Upside Down

Well, not literally.  I’m not flipping the car or other antics described in the last post.

The publisher of my book about the care giving experience occasionally posts excerpts on the web.  One came up today, and it flips into that “upside down” feeling,

I guess it can’t be any other way. There is no magic cure for autism. You have to take in lots of advice and experiment with different approaches because what lifts the life of one autistic kid could be fruitless or even counterproductive with another.

upside down me

Care giving: actual footage.

The universal manual of “normal” parenting fails to help. Normal parenting is to yell if you spot an emergency in progress. But if we’d raised our voices and warned Joey, “Hey, put that down. You’ll put your eye out,” we’d be living with a Cyclops by now. You learn to use soft, reassuring tones to say, “Honey, you’re standing in front of an oncoming bus there. How about standing with Mommy instead?” You find yourself looking at the world upside down.

Care giving is a practice in which common sense and conventional wisdom take frequent beatings.  Which is why I try to share some spiritual perspectives here from time to time.  Misery loves company as it stands on its head, and it also cries out for help that can bring things into perspective.

One of those days…

…on which I woke up at a mellow pace, had a fruitful time in prayer, went to the gym, and am now brewing some coffee with little on the agenda until a friend’s graduation party this afternoon.

In other words, the kind of dawning weekend most folks desire, but which is too often eclipsed.  This is especially true over the years of care giving.  Weekends?  Holidays?  Vacations?  HAHAHAHAHAHAHAHAHA

20180515_123848I read a novel for a library book club (yes, I can go to things like that if so inclined these days).  The title evokes some of my perception.  Care giving calls on us to bury a good chunk of life, especially our many preferences if we are true to the task.

Aspects of who I am are being excavated these days.  It’s uncomfortable rediscovering them.  Was I lazy or a failure to have let them get buried?  Shouldn’t I have kept life in better balance?

Or are such burials loving sacrifices?

These and questions like them exercise my heart today.  I am thankful that I have the time and space to ponder them.

 

Silver Roses

An excerpt from our book showed up on our Publisher’s page today.  Hope it helps you get off of your own back.

One year, my wife and I planted roses all around our backyard. If we knew what we were doing, we would tell you that the flowers were called Lady Wilhelmina Sunburst Spectaculars or some such name. The reality is we went to the nursery and said things like, “Oh, let’s get some of those silver ones.”

Sure, we had red roses and yellow roses, but we were really excited by the bush that would give us silver roses. Our friends would stare and sputter, “Wow, silver roses. Never seen those.”

We planted the silver rose bush in a prominent angle of our fence line. It would be the eye-catching star of the backyard. We followed the nursery’s instructions about how deep to dig, how much to water, and whether it liked red or white wine with meals.

Our dog at the time was a burly malamute mix named Rocky. Evidently, he shared our interest in silver roses. We came home one afternoon to find Rocky lying on the grass, gnawing on the dug-up silver rose bush. After much arm-flapping and loud shouts of, “Oh no!” and “Bad dog!” we replanted the bush. Rocky was a good dog and left it alone. A few weeks later, we had our silver roses. That rose bush didn’t pout because a couple of beginning gardeners forgot to protect it from their dog. It just went back to making silver roses.

Our son Joey endured much because his caregivers were medical amateurs. We never spotted warning signs before a seizure caused him to bang his head on a TV stand, making him bleed profusely. He couldn’t tell us that a stomach bug had him dehydrated, and all we could do was watch the emergency room nurses give him an IV to re-inflate him like a tire.

But after incidents like those, he just took up wherever he left off. Our expertise—or lack thereof—didn’t bother him. He went back to his daily routines and loved us just the same. Joey is not what we made him or failed to make him. He’s always carried strengths of his own that we can admire as precious gifts from God.

We are part of a culture that takes responsibility for too much and assumes that our every word, deed, or thought will have a life-altering impact. Caregivers take that warped thinking to another level since we are in constant interaction with people who have special needs, and we assume that we will do them more harm by our perceived failures.

“For we are to God the pleasing aroma of Christ among those who are being saved and those who are perishing. To the one we are an aroma that brings death; to the other, an aroma that brings life. And who is equal to such a task?” (2 Corinthians 2:15-16 NIV).

We are who we are. Others are who they are, too. Our impact on them is dictated as much by their own inner workings as by our intention and skill.

So let’s drop fear of failure from the one hand and fantasy futures from the other and concentrate on taking hold of what is true in the relationships entrusted to us by God in the here and now. Those placed in our care have special needs we can meet, but they are unique people and not just extensions of our lives.

Silver roses are not our creations; they are the beautiful flowers of tough plants.

No, you’re not crazy.

Well, maybe you are.  But since care giving puts a whuppin’ on body, heart and mind over time there’s no surprise that our lives reflect the damage.

I’m currently reading Being Mortal but Atul Gawande.  The author is a surgeon who also writes outstanding prose that invites the lay person to look at medical issues and medical professionals to look at the human impact of their work.

Yesterday, I read his description of an adult daughter caring for her father,

Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial… The burdens for today’s caregiver have actually increased from what they would have been a century ago.  Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner.  Last minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home… 

She felt her sanity slipping.

Misery (or is it madness?) loves company, and I was reminded of what I wrote in the intro to Raising A Child With Autism,

Maybe you are an amateur trying to be caregiver, therapist, clinician, advocate, mommy, daddy and everything else to a loved one living with autism. You feel like a lone idiot with a leaky hose when the job needs a landscape company.

So if you’re out there feeling depressed, or enraged, or exhausted, or or or or… just repeat after Dr. Sheldon Cooper:

sheldon not crazy

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)

Medical Meet & Greet

I need you to soothe my head
Turn my blue heart to red
(the late Robert Palmer. More later)

Our allies in care giving are precious. The folks who coordinate and provide services to our son with autism (Allies! Yay!) were quite helpful with recommendations for a new primary physician (Allies!  Yay!) to see our guy. I want to distill some of that experience in ways that I hope will be useful.

  • Let the person in your care help direct the search.  Note his/her day to day preferences.  Is your loved one more comfortable with men or women?  Younger or older adults?  Will the distance to the doctor matter – how does the person in your care tolerate travel?  Any and all subjective impressions can help you seek out the right doctor.
  • Know your needs.  We wanted a younger doctor who with potential to take care of our son for years to come.  We wanted a practice where every appointment would be with that actual doctor, not a Physician’s Assistant. (That’s not a knock on PAs, it’s just that our son does better with familiar people rather than serial strangers).
  • Ask around.  We do it all the time for all kinds of goods and services, so ask for recommendations.  We made an appointment to meet a particular doctor based on recommendations from professional staff we trust.  Friends who are caregivers can give you good insights from their experiences, too.  (You can tell I’m an aging caregiver.  I prefer old school “human intelligence” gathering to online stuff like Yelp.  I want to know the source of a review or recommendation, and I’ve had professional friends burned by crummy reviews made up by crummy people.)
  • Schedule a meet & greet.  Start building a relationship before there’s an emergency or acute problem.  We made an appointment for our son just to meet the new doctor.  I don’t want to be flippant about this.  I realize that for some of you, insurance issues might inhibit you from making appointments of this sort, especially if you are going to check out more than one doctor.  Our son’s disability coverage made this doable for us.
  • Ask questions and share info.  Don’t consider any question rude or stupid, or any anecdote about the person in your care to be trivial.  My wife was clear about our son’s resistance, up to and including violence, to short tempered people or while in a post-seizure state, and she asked the doctor about his ability to remain calm and patient.
  • Observe.  The person in your care needs to be at the meet and greet.  You will sense dynamics with the service provider right away.  The new doctor did the normal stethoscope thingy on our son’s back and chest.  Our son pushed the stethoscope away – but with a big smile.  That is our son’s way of bonding.  He goofs on people he likes.  He wasn’t pushing it away in discomfort or anger, but in order to establish a kind of play time with the doctor.  This was a good sign.

I hope some of this is helpful.  There’s the saying about “being your own advocate” when interacting with the medical world.  Caregivers need to practice that for those in our care as well.

OK, I said I’d get back to Robert Palmer. Here’s your dose of 70s music: