Reflections on Janey's week at camp

We picked up Janey early this morning from her week at Camp Fatima.  What an amazing place it is!  We were truly blown away by the kindness and generosity of the so many people that make their Exceptional Citizens Week possible.  Her counselor, Dawn, teaches autistic kids during the school year, and then takes a whole week of her year to be with an autistic child at camp, and she is just one of the hundreds of volunteers that make the camp possible.  Janey went on boat rides, rode horses, sang in the church choir, went to a dance, shot a rifle, did arts and crafts, had meals served in the dining hall by teenage boy waiters, slept in a cabin, went to a campfire, had her nails done in the camp salon, hung out and ran around with her camp friends---she had a true week of camp.  And we had a week of true respite.

We got great reports from camp.  Janey was very happy there.  Her counselor figured out she does have a tough time every day from about 3-5 pm.  This almost made me feel good to hear, as that is her tough time at home too, and it made me feel less like I'm doing something wrong during that time and more like that's just Janey.  But the rest of the time, she was nearly all happy.  I had guessed she might be.  Janey is a natural camp-goer.  She is in so many ways the opposite of me as a child.  I was a natural get-homesick-and-go-home-early camper.  Camp was everything I didn't like then and still don't like now---sports, lots of togetherness, not a lot of downtime, a place for extroverts.  Janey is not like me.  She loves to be active and busy.  She is not shy or introverted.  That was one big reflection I had on this week.  A lot of Janey isn't her autism.  It's just her, who she is and I think who she would be with the autism or not.  I need to work harder to give her the kind of recreation and activities she craves.

At home, we got a very lot of sleep and rest, and were able to eat out a lot, go on some day trips and watch a ton of "Dexter" on TV---all things we don't do with Janey home. We had a lot of fun.  But I missed Janey very much---to be completely honest, much more than I expected to.  I knew I would miss her, but because we have never, ever before had a week of respite, to say nothing of really a full day of respite, I thought the missing would be overwhelmed by the freedom.  I loved the freedom, but I missed her so, so much.  Somehow, without her, we weren't quite operating at our best as a family.  We argued more.  The boys fought more. We got irritated at smaller things---bad drivers, bad pizza, forgotten keys.
We had a great time, but it somehow felt like a great time with a piece missing.

We eased Janey back into our regular life by stopping on the way home at a friend's camp (camp in the Maine meaning, a summer house) on a lake.  We had a great boat ride and Janey had time to run around in the beautiful yard.  Then the long drive home, and re-entry.  That was a little tough.  Janey ran through all the things she most likes to do at home quickly---some iPad time, a video, asking Daddy to cook things, ordering us to snuggle her on the bed, some YouTube---and then it seemed to hit her and she melted down some.  She was tired and I am sure she was missing camp.

What did I learn from this week?  I learned Janey can thrive away from me.  I learned I need to find a way to get more sleep, because sleeping through the night felt amazing.  I learned I have to find more ways for Janey to be active physically.  I learned that there are many incredible people out there who give of their own time for families like ours.  I learned, as I keep learning in life, that our children are their own people.  They like different things than we do.  They truly do deserve, and enjoy, a life that is at times apart from us.  But I also learned that our family doesn't feel complete without Janey.  She is part of us.  At times, when Janey is very tough, it has felt like she has somehow taken away the family life we were supposed to have, but I know now that our family without her isn't our family.  It's a different family.  We need Janey, maybe even more than she needs us.

Janey being the bright spot

The last four days or so have been tough in a lot of ways.  Some weird thing is going on with the power in our section of the city, resulting in the last 3 nights out of 4 being completely without power, in the midst of a very hot spell.  It felt extra hot for me, as I was quite sick, with a high fever over the weekend and a throat that was bad enough so when I finally went to the doctor yesterday, her first words on looking at it were "Yikes!  Wow!"  In the midst of all this, somehow our washing machine stopped draining, resulting in a buildup of laundry to the sky, with no end in sight.  Yesterday, after a day when the power was on and off, and kept browning out, and finally went off once again, and then back on, and then they called to say it would be off all night, tiredness from sickness and sleepless nights caught up with me and I got into a weepy spell, just unable to snap out of it, despite firmly telling myself that all these were minor, first world type problems.

But what was the sunshine through all this?  My sweet Janey!  I can't think of four days of sweeter, easier behavior from her!  She has been, without a single qualification, a delight.  A smile has barely left her face, she's been saying cute things and showing a lot of understanding, she's gone along happily with anyplace we needed to go or anything we needed to do, she slept all night in the hot without a problem---she's been a joy.

Of course, with my overthinking mind, I'm trying to make a connection or a conclusion here.  One thought is that for years now, Janey and her issues have been our focus.  It makes me think to have a spell where other things were higher on my mind.  And I wonder if that has actually helped her some.  Not that we have been ignoring her---we can't.  But we haven't had the laser focus on her I think we often do.  This has coincided with her, for the first time, showing a little interest in being alone now and then.  She can't be totally alone, of course, but if we can see her and check on her every minute, she can be in the next room.  Lately she is often going into William's room when he isn't there and playing with the electronic keyboard he has set up, or sometimes just lying down on his bed and resting.  It feels like she is wanting that down time, away from us all.  Although I think a lot of people have the image of autistic kids wanting to be alone a lot, that has not been Janey.  She's an extrovert, like her brothers and father, and she likes to be around us, whether happy or sad, or she has up to this point.  It's made me happy to see a little of myself in her, as I am the queen of liking to be alone.  Maybe she is starting to need some space, mental and physical.

Things feel better today. I feel better, and the power is back on, hopefully to stay.  And hopefully, Janey will stay happy.  For one of the first times, I feel like she helped me get through some bad days, just by being her sweet self.  Thank you, Janey!