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.

No. Words.

32t0b5No, I don’t mean people who are non-verbal due to disability.

I’m talking about me with my jaw on the floor, gobsmacked as my Brit friends say, verklempt.

A friend sent me this news coverage of a Gary Indiana school (well, at least a teacher therein) that gave a student with autism a year-end award as BAILEY PREPARATORY ACADEMY 2018-2019 MOST ANNOYING MALE. 

Given the reality of fake news (uhhh, does that make sense?) and a recent distortion of euthanasia news from the Netherlands,  I wondered if this Indiana story was true.  As far as I’ve been able to discover, it really happened.

From the story,

He [dad Rick Castejon] said that his son is nonverbal, occasionally rocks back and forth and can become easily emotional. Teachers often call with concerns about how to handle his son’s behavior, the father said. 

“They called me all the time if he didn’t want to work, would cry or would have a breakdown,” Castejon told the newspaper. “A special needs education teacher should know how to handle these things.”

You would think.  As was I by reading the story, the dad was stunned by the – uh – gesture, and just wanted to walk away from it,

Castejon said he didn’t want to create a scene and tried to leave the award on the table at the end of the lunch, but his son’s teacher reminded him to take it with him. 

There are all kinds of directions in which to run with a story like this, but I’ll just stick to the care giving focus of this blog:

Caregivers are blessed, by and large, with well meaning professionals in education, medicine and other fields.  But at the end of the day, we remain the primary caregivers and best advocates for those in our care.  Even when words fail us, and we just want to scoop them up and carry them from hurts.

And, thankfully, some hurts don’t reach them.  It’s unlikely that Mr. Castejon’s son understood the “award.”

But his dad, his caregiver, felt the hurt.  That’s some of what we do.

And it stinks.  But like anything else, it can be sacred work,

Don’t repay evil for evil. Don’t retaliate with insults when people insult you. Instead, pay them back with a blessing. That is what God has called you to do, and he will grant you his blessing.   (1 Peter 3:9)

Do not be overcome by evil, but overcome evil with good.  (Romans 12:21)

Puppy Dog Tales

Yesterday was the long anticipated Sunday night battle on Game of Thrones introduction of our son with autism, Joey, and our new puppy, Henry.

It was, well, autistic?

Henry wiggled up all full of canine cuteness and joy and Joey didn’t make eye contact.

“Joey, this is Henry” we squealed with caregiver cuteness and joy.

“No” came the J-man’s “I’m not interested” reply.

Henry Peter Griffin pose

Reminds me of Peter Griffin after a fall on Family Guy.

Henry sulked.  His 8 puny weeks of life have been non stop adoration by the cosmos.  When we apologized for posting so many puppy pictures on social media, several people replied “There’s no such thing as too many puppy pictures.”

So Henry had his first moment of existential rejection, courtesy of autism.

887210_A140107_004A

 

 

 

It’s not that Joey doesn’t care.  His affect was aloof when it came to Lily, our dear departed Black Lab.    But when we she spent a night with the vet Joey wore a distressed face and kept saying “Lily’s not here.”

Henry just experienced one of the stinky things about care giving.  You put your emotions out and you don’t get the responses you want.  We’ve been relatively blessed, as Joey has been emotionally connected (albeit expressed in some roundabout ways); many families of people with autism would kill to get even some roundabout engagement.

Lily last picture

In her day, Lily wasn’t put off by Joey’s autism.  She would hover protectively after he suffered seizures.  And in my very last picture of her  – wouldn’t you know it – she’s sharing sunshine with Joey by last year’s freshly cut Christmas tree.

 

As for Sophia the cat?  fuggedaboutit

 

Be a voice while waiting for a voice

APRIL IS AUTISM AWARENESS MONTH

A mother with considerable language skill shares about coming to terms with her daughter’s autism:  

As a speaker of English, Italian, French and Russian, the fact that my daughter did not have speech was a constant source of despair…Yes, I still find myself hoping that one day my daughter will speak to me and tell me all about what it’s like be autistic, but for now, I can wait.

The mom makes use of her local newspaper to share insight into autism and the needs of family caregivers.  Being a voice for those in our care and for caregivers can spread not only awareness but opportunities for support and compassion:

Without a support group, I had no guidance on how to deal with issues created by my daughter’s condition in public, so I did the best I could to be honest and take responsibility.

When a stranger would scold my daughter or shout at her for behaving inappropriately in public, I would say, “I’m sorry. My daughter has autism. We meant no offense.”

I didn’t know how people would react, and I was surprised by the response I got. Often the person would say, “I’m sorry. I didn’t know.”

But sometimes they would say, “I have three grandchildren with autism,” or “My niece and nephew have autism,”or “My best friend’s son has severe ADHA and is on the spectrum.”

On at least one occasion, a complete stranger came up to me afterwards,, and told me about a member of their family with a disability.

There are a lot of us out there, and if you follow the news on autism, there are more of us every day.

Often we would take a few minutes to talk about the difficulties involved with rearing a child with a disability and the stress, not just about behavior, but also of not knowing where they will be developmentally in 10 years, or 20 years, or after you’re gone.

I learned that I wasn’t alone.

Recently, a group of us in Yankton formed our own “Mothers of Disabled Children” support group. It’s small, and we’ve only met a couple of times, but I already look forward to hearing about what’s going on with the other moms and their kids — without judgement.

It is a great example of communication with the community, both in the happenstance encounters she describes and in the intentional formation of groups and use of local information sources.

 

Rules of Engagement

APRIL IS AUTISM AWARENESS MONTH.

Yeah, this post’s title is a military term.  Rules of engagement tell you when you’re allowed to shoot back.

Sometimes care giving feels like combat, albeit in non-lethal form.

One particular battle is the effort to engage people with autism in collaborative behavior.  I was going to say meaningful behavior but that assumes that people with autism are absorbed in meaningless behavior on their own, which is not true.  Their behavior has great meaning to them, even if we can’t always crack the code and understand it.  And who knows, maybe they perceive our antics as meaningless.

OK, back to collaborative.

Our 25 year old son with autism, Joey, lives in a warm and supportive group home here in town.  Our custom is to pick him up on Sunday afternoons for dinner and an overnight with us.

We try to engage him in play, household activities or just chit chat.  None of these have ever been among his favorite things.  And as we shared a few weeks ago, his priority right now is to negotiate and nag about an unavailable form of entertainment he used to enjoy on his own.

So there’s some creative combat as we try to get him to say or do anything besides chanting “VCR will be here soon.”

Music usually engages him, but he’s figured out that playing tunes on our computers or phones is our effort to stifle the VCR negotiation.  So he either covers his ears and stomps away, whines “No MUSIC” or, wonder of wonders, forms a sentence to say, “I want quiet, please.”  Which is collaborative communication, except it leaves us all staring at one another non-collaboratively.

So I ran and got some picture books from our years of accumulated kids’ books.  We got a few smiles out of him with our funny character voices,  but he would not sit on the couch with us to look at them, let alone read with us.

So Melissa continued to try an engage him in talk or music while I huffed away to empty the dishwasher (does he think I’m engaged in meaningful behavior when I do that?  Do I?)

Then a little light bulb fizzed on over my head.  I said, “Hey Joe, come in here with dad.”

He glowered at me.

“Come on and help dad,” I chirped.  “This will be FUN!”

He uncurled from the couch and stood looking at me.  I indicated the silverware drawer.

20190331_213344“Help dad put these away.”

I handed him a butter knife.  Lo and behold, he put it in the slot with the other knives.

“Good job with the knives,” I oversold the moment.  Then I gave him a salad fork.

He put it in with the other smaller forks.  That was impressive, as he could have just mixed it up with the larger dinner forks.

I commenced praising him and called out my delight to Melissa.  I was going to move on to spoons, but he made an annoyed face, sounded off with his go-to word, “NOOOO,” and returned to the couch.

We counted the night a success.  Caring for people with autism requires rejoicing in small victories, connections that might seem trivial in what we perceive as normal life.

We’re still refusing to chase after another VCR.  But we are adopting a puppy.  And we’re provisionally excited, because Joey made eye contact and whispered “Yes” when we told him about it and Melissa showed him pictures like this one:

20190330_130429

This little guy is named Henry.  We hope he will help us with some fun engagement with Joey.  That is, once Henry’s done eating Melissa’s glasses.

So, what forms of engagement reach the one(s) in your care?  Always open to new tactics.  What works with one person with autism doesn’t necessarily reach the next one.

Very often, the most loving care is to keep showing up, trying again or trying something new.

And sometimes just showing up and letting them be.

Are you a family caregiver or know someone who is?  Consider getting or gifting our little book for this Autism Awareness Month.

 

Antiquetism

Our son’s 25th birthday is at hand.

Joey at DavesHe’s picked out a fave place for dinner.  They serve up his favorite burger & fries and a mound of vanilla ice cream sporting sparklers for birthday dessert.

But on the gift front, we are stalled.  We were messaging with his older brother last night, and at a loss for ideas.

His gift choice for most of his life has been movies – – – in VCR format.  (The link takes you to a piece from the Wall Street Journal, which, if you can get past the subscription sales pop-ups, speaks fondly of the technology as antique and having reached its demise.)

20190223_125608

Actual morgue photo.

You can still find VCRs for sale, but they’re increasingly expensive and impossible to maintain or service.  Our son is a button pusher extraordinaire, and the contraptions give up the ghost to that or to the funk of his very old video collection.

We are feeling for him.  Melissa points out that this has been one of the principal pleasures of his life, and now it’s gone.  He’s chafing at our suggestions of watching his movies on his computer, but that seems the best way to go.  He’ll trash or lose discs, thumb drives and other such media.

Anybody else made this transition?  Wide open to suggestions, both on replacement media and techniques for helping him embrace it.

Leaf me alone!

adult alone autumn brick

Photo by Pixabay on Pexels.com

Leaf me alone is ethnic humor that could once pass between friends of different backgrounds.  It was cool when my Mexican American friend used it 40 (are you kidding me?  Forty?) years ago in our Army barracks in (then West) Germany (quite a history lesson here, eh, kids?)

When my friend John C. (whom I annoyed by calling him Juan Carlos) was having a bad day, he would exaggerate a stereotypical Chicano accent and tell the world, Leaf me alone, esay.

It’s Wednesday as I type this.  Hump Day, midweek, and, deep down inside, a caregiver somewhere is screaming at the cosmos.  Leaf me alone, esay.

My morning meditation turned up that very scream, aimed at no less than God, albeit in an ancient Hebrew version:

Take your affliction from me; I am worn down by the blows of your hand…Turn your gaze from me, that I may be glad again, before I go my way and am no more. (Psalm 39)

While our insides might scream Leaf me alone and Turn your gaze from me, family caregivers are good at smiling for the outside world and thanking people for well intended compliments like You must be a very special person for God to entrust you with this.

Some friends are perceptive enough to make a face and say, Man, I’d go crazy if I had to do that.  Or, as one counselor told a family caregiver, You’re very skilled at living in hell.

I’ve noticed on doctor visits that the “depression inventory” forms the nurses sometimes require include feeling like you would be better off dead alongside the more direct any thoughts of harming yourself?

The former is more common.  It’s not necessarily a threat of suicide but is an inner dialogue by which overwhelmed people say leaf me alone.

That doesn’t mean we’re just “venting.”  It is horrible to be in the place where life (or at least our place in it) is no longer viewed as a gift to enjoy.  Such thoughts can indicate the need for medical help, and we shouldn’t be ashamed of that.  Care giving takes a toll.

No great advice for you here.  You already know the responses… things like

  • Take respite.  I know, I know, IF it’s available.  Which it sometimes ain’t.  Like a prison inmate, you might have to create it in your own head.
  • Have friendships/activities not tied up in care giving issuesLeaf me alone is about the grind, not about all relationships and activities.  Some are welcome – so welcome them.
  • Try to prepare and eat healthy foods.  I can tell you that I’ve become a decent cook over the years.  It is more work but if you fight off the urge to microwave junk and get on with preparing more fresh stuff, you’ll feel better and you’ll find some fun and good mental activity in it.  And talking about recipe ideas with others is a great way to keep conversations from wallowing in care giving stuff.
  • Exercise – even if just walking the dog around the block.  As Mrs. Obama said, Get up and move.  Get your blood flowing and your heart and lungs working.  Turn some of the boring household chores into opportunities to stretch and flex yourself.  If you normally reach with one hand to do a task, try using the other hand.  If you tend to favor one knee while kneeling to pick up stuff, bend the other one.  Your whole system will benefit from little efforts like these.  Taking on one resented chore each day can give a sense of accomplishment, too.

I know – these things are hard to establish and maintain in many care giving situations.  But they are the antidotes to Leaf me alone, which was funny the way my friend said it but not funny in care giving.

Sprechen Sie my stuff?

Back in my Army days in Germany, I was sitting with some friends in a restaurant bar.  There was another American at another table, trying to pick up a German woman.

She didn’t speak much English, it was clear, so he attempted to connect by… getting louder.  As if raising his voice could overcome their lack of common language.

I ran into a couple of interesting articles today, each about building connection with people in our care.

In Getting Into Their Heads, Carol Bradley Bursack encourages caregivers to refrain from arguing with those in our care who live with dementia.  She encourages rolling with delusions where practical, building a bridge to the caree’s reality,  in one case buying a particular school’s class ring for her dad, who believed he’d lost his (he’d never had one in the first place).  She writes,

This is only one example of the effect of not arguing about “facts” with someone who has a different view of facts than you have. To someone with dementia, what they believe is just as true as what you and I believe to be true is to us.

She is quick to acknowledge that this is not always feasible, but still a tool to keep in our kit,

Sometimes…all we can do is try to comfort them and get them through to the next cycle. But why would we want to do that when we don’t have to? Isn’t it easier to agree that the sky is green that day than swear it’s blue? Who does it hurt?

A New York Times piece explores building social connection with people living with autism.  The two professors who combined on it are concerned that people assume limitations rather than explore possibilities:

Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors and, eventually, social withdrawal. As an autistic participant in one study explained: “I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior. There’s a point where you say, ‘To hell with it, it’s impossible to please you people.’”

The danger of being assumed to be socially uninterested is especially acute for the roughly one-third of autistic people who do not use spoken language reliably. Like other autistic people, they behave in ways that get misinterpreted, and they may not be able to correct the record.

For all of us, whether we are socially motivated at any given time depends on much more than our innate predisposition for sociability. It also depends on how we’ve been treated in the past; our ability to tune out distracting sights, sounds, smells, thoughts and feelings; and the attitudes and behaviors of potential social partners.

They are articulating what many agencies call Person Centered Care.  We do well to learn the modes and means of social interaction that work for a particular person and build from there.

Our son with autism uses movie lines (especially lyrics from musicals) to reach out to others, and can be engaged in return by those who “learn his language.”  He is capable of expressive and receptive social communication, but not always on our expected terms.

So, like the GI at the German table, don’t just raise your voice.

Well, unless the person in your care likes yelling.

 

Prime time

Amazon Prime Days are at hand, running from the afternoon of Monday, July 16th thru Tuesday the 17th.

Book Cover

If you’re shopping at Amazon consider snagging our book, which distills our care giving experience and hopefully offers an encouraging word or two for those in the stinky trenches.

Besides, the kid broke another VCR and… well, heck no, I’m probably NOT buying another such hard to get and pricey item for him.   But maybe you can send us out to a nice dinner and drinks to assuage our frustrations.

Hope you’ll consider checking out the book – for you or a care giving family you know.

Not available for VCR, but there’s a free download for Kindle Unlimited.