The Answered Question

Yesterday, I waited in the car with Janey while Tony picked up some books that were on hold at the library.  I had Tony's phone, and to keep Janey happy, I asked "What song do you want to hear?"  And she answered.  She said, right away without a pause, "Lady Madonna"

If you knew how rare that kind of answer is with Janey, you'd know how very, very happy it made me.  You might rightly ask "Then why do you ask the question, if she doesn't answer?"  Well, lots of reasons.  Even if she doesn't answer, it can often start a dialogue.  The usual result would be her repeating "What song do you want to hear?", which would lead to me making some suggestions, which then leads to her repeating back one of the songs I said.  Then, I put it on and either it makes her happy or freaks her out.  If it freaks her out, sometimes she'll then say or give a clue what song she does want, or use the feature that shows related videos or songs to pick one she likes.

Often, though, I just ask because it's very hard not to.  For a while, I decided I would try not to ask Janey questions.  It felt like something I should try, since she so rarely answered and I wondered if just being asked felt like pressure to her.  I wrote about trying do that here.  I tried for a while, and then the trying just kind of died a natural death.  I generally am not a fan of doing anything with Janey that feels artificial, forced, and that did.  So I kept asking.

The biggest reason I ask is that I hope for answers.  I want more than almost anything on earth to really know what Janey wants, what she likes and doesn't like, what delights or confuses or scares or excites her.  I want to understand her, to know who she is, so I can make her life as much one that she enjoys living as I can.  And that is why getting a direct answer from her meant so much to me.

I found "Lady Madonna" on YouTube and played it.  Janey didn't respond much.  Usually if she likes a song, she gets very excited and flops her arms around and smiles and laughs.  She didn't at this one.  I later realized that I might not have checked well in my excitement and it might have been a cover version, as there are few Beatles videos on YouTube.  Or maybe she just wanted to hear it for some reason other than that she loved it.  I certainly sometimes listen to music I don't love, to hear the lyrics or understand the style or expand my horizons.

I have a feeling, a hopeful feeling I almost hate to mention for fear of a jinx, that we are close to a new era with Janey.  I feel like she's on the edge of breaking through, of showing us more of who she is, of communicating more.  I'm not sure why I think that, besides little things like the answered question.  But I was thinking today how teenagers, for better or worse, tend to come into themselves, to know what they like and don't like, and they aren't shy about letting people know, usually.  And Janey is within a year of her teenage years.  With all the talk about how crucial the early years are for kids like Janey, I think it's sometimes lost that a lot of kids get easier as they get older.  Maybe "easier" isn't the right word.  I don't want it to be just that it's easier for me, for us.  I want her to be happier, and maybe I should say a lot of kids seem to get happier as they get older.  So far, puberty doesn't seem to be tormenting Janey much.  Overall, she is happier than at any other time in her life.  Not every single minute or hour or day, of course, but overall.  And I hope the answered questions help, and keep on coming.  They are wonderful.

Tougher, the same as and better

Janey will be 11 soon, and I've been reflecting on what 11 is like for typical kids, what 11 was like for me.  It's not the easiest age for any girl, I don't think.  It's typically the start of middle school years, around the start of puberty and of girl on girl meanness and on starting to notice boys, the age of questioning your parents and figuring out who you are.  I think a lot about ways that life with Janey is, all at the same time, tougher and the same as and better than with most almost 11 girls.

The tougher part is quite obvious, of course.  It's a lot of what I write about.  It's tough to have a girl her age who isn't usefully toilet-trained, who is minimally verbal, who has no academic skills, who screams and bites herself when she's upset.  It's terrifying, as we found out, to have a child who can't tell you the most basic things that are wrong physically---who can have a burst appendix for days that even doctors at a top notch hospital can't easily detect.  It's sad to not ever really know what Janey's life at school is like.  It's very hard that she doesn't have friends.  It's heartbreaking that her future is not going to include marriage or a career or children.  All that is, putting it mildly, tough.

Some parts of Janey at this age are really not that different than having any almost 11 girl.  That hit me this past weekend at the beach.  Janey loves the beach, and she ran in and out of the waves and picked up shells and just had fun in a way that was truly not that different than anyone else her age.  Of course we had to keep an eye on her, but we would be keeping an eye on a typical girl that age in a public place.  Her enjoyment of the beach was not because of her autism, or despite her autism---it was just enjoyment.  When we all sit down to eat Chinese food or pizza, she is no different than any sister in a three kid family.  She grabs her share and we all gobble down.  There are moments when I look at the three kids in the back of the car and think "There's my family!" and don't think for a minute about the autism.  That might not seem like a big deal to most people, but it's a wonderful kind of ordinariness to me.

And there are the parts of Janey at this age that are better than what I think life would be like with a typical almost 11.  Yesterday after school, I put on some Beatles while I did dishes.  Janey was in the kitchen with me, and she delighted in the music.  She delighted to such an extent that she was truly in a state of bliss.  We listened together to "In My Life" 5 times, as she kept hitting repeat, and as tears came to my eyes, she hugged me over and over.  Then we danced to "Birthday", the theme song of her shared birthday with Freddy.  I thought about this birthday to come, when my baby will be 11 and her brother Fred will be a legal adult, 18.  I thought of the moments of joy with Janey, and how she will in some ways always be my sweet little girl.  The joy with Janey is pure and overwhelming when it happens.  Those are the moments that keep us going.

Delight and the Chocolate Bunny/Happy Meal trip

Janey came home from school with one thought in her head "I need a chocolate bunny".  It's the season for bunnies, and Janey is a huge fan.  So, since the weather is finally better and it's not impossible to drive, I decided to surprise her with a "yes", and we jumped in the car for the short ride to the "bunny store" (the Rite-Aid)  On getting back from that little trip, I thought about all the ways Janey had delighted me in that brief time, all the things she had done that make me love her so much.  Let me count the ways...

1.  The love of chocolate bunnies (and Kipper and jumping and bacon and Auntie Carrie and the Beatles and chocolate milk and so many things).  Janey loves the things she loves with a passion.

2.  Her amazing memory.  On the way to the bunny store, Janey sang a song I'd sung her a few months ago, one I'd made up on the fly "Janey wants a chocolate bunny, but MAMA SAID NO!"  I resang it to her with "yes" instead of "no", but she sang back the classic version again.

3.  Her willingness to change plans.  About half way to the store, suddenly her need for a bunny was overtaken by her need for a Happy Meal.  The two are in the same direction, and I guess she realized she actually had a taste for nuggets and fries.  I said that meant we weren't going to get a bunny, and she was fine with that.

4.  Her ability to surprise me all the time.  After getting the meal, Janey again broke into song, this time with "Paperback Writer", from her current Beatlemania.  I never know what she's going to sing next, and I love that.

5.  Her enthusiasm for life.  As we walked in with the meal, she was literally dancing around with excitement.  I love it that something as small as a fast food meal can make her that happy.

6.  The times she shows her typical preteen nature.  This morning, as every day this week, we had to wake her up for school in the morning, due to the time change.  She was not pleased, and gave us that look that says "I wish you were both out of my life" and pulled the covers back over her with defiance.  These times aren't autism meltdowns, they are just Janey showing she is pretty much like any kid who hates being woken up.

Life with Janey isn't easy, much of the time.  But it's always surprising.  It's always full of life.  It's always interesting.  She's a pretty cool person.  We've learned, now that we are on our third child, that children are who they are.  This is independent of autism, or of IQ, or of parenting.  They are born to be who they are.  Janey has traits that we are starting to see more and more which are just Janey.  Some of them are frustrating traits.  She's stubborn, she has a quick temper, she is easily bored.  But all of her traits, the ones that we delight in and the ones that can drive us crazy, are part of her.  Not part of autism---autism doesn't change her personality.  It changes how she can express it, it changes how she interacts with the world, it changes her past and present and future plans and possibilities, but it doesn't change who she is.  And who she is is pretty cool.

Starting the School Year

Janey is off to a good start to the school year.  That makes me happy, although I do always keep in mind that the start of almost every school year has been good for Janey.  She loves being in school.  I think she hates the summer and the lack of structure almost as much as I do.  But that being said, every year it is a wonderful relief that her love of school still holds, and a tribute to the teachers and staff and students that make school enjoyable for her.

This year she is going to afterschool every day.  That was a hard decision for me, but I'm not sure why.  I kept thinking a GOOD mother would not put her child in afterschool unless she absolutely had to, or if she did, it wouldn't be every day.  However, what I wasn't thinking about is that a good mother also takes into consideration what makes her child happy.  Janey did not like it last year having an inconsistent afterschool schedule, and she never liked the 2 hours before Tony got home on the days she had no afterschool.  When I pick her up this year, she is always extremely happy.  The principal helped me get over my final worries, by saying "Look how happy she is!  This is where she should be after school, if she's that happy!" That helped a lot.  It's all part of the process, realizing that Janey is not my other kids.  She needs more people, more support, more activities than I can always realistically provide at home, with the other duties I have.  So she is happy, and I am happy, getting more work done than usual.

I'm noticing the one time she does fall apart now is right before bedtime.  When she gets tired, like almost everyone, she has trouble holding it together.  I am starting, when that fussy time hits, just quitting all else and lying down with her, and singing and talking and just spending some alone time with her.  Often, she drifts off after a while of that, but if she doesn't, she's at least calmer.

The other day, after a grocery store trip, a Beatles song kept running through my head, the lyrics that say "I have to admit it's getting better,a little better all the time"  It isn't always, but that trip made me see how far she has come.  Once we got in the store, I barely held her hand.  She stayed with me, and the few times she got a little further than I liked, she came right back when I said to.  She picked out a few things she wanted from the shelves (mainly BBQ chips in 2 different sizes) and she hummed to herself and was very cheerful.  When we got to the car, she wanted her chips, but I told her they were for after school (this was before school) and she accepted what I said without a tantrum.  I didn't feel drained or out of it after the trip.  I am sure people looked at Janey, and wondered what was up with her, but I really didn't notice or care.  It's not just her who is progressing, it's me, too.

And so a cheery post for once.  The fall is my favorite time.  It feels like a return to regular life after the summer.  It always gives me hope, as the spring seems to give other people hope.  Janey is growing up, little by little.