Thursday, November 29, 2012

The Revolving Gym and the Social Network

Time to pick up the thread of our narrative again. We left off last time with beginning our trips to Support By Design .

Those trips were not easy on me at all. Dovi's therapy schedule had to be rearranged. I had to be done with my housework by 1:30. Dovi did not behave in the car and often climbed out of his car seat. Half the time he fell asleep on the Brooklyn Bridge. I arrived home after each session exhausted and nauseous.

But the sessions themselves were amazing!!

Dovi's Occupational therapist was the darling Terry, who had way more energy than I would have expected. The gym had everything -  many different kinds of swings, a ball pit, everything an OT gym needs. Terry would get into the ball pit with Dovi and did all kind of exercises with him which he loved. She did fine motor activities with him and worked on his eye contact. Dovi loved every minute of it. But the commute wrecked me.

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If you have the time, patience and interest, here is a 4-minute compilation video I shot of Dovi and Terry living it up at the sensory gym.






In early January Dovi's other OT, Lynn, told me regretfully that she was stopping to service E.I. clients due to their drastic budget cuts and piling on of paperwork. She was joining EEC's sensory gym as an OT, where she could service clients of both E.I. and C.P.S.E., and her former E.I. clients would be getting preferential slots. I couldn't believe my ears! A local gym! EEC had an excellent occupational therapy program, but they had been full when I had tried to apply to get Dovi to go there when Lynn had first suggested that he would do well in a gym. And now since Lynn was joining, there was a new therapist available - Lynn, who already knew Dovi inside out and could start exactly where she left off, with the addition of amazing equipment available for her use.

So Dovi would end up going to EEC after all... it was truly ironic.

It was also the best thing that could have happened to us.

It was a tough decision. I would miss Terry terribly and I felt really bad to bail on Support by Design after only six weeks. I didn't even tell Terry that we were leaving until after the last session. It was a cowardly move though; she was upset that she hadn't gotten a chance to say goodbye to Dovi and I felt  bad. It was not one of my finer moments.

Taking Dovi to EEC instead of shlepping to Manhattan was a relief. I suddenly got a big chunk of my time back. Now we had two empty home OT slots to fill. Enter Alexandra, a sweet girl who worked at the special ed public school and came to our home after 3 p.m. I was amazed. She was in her early 20s and had boundless energy. She had amazing ideas and was brimming with enthusiasm. A new world of sensory therapy and sensory diets opened up to us. It was perfect.

Now, back to that amazing phone call on my very last trip to Support by Design.

In January, Dovi turned 2 1/2. We were already well acquainted with two of the three triplets ASD and SPD. Now, ADHD reared its ugly head. Dovi was coming out of the first autistic stage - the one where he was stuck in his own world and not responding to his surroundings. He was coming out of his shell - big time. He wasn't social yet in the least - I was still his 'enemy' and he barely afforded me a smile - but he was beginning to wreck the house. Food got pulverized and flung everywhere, things thrown off tables and out of drawers. He could not occupy himself and spent a lot of time crying, destroying things, and just not sure what to do with himself. He threw the grates off the stove, opened and closed the wash machine lid, raced around the house aimlessly, and behaved the way a toddler with adhd and autism does. It was beginning to wear me down. On top of running around with him to appointments and sensory gyms, scheduling my life around his therapy sessions, and making a million other arrangements for him, I also found myself trying to keep him out of trouble and occupied.

Enter my best friend Esther.

"Listen to me," she said. "I want to help you. My nieces are available to come play with Dovi once or twice a week for an hour. How would you like that?"

The honest truth? I felt... weird. Was I about to become a 'charity case', one of those families that gets visited by local girls? Wasn't having two or three therapists a day in the house enough? My house was always a mess - was this the end of my privacy forever?

Esther convinced me that her nieces did this all the time; They volunteered for Chai Lifeline and they were used to going to other people's houses and not looking around or discussing it with other people. I knew her sister well and remember babysitting for her nieces fifteen years earlier. Maybe it was time to start inviting volunteers into my life to help lighten the load a bit?

I said yes.

It was the best yes I've ever said.

Admittedly, it did feel awkward and strange at first. When Judy, age sixteen, walked into my house the first time, she didn't know what to do. I kept up an endless stream of chatter, but she barely responded. She was apparently very shy. She found Dovi lying on Chaim's bed, staring at the ceiling. He began to cry when he first saw her. She picked him up, massaged him, and walked up and down the house with him for lack of anything better to do. He slowly melted into her embrace and calmed down.

Two days later, Judy's younger sister Rebecca came and brought her friend Zeldy with her. Rebecca, age 13, was the exact opposite of her sister. She didn't stop talking for a second and asked a million questions. She didn't know the first thing about autism or Dovi and asked him if he wanted to play with her. I told her repeatedly that he didn't understand a word she said. It took her a while to 'get it'.

But a new world opened up to Dovi and to me. Judy visited once a week and Rebecca visited once a week. Slowly Judy thawed to me and Dovi began smiling at her. Rebecca's massive enthusiasm seemed to work its magic on Dovi. Within a few weeks I was shocked to see a major transformation in Dovi; he became social, interactive, and the once again happy little boy we had known. It was shocking to me; none of the work the therapists were so patiently doing with him was accomplishing what simple socialization was. It was mind-boggling. Was Dovi truly a bad candidate for ABA? Would an established Floor Time program have been more successful?

Who knows.

Judy began visiting my house on Friday nights as well, bringing along her friend and neighbor Rachel, who is Zeldy's sister.  I was able to take a nap, knowing that Dovi was being taken care of. Soon Judy gave up the Fridays and Rachel would come instead with her friend Matti. Within a month, I had a volunteer network of five different girls who took turns taking Dovi out for walks, to the park, or entertaining him in my house.

That was my entrance into the world of volunteers and the amazing network of chesed my neighborhood is known for.

Judy is getting married in a month. Rachel, Rebecca and Zeldy still take Dovi out every week. They love Dovi and Dovi loves them back. I remain forever indebted to them for breaking through the social ice that had surrounded Dovi and accomplishing what none of his highly therapists could: being his friend.

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