Out with… with… I forget

So here comes the obligatory New Year’s post.  Although I think I neglected the compulsory Christmas post so I’ll cram them together.

Joey begins perseverating about Christmas presents – aka movies on VHS – in the summer.  We get mad and try to make him change the subject; Melissa makes him dictate a written list so at least some constructive interaction takes place; our eyes roll back in our heads…

presentsThen Christmas day comes, we wake him up for breakfast and presents, show him his loot ‘neath the tree, and he says…

“NO!!!!!”

and goes back to his room.

We eventually prevail upon him to open the gifts, which he does with grumpy histrionics before again retreating to his room without them.

Eventually, over several days, he begins watching his long desired movies and seems happy.

Well, this year we resolved (see that New Year’s hook?) to try a new approach, which was no approach at all.  We simply let him ignore the presents to see where his thought process would take him.  We offered them to him and then left them under the tree and waited.

Our older son and his wife flew in for the holiday, and we exchanged gifts with them a few nights after Christmas.  Joey seemed to get into the second gathering and opened his presents then.

Hypotheses include a) he wanted his brother there, although he did the whole “NO” schtick throughout the years his brother lived at home; b) he doesn’t want Christmas to come to a crashing end but wants to sustain the gift getting pleasure; c) oh, hell, I have no idea.

Here it is New Year’s Eve-day and I’m sitting here yelling at him to turn down the volume on the movies, which he’s enjoying.

I’m not big into resolutions.  But here’s a favorite scene that reminds me to be open to change, to quit pounding my head against autism or any other wall…

May 2017 bring you blessings, especially freedom from old ruts. May you have divine favor upon all that you offer.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come. (2 Corinthians 5:17 ESV)

Just when I thought I knew everything…

I got some pleasant surprises.

Last night we had a group of Dinka (South Sudanese) friends over for dinner.  We were a bit apprehensive, since Joey hadn’t met them before and unfamiliar groups can unsettle him.

Also, as we learned when he had a therapist from the UK, he finds accents amusing.  He starts laughing and mimicking them.  It cracked him up that the therapist, Mark, introduced himself as Mahk.  Joey couldn’t get enough of saying Mr. Mahk.  And laughing until he was short of breath.  So we wondered what he might do with African-accented English.

Anyway, Joey was fine with our friends last night.  He went on about his normal routines, didn’t stare or laugh, and wasn’t bothered in the least by the new people and voices.

Maybe he’s grown some more.  Or maybe there’s something calming about the Dinka – our dog didn’t even bark at these first time visitors, and she barks at long time friends and family.  She did, however, continue her cross-cultural dedication to mooching food and wanting her hindquarters scratched.

Another pleasant surprise showed up in a friend’s message on Facebook this morning.  chucky-cheese-adCheck this out…

That’s right, Chuck E. Friggin’ Cheese!  Sensory overload central, even for the neurotypical.  I mean, it turns parents autistic after five minutes of exposure, right?  This is amazing.  I can’t imagine how they pull it off, but good on them for caring in this way.

We are in the season for surprises and gifts, it seems.  May many wonderful blessings come your way.

The people who walked in darkness
have seen a great light;
those who dwelt in a land of deep darkness,
on them has light shone.  (Isaiah 9:2)

The Usual Suspects

Care giving includes stuff getting destroyed.  As we say 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 can’t keep a DVD player… we gave up on taking vacations…

The latest loss is a cheap pair of reading glasses I kept on the nightstand.  I need readers and keep them in convenient places.  Last night I left my laptop on the bed to go have dinner and the readers were sitting on the keyboard.  When I returned I found the laptop closed and this was inside:

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Mashed readers.

This now becomes an investigation worthy of SVU (or is it SUV?)  or CSI or one of those other crime shows.

Joey smileyI mean, it could be this guy.  He’s known to walk into rooms and turn lights or contraptions on or off because… because autism.

 

 

 

lily-christmas-2015

 

 

Or it could be this malefactor, who likes to jump on the bed but is now old and feeble and has to climb up via a bedside chair, which would put the laptop right in her destructive path.

 

 

sophia-cat-toy

Or this other bed (and everywhere else) sleeper who is so fat that she could have sprawled out and rolled over the laptop.

 

 

Guess it doesn’t matter.  They’re all objects of our affection.  Even if they’re a bit out of focus for me this morning.

Party. Where you are.

This week features the Happy Holiday Progressive Blog Party at CareGiving.com.

The internet provides one way for tied up, tied down caregivers to “get out” and find fellowship, fun and support in the wider world.  The blog party will help you find a variety of caregivers in different situations who share their companionship and insight via the internet.

There are prizes to be won, including a copy of our book.

If you’ve not been here before, welcome!  We’ve been blogging since August 11, 2012.  Quite the memories scrolling back through the years.  Hope to add some with you, from right where you are!

Party!

Family caregiver? You can jump into this online party in the coming week. Great blogs to discover, new friends to make, prizes to win… all from the “comfort” (yeah right) of your care giving location! Great way to take a daily break, and hosted by a site with tons of resources:

A copy of our book will be one of the prizes!

Close counts.

“Close only counts in horseshoes.”

That’s not true. It is a perfectionist statement that might apply well to accomplishing specific tasks, but it isn’t the measure of a life.

Jesus complimented his followers,

You are those who have stayed with me in my trials, and I assign to you, as my Father assigned to me, a kingdom, that you may eat and drink at my table in my kingdom… (Luke 22:28-30 ESV)

On first read, it sounds like he’s saying, “You lot got it all right, you met all of my criteria and I am promoting you.”

Except look at what “staying with him” looked like just a few seconds earlier,

A dispute also arose among them, as to which of them was to be regarded as the greatest. And he said to them, “The kings of the Gentiles exercise lordship over them, and those in authority over them are called benefactors. But not so with you. Rather, let the greatest among you become as the youngest, and the leader as one who serves.” (Luke 22:24-26 ESV)

They stayed with him, alright, and demonstrated impressive ignorance of his example and teaching.

Not long after he assigned them a place at his royal table, they all ran away from him in his moment of greatest challenge.  He had to go regroup them and even that was met with doubts and confusion.

horseshoesBut staying close was enough. They could miss the point and mishandle the situation and still “count.”

Caregivers learn by trial and error – lots of trials handled with lots of errors. But we count. Loving effort – that which keeps us close – is what matters to those in our care.

And the One who assigns us the work is the One who assigns a reward, not because we earn it but because He stays close to those in His care – to us.

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Know someone who is just beginning the care giving journey?  Our book might be a good Christmas present.

Assume Everything

There was a spat in Christianity’s early years. Some understood Jesus to be a god-man like those of ancient myths, wearing flesh like a costume but really a divine tourist when all was said and done.

But the view that prevailed and remains is more mysterious. It says that Jesus is both the Holy God and fully human. He enters our humanity holding nothing back. The slogan of those who argued for this was “That which was not assumed is not redeemed,” that is, if Jesus didn’t share every aspect of our humanity (except for sin), then humanity cannot enter the kingdom of God with him. Christmas is about God assuming our human nature so that our human nature can be completed in eternal life with God.

In this beautiful 4 minute video, special needs children and their caregivers put on the familiar church Christmas pageant. With them, we can realize that special needs and caregivers’ fears and shortcomings are all part of what Jesus came to redeem. We all matter to God.

Open Door Policy

No, not a political rant or a lesson on office management.

Joey got up for a drinky in the wee hours and left the refrigerator door open.

One of the overlooked costs of care giving is broken stuff.  Appliances.  Vertical blinds.  You name it.

Or that smashed, irreplaceable souvenir mug from the bed and breakfast where you honeymooned.  Priceless, as the MasterCard ad gushes.

But I suppose there were upsides to the ‘fridge left open (I don’t think he blew the compressor, btw, it seems to be working OK now.)

  • The butter for his morning toast was pre-softened
  • The cool air mixed the the house’s central heat to make the kitchen a perfectly balanced garden spot
  • Our electrical provider is enriched just in time for more holiday shopping and will probably give Bob Cratchit half of Christmas off.

I suppose I should add one of my fine photographs to this post.  But looking into someone else’s ‘fridge seems kind of intimate, don’t you think?  I mean, why see the milk if you don’t own the cow or something.

Anyway, back to the morning routines.  Need to plug in the Christmas tree lights, get the crockpot going, etc.  At this rate, Cratchit might get the whole holiday off.