I started writing this post in late August, a day after I visited Dovi (that's like 3 visits ago, lol. I'm still going every 3 weeks, religiously!) and simply didn't get around to finish it, because we came home from summer vacation a few days later and fell headfirst into the month of Tishrei. Then I got very busy with my very consuming ebay hobby. But the positive feedback from about a dozen of you spurred me on to get this piece finished, even if it'll be a month until the next one...
So here's the part I wrote back in August, and then I'll continue.
So, let's pick up the narrative from the previous entry, where I described in brief, the evolution in New York from oversized impersonal / abusive state facilities to small, personalized group homes.
As I started saying, when I began attending the local support groups, I was flummoxed that the main topic of discussion was about placement opportunities -- or rather, the lack thereof.
It seemed that despite the plethora of MSC agencies running residential facilities, there were simply no beds to be found. Apparently, the OPWDD had put a freeze on building new homes, preferring that young children be kept at home at all cost. Even if the cost was the sanity and well-being of the child's family, and often the wellbeing and even safety of the child himself. The bigwigs at the OPWDD just didn't seem to comprehend the extent of the effect of the severely behaviorally challenged population. And waiting around for an available bed was about as good as doing nothing.
Although I knew it didn't pertain to me yet, I kept my eyes and ears open for whiffs of the knowledge of new Homes being built, so I could apprise my friends of the news. I would call them up and inform them of what I heard. More often than not, it turned out that the agency was just canvassing for lists of children who needed a placement so that they could present the state with a plan. Then the waiting around for approval began, and it could take years.
Some of the kids in our support group really, really needed to be placed. They were older teens whose presence was really wreaking havoc on the rest of the family. Some of the ladies in the group or their husbands had influence in Albany and they were still unable to push through for new facilities. (Eventually one girl miraculously got placed, once her younger sibling was born with similar disabilities and a facility took pity on her. There was one vacancy and 8 families fighting over the bed; HaShem moved the puzzle pieces around so that she got the bed!)
Among the severely autistic kids in my group, Josh and Zevi are the most similar to Dovi. They are non verbal and hyperactive with little danger awareness. As all children, they differ in their personalities and abilities and their level of smarts, but when it comes to describing their behaviors and constant need for 1:1 supervision, they fall into the same category. At the time of this narrative, Dovi was 4 years old, Josh was 10, and Zevi was 8. Yolanda had no interest whatsoever in placement for Josh; although caring for him was very time consuming, she had a system in place for him and was managing to survive. He was in a good school; she had a home health aide for the morning routine, com-hab/respite families for after school, and when he came home in the evenings she kept him contained in his room until her other children were in bed. It wasn't ideal, but she wasn't quite falling apart. Josh was her oldest child and she had poured her heart and soul into helping him. He was toilet trained and communicating somewhat with a device. Up to that prior summer when he was kicked out of Camp A, he'd had summer camp too. Sylvia was trying to get Zevi into long-term placement. Her situation differed greatly from Yolanda's; Zevi is the third child of a large, growing family, and it was absolutely impossible to care for him and keep him safe at the same time as her other children. Although Sylvia and I were really close, I often judged her for that decision and constantly debated her, trying to make her realize that she could handle Zevi better than she thought. She refused to take help into the house, instead sending Zevi out as often as humanly possible. After months of hard work and research, she had a perfect setup of resources for him. He attended School E and Camp A, which are affiliated. School E has an afterschool and legal holiday program, and is affiliated with a Sunday program (the same Dovi went to at the time). His counselor at the Sunday program also did com-hab for him every afternoon; he came off the bus directly to her house, where she played with him, fed him supper, bathed him, put him in pajamas, and brought him home ready for bed. For Shabbos and YomTov, Sylvia alternated between four options: The Respite House, Mrs. G., the com-hab girl's house, and her parents -- she had a few teenage sisters who loved taking care of Zevi in their large surburban house. So despite dealing with Dovi-level constant action and messes, and back-to-back pregnancies and babies, her house functioned without missing a beat, like any other family.
Then, the proverbial 'crud' hit the fan, and things started going south really quickly for both Yolanda and Sylvia. Josh was physically aggressive towards his younger siblings and they were afraid of him. It came to the point that his little sister started developing tics from anxiety of being around Josh, and she told her teacher in school that she was afraid of her brother. As for Zevi, Sylvia's support network started fraying suddenly in one fell swoop. His devoted com-hab girl got engaged and married at a very young age, which took Sylvia by surprise. Shortly afterward, one of Sylvia's sisters got engaged and married. She was suddenly short two Shabbos resources, and had to scramble to find new com-hab options.
Continuing on 10/21: Whoa, I can't believe I wrote all that. I don't even know myself what I wrote! Why am I telling other people's stories? I myself am confused where my narrative is heading. THere's gotta be a point somewhere, no? Okay, let me try to pick it up somehow.)
When Yolanda came to the realization that Josh needed to be placed because of the psychological damage his presence was causing the younger children, she was at a loss. She did a boatload of research; thanks to her, I later had the phone numbers and contact info of all the different agencies who run group homes. She hit a brick wall everywhere she turned, until she got a sliver of a glimmer of hope; one agency was seriously working towards building a home for a handful of boys with autism. Yolanda left no stone unturned to secure a place for Josh. A simple phone call to an influential woman in a prominent Jewish organization did the trick, and Josh was slated to enter the new residence. A second slot went to another boy with a similar behavior profile whose mother I knew well - she attended our support group. Zevi's service coordinator also got him a coveted slot in that residence. Whenever it would open. It could take months, it could take years. They had no idea when it would be.
That summer, I advertised that I was looking for com hab workers after school hours. I received many phone calls, which resulted in my lifesavers for that year, Cerie and Toby. Among the people I rejected was a man I will call William. I was leery at the idea of a man working with Dovi - it didn't seem normal that a normal adult male was looking to be a com hab worker for a little boy, it was usually something high school and post-high school girls did on the side. But when I called him I was surprised to find out that I knew him rather well - he's a cousin of mine, and he had actually been my oldest son Chaim's bus driver 2 years earlier! For some mysterious reason he had been let go of his job, and he was now running a playgroup for little boys ages 2-3. Now I understood why this job interested him; he wasn't quite making ends meet to feed his large family, and dealing with little boys, even if they had disabilities, was up his alley. He had his own little school bus with which to pick up and drop off Dovi, and a playgroup full of toys that Dovi could potentially play with. However, I didn't think he could handle Dovi at all. He had no experience with the autistic population, and I didn't think it would be a good fit. At that point Dovi wasn't as interactive as he is today and was spending a lot of his time just making messes and mischief and mayhem; I couldn't imagine how William, a 40 year old man who had never done this before, would have the patience to chase Dovi around his neat, cleaned-up playgroup for 2 hours. I regretfully declined the offer.
Imagine my surprise several months later when I found out who Sylvia's new com hab worker was in place of her newly married com-hab girl - William! He was managing Zevi just fine; playing with him at the playgroup, occupying him, giving him supper, and then bringing him back home to her house where - this made me raise my eyebrows - he bathed Zevi and put him in pj's, and then he left. (Why she couldnt do it herself or get an aide for that, is her business, I guess).
I expressed my surprise to Sylvia about William doing the job, but she told me she was really happy with him and it was working out great. We had a long discussion about the endless search for com hab workers and we were commiserating about how finding good help for kids like ours was a lifelong struggle, and as they get older, heavier, stronger and more stubborn, it's nigh impossible to find girls interested in this job, and finding normal men who are capable of doing this isn't easy either. It was a sobering realization. This would go on to be my own reality for the next few years as well. It is draining.
To replace her sister who no longer took Zevi for Shabbos, Sylvia advertised that she was looking for families to have her child for Shabbos. The ad was answered by a family down the block! They would take Zevi from Shabbos morning until bedtime. Now Sylvia had a new rotation in place: William for after school, Mrs. G., The Respite House, and the neighbors taking alternate Shabbosos; and of course, the Sunday and legal holiday program. Just coordinating and juggling all that took a huge toll on her.
As the winter dragged on and there seemed to be no hint of the home she was waiting for coming to fruition, Sylvia asked me one day, "Did you ever hear of a place called 'The Academy of The Future'"? (Name has been changed, obviously. I will refer to it as TATF from here on, to make things easier.) Nope, I had never heard of it. And when Sylvia began to explain, a whole new - and scary -world opened up to me.
Apparently, group homes aren't the only way to go. There is something I had never heard of, called Residential Schools. Funded both by the OPWDD and NYC Board of Ed, they're another option to consider. The part that's daunting, obviously, is that these places are not run by Jewish staff, do not - for the most part - offer kosher food, and tend to be a far distance away.
Sylvia had visited TATF in the summer, and was blown away. The biggest attractive quality of TATF is its location - it's in the scenic Catskill Mountains, where many families like mine spend their summers. That meant it would be easy to visit in the summer, not too difficult to access in the winter, with Coach USA buses - and best of all, her son would have a 'camp experience' all year round. Kids like Zevi and Dovi don't do well living in a cramped city apartment and tend to do very well in the summer when they're in camp. That's one of the reasons everyone wants to get their kids into one of the Hamaspik facilities - they're large, airy, clean, and upstate. Living in a group home in Brooklyn is nice, but living upstate - even better. Sylvia was impressed with the large, clean living facilities and the acres and acres of room to explore outdoors. They had an excellent school as well, with an indoor pool, excellent therapy, and a new autism program (they were geared towards physically challenged children until recently). Another attraction of TATF is its sizeable Jewish student population; there are quite a few residential students from frum, kosher-keeping homes, and after a lot of negotiation and discussion they allowed kosher-keeping students to store their own food in the kitchens, which is a big draw. Sylvia was highly interested in getting Zevi into TATF, but even that was an uphill battle. She described the process to me, and it made my head hurt.
Her first step was to call an IEP meeting and explain to the school board representative that her son wasn't doing well anymore at his current school and needed a more round-the-clock program so he would have carryover in his residential location for the skills he learned during the day, and with her large family and busy life she couldn't provide that. Once that went through, the Board of Ed had to make their decision, and if her son was approved, his information would be sent out to different residential schools in New York, some which were better than others. She had to hope and pray that TATF would have an opening for her son for the next school year; otherwise she'd be forced to look into other, less desirable schools.
It made me sick to my stomach to even think of such an option. 2 hours away? in a non-Jewish environment? Why couldn't Sylvia just wait for the new home in Brooklyn to be built? But it was clear from all our phone calls that taking care of Zevi was extremely draining , and it wasn't even good for him to be bounced around from respite house to respite family to com hab worker to sunday program and so forth; he needed one solid place to call home that could help him. Not only that - the school at TATF was excellent, and would be able teach Zevi to skills that his current school couldn't provide.
Sylvia had an uphill battle getting Zevi approved for residential schooling. School E wasn't really cooperating with her request; they felt he was doing pretty well in their program, and didn't really understand why Sylvia wanted to go this route. Her first request fell through. She called for another IEP meeting and presented the rep with a letter from Zevi's summer camp informing her that unless his aggression would decrease, he might not be able to return that summer. This clinched it, and the BOE rep promised to get the balls rolling.
I shuddered at the thought that one day down the line I would possibly find myself in the same shoes, having to make this impossibly gut-wrenching decision for my own child. I couldn't bear to even think about it.
Although it would be a couple of years until I would actually find myself in that position, things were starting to build up to a crescendo, culminating in the day my stomach dropped out of me and the floodgates opened - a precursor to what was awaiting me down the line. Stay tuned for the gut-wrenching story of June 13, 2013. Have some tissues ready.
Til then, I leave you with this delicious picture, a treat for reading all the way to the end.