Smokin' Penguins Part II

Since yesterday, I’ve learned a little more than I want to know about how nebulizers work. I’ve also realized that the tube that carries the steam from the penguin doesn’t attach to the penguin’s belly button (as I had naively been led to believe) it actually attaches more to the penguin groin area (do penguins have groins?) Although a steaming penguin groin is a little easier to believe than a steaming penguin belly button, it’s a lot less appetizing. Steaming penguins (great band name, by the way) are supposed to distract a kid from the fact that there is an Old-Faithful sized gusher of steam heading his way. Good luck with that. Errol isn’t the smartest kid in the world, but the penguin nebulizer didn’t fool him for a second.

I’ve also learned that what the nebulizer shoots into my son is not pure love (as I had naively been led to believe) but actually steroids. The steroids are steamed and then inhaled into his lungs. I won’t tell you what it looks like (because you shouldn’t know) but suffice to say, I hope the cops don’t come to the door as we are “hitting the penguin!” I’m not sure if the steroids are working, but Errol’s cough is better, he’s hitting .327 with 32 home runs,
and he’s suddenly grown a full beard, 

which helps to explain why both the Boston Red Sox and the Taliban called yesterday.

The bottom line is that the medicines are working, Errol is improving, and he should return to his normal school and baseball routine soon. We’re thrilled with Errol’s recovery, but the feelings that Errol’s sickness have excavated have been bad ones, and the thoughts of this summer’s surgery have been scary ones.

Here is a little Nebulizer questionnaire. If you scroll down you’ll see the interactive version of this poll to your right.

What would be the best nebulizer camouflage?

• You mean it’s not a penguin?
  
• Nuclear reactor cooling towers have smoke coming out of them so if you shaped the nebulizer like a cooling tower, a child wouldn’t know it was really a nebulizer
  
• Condoleezza Rice 
  

Smokin' Penguins Part I

Errol’s Cinco de Mayo started with a wonderful mid-morning horseback ride, but went downhill from there. When Cary picked Errol up from school this afternoon his teacher was concerned about his eye and his cough. Cary was too, and she drove Errol right over to Doctor Hunsinger who diagnosed him with pink eye, and an ear infection. She’s also concerned about his aspiration, which could lead (and, in the past has led) to pneumonia.

Sure enough, Errol has been feeling pretty lousy and has had a hell of a cough for almost a week, and now we know why.  To heal our boy, the doctor gave Errol two shots, two eye drops, and one penguin nebulizer.

A nebulizer is a high tech vaporizer that fogs medicine directly into the patient’s face. It’s known more widely by its scientific name: bong. Some marketing genius came up with the brilliant idea that if you designed a nebulizer to look like a penguin, it would distract the nebulizee from the fact that he was face to face with a machine that rumbles like a jet plane and shoots jets of steam from it’s belly. Call me crazy, but if a penguin tried to froth a latte on my face, I would be pissed! Errol didn’t mind, though. Not even a single “Uh-oh!”

A double infection and incipient pneumonia is, of course, nothing for Errol.

He’s had worse. But the poor little fellow was wiped out by his many maladies and after his pilgrimage to the doctor he could barely muster the energy to laugh as I made animal noises and galloped around the room (don’t ask).

Every time Errol gets sick his mother, Owen, and I get worked into a tizzy. It's hard not to remember the horrible months spent in the hospital. Its hard to forget Errol's sweet little arms poked full of holes. I get a knot in my chest when Errol gets sick. 

Errol is asleep now (without a single coughing fit!) and we hope that his penguin has put him onto the road to recovery. We’ll keep you updated.

Uh-Oh

Errol spends part of his Saturday mornings at the Farmers’ Market helping his mother. He loves the attention he and his blonde hair get. He loves to hear and see all the customers who stop by. 

There is a vendor at the market who always takes time to visit Errol. “Hey Boy!” He greets Errol. Sometimes Errol smiles back, sometimes he just looks at his hand. Errol’s friend doesn’t seem to notice the difference. “How you doing today, boy!” Errol looks at his hand again as if he were about to discover something very profound. He may be. Although it is a pretty one-sided conversation, Errol’s buddy never seems to notice that Errol is not exactly typical. Or maybe he does.

When Errol was diagnosed with his profound developmental delay, I started seeing folks with birth defect everywhere. I wanted to go up and talk to them. I usually resisted the urge. Once, a friend went up to a woman in the grocery store and congratulated her on her pregnancy.

“When are you due?” My friend asked.

 “Five years ago!” The large woman hissed.

I didn’t want to get it wrong on aisle 5 across from the thousands of gallons of juice.

“You’re daughter is so cute. What’s her diagnosis?”

Hissssss!

Sometimes when I’m out about town, minding my own business, I see a family with a kid who has a developmental delay and I want to run right up to the child and talk to them (because most people don’t talk to these kids) and I want to put my arms around their parents and say, “I understand. I’m one of you. Tell me everything. I’ll listen.”

I don’t usually say anything.

Every week now the old man at the Farmers’ Market comes over to Errol and talks to him. And one time after they finished talking about the old days and looking at Errol’s hand, the old man turns to Cary and says, “It’s great that you take that boy out in public.”

And what the hell do you say to that?

“Thanks, but you should see the other one. We don’t let him out.”

I mean the guy has served in at least one world war (he actually did- told Errol all about it) and comes from a very, very different time. A time when retarded people were shut in (or worse). He probably didn’t see people like Errol in his day (certainly not in WWII). He’s talking to my son.

And even though I’m annoyed by his “compliment”, and why the hell shouldn’t Errol be here!?! The man means well, and he has broken a silence that few people break. He’s acknowledged Errol and who he is. And it is good that Errol is here.

So I just smile and listen to Errol and his buddy talk.

“Well, we was pinned down by the Germans in this little town in France.”

“Uh-oh!”

“That artillery fire was deadly!”

“Uh-oh!”

“We sat in the mud for a week with nothin’ to eat but beans and rice.”

“Uh-oh!”

And I look for some more atypical folks in the crowd. And I’ll be ready to listen.

 

Opening Doors

Errol loves riding horses (wait ‘til they give him a hippo!) His teachers were worried he would cry on his first day out riding, but Errol laughed the whole time. The next week when his class went back to ride, Errol’s riding assistant said he was the happiest child she had ever seen (she thinks he’s happy on a horse, she should see him on our Pomeranian!)

We’ve continued our work on up! Errol has gotten really good at answering our questions about up? Once he even volunteered up! Which is a big developmental step forward. We are so happy to have an entrance into Errol’s desires. Now if he could just change his diaper.

Errol’s brother Owen (ready to turn six) is opening some of life’s most exciting doors. All at once, Owen is discovering math, reading and writing. It’s a very exciting time for him (he gets very proud) and it’s great fun to guide him along the path of learning (I’m a real bad-ass when it comes to addition!!!) It’s also a world Errol will probably (never say never) not know. After all, Errol is three and his vocabulary consists of uh-oh! and we’re ecstatic because he can occasionally sign up! (for all we know, he thinks it means swordfish). Errol learns and then he forgets, he learns and then he forgets. Sometimes it’s like he’s walking through quicksand.

Then again, math and reading are great (well at least reading), but I’m not sure they are the be-all and end-all. Errol has opened doors we didn’t even know were there. He’s shown us that life is abundantly joyful, that laughing is better than not laughing, and that there must be something really amazing on his right hand (three years into this thing he keeps on staring at his right hand - maybe there is a secret code or a tiny pirate treasure map tattooed on there). We are grateful for both our boys and all the doors they lead us through.

Ropin' and Ridin'

When I was told my son would be undergoing hippotherapy, I thought of a large animal on a couch in a shrink’s office, “doctor, I had the dream about the man with the gun again!”

 

How would that help my son, let alone the hippopotamus? And what kind of deductible would the hippo have? I had lots of questions. Luckily I didn’t ask them.

 

Today was Errol’s first day of horseback riding – or hippotherapy as they call it out here on the prairie. If a kid can’t walk, it’s hard to imagine them riding a horse, but that’s exactly what Errol did this morning. At 9:30 a.m. the bus pulled out from the Children’s Center with a load full of ropers and riders, some in wheelchairs, some deaf, and others blind, headed for the Riverwood Therapeautic Riding Center.

 

I don’t know if it’s the rythym of the horse, the balance the kids learn, or just the cool clothes they get to wear, but horseback riding is great therapy for disabled kids. Errol’s teacher had a student who couldn’t even sit up, and then aftrer a few months of therapy was standing. By golly, were getting squadron of pet ponies for our boy!

 

We were hoping to get to watch Errol’s debut in the saddle, but since a lot of the kids cry the first time they ride, we gave the little cowboys some space. Of course, there were no tears from little Errol Clifford who laughed the whole time he rounded up them doggies. We’ll be there next Tuesday to watch our little cow poke at home on the range. 

Up up and away

We're working on a new word with Errol: 

Up

When we get Errol out of his wheelchair we say, 

"Errol, do you want to get up? Up? Up? UhhhhhhhhhP!"

And we throw our arms up in the air above our heads. Three points!

We repeat ourselves and the field goal motion and we repeat ourselves again until Errol signs back to us: field goal!

It's working. We've been doing this for three days and around 327 points and Errol is making the up sign back to us more and more. He's even making a vaguely "uuhhhhh" sound. 

We are so proud of our little man.

Errol works so hard and slowly by slowly he is learning.

Next stop:

Down

There is a new poll below. Vote for change. 

Poll

WHAT IS ERROL'S ACTUAL NAME?

So we had a poll about what Errol's actual name is and there was a three way tie for first.

The winners were:
Little Man
Caesar Augustus
Errol

Max lost.

I think we'll need to have another poll. Or maybe not.
I asked Errol what he thinks. He smiled. I think he likes his name. It's grown on me.

Errol it is. 

There is a new poll below. Vote for change.

What's His Secret?

Life is unfair.

What's his secret?

Love

Errol is a vocal boy, but we aren't smart enough to understand his words yet. We've been working with Errol (or Caesar Augustus, if the pollsters have their way) on learning to sign. Errol is slowly increasing his vocabulary. He's understands the sign for: eat, more, nuclear proliferation, all done, I, love, and you. Here is Errol, arms crossed, making the sign for love. We hope that one day Errol will be able to say more. But there really is no better place to start than with love.

If you're happy and you know it, clap your hands

I don't remember learning to clap. I'll never forget Errol learning. 

"If you're happy and you know it, clap your hands. If you're happy and you know it, clap your hands. If you're happy and you know it, then your face will surely show it. If you're happy and you know it clap your hands." 

Usually by the time we've gotten through one verse Errol is ready to clap along to the next four hundred. He needs a little help remembering how to start, but once we take his hands in ours and lead him through the motions a few times, muscle memory clicks in and Errol claps along and along and along. He loves clapping and we've never sung this song more than he wanted.

Errol is a great clapper (and head patter). 

Walking is next!

Errol's favorite baker

Errol has an amazing mother. The Winston-Salem Journal, our local paper, agrees. Here's an article they wrote about Cary.