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Wednesday, November 7, 2012


Enough with the philosophical musings. Time to pick up the thread of the narrative. I left you all hanging, waiting for the meeting with the E.I. Officer.

Once Naomi decided that Dovi was a good fit for the ABA program, the next question became: How soon would they be able to start, once I got my IFSP (individualized Family Service Plan). It turned out to be way more complicated than I had expected.

Because it was so late in the school year, Naomi was extremely occupied with end-of-the-year paperwork and meetings and setting up the kids for the summer. She didnt have any therapists available for me until the start of summer sessions, which was July 1st. When she heard we were going up to the Catskills for the summer, she was dismayed. We would be away from June 16 - August 15; summer sessions were from July 2 until August 10. This meant that Dovi would only begin his ABA program in mid-September. This was way too long to wait!

She couldn't understand why I was contemplating going away for the summer when so much time was at stake. But I had already given a deposit on our bungalow, and I wasn't going to turn everyone's lives upside down more than it already was. This wasn't fair to Chaim, to my husband, to myself, and even to Dovi. Every year I looked forward all year to spending the summer upstate, away from the hot, concrete city. The kids thrived in nature, played with sand, and spent time in the swimming pool. Staying in the city was too depressing to consider. But here I was being made to feel guilty by the very people who were supposed to help me!

After a lot of back-and-forth phone calls, tears and heartache, I was finally told by Naomi that she would work on finding an ABA therapist for Dovi who was also going upstate for the summer. We had done that in the past with Chaim and I hoped we would be able to do it with Dovi as well.

The second blow came in the form of a hesitant phone call from Naomi. She had spoken to her supervisor at the main headquarters of the agency supplying the therapists to The ABA Center and they had told her that in order to receive ABA services from them, I would have to switch the entire service coordination over to their agency.

I was speechless. This was unacceptable! I had such a good rapport with  Annie, my incredible service coordinator over at the Early Education Center. I did not relish giving over the job to some impersonal face at Headquarters who did not know me and had not gone through the process together with me. Plus, a major factor in choosing EEC as my service coordination agency was its convenience; it was the only EI agency in my neighborhood, and that meant no need to travel by bus, with my child, for every meeting with EI. But bigger than that was my dislike for the agency (known hencefore as Headquarters) itself. After my previous experience with Chaim, it felt to me that they seemed to care only about their bottom line, get as many clients as possible, and expand to as many locations as possible. They had ABA centers and Head Starts everywhere, and a fitness center and I'm surprised they never opened a mega supermarket a la Pomegranate. I was afraid that they would never let me go if I decided I wanted to work with another agency midway through. I would miss the motherly compassion I was getting from Annie, Service Coordinator Extraordinaire. The entire thing just didn't sit right with me. Sending out therapists for my child should not have to be contingent on giving them over the service coordination! EEC could handle the OT and Speech for me and be in touch with Naomi regarding the Special Instruction. But no! They wanted the entire pie for themselves.

Naomi explained to me that it would be a hassle to keep getting in touch with EEC every time there was a problem or change with the ABA team. If the service coordination was transferred to Headquarters, it would all be one seamless team and not a hodgepodge of different agencies. However, she gave me two options: I could either leave the service coordination with EEC and she would send the therapists, but she wouldn't do any supervising or give input; they would be on their own basically. If I transferred service coordination to them, she would be in charge of the educational part and be able to do supervision and training.
quite upset. I felt backed into a corner. I had no choice. I really wanted Dovi to get the best care, and if this was the only way to do it, so be it. Since I wanted Dovi to continue at TABAC after he turned 3 - hopefully only part time - I knew I had to work along with Naomi if I wanted that to happen. I was contacted by my new service coordinator, a wonderful woman I'll refer to as Becca Linsker. It turned not to be so bad. Becca was the service coordinator for all the ABA cases, and she was extremely knowledgeable - she had way more knowledge, resources, and ideas for me than EEC could ever have. She was a lot harder to reach than Annie had been, and I felt a little intimidated because of her high position at Headquarters, but the transition was a pleasant experience. She is very much my speed; she has a wicked sense of humor and we exchanged hilarious emails. If I had felt more mothered and cared for at EEC, I felt more understood and directed at Headquarters. Becca knew the ins and outs of the EI system like the back of her hand and was able to  guide me with the utmost professionalism and devotion. She told me to catch my breath and not jump into everything at once! "First comes the therapy. Then the fish oils. Later, the diets. Don't do it all at once. You'll burn out before you even begin." Wiser words have never been spoken.

Ironically, very few of Naomi's predictions came to pass, and this was my first introduction into her unfortunate penchant of promising the moon but not delivering. She was the one who was basically unreachable; she did not respond to my voicemails or emails for days at a time, while my contact at EEC was basically always available. Becca was usually easy to reach, but there were times, especially at the beginning, where I was extremely frustrated at the lack of communication and transparency.

Also, Naomi barely even offered supervision when it came down to it. At first she came to observe Dovi's home ABA sessions once a month or so, but then she went on maternity leave and was virtually incommunicado for months. Dovi's therapists were terribly frustrated at this abandonment and expressed their frustration to me, which wasn't healthy for me.  I butted heads a lot with Naomi that entire first year - I'll write about that in a future entry or five.

The biggest irony in all of this, is that Naomi Whyne actually left my local branch of TABAC last September to head a different branch. So all my 'fear and loyalty' was a waste. I would have probably made many different decisions had I known I didn't have to go through with everything she wanted because I didn't have to please her to get Dovi accepted at the Center after he aged out of Early Intervention. But all of that is behind me. For whatever Divine reason, I had to go through the frustrating experience of dealing with Headquarters and giving in to their every whim. At the time, though, it was maddening.

Looking back now, I am aware that a lot of my reactions were melodramatic and over the top. However, I was still stuck in a place of mega anxiety and the inability to handle any sort of waiting. I needed answers NOW, and I needed everyone to listen to me vent all the time. I kept going back and forth with many different people, obsessively going over every possible scenario, until they were sick of me. I don't fault Becca or Naomi for not returning my calls right away; they are both very busy people and I wasn't quite at the top of the totem pole at the moment.  It was the end of the school year and they had a lot on their plates. But I wished I were paid a tad more attention; I was going through a terrible time, trying to come to terms with the reality of this major, life-altering situation and was grabbing desperately onto any person who would give me a listening ear. Through lots of therapy, self-introspection, and an amazing parenting course, I have since learned to relinquish control, to stop being so hyper-focused on every petty detail of my life and to "Let Go and Let G-d", if you will. But it took years of hard work to get there. At the beginning of my journey with Dovi's autism, I was hyper-anxious and irritable and had no patience to wait for answers. I needed them now, or else.

Finally, the day of the IFSP meeting dawned. My mother took Dovi for a walk, as Annie felt he would be a distraction, and maybe even a detriment to the outcome of the meeting. (If the EIOD thought he was higher functioning than the reports indicated, we would have a hard time getting services.)

It was a rather interesting meeting. Present were Annie, EEC service coordinator, Julie the Eval Rep from EEC, Becca from Headquarters, and the officer from EI - a gregarious Russian woman I'll refer to as Lorraine.  Becca and Annie both murmured to me that Lorraine was usually generous with awarding hours, especially for autism diagnoses, but she was temperamental and I had to rub her the right way.

Here is an excerpt from my now-defunct LiveJournal blog on the day of the IFSP meeting:

The IEP meeting today went pretty well. It was long, heavy at times, and quite emotional. The end result was that Dovi will get 15 hours of Special Instruction/ABA, which will be 'at home' until September, after which he'll get three sessions a week at home and two at the center*.  He's also getting speech 5X a week, 30 minutes each. It'll probably be split between 2 therapists: 1 therapist will be ABA trained and 1 might be a regular therapist. Also, we get OT twice a week for half an hour, which hopefully Rosalie [Chaim's previous OT] can do. I managed to score something very important: a Social Worker for myself twice a month for an hour!!! No need to go to therapy, a SCW will call me once every two weeks and I can vent to her!** I found Becca Linsker, the new Service Coordinator from Headquarters, to be very pleasant. It was sad to say goodbye to Annie from EEC though.
Some of the more positive things Lorraine said to me was that 1) There are many options available for PDD: There's ABA, Floortime, Regular SI, etc., and if at any time I feel it isnt working, I can speak to my Service Coordinator to modify our service plan. 2) She feels very strongly that kids can outgrow PDD and we are lucky to have caught it so young. 3) No one in the room was very excited about the gluten-free casien-free diet and said it was something to try only if ABA doesnt seem to show results.
WHat did turn me off was that Lorraine was not happy that I'm still nursing Dovi, even though it's mostly recreational nursing. She urged me to wean him, saying that the sensory input he gets from it is what we're trying to cut out. thankfully Julie Feiner the Eval Rep interjected that the therapists will work with me on that.
Lorraine was impressed by my wealth of knowledge. She said I saved her about an hour of explanations. I knew a lot of stuff. I've been reading and researching!
So, we have our mandate, and now Rosalie can begin as soon as tomorrow. Naomi Whyne is still working on getting ABA therapy for me for June, and now both of them have to get to work at finding me therapists for the Catskills for July & August.
On the way home I stopped in to TABAC to drop off my application paperwork. Naomi tried to work a little ABA on Dovi and he was really engaged and looking at her!
Whew. What a day, but what an outcome, Thank G-d. hopefully we can start our journey at getting Dovi's potential back....
So IFSP in hand, I naively assumed that the next morning Dovi would start a full roster of therapies. I braced myself to give up my schedule, my life, my everything.


For a full week I was given the runaround by both Becca and Naomi and I thought I would lose my mind. I wanted INSTANT results! Well, it doesnt work that way. Therapists dont suddenly have magical available slots in June. In the end Naomi was unable to find anyone available to see Dovi in June, and neither were any OTs available, including Rosalie. But they managed to put together a fabulous team for the 2 summer months in the Catskills, and one of them, a speech therapist, would still start with us before the summer.

I weaned Dovi in 2 nights; it wasn't as hard as I had thought. After he had slept through for 2 nights in a row - on his own, I decided to grab the bull by the horns. The next 2 nights when he woke for his usual all-night-open bar, I snuggled with him with a warm bottle of chocolate milk and then put him back to bed. On the third night, I gave him the bottle in bed. On the fourth night, he didn't even wake. It was as simple as that. I was stunned. I was also sad, as nursing had meant so much to me -- I had been unable to do it with Chaim, and it was wonderful that Dovi lasted 2 years. I wondered sadly in the back of my mind, if I would ever get to do it again... Who knows.

And so we set off for the Catskills, and I waited anxiously for July 2nd to roll around so we could begin ABA. I was nervous; I knew ABA was demanding and brutal and I was dreading it.

I had no idea just how gut-wrenching it is for a mother to witness it. Torture is an understatement.

But that's all for my next entry.


* Becca and Lorraine were arguing back and forth whether TABAC was a registered Early Intervention Center. Becca insisted it was, Lorraine firmly stood her ground that it wasn't. You'll all find out later who was correct!....

** The social worker ended up being absolutely useless and I floundered terribly until I finally began seeing an incredible therapist, to whom I owe my life.

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1 comment:

  1. I'm still amazed at how much you got. My kid who didn't even get "PDD" but "classic autism" got a zillion hours less. I wonder where we'd be today if we had lived in your community at diagnosis time. Well I take what I'm given and work with it. Meanwhile my husband rails almost every night about how we need to move to your state. For many other reasons we won't, but it's tempting!


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