“I need help, please.”

I need help, please was a bit of expressive language that some good teacher or therapist helped our son with autism to use years ago.

For a person like our son, navigating an array of impairments like fine motor and personal care skills, the request is vital for opening a bottle of juice or getting to the bathroom on time.  (Of course he also learned to use it to enlist mom and dad for remedial action; I need help, please could signal a wardrobe change or a bathroom cleanup.)

It’s a sweet phrase in our family life.  It’s entered that volume of cute things the kids used to say, so my wife and I might raise our voice to a childlike tenor and say it if we can’t  find some item around the house.

But it came to mind in a more serious context this week when I asked a clergy friend about his Easter service at a residential care facility.

He shrugged and said, Well, there aren’t that many there to attend because they don’t have enough staff to house the population they used to.

help

From here.  They need help, too.

I need help, please.

People with special needs need family caregivers.

Family caregivers need professional allies in public and private agencies.

Public and private agencies need good human and financial resources to support individual and family needs.

The need for help is broad, but energy, money, time, staff, space, love and other resources can be in short supply; either hard to find or quickly exhausted and slow to replenish.

It’s a tough and perennial problem, even for the ultimate caregiver,

And Jesus said to them, “The harvest is plentiful, but the laborers are few. Therefore pray earnestly to the Lord of the harvest to send out laborers into his harvest.”  (Luke 10:2)

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.

Sink your teeth into this

A dental hygienist and care giver to a son with autism did a bit of field research on what could help make a visit to the dentist a success for the child and family.

She found five factors, with communication central to the whole effort.  She visualized it this way:

Autism dental

From the linked article.

Note the importance of Parent carer confidence.  There’s the saying that you should be your own advocate when it comes to your medical care.  Caregivers have to advocate for those who rely on our help.  In the case of dental visits, the author of the study found that

Parents expressed a lack of confidence in approaching the dentist when issues arose. They often assumed that the dentist’s education had provided enough training to understand and support individuals who struggled attending dental examinations. For those parents confident enough to ask for minor changes to meet their child’s individual needs, they reported that these requests were often met with reluctance. Therefore, despite their best efforts, dental visits were largely unsuccessful.
Dental teams that took time to respond flexibly to parental requests for support had more positive experiences. Check-ups were also positive when the whole dental team became involved in the care of the child. This was demonstrated by one dental team who discovered a boy’s love for washing machines. There was a washing machine at the practice so the receptionists would take him to see it if the dentist was running late, or after his check-up.
Helpful strategies included providing information on what to expect before a check-up and making thorough notes so parents did not have to repeat themselves at every appointment. This continuity before and after a check-up was really valued by participating families.
When we express the likes, dislikes and needs of those in our care, we find that we can make allies.  Sure, there are people and places that lack flexibility.  It’s up to us to seek out and open up the practices that are supportive.

 

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.

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.

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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.

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.