There is an old Yiddish expression, "דער אייבערשטער גרייט אן די רפואה פאר די מכה" - G-d prepares the remedy before He sends the malady. In April of 2010, just before Dovi was diagnosed with autism, one of the biggest special needs organizations in New York established a Respite House. I read the announcement and saw the ad and thought that this was a wonderful thing for special needs families who need respite from the burden of caring for their disabled children. Little did I dream that I would one day be among those grateful parents.
When I went to the first support event, one of the other autism moms mentioned the Respite House to me. I thought it was an incredible entity but did not think it was something I needed; Dovi was a handful, but I wasn't ready to send him away for weekends. But a scant few weeks later my baby sister got engaged, with the wedding slated for February. I knew I had to find somewhere for Dovi to stay for the Shabbos after the wedding, since we would be invited to eat all 3 Shabbos meals and he obviously couldn't come with us as he wouldn't behave. So after Succos was over and life settled down a bit, I began the process of applying for the Respite House.
I called the Respite House and left two messages but got no answer. In desperation I called the cell phone of the director, Cheryl. We had a nice, long conversation about Dovi. I even sent her the video documentary I had put together of his life from the day he was born up til his 3rd birthday - every word he had ever said, and the subsequent loss of skills. At first she was confused how I considered him autistic, until I realized she hadn't seen part 2! She sent me copious paperwork to fill out. As part of the application Dovi had to have a PPD shot, get his immunizations up to speed, and a well visit. That visit to the pediatrician was a nightmare. Drawing blood for Dovi involved 3 people holding him down. I also asked for a PANDAS blood test, which took the manpower of 3 people to get done. Dovi ran out to the waiting room screaming and bleeding. It was an absolute nightmare. The doctor also had to fill out a whole list of OTC medicines that he was permitting Dovi to be given. In short order I sent in the paperwork, and put it out of my head.
Shortly after all the paperwork was filed and Dovi was successfully approved for the Respite House, Cheryl asked that Dovi come on a Friday afternoon to get acquainted with the place and the counselors. My husband took him for a visit and Dovi loved it so much he wouldn't leave. The Respite House is truly incredible. Set in a typical detached one-family (or maybe it's a two-family?) home in the heart of Brooklyn, it's completely set up to accommodate every type of disability (I think they draw the line at oxygen-dependency or something that needs constant nursing care). The ground floor has a large living room with couches, a kitchen with a double locked door so that kids like Dovi don't go in to ransack, a playroom and dining room (complete with high chairs and booster chairs) and even a backyard where they set up baby pools in the summer. There are 2 bedrooms downstairs and five more upstairs, and an amazing sensory playroom in the basement complete with a ball pit, fiber optic light show, bubble machine, and lots of toys. They have crib with tents, regular beds and bunkbeds, camping tents for escapees like Dovi - everything that a place like this needs. It's incredible. They take up to 8 children at a time, and each child is always with a counselor, plus a few backup counselors so each counselor can take a break during the day as well.
Dovi could not get enough of the sensory playroom, of course. He got briefly acquainted with Cheryl and with the head counselor, a living doll named Amy, and even Chaim enjoyed himself in the playroom, of course.
(Please excuse this sorry excuse of a picture; it's taken with my Bloggie Touch off my regular camera; it would take too long to open my other laptop, put in the video file, make a screencap etc...)
Nary a week had passed from Dovi's test visit to the Respite House when Cheryl asked me when I would send him for a Shabbos. I was surprised; I told her we were scheduled for February 24th - why was she asking? She wondered why I wouldn't send him just like that for a weekend, just to give my family a break. That hadn't occurred to me. Although Dovi was extremely difficult to handle on Shabbos, I couldn't bear the thought of sending my baby away.
But after a disastrous Chanukah party where I was reduced to tears, I realized that - whom was I kidding? I needed a break, big time. And Dovi was approved and welcome to go the Respite House - so what was I waiting for? I booked January 28 and sat and looked forward to that day.
In the end, there was a last-minute cancellation and Cheryl offered me January 13 instead, 2 weeks earlier. And so on one fine Friday afternoon I kissed up Dovi with all my might and sent him off with my husband and Chaim to the Respite House. Dovi ran in very happily, and my husband later reported that Chaim had held court in front of all the counselors, telling them that Dovi made big messes and he couldn't be left alone for one second. They all chuckled appreciatively.
That first Shabbos of Dovi being away was difficult. I tiptoed around his empty room, feeling a hole in my heart. I couldn't believe I had sent my baby away for the weekend. Saddest of all was seeing how relaxed my husband and Chaim were all Shabbos. The pain resurfaced full force as I contemplated what life could have been like had Dovi not been the hyperactive, destructive child he is. I relaxed and slept and didn't have to worry about the house being upended and destroyed. On Saturday night I quickly called to hear how he'd done and got a glowing report of how much fun he'd had and of course, what a handful he was....
Since that inaugural Shabbos, Dovi has been at the Respite House many times, on average of once a month. Every time he goes, our family experience tremendous relief; Chaim gets his full attention, we are actually able to sit and eat a Shabbos meal without chasing after Dovi and fixing whatever he's upending at the moment, and I can sleep in in the morning. I also struggle every single Shabbos with the sadness of how life could have been without Dovi's autism when I see how normal and relaxed everyone is when he's not around. It's not a pleasant round of emotions to deal with. And I cry every Friday afternoon when he leaves. I miss him less than I used to in the beginning, having gotten used to his absence and looking forward to the recharge I get on Shabbos. Especially now with Estelle having stopped to take him on Shabbos afternoons, it has become more necessary to take Dovi to the Respite House every month. In addition, we have recently started making use of another respite provider, a darling woman who takes all kinds of disabled children for Shabbos and weekdays - and she actually found Dovi really active and challenging!
Dovi loves going to the Respite House. When he walks in there, he doesn't even look back. He makes a beeline straight for the ball pit - where he can stay for hours. The counselors adore him; even though he is quite the handful, they are young and energetic and love playing with cute little ones.
As with everything Dovi-related, it's not always smooth sailing. There's always updated paperwork to fill out, often last-minute phone calls about certain papers missing and frantic phone calls to the pediatrician. There was the weekend when Dovi finger painted the crib tent with the contents of his diaper (and we had to start sending him with one-piece pj's with the zipper turned to the back). There was also the spate of several weeks this winter when there were no reservations available for Dovi and we went through an extremely hard time as a result. But by and large our experience with the Respite House has been stellar. We all wait with anticipation for Dovi's monthly visits, and he loves going, so I never feel guilty.
That Shabbos on January 13 2012 when Dovi went for the first time would prove to be the last day in 2 very long weeks that I would actually catch my breath. It was definitely the "refuah before the makkah", a chance to recuperate and rejuvenate from the previous few months, as I would be facing the most difficult, challenging, and draining experiences of my life - experiences that would leave me stronger and better, and the lowest point of our revolving wheel to make way for the wheel to turn back upwards and improve our shaky mazel.
To be continued...