Strong mind, weak back

When advocating for our son’s placement in a group home, one of our arguments was our increasing age and the upcoming physical challenges of ’round the clock care for an adult with autism.

Now that he’s placed, our incredible wisdom is validated.

This week, Tim was diagnosed with something called “frozen shoulder.”  As the Mayo Clinic reveals,

Certain factors may increase your risk of developing frozen shoulder… People 40 and older… (Note: Tim’s about half past 40).

Even with Joey in a good group home, our age impinges on what we can do for him.  We just bought the new bed he needs, and Melissa’s call to the mattress place went something like,

My husband can come pick it up, but he’s got a shoulder thing.  Can someone there help him get the mattress on top of the van?  And can you tie it down for him?

Which is to say,

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.

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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?

Autism Awareness Month

There are so many good voices and resources out there to give greater insight into the lives of people with autism.  More and more, they are able to step up and represent.

Book CoverIf you know a family caring for a person with autism, chronic illness or other special needs, we hope our little book might be one useful voice you hear.

If you buy a copy and want it signed, let us know via the email button at our Facebook Page.  We’ll give you mailing instructions and work out a plan to get the signed book back to you or to someone you want to have it.

Thank you for reading here.  Most of all thanks for caring about autism, caregivers and the world around you.  Many blessings to you.

Quicker to hear, slower to speak

In Raising a Child With Autism, I wrote,

Joey is not what we made or failed to make him.  He’s always carried strengths of his own that we can admire as precious gifts from God.

More people with autism are expressing their own points of view.  For caregivers, these can be challenging but are precious to our efforts to provide care that is loving as well as “effective.”

Dan Jones is an adult with autism who shares his experience and insight via books and articles.  In a blog piece on Applied Behaviour Analysis, he praises ABA for providing tools that give people with autism behavior choices in school, the workplace, and other social settings.  At the same time, he raises a caution,

Another issue with ABA is that it is just ‘identify the behaviours that we don’t want the child to do and change them, identify the behaviours we want the child to do and get them doing those behaviours’. As mentioned, it misses the ‘love’ element, the respect for the child and what they are communicating by their behaviour and their inner world and emotions.

Care giving needs that love element.  There are all kinds of efforts we apply to teach skills and eliminate unpleasant and even dangerous behaviors, but we should not overlook the day to day relationship exchanges that can help those in our care express and embrace things that enrich their lives.  In another bit of Raising a Child With Autism, I recall how

Several doctors praised us for our son’s emotional connection, affection and happiness. Those who live with autism, whatever they might feel within, are challenged in their ability to express it and seem aloof if not completely detached from the feelings of those around them.    We didn’t have special knowledge or strategy to cultivate Joey’s warmth toward us. We just stayed close to him early on.

Melissa sang to him on days when he didn’t seem to hear a note; as a young adult he can enjoy an entire musical at the local playhouse.  We talked to him as though part of our conversations even when he didn’t make eye contact or walked away; now he can attend social events even if he just stands smiling on the edge of the party.  We made his place at the dinner table even when he had the habit of taking a bite and then running a repetitive pattern around the house (we would shrug and say, “Hate to eat and run…”); now he eats in restaurants.

There’s a nugget of spiritual insight in play here.  In the New Testament, the Letter of James encourages those who would be loving people to

…be quick to hear, slow to speak… (1:19)

Those in our care might not be able to express their hopes and disappointments, joys and hurts, dreams and fears with words.  But their’s is a language of the heart that can be shared over time if we slow our anxious antics enough to hear it.

I’m no Mary, he sure ain’t no Jesus…

When Joey was a toddler and we were at camp, the thought flooded my head like perfectly heated steam, while the sun poured into my skin like soft lotion. Some distant, bitter stranger, more like a stick-figure with a disproportionate index finger pointing at me was saying “That is blasphemy, you fool and you will writhe in the pit of Godless Hell.” My conscience made no sense of that brittle, screeching thing.

My thought was that Joey was Jesus and I was Mary. Well, not really. It was more like it felt so perfect, that the love was so pure that it had to be the same love. I thought of my other two children. Did I love them less? I loved them as much, no second thought. Immaculate Conception? Did any reader who barely knows me remain in their chair at that thought? Lastly, Joey had never spoken but one word: “tickle,” and at the time I did not know he would not begin to speak until he was almost five years old. Nothing exceptional about either of us, to the outside world, rather unnoticeable unless misbehaving. 

Misbehaving? I shall not digress much but a doctor has mended a gash in my cornea after one of Joey’s meltdowns. As for me, it took a couple of exceedingly large women walking slowly, diagonally across a mall parking lot, no crosswalk, not looking, got an earful from me and yes, I was sober. To my husband’s chagrin, I was shotgun. 

Back to camp. Joey was 2 years old. He had been diagnosed with severe autism 2 months earlier. Out here in the open, running, clapping or flapping his hands in the fresh-cut grass, he had very few sensory issues. An “older” mother, I was 41.

Now I am almost 62, Joey is 24 and I am thinking perhaps God needed me to love him as deeply as Mary loved Jesus to get through the years of violence and injury he brought, mostly to me because I was physically the weakest, emotionally the most vulnerable, and although autistic, he was smart-enough to know it.

And if that was not enough there were the “outsiders:” every  wise-ass parent who saw a neuro-typical looking child like mine behaving badly and concluded it was my bad parenting, or the parent of another autistic child who had all the answers… I should not have immunized him as I did my other 2, I should have spent tens of thousands of dollars for some amazing camp run by people who looked like the people who used to hang at Haight-Ashbury which would “cure” him. Lastly, the 6-figure paid government employees who knew nothing about education but decided what kind of help my son and other children like him would not receive. Those meetings were tortuous hours.

I still feel the overpowering love that I can only guess Mary felt for Jesus, who was helpless to the world. Of course it is completely different. Of course it is not.

 

I’m a little teapot…

Melissa and I just bought  this whistling teapot:

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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.

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.

One plan and many question marks

The staff at our son’s new group home are encouraging us to have him there full time instead of just weekends.  People with autism benefit from (heck, generally insist upon) predictable order, and Joey needs greater regularity in the new place.

But for our part, Melissa (mom) had a good insight for keeping him close at this time of the year.  Joey loves Christmas, and to let him spend time in familiar company, decor and activities showed him “that things he loves are not going away.”

He’s having a very merry Christmas.   I can’t remember one more smiley and less moody.  Last night his brother and sister-in-law took him to dinner, and this picture reveals how much that meant to him.  He’s not one to smile for the camera, after all… Joey Tim Carly

Later they went out to visit some old friends and he was not happy to see them go.  He opened the drapes and watched them get into the car and even verbalized feelings about wanting them to come back in.

We get it, this inevitability of change.  But it is going to be some hard going in our hearts in the short term.

below zero

 

Accenting the emotions is an Arctic cold front sitting on us for the time being.  At first it was just our usual hard winter cold with blue skies and bright sun, but yesterday it went to bleak gray along with… with… well, I’ll let my Chevy do the talking.  I could start a post with “It was a dark and stormy night” and be only a tad melodramatic.

Work is kicking my butt.  We set a sales record in my little department but my body is not what it was and the aches and pains never seem to go away.  I’m not sleeping well stewing about Joey and work and bills and and and and.

But that’s another point in favor of making Joey’s transition happen.  Melissa and I are not getting younger and our skill set and energy for care giving are not going to improve.

The church family from our last place in California is suffering through several members’ deaths in recent months.  These were folks around our age and younger, and two were without warning.   So that’s more pull on our hearts and our minds are grappling with this life’s impermanence and fragility (yes, yes, another point in favor of getting on with Joey’s transition).

Then there’s the coming transition in our marriage.  Don’t even have my heart and head fully wrapped around what empty nest will be like.  How will we be when all the decorations come down and Joey is moved out and the flurry of holiday happenings is over and we’re sitting here staring at each other across years of deferred relationship?

Might as well end this with that question mark, since there are so many things in process, unfinished and unknown swirling through our lives right now.

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:

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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