Visiting High Schools

Although it's extremely hard to believe, Janey will be in high school next fall.  And so we have been doing visits to the high schools in Boston with an autism program.  It's been interesting.

We've visited three schools so far.  There's another program which is in a building that is closing this spring, and the future of it is unsure, so we haven't visited there, and there's a few other specialized programs we haven't seen, such as the high school part of the inclusion school Janey used to go to.  But the three we've visited are the three main choices we have right now.

To start with, I'll say that at all three schools, I was impressed with the dedication, talent and caring of the teachers, administrators, aides and other staff I saw.  That has been the case almost universally as we've been involved in the Boston public schools for the last 21 years with our three kids.

However, there were rather huge differences between the programs we visited.  This is another hallmark of the Boston schools---the uneven distribution of resources and the way it always feels like each school is a world unto itself, with little feeling that any school really gets what another school in the very same district is doing.

The complex map of Boston schools!

The first school we saw was very close to us---we could walk there.  It was in an old building that in fact Tony's 3 siblings went to high school in (he's the baby of the family by 13 years, so their high school years were a while ago!).  The building had been totally renovated, and was strikingly clean and orderly.  The program was in the lower level, and had 4 main classrooms.  We saw all the classrooms, but at the time we looked, none of them had students in them.  I guess that's not that uncommon a state of affairs.  The woman giving us the tour said that some students in the program are actually fully integrated, others are away at work sites almost all the time, and some are working at places within the building.  That was a bit of a theme there---work.  The program seems mostly set up as a pre-vocational one.  The students, once they are 18, actually get paid for their work, and they do all kinds---car washing, catered meals, recycling and others, in and out of the building.

We did see the students eventually, in the gym shooting baskets.  We got to talk to a few of them.  The ones we talked to were quite a bit more verbal than Janey is, and although we were told there are a wide variety of students there, I got the feeling most were probably more academically and spoken language oriented than Janey.

We asked about electives like music and were told there are none at all, at least not formally.  Aides do provide informal electives.

We left feeling that Janey would be safe there, but not that it was really the place for her.  I somehow couldn't quite picture Janey there.  She isn't interested in or really aware of money, she certainly wouldn't be into shooting baskets, music is too huge a part of her life to not have any music at school, and overall, it just didn't feel like a match for her.  But it was a good program, and I think would be just right for many kids.

The second school was in a very, very run down building, in the heart of the city.  It was, quite frankly, a dump.  The classrooms for autistic kids were again in the cellar, in 2 crowded rooms.  The room for the older kids, especially, was very crammed, mostly taken up by a large setup for serving sandwiches, which is the main activity for older students.  The hallways were claustrophobic, in my eyes anyway.

However, the teacher of the room full of younger students was great, just highly gifted as a teacher.  The students were doing their morning meeting, which they pretty much ran themselves.  Each student said good morning to every other student, in verbal or non-verbal ways.  They discussed the weather, said the Pledge of Allegiance and talked about current events.  The students were at widely varying levels of speech, and some that didn't appear to speak verbally went up to the board and wrote down things with perfect handwriting and understanding.  It was an impressive class to watch.

In some ways, I could see Janey at that school.  However, in a lot of ways, I couldn't.  It was sad to see how little had been done to make the school a nice place for the kids.  There seemed to be very little for the students to do when they were older (special needs students go to school until they are 22, generally)  Again, there were no electives.  I asked about kids being paid for work, and they don't have that program and seemed only a little aware of it.  It's not that I want Janey to work a paying job, but it's an example of the variation between schools.

We would not accept a placement for Janey at that school, we decided.  It was too crowded, too chaotic in the halls, and somehow just felt a little unsafe---with nothing taken away from the teachers, who were great.

And then the third school.  This one was VERY far from us.  It took us about an hour to drive there, and to get there, we had to go through several other towns than Boston, although it's in Boston---just at one extreme end of the city and we are at the other extreme end.

However, the program there was GREAT.  It's our clear choice.

They had us there pretty much at hello, as the directer giving us the tour said "First we'll show you the students and classes, and then the students will all be going to music and dance, so you can talk to the teachers".  They have music and dance!!

There were four classrooms in the program.  The students move from room to room, like regular high schoolers.  We saw many students, working at many different tasks.  In general, the students seemed to be academically much like Janey.  Many seemed to not speak verbally, or speak verbally just a little.  Some seemed to have multiple challenges, like being in wheelchairs.

The teachers all seemed very dedicated, and there were many aides.  One room at first didn't have students in it, and the teacher said they were in the greenhouse.  A greenhouse!  That made me so excited!

The students have swimming at least twice a week, and on Fridays, most students go offsite to various places.  There are various opportunities to work within the building, although again, they aren't paid---not an issue.

It's hard sometimes to say exactly why one program seems right, but this one did.  We could see Janey there, absolutely.  The fact there is music, even if it was just that alone, is a HUGE factor.  The distance---not ideal.  But Janey loves to ride the bus, and with Tony now retired, if we needed to go get her, we could (I couldn't do the drive---I just don't drive much, and not in complicated areas like needed for this drive, but Tony can!)

So---we know what our first choice will be.  I very much hope that is where Janey is placed.  If not, I think we are ready for a fight.  We've never really fought for much for Janey at school, mostly because we just haven't had to.  We've agreed with most decisions made.  And from what I've heard, usually you can get into the program we liked, partly because not everyone wants that far away location.  But with the one program possibly closing, things could change.  We are ready to be advocates.  It's not my favorite thing to do, but we've both decided that Janey WILL attend that program.

I'd be very curious to hear from others about high school decisions (or any school choice decisions).  I know most places don't have as many choices as Boston.  Growing up in a rural area, the only school choice at that time was take it or leave it.  We are lucky to have options here, but it can feel a bit nervewracking.  I wish Janey could just stay where she is, but life does keep moving.  And next year, it will be moving Janey on to high school.  Wow.

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.

What it's like to visit a psychiatric hospital

Having Janey at Bradley Hospital, visiting her there, felt at first like something no other parent in the world has ever done.  However, when I thought about it more, I realized I can think of four other parents I know who have been in this situation, who have had children at psychiatric hospitals. Although I don't ever want anyone else I know to have to go through this, knowing that others have lived this somehow helped a little.  I won't tell their stories, what I know of them---they aren't mine to tell.  But I thought I'd describe what it's like to visit Janey in more detail, just in case any of you ever do have to live this.  You won't find this story in the cheery pages of parenting magazines.  The other mothers volunteering at the school or with their kids at the playground probably won't be chatting about this.  But it happens.

Driving to see Janey takes a varying amount of time, depending on traffic.  It's been as quick a drive as 50 minutes and as long a drive as two and a half hours.  During the drives, Tony and I listen to the radio, a classic rock station I don't know if I'll ever be able to listen to in the future, as it will feel forever associated with this time in my life.  But for now, it helps.  We can talk about the songs instead of our lives right now.  Often, Tony has worked all day before we drive, so I try to keep talking, to keep him alert.  But sometimes, there feels like there is little to say.  We cry now and then.

When we reach the hospital parking lot, every single time I get a strange feeling in my stomach.  It's a dread feeling, a scared feeling, a odd feeling I don't think I've ever felt in other situations.  I've felt dread and fear plenty of times, but this is different.  No matter how much I think I'm prepared for the visit, no matter how much I try to feel upbeat, it hits me.  I don't want to be here.  I want to see Janey, desperately, but I don't want to go in there.  It's not that it's not a nice place.  It's a beautiful place---clean, as friendly as it can be under the circumstances.  But I doubt anyone really wants to visit a psychiatric hospital.

When we park, I leave my pocketbook in the trunk.  You can take almost nothing in with you---no cameras, cell phones, watches, things like that.  I get my licence out.  We go into the waiting room and go to the desk, to tell them we are there.  We give Janey's name and our names, and show them our driver's licences.  We get visitor stickers.  Then we wait for someone to come get us.  The waiting room has lots of magazines and comfy chairs. But I hate being there.

After a few minutes, either someone comes from Janey's ward to get us, or one of the receptionists takes us to her ward.  To get there, three different doors need to be unlocked--that is why we always need to be escorted.  Outside the final door, there are lockers, and there Tony puts his car keys, switching them for the locker key, and we put anything else we might have that can't go into the ward.  Usually all we are carrying in is a bag of clean clothes for Janey.

When we get inside, we are in a big common room.  It's open and airy and nice, but it somehow doesn't seem like the kids spend much time there, at least when we visit.  We sign in there, and are taken to where Janey is, which usually is a smaller room near her bedroom.  There are two sections to the part of the hospital Janey is in, with a total maximum for both parts of 19 children.  Here's a link to more information, if you are interested.  The smaller room has tables and a television, and there are usually more adults working there than there are kids.

Janey generally spots us quickly, and looks happy to see us.  That's the best part of the visit---her smile when we get there.  My heart leaps every time I see her after being away.  Last night, we both felt she looked taller and older, even after seeing her just two days before.  It is so strange to see her there.  We take her into her room.  All the visits take place in her room, so we don't disturb the workings of the ward or the other kids.  The room has a bed, a table and a chair.  It has a closet which is usually locked, but which they unlock for us so I can get her laundry and put in her clean clothes.  There is a bathroom which is for her and a child on the other side of the bathroom.  Only one side is unlocked at once, so she has in essence a private bathroom.

Our visits are not as long as I wish.  We usually stay about a half hour to an hour.  We leave when Janey starts get restless, hopefully before she gets frantic.  We have not been able to spend time with her outside of one room for two and a half weeks now.  I think she is starting to see time with us as the boring time.  It gets hard to entertain her.  We play catch with her Care Bear, we sing songs, we tell her what is going on at home, we try to keep her engaged.  She asks for singing---last night she said "Christmas songs?" and started singing "We Three Kings of Orient Are" to prompt me.  She asks us for things we don't have there---cookies, bacon, chicken nuggets, fries, chips.  We never happen to bring the right things.  Eventually, she starts asking to take a walk.  We can't walk around with her there.  She starts to show signs of getting anxious, and eventually we reach the point where we know it's time to go.  We take her back out to the workers and say goodbye.  Sometimes she gets upset when we leave, and asks to go home with us.  Other times she seems relieved we are going.  I am not sure which is harder to take.

Usually, someone walks us out to the front desk, although a few times we've walked ourselves out.  We give back the visitor stickers  On the drive home, we analyze the visit.  We talk about how she seemed---calmer?  Happier?  We think about how things will be when she's home.  Then, we concentrate on getting home safely.  There's a part of the highway, near Pawtucket, which seems to be a center for cars chasing each other in some scary highway race, and we brace to drive through that.  Sometimes, we stop to get Freddy fast food on the way back, as we often don't have time for dinner before we leave.  We get home, exhausted.  We spend time with Freddy, the one child home right now, the child who is almost an adult.  We breath, and we get ready for the next visit.

Visiting Janey

Bradley Hospital, where Janey is being held, is in Providence.  In ideal conditions, it could be a 50 minute drive from our house.  However, anyone who has ever driven in or around Boston knows that those ideal conditions exist only at the rarest of times.  In some ways, the drive to get to Janey seems like a metaphor for so much of the last few weeks---frustrating, exhausting, yet crucially important.

I'll give yesterday as an example.  Tony went in to work extremely early, so he could leave at 2 and we could get an early jump on going to see Janey.  We left the house right around 3.  When we got to where we get on the highway (about 10 minutes from our house), we could see it was almost completely gridlocked.  There is s storm predicted for today, and Boston is full of college students and others who want to go elsewhere for Thanksgiving.  So Tony made a change and got on some local routes.  We used our GPS, which seemed intent on giving us a tour of southeastern Massachusetts.  After a long time, we made our way back onto the highway, and proceeded to creep toward Providence, at 10 miles an hour.

Finally, we got past an area where bridge work was being done, and we were able to make some time.  Regardless, the drive to Bradley took two and a half hours.

We had agreed a few days ago to be part of a major study of autism while Janey was at the hospital.  I spent a big part of yesterday filling out about 10 long forms about Janey's behavior.  We had agreed to have blood drawn last night.  By the time we got there, the woman we were going to meet with was gone, but a head of the study and the blood-drawer had stayed late to get the blood.  We explained the traffic, and I hope they understood, although Boston traffic seems to be something very Boston, which although Providence is quite close, they seem somewhat mystified by.

After having the blood drawn, we had to go back to the waiting room to wait to see Janey.  We were told she was a bit upset and we'd have to wait a minute or two.  When they came for us, they said she had been taking off her clothes again, and asking to go to sleep, as she often does at home, far too early.  They calmed her down and she was waiting for us in her room.

The visit on Monday was great---Janey was calm and happy.  Last night, she was less content.  It was nothing like the scenes at Children's, but she bit herself a few times and at one point half-heartedly pulled my hair.  She also did the repeated asking for things "Want chicken nuggets?  Want to take a walk?  Want water?"  We finally resorted to singing---we sang her a mixed medley of her favorite Beatles and Black Sabbath songs, Black Sabbath being my older son's favorite group.  We modified words as necessary!

After about 40 minutes, though, Janey wanted more action.  We aren't allowed to visit with her outside her room, and she wanted to get out.  So we said goodbye.

Before we went home, we needed to drive to Waltham and pick up William at college, so he could come home for Thanksgiving.  We were thrilled to be getting him home, but tired beyond belief.  The traffic was okay on the way back, but not perfect.  We took local routes home, and finally got home about 9:30.

When I got in and checked the mail, there was a badly photocopied 5 page letter from something called something like Value Health in Rhode Island.  It said they had authorized a 5 day stay for Janey at Bradley, and that any longer of a stay would have to be arranged by the hospital.  I am assuming that has been done, as today would be day 6, but I am not sure at all.  In my hazy state, the form was hard to understand.  We have Blue Cross, so I am unsure why some other agency is the one to decide on Janey's stay.  There was no number on the letter.  Instead, there was a form for JANEY to fill out to authorize me to get information on her behalf.  I need to read the form more today, but a quick look last night said this had to be done even if the patient was a minor.  I need to make calls and try to figure out what is up with all of that, but I have a feeling the day before Thanksgiving is not a good day to reach the right people.  I also know my mind is not in a great place for figuring out complicated letters and forms.  I assume the hospital would let us know if the funding for her stay had ended, but I have nightmares of multi-thousand dollar bills arriving.

And that is where we are.  Janey is calmer, but far from all the way back to what I am learning is called "baseline".  We are tired and stressed almost beyond functioning, worried about Janey and money and what comes next.  Today the weather will keep us from visiting, it seems, and although the drive is a nightmare, it kills me to think of a day without seeing Janey.  Nothing feels settled, nothing feels calm.  And I wonder if it ever will again.

Guilt and Bus Aides

This year, it seems Janey has a one-on-one aide on the school bus, both ways.  This isn't something we requested, or something in her IEP, or that we were told was going to happen, but we don't have a problem with it.  The aide in the morning gets on the bus when Janey does, and the aide in the afternoon gets off when Janey gets off.  There's another aide on each bus, for the rest of the kids.

I am not sure why Janey got a bus aide.  I don't think she's had real problems on the bus, not that we've ever been told about.  I'm sure she has screamed on the bus at least a few times, and bitten herself, because it would be pretty surprising if she never had, but usually she seems pretty calm on there.  My guess is that once she even once showed that she could potentially be very distracting to the driver, they insisted on aides.  And that is fine.

When Janey gets off the bus, it's usually about two in the afternoon.  Tony gets home about five.  Those aren't easy hours.  I've been trying to figure out ways to make them better, and I've over and over thought about trying to find a class or program during that time.  However, something always stops me.  I woke in the night last night thinking about it, and I realized I just plain don't feel able to take Janey anyplace in the car by myself any more.  I do take her for short rides, once in a while, but the thought of driving any distance with her, just the two of us, scares me very much.

Janey is rapidly getting bigger.  She's going through a growth spurt.  Along with that, she seems to be far more prone lately to sudden rages.  They come out of no-where.  Things can seem fine, calm, and then suddenly, Janey lashes out.  She lunges at whoever is nearby, she smashes things with her fist, she bites herself, she pulls our hair, she screams her incredibly loud scream.  If this happened while I was driving, it could be a catastrophe.  If you've ever driven the streets of Boston, you know that it's crazy out there.  I am not a confident driver.  I need to concentrate while I drive.  I hadn't realized it consciously, but the fear of driving alone with Janey is the reason I haven't been able to move forward with afternoon programs.

When I woke in the night last night and realized this, my default emotion was guilt.  That's no surprise.  That's my default emotion for any situation.  But then I thought about the bus aides.  Professional drivers, with already one adult on a bus, decided it wasn't safe to drive with Janey unless a second adult was assigned to her.  I had a moment I rarely have when I thought about that---a moment of realizing I shouldn't feel guilty.

I read a statistic lately in an article about autism and aggression.  It was one of those articles which highlighted very high functioning people with autism, and emphasized how rare it is for autistic people to be aggressive.  That's an important notion to get out there, I agree.  The article had a statistic I hadn't heard before---that only 7% of autistic people are low-functioning with aggressive behaviors.  I wish I didn't have to admit to myself that Janey seems to be falling into that 7 percent.  I hope against hope she someone gets over the lashing out.  But for now, I have to live in the reality of the present.  And I have to keep her safe, and myself safe.  Until I can be sure that I can, I need to accept that I'm not going to be driving her around on my own very much.  And I am glad the Boston Public Schools transportation department helped me see that.

Holding Our Breath, Knocking On Wood

I've been waiting a few days to post an update on how it's going with Janey's move to the new school.  I have a huge fear of jinxes---I'm a Red Sox fan, and I grew up with parents who believed very strongly that if you spoke about good fortune, it was absolutely necessary to knock on wood.  So I am knocking on wood non-stop while writing this.

How is it going?  It's going, so far, amazingly, astonishingly well!  It's a smoother transition than I think anyone could have dreamed of.  I am getting great reports from Janey's new school from her ABA therapist, who also worked with her at her old school.  I haven't gotten any desperate calls about her behavior.  She comes home tired and a little weepy, but that's after a 10 hour day!  She is sleeping quite well, and she is taking the bus like she's taken it her whole life.

The bus alone is something that has given me respite beyond what I ever dreamed.  For 14 years, I drove one child or two every day to the Henderson School.  It was basically a 20-40 minute drive each way, through city streets.  The drive got to be automatic, and I didn't feel like I really minded it at all.  I listened to music and talked with the boys or tried to talk to Janey.  But it took up a big chuck of day, and any Boston driving is stressful.  Now, before 7 am, I go out my own front door and stand there, and a bus comes to get Janey.  She hops on willingly, and I don't see her again until about 5 pm, when the bus brings her home.  It feels like cheating---it feels unbelievably easy.

The morning, I had one of those moments where I was suddenly taken back through the years to my own childhood.  As we walked to wait for the bus, the way the air felt or the light looked took me to a moment when I was probably Janey's age, waiting for the school bus in front of my own home.  There are not a lot of moments of Janey's life that feel like they are similar to my childhood.  I grew up in rural Maine, the older of two girls, Janey is growing up in urban Boston, the much younger sister with two older brothers.  She is autistic, I wasn't.  I lived in a world of books and friends and the ocean, she lives with videos and parents and the small urban backyard.  But at that moment, I had a strange feeling that the moment was exactly mirroring one I'd lived before---a deja vu moment via her.  It gave me a feeling of connection to her that was very special.

So---we are holding our breath.  I think some people might wonder why we aren't more relieved, more relaxed and happy that things are going so well.  We ARE happy, but we also know that with Janey, things can and often do change on a dime.  She is cyclical, and we made the change during a very good point in the cycle.  Of course I always hope the cycle will stop moving---that this will be how it is forever.  But I know that's probably not the case.  When the tough times come again, how will it go then?  Will Janey scream and refuse to get on the bus?  Will she cry all day at school, and bite and scratch herself?  Will she stay awake all night and be manic with laughter all day?  I hope not.  I very much hope not.  And if she does, I hope that being in a program completely designed for autistic kids will help.  She couldn't possibly have been loved more at her old school, but maybe she needed more than love---maybe she needed a program designed especially in every way for children with autism.  We will see.

So, for now, so far, so good.  A huge thank you to everyone who has made this past week better than we ever imagined it to be.

The everyday, autism style

I was tired today.  I'm tired pretty much every day, to be honest.  But today wasn't after a particularly bad night or crying spell or rough patch with Janey, and I was feeling like I should have more energy.  Then I thought about how every day, every routine, every part of my life is affected by Janey and her autism.  Not always in a bad way, but almost always in a tiring way.  I picked one part of a typical day and thought it through---the ride to school.

We head out of the door.  At the top of the steps down to the driveway, Janey stops.  She stands there, looking into space, looking like she has no idea what comes next.  I try hard not to take her hand and lead her down.  She is very capable of walking down the steps by herself.  I go to the bottom and call to her "Come on, honey.  It's car time.  Come down and get in the car."  If she's exactly in the mood, she might, but usually she gives no sign of having heard me.  Sometimes I say it again and again, finally using my firm voice---"come down the steps RIGHT NOW"  That usually does it.  Other days, when we are rushed, I go up, hold her hand and guide her down.  We go to the car.  I open the back seat.  She stands by the door, again, looking confused, as if this is something we've never, ever done before.  I say "Get in the car, please"  She ignores me, 9 times out of 10.  Like the steps, some days I wait it out, saying it over and over, other days, if we are running late, I take her hand and guide her in.  I tell myself every day I will leave early enough so there is time to always just wait her out, but you probably know how that goes.  When she gets in, I buckle her in and we are off.

While we are driving, there are a few things I need to watch for.  Janey likes to put things in her mouth.  Food if possible, non-food things if that's what's around.  I try to keep the car free of floor trail mix, but I am not the tidiest person in the world (those of you who have met me in person, please stop laughing!), and Janey sometimes finds an old chip or cracker.  I yell out "don't eat food you find on the seat (or floor)!"  But she knows I'm driving, and she does what she wants to do.  I figure we all have to eat a peck of dirt in our life, they say, but it's worse when she bites on a stuffed animal, or book or the seat belt, or whatever.  It's hard to drive when you are keeping an eye on the back seat always also.  I put on music, most days.  Janey likes most of my music, but when she doesn't, she screams, and I change the song quickly.  I've tried in vain to teach her to say "I don't like that song!" but she prefers the scream.  If she does like a song, she will quickly say when it ends "Do you like that song???" with extreme intensity.  That means I need to play it again, or risk a catastrophic falling apart.

The drive to school takes around 25-30 minutes, through Boston traffic.  I hate to drive, but this route has become so familiar to me I don't hate it quite as much as most.  It's still a constant stress, though, and spending 2 hours of my day behind the wheel total is probably a big part of the tiredness.  But it's worth it, to have Janey at a school I love.  She could take the bus, and I think about it, but I don't think I'm ready.  Unlike my bus growing up or the bus in smaller towns, I don't know the drivers, and many of them don't speak English well.  Janey is prone to screaming, prone to unbuckling her seatbelt, prone to not being an easy passenger.  The buses are often mostly empty, due to Boston's odd school zones and busing history.  And it makes me nervous to think of a mostly non-verbal girl, possibly by herself on a bus with a driver I don't know.  I might need to get past that some day, but I'm not ready to yet.

We arrive at the school, and find a place to park---often quite a challenge.  There is no parking lot, just assorted on street parking.  I open Janey's door and say "Unbuckle your seat beat and hop on out".  Again, the blank look, as if I am asking her something bizarre and unheard-off.  I started having her unbuckle herself when we got to school after a series of times she unbuckled herself while we were driving, always at the middle of some dangerous and not stopping-friendly intersection.  My aim was to teach her the right places to unbuckle, but I don't think it's worked.  She finally, after the same routines of re-asking and guiding, unbuckles and gets out.  I put on her backpack, and we walk in.

Lots of people say hi to Janey.  She never answers, in the morning anyway.  Sometimes in the afternoon.  She goes into the school with her blank, stoic look.  Once in a while, if not a lot of people are around and we have time, I try at safe places not holding her hand, to see if she has any idea where the school is and where her room is.  She usually just stops in place if I let go.  It's like I am her motor.

When we get to her room, I give her a kiss.  Her teachers remind her to say goodbye, and after enough reminders, she does, in a fashion.  I don't linger, but I stay long enough to see her standing there, waiting for the next reminder.  She's had the same routine in the mornings for 6 years now, but every day, it seems new to her, as if she's thinking "Take off my backpack?  Wow, that never once would have occurred to me!"  I get in the car and head home.  Sometimes, I take a nap right away.  And I try to not judge myself for that.

Janey and the dogs

My sister had a copy of the picture I'd been looking for, showing Janey with 4 big dogs. We were at my cousin's house in Washington, during our big trip, and the whole trip, Janey was deeply in love with dogs. My aunt had a wonderful old Rhodesian Ridgeback, Gidget, and Janey loved her so much. It's part of why it's so perplexing to me that she has such a horrible phobia of dogs now.

Thinking about the dogs on that trip always makes me think about how the trip affected Janey. We drove cross country to Olympia, Washington. 6 days out and 6 days back, 9 days there. It was a wonderful trip, a dream come true for me. The boys and Tony loved it too. And mostly, at the time, Janey seemed to enjoy it. She turned 3 during the trip. Now, looking back, we date her autism starting to the trip. Before we left, I have to say she was showing a few small signs, and I was first starting to have questions. She started preschool a week or so after we got back, and within a few weeks, her talking pretty much ended. I always wonder if there could have been a connection. She spent long hours in her carseat, but she was next to Freddy, and we are talkers---there was certainly almost no time that she wasn't surrounded by conversation. But could she have gotten a blood clot from all the sitting? She wasn't sick on the trip, I don't remember any day during it she acted radically different, but in a way, the non-autistic Janey left us somewhere around the time of that trip.

I resist thinking about Janey before the autism. I try to convince myself often she really wasn't okay, even then. But then I think about how she was in Early Intervention all those 3 years, because of her severe physical delays, and no-one once suspected autism, and those were professionals trained to see it. I remember the last time the PT saw her, and Janey was totally discharged from EI. We laughed about how at least we knew she didn't have speech issues. It breaks my heart to think of that, sometimes. We have videos of Janey talking. I watched part of one, once. I suddenly screamed during it, a scream that I didn't even recognize as myself. I turned it off and told Tony I never wanted to see it again.

This is why although I don't think vaccines caused Janey's autism in any way (she had none anywhere near the time of her regression), I can understand very well how people that believe that did cause their children's autism feel. If she HAD had a vaccine at that time, it would be very hard not to associate it with the horrible regression.

I do think Janey always had the seeds of autism. She talked, she was social, but when I am really thinking about it, she was always a little bit something hard to define. She talked more to me than to anyone else, and there were friends of mine who had rarely heard her talk. I remember thinking when she was 2 or so that her words were like bubbles---beautiful and perfect, but when she wasn't talking, it was hard to picture that she could. But it was nothing like afterward, or like now.

So, like the Janey that loved dogs, that Janey isn't here any more. We have a Janey, and I thank everything there is to thank for that. I do miss my other Janey sometimes, though.