Is there a doctor in the House?

Melissa and I enjoyed the series “House,” about a medical doctor whose personality indicated some placement on the high functioning but socially impaired spectrum.

The character was a diagnostician, given the most difficult cases that defied other doctors’ efforts to understand and treat.House M.D. - 11 Wallpaper

Sure could have used his help yesterday morning.

Joey was sitting on the couch, waiting for his bus. He’d been a bit non-cooperative about getting dressed and having breakfast. We was wiggling around and disarranging cushions to the point that I got off the couch in a foul mood.

The bus arrived and I went for the door, expecting Joey to follow me as usual. Instead, he went rubber legged and staggered toward the brick fireplace. It looked like a seizure underway.

I shot across the room and caught him. My voice went up – “Joey, are you OK? Are you OK?” My extra volume and agitation brought Melissa down the hall, and as it was early she was less than fully awake or fully happy with the noise.

I plopped Joey back on the couch.

“The bus is here,” Melissa pointed out.

“I know,” I contributed to no useful end.

I realized that Joey was alert, not at all appearing to be in seizure. “Joey, can you stand up?”

Up he jumped and we put him into his jacket and sent him aboard the bus.

Melissa and I, now both in less than chipper moods, held a diagnostic conference and agreed that he’d probably been sitting on his own legs and put them to sleep. That’s why he went lurching around the living room. No seizure. No need for loud or distressed outbursts by dad.

Dr. House always filled his white board with misdiagnoses before he finally recognized the real problem. So maybe I’m in good company. And maybe I’m on the spectrum, too. Or maybe I’m just a normal care giver, in over my head.

Echonomics

We’re all languishing because Joey was drowsy today. He gets sleepy after he’s been under the weather, which he was most of last week.

In his half-asleep state, he starts into repetitive talking. It’s as if he spoke one phrase over the Grand Canyon and it just kept echoing off the majestic walls. Except in our case, it’s just Joey saying something over and over and over and over and over and over and the only things “grand” are Melissa’s headache and my despair.

Today’s phrases included:

“When will we get HyVee pizza?”

“On Saturday, Joey.”

“When Achieve [his day program] is done we will get HyVee pizza. That’s on Saturday. When will we get HyVee pizza?”

And I’m dumb enough to say, “That’s right, on Saturday” and create his echo chamber.

Later, he drifted in and out of napping with,

“Joey, you need to go by a van.”

We have no idea what that meant. Our working theory is that it has to do with fire drills or field trips at his day program, and the van parking area near the exit is some kind of rally point. We really don’t know and we didn’t feed him any response lines, but he just kept on saying,

“Joey, you need to go by a van” from mid-afternoon ’til evening.

He just had dinner and a warm bath, and he’s watching videos on his computer and seems to be calming down.

Now we need to find a way to calm down, too. He’s echoing off of our last nerve.

Sick day

Warning: some unpleasant stuff will be described. Also annoying people.

The kid has the respiratory virus du jour. Lots of congestion and a raspy cough.

But also plenty of gagging. You see one of his autism deals is that he won’t expectorate. He doesn’t spit out gunk – he just swallows it.

So, while I was off at work, he threw up all over his bedding. Melissa cleaned up the mess (you know, what the cleaning spray cans call the “solid”) and lugged the bedding – including a weighted sensory blanket, to the laundry room at the other end of the house. She has weight lifting restrictions due to a medical condition, so her moving a soaked load out of the washer and into the dryer is a no-go. She gave me a call to describe the situation.

I’ve been behind on shopping, so there wasn’t any kind of cleaner for the mattress or rug, both of which caught some of the mess. So I left work to buy some and come give Melissa a hand at home.

On the plus side, the secretary at work made splitting as painless as possible. She helped me think through what absolutely needed doing so I could bundle up stuff and get it done at the house. She also called various folks for me so that others could take over a couple of scheduled meetings.

But then I got to the hardware store to get those cleaning supplies. And that’s where Joey’s sick day started making me sick.

There were plenty of red-vested employees visible around the store, but most were stocking shelves and displays. There was only one register open.

The woman at the register was also answering the store’s incoming phone calls. She was in an extended argument with someone who wanted a rug shampooer or other rental doodad and wanted to debate the store’s “no reservations” policy.

I was third in line. #1 was a little old man who kept saying “I don’t do this very often,” meaning swipe a card at a point of purchase. He pushed wrong buttons and cancelled his own transaction at least twice before the lone check out clerk escaped the call with the aggrieved rug shampooer customer and helped #1 pay for his package of batteries.

#2 was a burly contractor looking fellow picking up some landscaping materials. As he stepped up to pay, off went his cell phone. And of course he took the call.

It’s a few hours later now. Joey’s bedding is pretty near clean. The mattress will be dry enough for fresh sheets pretty soon, although Joey jangled my nerves by knocking over the oscillating fan I’d placed in his room to help dry the mess spots I’d cleaned.

I’ve finished the major work I toted home.

Next?

Busted

Some of you might be members of Christian churches in which the next several days are deep and precious.

I was up early to read and pray, so I was into my thoughts about Jesus and his passion. They were so fresh and inspiring that I was writing them down to share with others.

Then Joey woke up and started into his repetitive talking. No, that’s not right. Repetitive bellowing is what it was.

“What did Belle do?” (x 7)

“What time is HyVee Pizza?” (x 5)

“Dad has to go to WORK!?!?! (x 3)

“We’re watching Spencer’s movie” (x infinity)

My beatific disposition went foul. I was angry at the intrusion. Then I was angry at everything – the dog biting at her own leg, the cat’s puny snoring, that fact that there’s snow on the ground past mid-April…

And then, maybe because I’d been in prayer and was receptive, a holy insight intruded to bust me:

And they were bringing children to him that he might touch them, and the disciples rebuked them. But when Jesus saw it, he was indignant and said to them, “Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” And he took them in his arms and blessed them, laying his hands on them. (Mark 10:13-16)

Just like the first apostles, I’d let my serious, adult piety get in the way of love’s purity.

So, following the Master’s example, I put my arm around Joey and began to bellow back, responsively,

“Belle got angry at Gaston!”

“HyVee pizza is on SATURDAY!”

“Yes, dad has to go to work.”

Well, I still don’t know just what he means about “Spencer’s movie” so I skipped that one. But he was plenty smiley about the others.

If you’re a Christian, we wish you a blessed Easter with Christ’s love pervading all of your relationships and interactions. If you’re not, we wish you peace and joy. Whoever you are, we pray that love will intrude and bust you in needlessly anxious moments.

The Mr. Fred Maneuver and other Tactics

As mentioned over the weekend, Joey was part of a music therapy program concert.

He put his fingers in his ears, his longstanding sign of non-cooperation. Then he smiled, which means “I’m going to make this into a game.”

He wouldn’t walk up from our seats to the stage when it was his time to perform. So I had to escort him. Bribery was employed. “You’re working for ice cream,” I growled, letting him know that his post concert treat was in jeopardy if he didn’t give the minimal effort of remaining on stage for his part of the program.

He put his fingers in his ears, smiled and began to walk back to the seats, so I physically redirected him, taking him by the elbow, pointing him back to the stage, and reasserting the “ice cream” bribe. He complied.

IMG_20140411_192930_719But he kept smiling and trying to make eye contact with me. I knew that if we locked eyes, I would be caught in the game and he would run off the stage just to mess with me. So I resorted to the “Mr. Fred Maneuver.” This is a tactic named for a wonderful home therapist who worked with Joey back in California. Mr. Fred used it to suppress repetitive speech, for example, Joey asking the same question about a Disney musical lyric over and over rather than doing the task the therapist was trying to lead.

The Mr. Fred Maneuver is to make a huffing sound while looking away from Joey and bringing your fist to your chest, like a Roman imperial (or is that Klingon?) salute. Like this:

IMG_20140411_194743_111

It worked. Joey stayed on stage and at least whispered some lyrics from “This Land is Your Land” while the music therapist accompanied on guitar.

I’m reminded that coyotes are very smart critters. Ranchers have to keep updating and alternating the defenses of their flocks and herds, because the coyotes figure things out and change their varmint strategies. Yeah, developing techniques to keep an autistic kid cooperating is like what the ranchers have to do.

Words and Music by…

Yesterday we posted the news that our book is progressing, so that takes care of “words.”

IMG_20140411_185912_022How about some music? Last night was the annual “Music in Me” concert by Music Therapy Services of South Dakota, hosted at First United Methodist Church of Sioux Falls. Quite a playlist by an amazing group of kids, from toddlers to young adults.

IMG_20140411_183249_426Therapist Lora Barthelman is a great blessing to our community, working with individuals like our son Joey and with groups of kids who socialize through music. Their live performances and some video from her sessions with them brought out the variety of ways in which music helps develop social and personal skills, as well as beauty and joy.

IMG_20140411_183506_933Joey had a couple of opportunities “on stage.” He covered his ears, which is his way of saying, “If I can’t hear you, you can’t see me.” Yeah, I know. But this is autism. He offered stage fright with a smile. Fortunately, he was featured in one of the videos, so people got to see a bit of his work.

He had a lot more fun as a member of the audience than he did on the stage.

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Later, I’ll share some of the care giver tactics used to get him up on stage. For now, enough to say it was a wonderful evening and we are grateful for music therapy.

“Cantare amantis est”
(Singing belongs to one who loves)
St. Augustine

Giving you chapter and verse

The experiences that resulted in this blog and our Facebook page just became the first draft of a book.

We have a publisher and now we’ll be into all the heavy duty editing, rewriting and stuff like that… so it won’t be out tomorrow but God willing and the usual catastrophes not proliferating, we should have news for you in a few months.

Thanks for being part of this “chapter” in our lives… blogging will continue, of course!

Sideshow

Last night we took Joey to a performance of Disney’s stage production of Beauty and the Beast.

We were a bit apprehensive. It had a 7:30 pm start and he gets sleepy around 8:30-9:00.

Joey Beauty and the BeastBut it went wonderfully. Even though he forgot to bring a “fidget” item to hold, wave and otherwise calm himself, he didn’t need it. I kept checking him in my peripheral vision, and most of what I saw was him smiling at the show tunes, especially the ones he knew best from the animated version.

So looking off to the side was a big part of the fun for me. At one point, he was kicking his leg out. We were in a section where this didn’t involve kicking a chair in front of him, so no worries there. Even better, I realized that he was kicking in time with the ensemble song and dance of “Be Our Guest.”

At intermission, I took him down front to look over into the orchestra pit. He was quite taken with the elaborate drum kit. He’s been doing some nice percussion work in his music therapy, so no surprise there.

I’m still smiling about the night. Joey the sideshow was as much fun as the stage show.

“If life could just stay ‘HyVee Pizza on Saturday'”

The title is a quote from Melissa. We were having one of those precious married couple conversations last night – the kind that get run out of town by all the busy stuff. We were talking about our thoughts of God, memories of special people and moments – all that stuff from the heart, in no rush.

Her pizza insight came as we reflected on Joey. He was getting nestled in for bed, watching movies and chuckling a lot. He knows when it is Friday and that means the next day will be donuts in the morning and pizza in the evening. Joy in life’s simple blessings – if only we could keep our hearts and minds in that place.

Although he’s a man of simple pleasures, Joey’s not about just any donuts or pizza. They have to be from the local HyVee market. Breakfast has to be “brown donuts,” the simple glazed ones. No crullers, no fillings, no special flavors or textures.

And the pizza has to be traditional (thick) crust pepperoni. Not thin crust, not two-topping. And it needs to come home in the brown cardboard HyVee box.

It really hit me today how special this weekly order is to Joey. Really, to all of us.

Pizza Box Some friends came up with this creative birthday present for Joey. They have a big family – each of them made a card for him in the shape of a pizza slice (pepperoni, of course!) and they assembled these in a HyVee pizza box – along with a store gift card for his next pizza. An excellent gift and we keep it on display.

I usually hit the gym early on Saturday morning, and am able to run by the market and arrive home with Joey’s treats just as he’s waking up. But they make up the pizzas fresh each day, so the shelves are empty when I get there around 7:00. I have to ask the girl in the deli area to make one with Joey’s specifications. Today I sent an email to the market about this,

Dear Management of HyVee Sioux Falls #6 (57th & Cliff),

I come in pretty much every Saturday morning around 7 a.m. I have an autistic son who loves HyVee pizza, and he has it every Saturday. But he’s very specific – it has to be pepperoni on traditional crust.

The young woman in your Italian [note: if you call the store they pronounce it EYE-talian] department always makes one up for me if there aren’t any in the front cooler. I really appreciate this. I can see she’s working hard getting set up for the busy day, so for her to take time and make something special for my son really means a lot. I appreciate your store and all who work there.

Got a nice note back from a manager,

Thank you very much for the e-mail. I will make sure & give a “Hy-Vee Hy-Five” to the employees.

I hope you have an excellent weekend without the snow falling!

So right. No snow, moderate temperatures (and sunshine!), and Joey is all smiles about HyVee donuts and pizza. Simple blessings for which to give thanks. “Normal” stuff that makes life “excellent.”

Melissa and I concluded that when Joey moves to a group home some time next year, we will most likely build a regular weekend visit with him around picking up a HyVee pizza to serve him here at the house.

There’s a spiritual power to these little routines. It’s in God’s design to mark rhythms of life, and to see the divine hand in all that they bring,

And God said, “Let there be lights in the expanse of the heavens to separate the day from the night. And let them be for signs and for seasons, and for days and years, and let them be lights in the expanse of the heavens to give light upon the earth.” And it was so. (Genesis 1:14-15 ESV)