Schoolcamp (Day Four, part 2)

Sunlight starts its slant across the carpet of my office, and outside my window the Times Square billboards get ready to take over for another night. Threw my lunch wrapper out what seems months ago.

Email from the lady at the NYC Department of Education: “I had asked the same question but have not received a response. Mr Stimpson and myself reached out to someone from the state – however she was not able to give me an answer.”

Seems to be some question of Alex existing anymore as a person with special needs, at least in the eyes of Albany. From our service coordinator: “Lady from the state is still trying to figure out what the hold-up is. She doesn’t need anything from me today but will touch base tomorrow when she tries to find out a bit more. She is working on it.”

Jill: “this is a TERRIBLE part of the system. Very broken. (screaming on the inside)”

Oh yes, and continuing October’s Blue Moon specials, our car’s been recalled. Something about the engine blowing up. We start arranging for Uncle Rob to drive us and Alex up to the school early next week. “He can do it on Monday,” says Jill. “I don’t know about other days…”

I break down and dial the lady from the state. She answers. “I didn’t forget about you,” she says. “It’s just that nobody has told me much so I had nothing to tell you.” It’s just that he hasn’t received hard services from us in a while.”

“Can you give me an example of hard services?” I ask.

“Umm. Community habilitation.”

“He gets that through his agency.”

“Right,” she says.

A jargon f-up. I put our service coordinator in touch with the state lady. Emails keep flying. From our lawyer: “I don't understand: If Alex gets services through the agency, how come the state is unaware of him just because the services don’t come directly from them?”

A glitch so deep it mystifies a seasoned special-needs lawyer. Terrific.

I don’t understand.

I got a number.

Have you considered going up to Albany tomorrow and demanding to speak with someone in the OPWDD office?  This may force them to answer your questions...

I learned 16 years ago in the hospital that it’s not as easy to “force” something as it looks on TV.

Jill: “OMG fingers crossed fingers crossed. What are the odds that The One Person in albany who can move forward on this is just out today and tomorrow?”

I type my last mass-CC as darkness gathers, much as it ever does in Times Square, outside my office window: “As we come to the close of this last day before the last day before Alex begins his work at his new school, I want to see if anyone has heard anything about Alex’s CRP from the state or anywhere else – and what we can do on Friday if there’s still no word.”

That night at home, I watch Alex as he sits on the couch, hunched over his iPad, tapping the screen. He will never know how many people thought about him today or why, and if he could know he probably wouldn’t need the good school where his window slowly closes. 

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.