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.

Mining for Positives

After I wrote that title, I pictured Minecraft, a game Freddy used to be into, and how you can mine and find gems.  I pictured a gem called Positive, a sparkly and bright one, that is very hard to find, so you have to look hard for it, but it's also very useful to find.  That is how it's been looking for positives with Janey the past few days.

We were so hopeful a few weeks ago.  Janey was off all medication, and we really saw no change from when she was on it.  She was smiling a lot, and recovering slowly from her surgery and hospitalization.  But starting about a week ago, things went quite strongly downhill.  

The screaming has been the toughest thing.  Janey has always screamed off and on, but lately, it's a different kind of setup.  Things will seem calm for a few minutes, then she will ask for something she wants.  If I can't give it to her that very instant, she screams---a loud, piercing, hysterical scream.  Then she bites her arm, badly.  Then, sometimes, she tries to hit me, or anyone else who is around.  

In looking for positives, I must say these episodes are pretty quick.  They are super intense, but fast.  They start too quickly for me to start giving positive reinforcement for not getting upset---sometimes she starts screaming as soon as she asks the question, if she knows the answer is no.  And if the fits go on very long, it's been working lately to say "Can you try to calm down?" and just waiting.  She does try, and she does calm down.  For a few minutes.  Until the next fit.

The screaming has essentially trapped us in the house.  We can't take Janey anyplace at all.  Tonight, Tony tried taking her to the grocery store, someplace he's taken her for many years.  It was always a positive routine for the two of them.  However, after they had picked out just a few items, Janey did her extreme screaming and arm biting.  They had to leave.  If you are thinking "Oh, lots of kids have tantrums in stores.  You just have to wait them out!" then you have never seen Janey's screams.  They are the screams of nightmares, and the arm biting is an added touch of horror.  Every single eye in anyplace we are turns to us, and if we stay, it will only happen again a few minutes later.  

Yesterday was one of the longest days I've ever had.  Tony and both boys were at work.  Janey was not happy.  I would say she had a screaming episode about every 10 minutes, all day long.  I tried everything.  I tried reading to her, coloring with her, singing to her, giving her a shower, playing toys with her, sitting with her watching TV, cuddling her, listening to music with her---nothing pleased her.  She wanted to "Go to Maryellen's house!"  She loves Maryellen, but if we actually go there, she is happy for about 5 minutes.  And then, when we leave, on the way home, she again says "Go to Maryellen's house!"  It's just something to ask for.  It's not really what she wants.

Janey hasn't been to school for a long time, since late May.  That's probably one of her longest stretches in years without school.  Summer school starts Monday.  I am hopeful it will help, but not confident, really.

We started the medication again today.  We didn't want to, but the intensity of Janey's unhappiness told us that what we wanted wasn't really the issue here.

It is getting harder and harder lately.  I have to admit it.  I sometimes truly feel scared, and I know I feel depressed.  I do see a therapist, but I haven't been able to go since Janey got sick---there is no-one to watch her.  However, although I certainly like having someone to talk to, it isn't going to change the situation any.  I am more and more aware there is not any help but school.  It doesn't exist, not for kids like Janey.  

I will mine for positive at the end here.  I cut Janey's hair out of desperation the other day, because after the long hospital stay it was quite tangled and she wasn't happy with brushing.  I think it came out not badly for a completely non-professional haircut.  Now a quick brush is all she needs.  It's little tiny things like that that are all we can really do to make our lives easier.  So here's a picture of Janey's new 'do!

Trapped

Readers of this blog have told me that they like it that I am honest.  I do always try to be honest, but I also try to not be constantly downbeat.  I've been wanting to write today, but resisting, as I feel like I've been too negative lately.  I tried hard to wait until I felt more positive to write, or to filter out the negative and write only about the positive---how Janey went to the respite house for 6 hours on Saturday and seemed to do fairly well, how there was slightly less crying this weekend, how today she got a good report from summertime school.  However, I'm going tonight to one of my reasons I wrote about recently for blogging---to be a sort of diary, to use when I am needing to write it all out.  So here goes---

I'm feeling incredibly trapped lately.  Not trapped in the way that I want out of my life, or marriage, or any of that.  Trapped literally in the house.  This trapped feeling comes from how incredibly hard it is to take Janey anyplace, at least on my own, and how her needs keep me from getting away for any significant time.  I am feeling like the walls are closing in, and a lot of factors are working together to make it near impossible to kick that feeling.

Part of it is it being summer.  I grew up in Maine, where summer is the glory of the year.  I even then wasn't a summer person, but I spent nearly all my time outside.  I walked in the woods, swam in the ocean, read in a cluster of tall grass, went on little trips to the beach or to get ice cream (which living on a peninsula meant usually a drive to Rockland, a good half hour to get there), walked to the candy store 3 miles away---I was on the go.  That is the kind of summer I wish my kids could have.  My boys do, in the urban way.  They are very good at using public transit, and they can get wherever they want by bus and train and subway, and they do.  But Janey?  Taking her anyplace is so tough.  Today after school, I wanted so much not to just go home.  But Janey has been in screaming mode, and thinking of a place to take her was an impossible task.  Sometimes she will tolerate the grocery store, but we didn't really need groceries, and quite frankly, that wasn't what I had in mind.  I considered a park or playground.  Playgrounds just don't work, as Janey is now considerably bigger than playground age, and with her noises and lack of ability to socialize, it turns into a starefest, and Janey doesn't enjoy herself anyway---not worth it.  Boston has a lot of nice parks.  The problem there is dogs.  A nice park attracts dog walkers, and Janey is terrified of dogs.  Quite a few times, I've tried a great park near us, and wound up just dealing with a screaming Janey or a paralyzed with fear Janey.  Most of the dog owners are nice enough, but many of them also ignore the leash laws and let their dogs runs free, and if a dog runs up to Janey, despite how many times the owner might tell us that Sparky wouldn't hurt a flea---Janey doesn't understand that.  Restaurants on my own with Janey---ha.  We don't do restaurants.  Stores---almost never good. And so we came home and for the hundredth time, went into the back yard.  Where Janey does fine for a bit, sometimes half an hour, but then she screams, or decides she wants her clothes off, and that is over.

Part of it is also the social isolation that autism brings.  When the boys were little, I often got together with friends and their kids.  The kids would play, the friend and I would talk.  It was great.  But Janey has no friends like that.  And I feel like I've gone from having friends that I could spend time with to having friends that I rarely see, because both the friends and I understand that a visit with Janey involved is not a visit.  It's a shared child care time.  Janey will destroy their house, find anything non-childproofed, scream, wet on their floor, grab food---I wouldn't have me over either.  I talk to friends on the phone, but the long leisurely get-togethers---they never happen.  I miss them.

And part of it, I need to admit, is me.  I don't feel up to the challenge of taking Janey places.  I am tired all the time, from her not sleeping.  I can't run fast enough to catch her if she got away.  I have a very hard time with the stares, and the stares always happen.  It is easier, at least physically, to mostly stay home.  But mentally, it takes a toll.

This afternoon, I felt I just couldn't stay home another minute.  I begged Freddy, who wasn't working, to go with us someplace, any place.  Freddy wanted to shop for shoes.  So off we went.  As soon as we got in the store, Janey started crying and screaming.  I tried hard to ignore it.  I walked her around, had her look at mirrors, talked to her.  But the screaming got louder and louder, and it was impossible for us to shop, to say nothing of anyone else in there.  We left within 5 minutes.  In the car, I opened up to Freddy more than I usually do about how discouraged I felt.  I try not to do that with the boys, ever.  They need as close to a normal life as they can get.  But I felt bad for him, not being able to do such a basic thing, I felt bad for Janey, being so tortured by whatever demons torture her that she couldn't tolerate a normal store and I felt bad for me.  I mostly, at that moment, felt very bad for me.  Which I'm not proud of.

I long to put Janey in the car and drive---drive to some faraway place.  My fantasies don't allow me to drive away on my own.  I can't do that.  But I wish I could take Janey and escape this house, this life, even for a day or two.  I wish the autism was something I could leave at home, not for good, because Janey's autism is part of her.  But for a few days.  I wish I could have just a little, little, little vacation from the autism, for Janey and for me.