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Sunday, January 27, 2013

Summertime and the Livin' Ain't Easy -- Take 2

Life with Dovi is a constant learning process. I keep learning things about him I didn't know, and things about myself I didn't know. I keep finding out just how much I can take, and just how little I truly manage. I learn about my strengths, and also about my limitations.

I knew that going to the country for three weeks without any pre-set help for Dovi was going to be hard. But I had absolutely no inkling just how draining and exhausting it would be; how I would fall apart after only two weeks and have no idea how I would survive another week. But I did. And I still don't know how.

Those of you who have a really, really active toddler can maybe imagine what it's like. Imagine being in charge of that really, really active toddler (who does not nap) 24 hours a day, 5 days a week, with no break. And still keeping the house together and having laundry done and food on the table.

I knew all about Dovi's hyperactivity first hand, of course. I had just finished a grueling year of EI, in which I was always shuttling Dovi from place to place. We had just gotten over moving apartments and all that it entails. But I had so gotten used to having Dovi out of the house from 9:30 am til 6 pm every day, that I was sure that managing him for 3 weeks would be doable.


We arrived in Ellenville late Sunday afternoon in a massive downpour. My husband is almost allergic to rain. He despises it with every fiber of his being. having to shlep load after load of boxes from the parking lot into the bungalow did not make him a happy camper. Having to coop up the kids indoors into the tiny space, or alternately,  letting them out and then tracking mud and puddles all over the bungalow, made me an unhappy camper. We were waterlogged, exhausted, and had a pile of boxes to unpack, which I took a stab at that night. My husband had to get back to the city so that he could be at work at 9 a.m.

I was in charge- by myself.

The first day was a nightmare. It wasn't raining anymore, but the place was muddy and sopping wet. I had to finish unpacking while keeping Dovi at bay. I had to shlep across the entire colony twice a day, with Dovi in his stroller, to pick up meals - lunch and dinner. Once there, Dovi woudld bolt from the stroller while I tried to put the food together in containers. I had to find him, strap him back in the stroller, and navigate my way across the colony again with the food packages. Inevitably some of the food was spilled, the rest was cold, and no one wanted it. The main reason for choosing this colony - the food - was very soon moot.

Very quickly, things spiraled into chaos. I was embarrassed at how I just could not manage. I had no distractions - I had no internet connection - and was completely focused on Dovi. Yet, it was extremely difficult. I couldn't clean up the bungalow all day, until Dovi was finally safely ensconced in his crib tent. The cabinets were not child proof, and he spent the majority of the day unpacking it contents, or raiding the freezer. (Dovi has an extreme cold-tooth; he loves ices, ice cream, ice packs, frozen peas, anything that gives him frozen oral sensory input.) Chaim, too, needed my attention; when he came home from day camp I found myself torn in two; Dovi was constantly on the run, somewhere in the colony, but Chaim needed me too. The girl who had worked with the special needs child of the previous bungalow occupants did not want to continue doing it; it had been pretty difficult to do it for those first six weeks and she was glad to get a break. So I was completely stuck. I basically did not eat those three weeks; I dropped seven pounds. I lived on cups of coffee and bowls of cereal.

The kids LIVED IT UP. The grounds were magnificent, and there was a massive trampoline across the road. Dovi could not get enough of the trampoline; I took him over there several times a day. He had, until then, not mastered the art of jumping, i.e. lifting both feet off the ground; within two days, he was jumping like a pro.

(He also tried running to the trampoline at every given moment; once an unsuspecting adult 'kindly' led him across the road to the trampoline while I combed the entire colony looking for him. I finally found him across the road, sitting in the laundry room on a wash machine eating someone else's half-finished peanut butter sandwich. My heart was in my throat; it was such a close call, I can't even begin to think of what could have happened had he wandered further off. I refuse to think. G-d was truly watching over him. From then on I watched him like a hawk and didn't let him out of my sight for a minute. I locked the bungalow door when I was indoors, and followed him around like a stalker when he was outside. Of course, that meant having zero me-time; but I couldn't risk him running off again.)

Even more than that: For the first time ever, Dovi became social. He loved to look at what the other children on the trampoline were doing, and he would immediately mimic them. I was in shock. We clearly see every summer that Dovi flourishes and progresses amazingly when he's upstate. There's something about the big, open spaces and the exposure to other kids that does something to him.

Image may contain: one or more people, people standing and outdoor Image may contain: one or more people

I also took Dovi to the pool, which he loved. Unfortunately, it was very strenuous; he would not stay seated in his stroller and it was dangerous. I couldn't get dried off and dressed after swimming since he would bolt from the stroller and try to get into the pool. I had to resort to putting him into a tent that was meant for infants so that I could put my socks and robe on!

A major stressor was his continued biting. He bit me so badly in the chin in the pool once that I was stunned into tears. I took him to visit one of his volunteers who was staying in a camp just up the road, and he bit her out of excitement. I felt terrible. Thankfully he has stopped using biting as a form of communication; but it was terrible that summer.

Those three weeks were anything but vacation. I worked non stop from morning til night; first getting Chaim ready for day camp, occupying Dovi all day, getting everyone fed, bathed, and in bed- and only then would I would start cleaning up the vast mess that was the bungalow, manning the laundry, and finally sitting out a little bit to catch my breath - only to have Chaim come out of bed, whining that he was scared to be alone in the bungalow. There went my evening socialization. I just couldn't catch a break.

After a week of this, I started getting a little bit of help,  in the form of a cleaning lady graciously 'loaned' by one of the bungalow colony ladies, whose husband is my husband's good friend - and who was my only 'familiar' company in the entire place. She also watched Dovi once or twice or sent over her daughters to stay with Dovi while I went to pack up supper in the dining room on my own.

My relationship with Dovi definitely moved up a few notches, and he had a grand time. But as those three weeks grew to a close, it became increasingly clear that life with Dovi was going to get harder, not easier. Unless his hyperactivity decreased and his speech kicked in, it was going to get more difficult to handle him on my own. I needed as much help as I could get. And I swore that I would never, ever go away to the country again with Dovi without securing help beforehand. It is simply impossible for one person to be in charge of him all day. His Res Hab girls and therapists have him for 2 or 3 hours at most; after that, his caregiver is exhausted and needs to recharge. Being his sole caregiver for five days a week from morning to night was something I could never do again. It was a realization I had to come to in order to continue being a sane, functional human being.


Forgive me for doing this, but from this point on, I will be posting the Donate button in every post. Please, if you can, make a small donation to Dovi's Educational Fund. At this point we are barely at the quarter mark for his lawyer's retainer - nevermind the actual costs of his tuition. We need tens of thousands of dollars!!!

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