Transition

Miss me yet?

Nah, if your life is like mine, you’re up to your posterior in reptiles.  Who cares if some dork blogs about stuff when you have more stuff than you can handle?

About a month ago I wrote happily about our son’s move into a group home.  Reports from the staff continue to be positive.  Heck, last weekend Joey was selectively communicative but smiley just the same when we asked him about the group’s trip to see Disney on Ice. (Random thought: with temperatures dropping here I could probably show a Disney movie in my backyard and call it Disney on Ice.  But I digress).

For now, we have him stay at the new place Friday night through Monday morning.  He spends the “work week” here with us.

So, what’s this like, this zone between empty nest and care giving?  It’s a bit of both.  No, a lot of both.  A word that my wife taught me comes to mind: Transition.  Of course I knew that word in some contexts, but she taught me about it as applied to childbirth, 

This is the hardest phase but also the shortest

Well, let’s hope it’s short.  I mean, the last “phase” was 23 years so this should be a flash in comparison.

Here are some stray things I’m observing and processing.  Hope they might be helpful to you if you are thinking about or in the midst of this kind of transition:

  • Yes, some chores go away.  But others pop up.  He’s technically a tenant now, so I’m writing his rent, utility and activity checks.  So all of a sudden I get extra of one of my favorite tasks, bill paying.  Yep, there’s a flurry of new paperwork in my life.
  • The peace and quiet and laid back pace when he’s not here are wonderful.  All that stuff you hoped/are hoping for?  Yep.  No middle of the night interruptions.  No bathroom accidents.  No holes drilled in your head by verbal perseveration about this and that.  No structuring your day around care giving routines. Coffee tastes better, hot strangers ask you out on dates, the moon is in the seventh house…  OK, I’m exaggerating.  But this big change is a real and overdue blessing.
  • Life continues to dole out rations of crud.  All the other stuff that you were ignoring comes into focus.  Our years-past-the-average-lifespan-of-her-breed dog is having various symptoms of her advanced age.  And so we have the discussion of spending lots of bucks to keep her going or to play the bad guy and have her put down.  Yes, the new freedom is nice.  But life continues to do its thing in your face.
  • Emotions bounce around.  And I mean for all of us.  The other day Joey kept bringing up “donuts and pizza,” a sweet dad and son routine we’ve been having on Saturdays for years.  He misses it.  When he vocalized it, it went right to my heart and it frigging tugged.  No, not tugged.  Applied a wrestling finishing move.  Mom reads the emotions in Joey’s eyes.  She can see he’s struggling with the change – not that he can’t handle the routines and activities of the new place, but that he’s homesick for our place.  So is the lesson that providing a loving home will come back to break your heart?  (Man, sorry, now I sound like sappy pop “Christmas” muzak.  But I digress, again.)
  • Challenging discussions come up.  Should our response to his objections be to immerse him into the group home more aggressively or to prolong his weekended status until he stops lamenting?
  • Holidays are a mixed bag.  The house is filled with familiar decorations and activities that Joey loves.  Having him home much of the week is, we hope, reassurance that life as he knows it isn’t over.  We’re still including him in fun with people he knows and adores (and who reciprocate that affection!)  But the emotional upheaval of a big transition in these tender times adds pangs of pain.  (Dang, this does sound like childbirth).

In other news, Joey brought home some seasonal arts and crafts pieces from his day program, among them this little wreath ornament:

24831118_10214947007377117_2743786266850286762_o

It’s the only ornament on our tree right now.  We are having a bunch of friends over on an upcoming night to have pizza and other good stuff with Joey and to help us finish decorating the tree.

The green holds the hope of spring against the winter gloom. Transition is the short, painful phase that gives way to the birth of a new life.

Hope to share more soon.  Meanwhile, my prayer is that you find blessing in all of your transitions.

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

 

The Hamper of Love

Our son’s move to a group home is becoming like a wedding, with the exception that our family has someone moving out instead of in.

Like a wedding, the big plans all looked great on paper, but as the day draws near the details multiply like pick-your-favorite-thing-that-overpopulates.

Today was shopping for toiletries and some extra clothes for him to have at the new place.

20171104_160224Here’s the pile at midday.  I was proud of finding some sales and bargains.  I also rented a truck (no, it’s not in the laundry basket) to move furniture next week.

This morning was sweet.  His older brother and his wife were in town en route to a real wedding, and we all went out to breakfast.  Joey sat between them and smiled a lot.  Melissa remarked on how adult he’s become about social settings.  He doesn’t have to sit bookended by mom and dad.  He uses his fork and spoon like a pro (still don’t trust him with knives).  He interacts, in his own way, with those around him – when his orange juice arrived he wanted to use a straw, so he handed one to his sister in law to unwrap for him.  Yeah, he’s never gonna be cool with fine motor skills.

The weird thing is that as his moving day approaches, he’s increasingly fun to be with.  Is that just because we know the day is at hand and we’re relaxing?  Or, does HE know and is he angling for a sympathy extension at our place?

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…

 

 

 

20170723_110957

 

 

…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)

You open your email and…

On behalf of the Placement Committee, I would like to offer a tour at [a special needs group home] to Joey Fountain.

I like to write but all of the descriptions of my reaction to this message get trite. You know, my jaw hit the floor, my eyes popped out of my head kind of stuff.

Joey, our son with autism, is 23 now.  We’ve hoped for and dreaded this opportunity for years.  I can’t blog a whole lot on it at the moment because our thoughts and emotions are bouncing off the walls (man, this is getting cheesier by the keyboard stroke).

[Let me throw in one practical suggestion.  If you are a Google user, Google Docs is a great resource.  My wife started a document with our growing list of questions and stuff to get done as we approach the transition meetings and the move itself.  It auto-saves, so you can’t lose stuff by closing it in an emotional haze.  You can use email to invite in others (you know, your spouse and other care giving ally types), so they can open it on their screen and add to it as well.

If you are awake all night stewing about the issue (as are we), you can just add to the document and your allies will be able to see it when they open the document later.  No need to make copies and then more copies as you revise – you can all be online editing together in real time.]

In Raising a Child with Autism, I shared a lovely little vignette about Melissa raising gardenias and then wrote,

Giving away gardenias hardly compares to the “giveaway” in our future.  Joey is on a waiting list to move into a group residence.  It is uncomfortable to think about looking into his bedroom, just down the hall from ours, and seeing an empty space.  Like Melissa’s gardenias, he’s grown in beautiful ways.  And the time is coming to let him go.

That was composed in reflective calm, when the “waiting list” was just a vague background reality, something that wouldn’t really mean anything until…  until a couple of weeks ago when I opened my email and there it was, specific, real and hulking in the foreground of our lives.

I’m sure Melissa and I will share more here as we walk through this together.  Your prayers and encouragement mean a great deal.

For now, here’s a sweet picture of Joey, taken one 4th of July in Sioux Falls.  We know holidays can be a challenge for caregivers – here’s hoping that your family “fireworks” stay far off in the sky.

Smiling Joey

Hanging out alone together

We are getting our handful of gorgeous spring days here in Sioux Falls.  Soon humid heat will take over and we will wilt while the corn and weeds leap up to embrace the sun.

Last night we were guests at an outdoor wedding rehearsal.  Our son with autism enjoyed being outside in the pleasant weather.  The site had a swing set and that’s a gross motor activity that calms him.

More than that, the couple’s extended family includes a gaggle of boys around whom Joey is comfortable, in no small part because they are so friendly toward him but also understand that his reactions to them will be…uh…different.

20170505_195157I took this picture last night.  It looks like Joey is isolated in stereotypical autism.

But notice the slight turn of his head.  From his place of shady comfort on the soft grass, he’s enjoying a social moment.  He’s connected to the boys who are throwing and kicking various balls around the field to his right.

Although working to establish social connection and interaction with people with autism is vital, so is a gentle touch that finds their comfort zone.  For Joey, that’s often just on the edge of things.  He smiled on the edge of the dance floor at his brother’s wedding reception, for example.  He didn’t need to run away, but he didn’t need to dive in either.

His comfort last night – and the fact that others accepted his comfort zone – gave Joey social pleasure on his terms and allowed mom and dad to visit with friends and enjoy social time on ours.

Besides, they had a taco bar with nachos.  I mean, that’s a winner, whether or not you’re neurotypical.

Isolation

The first book signing for Raising a Child With Autism is history, but this isn’t about the book.  It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet.  My prayer list keeps growing with their names and needs.

One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges.  They care for a son with autism.

We noticed that people stopped inviting us to stuff.  I think they’re afraid of our kid.  My wife is at home alone with him more and more.  She’s really feeling isolated.

All kinds of care givers suffer in similar situations.  People don’t invite you out or you find it too much of a hassle to go.  Competent babysitters or respite providers are hard to find.  The person in your care is agitated if you go out on your own, but resists going along when invited.

Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season.  It begins with people in isolation,

2012-12-22_09-13-56_966When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…

But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.

Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”

We weren’t able to attend an Easter service.  I had to work and Melissa had to – did you guess? – be home with Joe.  Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.

There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula.  But I suppose it begins like most efforts to end isolation, with a conversation,

And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

We are blessed this Easter.  Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.

We are grateful to all who read what we share, who leave messages and otherwise communicate with us.  You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.

May God’s peace be always with you.

…when such a thing happens…

Everyone reading this book – indeed, every human being – needs to know that when such a thing happens, we are not alone.  Victor Lee Austin, Losing Susan, Brazos Press 2016.

If you are a family care giver, or if you know one, Victor’s book (and it really turns out to be his late wife Susan’s book just as much) can be at once a splash of cold water that wakes you up and a strong arm around you for comfort.

20170206_141154He tells the story of his wife’s long terminal illness and his efforts to care for her with great love and humility in a pure sense of that word, by simply being objective and not forcing any judgments.  Some questions are left hanging, and this book gets across how normal and necessary that is.  No tidy answers to the big questions, but great insight into family care giving and a gift of compassionate companionship for those who are caregivers.

Just as many combat veterans need others who’ve been in battle to process what’s happened in their lives, care givers will find in Victor and Losing Susan a level of understanding and acceptance that helps process uncomfortable emotions and experiences.

Reading this is a reminder that care giving thrusts orderly souls like Victor’s into chaos, free spirits into stifling routines, thoughtful people into impulsive action, rational people into irrational situations, spontaneous people into detailed planning, extroverts into isolation and introverts into a land of disintegrating boundaries.  And what’s worse is that this all involves the loss of the person most a part of us and most able to buffer us in life’s hardships.

As I read this book, I was struck by how much I would like to see couples read it while preparing for marriage.  God forbid that they should have to walk the same course as Victor and Susan, but they will walk some part of it.  This book, by telling a family story rather than framing a lecture, brings out the deep reality of

In the Name of God, I take you to be my wife (to be my husband), to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death. This is my solemn vow.  (Book of Common Prayer, 1979)

That kind of promise will take us into situations for which we are radically unprepared and, in all honesty, incompetent.  As Victor describes so well,

I never had any confidence about how much I should push or encourage her and how much I should step back and just let her be.

I’ve talked to a lot of people who have to care for others whom they love, and we always recognize this point of commonality.

This common lack is why care giving can’t be pulled off all on one’s own.  We need companions and, if we can recognize it, we need God’s grace.  Losing Susan is a voice for both.

Out with… with… I forget

So here comes the obligatory New Year’s post.  Although I think I neglected the compulsory Christmas post so I’ll cram them together.

Joey begins perseverating about Christmas presents – aka movies on VHS – in the summer.  We get mad and try to make him change the subject; Melissa makes him dictate a written list so at least some constructive interaction takes place; our eyes roll back in our heads…

presentsThen Christmas day comes, we wake him up for breakfast and presents, show him his loot ‘neath the tree, and he says…

“NO!!!!!”

and goes back to his room.

We eventually prevail upon him to open the gifts, which he does with grumpy histrionics before again retreating to his room without them.

Eventually, over several days, he begins watching his long desired movies and seems happy.

Well, this year we resolved (see that New Year’s hook?) to try a new approach, which was no approach at all.  We simply let him ignore the presents to see where his thought process would take him.  We offered them to him and then left them under the tree and waited.

Our older son and his wife flew in for the holiday, and we exchanged gifts with them a few nights after Christmas.  Joey seemed to get into the second gathering and opened his presents then.

Hypotheses include a) he wanted his brother there, although he did the whole “NO” schtick throughout the years his brother lived at home; b) he doesn’t want Christmas to come to a crashing end but wants to sustain the gift getting pleasure; c) oh, hell, I have no idea.

Here it is New Year’s Eve-day and I’m sitting here yelling at him to turn down the volume on the movies, which he’s enjoying.

I’m not big into resolutions.  But here’s a favorite scene that reminds me to be open to change, to quit pounding my head against autism or any other wall…

May 2017 bring you blessings, especially freedom from old ruts. May you have divine favor upon all that you offer.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come. (2 Corinthians 5:17 ESV)