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.

 

Recovery reversal

Our son with autism has Seizure Disorder in his overall diagnostic and safety data.  The seizures came on with puberty and were terrifying intrusions in his teen years.

Now he’s in his 20s and the seizures have faded but not gone away.  They show up now and again with much less intensity.  Well, for him.  Not for us.

It used to be that a seizure knocked him out for a good 24 hours.  He would sleep and snore or at least breathe heavily until a groggy reentry into our world.  ‘Twas up to us to stay alert and watch over him.

Last night he was here for dinner and a small seizure broke through.  He knew it was coming; he knelt on a big beanbag chair in our front room and hugged the dog, protecting himself from the risk of a fall.  (Confused the heck out of the dog, though, as our son seldom interacts with the pets).

We thought, Wow, that’s sweet!  He’s hugging the dog… Then we noticed his forearms were rigid and vibrating.

It ended quickly.  We rolled him on his side on the beanbag chair but he was up and talking in a few minutes.  He went on to have full dinner and a pleasant evening amusing himself and deflecting our efforts to engage him in anything that seems like work (that’s normal – a sign that he’s fine).

Today he was all smiles, had a big breakfast and is off to his day program.

We, in contrast, continue to recover.  Neither of us slept well, as we hovered on the edge of sleep listening for sounds of another seizure.  I took a sick day from work to recover.

It is good that he’s moved on to his group home, because we are so absolutely aging out as caregivers.

Today I feel for the folks who care for (and age with) their spouses, who don’t have group homes or agencies to take over the work.  As one said,

They looked at my diet. They looked at my life style, my BMI and they are like “There is no reason for this!” I am almost diabetic and there is nothing to indicate WHY I should be – STRESS!!!!! That is one of the worst things on a body – my body can’t take much more STRESS! Despite the yoga, the chammomile, the meditation, the walking and support -being a caregiver is MONOTOMY PLUS and horribly stressful. There is no cure.

Pardon my language, but…

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.

We’re being followed

Here’s a bit from Raising a Child With Autism, courtesy of the publisher,

I was more on top of weed-pulling in our first garden. I had the energy of youth, the pride of a new homeowner, and it seemed urgent. Likewise, in the early years of Joey’s life, we were young enough to run ourselves ragged trying to do everything: work on every skill and learning drill, coach him through every small task, try to keep him engaged, clean up after him, visit and consult every expert, and go to every seminar and meeting. As each year passed, we accepted more freedom just to say “no.” We accepted that there would be all kinds of needs and issues all the time.

We also learned more about depending upon others. I pay friends’ kids to pull my weeds these days. In raising a person with autism, there are free services and activities out in the community, and some for which you have to pay. Either way, there are good and competent folks who can enrich the life of a person who lives with autism.  

You can spend all of your time pulling weeds. You’ll have a nicer garden, a sore back, and a growing sense of futility. The job is never done.

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Transitional objects (or, should Power Rangers really “Go, go”?)

So our son with autism has a new bed coming today.

It is a change made at his request.  He managed to verbalize the desire for a new bed in his old room for visits to our house.

We’ve been buying new blankets to replace frayed old familiars.  But here’s where autism and the need for predictability comes in.  Not only are some of these old items like old friends, they have the ability to make change (e.g. a new bed) more agreeable.

20180504_094038The issue at hand is an old Power Rangers blanket.  It is fraying and, while not presently bleeding out fibrous filler, it will soon be in that dryer-clogging-expensive-appliance-wrecking place.

We want to throw it away.  We want to make the new bed a new bed, dang it.

But this is where a person-centered approach is important.  We need to make such a decision Joey’s.  We need to ask Do you want the Power Ranger blanket on your bed or is it all done?  

If he wants it, we honor that.  If it starts to come apart, then we three have the conversation explaining how it is broken and has to go.

We don’t do stuff only to and for Joey, we do it with him.

Strong mind, weak back

When advocating for our son’s placement in a group home, one of our arguments was our increasing age and the upcoming physical challenges of ’round the clock care for an adult with autism.

Now that he’s placed, our incredible wisdom is validated.

This week, Tim was diagnosed with something called “frozen shoulder.”  As the Mayo Clinic reveals,

Certain factors may increase your risk of developing frozen shoulder… People 40 and older… (Note: Tim’s about half past 40).

Even with Joey in a good group home, our age impinges on what we can do for him.  We just bought the new bed he needs, and Melissa’s call to the mattress place went something like,

My husband can come pick it up, but he’s got a shoulder thing.  Can someone there help him get the mattress on top of the van?  And can you tie it down for him?

Which is to say,

The Dignity of Risk

Tim had a chance to speak to the staff of a non-profit community support provider.  Many of the attendees wore blue in support of Autism Awareness Month.

ABS Blue April 2018It was a chance to remind these care giving allies how much they mean to families like ours.

Tim shared a story from our book, recounting how we threw a little party to offer a personal goodbye to one of our son’s music therapists before we moved to another state. He noted that educators, medical providers, therapists and all kinds of other direct support folks don’t hear from families unless and until something is wrong.  Our interactions tend to be steeped in bad news. We need to find ways to say thank you and, as the New Testament puts it, encourage one another and build one another up (1 Thessalonians 5:11).

As we shared in an earlier post, community support agencies have the heart and vision to provide all kinds of help to people with special needs and their families, but are hindered by lack of staff.  When Tim asked his audience what things families, churches, community groups and other neighbors could do to enhance their work, responses included

  • Identify people suited to care giving and encourage them to consider it as a career
  • Help the public understand the work of service providers and why they do it
  • Provide meaningful interactions and opportunities in the community for the people receiving services
  • Express gratitude to caregivers
  • Engage in advocacy work on behalf of community support agencies

One of the people present spoke of care giving as possessing the dignity of risk.  Caring for people with special needs means going down unfamiliar paths, trying out the untested, sometimes trusting intuition in opposition to common sense, and learning to center efforts on the person in our care instead of our own expectations of “what’s best.”

Families have this risk, dignity and all, dropped upon us when our loved one is diagnosed.  We accept the risk out of love and duty.

We are blessed when folks who don’t have to accept it choose the dignity of risk as a way of life.  May their tribe increase.

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)

Paper Trail

Melissa is reclaiming a room of the house to turn into a man cave for Tim.  Well, more of a study really since Tim lost his man card ages ago.

Anyway, this is an empty nest dividend, a chance to use space that was ignored or allowed to be thrashed during the long years of care giving.  To friggin’ enjoy parts of our house in non-care-giving ways.

20180421_180524Today we cleared out two broken down file cabinets.  They will be hauled away but oh what they held.

Well, frankly, most of it was trash.  Sure, important trash that will need to be shredded.  But stuff no longer needed.

Years of mortgage and refi paperwork from trying to strike deals to make ends meet without upending our son’s life.

All kinds of medical insurance stuff as the pursuit of more income, better coverage or simply more time to meet care giving demands worked itself out in an array of job changes and second jobs.

And of course tons of educational and social service type stuff that life with autism generates.  IEP “invitations” and outcomes that seemed like the be-all-and-end-all of life at the time.  Report cards.  Respite care accounting forms.  Our son’s participation in a University of California search for autism causes in the environment (no, they didn’t find one).  All of those pull-off-the-ends-and-lift-the-sticky Social Security Administration forms.

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Not even the tip of this iceberg.

There were a few important things to retain, but by and large the paper trail of our care giving life is heading to the garage in reinforced bags to be handed over to a shredding service.

Then there were some sentimental rescues.  Pictures of Joey, class photos from various schools, notes from teachers and others who helped Joey and our whole family over the years.

Those we boxed for various destinations – some for a shinier new file cabinet to come, of course – but others for a scrapbook for Joey.  He delights in looking at pictures of past friends, teachers, neighbors and classmates.  Will be a joy to bring a collection to grace his new home.

20180421_180647.jpgAnd you can bet that some paper will just live here with us, in wallets and purses, in drawers where we can bump into a memory in the course of daily routines, maybe in albums for us.

I mean, who else will  reminisce and smile and maybe shed a sweet tear over a picture of Joey turning his back on the camera… and on Santa?

“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.