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.

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.

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)

Don’t Call Us

Our publisher’s site features a bit from our book today.

If you are grappling with frustration, especially if it’s born of perfectionism and the constant setbacks of care giving, you might find this little selection useful.

pathetic-7If our efforts to raise houseplants have been hit and miss, imagine some of the misadventures of raising a son with autism. Caregiving provides instant and constant experiences of inadequacy. Just as we’ve tried various strategies to keep the plants growing, we’ve sought out an array of therapies, settings, medications, specialists, diets and more to bring out the best in Joey’s life. And even with all that help, there are plenty of withered efforts to report.

It’s not all gloom and doom.  Some of the spiritual uplift (we hope) of the book comes in as well.

Hoping you have some good growth and blooming amid all your fails and weeds today.

Reading while waiting

clock

Pic from here.

On this end, we’re still waiting on a new meeting date to get our son’s residential placement going.

This morning while waiting for the bus to his day program, I ran into a young woman’s blog piece about living with her brother and his autism.

What she describes gave me a brief shiver of memory.  We endured some of this stuff for years.  Yes, our son has come a long way; no, that doesn’t erase the gut reaction when reading

First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.

And the decades between the young woman and our aging (aged?) selves evaporate as she describes our common worry,

I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?

OK, back to waiting.

Are we awake or dreaming (or both?)

Well, here it is…

Joey move invite

For those new to the game, ISP is Individualized Service Plan.  Or Ineffective Stammering Parent.  Or something like that.

Yes, that’s this week, so there won’t be much blogging going on.  The wheels or gears or whatever are in motion for our son with autism to move into a group home setting.

There’s exhilaration.  The daily chores and crises pulling me away from every thought or pleasant experience are about to end.  No more watching the clock when out to a meal or social engagement.

But there’s worry, too.  I (Tim) am having dreams in which Joey gets lost and I’m running around trying to find him, hindered by various circumstances.  I am going to miss his presence in ways I can’t even anticipate.

Your prayers and cheerleading are welcome.

Taking the show on the road

Sunday I preached at a church in Watertown, South Dakota.  That’s about 2 hours north of us.

Because our son with autism has had a string of sleepless (read active, boisterous) nights, and my wife has been up with him so I could sleep enough to work, I decided to chance some chaos and take Joey on the road with me so Melissa could sleep.

The risk is that Joey is an excellent traveler but a terrible arrive-er.  He’s fine on a long car ride or even a plane flight.  He loves looking out windows-in-motion.  But once at the destination, he starts saying, Go back to Joey’s house and doesn’t want to take part in the doings at the new location, at least while it’s strange to him.

On the way up to Watertown, I played music he likes.  He’s a big fan of The Guess Who.  He likes all kinds of music but he’s especially attentive to vocals, and Burton Cummings is no slouch.  I’ve had this Guess Who collection to play in the car for him for more than ten years.  It was important when we moved halfway across the country back in 2004.

20170723_100133Soooo… we arrive at church and Joey is calm but not social.  One person said, Joey, you can sit down wherever you want.  Which of course led to him sitting in the pastor’s seat, unwilling to budge.  The folks weren’t bothered, and they got me a matching chair.

Joey was calm throughout the service and endured listened to my sermon.  I sat next to him when other people offered readings or prayers, and he was responsive to my requests that he use indoor voice when others were speaking.

20170723_110957After the service, he wasn’t interested in visiting, even when pastry appeared.

<–This picture presents Joey’s version of what church-types call fellowship.

Again, he wasn’t agitated.  He just looked out onto the sunny day while the rest of us swilled coffee.

He was patient while I signed a copy of my book for a church member and visited with folks for a few minutes.

I was blessed by one person’s account of having worked at a state facility.  She pointed out the great changes in a very short span of years – it wasn’t long ago that such facilities were, by design, a way for families to keep members with special needs out of sight and out of mind.  Now, family caregivers are more active participants and advocates in the lives of their loved ones, even those who are in institutional settings.

I offered to take Joey to lunch, and listed some of his favorite foods to help him choose.  He resonated with quesadillas, so off to Guadalajara we drove.

20170723_114044Here’s Joey downing some tortilla chips while waiting for the quesadilla to come.  Glad he was in bright primary blue – he fit right into the restaurant’s decor.

We had a very nice lunch and drive back, with more Guess Who.

All in all, it was a sweet day.  Mom got some overdue and well deserved rest; dad and son had an enjoyable road trip.  The fear of chaos didn’t pan out and a few minor misadventures at church were more humorous than anxious.

In case you’re wondering, here’s Joey’s favorite Guess Who track,

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