A way to pray WITH differently abled people

People of faith pray for those in our care, but can experience frustration when we seek the intimacy of praying with them.  The communication barriers between us can sink even simple conversation, let alone deeper dives like prayer.

I follow a gent in the UK who tweets as Disability&Jesus ( @DisabilityJ ).  He’s an advocate for inclusion and accessibility in churches.  He also promotes and participates in a website called An Ordinary Office.  “Office” here is used in a church context, meaning the marking of different times of day with prayer.

The site provides three formats to include differently abled people in the same prayers:

  • Makaton, a picture system (in some ways similar to PECS)
  • Text for reading
  • Audio

Here’s a screen shot from the Makaton version of Morning Prayer,

Makaton Prayer

Again, the site offers this same prayer is available in text and audio to include as many as possible in worship.

Of course it is worth remembering the very intuitive aspect of prayer; a person with special needs may well appreciate and benefit from your offering of prayers in which s/he doesn’t seem to be participating.

Like everything else in care giving, prayer will require persistent experimentation.  No one method will work with all people.

But cheers for the folks who offer An Ordinary Office.  They’ve come up with an accessible means to gather people of differing abilities in common prayer.

woulda shoulda coulda

I’m coming off a very sweet weekend in which Melissa and I marked 29 years of marriage (the large part of it as caregivers) and many kind people graced my retirement from church leadership.

It is one of those forks in the road where I guess I’m supposed to type memoir-like thoughts.  But I’m not.  The fork is not confusing and I don’t need to linger; I know where I’m heading next, at least in the short term.

I’ll be working at a local hospital in a specific kind of work, sterilizing medical implements.  It won’t be the kind of people-work that rides on one’s back all the way home and then sprawls all over one’s family and personal life.

I’m glad for it.  I applied for some other, more lucrative public service positions, but those didn’t come through – and in short hindsight I think that’s a blessing.  I couldn’t have given the emotional quality of work they needed.

The decades of family care giving simultaneous with the emotional demands of church leadership took a toll.  There were various highs and lows, but I’m not going back over them with a lot of “woulda shoulda coulda” self-absorption.  They were what they were.  I lifted a lot of people up and I let a lot of people down.  Such is human life.

20190528_080723Looking at myself honestly in the here and now, I can say that I have a good number of emotional punctures.  Not enough to incapacitate me or require major repair, but enough to know I need to keep things as simple as I can.  I’m like a garden hose with some nicks – sure, it’s not perfect, but it’s not time to throw it away.  It gets most of the water where it needs to flow.  A spot of duct tape and all’s well.

Care giving takes a toll.  I say that without shame.  It’s diminished me in some ways.

And I know it’s improved and enriched me as well.

If you are a caregiver in the trenches, you’re not crazy and, most of all, not a bad person (more than any other ) when you feel your nicks and leaks.   Care giving is costly.  As is anything ultimately worthwhile,

…through many tribulations we must enter the kingdom of God.  (Acts 14:22)

Two deaths, one love

Jean Vanier died on May 7th.  He was a gentle presence who moved people to significant action and life changes.  I was privileged to hear him speak about twenty years ago in Southern California.

Vanier founded L’Arche and Faith and Light,  now more than 1,500 communities in which “people with and without intellectual disabilities” live more as families than as professional caregivers and patients.  As Vanier said of L’Arche,

Genuine healing happens here, not in miraculous cures, but through mutual respect, care, and love. Paradoxically, vulnerability becomes a source of strength and wholeness, a place of reconciliation and communion with others.

He translated family-style care giving into “institutions,”  encouraging vulnerable amateurs to practice companionship and respect rather than technique.  His approach has been replicated in communities around the world, and to needs beyond intellectual disabilities.

Today…

Bill… I went to the conference center at the community agency that is the home for our son with autism.  They were holding a memorial service for Bill, one of the four other men with whom our son shares a group home.  Bill died late last month.

The seats of the ample conference hall were filled.

The current staff and residents, including our son Joey, were all there.

Other employees of the agency were there.

Other recipients of agency services came.

Former employees who knew Bill, including the Pastor who led the service, were there.

When given an opportunity to share memories of Bill, there was no lack of speakers, prepared and impromptu.

A message that echoed through the memories recalled the values that Jean Vanier carried in his work and that many caregivers who’ve never heard of him carry in theirs:

We’re not staff and clients, we are more like family.

There was a slide show of Bill’s life and a display of his favorite things.  The whole event reflected “person centered care,” valuing Bill not only as part of the community, but as an enrichment of it.

Bill’s warmth – manifested notably in a thunderous Hi! and sweeping wave of his hand to group home visitors  – was a gift to our family as we went through the emotional time of transitioning our son into his new house.  We trusted the staff and liked the house’s set up, but to experience immediate warmth like Bill’s was an extra that softened the big change in our family’s life.

Bill’s loved ones donated his belongings to the home to use as needed, and Joey inherited a recliner chair that he’d coveted and attempted more than once to occupy.  We will still think of it as “Bill’s chair.”

Jean Vanier, known around the world, and Bill, loved locally, merge into one.  Both reflect a community of love – relationships entered into vulnerably – as the model for care giving.

I came away from Bill’s service red eyed but uplifted.  The community is diminished, temporarily, yet lives in love.

Whatever their gifts, or their limitations, people are all bound together in a common humanity. Everyone is of unique and sacred value and everyone has the same dignity and the same rights.  (Jean Vanier)

…we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love. (Ephesians 4:15-16)

Hi!  (Bill Wilde)

 

Annuals

Our publisher’s site has another excerpt from our book up for ya.  It posted with some typos (since corrected) which was kinda funny because it is an excerpt about things getting out of our control…

Flowers Olde RectoryHere in South Dakota, the weather extremes must be navigated. If you plant before spring locks in, a frost can occur, and the annuals are history. In the midst of a broiling summer, a thunderstorm can sweep in and dump inches of water. You have mud puddles where your planting once shined. The blazing sun in the bright blue sky, like the pattern for our state flag, fries fragile flowers. The result is that we’re on hiatus from planting flowers here.

Joey’s autism does yeoman work of blowing up my fantasy of predictable order. Just when something seems to work, it breaks down. For example, Joey loved the water. One of my first memories of him appearing “normal” in public was at a beach where he ran out to the water and let the waves chase him back, all the while laughing just like the other little kids. But it wasn’t just the ocean. Any water made caring for Joey easier. Then he stopped liking water.

Give it a read.  Hope it is helpful if you’re in the midst of a “things are getting away from me” mood.  They are, of course, getting away from you.  But you’re OK.  No, not FEELING OK.  You’re OK because you are, against all the evidence, the very best resource that the universe sends to those in your care.

Maybe Next Year

Growing up in L.A., I was a fan of the Los Angeles Angels when they were a brand-new American League expansion team. When I was a kid, they played in the stadium named for the “real” team: the Dodgers.

But in my childhood, they were a “maybe next year” team. Maybe next year they would win more games than they lost. Maybe next year they would climb up from the bottom of the standings.

We have a “maybe next year” tree by the street in front of our house. We needed a tree out there to block some of the summer sun that routinely fried our lawn. We also craved fall color, so when a landscaper showed us pictures of a maple called a “Fall Fiesta,” we said, “Wow, look at all those fiery leaves! Put one in right now!” So he did. And all the budding leaves fell off, and the tree went dormant. We looked at our bare little tree all winter, praying that dormant was something different from dead. The tree budded in the spring. Of course, it hardly cast any shade, little thing that it was.

img_20161021_173959

The tree done good!

The next year was better. There was noticeable fresh growth on top. It grew taller. Its leaves seemed fuller. It didn’t shield the lawn from the sun, but it cast a respectable shadow where the dog liked to pee on hot days. There were some deep red leaves in the mix for autumn. Each year adds.

Like waiting on a plant to bloom, taking care of an autistic person requires patient hope. Your heart, and maybe your mind, will break if you are into precise timelines. “Next September our kids will achieve ‘X’” must be held loosely. “X” might happen in October, or November, or the following spring, or September two years out, or not for a very long time.

Like hopelessly loyal sports fans or amateur gardeners, caregivers have to keep telling themselves, “Maybe next year.” And in the next year, or tomorrow, or a few seconds from now, a once-abandoned hope arrives as a surprise.

Gardeners like ourselves must learn and relearn “deferred gratification.” We might want to stick a stalk in the ground and see a tree the next day, and we want to think that one or two sit-downs with an exercise book will have our kid reading literature in time for kindergarten.

But when it comes to caring for someone with special needs, it is important to hold a goal patiently. If it is a good goal, it is worth holding onto in heart, mind, and habits over many seasons.

Like travelers using the four cardinal directions on a map, people who follow Jesus find spiritual orientation from three cardinal virtues: “faith, hope and love” (1 Corinthians 13:13 NIV). Hope keeps us looking to the horizon, to what’s next. We hope for what we do not see or have, but believe what can be out there. Hope allows us to act with purpose, believing that our efforts are worthwhile and taking us toward a good destination. It means long seasons of waiting, of doing the right stuff over and over even when a desired result isn’t coming into view.

When we come to terms with hope, we find that it isn’t really about a particular event, thing, or outcome, but it’s about coming face-to-face with the one who is calling us forward.

Edited and shared by the publisher, from my book.

Holidays and Expectations

Ah, the holidays.  Happy memories of childhood magic float into our thinking, only to crash upon rocks of present reality.

This can be acute for caregivers.  We want to enjoy the season; we want to make magic for those in our care.

48362608_10217973652521354_2826689720354865152_oWe’ve been fortunate.  Our son with autism loves Christmas.  I’ll just share this picture-worth-a-thousand-words…

But he’s also done numbers on our memories and expectations (and property and bodies) over the years.  As I wrote in Raising a Child With Autism,

Joey has taught us a lot about saying goodbye to things we valued and enjoyed. We had a set of stoneware mugs from the bed-and-breakfast where we honeymooned. He threw one and shattered it. We kept a little mesh bag of Jordan almonds from a place setting at our wedding reception. He ate them.

The smiley kid by the Christmas tree?  You mean that happy child?

As I went on to write in the same chapter of the book,

Taking care of one off-the-wall, scary child of God means that a bunch of our nice stuff will get trashed. We can go down with our things and drown in a lake of resentment. Or we can find the love in our hearts that makes the well-being of that one person worth all the losses. More than this, if we open our eyes of faith, we can see God’s love for us.

Prayers that your holiday – holy day – catches even a bit of the holy.  A little goes a long way.  Little town of Bethlehem, a baby in a manger, from what seems small comes divine blessing.

Little you in your little part of the universe – you are a blessing to those in your care.

Caregiver Health Risks

Not sure we needed research to tell us this but maybe it will awaken some compassion in others who haven’t walked down (yes DOWN, as in stumble, fall, get up, repeat) our path.

Caring for others ain’t good for your health.  And if you fit certain profiles you’re at greater risk:

Participants with emerging chronic health problems experienced the biggest declines in health, with rates of hypertension, arthritis and rheumatism, digestive diseases, chronic lung and heart diseases more than doubling.

Being older, female, not receiving a pension, not feeling financially adequate and having depressive symptoms and functional limitations at the start were also associated with worse health among caregivers at the final follow-up.

deadI don’t have most of those factors working against me but stress about not feeling financially adequate is kicking my posterior.  Well, that and turning 60.  I get short of breath and feel overall weakness after bouts of anxiety – it’s like I can feel my own death settling in.

So, you know the drill.  You go to a doctor or other professional or even a friend you perceive as wise and you lay it all out and the reply is,

Hey, take care of yourself.

Take time for you.

Exercise, diet, sleep.

And of course your anxiety goes back up because these are exactly the things that are getting wiped out of your life and why you asked for help in the first place.

I go to the Bible often because it’s not the pie in the sky that many assume it to be.  Much of it is written to and for people caught in rotten situations.  There’s precious little “here’s how to fix it” and much more empathy and simple encouragement to hang in there, because who you are and what you do has meaning.  Here’s a good bit:

“God opposes the proud but gives grace to the humble.” Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world.  And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.  (1 Peter 5:5-11)

Yes – there are wretched things happening to you and to many folks just like you.

No – it won’t go on forever.

Yes – There are evil voices trying to talk you into despair.

No – those voices aren’t the final say.

Yes – there is divine power on your side.

The Greek word translated cast (cast your burdens) is a verb associated with throwing loads on pack animals.  Which is to say that when you pray – when you try to talk to the divine power about what you’re going through – you do NOT need to be elegant, gentle, proper, pious or whatever you think that talking to divine power entails.

Dump the load on God and insist – insist – that he carry what you can’t.

Did you catch the next line?  God will because he cares for you.

God can be the caregiver to caregivers.  Because the divine power does not get sick and die from taking care of us.  God has no risk factors.

Well trained in dysfunction

You’ve been practicing these habits for a long time and it will be hard work replacing them.

So said a good counselor after hearing another summary of my neurotic accommodations to life’s challenges.

While “normal” life invites us to try out personal training in dysfunctional thinking and behavior, care giving pretty much necessitates it.

Are you angry?  Practice holding it in because if you get loud or take a tone it will upset the person in your care.

Are you a people pleaser with crummy boundaries?  Keep pulling down your fences and pushing open your gates because you’re Just So Needed.  Where will those loved ones be without your sacrificial efforts?  I mean, the whole world might come off its axis if you stop.  And It’s All Your Fault.

Are you the addictive type?  Eat, drink, smoke or otherwise imbibe comfort, ‘cuz you ain’t gonna get it from healthy relationships (of which, it should be said over and over, you’re manifestly unworthy.)

20170715_131800A friend sent me this pro wrestling poster from our younger days.  Pro wrestling is a good simile for what I’m talking about here.  Yes, they train hard.  But it is to produce a product that is fake.

Hey, it draws cheers from the crowd if you do it right.  Even if all the pretense might leave you crippled.

My big discovery this week is that things are worse than I thought.  Why do you try to play God and take the world on your shoulders?, I’ve been asked more than once about my care-giving-supplemented anti-health training.

But that would be easy to address, wouldn’t it?  I mean, it’s a simple confession that my pride is taking on stuff beyond what a normal being can do, so the path of repentance is clear: identify the over-the-top stuff and leave it to God.

But what I realized this week is that I’m not playing God: I’m worshiping a false god, an idol.

Trying to make everybody happy and ensure good outcomes, the focus of my relentless training, IS NOT SOMETHING THE REAL GOD CLAIMS TO DO.

It is a fake god, a demon.  I’m not stepping into the middle of the universe to play God, which reality quickly corrects.  I’m wandering around in a phony universe, a simulation that maintains the lie and never delivers on what it promises and promises and promises.

Although a humiliating discovery, when I was able to express it I felt about 500 lbs. lighter.  Some restoration of health and sanity is already underway.

I wish I could say that it was like an exorcism and now the idol is gone and I’m back to reality and can’t we all just get along?  But there’s much more to do.

My working name for the idol is “FEAR.”  Fear goes back a long way in my life, taking up residence (at least as far as I can consciously regress) in childhood trauma that I’m not going to dump here.

But it now pervades everything. It warps decisions, it mocks every thought and stalks every experience.  It casts a smoggy haze over relationships.  Decades of care giving, with all the could-go-wrongs and worries that accompany it, helped FEAR embed and enlarge in my soul.

So I need to change my exercise program.  I need to pull down and smash the stones of which this great idol is built.

When people were dazzled by a great ancient temple, where political power and profit had displaced prayer and the presence of God, Jesus of Nazareth said, Yes, look at these great buildings. But they will be completely demolished. Not one stone will be left on top of another! (Mark 13:2, New Living Translation)

I’ve been repeating that – not one stone left on top of another – as the voice from the FEAR altar snarls in my consciousness.  My resistance training now must be pushing and pulling down worries and expectations over which I have no control, and stepping up to action where I can be responsible.  Saying NO more often.  Speaking for myself instead of bouncing back what I think someone expects me to say.

I hope this reaches some folks at the start of their care giving years.  Please, please, please: don’t smash yourself.  Smash the stones that are piling up – the false expectations that ask you to do things that aren’t necessary and/or by which you hope to gain some kind of elusive approval from the universe.

Smash your idol before its temple gets built.

Jerusalem Temple Stones Matt Kennedy

Jesus was right about that temple.  Matt Kennedy took pictures to prove it.

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.

And just like that…

ditch

He lifted me out of the pit of despair, out of the mud and the mire.  (Psalm 40:2)

…I was at the bottom of the ditch between north and southbound lanes of the Interstate.

I probably fell asleep at the wheel.  I know that one moment my car was heading north and the next it was turned west, running over an orange construction cone.  I managed to control the vehicle, not slamming on brakes and steering to roll with the the terrain.

I bumped down into the culvert, nosed the car north and, as it was running and did not seem damaged, was working to ease it back up onto the blacktop when I became stuck in the muddy bottom.

Smart phone, auto club, yada yada yada.  Just like that, I was winched out and driving home.  After a County Sheriff showed up and told me he wouldn’t ticket me for reckless driving and just chalk it up to stupidity.

Yeah, have a nice day.

Talking with my wife at home, I found out I’d been snoring the night before.  Full disclosure: I have sleep apnea and use a CPAP.  Came on just like that in my late 50s.  The mask must have slipped in the night and I was probably oxygen and sleep deprived.  The sun through the windshield warmed up the car and just like that, I was westbound on a northbound Interstate.

Just like that, we are old and do old folks’ stuff.  We fall asleep at embarrassing times and drive less aggressively but also less competently.

My wife talked about me needing to recognize my age and not turn around from a late night meeting and drive (which I had) to run right back to work early the next day (did that too).

Just like that, we were into a discussion about formerly easy household tasks that now seem like hard labor, changing diets, things with which we used to roll that now cause impatience, and other old people gripes.

Now, these are not unique to caregivers.

What strikes me is the way we didn’t accommodate the changes and evolve with them as we went along.  Just like that, they’re all in our face.  We didn’t age gracefully or go through midlife crises or any of that.  We went flat out as caregivers and just like that the role mostly went away and just like that we looked around and found ourselves aged.

So back to yesterday’s mishap – down in the ditch, just like that, my inner teenager represented as a compulsion to Instagram the picture of the tow truck setting up to pull me out.

I was struck by the cross-shaped apparatus being deployed atop that green hill not-so-far-away.  It’s the sign of life that Christians see by faith, and Jesus planted it right where we live, among the visible, sensually perceived signs of decay and death.

So my heart, mind and spirit are still in working order (assuming that meditating on the cross while being towed from a ditch isn’t a sign of mental degeneration, which can also arrive just like that.)

Anyway, as you come to the end of a season of care giving, you will find that a bunch of changes set in while you were so busy.  Be gentle with yourself as you recognize and adapt to them.

And don’t drive when you’re tired.

And if you’ve neglected it, commence a gentle turn toward things eternal: In you, O LORD, have I taken refuge; let me never be ashamed.  Do not cast me off in my old age; forsake me not when my strength fails.  (Psalm 71)