There’s no place like something something

Friends hosted us for Christmas.  The trip to their house meant a ride on quiet country roads, which made the holiday that much more serene.

Before delving into the autism antics, let me (Tim) say that being hosted  after years of playing host is a blessing beyond words.  This year all kinds of accumulated stress and damage caught up with me.  Did I mention that sometimes care giving stinks?  I’m healing up.  And to receive the kindnesses of others is great medicine.

OK, so we have a great Christmas morning with our older son and his wife, take the day slowly and gently, and then head for our friends’ place at a civilized time in the afternoon.

We arrive, and Joey starts to show that he feels every bit at home with these folks.  This is big, as people who live with autism don’t always take to new places and new folks.  What does autism-feeling-at-home look like?  Well…

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He gets out of the car, doesn’t wait for us to walk him to the door OR for our hosts to open it.  He just walks in (shutting the door on us, btw), throws his coat over a banister, kicks off his shoes and starts walking around like he lives there.

Later, he would spot a light on in a guest bedroom where one of our hosts’ guests was reading a book.  Joey, just as he would at our house, decided he didn’t like the light, walked in and turned it off.

When someone else turned the light back on, he flicked it off again, took that person by the arm and “guided” them out of the room.

That situation under his control, he headed for the kitchen and ate most of an unprotected platter of meat sticks.

He walked several miles in circles in a room he liked, ran movie lines (I think he was into Disney’s Pocahontas this time, and our Christmas was all the jollier hearing “You killed him!” bellowed at regular intervals) and, in his ultimate autistic gesture of holiday sharing…

…he passed through a room where Melissa was meeting some new folks.  That family’s dad was holding a can of Dr. Pepper while he chatted with Melissa.  Joey walked by and, without breaking stride, plucked the soda from the guy’s hand as if lifting it from a waiter’s tray and walked off guzzling it.

Everybody had a laugh, which tells you a great deal about why Joey feels so at home there.  While there’s no such thing as a 100% autism-safe house, there are homes that are autism friendly.

Caregivers find these havens precious indeed.

Quick! While he’s not here! (UPDATED)

No, not a riff on the new parent thing about “Shh!  Let’s have some fun while they’re asleep!”

Forget about intimacy – when your grown kid with autism is out of the house it is time to…

20151223_115011WRAP HIS CHRISTMAS PRESENTS.

Forget about saying, “Joey, don’t go in that room.”  That doesn’t work.  Forget about trying to wrap while he’s asleep, because he can be not-asleep at a moment’s inconvenient notice.

The time is NOW!

That said, we need to get wrapping presents instead of unwrapping each other… but Melissa and I wish you a very Merry Christmas and pray that it will be day with some blessings for those in your care and for you.

UPDATE: His bus usually arrives at 2:30 or later (that’s 14:30 for the rest of you) but today it was 2:15, literally less than a minute after we cleaned and hubby moved unused supplies to the hiding place downstairs. It is not that he believes in Santa, it would be that he would know that the presents are here and he would find them and open them or worse, bug us thinking that if he kept talking about it, we would give in and give them to him. Of course, we would not, so his excitement would keep him awake, running up and down the hallway, clapping all night until Christmas, when he would be too excited to open them once the time came. Ouch.

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Printer Error

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In a messy corner of a messy room sits our little printer/copier thingy.

There appear to be efforts at origami atop and around it.

For our son Joey, living with autism means finding tactile comforts that connect him to the world outside of his unique inner workings.

Crumbling and waving papers is one such means to connection.

Which means we can’t leave paper in the copier, ready to zap out the next Very Important Document we need.  We have to hand feed the machine a sheet at a time, lest any available paper wind up like that in the picture.

Also means we have to keep the paper hidden in some inconvenient and sealed up place.

So we are the printer error.  You know, like in airplane crash investigations?  Mechanical error is ruled out… the printer didn’t mangle the paper.

All blame is with those claiming to operate the machine.  Or anything else in our house.

Wasted Time

Eagles at Denny

Between sets at The Eagles’ Concert in Sioux Falls, SD

The Eagles came through our town a few months ago.  My wife and I enjoyed their audible tour of our younger years.  They were the first band I went to see live, during their Hotel California album tour in 1976.

One of the songs from that album came to mind this morning.

It is typical of midlife to indulge regrets and “might have beens.”  A cruel business, that – especially if we judge ourselves by events and consequences we can’t alter.

Hang out with care givers and you will hear some of this. Actually, quite a bit of it. We lament lost years, opportunities waived off, trips never taken, relationships broken or never engaged in the first place. “If I had it to do over” is more of a hiss than a musing.

It is the age old fight between flesh and spirit or, as an old friend puts it, between selfishness and sacrifice. Judged from our culture’s point of view, where self satisfaction and metrics of “fulfillment” are everything, our lives appear to be wasted time.

We might not value what we’ve done, and view it as irritation and deprivation.  And the world around us will amplify those thoughts.

Another perspective is that what we do and what we give up have value because they are part of a much bigger plan and purpose than puny human perception can understand:

LORD, you will decree peace for us, for you have accomplished all we have done.  (Isaiah 26:12 New American Bible)

Leave open the possibility that our care giving is the Creator’s own touch for those in our care.  God has accomplished much through us, to the good of those who depend upon us and toward preparing us to share in peace that does not come and go with circumstances,

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.  (Jesus, in John 14:27, King James Version)

Or like The Eagles say,

And maybe someday we will find , that it wasn’t really
Wasted time

That rings a bell

Here’s our lad Joey a couple of winters ago, prompted to put some money into the Red Kettle of bell ringer and local Sioux Falls radio celebrity Greg Belfrage.

Belfrage

As we said, Joey was prompted.  He didn’t feel a surge of charity.  He has little if any comprehension of charity or, thankfully, the ugliness of its antithesis, greed.

But seeing this picture again (it was one of those Facebook reminder thingies) rang a bell.  For caregivers and those we support, there is so much generosity to acknowledge.  We’ll take a quick stab at it, but need to confess that we’re not through our morning caffeine.  So hopefully some of you can add comments pointing out others for whom we should be grateful…

  • The taxpayers of our nation, state and city.  There are federal programs that ensure school and other services for people with special needs. The schools themselves operate via an array of state, local and federal funds.  There are various programs that help pay for Joey’s health care – and his medications alone would impoverish us without the help.  City transportation and emergency service folks make our lives better, with both daily needs and in acute situations.  These and so many other people and services are funded by tax dollars.  We know that paying taxes isn’t something we do with charitable joy, but we are grateful for all of our fellow taxpayers who are vital parts of family care giving.  You make Joey’s life better and our burden lighter.
  • Community agencies.  We should all be amazed by the elaborate and effective agencies that caring people labor to create and operate for the good of others.  We live in a city with a number of them, and we could type for days about the one that is Joey’s primary support.  There are groups that host camping for people with special needs and others that give solace and support to care givers.  So many people investing their time, talent and treasure in making our days better.
  • Health care providers.  From management of meds that control Joey’s seizures and aggression to emergency rooms that got him through some terrifying moments to techs that can win him over for teeth cleaning, another list that we could type for days.  More good folks than we can possibly name, but we’re so grateful for all of them.
  • Businesses and professional folks.  Stuff that seems humdrum to others is solid gold for people with special needs and their care givers.  We’ve had a sweet person cutting Joey’s hair for several years.  Can’t tell you what a relief she is.  There are restaurants that make Joey feel at home and businesses that hire people with special needs.  Others donate some of their profit to support schools and community agencies.
  • The internet community.  There are all kinds of supportive people just a click away.  (We hope our blog serves some of this need for others).
  • Friends who make Joey’s life more fun and who care for us as we care for him.
  • Neighbors who understand and do things like clear the snow off of our driveway so that one more chore is out of the way.

So much of our blogging is about the mishaps and mangled aspects of life.  But the picture of Joey and the bell ringer is a reminder that all kinds of people are making our lives much better and more complete.  Hope that we’ve rung a bell and that you are blessed with awareness of many such people around you and gratitude for them in your heart.

 

Joey, The Christmas Trump

Presidential candidate Donald Trump asserts that he should be elected because he’ll be the best at sitting down to negotiate with foreign leaders.

Our son Joey has a unique negotiating method.  He uses it every year in the run up to Christmas (the “holiday” shopping orgy).  We fall for it every time.

He lists the presents (OK, the movies) he wants.  He talks of nothing else for weeks (called perseveration in the autism biz).  It goes like this (parents in quotes, Joey in italics),

“Good morning, Joey.”

Soon there will be (insert name of movie).

“No, your language is, ‘Good morning, Mom.'”

Soon there will be (insert name of movie).

“Joey, put your juice back in the refrigerator.”

Working for (insert name of movie).

“Joey, time for a bath.”

Working for (insert name of movie).

So we dutifully order said movie.  Except that Joey, ace negotiator, forgets about that one about a week before Christmas and demands a different movie.  With great agitation in his voice.

This year Melissa tried a new tactic.  She sat with Joey and cheerfully wrote down a list of movies he named.  She’s been showing it to him as a reminder, and he smiles as he’s assured that these titles will show up at Christmas.

Of course here we are about two weeks from opening presents and he’s got a new, must-have-at-all-costs movie he wants added.  Like Trump, he’s unbending in his demand.

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And because Amazon.com* delivers stuff quickly, we cave in.  Better that than a grim Christmas with petulant Joey.  Which might happen just the same.

Such is care giving for families living with autism.

Oh, and his birthday comes in February.

*If you shop on Amazon, consider using Amazon Smile.  You can direct them to donate 5% of your purchases to an organization of your choice.  Great way to support the folks who support you in caring for your loved ones.  We direct ours to the folks who provide Joey’s programs.

No complaints. Well, fewer.

Caring for someone who lives with autism generates its share of stress and challenge (duh… hence this blog).

But it struck me the other day that our son Joey does not provoke some of the stress that one reads about in many other care giving situations:

  • He seldom complains (of course he’s now 21 and he’s come a long way – we can remember his childhood when frustration led to violent meltdowns).
  • He does not blame, shame or otherwise emotionally batter his caregivers.
  • He doesn’t sit around theorizing about all that could go wrong.
  • He is not as emotionally detached and isolated as some who live with autism.  He gives us a considerable amount of affection.  And humor, some of it intentional.
  • He no longer asks for superhuman effort (again, there was a time… ) These days his list of demands is short and usually realistic.  Like pepperoni pizza on Saturdays…

Joey eating pizzaI bumped into the idea of “giving thanks by mental subtraction” today.  Identify one thing for which you are grateful, then briefly imagine life without it.  It amplifies the awesomeness of that good thing.  There are a lot of those blessings with Joey.

Weird as it sounds, being with him can be respite from some of life’s other stresses.

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Check out some of these other care giving sites during this week’s Holiday Progressive Blog Party.

Hello Fellow Care Givers

Welcome to the Holiday Progressive Blog Party, sponsored by caregiving.com ! As a way of saying “Welcome and Hello” to visitors here, we’ve reblogged the very first intro post from our blog, which appeared in 2012.

Visit all of the participating blogs this week.

Sometimes Care Giving Stinks

If you are reading this, you are probably a care giver or you care about someone who is.  And “stinks” probably got your attention.

We are a  family of people giving and getting care.  We won’t bore you with all the details now.  They will come out as we post stuff here.

We’ll be sharing stories and thoughts that help us give and receive care.

We want to mix hope, tenderness and an occasional laugh with tales of frustration, hard work and bodily waste.

We will look forward to your comments.  Hopefully, we can grow into sources of wisdom, comfort and encouragement for one another.  The things you share will likely inspire some of what we write here.

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Care giving blog party!

caregiving.com will sponsor a blog party this coming week.  (December 6th is special to us – it’s the Feast of St. Nicholas, a bit of a caregiver in his own right.  Melissa and I met at church named for him and our son’s middle name is Nicholas.)

Anyway, a progressive party is where you go visiting from place to place (appetizers at Joe’s house, main course at Wendy’s, dessert at… well, you get the idea).  It’s a way to mix and mingle.

In this case, it is a chance to visit care giving blogs, give and get some encouragement, win free stuff (well, free to the winner – blog hosts will be donating the prizes!)

More this Sunday – see you then!