I’m a little teapot…

Melissa and I just bought  this whistling teapot:


Her social media comment says it all.

The autistic kid moves, the tea kettle whistles after 22 years

We’ve chronicled some of the sensory issues that bedeviled Joey and through him the whole family.  We had to banish whistling teapots from our home for 22 years because the sound distressed him to the point of meltdown.

Hey, it wasn’t all bad.  I mean, I had plenty of opportunities to avoid cleaning the house because the sound of a vacuum put him over the edge.

But the little blue teapot is another sign of our lives being liberated from the concessions, adaptations and drudgeries of care giving.

Hang in there, wherever you are on the care giving journey.  I’ve been slogging through the Biblical Prophet Ezekiel.  The first 39 chapters are a gloomy tale of people living in exile, familiar life erased.

Then one day life starts to come back together.

Waiting for the other one to drop.

I went over to our son’s group home to pick him up for an overnight here.  Nice evening, got his hair cut, had lots of pizza with friends, the good things in life.

But the big news is what happened when I picked him up.  A staff person at the house said, “Joey, your dad’s here.  Get ready to go.”

Lo and behold, Joey went into his room and came out a moment later HAVING PUT ON HIS OWN SHOES.


Yeah, those black ones on the top of the pile!  They were on his feet!  All by themselves or something!

That’s something we weren’t able to get him to do for 23 years, and in just a few weeks of living with a bit of independence (and housemates who won’t be manipulated into doing it all for him) he can “shoe” himself.

And that’s not all.  He’s using pronouns and grammar more appropriately.

Most of all, he’s smiling a whole lot on these visits.  He’s not disoriented by changes in routine like he used to be.

Next week’s his 24th birthday.  Looking forward to having him over for a celebration.

Death and that other stuff

So yesterday I did my taxes.  Well, I compiled all the stuff so a tax pro could do tax pro voodoo with it.

Screenshot 2018-02-09 03.54.10

Screen grab from my personal Facebook page.

Tax time gives me mixed feelings.

Yes, it’s a pain with our over-complicated system, built for those with the means to manipulate and a money vacuum stuck in the pockets of working people.  So I grumble.

But because all kinds of people all over the place pay taxes, there are various programs that make life gentler for our son with autism, and that ease our burdens as caregivers.  So I give thanks.

But more than all of this is the fact that I had to download and print a number of documents.  THIS is where I felt the impact of decades as a caregiver.

See, our son likes to grab pieces of paper, crumble them up and wave them in moments of self-stimulation.  As a result we used to keep all of our bills and documents secure, and we never, ever, ever left paper in the exposed printer feed tray.

So yesterday, after printing the 1095 and the mortgage interest thingy and such, I took all the paper out of the feed tray and hid it in a file cabinet.  Even though our son doesn’t live here anymore.  

Care giving.  A gift that keeps giving.  With all the certainty of death and… and… what was I talking about?

Cue the Music

One of our autistic son’s pleasures is music.

He’s done well in music therapy, even showing some potential on drums.

He’s eclectic in his tastes.  He likes Disney movies for their music; he enjoys soundtracks by Rodgers and Hammerstein; and now and then he gets hooked on a popular song and tracks it down on YouTube to play over and over.

Now that he’s in his own residence, reminders of his likes and quirks sneak up on me as pleasures rather than form a constant din.  That happened quickly.  We’ve been less than a month with him living elsewhere.

This frosty morning, too early, I hopped in the car to go to work and punched on the car radio.  This was playing:

I don’t know why our son took a liking to this song years ago, but it’s one he circles around to every few months.

I started laughing and got a bit misty eyed on the short drive to work.  The song had me thinking fond thoughts and offering little prayers for our son.

We have him over once a week.  It’s not a long distance relationship.  But tender thoughts move in quickly to drive out the anxious energy that care giving required and sustained over decades.

I’m liking this aspect of the change.

One week at HIS house

Our son just accomplished his first week in a staffed group home.

He’s here at home our place (yes, we’re trying to call the new house HIS home) to spend the night.  This afternoon and evening will include a haircut by his fave stylist and a pizza party with her family.

The week was a case of “no news is good news” since not hearing from the staff meant no problems.

20171208_135432When I went to pick him up at HIS HOUSE (I must keep practicing this) he was comfortable in HIS greenish recliner ($50 at a used hotel furniture place).  I simply told him that we were going to mom-and-dad’s house for a haircut and pizza with his stylist and her kids.

He came along just fine – although he was a bit confused by my car sitting in HIS driveway.  He turned toward the garage to look for the house van.  He’s already into all of the routines of HIS NEW HOUSE.

Once at our place, he got in a hug from mom.  He was a bit miffed that the Christmas tree is down, but that didn’t last long.

Now he’s taking a short nap in his old bed (with a cushy new blanket he got for Christmas.  Friends provided a second cushy new blanket for HIS house and it even goes with HIS drapes.

This is going well.

Of course there’s the trite line from the old Westerns, It’s quiet.  TOO quiet.

Empty Nest Weekend #1

Our son with autism spent his first weekend in his new group home.

It was a flurry of activity for mom and dad; writing rent and utility checks, buying furniture (hint – if you have a used hotel furniture place in town, you can save a ton), hanging curtains, buying extra clothes and toiletries…

Joey bed frame LOL

This sign on the bed frame box made me laugh.  It is the mockery of all of our precise planning.  You just KNOW it can’t be true.

Still, the reports back from the staff were more than encouraging.

Joey slept well in the new room.  That’s big.  One reason we’ve been unable to travel much with him is that he can’t sleep in strange places.  He gets up and wanders all night, then inflicts all of the consequences of sleep deprivation on us the next day.

Joey room Thurman

It helped that he’d been to this place on a past respite weekend and that we brought in some familiar furnishings from our house, such as his own blankets, the desk for his laptop, his rolling office chair and the cross you can spot in the middle of this picture –>



Joey chose to socialize rather than isolate.  Even with his computer and a VCR available in his room, he hung out in common areas with the other guys.  That news did our hearts good.  He’s going to have a community there.  He’s not feeling lost.

Of course we spent our first night as empty nesters fretting and pacing and crying.

Nah, actually, we went out for sushi.  And a Sake Bomb.  Proud to say I downed mine faster than a young husband and wife competing with me down the bar.

Caregiving.  It makes you hardcore.

Joey post move Sake Bomb


No trick! This is a treat…

Governor Dennis Daugaard of South Dakota officially proclaimed November as Family Caregivers Month!  Give his official Proclamation a read – that’s you lurking somewhere in the statistics and words of praise.  1

Flashing before my eyes

Not my life, but my son’s life.  That’s what flashing before my eyes.

Today we have the meeting to set up his move to a group home.  All of the staff will be there, both the folks from his day program and from the house where he will live.

It’s a positive thing, of course, something for which we’ve (my wife and I) waited for a long time.

I can’t speak for her feelings, and I can only guess at our son’s, so I’ll shift to first person here.

I realize that my role in my son’s life is not over, but much of what I can do and shape is.  I’ve formed what I can in his life, second guessed myself to the point of agony, been critiqued and judged plenty from without, as well as encouraged and supported at precious points along the way.

I can look back on…


JOEY Yucaipa


…who Joey was…



Daves mom and joe



…who he’s become…







…and ponder who he’ll be.





Something of me travels with him, of course.  And I pray that it is whatever is true, whatever is honourable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable (Philippians 4:8).  God knows and every day reminds me that there’s plenty of me that needs to be ignored and forgotten, and I can only pray that little of that drags along with Joey.

So a new leg of the journey commences, over territory we’ve not been and over which we’ll have ever diminishing control.  But ain’t that life.

An old priest I knew always included a warning in his message at the baptism of a child.  You (parents) know that you’re handing your child over to God now.  You’re no longer in charge of the outcomes.

As my life flashes before my eyes, and Joey’s plays across my imagination, I’ll trust that warning, and know that all of our lives are in the hands of the One who’s cared for us beyond all deserving.

 They will declare,  “The Lord is just!  He is my rock!  There is no evil in him!”  (Psalm 92:15, NLT)

It’s on

Here’s the latest on our 23 year old son with autism’s transition to a group residence:

Yes, we have a pre-move team meeting next week and a move in date of November 1, per this message from the Case Manager,

Hello Team,

Joey and I would like to invite you to his ISP Pre-move meeting.

Date: Friday, September 22nd, 2017
Time: 3:30pm
Location: XXXXX Conference Room 3

The purpose of this meeting is to discuss supports Joey will need during his transition to the XXXXX house.

Melissa (mom) is working with Joey on feeling more comfortable with his new computer, which will move with him. He hates change so this was a heck of a time for his old desktop to go kaput.

His most recent antic was to unplug the new laptop, take it off the desk and plop it by its purchase box to say, “Send it back.”

Melissa coached him on being more at home with it, and they had a good discussion one recent morning before his bus arrived and a good hands on lesson last night.

I’m off today and we are planning to go to a sports bar that Joey likes because it is roomy and has great burgers.

Which gave Melissa leverage when he didn’t want his computer lesson. All she had to say was “Working for cheeseburgers.” He complied.

It’s on. The computer is on. The move is on.

Meanwhile the dog did some neurotic paw gnawing last night, opened a wound, and thus cancelled her scheduled bath and grooming.

That’s care giving. Deal with one issue, and the next one comes up from somewhere, somehow.

What’s left

We are almost sitcom laugh track worth ’round here today.

Joey, our 23 year old with autism, has a nasty cough and is home in a NyQuil haze.  He’s intoning Disney movie lines in a voice that sounds like the audio of a slow motion replay.

Melissa (mom/caregiver) is suffering from a double shot – one shot of staying up all night to care for Joey and the other a shot of recurring pain from a chronic illness.  She’s closed her eyes for a few minutes (btw I think she’s pretty when she sleeps but that’s just editorializing and so I’ll move on).

Tyrion Aftermath-of-the-attack

Tyrion Lannister visits our living room today.  From here.

I (Tim – dad/caregiver) am sittin’ here typing this while my eyes keep closing and head drops on the verge of sleep.  I have the day off but I’m sleep deprived from some kind of phantom leg pain (possible arthritis although disc problem is another one the doctor threw in to consider).

We are all beat up in one way or another, but not by one another.  If anything, there’s a tenderness in the house that is surprising given how cranky pain can make any one of us.

When all else fails (and hey, what doesn’t when you’re a caregiver?), your kindness remains a gift to those in your care.  On days when all of you are hurting, you find out that everyone in the household is a care giver and a recipient of care at the same time.

Letting another’s head rest on your shoulder is a successful intervention, “How are you?” is deep communication and “Sit down, I’ll get that for you” is heroic service.

Sometimes what’s left is you, and you’re plenty.

I sent a prayer request to a friend in the midst of our family sick day, and what he sent back says it pretty well,

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:3-5)