still has these, but I’ve downgraded them from menacing to just annoying. He turns on lights and sits up watching movies these days, but a few years ago he would wake up agitated and pound around the house, repeat phrases with great distress in his voice, burst into our bedroom to ask repetitive questions, beat on his chest with an open hand, clap his hands (which in the dead of night hits the ears like a rifle’s report), and generally raise hell.

Melissa and I would take turns staying up with him, although it wasn’t like the partner who stayed in bed got much sleep.

During this particular night, it was my turn to get up. I tried to calm Joey, to connect with him around the things he was saying over and over, to do something, anything, to stop the din of noise and emotion.

Somewhere in the wee hours, my focus shifted. I forgot about helping Joey. I just got angry.

Not a surprise, really. The late actor James Gandolfini advised a group of drama students that one way to prepare to play an angry character or scene is to deprive yourself of sleep. The anger will be plenty authentic when the camera rolls.

I couldn’t yell – I had enough presence of mind to avoid terrifying Melissa out of what little, ragged sleep she might have been getting.

The anger that couldn’t come out in words and volume started flooding my body. I was on the verge of my own meltdown. I perceived Joey as malevolent, as purposely tormenting me.

I was going to slug him.

I think I prayed, not out loud but deep down inside myself. By God’s grace, I went for the phone instead of after Joey. I called 911. I don’t remember what I said, except I got across that I was losing control of a situation at my house and it was heading for violence.

Two Sioux Falls Police officers showed up. I don’t remember what we said to one another. They were quiet enough that Melissa didn’t wake up. The were calm and courteous.

I sat on the couch, eventually fighting a desire to cry instead of a rage to attack. They stuck around – I don’t know how long – until they were sure that things were calm enough for them to leave. Joey finally went back to bed. I sat on the couch in the dark for a long time.

That’s the story. I don’t know why I’m moved to share it except in the hope that someone who reads it will, if in a similar situation, make the choice to call for help. To call for the spouse in the next room like in that video, or to call for first responders like I did. Don’t be ashamed. We all have limits and we all have times, great and small, where we need help.

In my distress I called upon the LORD;
to my God I cried for help.
From his temple he heard my voice,
and my cry to him reached his ears.
(Psalm 18:6 ESV)

It won’t be Father’s Day until…

“Dad will go to the airport and get Mommy.”

Joey’s been saying that since we dropped Melissa off at the airport on Thursday.

She is enjoying a precious opportunity. She has a childhood friend in another state, and the friend’s daughter was married over the weekend. I was able to take some time off, so there was a window open for Melissa to make the trip.

But Joey, while not anxious or upset, still wants Mom to get home.

Father’s Day, ideally, is about a man defined by his relationship to a woman; Mother’s Day, likewise, is at its best when it is about honoring one member of a partnership.

Partnership might be too weak a word, of course.

So God created man in his own image,
in the image of God he created him;
male and female he created them.

And God blessed them. And God said to them, “Be fruitful and multiply and fill the earth and subdue it, and have dominion over the fish of the sea and over the birds of the heavens and over every living thing that moves on the earth.” (Genesis 1:27-28 ESV)

A couple that gives and tends life. An expression of God’s care giving to the whole creation. Two wrapped up in one blessing.

So we will be taking a Father’s Day moment tonight after “Dad will go to the airport and get Mommy.” Because it’s not a complete Father’s Day without honor to Mom, or Mother’s Day without honor to Dad.