The summer starts now

When the boys were little, as we pulled into the driveway coming home from the last day of school, I'd always say "The summer starts...NOW!"  I'll say that to Janey as she gets off the bus this afternoon.  Her summer is starting.

Marshall Point Light, in the town I grew up in
in Maine.  Even with surroundings like this,
I still hated summer and I still do.

It's going to be a different summer than usual.  I'm not sending her to summer school this one year.  Last year, summer school was basically a disaster.  Her teacher was not a good match for Janey.  The bus was horrible, showing up whenever it felt like it, leaving us sometimes waiting outside in the hot sun for long, long periods of time.  The program itself seemed to consist of far too many kids crowded in one indoor room, being taught academics by a too small staff.  It infuriates me that in a city with hundreds of summer programs of all types, taking advantage of all Boston has to offer, that the best they can do for those with some of the greatest needs is to stuff them in a room.  I'll go back to trying summer school next year, as Janey will be in a different program then, the pre-high school program, but this summer, we're taking a break.

Of course, I'm a little panicked about how summer is going to go.  In the best of times, summer is my least favorite season.  I don't like heat at all, I don't like the lack of routine, I don't like much of anything about it.

I had all kinds of notions about setting up very detailed schedules to get through each day, but then I did a reality check and knew that would not work.  So I am trying something simpler.  Each day, in the morning, we will go someplace.  It doesn't matter where really.  It might be out to a fast food breakfast, or for a walk in a park, or to some store like Target, or to a pond to swim.  Once a week, I'm going to aim to take the train into the city, just to hang out.  Freddy is home this summer and is wonderfully willing to help out, or I would not really be able to attempt many of those things, but with his help, I think it will work.

I'm also going to pick one academic area a day to work on a bit with Janey.  I'm talking very basic stuff here, like picking a letter and working on learning to identify it, or talking with her about concepts like bigger or smaller, more or less, over or under, things like that.  I'll decide in the morning what that day's target will be, and then I can work it into the day---things like saying "Look, that flower is bigger than the other one!" or "I see a B on that sign!"

Aside from those two goals, I'm going to allow myself not to feel guilty about what gets us through the day.  If we get out in the morning, I'll relax if the afternoons are all videos and sitting around.  My energy level by afternoon is usually extremely low.  I can do things in the mornings, but afternoons---not so much.  Often, I get upset with myself over this, but I'm trying harder to be realistic.  Quite frankly, Janey probably wouldn't care if all day were just hanging out, as long as we took her now and then to the ice cream store and as long as Daddy gave her a ride at night, but I don't want to go that route.  So---I'll compromise with myself.

I'm still dreading the summer.  But that's not a new thing.  I can't think of a summer ever I didn't dread.  I'll be happy when it's September again.  Janey will have the same teachers next year as she did this year, and I dare say it was her best school year ever this year.  I can look toward that, and I think we'll make it through the next two and a half months.  Hopefully.

Hope and Holiday Blues

First the hope.  Yesterday, we visited a respite house a few towns over.  Janey's first grade teacher had told us about it, and I did an online application and got an email inviting us to visit.  It was wonderful.  The house is on a college campus, and is all set up for being a place for children and adults with disabilities to spend time and have fun.  There is a great rec area, a fantastic kitchen and a floor full of dream bedrooms, for overnights they sometimes have, and a lot more.  And best of all, they actually have openings!  Janey started the tour by freaking out of her mind, screaming hysterically.  So they got to see that.  She calmed down quite quickly once she saw some of the great things they had there, and tried every bed in every bedroom and by the end was hugging the woman who works there who gave us the tour.  We signed her up for two Saturdays this month.  One will be a trip to the Children's Museum, and another to a local beach.  We are holding our breaths---it almost seems too good to be true.  It's exactly what I had wanted, and even wrote about, and it actually exists!  There are scholarships available, but if we can't get one, with a little belt tightening we can manage---it's not crazily priced.  There are 6 overnights a year for girls, and we might even try one of those next month, and there are vacation week camps!  I keep thinking something will go wrong, or Janey will be too much for them to handle, or SOMETHING---it really feels like a dream.  I'll write more about it after the 12th, when Janey goes for the first time.

The holiday blues---that was today.  It's the 4th.  Tony and I felt a little down all day, and talked about it tonight.  Lots of reasons, but a big one is the isolation that having a child with a disability brings, especially on holidays.  Gradually, we have stopped going almost anywhere.  When we used to go sometimes to cookouts or the like with family and friends, it was almost always a disaster.  Janey would get hysterical, and we couldn't stay long.  Most all of our friends and family now also have littler kids around---grandchildren or kids of their own.  We can never be sure how Janey will act, and I think there is fear on both sides about that.  We don't reach out to go places, and we don't get invited, probably because people know we wouldn't go anyway.  Even if somehow Janey acts perfectly, we are still on edge.  We can't ever relax.  Someone has to be following Janey at all times, within an arm's reach, especially at other people's houses or public places. And so we stay here.  And usually, we are okay with that.  We aren't hugely social people.  But on holidays, sometimes it feels a little sad.

We were planning a family trip to a beach tomorrow, but talking about it tonight, we decided to make it just Tony and the boys.  The beach is quite a drive, and once there, it's not like we can all have fun as a family.  I want the boys to have relaxed, fun, happy times with their father (and with me) and if that means us not all being together, it's better than just skipping the outings.

The two themes tie together there.  If the respite works out, and Janey can have fun, and be a place where there is paid staff and volunteers that are there just to take care of her and the other kids, then we can have some time with just the boys.  We can relax a little, but it's bittersweet.  It's not a full family without Janey.  I had a moment just before going into the respite house of an overwhelming feeling of sadness.  I was so happy to be getting a chance to see about the respite we've craved, but it felt sort of...I don't know the word. They start taking kids at 8, and I guess that's because that's an age where you know it's not something the child is going to grow out of.  This is our life, this is Janey's life.  We are at a point where we need more help than just home and school can provide.  And in a way, that breaks my heart, although I am so happy there are wonderful people who will be able to give us that help, and give Janey a great time at the same time.  But it's not normal family life.  Or maybe it is---"regular" kids go to activities and sleepovers.  Janey will be able to also---just with a little more support.  Maybe I think too much about things.  Maybe I am overthinking this.

Either way, Happy 4th of July to all my USA readers, and happy start of summer to everyone!