I hope you're all having a wonderful Pesach.
Things worked out really nicely around here, Boruch HaShem. I had been extremely worried how I would manage to bring in Pesach, and how Dovi would behave during the seder. In the end, he wasnt feeling well for about a week, so he was well behaved enough for me to do all my Pesach prep and he slept through the sedarim. He's on the mend now, Boruch HaShem. I had a nervewracking few days when he was supposed to have been well already but was still very drowsy and sleeping for way too many hours. I finally figured out that the increase in his meds, which coincided with his week-long virus, was not good for him and with his doctor's instructions we scaled back until we will see him again after Yom Tov. Today we went to a farm where Dovi delighted in touching the sheep - and then tried to climb into the pen! We had to strap him back into the stroller, real quick....
Before I continue on to the next topic, which is another incredible Divine Providence story, I'd to close out the Home Health Aide series. The third aide sent by the agency, Leticia, turned out to be a good fit. She is extremely devoted to Dovi, who loves her back. Unfortunately, she doesn't really like doing housework, so we did lose our 'clean house' that we were used to during Danuta's time. She is also late a lot, and spends a lot of time on her Iphone. But on the plus side, she does a great job feeding Dovi and giving him baths and getting him into pajamas. While we sometimes have minor issues or arguments, we get along pretty well and she is really not a bother; our family can go about our business while she's here, and she doesn't ask for anything. It's great to have someone in the house during busy times like Yom Tov when there is no school. One of the best things that came out of Leticia's presence is that Chaim learned a perfect English around her. All in all, she's a lifesaver; we feel her absence keenly on Sundays (she only works Monday to Friday) and on the few legal holidays that she actually takes off, like Thanksgiving and Xmas. I am grateful every day for the existence of homecare for children with disabilities and that it's relatively simple to set up. If anyone reading this lives in New York and has a child with a disability and a pediatrician that will gladly work with you to request homecare, message me for the phone number of the agency we use.
Anyway, moving on....
Pesach 2012 wasn't especially eventful, except for the one infamous morning when Dovi spilled an entire 10 ounce jar of coffee and smeared it all over the kitchen. (Thankfully, this year, the cabinets are shut with kinderguards and such incidents no longer repeat themselves.) After Pesach, things fell right back into routine; Dovi continued at TABAC and we were reaping the fruits of the new, improved Dovi who was actually understanding directives and following them, although he was still his very hyperactive / stimmy self. (It's remarkable to me now to read back my facebook/livejournal entries from a year ago; Thanks to another year of therapy and medication Dovi is even better at this point with his comprehension and behavior. Every year makes a difference!...) It was time, however, to tackle the huge, looming, annual question...
What should we do for the summer?
As you may recall, we spent that first summer after Dovi's diagnosis in the country. It was tough, because Dovi tended to run off and didn't respond to his name. so it was always scary. It was also a burden to keep coordinating his many therapies, which he hated. The second summer we spent in the city, and only went to the country the last 3 weeks - and it had been even harder, since I'd had 0 help for him - and he still tended to run off. So we had a decision to make. Should we rather go to the country the first six weeks and get together a roster of therapists, as we had done the first year, and come back home for the final three weeks, get together a roster of res hab counselors to keep him out of the house - or should we do the opposite? Stay home so Dovi does his six weeks at TABAC and go away for 3 weeks but make sure we have enough help upstate? I had gotten to used to and dependent on my constant help; the res hab, respite, home health aide, volunteers - I wouldn't have any of that available upstate, and I would have a hard time finding enough res hab girls and weekend volunteers for six whole weeks in the city. It was a big dilemma. Summer is always a huge dilemma. (I had hoped the dilemma would be behind us once Dovi was old enough to attend camp, but apparently he is still too young for camp this summer, and the Board of Ed won't pay for kids who get 1-on-1 instruction during the year if they can't get it in camp. So even for this year we're still stuck; we'll probably stay home so he can finish up at TABAC. But that'll be in a future post.)
After a lot of thinking, we decided to brave it and go upstate for the first six weeks. It would be the lesser of the 2 evils; if we got together a roster of therapists so Dovi had a schedule from, say 10 am to 3 pm, and a girl available to keep him busy until 5 pm, it was defintiely easier than 3 whole weeks with very little help; I probaby wouldnt be able to find enough res hab girls available for the entire day. It would be daunting, and I was terrified, but I had to do this for Chaim, for my husband, and even for Dovi. Dovi thrives in the fresh air and the social opportunities upstate, and my husband loves the weekends in the country. Chaim, too, craves the great outdoors and cooler weather, which we don't have here in the summer.
So it was settled. We were going to the country for six weeks.
The questions, however were: Where? And who would service Dovi those six weeks?
I did not dream that the answers to those 2 questions would be incredibly complicated and long in coming. And when the answers would finally come, I would be knocked off my feet in shock and once again humbly hang my head and acknowledge that HaShem is Good, He loves me, and is looking out for Dovi and my family with a special dose of kindness and love.
Several month earlier when I was making my gazillion phone calls, Camp HASC had been one of those calls. I wanted to sign up Dovi for day camp, figuring we would go to the country, he would be off grounds for the day, and we'd have res hab for later. But the autism class was already full- and it was only January. When I shared my disappointment with Zehava of TABAC, she assured me that TABAC would send us therapists to the country. So when I called her on it now in May, I was taken aback when she was kind of lukewarm about the whole thing; she didn't think she had anyone who was good for Dovi who was also going upstate. WHAT???
I was upset, and lost. So I did what I do best: I started networking, big time. I posted on Facebook. On Imamother. I placed ads in the paper. The problem was, I had no idea where in the Catskills I would be. So everyone who called, I told I was flexible. We did have an eye on a bungalow colony in White Lake where my husband's friends went. I wasn't very happy with the idea of that, because I felt we needed to be more centrally located, with more therapists in the area and more bungalow colonies with girls who could drive over to do Res Hab.
The first week or two yielded very little results. I got 2 responses to my ad from Swan Lake, which sounded promising. One of them actually knew Dovi a little bit ; she worked in TABAC and worked with him briefly. I started working out a scheme in which I would hire a female driver to take Dovi over to one colony in the morning, where he would have 3 hours of therapy, and she would walk him over to the other colony nearby and he would get his other 2 hours of therapy, and then I would either pick him up by cab or have another heimishe driver bring him back. It finally seemed like something was happening. But then the therapist who knew Dovi decided that she rather wanted to work from 3-5 pm. That would not work; It meant he would have nothing to do all morning, and he would leave just when Chaim would come home from day camp. Then the therapist got cold feet; she didn't know if she wanted to work so hard in the summer- Dovi is not an easy charge. So the plan started disintegrating. I had no other leads. I kept begging my husband to finalize on the bungalow already so I had a definite location to give the callers, but he kept hedging - which ended up being the best thing that happened to us.
I put out feelers everywhere. I called all the other branches of TABAC and got nowhere. A therapist was available at Camp Kaylie, but I didnt have a bungalow colony nearby to go to. The Crown Heights branch had some "possibilities" but they never got back to me. Darling Becca, from my EI days, told me quietly not to panic, as most therapists had not given in their definite summer plans yet and surely, surely something would come up at the last minute. Zehava then went away for a week for Lag B'omer, and I was helplessly twiddling my thumbs. It was six weeks before the summer season and we still had no bungalow and no therapists. I was losing my mind.
I placed ads in circulars targeting Monroe, Monsey, and Boro Park, hoping I would get some calls. There were some snafus, however; Hamodia ommitted the word "Catskills" from the ad and I got many phone calls regarding a city summer job. My one lead, in Liberty, fell through. My husband still hadn't finalized the bungalow in White Lake. So one fine morning I raised my hands to HaShem and said, "That's it. I've done mine. I can't find therapists. We haven't found a bungalow. I give up. G-d, if you want us to be in the country for the first six weeks of the summer, then please figure it all out for me. I can't. I'm done."
A week later, things suddenly began happening... one after the other, leaving me shocked and amazed.
I will leave you off here as I don't think I will have time to complete the story before the 2nd days of Pesach.
To be continued....