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Saturday, September 14, 2013

A tough decision

The Saturday respite for Janey has been a nice break off and on over the last few months.  I've been unsure about a few aspects of it, but Janey seemed to be enjoying it, and we certainly very much needed a little respite.  That's why it was very tough today deciding to not send her, after driving to the respite house, and deciding we mostly likely won't be sending her any more.

I don't want, in any way at all, to put down the respite.  They seem like great people, providing a service that is hugely valuable to many parents.  I am so glad they exist.  But right in their literature, it does say they can't guarantee a ratio of caregiver to child more than 3:1, although they said it's often 2:1.  In reality, Janey needs one to one care, or a environment like school where there are many people looking out for her.  She is not able to keep herself safe, she is prone to running away at times and she needs help with most all aspects of daily life.  The literature also said they can't serve kids with extreme behavioral problems or self-injurious behavior.  Janey at times has been known to have both.

This morning, when we got there, there were around 6-7 kids already there, and one woman as a supervisor for everyone. She was also checking people in.  Tony and I of course didn't leave Janey right then.  We didn't talk to each other, but we both were thinking that we needed to wait until more staff showed up (we were right on time, not early).  We waited about 20 minutes, and one more staff person did show up, but so did about 6 more kids.  Tony and I spoke briefly and decided we just couldn't leave Janey.  They were planning a trip to see Disney on Ice, and I couldn't really picture it working out for so few people to be watching that many high needs kids.  As we were leaving, one more person showed up, and when I told the woman checking people in that we were leaving, she said more people would be there.  So I am sure they would have their stated ratio before they left.  And truthfully, although I don't know the diagnosis of the other kids there, I think most of them would be fine with that ratio.  Several were in wheelchairs, several other pretty high-functioning seeming kids with Down Syndrome, and the other kids seemed fairly docile.  But Janey was already running around.  I couldn't quite picture what would happen if she ran off in public, and I couldn't feel sure that anyone would always have an eye on her, as is necessary.

The woman in charge was a little defensive when I told her we were leaving as we were concerned about the level of staffing for Janey.  I tried hard to make the point that I wasn't saying they were doing anything wrong, and that I wanted to make their day easier, as she seemed stressed.  I am going to write her a letter to further explain what I meant, and to thank her for the time Janey did spend there.  I know they rely on volunteers, and I know people run late.  The thing is with Janey---every second is important to have her watched.  The fact more people were coming later wouldn't help her if she decided to wander off when they weren't there, or if she melted down badly and started hurting herself.  The program wasn't right for her, and that is not the program's fault, or Janey's fault either.

I had some feelings from the start that the staffing levels were not high enough for Janey.  But I needed respite, beyond badly.  I decided to try to trust it would work.  And it might have still worked.  But today, leaving, I knew in my heart I was doing the right thing.  I am prone to second-guessing, to thinking I am wrong if anyone in the world disagrees with me, but today, I knew, and Tony knew, that we couldn't leave her.  And I think Janey is relieved.  We'll see if she cries tonight, like she did last week after going, but for now anyway, she had been extremely cheerful and happy.  I have also been happy, in thinking that NEVER ONCE did I feel even a second of worry when leaving Janey at school that she would not be well enough supervised.  I haven't appreciated that enough over the years!

I will still look for respite for Janey.  We still need it.  And I hope it's out there, someplace.  But for now, we have school, and we will make the weekends as fun for her and for us as we can.

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