"How was school today?"

Shortly after Janey started K0, which here in Boston is what they call public preschool for 3 year olds, I asked her one day after picking her up how school was.  She said "We did music with Mr. Tim.  We sang a snowflake song"  I was a little doubtful, as it seemed early in the year for songs about snowflakes, but I asked her to sing it and she sang a little.  That's all I remember about that conversation.  I wish I remembered more.  It was the only time Janey was to ever tell me about her day in school.

Writing that, I'm crying a bit.  I don't like that much to think about Janey pre-regression.  Her regression was late and severe.  It started a bit before she started K0, a class she was in not at all on an IEP or in special ed, but that she got into because Freddy was at that time in 5th grade in the same school.  The first day of school, I mentioned to the special ed teacher in the classroom (as it was an inclusion school and each room had both a regular ed teacher and a special ed teacher) that I was starting to have some concerns about Janey, and I asked him to let me know if he saw anything that made him share those concerns as he got to know her.  It was only about a month into the year when he said he did, and it was a couple months after that that Janey was formally diagnosed as autistic.  During those months, she lost nearly all her speech.  It has never returned to the level it was when she was two.

I am very grateful that Janey does speak verbally at all.  I know it's something never to take for granted, something that so many mothers of children like Janey would love to hear, to hear a single word ever from their child.

It's still hard, though, to think about when Janey talked more.  Usually, I just don't.  I don't watch, ever, the few videos we took of her talking.  Even though I don't watch them, I wish we had taken more.  You don't think about that.  You don't think that the chattering of your two year old might be something you never really hear again.

During our cross country trip, during which Janey turned three, just before starting the K0 class, we stopped at the Custer National Battlefield in South Dakota.  In the gift shop, Janey saw a family with a girl about her age.  She walked up to them and said "Hi!  I'm Beautiful Janey!"  We still laugh often at that.  She had been hearing from relatives we visited on our trip all the time how beautiful she was, and I guess she'd internalized it pretty well.  I remember that moment so vividly.  It was another last, the last time I remember her ever introducing herself.

Another time, shortly before the trip, Janey started singing "Elmo's got a gun..."  I asked her where she had heard such a thing, and she said "Freddy showed it to me, on the internet"  There was a Sesame Street parody video featuring that song, and Freddy owned up.  That was the one and only time ever she told on her brother.

For a long time, I thought Janey's speech would some day come back to where it was when she was two.  It ebbs and flows, but it's never come close to that level.  Sometimes I read old blog entries and realize that it's not as good now as it was when she was around 6 or 7.

Janey knows a lot of words, words that seem stored and that come out only on rare occasions.  A few days ago, I was reading her "Go Dog Go", her favorite book, and for some reason I asked her what the dogs on the boat on one page were playing, and she said easily and quickly "A banjo" which was completely correct.  I had no idea she knew that word, or other words she's used in that same context, to answer a direct identification question---"raccoon", "drawbridge", "crab", "volcano"---to name a few I can think of.  But in daily life, she uses mostly one sentence, modified slightly for what she wants..."I want cheese.  I want soda.  I want snuggle on Mama's bed"

Every day, every single day, when Janey gets off the bus, I ask "How was school today?" Every day, she doesn't answer.  I don't know if she ever will again.  And I wish, like the old song, I could have saved time in a bottle, and could hear again that one time that she did tell me how her day was.  I wish that a lot.

Better Than Typical

Trying on a cape!

It's interesting that I am a lot more cautious when writing about the extremes of Janey's behavior than about the everyday parts of it.  I'm always a little wary of being completely honest about how bad or how good it sometimes gets, although I always do try to be as honest as I can.  But either extreme is something I know can be hard to read about.  I don't want to discourage those with girls like Janey when I write about the toughest times, and I don't want to discourage them by writing about the best times, either, if they are going through tough times.  However, our one night trip last weekend with Janey was so wonderful I feel like I have to share.  And what kept striking me the most is how I imagine it was far BETTER than such a trip would be with a typical almost teenager...

Last Friday after Janey got home from school, we drove out to get her brother Freddy in upstate New York, at Skidmore College where he was finished with his sophomore year.  It's a trip Tony could and has done alone, but I really felt like I needed a change of scenery, so we reserved a hotel room for Friday night.

Janey was completely happy during the whole five hour drive out (it would be three hours without any stops, but we don't roll that way).  We played music the whole time, and she rocked out to a huge variety of tunes.  I love how open she is to music, to songs she hasn't heard before and songs she's heard a million times.  If it has a good beat and is interesting, she likes it, and lets us know (as she does if she doesn't like it!).  She isn't influenced by what's cool, or not cool, or what we want her to like---she likes what she likes (which was proven by the fact one of the songs she got really into on the drive was sung by Justin Beiber, and our feelings about the song didn't matter to her!)  We all discovered we loved a song by The Lemonheads, Janey let us know she's not into Madonna, we all liked the various Nicktoons songs my Slacker Radio app picked, we had a blast.

In awe of Freddy's dorm

When we got to Skidmore, Janey was just about overcome with excitement.  We don't go a lot of places at night, being very early to bed people, and getting out in the parking lot of Freddy's dorm, seeing his dorm tower and the streetlights, taking an elevator up to his room, trying on a cape that was in a box of give-away castoffs in the dorm hall----it was like we had set her up with the ultimate night of fun and thrills.  I kept thinking about how I would have felt about such a trip at her age, or how the boys might have felt.  It's fair to say I wouldn't have been quite so excited over a long drive with my parents to pick someone up---one with no real recreation or treats involved.

The thrilling elevator ride!

Janey loved the hotel, slept well, had fun at the breakfast, was happy in the car, where she several times looked to Freddy and said "It's Freddy!" in pure delight he was with us again, requested french fries but did fairly well waiting for it to be 11 am so they would be available at a rest stop McDonalds---she was great for the ride home almost all the way, until literally the last few minutes when she was sick of driving, as were all of us.

It's funny---it somehow sometimes seems wrong to delight in the GOOD that having a child like Janey brings, and it shouldn't be.  There is much that is good about having a 12 year old that still adores us, that can get excited without self-consciousness about little things like an elevator ride or a Happy Meal, having a child that wants little more in life than family, music and fun.  When Janey is happy, we are all happy, and I am going to try to stop thinking of that with an asterick, thinking "Yes, she's happy, but although being a typical preteen might be tougher, she is missing so much..."  Well, we all are missing something.  What she is missing might be different, but what makes her happy is different too, and we can delight in her happiness without thinking of it as a "despite of" thing.  We are so lucky to have you as a daughter, Janey.

When Janey was diagnosed

When reading accounts of parenting children with autism, the moment that the family receives the autism diagnosis is almost always written about in detail.  I was reading a few such accounts lately, and it struck me that, although Janey being diagnosed was certainly a fairly major point in the timeline of our lives, I don't remember it as being quite as stark a blow, as frozen in time a moment as often seems to be the case.  I didn't remember the date until going back to the first entry of this blog---it was Saturday, December 8th, 2007.  Janey was three years and almost four months old.

I started thinking tonight about that time, and it became clear to me quickly why it seems a bit of a blur in memory.  It was a horrible time, in many ways---I can say Janey's diagnosis was one of the least troubling parts of the months around that time.  The month before, in November, I had been put on a jury of a murder trial, an incredibly sad murder of a four year old boy.  It lasted three weeks, putting a huge strain on everyone emotionally and logistically.  Janey had started 3 year old preschool in September, half a day, at the school the boys had both gone to, as a regular, non-special-ed student.  So someone had to get her in the middle of the day at school.  Tony missed a lot of work.

While I was on the jury, in the middle of the testimony phase, my sister's fiancee died suddenly.  He had been recovering from heart surgery related to Marfan's Syndrome, and it looked like all was going to be okay.  Getting the call that he had died---I can't even think about it, ever, without crying. The sadness I felt for my sister, and the incredible frustration that I couldn't even go to the funeral, couldn't be there for her as I wished I could without disrupting a huge trial----it is with me still.

Other factions were stressing us strongly during this time.  A very close friend from childhood was going through a family crisis that I won't get into except to say it was the worst family crisis you can possibly imagine outside of a death.  The boys were in 5th and 7th grade, both having a somewhat tough year.  Tony's office was on the verge of closing, and he was looking for a new job within his organization.  And in the background, always, there was the creeping realization that something was happening with Janey, something terrifying.

Janey, about a year after diagnosis

I wish I could remember more about the year Janey was two.  If I had known it was the last year she would talk easily, the last year I'd have a conversation with her, the last year she'd seem truly happy---well, I can't write much about that.  I just wish I'd recorded every minute of that year.  Then again, maybe it's good I didn't.  I have never been able to watch the few videos we do have.

The August before Janey started preschool, we took our three week cross country driving trip.  I've written about that before.  I had started noticing some signs of withdrawal, of odd behaviors, in Janey that June, but it was during the trip she seemed to slip further away.  The day she started school, I asked the special ed teacher in the room (her school was an inclusion school, with a regular and a special ed teacher in each room) to let me know if he had concerns about her.  It was, of course, during the middle of the trial, on an afternoon we had off, so I was able to get her at school, that he told me he did have concerns---quite major concerns.

And so---we got on the fast track to have her seen at a clinic.  She was evaluated (after I filled out realms of paper and did lots of phone interviews) by a developmental psychiatrist and a developmental pediatrician.  And that was the day, that Saturday, that they told us she was autistic.  We got a formal report later on, but by that point, they didn't need a lot of time to see what was pretty obvious, so they told us the same day they saw her.

I don't remember the rest of that day.  I don't remember crying, although I'm sure I did.  I don't remember what we did after the visit.  I don't remember much.  Maybe that is why I started the blog, three days later, to start recording what was happening, to not let it slip away like the first three years of her life seem to have in my mind.

In some ways, maybe it was good that her diagnosis came in the middle of such a stressful time.  Maybe it let us not focus on it.  But I think it also didn't let it quite sink in.  For a variety of reasons, I don't think I truly believed it.  I think I thought we'd have some tough years, sure, but I think there was a part of me that felt it all was a mistake, that I'd play along but not really buy into it all.  Maybe that was my way of coping.

I'm going to write soon about what I wish those early days after her diagnosis had been like, and what I'd do if I knew someone going through early days like that.  But for now I will stop, because I want to come back to the here and now.  I'm glad many years have passed from that time, and our lives are calmer.  I'm glad I will never have to relive 2007.  I'm glad to be here, in 2017, living today's life.  Very glad.

Daytime Bedwetting, Crying, Guessing...

Toilet training.  I'd say I'm an expert on the subject, having been training Janey for about 10 years now, but that's a case where the longer you've worked at it, the less of an expert you probably are.  

My dear friend Michelle and I talk on the phone quite a bit.  Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey.  She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.  

I used to think that there would be an endpoint with the whole potty-training deal.  There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't.  It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.  

Right now, at age 12, Janey almost always uses the toilet for bowel needs.  That is wonderful.  I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.

For urine, Janey uses the toilet in some circumstances.  She wears underwear to school every day, and rarely has an accident there.  Out of the house in general, she does very well.  On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident.  Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes.  At home, though, it's much more of a chancy thing.  I'd say she uses the potty about 50 percent of the time for urine at home.  it's the other 50 perfect that is very, very tough.

For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home.  I'm not talking during sleep here.  We put her in two pullups at night, and we probably always will.  I'm talking when she's awake.  She will go over to the bed and wet it, in the daytime.  As you can well imagine, we are not huge fans of this.  We have tried everything we can think of to discourage this behavior.  We take her to the bathroom on a very regular basis, and try to get her to go.  We do everything we can to keep her off her bed when she might need to go.  We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it.  This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.

This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting.  We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep.  I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.

Coincidence or not, Janey has been doing a fair amount of crying this week.  She cried a lot after school last night, and she woke up crying this morning.  Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?"  Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it.  Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?"  The answer was clear.  I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying.  I don't know why she does what she does with the bed.  But I know that I can control how I react to it.  I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her.  But if she does do the daytime bedwetting, I can deal with it in a matter of fact way.  I can keep myself from getting angry.  I can just accept that for now, that is how things are.

I told Janey "I'm sorry I got upset about you peeing on the bed.  I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up.  You don't need to cry about it.  It's okay"  Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something.  And she smiled, for the first time of the day.

I wondered, after Janey went to school, if I was doing the right thing.  Then I stopped myself from the worrying.  I reminded myself, as I've learned to do, that there is no right way with Janey.  There's no book that tells how to parent her.  I'm writing her book.  I don't know how the chapter on toilet training will end.  It might never end.  But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.

Home from our great trip!

I had big plans to blog a little every day while on the road, but I found out I hate writing on laptops---somehow I constantly move the cursor around and then do something which deletes huge chunks of what I've written, and fun stuff like that, so I decided to wait and write when I got home!

Janey and Michelle at the Toledo Zoo!

What a wonderful trip we had!  The best part, the very best part, was meeting Michelle and her family.  I met Michelle through this blog---she was the first person ever to get in touch with me after reading the blog, back when I wasn't sure anyone at all read it!  We've been long distance friends ever since, and phone friends, but I wanted more than anything to meet her and her family in person.  So we set out for Ohio to make that happen.

We drove out at a slow pace.  Although the total trip would have been about 12 hours if we drove straight, we knew we couldn't do that with Janey.  I split the trip into thirds, and we stopped at 2 different hotels on the way out and the way back.  We stayed 3 nights near Toledo in the middle.

Janey happy at a hotel breakfast

Overall, Janey did remarkably well on the trip---better than I had even hoped.  She loves car rides, so that was a plus. She also loves "hotel houses" and swimming, so I was hopeful, but warily so.  But we found that as long as we kept Janey happy, she kept us happy. We listened to only music she liked, and switched songs on CDs right away if she wanted us to.  I love hearing local radio stations, but that was not to be!  Once we were in a hotel for the night, we set up her iPad (wi-fi was a must) and she was able to snuggle her special pillow and watch her YouTube videos just like at home.  We swam at every hotel we could (one had a pool that wasn't open---NOT a good scene!) and we stopped whenever she asked us to.  That made for long days driving, as at points she asked to stop at almost every exit---she learned quickly that saying she needed to use the potty would get us to stop---but we like seeing what's off the exits, so we didn't mind that much!

The amazing Lindsey!

I loved meeting Michelle's daughter Lindsey!  I wish every one of you could meet her.  I have to admit she opened my eyes a good deal to how much a person who is non-verbal can communicate.  I'm not talking AAC or sign language---I'm talking just by being herself.  You knew exactly what Lindsey was thinking, and she has an amazing, unique personality---larger than life!  Tony said she would have been a huge star of silent movies, and he is right.  We got to spend the most time with her the last night, when Janey fell asleep at their house.  Without Janey being unpredictable and loud, Lindsey sat at the table with us for a long time and we had a wonderful time talking, her contributing to the conversation as much as anyone.

Getting to talk to Michelle and spend time with her was a dream come true for me.  Having girls with autism is what brought us together, but I know that if we had met any other way, we would have been drawn to each other just as much.  We have so much in common, and I felt like I was with a friend I've known all my life.  And having someone to talk to about our lives, lives affected by our girls in so many ways, while at the same time being able to laugh and talk books and about our other great kids and anything at all---that was incredible.  We both had a very hard time saying goodbye.  It makes me think about how wonderful it would be to live near so many of you, to be surrounded in "real" life by the great people I've met through this blog.  But I am so lucky to live in today's world, where I can be with you all virtually.

Happy we've stopped at yet another fast food place!

Janey starts summer school on Monday.  It's a little tough coming back to reality here, but knowing we can travel, and having met my long-lost second "sister"---that was a vacation of a lifetime.

Fourth of July

 Happy 4th of July from Toledo, OH!  It's been a wonderful vacation so far.  The best part, of course, has been getting to meet my friend Michelle and her family in person.  Michelle was the first friend I made through this blog, and her support, advice and friendship over the years has meant more to me than I can say.
 
Lindsey is Michelle's 16 year old daughter, a girl who is much like Janey.  What a remarkable and cool person she is!  She is non-verbal, but that certainly doesn't mean she can't communicate!  I think she said more to me in the first 10 minutes I was with her than many people do in a year.  Her facial expressions and postures and attitude are astonishingly able to say what she wants to say.  One of the coolest things was watching her watch Janey have  a meltdown.  She said with her face "I love this!  Janey is giving them hell!  And it's not me---I'm just getting to sit back and watch!  Go, Janey!"

It's been terrific meeting Michelle's husband, too.  Fathers of our girls are the unsung heroes, and Dan is one of them.  Like Tony, he is fully there for his family, and Janey has taken to him instantly.  And Leah and Jacob, Lindsey's siblings, are amazing kids in their own right. 

And Michelle!  I think we could talk forever and never run out of things to say.  She has lived my life and I hers.  The cool thing for me is she's a little ahead of me in the journey, as Lindsey is older.  When she told me that it would get easier with Janey, I knew she really knew.  She gets the meltdowns and the isolation and the frustrations but more than anything, the love we have for our girls---the overwhelming love.

How has Janey been doing?  Pretty well, overall.  There have been meltdowns and arm biting here and there, and when she's gotten restless there have been a lot of walks and car rides, but she has spent a lot of time at Michelle's house, enjoying their hospitality, and we had a great swim this morning, lots of iPad hotel time, and a lot of doing things we do at home, in different surroundings.  It's making Tony and me feel hopeful that when he retires and we can travel even more, Janey will be up for it.

Today we are going to the Toledo Zoo.  One of our dreams for Tony's retirement is traveling around to some of the top zoos in the country, and Toledo's is one of them, so we are very excited!

 Toledo is great!  The weather has been so lovely, dry and warm but not hot.  The big Ohio skies and farms and friendliness make me proud to be an Ohio native, although Maine of course will always be the home of my heart!

I'll write more about the trip soon---I don't like writing on a laptop, so I'll keep this fairly short.  I hope everyone has a wonderful 4th!

Little getaways, now surprisingly possible

This past weekend, we took a little trip to Maine. We stayed a couple nights at a hotel, and got to see my dear Aunt Sarah, my mother's younger sister.  I haven't seen her in eight years, and she hasn't seen Janey since then, so it was wonderful to see her.  What was also wonderful is that the trip was even possible.

A year ago, or pretty much any time in the past eight years, we could not have pictured a weekend trip working at all with Janey.  We basically took no trips during that time, at least the kind that involved a good deal of driving and time in a hotel.  Janey would never have tolerated the drive, and a hotel would have been a nightmare, as she would have been almost certain to scream so much that we would have been kicked out.

The inability to travel with Janey was hard.  Tony and I love travel---not big time exciting vacations, but weekend or a little longer trips, the kind where the biggest entertainment is seeing new places from the car window, where we get fast food to bring back to the hotel, where we see family or friends for a bit and just relax for a while.  We did that kind of thing a lot with the boys when they were younger.  We saw a lot of the Northeast during that time, and had a lot of fun swimming in hotel pools and eating at rest stops.  We wouldn't even have wanted to take Janey to Europe or Disney World or on a plane, but we did long to just be more able to go to see my parents in Maine for the weekend, or something like that.

Tony and Janey on a little stretching legs stop at China Lake, Maine.

Something happened this summer.  Like we often date Janey's autism to the only very big family trip we ever took, a cross-country drive when she was three, we are dating this change back to Janey's long hospital stay from a burst appendix.  Janey seems changed.  There are still tough days, lots of screaming times---we aren't under any illusion that life will be easy-breezy from now on---but somehow, it has become possible to travel a little with Janey.  A big part of it is she now loves car rides, just like Tony and I do.  She's happy in the car for almost unlimited amounts of time, as long as music is playing and we keep moving.  She also, based on this trip and our last trip to take Freddy to college, likes hotels.  When we got to our hotel in Maine on Friday night, we worried about the noise for a very different reason than we would in the past.  We worried her yelps of joy would bother people.  She was overwhelmed with happiness to be in the hotel room.

Thinking about it, it's partly that Janey has changed, but it's also partly that we have changed.  It's sort of like a compromise.  We do what Janey likes, more and more.  For example, the music in the car is all for Janey.  Luckily, she likes a wide variety of good music, but if she doesn't like a song, we don't listen to that song.  We plan our days so that she will be content.  Yesterday, Tony stayed at the hotel much of the day with Janey, doing little drives to get food and letting her dictate the day's pace, while I spent time with my parents and aunt.  We didn't try to do everything with Janey in tow.  Later, we went to my parents' house, but as soon as it was apparent Janey was tired and ready to go, we left.  We all got to do some of what we liked, by making sure Janey was able to feel comfortable and happy.

It feels like a bargain, a trade.  We are getting what we want---the ability to do more of what we enjoy, and Janey is getting what she wants---her needs put first.  It's a win/win---a nice example of a rare win/win in life.  It's making us able to look at the future with a little more hope than we have had in a while, thinking of seeing the country a little at a time, in our own way.  It wouldn't be the two of us, as we daydreamed about years ago---it will be the three of us, and I think we can make that work.

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.

Screams and Smiles

That's the story of the past week.  Between the screams, there's been a lot of smiles.  Or depending on my mood, between the smiles, there's been a lot of screams.

Today, it's the screams I'm hearing.  Janey was up a good part of the night, screaming off and on.  Tony was my hero and let me sleep through much of it.  She went back to sleep, as she seems to like to, left to her own devices, about 8, and slept until 9:30.  I had coffee and a breathe.  Then, awake, screaming.  I gave her a shower, and she seemed somewhat settled down.  So I tried to sneak in a sink full of dishes, just because I like that kind of wild and crazy fun.  I put on music, because dishes are the one time Mama gets to listen to whatever she wants, and what I wanted was some showtunes, which Janey enjoys too.  We had a good time dancing to "The Lonely Goatherd"  But the next song, "One" from A Chorus Line, was not to her liking.  So she had a scream-fest, went into the living room, put on a video, got mad at the video and pushed the VCR and DVD player off the shelf.  They didn't break (they are low to the ground) but she knows very well how we feel about that.  I was at a low ebb and screamed back.  I told her to get on her bed for a time out.  She had a funny look when I said that, almost a happy triumphant look.  She had gotten to me.  I guess every kid like that a little.  I managed to finish the dishes and she only got up from the bed about 6 times, and went back each time I told her to.  Then I couldn't make the time-out last any longer.  So she got up and, just for fun, started screaming again.  That's been our morning so far.  Now she might be gearing up for a nap, which I should not let  happen, but I am going to let happen.

A few days ago, we had a great day going to NH to the camp (Maine talk for a cabin on a lake) of old friends.  I saw people I hadn't seen in 20 or more years, and had a wonderful time.  Janey, for the most part, was good.  They had a couple boats, and she got four boat rides, her favorite thing on the earth, I think.  Everyone was good to her and to us, and she was happy almost all of the car ride, or asleep (2 hours each way)  It felt like a near normal person day, except for having to watch Janey every second and except for the few times she lunged at someone or pulled their hair (which they were so kind about, thank you, Mary!)  We never can quite pass for a normal family, but we can almost pretend for minutes at a time, like when she was sitting in bliss on the boat.

Summer school starts on Monday.  I wish I didn't long for it so much.  I wish I had been able to stick to my original plan and not send her, but I don't think I would have retained my sanity.  I hope it goes well.  She will take the bus, so I won't see much of what is going on.  Which again, I feel guilty about.  But I am starting, a little, now and then, to realize that I do really have to think a little bit about not losing my mind, or my health.  Caring for Janey is endlessly tough.  It really is.  I can tell myself it isn't, but it is.  Seeing her in NH, alongside the adorable 4 year old daughter of a woman I've known since she herself was little more than 4, I was hit a little hard with the difference between Janey and other kids.  Which I am sure anyone who has spent any time with her thinks "How could that not be something she sees clearly every second of the day?" But we all play games with our mind. I think when I really let myself see what a day is often like for me, it's, as I think I've said before, like when cartoon characters realize they have walked off a cliff.  They are fine until they look down.  I have been looking down lately.  I probably have to.  But sometimes I'd rather live in the fantasy world without gravity.

The trip to Maine---a (mostly) success story!

When the boys were little, we did a lot of little getaway trips.  Not a lot of long vacations to real destinations, but quite of a lot of trips where we'd find a cheap hotel deal and spend a few days in a new location, visiting friends or family.  But for the last five years, we have taken no trips like that.  None.  We have not gone away as a family in that time for more than a few quick, close overnight twice.  We haven't been more than 100 miles from home as a family, or gone more than one night.  About a month ago, when Janey was doing pretty well, I decided I very much wanted to try a little trip.  I grew up in Maine, and Maine in the summer is a special place.  I wanted Janey to at least have a day, or even an afternoon, playing outside in the Maine summer.  My parents live in Maine, and I set my goal at a day at their house.  I reserved a hotel about half an hour from them (because close hotels, near the coast, are out of our price range in the summer), for two nights, and set aside 3 days for the trip.  I wanted us to have a full day for travel both ways, although it's about a 4 hour drive, so that if we needed to stop 50 times, we could.  I wanted to have very, very few plans, so that our main focus could be on letting Janey relax and hopefully enjoy the trip.  I felt like if this went well, and she saw that going away could be fun, it would be a good start to expanding our horizons a little.  But if it didn't, it might be the end of that part of our lives for a good long time.

Then came the hell weeks, which you've probably read about here.  I thought over and over about cancelling the reservations.  I thought there was no way that this would work, that her crying would get us kicked out of the hotel, that she would destroy my parents' house, that her behavior in the car would make us unable to drive.  However, once the new medication had shown a little promise, I thought we might as well give it a try after all.

Well, I'd call it a modest success.  The ride up was quite good.  Janey didn't cry AT ALL until the last 5 miles or so!  She did sleep a lot, still tired from the medication at that point, and she wasn't terribly smiley or happy, but she was not crying.  Here's a picture of her at a rest stop...

having some ice cream.  We made it to the hotel well before I ever thought we would---we only stopped about 3 times, as much for us as for Janey.  I was worried how Janey would react to the hotel, but we kept talking up how we were going to go swimming as soon as we got there, and we did...

The pool was only 4 feet deep, was outside and full of bugs and very cold, but we swam!  Janey was fairly happy to swim---not as excited as that sometimes makes her, but happy.  We spent the rest of that day in the hotel room, just hanging out (although I got to go out to dinner with my dear friend Julie while the rest hung out!).  Tony got to watch baseball with Freddy (we don't have cable at home to see it) and Janey got to go about 5 times to the "chips machine", the vending machine, and get chips.  I figured that if that's what meant vacation to her, then getting a lot of chips (which she wasn't really so much into eating, just getting!) was fine.  She also enjoyed pushing the buttons on the elevator.  She didn't sleep at all well that night, though, probably from sleeping in the car a lot, but she wasn't screaming---just wandering the room and enjoying some cable.

The next day, we went to the hotel breakfast and then to my parents' house, and as I had hoped, it was a beautiful day and Janey had a wonderful time outside.  She was able to wander around their big, wooded yard and to walk down their dirt road, and to pick wildflowers and see all the bugs and just enjoy that smell of Maine in the summer.   Here's a few pictures...

I wish she had been more excited or happier---she seemed subdued, but she wasn't crying, mostly, and I think she was partly subdued just taking it all in.  For a girl that loves outdoors, having that much of it just to look at and walk around in was probably almost overwhelming.  She liked a few of the toys my mother had saved for her---here's her enjoying a Clifford book on the deck...

and overall, I felt very happy that I was able to give her that day, a tiny piece of my summers in Maine.  As soon as we were all getting a little tired, we left, while everyone was still in a good mood.  We went back to the hotel, and lucky me got to AGAIN go out to dinner with my friend---another great part of the trip, getting some time to just talk and laugh and be silly with a dear friend!  Janey slept better that night.

Today when Janey woke up, I saw a Janey I hadn't seen in quite a while, and was very happy to see back---a smiling, laughing, energetic, funny girl.  She was in one of the best moods of the summer---singing her song parodies, thrilled about anything we were doing, even little things like going to the hotel breakfast...

just being the Janey in what we call her "precious" mood---one of the times I can't possible imagine enjoying her more.  They are rare, but I had worried the medication might take them away, make her quieter and more subdued all the time.  I love my lively girl when she's a happy lively girl!  

The drive home wasn't fantastic.  I think Janey had had enough of driving, or maybe she was realizing the "jolly holiday" (a term she picked out of a Mary Poppins sing-a-long song to define our trip) was over.  She cried a fair amount, and we stopped less---perhaps we should have stopped more, but I think we thought by that time just getting home would be best.  Here's a picture from one stop, with a moose...

Janey wasn't in the best mood, but she agreed to pose!  

So I'd say overall, a success.  I wish Janey had been happier more of the time, not just not crying but actually happy, but there were certainly happy times, and we made it!  I was able to get some time out, and my parents were able to see Janey and Freddy (this also marked our first family trip without William, as he is at college, and incidentally having a better time than he ever realized it was possible to have, by his reports).  I think we'll try to do it again fairly soon.  It felt good to be a little back on the road again.

On and off day

We drove out yesterday to meet my friend Judy, who I had never met on person before, just on the internet. It was wonderful to meet her. I was worried about how Janey would do, as she was going to meet Judy's 3 year old granddaughter Jamie. Overall, it went well. Jamie was a wonderful talker and very advanced, which is nice to see but also always a little hard to see, but she had an outgoing personality and just refused to take "no" for an answer in playing with Janey. They ran around together, danced together, did well without Janey really talking. It was good to see. But then on the ride home near the end she went into crazy mode. She didn't like what we got for dinner, and wanted "cheesecake" which can mean many things---sometimes really cheesecake, other times little packets of cheese and dipping crackers. She just started screaming for it, and I mean screaming so loud you could not even hear yourself think, and thrashing in her car seat and having one of the worst tantrums I've ever seen her have. I really thought she would hurt herself badly. It was awful. We did our best to ignore it, as anything we tried to do just made things much worse. Eventually she wore herself out and was okay. I think being social tires her out so much and makes her so taxed that she has to decompensate. It was a long drive.

Silence in the car

When we drive home from preschool, Janey never talks. We are all talkers except her. We drove cross country last summer and there was barely a moment without talking. So it's hard, that 20 minutes without a word from her. I chat away to fill the silence. The other day I was tired of it, and just stayed silent too. She didn't notice or care, in fact, she seemed happy about it. I stayed mostly quiet at home, and she played in the driveway for a long time, seeming to be happy I wasn't bugging her with a lot of questions. She says her little things now and then, but if I don't talk, mostly, she doesn't talk. Should I do more of that? Do I just chatter on to fill the quiet for my own good? Does it help her?