Mostly Sunny---a Janey report

Sometimes I miss writing more entries in this blog!  But other times I know I'm writing less because life with Janey is less intense than it used to be.  Still, I plan to continue this blog as long as I'm around to write it.  It's interesting and cool to think of the girls that are growing up along with Janey, ones I met through this blog when she was just three and who now are teenagers or young adults, and it's also great knowing some families with younger girls (and boys) are able to at times get a glimpse of what growing up as a family with an autistic member is like.

So, how are things with Janey?  Mostly sunny!  High school is off to a very good start overall.  We went to an open house a while back, and got time to talk a lot to Janey's teachers.  She has four teachers, with one being her homeroom teacher.  The rooms are all connected, and the kids move from class to class within the connected rooms.  Her teachers all seem incredibly good.  It's just amazing to us always what great teachers Janey has had.  It's wonderful hearing them tell stories about Janey.  You can tell they get her, and that they like her!  That means everything to me.  Lately her homeroom teacher has been sending us pictures of Janey at school along with reports.  I love seeing the pictures!  It's so cool to get to see Janey's days that way.  With the rise of smart phones and having a camera always around, I hope more teachers are sending pictures to parents, especially to parents of minimally or non-verbal kids.  A picture really is worth a thousand words.

A few weeks ago, Janey had a tough week.  She cried all day for about a week, and did the same at school.  Even coming in the middle of a long great run, it was very upsetting.  I think a lot of you can relate to how we flash back to the worst times so easily.  It's not Tony and my default thought "Oh, she's been happy for a long time and she's be happy again soon!  This is just a little glitch!"  Instead we think "Here we go.  It's going to get worse and worse and worse.  She'll probably end up back in Rhode Island (where the psychiatric hospital was that Janey spent time in when she was 10)"  I think it's a kind of PSTD.  It's very hard to take a step back and just think "Let's ride this out and see what happens".  But in this case, after the awful week, Janey suddenly became happy again.  She got off the bus one Friday afternoon and was happy, and has been happy since.  I need to try to remember that!

The other night, Janey wanted to watch a certain Angelina Ballerina.  Hulu and Netflix constantly take Angelinas off and on, and it's frustrating.  To buy an hour long episode often costs about $15---to have it permanently to watch.  Janey wanted Shining Star Trophy, which has been one of her favorites for a long time, but it wasn't available and I didn't want to spend the money.  We are being very careful with money now that Tony has retired early.  So I said no.  Janey threw a fit---screaming and crying and flinging herself around.  This was after the tough time had passed, and she was so sincere in her sadness and anger I thought to myself "What the heck?  What does she ever ask for, anyway?" and I bit the bullet and bought the show for her after having said no.

Janey at school

Later that same evening, a very interesting thing happened.  I told Janey it was bedtime.  She wasn't pleased.  Usually she'll just get up over and over if she doesn't want to sleep, but this time, she looked at me for a minute as if she was thinking something over, and then started to scream.  Somehow, I knew right away this was a different scream than I've ever heard before.  It was fake.  It had a whole different tone to it. 

To be honest, I was thrilled.  It was the first time EVER I have seen Janey consciously throw a fit when she wanted something.  Other times, she's certainly thrown a fit, but it's the much more common fit, one of not having the words to explain, one of pure unhappiness.  This wasn't that.  It was a deliberate thing.  I have no doubt about that.  I said, calmly but firmly, "Janey, it's time for bed.  Turn off the TV, put down the remote and get in bed"  And she gave me another long look, as if deciding what to do, and then did just what I asked, quite cheerfully.  You could almost see her thinking "Well, it was worth a try"

It's so cool to see that Janey is still developing, still learning, still maturing.  It takes her longer than most kids, but she does make progress in so many ways.

High school doesn't require uniforms.  When I see Janey dressed in school clothes, regular teenage girl clothes (although of course ones I pick out, but I do try to dress her in clothes her peers might wear), it sometimes takes my breath away.  It's funny---I can remember 15 so well, and having a daughter that age---it makes me think of how much she is her own person.  Like everyone else, she is different than her parents, not just because of her autism, but just because she is who she is.  I am so proud of her.  I look forward to watching her become an adult.

"Want to go away?"

Janey is 13, a teenager. Most of the time, her age doesn't make a huge difference.  She doesn't operate in most ways like a teenager, not in terms of what kind of help she needs, what kind of interests she has, what she learns in school or does outside school.  But there are parts of being a teenager that come through anyway, and it's quite something to see.

My teenager

The big one?  That she doesn't always want me around.  That shocked me when it happened.  For so many years, it wasn't just that I had to be near Janey for safety, but that she wanted me near her.  I couldn't really picture her wanting it otherwise.  It wasn't that she was particularly clingy, but just that she didn't seem to have a concept of me as someone separate from her.  I helped her do what she wanted to do.  I was just sort of part of the scenery.  But now...

This week is school vacation here.  Yesterday, we didn't have much to do.  We went to the store in the morning, we did a little time outside as it was nice out, but mainly, Janey wanted to watch videos.  And she wanted to watch them without me in the room.  The phrase I heard the most often yesterday was "Want to go away?"  Slight variations at times---"Want to go in that room?" or the non-verbal push out of the room.  I got the message.  She didn't want me there cramping her style.

It's hard for Janey, I am sure, as she isn't usually quite able to put on the shows she wants herself.  I've tried very hard to teach her to use the Amazon Fire TV remote.  That is where most of her shows are, in their interface, which is a fairly complex mix of various streaming services and also shows we have purchased for her to watch on demand.  I think Janey could learn it, though.  She uses the iPad with such ease it's amazing.  She knows how to move around programs and minimize them and start thing with gestures that I don't know at all.  But we aren't quite there yet with the TV.  So Janey needs to ask me constantly to put on the shows she wants.  We use an improvised sign language to pick episodes---I scroll and she points in the direction she wants me to scroll, and then points to herself when the episode she wants comes up.  There are pictures with episodes, but I do think there's a little reading going on too.  So even though Janey wants to be alone, she needs to come get me often to put shows on, as she likes to change shows constantly.

Yesterday she tried hard to be independent by watching VHS tapes.  She knows how to put those in and take them out, and she is remarkable at finding the one she wants from the huge box we have.  We've long ago lost all the covers, but she can tell which is which, from symbols or fonts or sometimes, it has to be, just plain reading.  However, she has not grasped rewinding.  She hates rewinding.  Most of the tapes are at the ends, because it's only if she REALLY wants a show she will tolerate me rewinding the tape.  Usually, after about 10 seconds, she stops me and hopes somehow the rewinding has happened extra fast.  But even with those challenges, I could see how happy she was puttering around finding tapes and putting them in.

Of course, even when Janey tells me to go away, I can't go far.  She needs me often to come back, and she really can't be left alone.  I go into the next room, and keep a sharp ear open.  I jump up if I sense there's anything I need to see---food being strewn around, a need for toileting help, anything like that.  But I'm out of direct sight, and that makes Janey very happy.

In some ways, it would be easier if Janey was not developing the typical teenage need for parents to not always be in her face.  The problem is that I can't see a future where she can have much independence except as we do it now---in the next room.  There are little, little things we can do.  We hold her hand less now---she is not a runner and she stays close to us, so that's possible.  In stores, we keep her in close sight but do sometimes let her walk away from us down an aisle to get what she wants---something she loves to do.  As long as we can see her, it's okay.  And she goes to school, of course---and she is horrified if I mention something her teacher told me happened at school.  She likes it to be her own world.

How do I respect Janey's need to grow up, to be her own person?  How does that work when it's just not ever going to be safe for her to really spread her wings?  I hope we can find a way to sometimes do what she so firmly asks us for---"Want to go away?"

Growing Up Fears

The other day, I glanced at Janey asleep on her bed and had the thought I think every parent has at one point---I thought "Who is that?"  She looked so big that for a minute I didn't recognize her.  Janey is growing up fast.  She is outgrowing her clothes like crazy, she now wears a woman's size 7 1/2 shoe (we all have big feet!) and after always looking younger than her age, suddenly she looks older than her age.  That is something that seems to run in my family---early maturation followed by ending up not very tall!  I am proud of my girl growing up, but I am also scared.

The world isn't as kind to autistic teens and adults as it is to autistic children.  This isn't something planned, but it's the truth.  I fight it very much myself, when I see an adult acting obviously oddly.  I tell myself "That is Janey some day" but there is something instinctive that makes me uneasy, that puts up a little guard.  I hate this about myself, but I have to be honest.  We expect kids to act in unpredictable ways, but when adults do, it takes a minute to see that they have special needs.  Here's another post by the mother of an autistic girl that tells of these worries very well----link here.

There is also the deadline that hovers over all of us in the alternative world of fairly severe special needs---age 22.  The schools will educate Janey until she is 22.  Then, she is an adult, and there is no more requirement by anyone to educate her.  I hope very much there will be programs in place for her at that point, but it's not a certainty.

These things combine to make me wish time would slow down.  Janey getting older isn't going to lead to the milestones we dream of for our kids---college, marriage, a job, kids of their own.  Janey getting older means for a large part the same Janey, but in a bigger body.  That must be incredibly frustrating for her, to the extent she understands it.  When I think about that, I can understand her screaming.

Of course, there is small ways in which Janey does get more mature, and I love seeing them.  Yesterday after school we went to the ice cream store, the neighborhood market.  It's just a very short way from our house, and Janey was impatient with my slow walking.  I made her stay next to me most of the way, but on the way home, I told her once we were just in front of houses that she could go ahead.  She ran to our driveway, and then turned and came back to me.  I told her she could go down the driveway by herself, and she ran and did that.  I thought about how just a year ago, I would not have dreamt of letting her run ahead of me, and I felt proud of her.  She is progressing in little ways all the time.

In thinking about Janey's future, I wonder if we are preparing her for it in the right way.  I think about what she learns at school.  School is set up for a future that it's unlikely Janey will ever have.  She is learning things that are meant as foundations of reading and writing and as an ultimate goal, a career or college.  She doesn't learn these things easily, or at all.  I wonder sometimes if her time would be better spent learning other things---how to prepare simple meals, how to do small house chores, and very importantly, how to enjoy the things she can enjoy---running, music, swimming and things like that. More and more, time spent trying to get Janey to say letters or count objects seems a bit wasted.  But when she learned how to throw away her own pull-up, how to put her clothes in the hamper, how to pour herself a glass of water---those things made her life and our life and her life happier and easier.  I picture a goal of her someday maybe walking to the ice cream store on her own.  We would watch her go, maybe trail her, but I picture her going in, picking out the ice cream, taking it to the counter and giving them money.  The workers there are so kind to her---we could prepare them ahead of time for her visit.  And she could walk home on her own.  That is a goal I would love to aim for, maybe 5 or 10 years from now.  It might seem like a little thing, but working toward that might make more sense than working toward reading.

The next big step our society is going to have to prepare for is all the current child with autism no longer being children.  We need to think seriously about what we would like their lives to look like, what THEY would like their lives to look like.  That is what I am going to start doing with Janey.  I think she has a chance at a happy life.  It's not going to be the life that most people lead, but I can see it being a life that has its own meaning and joy.  That is, I can on hopeful days.  On discouraged days, I am terrified of that future.