Raising a special needs child is not for wimps.
We’re fighting today. Don’t ask me why, it just started off on the wrong foot.
First I heard him in the kitchen trying to talk Brad out of the milk.
Brad said, “No, you can’t have all of the milk. You can have some of it.”
He said, “Come on Daddy Brad.”
“I said you can have some of it,” Brad said.
“I want that milk!”
“You can’t have all of it.”
Then I heard him heading back into his room grumbling, “Hmmpffff! Sermon Man!”
So I turned over and went back to sleep. You think I was getting into the middle of that? Not on your life.
I guess it was around 9:00 when Brad left for church. He said, “Charley, I’ve got to go to church.”
Charley said, “Not me.”
Of course I had to go and stick my big nose in. “Oh yes you are,” I said.
“No not.”
So it comes time to get ready for church. I’ve got his pants, his shirt, his underwear or “wonderwear” as Charley calls it, and his socks all laid out for him on the bathroom sink, and of course, 2 towels. Charley likes 2 towels and he doesn’t even care if they are wet as long as he has two.
I say, “How’s about shaving the other side of that beard for church son?”
And he says, “No thank you.”
So I say, “It’s about time for your shower.”
“Or what?” he says.
“It’s not wise to have a smart mouth, now get out of the bed.”
“No.” He pulls the covers over his head.
So I reach under the blanket and tickle his toes.
“Get away!”
I say, “Son, you coming out from under there?”
“Hush!”
“I’m not going to hush until you get up and take your shower.”
I stand there a few more minutes. Someone is not budging.
So I say, “Hmm, there seems to be a rock there in the middle of the bed, a big lump and look, it’s underneath a Superman blanket!”
No response.
I go and get his batter operated Superman toy and turn it on. It’s a most annoying toy that just keeps saying “Look, up in the sky! It’s a bird, it’s a plane, it’s SUPERMAN!” Now why don’t they make a toy with a cape that yells “It’s SUPERMOM?”
I can personally say that this particular Superman toy has caused me some grief. He had left that toy in the car and I guess I hit a bump in the road or something and it must have some sort of short in it because I’m driving down the road when all of a sudden I hear this voice out of nowhere saying, “Look! Up in the sky!” You get the picture. But the problem was, I was the only one in the car, and the toy was in the back seat, and I couldn’t reach it. It just kept saying the same thing over and over again. Come to think of it maybe I do have something in common with that Superman toy.
I tried to turn the toy off when I got home but couldn’t get it to stop. Finally out of sheer frustration I threw it into the bushes. “There! take that!” I said, and went into the house. The problem was, I forgot about it. I don’t know how long it had been in the bushes, but it had settled in pretty deep and I wasn’t about to reach in and get it out, not with all the wasps buzzing around, so I just left it in the bushes. Well, one morning on our way out to the car the toy went off and Charley heard it and begged me to get it out. As in put my hands into the bushes with the morning cobwebs and spiders? No way.
“Pleeeeeeeze mom.”
This of course meant that we would listen to that stupid toy all the way to the doctor’s office in the car, but well, I caved in and got a stick and poked at it until it fell out onto the ground.
Now the toy lives in his room again. It doesn’t go off all the time but when it does, it seems to be when I’m in the house alone. I hate that toy. Except this morning I’m hoping the toy will be on my side. Perhaps it can irritate my son enough to get him out of bed.
I put the Superman toy next to him on the bed and it’s yelling the superman thing, and that should do the trick, but nothing. Nada. No movement whatsoever. Alright, it’s time to play dirty.
But what will I do? I know, I’ll get that backscratcher out of my room. No, he doesn’t have an itchy back, it’s just that there’s a little red string on the end of it. So I reach over and start to tickle his ear with the string.
He swats at the string but doesn’t open his eyes. “Mom, there’s a bug in here,” he yells as if I’m down the hall.
I don’t say anything, I just stand there real quiet and then reach over with the string and tickle his nose.
Another swat.
“MOOOOOOOM, I said there’s a bug in here!”
Sooner or later he’s going to open his eyes. I tickle his ear one more time and this time he opens one eye and sits up. “I MAD!”
“Well yes indeed, now out of the bed buster.”
“No.”
“You’re gonna be sorry if you don’t hurry up.”
“I not going.”
“Okay fine, but you aren’t going to see Cameron unless you hurry up.”
Charley likes to sit with Cam and Beth during church.
“And you’re not getting a surprise today if you don’t get yourself to church.”
That should do the trick.
I go back into my room to get ready.
The next thing I know, he’s sound asleep, snoring.
It’s my fault really, I’m in charge of his pills on Sunday mornings and I forgot to give him his 9:30 dose. What this means is that his behavior won’t be very nice when it comes time for church, so I decide to leave him alone thinking he’ll sleep through church, and I sneak out the door closing it quietly behind me but first I pick up the cat and put her in the laundry room so she won’t sneak out when he forgets to shut the door behind him, if and when he decides to get his rear end out of bed.
I slip in to the pew and look at Brad who is giving me his famous “You’re late” look.
Ronald is in rare form this morning. He’s leading the singing and stops at one point to ask if anyone has any song suggestions. A tiny child’s voice comes from the back of the church. It says, “No.” Everyone is laughing.
I look over at Dianne and she’s pointing to the back of the church. There underneath the table in the foyer is my son. Hiding. He does that sometimes.
I go back and fuss at him for wearing his muscle shirt because he knows that’s not allowed, but at least he’s at church, and I’d rather have him here than at home, so I tell him to come with me and we sit down in the pew, and I'm finally able to give him his pills.
He fusses because I don’t have any water. I say, “Just chew them.”
“My teef Mom,” he says, pointing to his teeth, indicating that he can’t chew his pills anymore, but since I don’t have a bottle of water in my purse I tell him he can either swallow them or wait until he gets home, and since he’s a show-off and wants everyone to know how grown up he is, he pops them into his mouth, and who’d’ve thunk it, he’s chewing them and the next thing I know, he’s scooting past me to go across the aisle and sit with Cam and Beth where he proceeds to blow his nose on a Kleenex and then throw it at Brittany. I know, that’s about the most disgusting thing you’ve ever heard, right? Me too.
Well this just grosses everyone out, and he looks over at me for my reaction, and then moves his eyebrows up and down like Groucho Marx.
I mouth the words to him, “You’re in big trouble mister.”
He sticks his tongue out at me but not boldly, because there’s a technique to sticking out your tongue at your mom so that only you and she know you’ve stuck your tongue out.
Brad starts the sermon.
Charley gets up and comes across the aisle right in the middle of the sermon and says, “Mom, you got me a prize?”
Are you even kidding me?
“Sit down,” I say.
He sits down.
A few minutes pass by and I’m not happy with something Brad has said about me in his sermon, so I’m fidgeting, and here we go again, Charley is beside me talking into my ear.
“Mom, you mad at me?”
“I’m not happy, now sit down.”
“No not.”
“Either you sit down right now or I’m going to move over and sit with you and Cam and Beth.”
He sits down.
Lets see now. Am I mad? He hasn’t taken his shower. He came to church in his grey muscle man shirt which he knows is forbidden. He’s gotten up every 3 minutes to talk to me during his Dad’s sermon. He’s launched a used Kleenex in Brittany’s direction. You think I’m mad? You tell me.
Finally, Brad is in front of the church giving the Benediction and Charley’s standing right beside him glancing over at me. They start to walk down the aisle and Charley comes over to me and puts his arms around me and gives me a big squeeze.
“I did good in church Mom!”
I glared at him. “You are in so much trouble,” I say.
He sort of gives a little kick in the air and then squats down and puts his hands up in sort of a Kung Fu type of motion.
“Are we Kung Fu fighting?” I say, and I kick my foot in the air and then squat just like him and put my hands up in the martial arts position. It occurs to me that
he must have been watching the Karate Kid movie again.
“Come along grasshopper,” I say and we head off down the driveway towards the manse.
Once inside the house he disappears into his room for a while; he is too smart to ask me for a surprise. He’s bigger than me but I could flatten him like a bug if I wanted to and he knows it, but I usually use my tongue as my weapon and it can be razor sharp when I want it to, and he’s not about to get a tongue lashing, so he’s going to let the dust settle I guess before he ventures out to test the waters.
He has 2 TVs that are both the same size. I don’t remember when or where he got them or even the circumstances. I only know that he has two of them and can never settle on which one he wants to watch, so throughout the day he switches them back and forth about every half hour. It makes me exhausted just watching him. When he gets tired of one he brings it down the hall, puts it on the floor of the work room, switches the clickers, and picks up the other one and takes it to his room. Charley has well developed muscles and hasn’t spent a day in the gym but that’s because we don’t have a gym nearby. I’d take him if we did, but oh well; I guess if you don’t have a gym nearby you can always haul TV’s back and forth down the hall.
Each time he has switched his TVs today he has peeked into the den to see what the climate is like. Is it chilly in here? Is it fair to partly cloudy? Is it fixing to rain all over his parade?
I glare at him. He stands in the hallway and glares right back with his arms folded.
Neither one of us speaks.
When he’s had enough of staring he comes into the den.
“I get my prize now?”
“Do you think you deserve a surprise after the way you acted at church?”
“Yes.”
“Then you would be wrong,” I say. “Did you take your shower?”
“Yes.”
“Liar, pants on fire!”
He laughs.
“Were you supposed to wear your muscle shirt to church?”
“Yes.”
“Give it up son, you’re busted.”
“Warry Mom.”
“Did you throw a Kleenex at Brittany?”
“I play game.”
“It wasn’t funny, son.”
“Did you stick your tongue out at me?”
“No.”
“Yes you did, I saw you.”
“I play game.”
“So you think you deserve a surprise?”
“Yes.”
I say, “No.”
He says, “Don’t tell me no, you TV back at Marcy house.”
He’s talking about the television I recently brought home from Marcy’s house in Louisville, and is threatening to take the TV back to her house, not that he has a means of transportation but that doesn’t phase him in the least.
So he stands there. Waiting. Brad walks by the den and looks in. “What’s he doing?” he asks.
“I think he’s waiting for a surprise,” I say, “But it’s going to be a long wait because in his words, he’s not getting “NUTHIN’!”
A few minutes later I hear the shower. He emerges completely clean, having changed his clothes and he’s twirling his dirty underwear on the end of his foot and flinging it across the hallway. It reminds me of when he was a toddler. We were in the mall in New Orleans and he took his diapers off and started running. Everyone was pointing and laughing and at one point he picked up the diapers and twirled them around and they sailed through the air and landed in a man’s lap. Nothing much has changed since then.
“TADAHHH!” He says, and jumps into the middle of the room.
“Better,” I say, and give him a hug so I can get close enough to him to tell if he’s really been in the shower or if he just stood outside the bathtub while the water ran and then put on clean clothes. His skin is still damp; that’s a good sign. It appears that the water actually landed on the body.
“I clean Mom.”
“We’re all relieved, son.”
“Now I get that prize?”
“Sorry, it doesn’t work that way son.”
“Karate chop!” he says, assuming the Karate kid position again. I’m not sure, but he just might render me helpless.
“Go ahead, chop away,” I say, “I’ve already lost my mind, I may as well lose my head too.”
“Comeone, Sherry! Gimme dat prize!”
“No.”
“Mommyhead!”
“You’re a sight,” I say.
“You a psych,” he says. As in psycho?
I turn my attention to the computer and start writing.
“Sherry honey,” he says.
“Stop trying to sweet talk me,” I say.
“Mommy darling.’”
“It’s not working,” I say.
“Mommy honey,” he says.
“Look at you, begging me for a surprise when you know you’re not going to get one.”
“Why?”
“Because your behavior in church was not acceptable and you know it, that’s why.”
“I good shower mom,”
“Yes, but you were supposed to take your shower before church, not after.”
He’s quiet now, thinking this over, I supposed.
“You me my butter,” he says. (Meaning “You melt my butter.”)
“Ignoring you,” I say.
“Freak!”
Uh oh, now the insults are gonna hurl.
“Nurse!” (That’s the kiss of death in Charley verbiage.)
“Bad teef homan!” (I think he just called me a bad teeth woman – that’s the first time I’ve heard that one).
“Take that back!” I say.
“Mommy…I warry.”
“Apology accepted.”
He goes and gets the basket of dried flowers that’s sitting on the mantle.
“Here Mom, for you.”
“Thanks son, and they smell so good too!”
“Now you got me a prize?”
“No."
“Well boo on you.” He says.
“Well Kung foohey on you!” I say.
He turns and blows me a kiss and then gives another Kung Fu kick in the air.
"Right back atcha," I say.
"Hmmmmffffpppfff!" He disappears into his room. "Hummmpppfff!"
Brad walks by the den again. “He’s in rare form today, huh?”
Yep, the kid is a real kick.
Things are a little more quiet than usual at the end of the hall. Ususally there’s a bunch of whooping and yeehaahing, laughing, and giggling, and “Oooo, bad word,” and “Oh, man, oh man!” going on. But not at the moment. It’s quiet. A little too quiet.
It all started last night at around 11:00 when number one son got some kind of energy burst from who knows where, and the next thing I know I see him carrying a garbage bag down the hallway. Then I heard him talking in his room.
“You a mess!” he said.
I had already gone to bed but could hear a bunch of stuff being shuffled and moved around.
“Mom said clean you.”
Sounds good to me, I thought, and went back to watching Pride and Prejudice. I don’t know why, but I can never seem to catch this movie from the beginning.
“Move outta da way.”
Uh oh, we’re barking orders now.
“I said move you’,” he said, and then crash, bang, clang.
It was a familiar sound – he’s kicked the garbage can again as if it’s going to empty itself.
At one point he came to my bedroom door and said, “Mom, I clean my room now.”
I said, “That’s nice.”
He said, “No lookin’”
I said, “Okay, I won’t,” and then turned up the volume on the TV.
“Hey!” he said and then stomped across the room and proceeded to turn my fan on. He knew I’d turned it off, and he stood looking at me with his hands on his hips. And after he went to all the trouble of turning it on.
“I helpin’ you fan on Mom.”
I was freezing. “Thanks son, goodnight now,” I said and pulled the covers up to my shoulders.
“No night again. I clean my room.”
“Okay.”
“No look.”
Not a chance.
More shoving, pulling, pushing, whatever. The room was getting rearranged, that’s for sure.
“Mom, I done.”
“That’s great honey.”
“You come look now.”
As in…come out from under the covers?
But Pride and Prejudice…
“Here I come,” I said.
“Shut your eyes,” he said.
“Okay.” I squinted of course, just to make sure I didn’t run into the wall.
He took my hand, led me to his room and flung the door open.
“TA DAH!”
“Oh wow…you’ve certainly done a job here,” I said.
And a remarkable one at that. He had managed to move the mess from one side of his room to the other. The path to his bed was completely blocked.
I guess this means no ambushing him with eye drops.
“See? I do good!”
“Yea boy,” I said and slapped him a high five.
“Whelp, I watch my movie now,” he said.
“Whelp, I go back to bed now,” I said.
He waited until he saw me get in bed and then he came into the room and covered me back up with the blanket and kissed me on the cheek. Was that BBQ sauce on his lips?
Satisfied with himself, he returned to his room and shut the door.
More moving, pushing, shoving.
What in the world was going on in there?
After who knows how long the door opened again.
“Mom, I clean my room.”
“I thought we already went through this.”
“More clean,” he said.
“Okay, goodnight sweetheart.”
“Mom, you look my room.”
Once again I went to the hallway and he said, “No peekin’” and flung the door open.
He swung his arm out as far as it would go with a crescendo, “TA DAH!”
Well knock me over because the room was totally picked up, with the exception of course of what I call the grunge-cleaning, and that requires Mom attacking the grime with a dust rag, some spray Oxyclean, a broom and a dust pan. And that wasn’t happening at 12:00 midnight, you could count on that.
Everything was in his closet except for the DVDs, videos, pile of batteries, cassette player, mirrors, and his little white portable DVD player that are on his bed. The other side of his bed is reserved for his body.
I said, “Son, you did a fantastic job, I’m so proud of you.”
He took a bow, hugged me, and said, “Now you love me?”
“I’ve always loved you son.”
“I love you too Mommy,” he said, and shut the door.
Once again I heard him talking to his toys. “I good boy.”
So I made my way down the hallway to turn off the light. On my way I remembered a new Goosebumps DVD I had stuck in my purse earlier.
I knocked on his door holding the white bag.
“Son, every time I look at you, you give me Goosebumps,” I said, trying to give him a hint. He doesn’t have school in the morning. He can’t go back to work until Monday, so what the heck, seize the moment and reward good behavior.
He jumped to his feet.
“What dat?”
“It’s a surprise.”
“Thanks the Lord!” There’s nothing Charley loves more than a new movie.
He looked in the bag and gave me a what-in-the-heck-is-that look.
“It’s a Goosebumps movie, you’ll like it, I promise,” I said.
“Mom, no that again. I want good one.”
Hmm...Me thinks he is displeased.
“Son, you are not being very nice,” I said, “You could at least try being a little grateful.”
“Grapefruit, where?”
“I said grateful. That means thankful.”
He looks at the video. He looks at me. He looks at the room.
“I clean my room.”
“Yes.”
“I clean room good,” he says.
“I know you did.”
“Now I get good movie?”
I stuck out my hand. “Give it back I said.”
“No.”
“Come on, if you don’t like it you don’t have to keep it.”
“No way.”
“Then stop complaining about it.”
“Warry mom.”
“Affection, and I do mean a big dose of it.”
Another kiss on the cheek.
“Thanks Mom.”
“You’re welcome son.”
So I went and got back in bed just in time for more Pride and Prejudice.
“Mom.”
“What?”
“Mom, I cold.”
“Me too.”
“I cold here.”
This time I covered him up.
“Thanks Mom.”
“You’re welcome.”
“Nite Mom.”
“Good night Gorilla,” I said.
A day has passed since that little episode, and I just got home from work.
He says, “Mom, you got me a prize?”
“I’ve decided not to get you any more surprises,” I said.
Well that gets his undivided attention.
“Come onnnnn Sheeeeerry!”
“No, all you do is complain about the movies I’m getting you so you can just forget it buster.”
“Mom, I promise ever again,” he says.
“You sure about that?”
“Promise.”
“Honest Injun?”
“Where?”
Darn it, he thinks I’ve gotten him The Indian in the Cupboard movie; nice going Sherry.
Son, that’s just an expression.
“Oh.”
Now for the acid test.
I pull out another Goosebumps movie from my purse. Now I ask you, am I completely void of any sense? What do I expect, a different reaction? Who was it who said that doing the same things over and over again while expecting different results is the definition of insanity?
The movie has to be in a bag you know, or it isn’t considered an official surprise. I hand him the bag with the movie.
He peeks inside.
He sees the Goosebumps movie.
He thinks I’m playing a joke on him.
“Mom, you funny homan (he means woman)”
“I’m not being funny.”
He starts to laugh.
The problem is that I’m dead serious.
“Remember, you promised not to complain.”
And he hasn’t. Complained, that is. Come to think of it he hasn’t done much else either.
It’s quiet in his room. Creepy silence. Make some noise, will ya'?
The last I looked he was sitting in the middle of the bed with the movie on the floor. It’s not worthy of joining the ranks of Toy Story, the Lion King, the Fugitive, and Men in Black in their respective places on his bed. No, this movie lives on the floor, with the outer wrapper undisturbed.
“Aren’t you at least going to watch it? I say. “How do you know you don’t like it if you don’t watch it?”
No answer.
I have to give him credit. He doesn’t like this new movie choice of mine, but at least he’s not complaining.
I tell him I might be persuaded to sit down at the computer tomorrow and help him pick out a few movies that he will actually like.
“You got that Mask of Zorro?”
“No, but I do have Goosebumps,” I say.
Or not.
I can hear him from all the way down the hall.
“Hmmmmfffff! Hmmmmpppppfffff! RATS! No bumps, no. No goosebumps ever again!”
Remember when I told you that fall break was over? Finished? Caput? Well, let’s just say we’re right back in the thick of it.
Last night I did everything but stand on my head to get Charley to buy into the thought that fall break was over.
I said, “Guess what son, tomorrow you get to go back to school, isn’t that great?”
“No not,” he said.
I said, “Son you’ve had a whole week off, now it’s time to go back.”
“No not.”
So much for the cheerful tone.
So I tried playing the Mr. Bailey card. “Mr. Bailey misses you,” I said.
He thought about that for a moment.
“Don’t you miss him?”
“Yes.”
“Then aren’t you glad school starts tomorrow?”
“No not Mommyhead.”
This wasn’t working either. I would have to turn up the volume.
“Son, I thought you said there were girls at school,” I said, and walked out of the room.
The next thing I knew he was right behind me.
“You right Mom, I go school morrow.”
Well let me tell ya, morrow rolled around and Brad and I went into automatic pilot.
“Time to get up son.”
“The bus is on its way.”
“Hurry up, you’re gonna miss the bus.”
"Would you get your rear end out of that bed?”
He peeked out from underneath his covers. “Relax Mom,” he said.
Yep, we were back in business…Brad and I were running around the house like a couple of chickens, and he was (if you’ll please excuse the expression) dragging his butt. Things were definitely back to normal.
The bus pulled up. He got on it. Ain’t life wonderful?
“Whew,” I said to Brad, “I thought school would never start back up again.”
The phone rang. Brad sort of stood in the doorway and hovered. That’s never a good sign.
“The school just called. They think Charley has pink eye,” he said.
We had sent him to school thinking his allergies were acting up again because his eye was a bit red, but that’s happened before and then gone away, so we went on and sent him.
Into the car and down the mountain we went to retrieve our kid.
One of his teachers, Mrs. Tooter, talked to him all the way out to the car and told him not to fuss at us for picking him up at school.
He said okay, and then when she was out of earshot he demanded an explanation. “Daddy, why you uppin’ me at school?”
“Because we need to get your eye checked.”
“Where?”
“We’re going to the Dr’s office.”
“Daddy I hate darn doctor.” He was referring to his recent hospital stay when they turned him into a pin cushion with the IV.
“It’ll be okay, I said, “They are just going to look at your eye.”
Why oh why can’t I just leave well enough alone? But no. Mommy Dearest had to stick her big nose in because no sooner had we arrived at the doctor’s office than I started concocting this scheme to have all three of us get our flu shots.
I went first, then Brad.
I came back into the examination room and he noticed the Band-Aid.
“Mom, what happened to you?”
“I got a flu vaccine,” I said. It sounded better than saying the word shot.
“Not me,” he said.
He had no clue what a vaccine was but if it required a Band-Aid he knew he wasn’t about to do it, so he started blowing me kisses. Perhaps if he buttered me up …
“I love Dad,” he said.
“Me too,” I said.
The physician’s assistant took his blood pressure. Then since Charley has two arms he took it again in the other arm.
“Whelp, I go home now,” he said.
“No son, we haven’t seen the Dr. yet.”
He blinked his eyes at me. It’s his way of telling me off without opening his mouth, and then when he'd had enough of waiting for the Dr. which seemed to take forever, he fell sound asleep and started snoring.
I looked at him stretched out, oblivious to the world around him, and to tell you the truth if I could have I’d have shoved him off of the examination table and taken a nap myself.
The Dr. broke the news. “It’s pink eye,” she said. “He’ll have to be off school the rest of the week.”
I looked over at Brad. “Fall break times 2,” I said.
“Whelp, I go home now,” Charley said.
“In a minute son, we’re going to get you an immunization to keep you from getting sick,” I said, as if using a big word would keep him uninformed for at least another 30 seconds and therefore he might not bolt for the door.
Scott (the physician assistant) tried reasoning with him first. Man to man. I peeked through the crack in the door. Scott was telling him it wouldn’t hurt, but Charley wasn’t buying it. Any of it. He sort of slid off the examination table and was kind of crouching down.
“I scared,” he yelled.
Scott was saying, “It only takes a second.”
“No!”
So I went into the room to try and help.
I said, “Charley do you want me to stay with you while you get your shot?” Did I just say the word shot?
“NO!”
“You want me to leave?”
“NO!”
“Roll up your sleeve, here let me help you.”
“NO! GET AWAY!”
“GET AWAY FROM ME!”
He was curled up into a little ball.
So I curled up into a little ball with him. And just hugged him. He hugged me back and buried his head into my shoulder. “We’re only trying to keep you from getting sick,” I said. “It’s because we love you honey.”
“I NOT A SICK BOY!”
“I know you’re not now, but you might get sick if you don’t have the shot.”
Next Brad tried.
“NO!”
The shot was not going to happen. At least not today.
Brad and I look at each other with that look that husbands and wives give each other when they know they can beat their heads against a brick wall and in the end all they will have are heads that have been beaten against a brick wall. “Miss Scarlet? Tomorrow is another day,” he said.
We suggested that Scott look into the possibility of getting that nasal spray we’ve seen on TV so Charley could get a flu vaccine. So we decided to wait a week or so and try again, and if that doesn't work, we'll head to Knoxville where hopefully they'll have that nasal spray. Come on medical people, it takes what it takes.
It’s been a weird week. Today is Thursday, at least I think it is. It’s so early in the morning that I’m not sure if it’s still Wednesday.
I heard Brad in the hallway. Charley was asking him, “Daddy, this school out?”
Brad said, “Yes.”
“Work off?”
“Yes.”
“Church over?”
“Yes.”
Silence. Perhaps they've gone to the other end of the house now and I can go back to sleep. Perhaps I can get one more hour before I have to get up and do the day. Perhaps…oh for crying out loud, the door opens.
Brad’s creeping into the room. He’s being as quiet as he knows how, but I hear him moving things around. He’s looking for something. Charley’s in the doorway with the light on, of course, “Dad, leave Mommy lone.”
He continues moving stuff about.
I may as well join in the party. “Brad, what the heck are you doing?”
There are some things you just can’t write about. I knew exactly what he was looking for, but I can’t tell you because even Brad deserves to preserve what ever dignity he can fool himself into thinking he has.
He shuts the door and leaves.
I could go back to sleep.
Or, I could face the fact that I couldn’t get back to sleep and could just get up.
Five minutes later I’m chasing Charley around the kitchen table trying to put drops in his eyes. Yes, I did say the word chasing. Someone I know and love must be feeling better, because he’s darting one way, then the next, keeping the table between us.
So I sweet talk him. “I’m not playing with you, son, you’re going to get these eye drops and that is that. Now be a good boy…”
“I not a boy!”
“What are you, a monkey?”
“Stop it mom. I a man!”
He's a man all right, a man who's standing his ground.
“Son, you must be feeling better; would you like go to work today?”
"You're fired!" he says.
"You can't fire me, I'm the mom."
“I can call Betty and have her pick you up in about 30 minutes.”
“Stop it Mom.”
I cross the room and pick up the phone and pretend to dial.
“Hello Betty? This is Sherry Palmer, Charley wants to go to work today.”
Charley plops himself into the chair and assumes the eye drop position.
“Never mind Betty, false alarm,” I say and hang up the phone.
I pick up the little bottle of eye drops and talk to him to distract him. It's gotta be a direct hit, because I know I won’t get another chance, at least not for a while.
I’m holding his eye open and he’s squinting it shut.
I’m saying, “Hold still, will ya?”
And he’s leaning as far back in the chair as possible. I’m sort of standing over him trying to keep my balance but I feel myself slipping.
The drop lands on his cheek.
“Son, the idea is to get it in your eye,” I said, tightening my grip on him.
“It’s Cold!” he says and jerks away.
Eye drops at 5:45 in the morning. What was I thinking?
“I’m not going to wrestle you to the floor,” I say.
Wait-a-minute, what am I saying? I am on the one on the floor. Correct me if I'm wrong, but this is just too much fun.
Mission unaccomplished.
“Warry mom.”
“Not half as warry as I am,” I said.
“Whelp, I go my room now.”
“Whelp, I get coffee now.”
"Mom, you order that Mask of Zorro yet?"
"Son, you shave the other half of that beard yet?"
“I love you Mom.” I can see him peeking at me from the doorway.
“I love you too son.”
So yes. It’s fall break. It’s Thursday. Or is it Wednesday? The rooster across the street hasn’t crowed yet. The chickens haven’t made their way across the lawn. The cat hasn’t been fed. The breakfast hasn’t been made. The clothes haven’t been ironed. The drops haven’t landed in the eye.
But for now the drops can wait.
I will peel myself off the floor.
I will wrap myself in a blanket, wipe away the spider webs and plant myself in the wooden rocker on the front porch and watch the sun come up.
I will sit here and wait for the roosters and the chickens, and listen to my son in his bedroom laughing out loud at his movies.
I will sip hot coffee and thank the Lord that my son is on the mend and that break or no break, I have more blessings than I deserve because I have another day with him.
It’s 2:45 a.m.
Charley is lying on the floor in the living room demonstrating for me how he lies on his bed holding his mirror while watching his TV upside down.
He just kissed me on the cheek and said, “Warry Mom.” (meaning “Sorry Mom.”)
“Son, are you going to sleep any time tonight? Because until you do, I can’t.”
“I warry you up.”
“Me too.”
“My belly growlin’”
“Then let’s feed it.” (Charley's medicine messes with his appetite. He doesn't eat much during the day, but late at night? Watch out.)
I just put a plate of chicken nuggets in the microwave and so here I sit. Waiting.
Waiting for the nuggets to cook.
Waiting for him to go back to bed.
Waiting for my chance to go back to bed.
Waiting for sleep.
The sanity of sleep.
Blessed sleep.
I say, “Come here son,”
He comes with me and we walk down the hall. I point at Brad who is snoring loud enough to wake the dead.”
“See that?”
“Yes.”
“That’s what I want to do at 3:00 in the morning.”
He starts to laugh. “Mom, Dad’s loud.”
“Yea, but I’m the one who’s awake,” I said.
Now he’s rubbing my shoulders.
My head starts to nod. “Mom, you sleepy lookin,’” he says.
“Oh, you think so?”
“Mom, you mad at me?”
“No, I’m just really tired.”
He says, “You nice person.”
I can’t argue with that.
He says, “You God you heart.” (Meaning, you got God in your heart, so you aren't allowed to be mad at me)
I said, “Yes son, and it’s a good thing too.”
“Mom, I good at church today.”
“Uh huh.”
I had to smile. We had a church event earlier this evening and had guests from other churches there. At one point he came into the fellowship hall. He was very upset.
He said, “Mom, Pam no helpin’ me.” (Notice the picture of Pam at the beginning of this post).
I said, “What?”
He pulled me outside. He was telling on Pam.
“Pam no helpin’ me Mom.”
There stood Pam, on the porch. She said, “I told him to go right ahead and tell on me.”
Pam is one of Charley’s Sunday school teachers. She proceeded to point out a coke can that he had thrown on the ground. He was making every attempt to con her into picking it up for him.
I said, “Charles Benjamin Palmer, you pick up that can and put it in the trash!”
He said, “Helpin’ me?” The little con artist.
I said, “No way Jose, pick up your own coke can.”
He refused.
After a word in private with him, he made Pam, Brett and Kaitlin all turn their backs while he went over to pick up the can. Then he tossed it in the trash and the three of them went home.
He nudged me. “Mom, my chicken done.”
I thought about how he had tried to con me into picking up his can of coke.
“So get the nuggets out of the microwave, I need to get back to bed.”
“Helpin’ me?”
“You don’t need help.”
So he sits down on the couch and folds his arms.
I ignore him and continue to type. I’d go back to bed but Charley roaming around the house unattended in the middle of the night is not a good idea. The last time he did that he stuck my bra in the toaster oven. The thing turned brown. At least if I had known he was going to do that I could have ordered a brown bra, that way you couldn't tell that it had been toasted. That was years ago. I’ve slept with one eye open ever since.
He said, “I warry you up. You my mom. Remember? You come my birthday? Give me DVD player?” (Someone is desperate for conversation).
“Yes son.”
“I promise, ever ever again.”
“Okay son.”
The nuggets are done.
He puts the nuggets on his tray.
“Mom, why you work a computer?”
“Because you woke me up.”
He says, “Mom, no work computer again.”
“Okay son.”
He says, “Whelp, I go my room now.”
So I say, “And not a moment too soon.”
“Mom, you back a bed.”
“Okay son.”
I go to his room and open the door.
“Be warned my love, the kitchen is officially closed. If you come out of your room again tonight for anything other than the bathroom, I will come into your room, and sit in the middle of your bed for the rest of the night.”
“No not.”
“In fact that sounds like fun. Why don’t I come spend the rest of the night in your room?” I start to walk into his room. You should see the look on his face.
“Mom, back a bed.”
“Then I suggest you stay in your room. And I mean for the rest of the night.”
“I love you Mom.”
“Don’t change the subject.”
“I said I love you.”
“I love you too.”
“Nite Mom.”
“Nity nite.”
I want to go on record as saying that this is NOT the most wonderful time of the year.
Oh, don't get me wrong, autumn is my favorite season. So when I say it's not the most wonderful time, I'm really just referring to fall break. School is out this week and Tri-County, Charley’s sheltered workshop is also out since it honors the school holidays.
So this can only mean one thing; if I haven’t lost my mind, I will. You can count on it.
Last night there was a workshop at the library, which meant that I got home a little later than usual. When I walked in the door there was a large blue plastic tote sitting beside the couch.
“What gives?” I said to Brad. “Is someone moving?”
“Well, not exactly,” he said and put his head in his hands. He just had to laugh.
I stood there waiting for an explanation.
“He’s ready to go to Dianne’s,” he said.
Now I was the one sitting with my head in my hands, and yes, I just had to laugh too.
It seems we’ve graduated from the duffle bag he always uses to carry his movies to a large (and I do mean large) blue tote with a lid. Maybe we shouldn’t have given him so many movies last weekend at his birthday party. I don’t know about that. What I do know is that you need a fork lift to pick it up, or wheels, or a squirt of WD40 to help slide it along the floor.
I also know that my son is a man with a plan. It’s Down Syndrome 101. Once he gets something in his brain it’s next to impossible to get it out, and what was in his brain was that he was going to Dianne’s house.
For those of you who are just tuning in to “Life with Charley,” Dianne is our friend from the church. She had a Downs brother who lived to be 45 years old and she understands all about what we live with on a daily basis. Most of the time it’s wonderful, but there are those times…well, let’s just say there are those times.
Charley just loves Dianne. She is the most fun person ever. She lets him lie on her bed and watch his videos and DVDs, eat chicken nuggets with BBQ sauce, and drink milk. And don’t think he can peel himself off the bed to haul his rear end into the kitchen either. No. He expects valet service. I don’t know if he thinks he’s at Sonic or what, but he just lays there and yells, “Dianne… I hungry.”
To him this is the real deal. His nirvana. Blessed bliss. And believe me, we are happy for him that someone as wonderful as Dianne is so sweet to him and takes the time to give him some attention. The only thing is…this time he hadn’t been invited.
I stood in his doorway. He said, “I ready Mom.”
“Where are you going son, you running away from home?”
Maybe I shouldn’t have suggested that. He looked at me like what-the-heck-are-you-talking-about, and said, “No, I go Dianne’s house.”
“Says who?”
“So what?” he said, which is his way of saying “Says me.”
So I said, “I don’t think so, my love.”
And he said, “Yes I are,” meaning, he’s been out of school for 5 days now and hasn’t had his Dianne experience yet, so he’s all packed and ready to go.
“Daddy take me morning,” he said. Well at least he’s not planning on going tonight.
I said, “Did she invite you?”
He said, “Yes Mom.” Uh huh, sure she did.
Just who did he think he was talking to here? I'm the Mom, remember? And Mom's know untruth when we hear it. I happen to know that Dianne is very busy this week babysitting her own grandkids and getting ready for the big festival here on Coker Creek, and I can assure you, she did NOT call and ask him to come to her house.
“Son, you have to wait until you are invited. Dianne is very busy this week; you can’t just barge in uninvited.”
“Yes I are, Mom, I love Dianne.”
"I love Dianne too, which means we need to give her some space," I tried to explain.
"Mom, get out of my room." Guess he didn't like what I was saying.
Tomorrow could be a long day.
Why oh why, oh why, oh why is school out for an entire week, the people want to know. Charley thinks he’s happy about this, but what he doesn’t know is that he’s bored. REALLY bored, and the rules are different for him than other 19 year olds. Most guys his age would be tooling down the road heading off to who-knows-where with his buddies doing who-knows-what. But our son is pretty much held hostage to our working schedule. He cannot be left unattended. Is it any wonder then when I say in my loudest high pitched scream, “I HATE FALL BREAK!”
And ditto that for spring and winter break, and any other break the school can think of, and they think of plenty. At least when he’s in school he is occupied and happy, and not packing large blue totes with his movies preparing for the invasion of Dianne’s house. That’s not to say that he’s unhappy being at home. It’s just to say that when he has too much time on his hands he tends to get creative and Dianne’s house is usually on the top of his list.
Somehow Charley and the school break thing is not a good combination; there are just too many things that can happen...
Take when we lived in New York for example. It was the week of Spring Break and you-know-who was experiencing boredom in Technicolor because it had been raining buckets and he couldn’t get outside. A certain someone who shall remain nameless was up in his bedroom playing and I was downstairs baking a cake.
At one point I walked through the living room and thought I saw something fly by the window, so I stopped. Nothing. Must have been my imagination. Then I heard a whoop and holler, and whoopee! I had seen something all right, and then I saw something else. It was the comforter off of his bed. Next came a pillow. Then another. Sheets? Yep, those too. So I went running up the stairs to find that my son had stripped all of the beds and was throwing everything out the 2nd floor window.
I said, “What the heck are you doing?”
He said, “Watch Mom!” and there went my electric blanket.
He was throwing things so he could watch them float in the air. When they hit the ground he looked up with a big goofy grin and said, “See?!”
I said, “How about them apples. But next time do you think you could wait until it’s not so muddy outside?”
Brad came home and asked why all of our stuff was on the front lawn. “Welcome to Spring Break,” I said, “And it’s a fun day.”
Then there are the school breaks that are unplanned. Like when Charley was about 11 years old and we had just moved to Parkersburg, West Virginia. One morning I was walking around our apartment wondering what to do with myself. I won’t ask that question again, I promise you, because just as I was thinking about whining, the phone rang. It was the school requesting the honor of my presence, immediately. Every parent knows that parenthood isn’t pretty, but being summoned to the school is the kiss of death.
So I raced down to the school and there was my son, isolated in a classroom all by himself, sitting in a chair in the middle of the room.
The principle took me into his office and proceeded to tell me that Charley had taken off his pants and had thrown them out the second floor window, and there are strict school policies regarding that sort of behavior, and he should not be let out on an unsuspecting public, and, and, and… the blue jeans had landed on his head. Oh Lord, I wanted to laugh so bad it was sheer agony. But I knew it was serious so I didn’t dare.
When they took me to the room where they were holding him, I opened the door and there was Charley, sitting in his underwear. Give me a break. “Hi mom!” he said. He didn’t have a clue that he had done anything wrong.
I said, “Son, where are your pants?”
“School man,” he said.
So I marched down the hall to the Principal who proceeded to explain to me that he just couldn’t have students running around without their pants, so I asked him why he didn’t give him back his pants and have him put them back on immediately. It seemed a little weird to me that the way to deal with a kid throwing his pants out the window was to keep the pants.
So I took the pants and went in search of my son who said, “I cold Mommy,” when I walked in the door, and I said, “Well I guess so, it’s all of 33 degrees outside, and here you sit without your pants. And might I suggest that you keep them on this time?”
He thought that was pretty funny.
I said, “Charley, what did you do?” I knew what he had done but I wanted to hear it from his own lips.”
He said, “I play joke on teacher!”
I said, “Son, you missed the teacher, and you got the Principal. Bad move.”
He said, “Oops.”
I said, “Son, next time you want to play a joke on the teacher, hide the chalk stick or something, okay? Don’t take your clothes off.”
He shrugged his shoulders and said “Warry Mom.” (That’s code for Sorry, Mom).
I told him I wasn’t mad at him but that I would be if he ever did that again. Then I took him home and made him work around the house for the rest of the day, scrubbing the bathtub, the kitchen cabinets, and anything else I could think of that would help him remember the error of his ways.
At one point he came out to the living room with a kitchen towel on his head. He said, “Mom, ever, ever again.” Which in Charley verbiage means, “Honest Mom, I’ll never do it again!”
And he wouldn’t, at least not at that school because they suspended him which meant that he was home from school for several days, and aye-yi- yi. I didn’t much like it when he was off school then and I don’t much like it now. He doesn’t have friends to hang out with and it makes for a long week around our house. At first he’s real excited about it and goes over the plan with us just to make sure he’s got it right.
“This school’s out?”
And I say, “No school.”
“Work off?”
And his Dad says, “No work.”
We can hear him in his room talking to his DVDs. “Guys, work off. This school’s out!”
“I go Dianne’s house?”
“No son, not today.”
Brad and I are cowards. We admit it.; we scatter like bugs. When we hear him talking the Dianne Plan, as we call it, we go into hiding. One of us pretends to be dressing in our room. The other hides in the bathroom for a while. Maybe he’ll forget. Maybe he’ll get distracted by his movies. Maybe he’ll disassemble his radio. Maybe…
Maybe he’s in his room.
Fat chance. Just when we think it’s safe to come out, we turn the corner to find him sitting on the couch waiting with his big blue tote, grinning from ear to ear, “Whelp, I go Dianne’s house now.”
And it’s a fun day!
We’re in recovery mode around here. Brad and I are sort of taking shifts shutting our eyes and resting and then looking in on Charley to make sure he’s okay. He seems to be resting okay for now.
Missy Cat is worried about Charley. She’s sitting outside his door waiting for any sign of movement. I don’t know why he won’t let her in his room, she’d be such good company for him, but he makes her wait outside the door, even though Missy Cat is his best friend.
I heard a popping sound coming from his room and wasn’t sure what it was until I reached over and picked up a water bottle from the table next to my bed. I heard the same crinkling noise when I squeezed it to take a sip and realized he was chugging the Crystal light orange drink I left beside his bed in case he woke up. I open the door and sure enough he’s sitting in the middle of his bed.
“Mom, who tookin’ my teeth?” he says.
“They removed some of them at the hospital, remember?”
“Oh yea,” he says. “Mom, my teeth hurt.”
“I know they do son, I’m so sorry. Do you want to come in my room with me?”
“No, I big boy. I no cryin’,” he says.
“It’s okay to cry if you want to, I know you are hurting,” I told him.
“That’s okay Mom,” I stay here.
He’s back asleep now so I’ve crawled back into bed hoping for a little more rest. I believe it’s been all of 5 minutes when I hear the door open. And we’re off to the kitchen in search of chicken. He must be starving. It’s been over 24 hours since he’s eaten anything, but I can’t allow him to chew so I offer him some Spaghetti O’s which he snubs, and some chocolate milk which he takes back to his room.
Its morning now and I’m sitting on the couch drinking a cup of coffee. Haven’t had much rest but can’t seems to sleep either, and I’m thinking about going back to bed again when I hear footsteps in the hall. They are very light, not making much noise, just sort of shuffling. Around the corner comes my son. He has his arms stretched out in front of him but his eyes are closed. Well, sort of. He’s walking in my direction, kind of like a mummy. It looks to me like he’s sleepwalking.
“Son, are you awake?” I say.
No response, just shuffling of the feet in my direction.
He stops when he’s right in front of me and just stands there with his arms extended.
Okay, now this is weird.
“Honey, you okay?” I say.
No response, just deep forced breathing.
Suddenly just as I’m about to stand up to see if he’s all right, he leans down and gets close to my ear.
“I a zombie,” he says.
You’re kidding, right?
“I are a zombie!” He starts to laugh.
Well someone appears to be feeling better.
Several hours have passed and Dianne has stopped by to see how the patient is doing and to tell him that he can come to her house real soon but that he has to recover first. Dianne leaves and he steps out onto the porch where he sees Jane who walks across the lawn to give him a hug and reassure him that she’ll come to his birthday party next weekend.
He seems to be doing pretty well, despite all he’s been through and manages some malarkey for her benefit. About 15 minutes has passed and he’s laid down on my bed. He’s up and down all over the place. One minute he’s doing fine and the next he’s in agony. I suppose this will go on for a few days but for now he says he’s hurting again and is calling my name.
“Mom!”
I go check on him and he wants me to lie down on the bed beside him and hold his hand for a while. It’s storming and raining so hard that it’s knocked out the satellite on our TV. Charley doesn’t like thunder and says, “I scared Mom.”
I tell him its okay and that it’s just a little thunder boomer, and he starts playing with my face. He pinches my nose and then my cheek. Then he pinches my lips together. I make a fish face at him and he says, “Again!” So I make another fish face, this time like I’m a guppy.
This goes on for a while and he says, “Mom, stop bugging me.”
“Then stop playing with my face.”
“No not,” he says.
“Son, I hate to have to tell you this, but my face is not made out of silly putty.”
“Yes I are,” he says.
“Do you know what silly putty is?”
“Yes” he says.
“What is it?” I say.
“I don’t know.”
Now we both start to laugh.
“Stop bugging me,” he says again.
“I can’t, it’s my job to bug you, that’s what Moms are for,” I tell him.
Kaboom! Another crash of thunder and this time with lightening.
“I scared of storm!” He yells and puts his hands over his ears.
I say, “Then go under the covers and hide, it can’t find you under there.”
He pulls the covers over his head, so I put my head under the covers and talk to him. The rest of me is freezing because the fan is blowing on us and the only part of me under the blanket is my head.
We banter back and forth for a while and I notice that someone is getting sleepy and is starting to nod off.
The last thing I remember is Charley covering me with a blanket and turning out the light.
I manage to say, “Son, you okay?”
“Go back to sleep Mom,” he says and shuts the door.
It appears he’s not the only one in our house who needs to recover.
