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Saturday, July 13, 2013

Respite Day

Janey went today to a respite program from 10-4, during which time they took the kids to the Children's Museum.  I was very, very nervous about sending Janey, but it appears the day went well.  I talked to Janey a lot about where she was going, and we had visited the respite house recently, so I think she did remember.  She woke up in a great mood, and was eager to go, and looked very excited when we got there.  We stayed about 20 minutes, to make sure she was settled and to talk to a few people there about her being a runner, and the arm biting.  Then we kissed her goodbye and took off.  When we picked her up at 4, she was still looking super happy, and we were told she had a great day, and only got upset and arm biting once in the van, and they put on a video and she was happy again.  She wouldn't eat her lunch, but she never eats much except at home.  So, overall I'd say the day was a success!

The respite house has Saturday programs 3 out of the 4 Saturdays in each month, but a lot of them are not ones I'd send Janey to, because I don't think she'd get much out of them or I don't feel comfortable with them.  For example, next week they are going to a water park.  I can't quite picture Janey at a water park---the risks if she ran off are just too much, and I am not a fan of water parks in general.  The chlorine in the water can be a huge trigger for asthma.  Janey doesn't have asthma, but Freddy does, and his worst attack was after a day at a water park.  He was in the hospital for 3 days.  I decided after that we won't be water parking again!  There's a vacation week camp too, for when summertime school ends, but a few of those days are boat tours, another thing I'm not sure I'm ready for Janey to do without me!  But I'll be thrilled if she can go to the program once every few months or so.  That's probably all we can really afford, and it will give her a fun day and us a little rest.

It was strange here without her!  We all realized she's the center of our lives.  It felt kind of empty without her, although I think we could get used to just a tiny bit more time with just the boys now and then!  But today, the boys had a big fight, which is not really like them, and we all were a little cranky.  And I got sick---a sudden weird sickness with a high fever.  The fever is less now, but it was bizarre. So I spend most of the day, and the evening, in bed.  I've read other people say that once they finally got a little break from a child with special needs, they really missed the child, and even though Janey was gone a shorter time than a school day, having the rest of us home made it feel odd.  Maybe part of that is we try very hard not to sound upset or even impassioned around Janey, as she gets upset if she thinks we are upset, even if we are not, just loud and emphatic!  So without her here, we let out some long held in tension.

I'm glad I tried the respite.  I know I'll do it again.  I have a few concerns, such as the staff seeming a little disorganized (although very sweet and good with the kids) and not being sure who was in charge, and there being no sign-in sheet, but the most important thing about respite is that they keep Janey safe and happy, and that seemed to be the case!

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