Monday, June 23, 2014

ABC, IEP, CPSE, it's easy as 1-2-3



More than a year ago, I wrote a blog entry about how we decided to enroll Teeny in a part-time preschool. I was so scared, I don't think I slept for a month. But a few months later, I was writing another one about how great she did. She took so well to school that we saw immediate improvements in so many areas.




About three months into the year, the learning specialist who consults at her school mentioned to us that yes, Teeny was doing spectacularly, but she might do even more spectacularly at a school that was better equipped to address her many needs. She mentioned a particular school to us -- School A -- that was well-known nationwide and which had an integrated preschool program. (Side note: integrated means that the student body consists of both general education kids and kids with IEPs. Side-side note: An IEP, for those not in the know, is an Individualized Education Plan, and the way a child's special needs are addressed is outlined in that child's IEP.) This sounded magical to us because while Teeny learns well from her peers and we absolutely love love loved the school she was currently in, we didn’t want her to be the only child struggling. So we decided to learn more about that school.

We fell in love with School A's incredible resources, their well-documented experience and their interest in Teeny. Best of all, we loved the chance for Teeny to have her therapies in school, for her therapists to be part of a team in one location, and for her to be among other children who struggle with disabilities. And it didn’t hurt that if she were accepted there and the DOE mandated a program like the one they offered, the state would pay the tuition, saving us many, many thousands of dollars. We submitted our application, feeling pretty confident. We were told that if they planned to offer Teeny a spot, they would hold it until her IEP meeting mandated that an integrated program was right for her. But we didn't have an IEP meeting. We didn't have the evaluation process started or even scheduled for that matter. So there was a lot left up in the air, but the school seemed sure it would work out, so I didn't question anything.

At the same time, another someone suggested we look at other schools with integrated programs just to do our homework thoroughly. We found one other (School B) that looked fantastic, and the director was polite on the phone when I called her last November, but she wouldn't answer my questions or schedule a tour. She explained that her school followed a different application timeline than School A and they didn't tour parents or even really talk to them until after the IEP meeting. They only wanted to meet with families whose children had the mandate to attend a school like theirs.

School A agreed to handle Teeny's CPSE evaluations. I took this as a sign that we were in. We went through the whole process in about four weeks and the coordinator called me to schedule the feedback meeting, which, she explained to me, was for us to discuss the psychologist's report and their overall recommendation. I'd already read the reports myself. What more could there be to discuss?

We showed up at the meeting not knowing what to expect, but I knew exactly what not to expect. We were not expecting to hear from the admissions director of the school for another week, and our IEP meeting wasn't scheduled until the week after that. A week earlier, Teeny had had her playdate at School A, which couldn’t have gone better if we’d scripted the whole hour ourselves. I was confident they'd want her! So I was pretty shocked when everyone in the room was shifty-eyed, exchanging glances with each other but avoiding my gaze. It was pretty clear that they all knew something that Johnny and I didn't. The psychologist breezed in ten minutes late and the meeting got started, but I barely heard a word he said. I was sweating. The tension was palpable. I waited for the meeting to be over, and someone looked at me and swallowed hard. Before she even spoke, I knew. Teeny was not going to be accepted at School A.

I met with the admissions director a few days later to find out more. She was sweet and friendly and I couldn't help but like her. She explained that they loved Teeny and thought she would be a great fit, but that there were only two spots this year. Teeny was the third child on the list after two who were either siblings of current students or employees' children. She promised me that if anyone pulled out, we would get a space and that no matter what, there would be room for Teeny next year, should we want to move her from wherever she ended up. She answered all my questions and was kind and generous with her time. And yet my heart was in my throat. It didn’t matter to me how nice she was or much she loved Teeny if the school didn’t want her. It was already late May and it felt to me like time was running out. What was I going to do? 

Walking home, I suddenly remembered School B. I'd forgotten about them because of my (one-sided) love affair with School A but it was time to open up the relationship and explore other options. I called the director as I crossed 125th Street and got her voicemail. I knew she would not want to talk to us until we had our IEP but I had no time to lose. I was panicked. So I got busy.

I want to document what happened in the next few days because this was one of the scariest times I’ve had so far as a parent. If writing the details of what we went through helps one other family trying to navigate the special needs preschool system in New York City, I will be thrilled. The whole thing sucked for us even though we ultimately had a very positive outcome. When you think there is no appropriate place for your kid, you feel judged and you feel alone. You're afraid for your kid and you're afraid for yourself. No one gets what you're going through. And worst of all, there's nothing you can do. Nothing at all. You and your kid are ultimately at the hands of the DOE and the school administrators and you feel pathetic but you you end up essentially begging them to like you. Again, things worked well for us but at this point I felt like we were stuck between a rock and a hard place and nothing would get better. I couldn't get dramatic images of turn-of-the-century insane asylums out of my head. I imagined the worst: Teeny being placed in a school whose halls were lined with twisted-limbed, pinheaded people moaning and drooling and wandering aimlessly up and down the halls. How could I let the DOE send Teeny to a school like that? It was horrible. So if the process can suck a little bit less for you because of our experience, the time it took to write this all down will have been worth it to me.

So there I was, totally panicked. As if I didn't have enough on my mind, I now started to worry about the IEP meeting, which at this point was just a few days away. What if the DOE didn’t think School B would work for Teeny and instead placed her somewhere terrible? What if they didn’t give her enough therapies? We didn’t have a lawyer, and I had no idea what to expect. Everyone kept asking who our assigned DOE administrator was and when I told them, they’d smile and say “You’re SO lucky. He’s one-of-a-kind.” But still, I was scared to death. I had always been accepted at every school I ever applied to. How could this be happening? Years ago, I had applied to Harvard, Yale, Penn and U Chicago and gotten into them all. How could it be harder for a two year old to get into Schools A and B? I didn't understand why this was so hard, and I didn't believe anyone when they said it would get better.

Someone suggested I call a consultant. It turns out there are people who work as very high-priced consultants to New York City parents of special needs preschoolers to help them get into a school. It’s that cutthroat. One consultant in particular, S, offers a free half-hour phone call before the meter starts running. I was sure I’d get her voicemail, so I tried her while I was riding my bike down Broadway on my way into the office the next morning. She picked up on the first ring and started talking right away. I was so surprised that I almost slammed into a truck double parked in the bike lane. Out of the corner of my eye I saw the truck driver give me the finger, which I totally deserved but was too captivated to acknowledge. Ignoring him, I sat down on the sidewalk. I got out a notebook to take notes on everything she said. This woman was incredible. She talked quickly and didn't mince words, wasting no time and diving right in. She told me I was well researched, and she also told me I probably wasn’t going to need her services. She did a few very important things for me in that half hour. First, she told me that no one ever gets into School A, so I should not take our experience personally at all. She told me that School B was similar and we had to be realistic about our chances there too. She ran through all the other schools that could be viable options for Teeny and we talked about their pros and cons. S gave me the names of the administrators at each school and a little information about each of them. She shared some extremely valuable language to use when talking to them, and she walked me through what might happen at the IEP meeting. When she heard who our administrator would be, she gushed. “You’re so lucky! Oh, you’re not going to have any trouble.” At the end of our time she said she'd happily take my money if I wanted to work more with her but assured me we were not going to need her right now, so best of all, she gave me hope.





That day, I made a million phone calls. I talked to the admissions director of every single preschool in Manhattan that works with kids with IEPs and made appointments to see the ones I thought we’d like most. I wrote up a list of pros and cons of each school and quizzed Johnny relentlessly on what was most important to him in a school and why, and then picked apart his answers until he told me just to decide myself. I emailed everyone I knew with a special needs kid and scheduled  calls to interrogate friends of friends with kids who attend or attended any of the schools on our list just to hear their experiences. I researched a whole host of schools outside the city as well, which had me looking into real estate in Westchester and Connecticut just in case. In my mind, we moved all over the tri-state area in the course of one single evening. Then I printed out and read whatever documents on CPSE I could find. I learned what a "12" classroom is and an "8" and the difference between a 12:1:2 and 12:1:3 and why a self-contained classroom could be better for Teeny than an integrated classroom. I learned that if you sign the IEP in one place, you got a 10-month program and if you sign in two places, you've been given a 12-month  program. And best of all, School B called me back in the middle of all this and said that if the DOE administrator felt Teeny was a good fit for them, there would be a space for her. So now there was a lot riding on this meeting.

Two days later we had the IEP meeting. We dropped the girls off at school and headed over. I was dressed casually, but not too casually. In one hand I held my coffee and in the other I carried the binder I had put together at a friend’s recommendation. The binder was fat with a packet of adorable photos of Teeny I had printed, multiple copies of her therapeutic evaluations, letters from her medical team, prescriptions and other documents I’d printed out about CPSE, the IEP meeting, the various schools, and so on. It was white with a clear plastic cover into which I slipped the cutest of the photos and a name tag with TEENY printed on it. And I’m so glad I did this. It’s the first thing I would recommend to anyone going through this process. Get yourself a binder like this. Be prepared.

We waited nervously in the waiting area where we were joined by Teeny’s EI service coordinator, the CPSE coordinator from School A and the learning specialist affiliated with Teeny’s current preschool. The waiting area had a few plants and some cheap but brightly colored posters from the Metropolitan Museum of Art on the walls. This was a huge improvement over the barren and lifeless Department of Health offices that house the Early Intervention program but it didn't do a thing to cheer up the sour, depressed staff members we saw: cranky, hating their jobs, hunched over their smartphones, ignoring their surroundings. 

Our assigned DOE administrator, M, fetched us and made small talk as we followed him down a hall and up a flight of stairs to a tiny office, maybe six feet wide and ten feet long that was mostly conference table. He squeezed into the far corner and pointed to a purple visitor chair opposite him. “Mom sits in the purple chair,” he said, with a nod in my direction. I sat.

M was serious. He opened the meeting with very formal language. He noted the date, the time, the address, and that we were convening to discuss the IEP of our Teeny. He asked me to confirm the pronunciation of her name. "TEE-ny," I repeated for him, and wondered vaguely if the meeting was being recorded. M turned his attention from the paperwork and looked up at us. He asked each of us to describe her in detail, and we did. He asked the learning specialist to describe Teeny's learning, and then it was our CPSE coordinator's turn to summarize all her evaluations and her classroom observations. He nodded a lot and scribbled lots of notes. His questions were pointed, his comments accurate and I could tell that he had already carefully read all of the paperwork I'd sent him. I was impressed; this guy was prepared. Still, it was uncomfortable. I was scared and didn't know what to say or do next. I took a lot of notes too. There were pauses. Uncomfortable silences. At points I babbled helplessly, wanting to make Teeny as real and three dimensional as possible. M asked to see pictures and I had them ready. His eyes lit up. "She's adorable," he said, and I believe he meant it.

Soon it was our turn to listen. I held my breath with anticipation. M put down his pen and cleared his throat.  My whole body was tense. I was almost afraid to breathe. First, M deemed Teeny a preschooler with a disability. He summarized all we'd described and all he'd read and he said that in his opinion, Teeny would do better in a self-contained class of 12:1:2 next year than she would in an integrated setting, but depending on how she does, there is the option of moving her into integrated after a year. He said he wanted to see her have the maximum related services (meaning that she would get her PT, OT and speech each three times per week, or the maximum the school offered). It gets better. He also awarded her a full-time paraprofessional to assist her with mobility. This was something I didn't even think of asking for. I was speechless and afraid I might cry. He talked about her commute; she'd be taking a bus and he wanted to make sure that it wouldn't be more than one air conditioned  hour each way so he added that to the IEP document. He explained that Teeny would need a wheelchair to manage the lift. As we discussed this, I had a question about how she would get on and off the bus. "Hmm, I'm not sure," he said. He picked up the phone and dialed School B. "I'll find out for you."  The director was with another family and couldn't come to the phone, but he left a message. I told him I had been calling her but hadn't heard back in forever. M laughed that a call from him worked like the bat phone, assuring me she'd call him back momentarily. 

"So, School B?" I began. He nodded and said that School B would be a great fit for Teeny's needs. We all exchanged glances around the stuffy little room. What? Just like that? Could such an incredible victory really have been this easy? I half expected him to wink and shoot a forefinger at me, saying "Heh, you actually thought I was going to give you all that? Yeah, right!" But no. This was real. And M kept going. He had us sign another form that protects her EI services through the end of the year just in case there was some issue with her transition or with the school itself that would prevent her from getting her services through CPSE.

"Wait," I stuttered. I knew I had been right, it was too good to be true. "What do you mean, a problem with the school? You mean they might not take her?"

"No, no," he smiled. "It's my job to protect Teeny's services no matter what happens. This is just in case of some totally unlikely event, like if School B burns down. I have to make sure the child is protected in case another part of the system should fail. It's my job to ensure that the Department of Education is providing the very best services for her that it can." 

We signed a lot of papers (in two places, not one), I offered him copies of Teeny's therapy prescriptions from my binder (which he took, thanking me and noting with a smile that my binder was fabulous and that I was exceptionally well organized) and we began to wrap up. He recommended that we check out a couple of schools to make absolutely certain that School B was the one for us. He explained that this IEP was still a draft, pending our input once we'd seen the schools. He told us that we could change anything we wanted, that he was always available to us via phone, email and scheduled meeting, and that if she needed more services to just let him know. He reminded us that the DOE would be paying for all of her educational expenses (although that part I had most definitely NOT forgotten) and explained the rest of the process, letting us know we'd meet at least yearly (more if we needed to) and that  he would help us as we transitioned to CSE, the next stage of special ed. Then he gave me our copies of everything, shook our hands and walked us back to the elevator. And that was it.

Out on the street, we all squealed. Omigod! I screeched. Could this be real? Here was a man of integrity, working for the DOE. A lone island in a sea of disconnect and disengagement. I don't believe in angels but I sure felt like I'd just spent the last hour with one. Everyone was smiling and laughing and congratulating each other. The more experienced members of our team talked about how M really was a rare breed. We were truly lucky; other families they knew had struggled much more in their meetings. And then someone said "By the way, did you know that you were assigned to him just because you live in district 5 and your last name starts with C?"

Whoa. I was grateful, to be sure, but my heart broke a little for all the children whose last names do not start with C or live in our school district. Not every child who needs a spot like the one Teeny was given at School B will get one, and in fact most will not. I was sad for all the others, the nameless and faceless not-Teenys and their parents who might be feeling fear and intimidation where today I was feeling relief and elation. Until I remembered that School B still had to accept her.

It was an agonizing two weeks before we were able to tour the school and meet with the administrators. We liked the school but feared the admissions director's impermeable poker face. I wondered if she ever cracked a smile. She was dry and formal and very by the books. I was terrified that she hated us; I must have said something wrong, or maybe Teeny just wasn't charming enough. Once I got home, I called every remotely connected "inside source" I had and grilled them about what they thought would happen. No one had any real answers and the director was not calling me back. Time was passing. We checked out the other schools M suggested we see and none was a viable option. I was in agony and I started to feel very, very discouraged. Days passed.

A week into our family vacation earlier this month, the call we've been waiting for finally came. I almost didn't bother answering the phone when I heard it ring because I was on vacation after all, but then I noticed that the number was local to our hometown and not pre-programmed into my contacts. I snatched the phone and answered on the fifth ring.

"We'd be delighted to have Teeny join our school in September." And with that, the application process was over. She's in! Now I can focus on getting Bee into kindergarten. It never ends.

 

3 comments:

  1. I'm glad this part is behind you. I hope Teeny loves the school and makes a ton of progress there. Kindergarten will be here before you know it, but try to take the days one at a time and not worry too much about the future. Things have a way of working out.

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  2. I know it's been a long while but I am a mom with a special needs child who is about to tour a school and have my child evaluated to get into it. I am also very nervous. I hope they would accept my child. Thank you so much for this post, it shed light to path I'm taking.

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