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Sunday, April 14, 2013

Summertime, and the Livin' Ain't Easy, Take 3

You may be wondering if I have a photographic memory, churning up these posts about past years and months down to the last detail. But in truth, I spend hours combing my Facebook archives for my old status updates in order to formulate the entries on this blog. Of course, I also remember these events in vivid detail, but I do need to reread my old posts to firm them up. Whenever I do this, I am stunned just at how much I managed to undertake, implement, execute, and survive. Where did I take strength to do all this? I marvel. I don't know. Seriously.

Reading just how much energy, effort, and sheer action I had to put in during the seven weeks we spent at "Kiamesha Hills" leaves me breathless and exhausted, and I'm sitting down while reading this. I honestly do not know how on earth I undertook such a daunting, strenuous, overwhelming task as this. And I am just as honestly admitting that I probably do not have what it takes to do it again. I'm afraid that by and large our 'country days' are probably over, unless Dovi ends up being able to go to summer camp, or staying with a respite family in the city for a couple of weeks. Doing what I did last summer - being there full time with Dovi without our usual roster of respite helpers - is not something I think I can do again.

It was that hard.

Oddly enough, it wasn't always Dovi that made the experience so draining - more often than not, it was Chaim. The Chaim of last summer was a different child than he is today. The combination of an amazing Rebbe, and privately paid social skills classes has turned him into a mature, socially aware and self-aware child. But last summer he still had social issues and behavior issues, so he did not make friends at the new bungalow colony. Additionally, I am not a firm authority figure, and without my husband there all week to keep him in line, everything was a struggle.

The bungalow was actually pretty decent. The kitchen was huge, the bedrooms serviceable, and the location prime. The first few days were a struggle, though; many of the electrical outlets didnt work, the phone line didnt work, and the biggest problem to plague us all summer was the leaky porch roof. Every time it rained, there was a flood on the porch. Which meant that Dovi delightfully splashed in the flood, and I was kept busy draining the porch by means of a squeeze mop.

It took me a couple of days to make friends. I only knew about two or three people there personally; the one who had been really rude and nasty to me ended up becoming my closest friend and helpmate in the circle. It turned out to be a bit of a misunderstanding; I knew that she didn't know me well at all and therefore was worried and wary that I would be one of those 'close-minded', judgmental individuals who had snarky comments to say on the other women. "Close-minded" is the last adjective to describe me! I really enjoyed the refreshing change of spending the summer among people who had no connection to my family or immediate community, where I could be myself and be frank, open, and honest about myself, my life, and my struggles. It was therapeutic and fun.

A couple of weeks into the summer I was asked to give a talk on Shabbos afternoon. It was the first time I had gotten up to speak about my experiences raising Dovi. It was a talk I had been dying to give for a long, long time. It took 45 minutes and was the basic foundation on which I built this blog. I spoke about the five stages of grief, related my divine providence stories, and encouraged the women to appreciate the good in their lives and not to give up when the going got rough. There wasn't a dry eye in the 100+ strong crowd, and I got a lot of praise for my speech.

The funny thing is, when I analyze last summer, was it really worth it? Probably not. My husband didn't have anyone to exchange a single word with; he didn't know anyone on premises and the few men from the community did not try to socialize with him. I worked myself to the bone. Chaim didn't really have friends either, and he spent way too much time indoors watching videos. The only winners here were 1) my husband, for having a 'break' from Monday thru Thursday, and 2) Dovi. Dovi thrives upstate. The grass, the trees, the POOL!! But in reality, is it normal for a mother to rip herself to such shreds so that one member of her family gets to enjoy seven weeks of the summer outdoors?


For what it's worth, I can't say I didn't enjoy the summer. I would have probably relaxed a lot more in the city, but I would have been miserable. I will miss going upstate this summer, but it's simply not possible to repeat the grueling setup of last summer. It makes me sad, however, that Dovi will not get to go to camp for the foreseeable future, and we won't be able to go to the country for the foreseeable future either, because of rule changes about the Board of Ed paying for off-school summer therapy. Dovi would be a shoo-in for Camp HASC; based on how much he loves going to the Respite House and how much he loves the outdoors and the swimming pool, it would be a Godsend for him. I only hope and pray that that the rules change in the future years so that the kids who don't attend non-public special-ed schools can still go to camp, for it makes me very sad to picture him languishing in the city year after year when he would thrive in so many ways upstate in the summer.

The first few days last summer were very, very difficult. Dovi had a hard time falling asleep and staying asleep on the flimsy crib mattress. Chaim did not have a day camp program until Wednesday. I was no longer used to being up nights like that; I walked around bleary eyed with no chance for a nap, a flying bungalow, and very little help; the very devoted, very sweet Res Hab girl only took Dovi for about an hour a day. When Chaim was finally settled into day camp, and my husband brought Dovi's familiar crib mattress out from the city, things finally got into more of a routine. Yet, I had it extremely hard.

My daily schedule went something like this: Woke up the kids, prepared breakfast for them both - there was no breakfast/lunch program in the colony, oddly enough - in all the colonies I had been before, the affiliated community was savvy enough to get funding for a lunch program, so that I simply had to send Chaim to the dining room for breakfast - and I had to get the boys dressed and ready to leave by 9:55. I dropped off Chaim at day camp and Dovi at his therapist's bungalow - and then I had all of 2 1/2 hours to do everything - eat, clean up, relax a bit, catch up on my emails and phone calls, and maybe sit out with the ladies a bit. I walked to Walmart one day, which was a bad idea; I came back exhausted, soaked, and famished, with no time to catch my breath before the troops came home. At 12:30, Chaim came home for lunch and at 1:00 Dovi came home for lunch. At 1:30 Chaim went back to day camp and at 2:00 pm Dovi's afternoon therapist came to my bungalow. Which meant the bungalow had to be clean and presentable enough for her, and I was locked out of the 2 bedrooms since we had to keep the rooms locked so Dovi didn't run away. It was really hard to sit in my kitchen and listen to Dovi's crying; he didn't always want to do what the therapists wanted him to do, and often the therapists had all kinds of minor requests for me. I felt extremely pressured to keep the bungalow clean and it was nigh impossible; I didn't have the cabinet locks as I did in the city, or the right fridge locks. The washer was always leaking, there was always laundry everywhere, and I was wrung out from cleaning up so many times a day. All the other women had cleaning help, but none of them ever seemed available for me to use. At 3:00 Chaim was back from day camp, and he usually refused to go swimming, so that was it; I was stuck trying to entertain him for hours. He always needed something else; chalk, bubbles, toys, videos. He spent hours and hours watching Marvelous Middos Machine and Mickey Mouse. Dovi's Monday & Wednesday therapist left at 4:30, and his Tuesday & Thursday therapist left at 5:00. At 5:30 the Res Hab girl came to pick him up, and Chaim finally got some company as the boys who went off grounds (more on that later) came home, and I spent that hour frantically cooking supper (which they often didn't want to eat). After supper I spent some time chasing Dovi around the grounds, and at 7:00 I gave him a bath and put him to bed. Then the struggle to get Chaim to bed commenced. He often wanted to go night swimming, so I accompanied him (the pool was next door to the bungalow so I could take a baby monitor with me to keep an 'ear' on Dovi), and only then, at 8:30 pm, he would take a very long bath, finally get into pj's, and we had our requisite 10 minutes 'Mommy time" which usually turned into half an hour. We spent some quality time together and walked around the grounds playing 21 questions. He often was not in bed before 10:30 pm, and at that point, exhausted and craving adult company, when I wanted to sit out with the ladies, he would not let me - he was 'scared' to stay in the bungalow. So I often had to lay down in my bed and wait for him to fall asleep; at which point it was close to midnight. Stupidly, instead of going to sleep, I often started watching my comedy shows until 1 or 2 a.m., and then had no energy to get up at 8 a.m....

It was frenetic, constant activity. You might be rolling your eyes and thinking, "That's what life with little kids is all about" - but believe me, it was simply physically exhausting. It was also nerve-wracking and pressuring to know that I was responsible for Dovi's safety and well-being on my own; picture a toddler with no safety awareness who runs away. I was always looking for him; I knew where his few favorite haunts were and I tried not to let him out of my sight, but it was very tempting and annoying when everyone was socializing in the circle in the center of the colony while I had to follow him around and make sure he didn't wander off. Other four year olds were trustworthy enough to hang around their mothers in the gated colony; the playground was in clear sight; but with Dovi, one could never feel safe or secure. In the city, I would have had longer res hab hours, the home health aide, and my husband to take over some of the burden, but out there, it was all on me, and it felt very overwhelming.

The lack of cleaning help was the hardest. After doing all of that, I was still left with an extremely messy bungalow that I could just never keep on top of. My next door neighbor, a fastidious woman who leads a pretty charmed life, was absolutely shocked when she once came in to ask me to babysit her infant while she took a power walk. Like the vast majority of the women at Kiamesha Hills, she is financially well off. She decided to take matters into her own hands, and she took up a collection among the ladies. For my birthday, she presented me with $200 cash and told me to take as much cleaning help as I needed. There was one cleaning woman available anytime, who charged $20 an hour, so I had only reserved her for Fridays. Now I was able to avail myself more easily of cleaning help, and I asked around in the entire place for spare cleaning help. It was a big relief and gave me a big mental boost to at least walk into a neat, clean bungalow after a long, draining day of tending to both boys' constant needs and requests and carrying the 'burden of care' myself.

Weekends weren't easy either, even though my husband was home to help. We had gotten spoiled by having Dovi away for Shabbos once a month, and volunteers for the Shabbosim when he is home. He also had no Sunday program either, so it was up to us to fill his time productively and keep him out of trouble. My husband loved taking him swimming, and he also took him off grounds to parks (there was a gaping lack of playground equipment at Kiamesha Hills). But that meant that his weekends with the family were far from the vacation the country usually is; being in charge of Dovi with very little respite is physically and emotionally draining.

Despite all of the downsides, it was still lovely being in the Catskills for the summer instead of sitting locked in to the house in the sweltering city (where Dovi wouldn't have had a Sunday respite program either, and most of his Shabbos volunteers were in camp anyway) with no access to a pool. I took the kids out for pizza, to town for ice cream and the ball pit, and on endless playground jaunts, where Dovi loved the slides, see-saws, and swings. Dovi's favorite activity was tearing leaves off the trees; he loved to climb onto a neighbor's porch, onto the porch railing, and tearing leaves off. That left my heart in my throat as I kept taking him off the porch railing, or holding tightly onto him while he ripped into the leaves. Later, this family got two ducklings for a week; Dovi loves animals and it was a massive challenge to keep him away from the ducklings. I had an endless supply of toys and games for Dovi; a bubble machine, balloons by the dozen, and I filled his sensory bin with rice and let him play in it in lieu of a sandbox. It was Mommy camp every afternoon and when there was no therapy schedule.

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Kiamesha Hills has two heated pools, which is exactly what Dovi needed. Taking him to the pool was an exhilarating but terrifying experience. Dovi has no concept of danger and drowning and did not understand that the deep water was dangerous. He would try every which way to get into the deeper water, and wrest himself out of my hands and run to the deep end. I had to hold very tightly onto him while in the water, and the real trouble began when it was time to leave; he would refuse to leave and climb out of the stroller, so I was unable to dry myself off and get dressed to leave. Once we got back into the bungalow, he was starving, so he would go on a food rampage while I tried to change back into dry clothes. So while I tried to take him to the pool every day, knowing how much he loved it, it left my physically depleted and was mentally terrifying at the same time.

I don't know why it took me a week to realize that the child simply needed a life jacket. My husband brought one up from the city, and it got a lot less scarier after that. I  was able to go with him into the 3-feet section instead of sticking to the baby pool, and I tried teaching him to swim. He caught on instantly. He loved putting his head into the water and holding his breath. It was still physically draining - he is not a lightweight, and the added water weight in the life vest made it heavier; my arms were literally weak after an hour of holding on to him in the pool or running after him outside. I finally figured out a system; twice a week he went swimming with the res hab, and the other two times I took him during his lunch break at 1;30 after Chaim went back to day camp, and had his afternoon therapist pick him up at 2:00, take him to the bungalow and change him, while I stayed in the pool for another hour or so to swim or just float on a floatie.

It was during the very last week of the summer when I discovered something by total accident: i could let go of Dovi and he was able to swim, with his life jacket. I don't know why I had been so scared to let go. Every pool experience was a struggle, with him trying to break free, and me super scared to let him. But when we were in only 3 or 4 feet of water and I had my footing, it was perfectly safe to be right next to him, let go, and let him swim. He loved it! Until then, I used to hold tightly on to him when he jumped into the water. Now, I let him jump into the water by himelf, since he came right back up and began swimming. There was a lifeguard on premises, and while her heart was in her throat as long as Dovi was in the pool (she asked me not to bring him during childrens' hour because she could not keep an eye on him and the kids at the same time, and I tried to accommodate her), she soon saw that while his life jacket was  on, he swam wonderfully, and with me trailing him - while not holding on to him, he was enjoying it tremendously and was safe.

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Now that Dovi had learned to swim and loved the pool so much, it made the pool even more hazardous during the times we were not inside. He constantly tried to get into the pool; I had to watch over him like a hawk anytime the pool was in use, because people came in and out, and the second he saw the pool door was open, he darted between people's legs into the pool area. If it was women's hours, I was able to run right after him, but if it was during boys' time I was in bigger trouble as I couldn't run in. I had to stake out the pool door and keep it vigilantly closed. A bigger challenge was in the early mornings, when the janitor cleaned it out; he left the door open for just five seconds to bring his equipment out, and Dovi darted right in. I had to jump in after him, fully clothed. It was really nervewracking.

As you can see, as much as I loved being in the country, and as much as Dovi thrived there, the burden of being constantly alert and aware of his safety and whereabouts - with him being a nonverbal child with a low safety awareness - was a huge mental drain. I did this wholeheartedly for him and am glad that he had the experience - but it's something I can't see myself repeating in the near future, especially as he gets older and heavier (and as I get older too). Camp would be just the thing for him - with a one-on-one always in charge of him - and it's something I do hope he gets to experience again at some point in the future.

Even though his schedule was basically set up, there were always changes, as this therapist or that therapist needed to switch around, needed me to sign their Palm Pilot, etc. His darling Res Hab girl, at first didn't appreciate him fully, until I showed her the video documentary I had put together of Dovi's every early word and his subsequent decline. After that, her attitude changed and she was in total love with him, as was her mother and sisters. After 3 weeeks she left for camp and 2 other girls took over.

The situation with Chaim was getting harder and harder to handle. He spent hours indoors watching videos, refusing to do things like riding his bike or socializing with the other boys. Between keeping constant watch on Dovi and begging Chaim to do 'normal' boy things and go to bed on time, I was being squeezed to a pulp. So I made the difficult decision to send him to an off-ground day camp for the 2nd half of the summer. Many of the other boys in the colony attended that day camp for the same reason; the local day camp had too short hours. 10 - 12:30 and 1;30 - 3;30 was very short, especially for a boy that didn't want to go swimming afterwards. One or two of his buddies also switched for the second half. At first he was very excited, especially when some of his school classmates ended up being in that day camp, but soon his enthusiasm waned. With his social issues he was having a hard time making friends or enjoying the activities, and he quickly became a target of bullies. For me, this change was heaven-sent; he got on the bus at 10 a.m. and came back home at 6 p.m., having eaten all three meals at day camp. He didn't like the long hours, though, and still insisted on watching videos until bedtime. Bedtime continued being a struggle, and getting him awake and ready on time for the bus was a struggle as well. (Once or twice I let him sleep in and took him to camp by cab; it's not so far - I walked back, an hour-long walk). But at least my day was not as fractured and i was able to catch my breath and enjoy the country experience somewhat more than the first month.

Dovi's morning therapist began doing her sessions in my bungalow in August, which meant my bungalow was off-limits all day now (or I would hear him crying). The therapists got a little frustrated at the repetitiveness and monotony of Dovi's programs; he knew them all cold and they had nothing left to do after an hour or two. One of them devised her own sensory program using a rice-filled pillowcase and playing hide-and-seek with him. A new speech therapist came twice a week at 6 pm, someone I never thought would work out but surprisingly did. A new occupational therapist came early mornings - at 9:30 - and Dovi did not like her at all; she had unrealistic demands of him and it was heartbreaking to watch him cry in frustration (Ironically this OT works in School A; I ran into her during my tour there). During the last few days Dovi had very little therapy and I relied a lot on his res hab girls to keep him occupied. I can't say Dovi accomplished anything over the summer, therapy-wise or otherwise. It was a great way to keep his progress in check while still giving him the benefits of the glorious outdoors and the sensory experience of the grass and the pool. He probably would have accomplished more had we stayed in the city. But hey, the kid is allowed to breathe sometimes; he doesn't have to work hard 12 months a year....

All in all I was not sorry when it was time to go home. We stayed for almost 7 weeks. We gave it our best shot. My husband was eager to go home and back to his familiar shul and friends; I was looking forward to Chaim going back to his regular summer school with his friends; but I dreaded the long empty days with no help for Dovi. Three whole weeks between summer and school! I was already coming home from a truly exhausting summer and it was only going to get harder. (For this year, I put my foot down with the Clinic that they must enroll him in their after-camp program, even though they aren't keen on having him.) I spent hours on the phone interviewing res hab candidates for those three weeks, and as always, G-d did not desert me and I had a beautiful crop of candidates - I only had to coordinate them into a semblance of a schedule.

So our third summer after Dovi's diagnosis was over - and each one proved to be as difficult as the one before. Dovi's situation has forever altered our family, and things that are part and parcel of life in my community, such as going away for the summer, is something that can't be taken for granted and won't happen easily anymore. It's just another thing I had to accept and acknowledge as part of this nisayon (test).


  1. This post was worth the wait, thanks!!

    I have to ask you though, and please don't think I'm being critical, just curious: why not move to some place like Baltimore or Monroe or Atlanta or Eretz Yisroel? I realize you have very specific needs for a community - but is there really nothing else beside NYC? I wish I could buy Dovi a backyard!!

    1. It's not much of an option... I would lose my support network if I were to move away - there's nothing in the form of respite in Monroe, Monsey etc. - plus my parents, in laws, dh's job etc are all here. It would be uprooting my entire family just for Dovi's sake -I don't think it's fair to do that. I'm sure IYH something will happen in the future for him to be able to be upstate in some form over the summers - maybe we'll bring him up for a Shabbos or two or a week or whatever. Or when he's alittle older, like 10, there are other camps other than HASC that he can go to.

  2. Is there a daycamp option for Chaim where he can get out of the city a little?

    1. Chaim is too young for sleepaway camp. day camps are local.

  3. It's draining just to read this...

    I do hope you are able to work out a summer solution. Preferably including HASC. Although this sounds utterly impossible, you deserve to have a different change of pace in summer.

    And I can really relate to the comedy shows issue... it's so hard to go to sleep when you feel that you got NO TIME OF YOUR OWN. I do the equivalent far too often.

    1. I spoke to another mom last night (I call her "tova" here) and she gave me quite a few options for the future; all is not yet lost. I can either pay my way for hasc day camp or overnight, or there are other camps where he can go when he's older (and I'd have to pay most of it).


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