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Monday, August 14, 2017

Three Cheers for Camp!

One of the most amazing points of pride in the Jewish special needs universe is the existence of sleepaway summer camp for special needs kids. While the general population doesn't usually go to sleepaway camp before age 11 or so, when it comes to special needs, many parents look forward to their child turning five years old so he or she can go to camp.

The main attraction for sending a child to camp is, of course, to get a much-needed break; often, the child's family goes away for the summer and there's no educational framework for the child to attend. But aside from the breather the family gets from the overwhelming burden of caring for said child, summer camp provides an opportune environment for every child to grow and blossom in ways they can't during the academic school year in a cramped city apartment. This applies even more to special needs children, especially with sensory processing disorders.

When Dovi was 2 and initially started Early Intervention, his therapists remarked that he did a lot better outdoors than when he was forced to sit in a room. Back home in the city he loved running outside, and there was very little opportunity to do so in a safe way. The following two summers, as you read here, were incredibly difficult. It was very hard to chase after Dovi all day in the country, even with help, and I knew that I could simply not do it again; unless Dovi would go to summer camp, my family's summers up in the country were history. And it hurt to even consider it; Dovi thrived so much upstate with the open expanse of grass and trees with access to playgrounds, swimming, and sensory opportunities everywhere. I knew that I had to find a way to get Dovi into camp.

While a plethora of camps exist for Jewish special needs children in New York, many of them are niche camps for specific disabilities. There's Camp Simcha for children with physical disabilities, which runs for 2 weeks each summer; Camp Kesher for high functioning girls; Camp Chaverim for older boys; Camp Ruach Hachaim for older, relatively high functioning boys; Camp Kaylie, an integrated camp for higher functioning kids; and a handful of others. But there are only 2 camps that take kids from age 5. Although I'm fairly sure that most people reading this will know which 2 camps I am talking about, since I will be getting into real detail about them, I won't use their real names or link to them. Let's call them... Camp A and Camp B.

Camp A is large, professionally run, and world famous. They have over 300 kids (and adults) in camp every summer. It is billed everywhere as "Heaven on Earth" and they run massive fundraisers and a concert annually. It's an incredible camp; The kids have a blast, and many kids make major progress during the summer with therapy.

Camp B is a lot smaller and run more 'heimish'. At the time it was funded by a Medicaid Waiver agency. Since the counselors are all girls (Camp A is co-ed though divided by gender), boys age out when they turn 9 years old. I had never really heard of Camp B, only in passing.

Naturally, I really wanted Dovi in Camp A. It was my dream - for him, for the family.

Before the summer that Dovi turned four which we spent in "Kiamesha Hills", I became friendly with a woman in my support group, whom I'll refer to as Yolanda. Yolanda's son, Josh, is very similar to Dovi - although he is a LOT older - and we became very good friends. That spring she told me that Josh had spent 3 summers at Camp B and he loved it there. The counselors were more 'heimish' than Camp A, often Yiddish-speaking. Josh was already 10 years old, and he would be attending Camp A that summer.

Camp A also ran a daycamp program for kids who were too young for sleepaway camp, and I tried to get Dovi in for that summer - but I was too late. I called in January, and by then the autism class was full. Besides, said the lady at the other end of the phone, Dovi was classified as 1:1 and their class was 6:1, so the Board of Ed wouldn't pay. I tried calling Camp B, but was told they don't do day camp, and even though they had a select few 4 year olds for sleepaway they thought Dovi was a little too young for sleepaway and told me to call back the next summer.

Several days into the camp season, Yolanda called me with some bad news. Josh was kicked out of Camp A. After a few days. What???

Apparently Josh had gotten aggressive and hurt another camper badly enough to cause injury to the child, and Josh was sent home with instructions to see a psychiatrist and get on a better medication regimen. I was stunned.

I won't go into the details of the story and whether Camp A was right or wrong - it is what it is. But over the last few years, many kids with behavior issues were sent home from Camp A, not accepted for the following year, or not accepted in the first place. There are plenty of children with behavior issues in that camp, so it's not an across-the-board issue, but it happens a lot. It's something they prefer not to have to handle.

That worried me a little; but Dovi was still very little and very innocent and I knew that a little five year old couldn't inflict bodily injury the way a 10 year old can, and if they felt they could handle him, they would accept him. (A big part of the issue was, I think, that Yolanda hadn't really explained to Josh's counselors exactly what he does and how to handle his issues. Every single time Dovi went away for any reason, I briefed the caregiver very thoroughly on what to expect.)

It seems that Josh had an easier time at Camp B. The director knew him well and the counselors there somehow managed  him. Maybe Camp A is too overwhelming for severely autistic kids. I don't know. But Yolanda was waxing lyrical about how incredible Camp B was.  I still preferred to get Dovi into Camp A because of its reputation. I had little to go on with Camp B.

Before I went through my infertility cycle, I pored over the calendar copiously. I knew that I needed as much time as possible to recuperate after birth, since I would be having a scheduled C-section early in the ninth month. (That's what the doctor who delivered Dovi decided I needed, after the terrible pelvic infection I experienced shortly after his birth.) Since camp started on July 2 and ended on August 15, I calculated the cycle precisely so that if it worked, I'd be due at the very end of July, have the C-Section a day or two after Dovi left for camp, which gave me six whole weeks to recuperate.

Well, man plans, and G-d laughs. Heartily. None of my careful calculations worked out, and none of it ended up mattering, because HaShem had way better plans for me.

Firstly, as you probably already read in an earlier entry, the cycle ended up pushed off by ten days thanks to Hurricane Sandy. That gave me a a bit of a later due date - July 30 - but if I gave birth very early in July I could still have five or six weeks time to recuperate.

The second monkeywrench in my plans was my phone call to Camp A to apply Dovi for camp. I called really early - in mid-October - but the woman on the phone found a million different reasons why Dovi was ineligible for camp. He hadn't yet aged out of preschool, and the Board of Ed would not pay for camp for kids in preschool. Also, he still had an IEP of 1:1, which their autism class didn't have. I started panicking a little bit, and tried to work it out with the Camp. She told me to first fill out seventy million forms, and she would look through them and get back to me.

I posted on Facebook about my dilemma, wondering aloud if I should also give in an application at Camp B. An old friend urgently messaged me not to consider Camp B, because it was really not geared to children like Dovi. Runners don't do well at Camp B, she said. The place is run down. The counselors don't know what they're doing. etc. etc. It was really disconcerting.

As it turned out, this friend had worked in Camp B a long, long time ago - at least a decade earlier - and the camp had improved tremendously since then. But it was enough to scare me off.

My plans kept unraveling. When I took Dovi for his interview at the school he didn't eventually end up going to, I discussed summer camp. The woman who interviewed me said that there was no such thing as going away to camp if Dovi would attend that school, because it would hinder the case with the Board of Ed. I was devastated. From what I'd been told, speaking to other mothers - especially mothers who sent to that school - it was definitely possible for a child to go to camp, you just had to pay a little more because the BOE wouldn't pay for the 2 summer months and the school wanted full tuition, or something like that. But they were adamant that he certainly couldn't go to camp that summer, since they wanted him to start school already in July. I was stunned and very upset. I had built a whole house of cards on the idea of Dovi going to camp that summer. Finding him a place to stay while I recuperate from a C-section would be very daunting.

I began scrounging around for options. I didn't want to inform The Respite House yet that I was expecting, but I asked them anyway whether they would be open in the summer. They were usually open only after camp ended  -- in late August -- but that summer would be the first time they were considering being open. The normal maximum amount for a consecutive stay was one week, but for a kimpeturin  they extended it to 10 days. That actually sounded pretty good; Dovi could go to Mrs. G. for 2 weeks, followed by 10 days at the Respite House. That was almost a month. Not bad.

(Ironically, the way things turned out, Dovi came home when I was 23 days postpartum, pretty much the same amount of time had this plan ended up working. Now, in hindsight, I don't know how I was able to manage with a newborn baby plus Dovi. God gave me an extra amount of strength and resources to get through those days. Looking back later I was amazed that I wanted him home so soon after giving birth and didn't send him somewhere else for a few more weeks. In later summers, Dovi would end up being away for 8-10 weeks at a stretch. But at the time he was so little and I felt it would be way too confusing for him to be at different places. I did say that if I had another baby while he was still living at home, he'd go to Mrs. G. for 2 months at least... one of my friends whose daughter was in Dovi's class the past few years, left her daughter at Mrs. G's for four whole months after giving birth, which was a little nuts. But I think she hoped that her daughter would eventually stay living at Mrs. G.... she approaches the whole situation differnetly than I do. But anyway, I'm off on a tangent. Let's get back to the topic at hand!)

Later in the winter when the school situation heated up and I was back-and-forth with the lawyer all the time trying to figure out how to make it work, the lawyer wanted Dovi to start school in September instead of July; it would give her a better case to settle with the Board of Ed. (This lawyer does this a lot; she made a friend of mine wait until October to start her son in school, and she nearly lost her mind over the High Holidays with him home full time!) The lawyer ended up convincing the school, and when I quickly called back Camp A to check if they still had any slots available, got the same response... He's still in CPSE, we can't service 1:1, etc. etc....

In desperation I decided to swallow my misgivings and call Camp B. But my last hope was shattered when the woman on the phone informed me that Camp B wasn't opening that summer at all. The Board of Ed was stopping to pay for summer camp at all; they refused to pay for all the students of the previous summer and they were left with staggering debt and there was no way they were reopening.

It was official. Dovi wasn't going to camp that summer. He would be home in the city, and we would cope somehow. The prospect was extremely daunting; all of his com-hab girls were going to camp; his Shabbos volunteers were going to camp; I wasn't feeling very good about Leticia anymore either. But we would persevere somehow. At least I could plan everything around the scheduled C-section and not have to leave things up in the air, right?


I had been planning all along to see the same medical group that had delivered Chaim and Dovi. But shortly before I got pregnant with Levi, they stopped taking my insurance. I was left with the option of jumping backwards through flaming hoops to get the kind of insurance they accepted, or to see another doctor who did take my insurance. I opted for the latter, because the MFM group's office was a long train ride away and visits there were very draining, and the hospital they delivered in was very far. Dr. R.'s office was a lot closer and more easily accessible, and the hospital closer to home.

I had to wait until I was 10 weeks along to see Dr. R., because my new insurance would not kick in until January 1. It was a nerve wracking time for me, because my final visit with the RE was at 6 weeks. Four weeks was very long for me to go without knowing that everything was okay; I was terrified of showing up at the dr and finding out, God forbid, that there was no heartbeat for a few weeks already. The bleeding incident at 7 weeks along turned out to be a blessing, because now I only had to wait 3 weeks for my first appointmt with Dr. R instead of 4 weeks.

The appointment was uneventful. History... due date... ultrasound... I told them everything from A to Z, then sat down to talk to Dr. R. I detailed the incident with the pelvic abscess I had experienced 4 years earlier, and combined with a fistula I had a result of the episiotomy, both my RE and my former MFM felt it was dangerous to deliver naturally, and I should have a C-section scheduled so that there would be no option of my water breaking (which is how I went into labor with Dovi). Dr. R. would have none of it. "You're not having a C-section under my watch!!!" It turns out that Dr. R. is well known for a very low C-section rate despite having a very high risk clientele. He is a risk taker and does VBACs, VBA2Cs, and maybe even the occasional VBA3Cs. He felt that the infection had been caused by the episiotomy, not the waters breaking, and he would make sure that the baby would be small, thus I wouldn't need forceps like at Dovi's delivery, and I wouldn't tear much. (Um, I had forceps bc I was exhausted after 2 hours of pushing... the baby was not big, and there's nothing you can do to keep a baby small... but whatever...) The bottom line was, he would not schedule a C-section if he could help it.


That COMPLETELY derailed the last vestige of being remotely in control of when to give birth, and it threw me into a panic. So now I wasn't going to give birth early in July, while Dovi still had summer school. Now I was suddenly due on July 30, and if I made it to my due date or beyond, Dovi would be done with school by August 12, leaving him with no day program at all for his stay at Mrs. G. / Respite House. (As it turns out, the Respite House runs its own 'camp after camp' program the week after camp ends, but somehow they didn't offer it to me, perhaps because they felt Dovi was too difficult to manage.) And this also meant that I had no idea when I would go into labor, leaving me kind of stuck with options on who would step in to manage Dovi. Would my mother be able to handle him for so many hours? What if it was on Shabbos and I couldn't even notify her to come over? It was a mess.

On the other hand, I was relieved that I wouldn't be having a c-section, because recovery is a lot more difficult and prolonged than after a regular delivery. As it turned out, G-d really was looking out for me - I had the smoothest and easiest recovery after Levi's birth.

I spent the entire winter and spring worrying myself sick. My brain was in constant overdrive. Aside from dealing with the very confusing and difficult schooling decision, I was also trying to figure out arrangements for Dovi for my postpartum period. I asked the ambulette company if they would be able to transport Dovi from Mrs. G. / Respite House to his ABA Center. I sat down with the director of the Afterschool program and begged her to accept Dovi for the three-week-long after-camp program, as there was literally no way he could be home all day with me and a newborn baby. She promised me she would try to find really good staff for  him and provide him with a 1:1. (the program ended up being a lifesaver and a disaster at once. I will write about it in a future post.) Then I discovered that the ABA Center actually finished summer sessions on August 9, not August 12, and the Clinic's after-camp program only started on the 13th. Then the Clinic asked me to try find a counselor for Dovi, or perhaps an aide. Huh? Leticia then informed me that she was taking some time off to go on vacation with her boys in August. Things looked bleaker and bleaker. The world swam around me. I just couldn't handle it all.

Three months before I was due to give birth I finally hit rock bottom and did what I should've done all along; the only thing that works, the thing I kept seeing over and over and somehow didn't seem to absorb before it was almost too late: I surrendered my worries to Hashem. I picked up my hands, told Him it was way too much for me and He just had to figure it out for me the way He did the summer before with the amazing setup of counselors at Kiameshe Hills. I just couldn't do it myself, and that was it. He had to help me - there was no other way.

And He did!

Several weeks later, after one of my therapy sessions with Linda, I went upstairs to see my Medicaid Service Coordinators, Marilyn and Jenna, like I often did when I visited the Clinic. Jenna looked at me thoughtfully and said, "I don't think it's really applicable to you, but I'm so happy, I just have to tell you this. Remember Camp B? It's actually reopening. At the last minute. A community activist got involved and raised funds to reopen the camp. I'm so happy! There are so many kids who were stuck for the summer, and they now have a camp to go to! Do you think it is helpful for Dovi?"

My knee-jerk reaction was, "Nah! Camp B is not set up for Dovi. I don't think they'll ever take him. I already made arrangements with The Respite House... And anywy I don't think I can be away from him for six weeks... I dunno."

But Jenna urged me to think it over. "The director of the camp is my first cousin's daughter. I have some pull with her. I can call her and tell her what an urgent case this is. I think we might be able to make it work."

My heart started racing. Was it really possible?

I held my breath for the next month as back-and-forth phone calls and conversations ensued. I described Dovi to Shelly very honestly; his tendency to elope, his need to sleep in a tent - which they did not allow - the million eyes that were needed to keep on him at all times, his safety issues around water, etc. I was sure she would be turned off. I had my doubts as well, and I was very nervous. She came down to see Dovi at the ABA Center, and he was actually quite well behaved, and he surprised me a lot - I had never really sat in on a session and was amazed at the things he had already learned, which never translated into his behavior at home....

Shelly thought it over, and a month before camp, began, she officially accepted him.

And just like that, my endless tangle of worries were over. Dovi had a place to be for the summer. I could spend the ninth month of pregnancy doing real things like organizing, nesting, shopping, figuring out a setup to handle a newborn baby and Dovi once he came home, etc. - and I didn't have to worry anymore what to do with him while I was in labor.

I was amazed at the twist of fate here. Hashem had orchestrated it all behind the scenes. Things that had seemed so bleak were a blessing in disguise. Because Camp B was supposedly not opening for the summer, many families had found other options for their kids, and suddenly there were slots available. The camp has capacity for 60 children, but now they only had enrollment of 40. there were 20 vacancies!!! Dovi would probably have not been able to get in otherwise. And amazingly, Josh was allowed to come that summer, even though he was already 11 years old - because there were so many empty beds to fill. It would be a lifesaver for Yolanda. Dovi ended up sharing a cubicle with Josh!

There were, of course, tons and tons of things to do to make it a reality. Endless reams of forms to fill out, shopping to do over my head, medical forms and letters.... He would be allowed to have his Ready Set Bloom tent with him as long as it had a doctor's note. He wouldn't be taken to the lake so that he wouldn't know there was a lake. He would get a good counselor who could deal with his level of activity. (Shelly is well known for making incredible matches between kids and counselors.)

While the preparations for the exciting summer ramped up, trouble of another sort started brewing, big-time. My relationship with Leticia, which had taken a southern turn that year, began unraveling to the point of no return. And yet again, what seemed like a disastrous situation would end up being one of the biggest blessings in disguise in the sage of Dovi.

Stay Tuned!


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