Schoolcamp (Day Four)

Thursday is the day of email.

“I do stress to all that the window of admission to this fine school is small. My understanding is that the state should've responded to this request 14 days ago at the latest.” Email far beats phone in the mess like this: no cauliflower ear or ring-a-ding tag; a potential paper trail, even if it is electronic; best of all, CCing to loop everyone in.

“Checking in to see if there's any word from Albany of Alex's CRP and where we stand regarding the quick IEP-update meeting this week? Thanks. Let me know there's anything we can do to speed things along.”

This 9:01 a.m. note receives a reply with the speed of the Internet – and not the speed of much else so far in this process: I will be out of the office today. If this is an urgent matter that requires immediate attention, please contact … And a name and number. I call.

“I don’t know if I can help you,” says the voice, “but I’ll check and have someone get back to you.”

Yet another new player in a bad comedy. To review, the residential school we think best for Alex wants him there Monday and can’t hold the spot for long. We think that’s great, the NYC Department of Education thinks that’s great, for all I know President Obama thinks it’s great (I bet he would if he knew Alex). But the state agency that holds the final rubber stamp just won’t slam it down.

“You may want to reach out to the agency director in your region to understand why the CRP approval is being held up,” the school admissions officer emails. “I’m not sure if there is a supervisor at OPWDD that you can reach out to Jeff? Does your attorney have ideas? Keep me updated!”

“Someone has to start screaming at Albany about why the eff no word from them,” Jill writes. “I see many many emails from EVERYONE on this. But Albany is very ... quiet. I can see why no one will release this woman’s name in that agency. She would be dead many times over.”

Alex’s potential school is clean, modern, some buildings on its scenic campus more like a ski lodge than a school. And it’s where, say parents, kids like Alex improve. Few schools like this fetch parents vouching for them. It looks like a place in the greater New York metropolitan area that knows it’s desirable.

Don’t think I’ve ever sent more CCed emails in such a short time. Are u going to call this office? They’ll have someone get back to us. I just got thru to someone here.

Me to our lawyer: “Just making sure the e-mail has brought you sufficiently up to speed in case you need to get involved. Please let me know if you have any questions.

From the lawyer: “Thanks for catching me up on everything, I think I have a pretty good idea as to the status. I’m not sure if having us write a letter will be that effective due the time constraints, however, I am more than happy to make some phone calls.”

Me: “Thanks for the note. I believe that this late time more questioning voices only help. Yes, and many thanks if you can inquire.”

Names on my CC list add up, reminding me of the old ICU emergencies when Alex was a baby in the hospital: He’d stop breathing and everybody and anybody dove on him. Me again, emailing everyone: “Assuming aliens land, the Royals win the Series and OPWDD clears up this glitch on Friday, what's our schedule for Monday? When do you we have to be at the Center and how long should we plan on staying?”

Jill: “What the f are we doing monday?”

Schoolcamp (Day Three)

I give Albany until 10:30 this morning to make up its mind, then it’s time for our lawyer, Elaine (not her real name). We engaged her months ago in case the NYC Department of Education hassled us over the decision to request a residential school for Alex.

The DOE greenlighted the idea; in fact, everyone greenlighted the idea until the state capital became involved. Elaine snaps up my call. “I knew there’d be a stage where we’d have to turn up the heat,” I say to her. “I think this is it.” I loop her in with the modern miracle of email forwarding:

“Basically,” I type as fast as I can, “we learned two days ago that Alex has been accepted at the school, which has an opening beginning next Monday. CBST is already setting up the meeting to update Alex’s IEP. We are also prepared to take Alex on Monday; the school also told us that due to demand the window of acceptance is necessarily short.

“The problem is the CRP. Mary (not her real name) at the DOE gave Albany the necessary report on 9/24 and as I understand it Albany had two weeks to issue a response. In short, someone is sitting on this. Any help you could provide to speed the process would be deeply appreciated.”

The IEP is a meeting to change Alex’s written educational to include the new school. This meeting involves assembling a lot of people who probably have their own lives and plans for the end of the week. My note is peppered with CCs.

The clock ticks into the afternoon and nothing. No one will give me the name of the right individual in Albany, leaving me to believe she’s (I do learn she’s a woman) key, if not the sole judge, to turning on the tap.

Meanwhile, Alex’s long-time winter-weekend camp wants to know if can come November 7-9. Under the potential new educational arrangement, Alex would no longer qualify for this camp.

“Yes!” Jill emails. “Say ‘yes’ to everything. We can always cancel. We have to be self-protective here. Let whatever’s easiest for us be our guiding light.”

3 p.m. I email Mary. “Checking in to see if there's any word of Alex's CRP and where we stand regarding the quick IEP-update meeting this week?” Mary’s out-of-office auto-response (out of office??) gives me another number. I call. A nice lady picks up and I explain the situation.

“I will check now and give you a call back if there is anything,” she says. I ask if I should Albany.

“No no,” she says quickly, “not you, not you.”

Jill emails. “Tomorrow is Thursday. I am very worried. Aunt Julie says, ‘CALL YOUR LAWYER!’”

“Me, too,” I email back. “I left a message for Mary this morning and forwarded two related emails from yesterday to Elaine and actually spoke with her. Emailing Mary again in a few minutes and looping in you, Elaine and the school.” Lots of names, numbers, details, the kind of stuff that just aces a news story.

“Ok,” Jill responds. “This is terrible. Seriously. Also are we having an IEP on Thu or Fri?? The school really has no right to say, ‘Be here next Monday.’”

Be here or somebody else will be. This is like moving: one thing down and 10,000 more to go. Except when Jill and I are done with these 10,000 things, we still have to move somebody who can’t move himself.

 

Schoolcamp (Day Two)

I never do write down the punch list. How many combs does he need? How can we possibly send enough hot dogs to last a lifetime? Will they feed him? Do they want both front and back of Alex’s Medicaid card? “Did you read the email?” Jill asks.

What’s a CRP? One lonely person in one state office handles the entire world, I’m told; Albany can torpedo this whole rigmarole. It’s enough to make me need CPR. “And maybe an EKG or an EEG,” says Jill. “Crap. As long as there is some holdup … ”

I check in with the school’s admissions person. My endless questions begin with how do we send enough pretzels and hot dogs to is all this in fact going to help ensure that Alex doesn’t die one day on a park bench? Let’s start off with, “Will I ever see him again?”

“Some parents bring the kids home every weekend,” she says. I know that story: I went to a bedroom college and the place emptied out every Friday night.

Want to go to bedroom college, Alex?

All of which hinges, I remind you, on the CRP. Just so we all stay straight, the involved parties so far are: me and Jill; the school folks; our social-service agency folks; and the lady at the NYC Department of Education.

The afternoon begins to melt and my morning email to the DOE remains unanswered. I email Jill. What’s for dinner? Shrimp or chicken? Who cares? How many times in Alex’s life have I waited on a call? In the hospitals when he was a baby at death’s door. When we tingled to hear from the our A-list pre-schools. When the first doctor finally got back to us with the word “autism.” Why should I Jill and I be put through this, when we’re the ones who’ll drive home with visions of the meltdown after he watches us pull away from the school?

“We’ll know a lot more in the next 48 hours,” says Jill. I feel like she’s said that every few days since I met her in 1990. But of course she’s only been saying it since Monday when I was on jury duty.

Squeaky wheel time: I get a name and number of the DOE woman. She picks up her own phone, so I know it’s going to go at least not too bad. There’s a bubble in her voice when I mention forwarding my morning’s email to her about the urgency of the situation:

“This is an excellent school that we feel will give Alex his best shot at a productive adulthood. Being excellent, this school is also desirable and of necessity must move on to other candidates within a reasonable time if Alex's documentation can't be put in order. Clearing his CRP as soon as possible facilitates his next educational step and helps our family make such a big change for him as easy as possible.”

I try to think about things in order. How definite is next Monday as his start date? Very definite. What has to happen between now and then? One answers: meds: “We ask you just send what you have,” says the school. “We’ll send some back home for when he visits.” Visits? In just the last 24 hours we’ve begun talking about Alex being so firmly at a residential school that he periodically goes home for visits?

Just to keep things hopping, by the way, Alex barfed on the school bus this morning and Jill had to go get him at school. Does he know? How can what seemed normal evaporate so fast? By 4 p.m., my head hurts and this all reminds both me and Jill of the hospital transfer 15 years ago: a spot suddenly open – Alex’s best shot as we saw it then – and a closing window and a paper to be stamped by somebody far away who had their own life and worries. I can’t even begin to shop for combs, but I do know more than I did this morning.

 

Schoolcamp (First day, evening)

Alex needs this move. Living more on his own, learning beyond just 3 in the afternoon. College. “Alex, want to go to college, want to go to school camp?”

I remove his iPad headphones. “Alex, do you want to go to college?”

“College.”

“Hold that thought, Alex.”

Telling Ned over the phone was a mistake. He sends me a text. “Tell my coach I won’t be at football practice this afternoon.” Ned would never miss football practice. I call him. “How are you, Ned?”

“Kind of sad and kind of happy,” he says.

The school emails. “Please see attached (includes packing list!) We will need the CRP approval and an amended IEP before the admission can occur. I will send out the SD letter but following up on the CRP is most important!” The CRP, near as I can tell, is the document that turns on the tap of state money for Alex’s new education.

Jill emails. “I emailed her … to let her know about our email from the school and they say that we don't have to do anything else at the moment (though I'll certanily [sic] let you know within a day or so if we don't hear back in which case we might well ask for your help - and thanks)” I wonder who Jill was writing to?

Just before dinner, Ned sits on our bed and hangs his head. “It’s quiet around here when Alex is gone,” he says, unable to even start his normal night’s two hours of homework.

Yes, yes it is quiet. In a few nights, Alex won’t be in his bed at 10. He’ll live somewhere else for the first time in almost 16 years in my life and for the first time in Ned’s. How’s a family supposed to handle this?

“Maybe with the school it’ll be the same way when people show up for jury duty,” I say to Ned. “There’s people there to help jurors settle in to the process. To the jurors, it’s just once or twice in their life. But the people there see thousands of jurors every month. It’s nothing they haven’t seen before.” Ned nods. I hope it’s like that.

Sad and happy. Alex needs this. “School-camp?” Alex says. “College?”   

What about food? What happens up there when he runs out of Utz Extra-Dark Specials or Hebrew Nationals? In some ways what Alex faces is a thousand times harder than Ned’s new high school, which is one of the toughest in New York.

Speaking of toughest, in the mail comes a recall notice for our car. Something about the engine catching fire. It’s a week for stuff that has never happened to me before; I respond with predictable language.

“This is the last week Alex will be with us for a while,” says Jill. “Let’s all talk nice.”

Okay okay. Just before sleep I tell Jill I’ll come up with our punch list in the morning.

 

Schoolcamp (First Day)

(For two years we've tried to get my autistic teenage son Alex into a residential school. He has always lived at home with us. The school we wanted was very selective and its waiting time long. We always knew the message could come at any day -- and we suspected that when it did we'd have little time to make it happen.)

I'm on jury duty – just a frigging once-every-72-months event – and all set up with my stack of old Fine-Scale Modelers and the first judge of the day is minutes from needing 100 of us to begin selection on a case when I get the text from Jill:

“School just emailed w anticipated opening for alex for next Monday. Things could change obviously.”

Obviously. We’ve spent almost two years shooting for this residential school, which has a great reputation. Like most things with a great rep in the New York City area, it’s also selective. We have seven days to get Alex ready.

Before we prepare Alex, I must prepare the justice system of New York City. Already registered for my duty along with some 150 others in this big-box room in the NYC Supreme Court building, I approach the lady behind the desk.

I usually don’t do things like this. Often I’ve put my family behind other obligations. Not now. It’s been almost two frigging years. The lady looks at me with sleepy eyes. “I’ve had an emergency family obligation come up this morning that will likely mean I can’t serve jury duty right now. Should I go right now to the County Clerk’s office?” Want to hear the entire story, starting with the neonatal ICU 16 years ago?

“I’ll have to pull you out of the system,” she says.

I soon phone Jill. “Meet in an hour outside your office for lunch,” I tell her with Kirk-like decision. An hour allows me time to wander the sidewalks (still a little lost in the Kirk fantasy) and try to sort out the suddenly bubbling questions.

Will he have a roommate? Can he take the iPad? He breaks headphones weekly. We’ll have to send him headphones. Who will help him open boxes mailed from us? What about his battalions of plastic animals? How many pairs of pants does Alex even have?

What do we tell Alex to, let’s be honest, trick him into even getting in the car to drive up there?

“Let’s tell him it’s a week at school,” Jill says over lunch.

“Let’s call it ‘school-camp,’” I say. She nods.

“The next 48 hours should see quite a few developments,” Jill says.

What about his after-school program and weekend winter camp that I scurried so to set up with faxes, emails and calls? Who’s going to teach him to shave? He needs his own electric razor. How much are they? How much shampoo do we send? I don’t go to the office that afternoon. The day that started in a jury waiting room peters out around 4 with me almost staggering in the hourless dusk of a day off the track. All I want by then is my family all together.

Then there’s Ned. Ned got himself into one of the academically toughest high schools in New York. By the time he gets home from football practice every night, Ned must shoehorn homework into the hour or two before bed. We thought Alex might be a school before Ned’s semester began. Now we wonder how long he’ll hold up his grades studying right next to a big brother who’s whooping it up over Elmo.

“Ned,” I say to him on the phone that afternoon, “remember last night when I said that great school for Alex probably won’t happen?”

“Yeah.”

“Well don’t ever listen to your father unless I tell you to. They’ve accepted Alex to go there.”

Silence. “Ned?”

“Forever?” he says.