The first phone call on that morning, a week after I had surrendered it all up to HaShem, was from Zehava. Back from Israel from her 2 week trip, she was fully on board to help me find therapists for Dovi for the summer. All was not yet lost. She would still speak to all the other branches of TABAC and try to figure something out for me. I breathed a bit easier. So all was not lost after all.
The second phone call was even more exciting. One of the phone calls I had gotten from my ad from the Hamodia had been an unremarkable, non descript, slightly nasal sounding message with a local phone number. "My name is Rachel [garbled], I'm a SEIT, please call me at _____." I returned her call and got an answering machine and promptely forgot about it, assuming it was someone who thought it was a city job. To my surprise, almost a week later, Rachel called me back. She lived in Israel and was planning to be in the Catskills in the summer. She had a bilingual masters degree and was employed with TABAC - she had worked in the main headquarters until she had moved to Israel. She had a lot of experience with low functioning, non verbal kids like Dovi. One of her older sisters also worked at the main headquarters and her other sister was almost getting her masters and would start working after the summer. Her younger sister did Res Hab and was available in the summer.
It sounded like a dream, too good to be true.
But it was true. Good, and true.
Later that night I discovered something even more astonishing. A good friend of mine through the local Autism Support group had told me an incredible story a few weeks before. She has a 10 year old autistic boy, whose story is quite similar to Dovi's. He was even more verbal and 'normal' than Dovi had been at age 3; he was still gaining words as he was losing them. He attended the main TABAC branch until he was 7, after which she placed him first in school C and subsequently in school B because she couldn't afford School C and was unhappy with it. Her son was still not verbal, thankfully toilet trained (in his last year at TABAC), but is also aggressive and unpredictable; her younger children are terrified of him. Thankfully that is not a trait that Dovi shares with her son, but then again he is all of four years old and we don't know how he'll be at age 10, although I hope he won't be aggressive to other kids. Anyway, she claims that her son has an incredible Res Hab counselor, through whom he communicates by computer. I do not believe in facilitated communication and think it's a whole big load of baloney but she firmly believes that he types things for her on the computer, something he will do for no one else but this amazing counselor. This counselor? Rachel's next sister, the one who is finishing her Master's Degree and would possibly work with Dovi a little in the summer. "You can't imagine what an incredible family this is," my friend told me. "They love Josh. They will love Dovi. All of them, from the mother down to the youngest daughter; they are so devoted and have a special place in their hearts for children like Josh and Dovi. You are extremely lucky to have 'fallen in' with Rachel's family. You're in good hands."
To say I was speechless is putting it mildly. What were the odds??? Just a week before I was despairing of finding any therapists, a bungalow - anything for the summer. And now, by pure Divine Providence, I had stumbled on the most devoted family in the Catskills, super suited to my family's needs!
The mind... it boggles.
I called Zehava, who was beside herself with excitement. Rachel had all the credentials and experience and didnt have to be set up with TABAC's endless reams of paperwork. Now all we had to do was find a 2nd therapist, for the afternoons, OTs and Speech Therapists, and above all, a bungalow in the neighborhood where Rachel's family was staying, in Kiamesha Lake.
That proved to be a daunting task. Kiamesha lake is very small; one or two roads. The colony Rachel's family was staying in was not exactly my crowd; I can make friends anywhere, but my husband wouldn't have any company and neither would Chaim. We scoured the surrounding roads but came up empty. The one colony my husband would have loved, where he had a few good friends, had no bungalows available. The other colonies were mostly elderly families, and the prices weren't that good. Then we got a lead about a house on the road with a pathway leading directly into Rachel's colony - which for the sake of the next few entries I'll have to name, so let's call it Kiamesha Hills. I negotiated back and forth with the owner of the house, who wasn't sure she would rent it out unless she found two other families to rent the 2 adjoining units. I was a little nervous about staying in a place with no real company, a big forest bordering the back, and right along the road. So we continued calling, and scouring, and networking, but still not coming up with a bungalow.
After weeks of fruitless searching we resigned ourselves to the idea that the only other way to make this work was to go to Kiamesha Hills itself. I posted a question on Facebook asking if anyone knew anything about the place. One of my Facebook friends, had, in fact, been there for a few years and she contacted me. It turned out better than I could have expected. Kiamesha Hills is divided into four sections. Two of them housed a crowd that was foreign to us but two other sections, specifically the one called the "18" section because it had 18 bungalows, had a mixed crowd of people, several from my own neighborhood! She said I would feel right at home there, and that my husband would also find company. Now the question was - how to find out who had a bungalow for rent in Kiamesha Hills, and especially in the 18 section?
i called up Rachel's family and her sister gave me the phone number of the president of Kiamesha Hills. The president gave me the phone numbers of five different people with bungalows for rent there. Many of them were already rented, one of them wasnt sure if he was renting it, another one wanted too much money, and finally we hit on the only possible lead: A very rundown bungalow that was being rebuilt. My husband went upstate to see it and was disappointed; it was indeed in very shabby shape and didnt look like much of anything. I was getting discouraged; all I had was one SEIT, one res hab, no related services yet, no bungalow - and it was four weeks to the summer!
But HaShem never disappointed me before, and He wouldnt disappoint me now either.
Zehava continued working from her end, and before she long she had scored two more SEITs for me. One was a potential recruit who hoped to land a job at TABAC the following year and was really good; she was staying in Monticello about 10 minutes away and would be in the Catskills for the month of July. She didnt mind taking 2 afternoons a week, so that left 2 other afternoons. I wracked my brains to remember the name of the really sweet therapist who had seen Dovi 2 years prior in South Fallsburg but came up empty. Eventually Zehava came up with the name- and yes, she was willing to take the other 2 afternoons. We'd figure something out for August, which was only about 10 days anyway (summer sessions run from July 1- Aug 10).
Just about a week before the summer, I had a cousin's wedding. At the wedding, I discovered to my shock that Rachel's entire family was there!! They were relatives from the other side. Which was extremely surprising, as they come from an entire different community - yet they were somehow related. It was extremely exciting to meet Rachel, and her sister who would be Dovi's res hab. They were extremely refined, upstanding people who made a very favorable impession on me. I was beginning to look forward to the summer.
The next day, I ran into the darling Ellen, Dovi's incredible former lead therapist. She gave me a very exciting update: For the first time ever, Dovi was actually sharing a room with another child. Until that point, he had needed to be alone in a room to be productive, and not to disturb the other child with his frequent crying. He had come far enough developmentally and in maturity to be unfazed and unbothered by another child in his room. Ellen was that child's lead therapist and therefore got to spend some time in Dovi's presence, which excited her greatly. She missed him a lot and knew it was beyond her physical capacity to be his therapist the way she had in the past, and this way she got to observe him, hug him, and be near him. She was blown away by how much progress he made and told me about another cute incident; he had craved the cookies his roommate had brought from home, and when Ellen firmly told him it wasnt his, he ran around the room, desperately cleaning up every last toy, and came back begging for his 'reward'. She cracked up. That was a long, long way from the Dovi of six months before, or even three months before.
Indeed, as my facebook updates from that era attest, Dovi had definitely matured into a child who now enjoyed to play with toys and interact with people rather than just flinging random food around. Of course, he has his ups and downs and better and worse days; there are times when he reverts into super sensory stimming mode and just wants to turn the house into one giant mess, and there are other times when he will go happily from toy to toy, coming up for hugs and interaction. The Risperdal is definitely helping, as is simple mazel (luck) and the passage of time and therapy.
So back to last June. Time was closing in on me and we had to make a decision. Zehava arranged for Dovi's speech therapist from the city to come up twice a week to the country (she lives in Rockland County) to service many of her city clients, including Dovi. I purchased a bunch of new toys to be used during therapy. Rachel went to TABAC for a training session and to get to know Dovi. Alice carefully packed a bunch of toys and instructions into a box (with some hazelnut wafers that none of the therapists ended up eating but was a cute gesture).
It had been weeks since I advertised that I was looking for SEITs, when I got a surprising phone call... "My name is Sarah, I work at [School D] and saw your ad in the paper, I'm going to be at Kiamesha Hills this summer...." I nearly flipped! Kiamesha Hills! However, she was only coming up for August, so I filed away her information for use, perhaps for that last week or two.
Two days later came another unexpected phone call; another SEIT from School D, who was also going to Kiamesha Hills. That totally did me in. I was stunned. The die had been cast from Heaven. Kiamesha Hills, apparently, was crawling with therapists. It turned out that this particular segment of the frum community had a lot of girls going for degrees in special ed, and since was the principal bungalow colony for that community, it was full of girls and married women with degrees in Special ed. As an aside, I had never had much interaction with that community before, and had some negative impressions of them. In talking to all these wonderful families and girls I was abashed by how wrong my impression was. They were an amazing crew of funny, devoted, warmhearted people. I enjoyed my summer with them immensely and will forever remain enriched by my experience in meeting them.
I also managed to score another res hab girl for when Rachel's sister would be going to camp for the 2nd half of the summer. I was told by some of the girls I talked to that I would not have a problem finding additional girls and even therapists once I was there; the place was full of them.
The South Fallsburg therapist eventually backed out; she would not be going up to the Catskills after all. So now Chaya, the therapist from School D, was in!
It took a lot of juggling and figuring, but we had a sort of schedule set up. We would be going up on June 28 or 29; Rachel would do every morning from 10 - 1, and Dovi would have an hour break until Suri, the therapist from Monticello would show up and work with him until 5. The first two weeks she would do all four afternoons, until Chaya came up for a month (She was going to Camp Simcha Special for the first two weeks to work with physically handicapped girls). The next two weeks, Suri and Chaya would split the afternoons of the week. The final 2 weeks, Suri was going home, and Chaya would do all four afternoons. Rachel's sister Miri would do res hab til 6 pm. Dovi's city speech therapist would come twice a week, and in August I would have another speech therapist and an OT as well.
Sounds like a perfect set up, no?
Well, on paper. When it came to putting it into practice, we hit a few minor snags, but by and large it ran smoothly.
I spoke to a few people who knew the layout of Kiamesha Hills and I was assured that the owner of my new bungalow was a perfectionist and he would surely not give me a shoddy bungalow. My husband went out again to see it, 2 days before D-Day, and was pleased with how nicely it had turned out.
I had a funny / awkward incident, when several days before the summer season I called up the only person I knew from my neighborhood who would be going to the same colony to ask her about obtaining a cleaning lady to clean the bungalow before we went up. She responded extremely coldly and was very off-putting. I resolved to steer clear of her all summer and was pretty taken aback and a little hurt. It turned out to be one big misunderstanding, which I'll talk about in the next entry. I also tried reaching the family who would be residing in the next-door bungalow but could simply not get through. I discovered that she was a high-powered shadchan (matchmaker) whose phone was busy all hours of the day and she never returned phone calls.
The day before D-Day Dovi celebrated his fourth birthday. I sent him to TABAC with a birthday hat and they went out and bought him an ice cream cake to celebrate. Happy Birthday darling!
D-Day dawned. Originally, we were going to leave on Thursday, but I simply couldn't get my act together to be ready to leave by the afternoon. So we rather finished all the packing on Thursday night, put all the boxes into a rented van, which the driver would drop off the next morning, and bright and early on Friday, at 8:30 a.m., we piled into my husband's (company) compact car for the 2 1/2 hour drive to Kiamesha Lake.
I knew I would come home with new, interesting experiences; my summer is always enhanced by my country experience. I was more curious, and worried, how I would survive six weeks of very little respite from Dovi - yes, he would be off my 'hands' for the majority of the day, but I would still be fully in charge - no husband (aside from weekends), no home health aide, no weekend respite, and harder still would be reining Chaim in - he tends to really take advantage of me when my husband isn't around.
Would the summer live up to our dreams? Would it be a fantastic experience or a draining one? Would I make new friends? Would Chaim? Would my husband? Would Dovi love it?
We would find out in due course. And so will you.
To be continued