To that end I have to tell you an absolutely stunning incident that occurred right around then, a month or two after The Song That Changed Me.
Let me give you a mini crash course on how the Special Ed system works in New York. When a child ages out of Early Intervention the next step is to get evaluations and submit them to the Committee for Preschool Special Education, or CPSE. New York is divided into a bunch of different school districts, and each district has one or two district administrators who are the ones to decide whether the child in question is eligible for the services the parent is requesting.
Faithful readers of this blog may remember that I had some struggles with Chaim too, so I was familiar with the process as well as the administrators. Chaim's path had been different, however; he had been discharged from E.I. at his 2nd birthday, so to get services for Chaim I had to get a letter from his school requesting evaluations. The evaluations were so poor that it wasn't too hard for him to get approved for services. At that time, our local community organization had a unique setup with the district administrators; they actually came down to our neighborhood once every two weeks to hold the IEP meetings in the community organization's offices so that the parents didn't have to shlep to downtown Brooklyn and leave their babies behind with babysitters for these meetings, which were sometimes brief and easy; the city handed out services quite freely in those days.
My school district has two administrators for CPSE. I'll refer to them as Marlene and Peter. When I was getting approval for Chaim, I met with Marlene twice - first to hand in the letters requesting the eval, and later to meet with her for the fast-track IEP meeting and get approval. A representative from EvalCenter, the agency who does evaluations at Chaim's school, was there as well, but she wasn't very effective; she was just listening and taking notes. Marlene awarded Chaim VERY generously: 15X60 SEIT, 3X30ST and 2X45OT. Marlene is a walking doll, a human beating heart - an absolute sweetheart. Her counterpart, Peter, on the other hand, is much more strict and less emotional. He tries to keep educational costs down low and isn't so magnanimous with the hours he awards.
When Dovi was being evaluated for CPSE, I had a choice of two agency: EvalCenter, or TABAC Headquarters. The pros and cons were as follows: If I went with EvalCenter, I had Marlene as the administrator and her wide hand; but I would be dealing with a company who didnt know Dovi at all and I would have to go through the whole explanatory procedure all over again. I also wouldn't have Becca at the meeting guiding me and advocating for me, but a total stranger who really didn't know Dovi or my family. On the other hand, if I went with TABAC Headquarters, Becca would be directing the evaluations from behind the scenes and would be on hand at the IEP meeting - but we would have Peter at the meeting instead of Marlene.
It was a very difficult decision; but ultimately I went with Headquarters. The familiarity of the staff and the comfort of Becca weighed over the choice of administrators. The evaluation process went smoothly. Meantime, Rose began working behind the scenes to get Marlene to take the case instead of Peter, but there wasn't much she could do; she couldn't just snatch our case out of Peter's file and take it for herself. She promised, however, that she could do whatever she could so that we would be awarded generously. I was apprehensive and hoped that Peter would be in a good mood at the IEP meeting and wouldn't be stingy with the awarded mandate.
Meanwhile, unbeknownst to me, wheels were turning up in Heaven, putting in place the scenes for a fascinating story that was about to play out... G-d's guiding Hand, the Presence that never left me despite the extremely difficult daily circumstances I was facing.
The principal actor in this quiet puppet show, out of all people, was my older son, Chaim.
When Chaim had aged out of CPSE and transitioned into CSE, the elementary-school special education division, he wasn't awarded very much. SEIT is not available for children over 5 - which in itself makes things so difficult for children who still need the help in elementary school but go to private schools for religious reasons. He hadn't been getting OT for 1 1/2 years because Headquarters was unable to provide an OT to come down to Chaim's school and they had no after-school slots. So there was no paperwork documenting a need for OT, and therefore all he got was 2 half hours a week of speech therapy.
Partway through the school year his Rebbe called me up and raised some of Chaim's issues. He apparently had trouble concentrating; he daydreamed a lot and he lost his place in the alef-bais book all the time. He also had a hard time learning kriah (Hebrew reading) and he was concerned how we could help Chaim.
My heart sank.
I had so hoped Chaim had passed over the hump of his 'issues'; he had made such huge strides the previous year in Kindergarten and while he still had some social issues, his behavior had improved dramatically. I couldn't believe he was sitting still for the five hours of schooltime without a problem, wasn't acting out and did basically know his stuff. So what was this new thing?
I did the right thing; I called up the main office of the school and had them request a new evaluation for Chaim. I was unfamiliar with how the CSE system works; it wasn't as clear-cut as with CPSE. EvalCenter sent a psychologist to meet with Chaim. I didn't have the time or energy to take him to EvalCenter after school but asked them to send the psychologist down to school instead. That was a huge mistake on my part; had I been present at the interview I would have been able to explain and translate things to the evaluator. Instead, Chaim had a disaster of an evaluation. The psychologist totally didn't understand Chaim and vice versa, and therefore a very skewed picture came out.
The funny thing is that some of the things in the eval made me chuckle; they were so classic Chaim, they were the innocent, smart-alecky things he sometimes said which made me giggle behind my hand. Other things were complete distortions of what he really said, since evaluator was not from the community and his dialect was difficult for Chaim to process.
I had my IEP meeting over the phone with the CSE department. They didn't think there was anything they could do for Chaim. They felt that he appeared to have ADHD - he in fact has some symptoms but not all - and thought he would be better off evaluated and treated medically. I was not prepared to take that route and told them that I felt he would do great with OT; Occupational Therapy was definitely instrumental in increasing attention span, decreasing sensory issues, and would loosen his tight shoulder and arm muscles which were making it difficult for him to hold a pen. The CSE staff told me that I had to hand in a request for an OT eval and I would get instructions by mail.
I indeed received a letter in the mail, scheduling an OT eval... at the Board of Ed building in Downtown Brooklyn, on a specific day at 4 p.m. Arrgghhhh.
At the CSE level, apparently, evaluations for related services are conducted by their own evaluators, in their own building. It was a huge hassle - but I had to do it if I wanted Chaim to get the help he needed.
All of this was happening during a crazy, hectic period. I recently found this Facebook status update from that time:
Monday, Feb 28: ENT appt with Dovi @10:45 a.m. OT eval appt. with Chaim @4pm in downtown brooklyn. Tuesday, March 1: Appt with dr for that coveted scrip. Wed Mar 16: eye doc appt @10:30 a.m. Thurs Mar 17: Taanis Esther. Sunday Mar 20: Purim. Monday Mar 21: Shushan Purim. Tuesday Mar 22: Meeting with CPSE re Dovi's therapy post June, also downtown brooklyn. Busy enuff?
In the morning I indeed went with Dovi to the ENT, who finally confirmed that Dovi's hearing was fine. At 3:30 PM I dropped him off at my sister-in-law's house and ran to pick up Chaim from school and rushed to catch a city bus with him, in the rain. We got there a little late and I was feeling anxious. We finally found the right floor, handed in our papers, sat down, and waited.
At the reception desk sat a sweet brunette, who looked slightly familiar. As I passed her by, she suddenly said, "I remember you! And Chaim too."
I stared at her and tried to jog my memory.
"You don't remember me? I'm Marlene."
OH MY GOSH.
What on earth were the chances of her sitting at the reception desk at 4:30 pm on a random Monday?
I was speechless.
"Marlene! Of course - I remember you too! I can't believe you remember us - you have quite a memory! Look at Chaim! Look at how mature and improved he is, thanks to your kind and generous mandate! Remember? You gave us - " Marlene mouthed along with me - "Fifteen hours of SEIT - " she nodded and beamed at Chaim. "It's incredible what a long way he's come, thanks to you Marlene."
My voice broke and I practically started crying. "Marlene... I have another child, he has PDD-NOS and his IEP meeting is coming up. Unfortunately his case is with Peter, and I know he won't give us as many hours as we need... Please, please, please, is there anything you can do for us? You've been so good to us in the past... Chaim wouldn't be what he is today without your generous mandate." I had tears on my cheeks. Marlene cleared her throat. She looked close to crying herself. She promised me she would do whatever she could. The Occupational Therapist had arrived in the meantime and she watched the scene and seemed overcome with emotion too. It was surreal.
I practically danced into the evaluation room. I could not believe my stroke of good luck. It wasn't merely luck, it wasn't merely coincidence. This was absolutely divinely orchestrated. I had to drag my weary self down to the Department of Education so that I would meet Marlene in person and make my plea to her. Rose was already working on our case behind the scenes, but it wasn't quite the same as meeting the mom in person and seeing how fiercely she was advocating for her child.
The evaluation was fascinating. Unlike the local chap-lap evaluators, she was extremely thorough; it took over an hour. She wasn't as concerned with Chaim's attention span and concentration as she was with his stiff arm and shoulder muscles and his clumsiness. She told me he definitely qualified for OT. Sure enough, we started OT in April which complicated my days even more; I found myself rushing out at 5:45 pm with both kids twice a week after a long day of Dovi's therapy schedule. My husband eventually took over the job of taking Chaim to OT.
Before I left the building I once again reminded Marlene of our plight and she promised once again to do whatever she could. I just couldn't believe this was really happening.
Three weeks later I was back in the same Board of Education building. Act 2 of this incredible story was about to begin. I arrived there a nervous wreck; I had called a taxi instead of shlepping by train so that I would be on time, and the car had arrived late, having gone to the wrong address. I was very nervous about being late, but Peter was in no hurry either. I discreetly looked around for Marlene but she wasn't there. I was a little worried, but I hoped she hadn't forgotten us and had woven her magic quietly.
The meeting went a little stiffly. Present were Becca, Peter, a parent advocate, I, and the director of TABAC's main ABA center, Karen. We made our case and discussed Dovi and waited for Peter's verdict. It wasn't too shabby, but it wasn't what we wanted. He proposed 20 hours a week of SEIT (up from the 15 we were getting then), speech therapy 3 times a week and occupational therapy 3 times a week. This was unacceptable. We were getting ST 5X and OT 4X through EI - we were NOT going to allow a downgrade!
We argued. We explained. Karen stood her ground. "A child as impaired as Dovi needs far more than this." I told Peter about Dovi's intense sensory issues and that he needed OT every single day. I insisted that he just had to get speech and OT daily; 20 hours of SEIT a week sounded good to me.
Karen was unconvinced. She insisted on 25 hours. We had reached a stalemate. I didn't want to create a 'scene'; Karen was stubborn for good reason, but I just wanted to get my IEP and get out of there. I was willing to compromise if we got daily OT and Speech and stayed with 20 hours of SEIT. That means that Dovi would have 4 hours of Special Ed every day, plus an hour of related services (3 hours of SEIT and no related services on Friday), which meant a 5 hour school day. A 10 am - 3 pm school day was just perfect for me and exactly on par for a 3 year old. I was ready to sign the dotted line. Peter was happy with this compromise too, and pen and paper were prepared.
Then the door opened.
Marlene poked her head in.
"Peter, can I talk to you for a minute?" Peter stood up and followed Marlene. Marlene winked at me.
My heart beat like a sledgehammer. My palms were clammy. I didn't dare hope.
We stared at each other in disbelief. At the very last minute, Marlene was coming to our rescue. Had I arrived to the meeting on time, we would have wrapped up by now. Because my taxicab had been late, our meeting had run over time and Marlene had just walked into the building.
After conferring for a few minutes, Peter and Marlene walked back in.
"My colleague and I were discussing the case outside," Peter said. "We have decided, based on the severity of Dovi's disability, that he qualifies for 25 hours of SEIT, OT 4 times a week and Speech Therapy 5 times a week."
That was when the floodgates opened. I could barely speak. I mouthed "Thank you" to Marlene and expressed my gratitude to Peter. I had to be careful and courteous and not make it seem as if Marlene had done all the work, but that it was Peter's equal decision to award us such a generous mandate.
We signed the papers, adjourned the meeting, and I ran outside to hug Marlene. She was beaming. I was crying.
I arrived home from that meeting high to the sky. The most gifted scriptwriter couldn't have written a better story. I had to go through the whole evaluation situation with Chaim, so that Dovi would get his due IEP. The story was so incredible it left me speechless.
That was just one of the many times I felt G-d's Guiding Hand and His Loving Presence in my Dovi situation. And opening myself up to His Blessings and His Guidance was the only way I would be able to survive this difficult, challenging situation. Trust me.... We can't do this alone, even if we think we can. We can't.