Summer memories

Today was the day I think of as the first day of summer---the first day of the first full week without school.  I will be totally honest and say it's a day I dread.  I've never, ever liked summer much.  I don't like the heat or the lack of routine.  With Janey, a summer day can feel endless.  I am very grateful for summer school, which starts in two weeks.  But today---it was a long day.  Janey screamed a lot, cried a lot, just was very out of sorts.  I felt out of ideas for the whole summer by nine in the morning.

Tonight, looking back on today, I realized something interesting.  Janey knew what the day was.  She knew it was the start of summer.  I realized that because of what she asked for.  First thing in the morning, she wanted to walk to the "ice cream store".  That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat.  We did that.  A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?"  She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine.  Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?"  Again, something we did very often last summer---walked to the train station to meet Tony as he came home.  We haven't done it since last summer.  Lastly, she then asked "Get Chinese rice?'  Yet another thing from last summer---having Tony bring home Chinese food often.

I don't know how it made me feel that Janey remembered all that.  It made me feel sort of guilty, that her summer memories are of such mundane things.  It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken.  It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.

I wish I could do more with Janey in the summer.  But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger.  There are splash parks around, but they are filled with toddlers and preschoolers.  Janey is the size of an adult, and unpredictable around younger kids.  There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school.  Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't.  The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly.  So, much of the time, we stay home.

With that being said, I am hugely looking forward to later this week.  We are taking a trip!  Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on)  I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools.  We are going to keep everything as low key as possible.  I still am not sure how it will go with Janey, but I hope well.  She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!)  So wish us luck in making some new summer memories for Janey.  I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!

Summertime School and not "using your words"

I've always disliked the phrase that people often say to kids "Use your words!"  I know the intent---to remind kids that when they are angry, they need to express verbally what's bothering them---but long before I had Janey, I felt that it was a kind of accusatory way to talk to kids.  When they are upset, it might not be possible for even the most verbal kid to think of how to phrase what is upsetting them, and I think a kinder approach would just be to hug them or be sympathetic.  But now, with Janey, I hate the phrase, because Janey CAN'T use her words.  And it's not because she doesn't have any words.  She has lots of words, but she can't use them, mostly.  She can recite them, she can plug them into set phrases, but she can't use them, almost ever, to tell me what's wrong or why she is sad.

That's a big part of why things like summer school are so nervewracking for me.  Janey started summertime school today (officially, it's Extended School Year, or ESY, but for Janey, I call it summertime school).  I did better than other years.  I didn't lie awake for hours last night worrying about today.  I know enough people that will be there to know at least someone will have an eye on her, and I was thrilled today to find Mr. Ken, Janey's ABA specialist, waiting there for us.  That made it like handing her off to a dear friend.  I didn't know her teacher, but met her today, after no-one knowing who she was for a good long time.  Everyone meets outside, and it's about how you'd picture a very lot of autistic kids being placed into the classes on the lists.  A lot of the kids are not eager to say their names, or can't.  But I was impressed at how relatively calm everything felt.  I left without extreme nervousness.  I know Ken will tell me how it went, honestly, and I know that the other 5 or 6 people I saw there today that know Janey (some of which I don't know, they just know Janey from other years) will be seeing how she's doing.  But Janey can't tell me how she felt about school.  If something scared her, big or little, she won't tell me.  Maybe there are noises in the school she doesn't like, or they have a routine that bothers her, or another kid might hit her.  None of those would be huge things, but without being able to hear about them and talk to Janey about them, they might very much be impacting how she is feeling about school, without me being able to help.

As we parked this morning to walk in, for one of the first times ever, Janey tried to fight me on walking to the school.  She tried to go the other direction, to a playground she could see down the street, one she liked last year, with a water sprayer.  Or I assume that is what she was resisting.  It could also be that she just didn't remember what summer school was, and was upset we weren't at her regular school (summer school is in a totally different place).  She tried again to pull away from me when we walked past a door that I think they use to go to swimming, which she also loved.  It took all I had to keep her walking in the right direction, which was scary.  She gets stronger all the time.  I had to use my patter---my non-stop talking routine to keep her distracted and moving "Hey, let's head to school!  I think we might see Mr. Ken there!  We might see some of your friends there!  I wonder what they will have for breakfast?  I think you'll have a great time! Let's keep walking!"  It worked, for now.  There will come a day, I am sure, when I won't be able to get Janey to go where I want her to go, physically.  That day scares me to think about.

And so, she's off.  She's off for the day, and I'm home, and I will never know exactly what she did all day.  I might get notes, I might hear parts of it, but with a child that can't use their words, so much of what they do out of your sight is a mystery.  I just have to hope, to fervently hope, that she is happy and cared for and well.