In the winter we can build a Joeman

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So there’s our walkway, front yard and street.  Can’t tell them apart?  Well, you can use the bird bath and the snowman in the middle as handy reference points!

OK, maybe not.

This is today.  Like a good dad, I went out and shoveled a path down the driveway so Joey could come up to the garage door and not have to wade through knee-deep snow.

I was taking off my boots when the dog barked, letting us know the bus had arrived.  Before I could get my wet things off, Joey had come up the path I’d cleared…

…and hung a left to trudge through the knee-deep snow on the NOT shoveled path to the front door.

Lots of nice snow glop on the wood floor inside.  And he has wet, cold feet.

Never, ever, ever, ever change the patterns for a person with autism.  Even when you’re trying to be nice.  In the snow.  In freezing temperatures.

Thanksgiving Guests

For the first time in many years, our family is accepting an invitation to another family’s Thanksgiving table.  We’ve cooked and hosted for many years (I think most of our 25 years as a married couple), but this year an offer has come and we are ready to receive.

As many care giving families relate, it is easier to stay home.  Traveling isn’t always easy for people with special needs; being in a strange place isn’t easy on them; eating unfamiliar foods (or familiar foods prepared by unfamilar hands with unfamiliar ingredients in an unfamiliar kitchen) isn’t easy either.

And if it ain’t easy on the person in our care, it ain’t easy on care givers and it ain’t easy on those who would dare to host us.

But we have some sweet and hardy friends who are giving this a whirl, and this year it means a great deal.  It’s been a year of extra efforts and extra exhaustion for Melissa and me, and to receive care is a blessing that’s hard to put into adequate words.

I want to praise all out there who are spending the holiday with families like ours.  Whether you are the care giver staying put to make it as pleasant a day as possible for those in your care, or you are someone providing a day of respite and refreshment to a special needs family, you are part of something more awesome than you might realize,

(Jesus) said also to the man who had invited him, “When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. For you will be repaid at the resurrection of the just.”  (Luke 14:12-14 ESV)

“Thank you” doesn’t seem like enough to say, but those are my meager words.  I pray that you will receive greater, glorious praise at the eternal banquet that Jesus will serve.

 

Thanksgiving Dinner Plans

Health limitations, sensory issues, simple childlike stubborness… for any number of reasons, feeding those in our care is at once simple and aggravating.

Aggravating because we go to much trouble to spread a table with stuff they’ll ignore… simple because we know there’s just one that has to be served.

Saw this on the Autism With a Side of Fries Facebook page.  It’s right on target

Thanksgiving Food

Our man Joey likes a corn casserole that Melissa makes.  That’s all he needs on Thanksgiving.  He eats a bunch of that and goes off to watch movies.  He’ll even eat it for a couple of days of leftovers, just like the rest of us do with all the other Turkey Day fare.

For the first time in a bunch of years, we are not cooking Thanksgiving dinner.  Some wonderful friends invited us over and I (Tim), before any debate could ensue, said “Yes!  Absolutely!  Thanks be to God!”

But we ARE making the corn casserole to bring with… Joey wouldn’t have it any other way.

Just found out that Melissa needs a medical procedure on Wednesday… so today we have to figure out how to work in cooking the casserole between that and my work schedule.  But there will be corn casserole, dammit!

Language skills

No, not for them, silly.  For us.

There’s plenty of quality stuff out there about building up the language skills of people who live with autism.  But what about those of us who live with them and care for them?

Living with our son is like taking several years of foreign language in school.  You autism for dummiesbecome proficient – you think.  Then you travel to the country where it’s spoken and you run into regional dialects and accents.  Yes, you learned the formal language.  But you can’t communicate with the natives.

So today Joey threw open our bedroom door at zero dark thirty.  Haloed by blinding light from the hallway behind him, he said, Mom has to clean up the floor.  In my understanding of his language, that means

a) I’m asking for Mom because she will be patient and tender whereas dad is a grumpy jerk and will upset me;

b) I had a bathroom accident.

Being a chivalrous kinda guy, I tried to let Mom sleep.  I rolled out of bed and into the hallway, my arm flailing for a switch to swat off the light.

I endeavored to be patient and tender in my affect beyond that.

Sure enough, there was a towel on the bathroom floor.  Joey will drop a towel, like a football ref throwing a penalty flag, on an “accident.”  But the towel was dry.  There was no accident.  He’d just put it there to keep his feet warmer on this cold morning.

Joey, where is clean up the floor?  (See, I’m pretty good at his language).

It’s clean up the floor for the bed?  (He inflects statements as questions when responding to questions.  I hope you’re taking notes).

Now my patient and tender was just about to leave the building.  Had he wet the bed?  He hasn’t had a bed accident in ages.  Grabbing up piss soaked bedding and doing loads of laundry on a cold dark morning did not appeal.  Remember, friends, this is all unfolding before I’ve had even a whiff of coffee.

But the bed was dry.  The blankets were dry.  What the…?

It seems that the fitted sheet hand come undone at one corner. That’s right, in his language clean up the floor is now a regional colloquialism for the bed’s unmade.

The stuff they don’t teach you in care giving school.  Sigh.

 

A catered affair

Melissa, Joey and I had a wonderful evening last Saturday.

I’ve tried to keep it out of this blog so as not to weird people out, but I’m an ordained minister in the church. For the moment. More about that later.

Claudia Tim JoeyBack to last Saturday. I baptized some good friends’ recently adopted daughter. After a joyful service, during which Joey decided he didn’t want to sit and came and stood by me like some kind of test proctor while I was preaching (the church was packed but they all rolled with this just fine), we went over to our friends’ home for a celebration.

It was a big party, as the new mom & dad both come from large families, have lots of friends, employees and professional peers.

Food and drink were catered. And – I get misty eyed relating this – our friends took the trouble to have the caterer prepare a pepperoni pizza just for Joey. And they had cans of root beer for him amidst the wine selections.

Joey found a comfy spot on a couch and didn’t want to go find a table at which to sit. So the caterers actually took the trouble – while serving over 100 guests – to bring him plates of pizza where he sat. Melissa helped him balance things on his lap (and hers) and he was a happy lad, as you see here. Joey smiley

The kindness of our friends, the caterers and everybody else that night was a precious gift to us. Last baptism I’ll be doing at that church. Or maybe last one, period. It was a positive closure for our family.

I’m stepping out of the pulpit. Don’t know if that’s for awhile or for good. That’s something about which God and I need time to talk.

It’s enough to say here that I’m emotionally run down. That’s putting it mildly. Good care giving requires the heart and churches can drain (or cap, or poison) the emotional well.

A bit scary right now, of course. Needing to overhaul finances, seek new income, etc. No crisis of faith – I’m still praying and God seems as close and loving as ever. But your prayers are appreciated as our family goes through all this change.

We’ll still be blogging here, because care giving stinks sometimes but is in our hearts always.

We all scream for…

Nah, not ice cream.

A recent job change has me (Tim) in a setting with high public contact.

That means moms and dads with kids. Kids in tow, kids out of control, kids asleep, kids doing all the stuff kids do.

Last night one such kid emitted a scream. Upon reflection, after my heart slowed back to a normal rate and my ears stopped ringing, I identified it as a scream of indignation. Mom and/or dad didn’t do what the kid wanted, therefore kid expressed rage to the universe.

I wonder how many times our son Joey shook the cosmos.

Melissa remembers a time when he let out high pitched shrieks in the supermarket, just to test his volume. And she remembers people with hearing aids buckling at the knees as they reached up to cover their agonized ears.

I remember a time when we missed a flight (NOT Joey’s fault, it was the airport van guy’s problem). Joey hated the sterile waiting areas of the terminal. Then, he lit up when he saw a Burger King sign… only to melt down when it turned out that the food court was under construction and not open.

He ran away from us, made angry noises, and ultimately swatted a styrofoam cup full of soda out of the hands of a lady coming out of a terminal bar. I was just able to stammer out, “Sorry…autism…uh…” and she gave some grudging forgiveness of the assault.

I wonder if being a care giver has made me any more charitable toward others? After my reaction to last night’s screamer, I doubt it.

I think care giving’s just left me more uptight and intolerant.

How about you?

But he’s got a nice beat you can dance to

We were at an event in support of the community agency that is such an important part of Joey’s life.

Another family brought their daughter, Piper, also a child living with special needs. She gave this note to her parents, who shared it with the event organizer, who shared it with us:

piper

It was such a cute comment and accurate to Piper’s experience. True, Joey doesn’t like to chit chat (unless he really wants something – then he can be quite verbal). But he actually sang with Piper’s family when they played a tune he liked on a handheld device. We were amazed to see his usually aloof self with a big smile while he hung out with them. The catering staff were amazed that he sang on key.

Yes, sometimes care giving stinks. Sometimes it’s comedy gold. Sometimes it is precious beyond words.