Isolation

The first book signing for Raising a Child With Autism is history, but this isn’t about the book.  It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet.  My prayer list keeps growing with their names and needs.

One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges.  They care for a son with autism.

We noticed that people stopped inviting us to stuff.  I think they’re afraid of our kid.  My wife is at home alone with him more and more.  She’s really feeling isolated.

All kinds of care givers suffer in similar situations.  People don’t invite you out or you find it too much of a hassle to go.  Competent babysitters or respite providers are hard to find.  The person in your care is agitated if you go out on your own, but resists going along when invited.

Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season.  It begins with people in isolation,

2012-12-22_09-13-56_966When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…

But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.

Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”

We weren’t able to attend an Easter service.  I had to work and Melissa had to – did you guess? – be home with Joe.  Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.

There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula.  But I suppose it begins like most efforts to end isolation, with a conversation,

And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

We are blessed this Easter.  Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.

We are grateful to all who read what we share, who leave messages and otherwise communicate with us.  You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.

May God’s peace be always with you.

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)

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!

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.

 

Sleeping on the couch

No, Melissa and I are not having a fight.

Joey moved out to the couch this week.  He does this every year when the Christmas decor goes up.  He likes to snooze by the light of the Christmas tree.  I blogged a picture of that two years ago.

The rhythms of family life are meaningful.  Autism craves order in both macro and micro forms.  So not just daily routines but seasonal and annual cycles can be our friends.

Another important aspect of Joey’s annual relocation is that physical environment, even with some quirky changes, can make a difference in the quality of life for a person with autism.

Here’s a useful page from Australia about Workplace Modification.  Practical adaptations, such as work table heights, wider aisles for wheelchairs and the like are obvious (or should be).

But so are aesthetic or other tweaks that make the work space more enjoyable.  One agency we visited here had Christmas lights rigged to come on each time the worker completed a particular task.  (Note: such adaptations are highly individual, because the flashing light that gives pleasure to one person can be a seizure trigger for another).

20161129_121516

Not Joey’s actual feet.  Reenactment by a trained professional.

 

Holidays are times when most of us modify our homes.  They are an opportunity to discover changes that make life more comfortable and pleasurable for those in our care.

 

 

Truth and fiction

Reading is one of my pleasures.  If you’re a caregiver, it is important to squeeze in times of refreshment.  Holidays, right?  Yeah, right.  Ha ha ha.

In stolen moments I’m  reading a well researched and moving historical fiction called Saratoga Letters.  It’s set in the American Revolution and the present, and has captivating characters, suspense, romance and all that good stuff that caregivers sometimes forget exist.  (It has action, too, but maybe we have too much of that?)

Yesterday I came to a passage that definitely leaned more toward truth than fiction.  It will ring all too familiar if you’re a caregiver:

There was too much work to be done.  None of the caregivers took time for rest.  Neither would she.

Bleary-eyed surgeons and women bumped into each other as they tended the wounded and ill.  Someone brought ale for the staff, but Abigail wasn’t certain who it was.  She merely guzzled the offering and returned to her tasks.  She forced herself to keep working…

Yes, it’s a military field hospital.  But doesn’t it have all the realities in which caregivers are immersed for long seasons?

  • 20161122_132143

    Tom the Caregiving Turkey on a typical day.

  • Too much to do
  • Lack of sleep
  • Tiredness leading to mishaps (bumping into others, forgetting appointments, dropping/breaking stuff, burning meals, etc. etc. etc.)
  • Losing awareness of others who aren’t the focus of our care
  • Food and drink gulped down on the run
  • Working when body/mind/heart/spirit want to shut down.

We are very blessed that friends are having us over for Thanksgiving.  It is so wonderful to be with people who “get” our son and who are giving us a fun and refreshing evening.

But we know that so many caregivers are going to struggle, because holidays can be a war zone every bit as chaotic as that Revolutionary field hospital.

If you have a chance to check it out, here’s Denise Brown’s helpful Holiday Survival Guide page at caregiving.com.  It is a great site all around and we hope that there’s something there that makes your Thanksgiving give to you as you give to others.