I hadn’t planned on staying up this late (It’s 1:00 a.m.), but then, Charley’s upset, and when he’s upset, the house is upset.
What happens is this… One week before school. You-know-who is pumped up. He can’t wait to get back to school to see his “fwents.” The problem, is that his friends graduated last May. All he’s talked about all summer long is that he’s going to graduate on May 18th.
“Me and CwisKabo (his name for his best friend), gwazuate May eighteenf.”
We tried to explain it to him.
“Charley, Chris already graduated this past school year.”
“Yes I do,” he says.
“This means Chris won’t be in your class this year.”
“Yes I are.”
Brad and I look at each other with that look parents sometimes give each other. “I don’t think he gets it,” Brad says.
Charley is sitting on the couch suffering through having to share the TV with us.
“My school bus dwiver upin’ me amowwow.”
“Yes, the bus is coming tomorrow.”
“I see Dianne.”
“Honey, Dianne retired last year.”
“Retired, son. It means you will have a new bus driver this year.”
“No not,” he says.
Day one: The bus pulls up. Brad and I go to the end of the driveway to meet the bus driver.
Charley gets on the bus with his CD player (walk-man style), and his headphones attached to his ears.
Later he gets off the bus. Same headphones. Same CD in hand.
Two relieved parents. Day one complete. Every day it’s the same routine. Everybody’s happy.
Two weeks pass. Still no word about the CD player. Everybody’s still happy.
Looks like it’s going to be a great school year.
Week three. Someone (the bus driver), decides to change the bus rules. Well, everybody was happy.
Brad calls me at work to let me know. “Charley can’t listen to his CD player on the bus anymore.”
In Charley's words, "Holy cwap, Batman." That’s the card we play to get him on the bus every morning.
“They are afraid that if the CD player isn’t secured, it could injure others on the bus,” Brad says. “They said that he can take the CD player as long as it’s in his backpack.”
“Can he listen to his music as long as he doesn’t take it out of his backpack?”
“Nope. His headphones have to be in the backpack too. Oh, and one more thing. He can’t take his soft drink on the bus in the afternoon unless it’s in the backpack too.”
That’s his reward at the end of the day. He gets to go to the vending machine and spend his dollar if he's been good at school.
“So let me see if I understand this,” I said to Brad. “He can take these things as long as they are zipped up in his backpack because they are afraid someone will be injured if there's an accident?"
“That’s what it sounds like,” Brad said.
“Will the backpack be secured?”
"So we're not afraid someone could get hurt by a flying backpack?"
All I can say is brace for impact. And I’m not talking about the gulf. Although, that's where our thoughts are these days, and rightly so.
Another call from Brad. “Charley just got home, and he’s crying.”
I know why he’s crying too. It’s not entirely because of the rule change, although that’s part of it. It’s because up until now he’s been allowed to take his CD player and his drink on the bus.
Charley can’t reason that mid-stream the rules have changed and he can no longer do the things that make him happy on the bus, and this translates into thinking he’s being punished.
“Why I twoublt?” he says.
“You’re not in trouble, honey, it’s a rule change.”
“Yes I are. My teacher bossin’ me. Her said no songs again.”
“Son, sometimes things change. It’s not Mrs. Bennett’s fault. It’s just the way it is.” Of course, this makes no sense to him. The one who delivers the bad news is the guilty party, right?
He lies down on the couch and stews for a while, but at least we’ve had The Discussion. I give it a proper name because it takes on it’s own personality. It’s not a one-time thing. It will live in our house for ever and ever. Amen.
A half hour passes. We have The Discussion again.
And we go at this about every half hour or so until it’s time for bed.
I’m exhausted. Can’t wait for my head to hit the pillow.
11:30 p.m. I’m half asleep when I hear his bedroom door opening. Then closing, then opening again. And again and again. Over and over.
He’s hauling everything he’s brought from his room to the living room, and then back again. He can’t decide where he wants to sleep. A sure sign that Charley’s not happy.
“Mrs. Bennett says no sleep on couch,” he says when he sees me standing in the hallway. (Mrs. Bennett is Charley’s teacher. He must have confessed that he’s been sleeping on the couch. He started that back in March when he had dental surgery, and we haven’t been able to get him to sleep in his room since.)
“I sleep my woom,” he says.
“Well, could you hurry up? I need some rest.” Mama’s not happy.
12:00 a.m. Still hauling CD players back and forth, and tote bags filled with CDs and VHS tapes.
12:30 a.m. – Still going at it. Only, now he’s carrying his TV back and forth. And, there’s a fan in the middle of his bed.
“Charley, you can’t sleep with a fan on your bed. You have to put it on a table.”
“Mom, go,” he shuts the door so I can’t see, but that does not deter me from standing my ground.
“Charley, I mean it. Either put the fan on the table, or Dad will take it out of your room.” You can bet Brad won't be happy, not if he has to get out of bed.
He opens the door a crack. “Mo-om, geeze. Go.”
“And you’ll put the fan on the table?”
“I’m giving you ten minutes and then I’ll come check on you again.”
Thus, this blog. I take to the computer room to wait the ten minutes, and what do you know, I’m looking at FaceBook, wasting my time, chatting with the poor people who didn’t see me online in time to log off before I could cyber-stalk them, declaring once and for all that I am, indeed, annoying.
Before I know it I’m writing about how tonight I don’t like my life. Then, since guilt is the boss of me I hit the select-all button and delete the whole stupid thing and find myself giving step-by-step instructions on how-to-not be me. Pity party, anyone?
But that doesn’t do it either, because I’m the luckiest person I know. All I have to do is look at his face and it snaps me back into grateful. So I delete that too, and yes, there it is. The ten-minute deadline, and I crack the door to his room and find the fan on the table across from his bed.
He looks up and grins, and says, “Hi Mom.”
He’s sitting in the middle of his bed, fiddling with his CD and DVD players. He works at it until he gets them in sync. One plays the sound track, while the other plays the movie. It can take hours, but he doesn’t give up.
“Turn off the TV and go to bed. You’ll never get up in the morning.”
“You’re slipping,” I say.
“It’s only 1:00. You used to keep me up all night.”
“Mom, back-a-bed. You sleep.” Slumber party, here I come - or not. I know only too well how stupid it would be to sleep when he’s unsettled.
“Son, no one is mad at you. Go to bed. PLEASE.”
This is what the bus driver doesn’t see. He doesn’t see a household turned on its head, because what he should have done was to set the rules from the very first day.
What he doesn’t see is that routine is everything to a person with Down syndrome.
He also doesn’t see that Charley taking his CD player on the bus has become routine and now it’s not only disrupted the thing Charley knows, it’s disrupted Charley.
6:00 a.m. Charley is out of his room hauling CD players (the boom box kind), back and forth to and from the couch.
He’s percolating but not his usual peppy self. He normally banters back and forth with his Dad while helping him make the coffee. This morning Charley’s in slow motion.
There are things that make people like Charley move like the batteries are losing their charge. Things like fussing at him or trying to get him to hurry, or changing his routine without warning. These are the things that make him unsure of himself, deflate his trust, and run on empty. His world runs on happy.
“Let’s review this one more time. You are allowed to take your CD player as long as it’s in your backpack.”
Brad gets no response. Charley's hiding behind his TV mulling this over.
“Son, it’s time to get ready for the bus.”
“No tell me do,” Charley says. (Don’t tell me what to do.)
“I not a baby, Daddy.”
“I know that, but you can’t keep the bus waiting.”
7:55 a.m. It takes him fifteen minutes to put on his shirt and his shoes, take his pills, pick up his backpack, and head to the end of the driveway to wait for the bus.
That leaves Brad and me, and the unstable winds heading our way. Will he try to sneak his CD player out of his backpack during the bus ride? Will I have time for a nap before heading off to work this afternoon? Will he rearrange the house at 1:30?
We don’t know. Like Isaac, we don’t know where it’s going until it gets there. The only thing we do know is that it’s coming and we can prepare ourselves all we want, but more likely than not, we will be impacted.
One thing is sure; it will be anything but routine.