Ahh, the holidays

A helpful blog called “Autism Daddy” shared a parody of a famous Christmas poem, by a woman active in advocacy for people with autism and their caregivers.

2013-03-02_11-17-13_925I’ll just drop it in here for your enjoyment and reflection. Whether you are a caregiver trying to host a holiday gathering, or a guest in a caregiver’s place, hope this provides some empathy, laughs and greater enjoyment of the time together.

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

Hoodie is sensory overload; frozen air and needles, not so much.

This is a short follow up to an earlier post, in which I groused about Joey’s resistance to headgear, gloves and other accessories that could keep him safer in the winter.

Joey tunaToday, he had a blood test. It’s a routine thing, just checking various levels and factors of his medications.

As you see in the picture, he came out no worse for wear. He enjoyed a tuna foot long to break the blood test fast. In fact, he’s the least needle-phobic member of our family. He sits there calmly and watches the needle go in and the blood go out – stuff that would make me woozy.

So I wonder if there is a blogger on the autistic planet, grousing about how caregivers wear hats and gloves but don’t do needles because of our sensory issues.

Autistic Theology 101

Ah, the first snow is here. It’s pretty stuff, not too heavy and most of all not wind whipped.

IMG_20141115_081206_935With the arrival of winter weather, several things happen. As you can see in this picture, our signature overgrown dog house (same one at the top of our blog) sits in ever degrading sadness, annually reminding me, “Damn, you let another year pass without tearing me down.”

And Joey makes a mental connection with the big winter holiday, Christmas. He begins to negotiate for presents. “Good boy with mom and dad soon there will be presents.”

He’s not hard on the wallet. He usually wants a movie or two. But years of “reinforcers” – pleasant things given as encouragements to good (or at least “normal,” which in the jargon is called “typical”) behavior, have him hard wired for what would horrify the Protestant Reformers and their descendants. He’s trained to justify himself by good works. He thinks he has to earn gifts.

So this winter, I’m trying to introduce Joey to the Christian concept of “grace.” In our church, the short definition says,

Grace is God’s favor toward us, unearned and undeserved

It’s not that we’re “good boys and girls.” It’s that God is good and loving and reaches out to favor flawed, incomplete humanity. As the New Testament puts it,

…he saved us, not because of works done by us in righteousness, but according to his own mercy… (Titus 3:5)

So when Joey says, “Good boy with mom and dad soon there will be presents,” I’m responding with,

“There will be presents because mom and dad love Joey.”

It’s Autistic Theology 101. Actually, it’s probably Everybody’s Theology 101, because it is something we all need to keep learning. Caregivers need it. We’re so aware of what did/doesn’t/won’t get done, and we feel that sense of failure and hear a sneaky voice of condemnation that says, “IF you were good boys and girls, there would be better results.” So we need to understand that our value is a gift, given in love, and so is the fruitful work we do and grow in over time. One of the lessons that our church hears at Christmas is,

For the grace of God has appeared, bringing salvation for all people, training us to renounce ungodliness and worldly passions, and to live self-controlled, upright, and godly lives in the present age, waiting for our blessed hope, the appearing of the glory of our great God and Savior Jesus Christ, who gave himself for us to redeem us from all lawlessness and to purify for himself a people for his own possession who are zealous for good works. (Titus 2:11-14)

I’ll remember to demolish that broken down dog house one of these summers. Meanwhile, my value and dignity are not resting on that sorry structure, but on the favor of the gracious God who looks at my broken, forlorn state and patiently brings me along.

Isn’t freezing a sensory issue?

Folks living on the autism spectrum have “sensory issues.” They don’t like certain sensations or textures, so they won’t wear, handle, eat or otherwise come in contact with certain stuff.

Our lad Joey doesn’t like headgear of any kind. Never has. Hats, hoods, headphones/ear buds – nunna that stuff.

We’re here under that Canadian air that’s settled over the USA. Our temperatures are single digit, and even some subzeros when the wind blows. It’s way too early for that, and we’re all whining.

I deck Joey out in layers for his short trip out to catch the bus. I slip a sweater over him and then put a coat on over that. But he won’t wear a hat. And today I went with a hoodie as the sweater layer, but he would not put up with the hood (does that mean it’s just an “ie”?). He just waved his hand in an angry arc and swept it off his head.

How is letting subzero air bore into your head not a sensory issue?

Did I mention he won’t wear gloves or mittens, either?

Dr. Who moment, minus the time travel

I made a run to the market this morning.

As I pushed my cart somewhere between bread and frozen stuff, a store manager came up to me.

“I haven’t seen your ‘helper’ with you in awhile. I hope he’s doing OK.”

By “helper,” he meant Joey, who used to accompany me to the store. But in his teenage/young adult years, he’s taken to sleeping in on the weekends, which is just his age, not autism. So now I shop solo.

“He’s fine,” I explained, along with the stuff about his late sleeping.

The manager, to whom I’d never spoken before today, expressed his pleasure at that news, then went into an extended riff on what a good dad I am.

I held it together, but I could have shed a few tears of joy. The last month has been less than pleasant for me – in fact, some days were miserable. We were clubbed with ridiculously high, out of budget bills for medications and home furnace repair. In other news, folks with whom I’d been on good terms became unhappy with me and were arrogant and unkind in expressing it. Work sucked for about a week. And that’s for starters. I could share TMI but some of it is too painful to type.

So this stranger, basically saying, “Hey, over the last couple of years I’ve been watching you, and you are a good guy” was like medicine. Or at least a soothing shot of Tequila (good stuff only, I don’t drink swill).

Good spiritual advice is to never, ever get so hung up on compliments that you start to believe your own press releases. But I didn’t take this praise unrealistically – I know my failings as a dad but I am also aware that I’ve done things and endured in situations that send plenty of other men running out the door. And Joey’s happiness and well being is something to which I’ve contributed considerably.

I’ve never watched the show Dr. Who (that confession causes a number of my friends to roll their eyes), but someone recently shared this clip from the series. The Doctor is a time traveler, and in this scene, he’s fetched mentally tormented artist Vincent Van Gogh from the past and taken him to a present day museum display of his work. What happens is… well, watch the video clip. It’s just a couple of minutes long:

We all need affirmation. It is a blessing when it comes in some out-of-the-blue intrusion of grace.

I believe that life is full of dress rehearsals for eternal things. Coming up a few Sundays from now, many churches will hear ultimate words of affirmation,

His master said to him, “Well done, good and faithful servant. You have been faithful over a little; I will set you over much. Enter into the joy of your master.” (Matthew 25:21 ESV)

The great and eternal affirmation will come for those who did “holy” things unknowingly while muddling through “normal” stuff. Grace, out of the blue, affirming that in ways known but to Him, God made us vessels of his grace to help others through the painful world that is passing away, and toward eternal joy.

The cure for bed head!

We keep Joey’s hair short, but that doesn’t prevent him from sporting an array of bed head styles.

He has a warm, soothing bath at the end of most days. From there, he tends to dive into bed and roll around until he gets comfy. This means that his neatly combed but still moist post-bath hair gets shaped into all sorts of formations, none of them based on order or symmetry.

This morning, his hair is PERFECT. No tufts spiking out, just a tidy ‘do combed from a subtle part in the middle.

How did we achieve that? Was it new product? New technique? New comb or brush?

Nah, we just skipped sleep.

Joey was up, chuckling, quoting movie lines and singing for most of the night. His post-bath hair didn’t get thrashed around on pillows for several hours. So bed head never developed.

Don’t know what that means for mom & dad. Likely more bags under our eyes. Certainly Melissa’s recent trip to the stylist won’t be representin’. And I don’t have any hair for bed head anyway.

But Joey caught his bus lookin’ mighty fine.