Missing Cushion

Our 28th wedding anniversary comes up toward the end of this month.

We’re coming up on half a year since our 24 year old son with autism, a presence for all but four of our married years, moved to his group home.

20180516_074005Someone described empty nest couples (sorry for the mixed metaphor ahead) as two people finding that “the cushion is gone.”  Two people with a relationship… what? invested in?  distracted by? absorbed with? filtered through? children wake up and find this empty space between them and start trying to scoot together across it.  Or refill it.  Or whatever else people do with empty spaces.

Deferred desires long stuffed under the cushion become visible.  Missed time with friends and extended family, skipped travels, unmade personal touches to home and yard, shrugged off study and career opportunities and piles of other hoped-for endeavors are there, but harder to pick up now that the restrictions of age, time and overworked finances have fallen into that space with them.

Old grievances come into the space.  The demands of the special need were exhausting but they buffered deeper discussions and discoveries that the couple should have shared.  Now these flop in with all of their emotional distortions and disputed memories and toxic colorization of today.

There’s pleasant stuff, too. A gentle pace of life was buried under the cushion and can be restored.  Daydreams can be shared over coffee or cocktails. Decisions can be talked out at length.  There isn’t a frayed and fragile cushion sitting there demanding urgent care.  Life doesn’t have to be lived as a constant emergency response.

The two shall become one flesh says God through Moses, Jesus and the Apostles.  With the cushion gone, the two can dare to shimmy across the couch, risk a hug, chance some words from their hearts, and get on with it again.

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.

20180421_180423

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?

Flurry of memories

20180414_132115Much of our region is shut in by a massive blizzard today.  The City of Sioux Falls is asking people to stay off of city streets, let alone risk country roads or the Interstates.

Now that we are empty nest, I find myself remembering the anxiety that would have accompanied this kind of day when we had our son at home.  Everything would be wrong and a potential meltdown: if the weather cancelled an anticipated outing; if it prevented fulfillment of a whim for some particular food that wasn’t in the house; if any daily routines were in disarray.

Boredom would make him edgy and mounting stress could issue in a seizure.  But he wouldn’t engage in activities we tried to share.  He’d generally vocalize some demand that was impossible to meet and his tension would escalate.

Today he’ll be in his group home.  He has his own room with a computer and movies in case he wants to be alone.  There are common spaces with things to do if he wants company.  And there are staff there with the residents doing what we used to do, and we are grateful.

Stressful days are not limited to snow days when it comes to autism and care giving.  School vacation or “in service” days, when routine is removed, can be walks through hell.

My respect goes out to all who are shut in today, be they people with special needs or their caregivers.  Whatever inconveniences and challenges most of us endure, they have an extra helping or two.

Voices

Those in our care have values, pleasures and priorities.  As family caregivers, we are often best able to recognize and interpret those to the world should the people in our care have any communication impairments.

But there are many who receive care who are quite able to speak up for their own lives, like this young man,

Seriously, I have a great life!  I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn’t have to jump the fence either time…Surely happiness is worth something?

Sometimes we have to be advocates.  Sometimes we just need to listen, affirm and encourage.

As many Christians around the world observe our Holy Week, we do well to remember that the One we honor and proclaim listens to voices we ignore or shut down,

People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them.  When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”  And he took the children in his arms, placed his hands on them and blessed them.  (Mark 10:13-16)

…Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside.  And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!”  And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.”  (Mark 10:46-49)

Jesus walked through our world announcing that no person was inconvenient or unwanted.  He spoke up for the voiceless and heard the cries that others sought to silence.

He still does.

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.

Sink your teeth into this

A dental hygienist and care giver to a son with autism did a bit of field research on what could help make a visit to the dentist a success for the child and family.

She found five factors, with communication central to the whole effort.  She visualized it this way:

Autism dental

From the linked article.

Note the importance of Parent carer confidence.  There’s the saying that you should be your own advocate when it comes to your medical care.  Caregivers have to advocate for those who rely on our help.  In the case of dental visits, the author of the study found that

Parents expressed a lack of confidence in approaching the dentist when issues arose. They often assumed that the dentist’s education had provided enough training to understand and support individuals who struggled attending dental examinations. For those parents confident enough to ask for minor changes to meet their child’s individual needs, they reported that these requests were often met with reluctance. Therefore, despite their best efforts, dental visits were largely unsuccessful.
Dental teams that took time to respond flexibly to parental requests for support had more positive experiences. Check-ups were also positive when the whole dental team became involved in the care of the child. This was demonstrated by one dental team who discovered a boy’s love for washing machines. There was a washing machine at the practice so the receptionists would take him to see it if the dentist was running late, or after his check-up.
Helpful strategies included providing information on what to expect before a check-up and making thorough notes so parents did not have to repeat themselves at every appointment. This continuity before and after a check-up was really valued by participating families.
When we express the likes, dislikes and needs of those in our care, we find that we can make allies.  Sure, there are people and places that lack flexibility.  It’s up to us to seek out and open up the practices that are supportive.

 

I’m a little teapot…

Melissa and I just bought  this whistling teapot:

20180308_072440

Her social media comment says it all.

The autistic kid moves, the tea kettle whistles after 22 years

We’ve chronicled some of the sensory issues that bedeviled Joey and through him the whole family.  We had to banish whistling teapots from our home for 22 years because the sound distressed him to the point of meltdown.

Hey, it wasn’t all bad.  I mean, I had plenty of opportunities to avoid cleaning the house because the sound of a vacuum put him over the edge.

But the little blue teapot is another sign of our lives being liberated from the concessions, adaptations and drudgeries of care giving.

Hang in there, wherever you are on the care giving journey.  I’ve been slogging through the Biblical Prophet Ezekiel.  The first 39 chapters are a gloomy tale of people living in exile, familiar life erased.

Then one day life starts to come back together.