Summer Report

Roll out those lazy, hazy, crazy days of summer.  I guess.  I am not a summer person, as people who have read this blog probably know, but this summer hasn't been bad, as summers go.  There was the non-sleep period, which I will never, ever say is over, because I fear a jinx more than anything, but, well, it's better.  Janey has still been often getting up extremely early, but lately, she is into Netflix on her iPad, and watching longer movies, even ones she's never watched before, and it's allowing us to drowse a bit while she's awake.

The big difference this summer, of course, has been having Tony home.  It's wonderful.  I said just before the summer started that it was the first summer I haven't dreaded, and I was right not to.  Parenting Janey is really a two person job, and Tony and I are both more rested, even with the non-sleeping issues, than we were in past summers.  

Another very nice thing has been summer school.  Two years ago, I took Janey out of summer school in the middle.  She was miserably unhappy.  It was the only real time I'd ever seen her crying because she didn't want to get on the bus, and she would come home crying, and I was getting emails from the teacher a lot of the type that say "Do you have any ideas about keeping Janey happy?  Is there something different at home?" to which I always have an urge to reply something like "Oh, yeah, I forgot to mention that we moved because the old house exploded---it just slipped my mind!"  I'm just being sarcastic here, but I do tell teachers if something big is happening at home, and to be fair, I don't get that question often.  So we cut our losses that year, and I was gun-shy last year and decided to just keep Janey home from summer school.  But this year, I thought we'd give it a try again, and she's been VERY happy there.  Her (different than two summers ago) teacher seems great and he stays in touch about positive and less positive things, and he sent me a happy picture of her from Friday, which is something I very much love to get.

Janey is continuing to seem more like a teenager all the time.  Her most used phrase with me is "Want to go away?"  She says this any time I'm in her space, and her space is often much of the house.  I take it with a laugh, though.  It's cool to see her wanting space, and I want to give her as much as I can.  It makes me sad, a lot of times, how little true independence her life is going to have, and I feel like it's important to give her any agency I can about how she spends her time.  It can sometimes get a little severe, though, like when her brother Freddy came home from work and said hi to her, and she replied "NO! Want to go away?" and pushed him.  But I remind myself her vocabulary is limited, and she's getting her point across.

One interesting development is how Janey has been using the TouchChat AAC app on her iPad.  I started with it a couple years ago with great hopes.  Janey has never really used it to talk, though.  She likes it, and she says, many hundreds of times "I don't want to listen to CD" which might sound like it's saying something, but it's what you get if you hit the exact middle of each screen in a row.  I think she likes the way it makes a sentence, and she doesn't ever listen to CDs anyway.  But for a while, when Janey is very upset, I have been pulling up the feelings screen on the app and asking her to tell me how she's feeling.  She usually picks happy first, even when she's very obviously not happy, but then she picks something else, sad or frustrated or angry or tired.  And she calms down.  Like a miracle sometimes, she calms down.  It's like being able to label the feeling helps tremendously.  Today, for the first time ever, when she was upset, she went to the iPad and went to that screen herself, and 

calmed herself down.  I was very, very happy.  I wish she'd use the app more, though.  I use it often around her, and she easily remembers how to get to various screens, and it's always available for her, but she has made plain that's as far as she wants to go with it for now.  And if I pushed her more, I'm 

quite sure she wouldn't be as eager to use it in the limited way she does as she is now---that's my Janey.

Of course, what comes next is high school, and I am nervous day and night about that.  I feel confident we picked the right program for Janey, and I am very happy she can go where we wanted her to go.  But still...it's a new school, and it's a LONG bus ride.  It's on the opposite side of Boston, and if you know Boston traffic, you know it might well take an hour for her to get to school and an hour to get home, on tougher days, and some days, probably more than that.  She loves the bus and she loves rides, or we wouldn't even consider that, but I worry about her needing to use the bathroom while she's on the bus, I worry how she will react if the traffic completely stops the bus for long periods, I worry about other kids on the bus...I worry about everything.  I keep telling myself to wait and see how things go before all the worrying, but that's not my way of doing things, usually.

I was helped more than you know during Janey's no sleep nights by posting on the Facebook companion page to this blog, and reaching out to the other mothers in no sleep land, the ones, as Claire so incredibly well put it, awake at silly o'clock, as those hours in the middle of the night should be officially named.  Thank you, as always, for getting it, all of you wonderful people.  I hope you are having summers that are better than you'd worried they might be!

October is the cruelest month

A few years ago, when Janey wound up at in a psychiatric hospital, quite a few people told us that October is the month many crises such as the one she was in then start.  They think it's a combination of things---the newness of the school year wearing off and reality hitting, the lessening light, the change in the weather, the lack of big holidays---but whatever it is, a month you would not expect is the month that's hardest for kids prone to being upset.

This October has been tough so far here.  This weekend and the past weekend have been pretty rough for Janey.  She isn't happy.  It's remarkable how long it's been since she's been unhappy like this.  We had a good long run of happy times---of course interrupted now and then by sad days, but it's been a long time since we had a weekend like this and last one.

This weekend, Janey has been screaming a great deal.  We can control the screaming a bit with the old reliable things---a car ride or food---but the car rides get cut short with more screaming and the food would have to be more constant than is healthy or possible to keep back the sadness and anger she seems to feel.

The most frustrating part, for us and I am very sure for her, is how hard it is for her to communicate just what is upsetting her.  Is it physical pain?  Did something upset her when she wasn't with us?  Is she worried about something?  Is she bored?  Is she annoyed with us?  Does she miss her brothers?

We are left, so often, playing a guessing game with her as to what is wrong.  When she is screaming or crying, her already very limited speech becomes even more so.  When we try to guess, often she falls back on her default response---"YES!"  So we say "Do you want a different TV show?" and she screams "YES" when that isn't what she means at all, and we change the show, and she gets even more upset.  I feel awful for her when this happens.  I'm sure it feels like a nightmare for her, being so upset and so unable to explain why she's so upset.

We planned a trip to Maine to see my parents this weekend, especially to see my father, who is home after his awful fall and hospital and rehab stay.  But it's not possible to drive when Janey is screaming.  It's not safe, for her or for us.  And she just cannot be cared for by one person alone when she is in screaming crisis mode.  We tag team.  She's been up now for a long time, and Tony is getting a little hugely deserved sleep while I write this at five in the morning, stopping often to try to calm Janey's outbursts.  I feel, quite honestly, trapped and overwhelmed.

I do believe this will pass.  We've seen times like this before, and they don't last forever.  But while they do last, I want more than anything to find a way to help Janey explain what is wrong.  She is thirteen.  I am sure sometimes what is wrong is that she's bored of us, she's feeling a teenager's angst and annoyance at the world, she is frustrated with her life.  But how do you deal with that kind of feeling when communication is tough?  And I don't want to assume, to say to myself "Oh, she's a teenager" if there is something else wrong.  How do I know?

When the general public thinks of autism, I don't think they think of this.  This isn't the quirky savant, or the toddler full of unlockable, fascinating potential.  This is an amazing, beautiful, complex teenager who is not able to communicate, a person who is not a statistic, or a symbol, or a problem, or a project.  This is my Janey, and I wish so much I could help her be happier.