Schoolcamp (The Nick of Time)

In one moment, they will be subjected to a gift most humans never receive in a lifetime. For one penny, they will be able to look into the future. 

The time is now, the place New York City and the burning issue at hand the imminent residential and educational future of a single young man who happens to have autism. This day begins like all others lately: with email.

Jill to Uncle Rob: “Thanks for stepping up but there is no way we can go Monday  in fact we’lll have to rent a car - school says it’s an overnight, so whenever we do go, we’ll drive up, stay locally, see alex again in the morning and then return home … ahhhhhhhhhh maybe one day i can stop screaming on the inside.”

Maybe. Soon as Alex gets what Albany is calling a CRP clearance. At 10 a.m. the tireless NYC Department of Ed. lady CCs me a line: “I just spoke with a woman in the state who said that since Alex is getting family services through the state and his profile has not been reviewed since 2002 – they wanted to review it again. I faxed her over the recent medical and the Neuro and the Psychiatric. I asked her to please let me know if it is not enough. She is hoping that this will be resolved by today.”

From the school admissions officer herself, as lunchtime looms. “Just checking in to see if there is any update? Hopefully we will hear something today. Also wanted to see the status of his IEP amendment, if we were to get approval today and be able to admit tomorrow, the IEP should reflect tomorrows date. Let me know if there is anything I can help with!”

A few minutes later Jill calls. “They expect him there tomorrow,” she says.

I start to know how people feel as they get off the bus for the first day of basic training or before they start down the aisle: This may be the right thing or it may be the wrong thing, but it’s going to hurt no matter which. “No, it’s a conditional, Jill,” I tell her. “It says, ‘if we were to get approval…’ If. Doesn’t say they’re going to get it.”

Is this a grammatical conditional? I think I did know once.

Two people permanently enslaved by the tyranny of fear and superstition, facing the future with a kind of helpless dread.

On my lunch hour I go to the office of Alex’s neurologist, trying to straighten out the last of the prescriptions the school needs to take Alex. The doctor’s office has no record of me requesting a prescript. The nurse invites me through a back door “so we can talk privately” and it feels a little like the opening of a porno movie until I ask if she can just print a voided copy of Alex’s current prescription for the new school’s records.

She replies that the doctor will be in Tuesday and writes all my important details in pencil on some paper she then folds three times. When I get back to my office, Jill suggests the doctor fax the document directly to the school and save me another trip through the back door. Good idea.

Tick tock. Should we stay here until two-thirty?

Try again.

Should we stay in here until three o'clock?

You may never know.

Jill emails. “‘Can we leave tomorrow??’ You know. The diner, the car, Shatner. I never imagined this. Just sitting here WAITING for some entity to say anything at all … while we scramble for this or that ... no. I didn’t see that one coming.”

Me: “It has been indecided in our favor.”

I know all parents feel pressure: schools, friends, the right potential spouse. I don’t mean to sound self-involved (any more than normally) but what’s at stake here can’t be undone by a transcript or a divorce court. This school is Alex’s best shot, we think right now, for the kind of adulthood right for him, one that blends vocation and protection in the perfect measure.

The stakes here are not comfort or a park bench, but merely a better shot at no park bench for a while. Surely the universe can see we’re owed a tiny favor?

3:01 p.m.:

“Congratulations! We received word that Alex was approved for CRP Placement. We would like to bring him in tomorrow. To do so we will need the IEP completed and finalized with tomorrow’s date. We will also have you stay locally overnight. Please let me know if there are any questions!!”

A couple fewer, it now seems, that we had in recent days. Now we can get in the car and go.

 

Schoolcamp (Day Five)

Alex spends the evening over his iPad, eating his corn-on-the-cob, taking a bath, crashing by 10. Jill does not crash by 10 or even 11, but does feel better after hearing of kids who were hung up for weeks in this school’s admission process.

Just like the transfer to another hospital for Alex, almost 16 years ago. We hammered and hammered for weeks and months and were just one more exhausted night from giving up when the transfer was suddenly begun and done in just a few hours on a Super Bowl Sunday.

“I hate these times,” says Jill, “when you don’t know what you’re going to be doing in two days. I know you say you never know, but sometimes you have a better idea than at other times.”

Pretty clear which times these are. Next day it’s back to email.

“Let’s hope for the best!” the school admissions officer writes. “We would do an afternoon admission, arrival at 1:00 to the house. We would have a small team meeting and therapists will do mealtime and stair assessment. You will have time to set up Alex’s room before you head out to have dinner and get some sleep.” They do seem to understand priorities.

Unlike some people. From the lady at the NYC DOE: “I spoke with someone else in Albany who mentioned that a re- application for eligibility may need to be done for Alex.” I like this lady; she’s starting to attack this with fire. “I think this is what the state needs,” she tells me when I phone, “and I’m not waiting for the state to finally get around to telling us...”

We jaw about the plausible idea that the this state department – which made headlines early this year when their fledging director abruptly resigned, citing budget problems – is pulling a Medicaid Waiver move and suddenly demanding documentation where they demanded none before. This if true forestalls for a few months at least various legal obligations to pay for services. Multiply that by every special-needs kid in New York and you’ve got a chunk of your budget back. Better than funding Willowbrook but come on! Then she and I run out of time to chat.

Jill: “WTF re-app for eligiblity?? from what i understood that sounds wrong ... Well i have some work to do here so i am NOT checking email fro a bit.”

Me: “Good. Let the system we built over the last two days do its work while we do ours.” Wasn’t that wise? I don’t follow my own advice and instead email our lawyer.

“What are our legal options if Alex misses the window of admission because of the state’s tardiness in making a decision?”

“Honestly,” the attorney replies, “I am not exactly sure. I would have to do research and see if a hearing officer can order the state to act within a certain period of time and/or issue any kind of penalty ... “ 

“Welcome to hell,” Jill writes, deciding not to work after all.

“Oh, it’s not that bad,” I reply. “Nobody’s stopped breathing. Alex has a number of things set up this fall to keep him busy and learning. It’s just paperwork and people being prissy; something will crack sooner or later. Just make sure it’s not you.” Wise. By mid-day Friday, I don’t even dare shut off my cell phone to charge it.

Friday. Chinese night. “I am freaking out,” Jill writes. “Don’t get three dishes. Just get chi w broccoli and the chow fun because believe me I am NOT hungry. Maybe the appetizer, but I don’t know. Am freaking out pretty much nonstop.”

One flower on this bush: an exchange with a mom whose boy is already at this school. He and Alex went to preschool together. “Just wanted to let you know that Alex has been accepted (with a very short deadline),” I email to her. “We’re more convinced than ever it’ll be great for him. Right now the only hangup seems to be approval from Albany, with folks nudged on today with no results I know of. Alex is slated to be there starting Monday if Albany comes through.”

“How exciting,” she replies. “It’s such a long process, but you are almost there! It all happens so fast when they have an opening.” Begun and done.

She writes again in about an hour. “We just called our son’s house to check up on him and found out that Alex is moving in there! Small world. They had a number of new kids there in the last month or two. We are very pleased with the staff in the house. Everyone is really caring and attentive. It’s all a little overwhelming at first. Let us know if you have any questions.”

Here’s a vet telling me the deal is done. Is it? Will he sleep at home in a week or will his bed sit cold (and likely still unmade) in a dark room? “Our kids as neighbors!” I write to her. “Wow. It’s like a sitcom.”

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.