A great trip with Janey, but missing her brothers!

On Saturday, we headed out to upstate New York to take Freddy to college.  He is going to Skidmore College in Saratoga Springs.  I must say that overall, in terms of Janey, it was a hugely successful trip.  She is a great traveler!  We kept looking for wood to knock on over and over, as we commented on how well she was doing.  I think if we took every minute of screaming and tantruming from the whole over 2 day trip, it wouldn't add up to more than half an hour---which is incredibly good.

Of course, the trip was hard on me anyway!  I had a hard time saying goodbye to Freddy.  He's an incredible kid, and it will feel very strange not having either him or his equally incredible brother William at home.  For now, it's just the three of us---Tony, Janey and me.  But as I said to Tony at one point, I'm feeling a little more optimistic about the future after seeing how well Janey did on the road.

Janey digging in at the Chinese buffet

Part of what made it work is that we kept things very low key.  Janey loves just being in the car, driving around, and Tony and I do too.  We rented a big SUV for the trip, which we loved!  Our car is an old Saturn with almost no modern features, not even automatic windows or a consistently working car radio, but the Ford Explorer we rented had everything.  We kept joking it was like we were suddenly in the world of the future.  I especially loved the Sirius Radio.  I wanted to explore all the stations, but Janey has a routine of listening to certain music in the car, mix disks that Tony has compiled, and to keep her happy, when she asked for "Disk?  Disk, please!  Disk"  we put one of hers on.  We also didn't try to do anything touristy besides driving around and looking at things.  We didn't try eating out except for quick places like fast food or a Chinese buffet on the way home, and we didn't visit local landmarks, except by driving by them.

The fancy lobby of the hotel.  The rooms were NOT as fancy!

I was very worried about the hotel.  It's racing season in Saratoga Springs, so all the hotels there were either fully booked or exceedingly expensive, so we stayed in a neighboring town in the hotel that made my Priceline offer.  It turned out to be a very old, once grand but no longer hotel.  I read reviews of it that mentioned the thin walls and the complaints about noise, and I could picture Janey's screaming getting us kicked out.  However, even with internet that didn't work at all the first night, Janey didn't scream!  When she got a little loud, I said in an exaggerated whisper "We have to be very quiet at hotel houses.  Shhhhh!"  Janey found that hysterical and started walking around imitating me, but in a whisper, which worked well for keeping her voice down!

One of the best parts of the trip was swimming.  The hotel had a lovely pool, and we used it mid-day, and had the whole pool completely to ourselves for over an hour.  Janey loved being in the water!  We also went into the hot tub next to the pool with her for a little bit, and that was amazing.  For the 10 or so minutes we were in there, she was completely quiet and calm.  We all three just sat there, enjoying the heat.  I can't remember, ever ever ever, having a time like that with the three of us.  Tony and I kept looking at each other in wonder.

Tony waving goodbye to Janey on her first day of 5th grade

We got back Monday night, and Tuesday morning early (6:30!) Janey got on the bus for the first day of school.  Evidently, things went well.  The bus was an hour late getting home, due to first day glitches and the hot weather, but Janey took it in stride and seemed perfectly happy getting off.

So now, we start the next phase of our lives, what will probably be the phase until we are gone, the three person family.  Of course, the boys will be home for vacations and summers, and I can't wait.  But it's never going to be quite the same.  I was surprised by the depth of my emotions at having both boys gone.  I kept thinking about how it seems only a few days ago they were toddlers, and I would think "Can't they ever go a second without needing me?"  Now they are adults.  It goes far too fast.  Even with Janey, where time sometimes seems to stand still.  She is almost as tall as I am.  None of the clothes I had set aside for the first day of 5th grade fit her.  We share shoes.  She is growing up too.  The future comes rushing at us relentlessly.  Best of luck, my college junior and my college freshman and my 5th grader.  I love you three.

A thankfully rare memory of rude people!

Janey's brother Freddy has been attending an after-school support group for siblings of children with special needs, run by a fellow student.  I am so happy he's getting a chance to talk with other kids who truly understand what life is like for families like ours.  The leader of the group asked him to write about a memory that stood out from his childhood involving Janey.  He wrote about a time I remember vividly.  Here's what he wrote...

Going out to public places has always been one of the most difficult things to do with my younger sister. When she was around 6 and I was 13, we went to a fast food place simply because my sister doesn't do well with long waits. My sister was just being herself, quoting the TV shows she likes, repeating nursery rhymes, and occasionally joyful outbursts. She wasn't bothering anyone, or so we thought. At the table next to us, there was a family of people from another part of the country with two children, a boy and a girl, under 10. I'll never forget the way they looked at my sister. They stared at her and exchanged whispers, as if she were some sort of alien. Instantly, I felt extreme hatred towards them. Jane is my sister, how dare they even look at her like that. Of course, they may have just never seen an autistic child before, and they were "interested" or something, but I couldn't take it. I had to get us out of there, because I couldn't take another minute of their stares. When we got into the car, my brother and mother felt the exact same way I did. We had just as much right to eat at that place as they did, and they were staring at us like our hair was on fire.
Don't get me wrong, this didn't stop us from eating out. Luckily, most people in Boston are quite tolerant of special needs children, but I have no tolerance for those who don't.

 I remember so much about that awful meal.  The family was talking loudly at first, before they noticed Janey, and we heard all about how they were vacationing here.  Janey was being so good, I was thinking at the time.  She was sitting nicely, eating, and talking away.  We loved then and love now when she gets into one of her fairly rare talkative moods.  As Freddy said, she was quoting all kinds of shows, singing a bit and perhaps now and then making a happy noise.  The family suddenly got very quiet.  They all started staring at Janey.  This wasn't any subtle stare.  It was an all-out stare, like, as Freddy said, they were watching an alien being.  Then they started the whispering---taking a look at her, whispering to each other and then taking another long look.

What upset me most was that the adults (what looked like a mother and grandmother) were fully involved in this staring and whispering, just as much so if not more so than the kids.  I remembering hoping against hope that the boys were not noticing what was going on.  However, before we finished eating, they both asked to go.  I was happy to.  We gathered up our food and went to the car, Janey happily holding our hands.  For once, I was very glad she was oblivious to all that was going on.

In the car, both boys burst out in anger.  They were furious at the family.  And I found myself completely unable to disagree.

What strikes me is how unusual this scene was.  I've had people say something nasty to me about Janey maybe three times ever.  I've had people notice her and look sad somehow.  I've had people ignore her.  But I don't really think I can ever, ever think of another incident of people staring and whispering.  And that is good.  Maybe Freddy is onto something.  Maybe the greater Boston area is a good place to have a child like Janey.  Bostonians are fairly tolerant.  They are also generally not whisperers, I'd say!  If they have something to say, they say it.  Maybe this family felt it was more polite to stare and whisper than to smile at us, to let us know that they saw Janey was unusual and to talk to us about it.

I'm thinking in contrast of something that happened this weekend.  Tony and I were at a Dunkin Donuts with Janey, and she ran away from us and went to a table where a man and woman were sitting.  She reached for the woman's doughnut just as Tony grabbed her and stopped her.  The woman gave us a big smile as Tony said he was sorry.  She asked Janey her name, and Tony said Janey was autistic and wasn't much of a talker, and asked Janey to say her name, which she did.  Later, when taking Janey to the bathroom, we passed them again, and they smiled and waved to Janey.  That was a case where the people obviously realized Janey had special needs, but they acted in such a way that we left feeling happy and included.  It takes so little to do that, and I must say, most people are great in that way.

Memory is funny.  I am not sure why Freddy and I, and William too, so vividly remember that awful family.  I wish memory saved instead the many, many times people have been kind to Janey, have delighted with us in her uniqueness.  They are the people I want to have occupying my memory.

Under The Breath Talking

Yesterday, Janey was holding the LaLaLoopsy doll I got her for Christmas.  I asked her, in the way that I am constantly talking to her without expecting an answer "What is your dolly's name?"  She then talked under her breath, and I think she said "Elizabeth"  I said "Is Elizabeth your friend?" and got another under the breath answer, which I took as "my best friend"

This set up a perfect example of something that Janey has done since she was very, very little, before even the regression.  She says some of her most conversational and meaningful things in a very, very low voice, not quite a whisper but a fast and low tone that is quite hard to hear or understand.  And I am never sure if I am hearing and understanding her correctly.  It's an example of the Ouija Board phenomenon, as I think of it.  I WANT her to be saying certainly things, and so maybe my mind assigns that meaning to sounds that don't really mean that.  Or maybe she really does say meaningful things in a voice that's hard to understand.  This one was a case of something I'd love almost more than anything---for Janey to be playing with a doll, for her to have an imaginative life like that.  The very fact I was asking her the questions about the doll shows that.  And the human mind is good at making the world what it wants the world to be.  So did Janey mutter something at random and I heard "Elizabeth"?  Or did she say that?

I couldn't get any more from her about the subject.  She just went back to playing with the doll in her favorite way to play with anything---biting on Elizabath or Not-Elizabeth's foot.  But she was having a great day, and in general was alert and happy, so who knows?  Maybe sometimes we have to play those games with our mind.  Maybe that's part of how language happens---the first "Dada" and "Mama" might not really be those words, but we make them so, and they become meaningful.  Maybe I shouldn't care.  Maybe I shouldn't be so determined to make sure I'm never being fooled.  Maybe I will find Elizabeth and put her in bed with Janey and just feel happy, for now.