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.”
