February 19, 2020

26 Nights Off

For the past two weeks, our household has been strangely different – no puzzle pieces or Lego toys strewn around on the floor and poking up from the sofa, no strains of the “Macarena” and “Theme from Rango” can be heard coming from the Ipod, and the only movies playing on the DVD are art house movies from Netflix.

Thanks to the Tikvah program at Camp Ramah (California) and our wonderful 1:1 aide, Danny, 16,  is mid-way through Session I in Ojai, the longest time he will have ever been away from home. A few years ago, we started Danny off with 2 weeks away, and have gradually increased his time at camp, until now he will be gone a grand total of 26 nights (but who’s counting?).

When Danny was little, the most we could hope for was one or two nights away—his complicated medication regime, his craving for routine, and his inability to communicate very much except for an emphatic “NO” and whining on demand. Family members have also given us some nights off which we appreciate, but the logistics are complicated.

We first got an entire weekend away when Danny was around 5 through a program at United Cerebral Palsy (UCP) called “respitality” in which local hotels provide two free nights of stay for the parents, and UCP provided a qualified respite worker from one of their many group homes to take care of Danny, all for free.

The respite worker was very competent and a warm, loving person, who unfortunately, couldn’t really get the hang of kashrut and according to our daughter, fed Danny cheese pizza with a kosher beef hot dog. Plus the respite worker let our daughter stay up way past her bedtime and watch “Jerry Springer” on TV. Oh well. Everyone survived.

But camp, both general and Jewish seemed like the better plan for some quality respite time.  Danny first went to a summer camp sponsored by Ability First , and then JCA Shalom and now the Ramah special needs Tikvah program, where his favorite day of the week is Shabbat.

In previous years at camp, we were contacted often about various issues, but this year seems to be going smoothly after an initial bout of homesickness at night. We view on-line photos of him enjoying himself in his favorite place in camp—the pool—and read the blog written by the counselors, so we know all is fine, but it is both liberating and disconcerting not to know what’s happening with him every day.

We’ve decided that “no news is good news” and linger a little longer in the newly-installed hammock, savoring the free time and looking forward to his return in mid-July. Until then, there’s no reason to make the time go any faster.

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