Summer update

In no particular order, some updates from our summer so far!

The initial genetic testing came back.  It was the kind of testing that looked for single letter changes in genes, not for larger deleted or duplicated portions of genes.  It showed that Janey didn't have Rett Syndrome, as the geneticists thought she might.  What did come up is a disorder that is hard to figure out the significance of, and which might or might not have anything to do with her autism.  It's a dominant genetic disorder that can cause seizures during sleep of the frontal lobe.  It has once in a while been associated with intellectual disabilities, but not usually to the extent that Janey has.  It can cause other sleep disorders, and she certainly does have very unusual sleep issues, but not perhaps the ones this causes.  The interesting thing is that the testing shows she inherited it from Tony.  Neither of them seem to have ever had seizures, during sleep or otherwise.  I was a bit overwhelmed at the time the report came in and I haven't researched this as much as I eventually will.  It's a very rare disorder---only about 100 families in the world, and we do plan to join a study about it.  But for now, it raises a lot more questions than it answers.

Summer school was...mixed.  The first 3 weeks were great.  Janey was in a sleepy mode, and therefore was more than well rested for school, and seemed to thrive.  But starting with week 4, she went into no sleep mode, sleeping very little each night if at all, and when she was awake, she wasn't in a good mood.  We started getting calls from school every day.  If you've ever been in that place, you know it's very tough waiting for that call, and hearing the latest about what has gone wrong.  I fell into a very low mood for a few days there, remembering all the toughest times.  Summer isn't my favorite time of year ever, and with Janey screaming and crying all day, then heading to school to scream and cry more so we got calls to go get her....it wasn't a good couple of weeks. She was also acting up on the bus to a big extent, and we got to hear about that every day as she got off the bus.  But by the last days of summer school, she had cheered up a bit and the very last day, I guess she was even good on the bus. 

At home, Janey loves to do three things most.  She likes car rides, showers and eating.  We do all we can to give her as much of those three things as we can, but there comes a time around 8 each night when she's had multiple car rides, multiple showers, and she's eaten as much as any person on earth needs to eat in a day (usually very healthy food, but even that has a limit).  When we tell her no more car rides, when we report that the shower is closed, when there is no more food being offered---well, you can guess it's not a happy time.  It can feel very frustrating to try so hard all day long to keep her happy, and then to have her get so angry when we finally just can't offer any more.  I know she isn't really intellectually capable of understanding why we are bothered by that, or that she isn't really being fair, but we are human beings with feelings too, and we can get worn down by her fury.

More and more, we realize Janey really craves, in addition to the three things mentioned above, time to herself, time alone.  And that is one thing we can't really give her, not fully.  When she gets home from a car ride, she likes to play in our long driveway.   And that's fine---as long as we are watching her. We live on a busy street in the city.   She isn't an eloper, and she has never gone into the street, but strangers pass by all day, and it just isn't safe for her to be alone out there. But she tries. She attempts to push us inside the house.  She says "You want to take a shower?", hoping to tempt us inside with what she herself would love.  She sometimes is even more direct, saying "Want to GO AWAY???"  It makes me so sad that she can't have that little thing she wants, to just be alone and play.  We tell her we are just going to be sitting there---we won't cramp her style, but of course that doesn't matter.  When she's in the house, she likes it best if she can be alone in the living room, and we do try to make that happen, but our apartment isn't huge and we do even inside have to keep a  backward eye on her.  I wish she was able to have the freedom she clearly wants.  But I don't see a solution here.

Janey will be 19 in a few days.  It's hard to believe.  In so many ways, she's a delight to us.  Even with my griping here, almost every day brings another great time with her, another funny moment or surprise joy.  Today, Tony took her for Chinese takeout, and they waited in the restaurant for her food.  When someone else's order was called, Janey eagerly jumped up to grab the bag, and Tony had to stop her from walking off with it.  Then she saw someone at a big table that looked like it had lots of room, and she went over to try to sit there.  Both these things were done with her infectious smile and joy in life, and people responded to that, by smiling and laughing and being kind.  There is something about Janey that brings that out, in so many people in so many ways.  It's what gets us through it all.  It's what gives us hope on tough days.  It's been a long, strange 19 years, but boy, does she keep life interesting.

Summer memories

Today was the day I think of as the first day of summer---the first day of the first full week without school.  I will be totally honest and say it's a day I dread.  I've never, ever liked summer much.  I don't like the heat or the lack of routine.  With Janey, a summer day can feel endless.  I am very grateful for summer school, which starts in two weeks.  But today---it was a long day.  Janey screamed a lot, cried a lot, just was very out of sorts.  I felt out of ideas for the whole summer by nine in the morning.

Tonight, looking back on today, I realized something interesting.  Janey knew what the day was.  She knew it was the start of summer.  I realized that because of what she asked for.  First thing in the morning, she wanted to walk to the "ice cream store".  That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat.  We did that.  A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?"  She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine.  Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?"  Again, something we did very often last summer---walked to the train station to meet Tony as he came home.  We haven't done it since last summer.  Lastly, she then asked "Get Chinese rice?'  Yet another thing from last summer---having Tony bring home Chinese food often.

I don't know how it made me feel that Janey remembered all that.  It made me feel sort of guilty, that her summer memories are of such mundane things.  It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken.  It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.

I wish I could do more with Janey in the summer.  But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger.  There are splash parks around, but they are filled with toddlers and preschoolers.  Janey is the size of an adult, and unpredictable around younger kids.  There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school.  Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't.  The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly.  So, much of the time, we stay home.

With that being said, I am hugely looking forward to later this week.  We are taking a trip!  Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on)  I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools.  We are going to keep everything as low key as possible.  I still am not sure how it will go with Janey, but I hope well.  She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!)  So wish us luck in making some new summer memories for Janey.  I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!

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.

Janey is 11!

In many ways, I'm glad to see Janey's year of 10 being over.  It was a tough year, by any standards.  It featured two long hospitalizations---one for psychiatric reasons, one for a ruptured appendix.  Partly because of that, her school year was rough, with many absences and a lot of behavior issues, and not much progress, if any, academically.  However, I look toward Janey's year of being 11 with tempered hope.

Who is Janey, right now?  She's a beautiful girl.  She's getting taller and taller---I wouldn't be surprised if 11 is the year she overcomes me in height.  She's endlessly interesting---you can say that about her!  She is prone to extremes of emotion.  She goes from the highest of highs to the lowest of lows, sometimes within minutes.  She loves the things she loves---certain music, some movies and TV shows, some people.  When she doesn't like something, you know it.  Her smile is something amazing.  Her scream is, too.  She is intense.  She is a force.  She's my Janey.

Learning to be Janey's mother is a process that will never end, I'm sure, but I feel like I've made some big steps this year.  One of the biggest is a step of acceptance---acceptance that Janey is not going to change.  She is who she is, and it's us who have to change.  We can work helping her with some issues, we can try to teach her and modify her behavior, but in large, it's our job to modify.  We have the tools to do it.  She, for whatever reason, doesn't.

Parenting Janey is not something a book or an expert or anyone else can tell me how to do.  I need to figure it out myself, along with Tony and her brothers.  There have been some moments from this past year so tough that I never dreamt, in a million years, that I would have such moments in my life.  I picture a room in the ER full of people trying to subdue Janey after she bit me and started flinging everything in site.  I picture being told Janey's appendix had burst and she needed emergency surgery, right then.  I picture the moment I got the call from her school that her behavior was such they were calling an ambulance to take her to the hospital.  I picture the night we struggled all night to keep her oxygen mask on, as her oxygen leveled dropped to dangerous levels over and over.  After a year of such moments, we no longer are living a life that parenting books cover.

But hope shines through.  The simple phrase "I'll be so proud when you calm down" has worked some miracles lately.  In leaving it up to Janey to calm herself, in praising the end result and not worrying about the reasons for the outburst or feeling we must react in typical ways, she is learning to calm herself, and we are learning something I thought I already knew, to emphasize the positive.  And we are learning to have true delight in the little moments of joy Janey gives us.  Yesterday, she said "Chinese rice, please?", hoping for a take-out treat.  Tony said "Chinese rice?  That's an interesting idea!" and Janey repeated back, in her perfect imitation voice, "Chinese rice!  That's an interesting idea!" over and over, encouraged by our laughter.  We never did get the Chinese food, which she handled, but we had a lot of fun.

I think the biggest change in my mind lately has been in how I see Janey within the family.  We've all realized, from the times she was in the hospital, that she is a hugely vital part of who we are as a family.  Somehow, in the past, she was always separate in my mind.  I thought of it as having two "regular" kids and one "special" kid.  It's hard to admit that, but it's true.  Lately, I have gradually changed that thinking. I have three kids, three amazing kids.  They are my family.  We might not be quite like other families, but no two families are.  All three of them are equally special, not "special".  So, a very Happy Birthday to my Jane---and, an equally Happy Birthday to Freddy, who turns 18 today!  August 16th was a very busy day for me, 11 and 18 years ago today!  And all my love to them and to Tony and William.  You are a family any woman on earth would be proud to have.

Tougher, the same as and better

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

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

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

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

Not Defined by Autism

There's a saying about autism that is very true---"If you've met one person with autism, you've met one person with autism"  I've been thinking lately how the word "autism" can mean very little, even when modified by the sometimes politically incorrect low or high functioning labels.  This fact was brought home to me strongly when I tried taking Janey to a vacation event run by the local autism agency.  It was an animal show---or I think it was, as we couldn't actually stay for it.  After a half hour free play time, which Janey tolerated because Tony came with me and stayed with her every second, all the kids were supposed to sit on the floor near the man showing the animals.  I was amazed that most of them did.  Janey, however, did not want to be there any longer, and showed that vividly by kicking me in the face.  I got the message and we left.  I felt extremely low for that ride home.  If Janey couldn't fit in in a crowd of kids with autism, where in heck would she EVER fit in?

After lots of thinking, I realized that was a harsh conclusion for me to come to.  Janey has a unique personality.  ALL kids have unique personalities.  But in picking "autism" as the word to describe Janey, only a little part of who she is gets highlighted.  She IS autistic---she's been evaluated at least three times and meets the criteria for that diagnoses.  But she's more....

Janey is VERY easily bored.  That fact came alive this vacation week.  Neither of her brothers were around, and Tony worked half days.  Although I did my damnest to keep her entertained, Janey hated this week.  Janey likes activity, movement, noise, excitement.  She doesn't need a lot of down time.

Janey has next to no patience.  If she asks to do something, and I don't do it immediately, she freaks out.  If she wants to snuggle, she wants to snuggle RIGHT NOW.  If she craves a walk to the ice cream store, it has to happen IMMEDIATELY.

Janey has a hair trigger.  This relates to the first two.  If Janey is bored, and if she wants to do something to relieve that boredom, and I don't do it immediately, she lashes out.  I was hit over and over and over during this vacation week, almost always because I wasn't doing what Janey wanted to do.

Those are three mostly negative facts of Janey's personality.  Here's some positive ones...

Janey enjoys being out and about.  She doesn't have a real craving for routine.  This is where the standard view of autism doesn't much serve Janey.  Her happiest day this vacation was when Tony and I took her for a long drive to parts of the state we hadn't seen before.  Just seeing the scenery, stopping here and there for a bite to eat or a run at a scenic turnout, resulted in a super day.  She did get mad at one point when she wanted her shoes off and that didn't happen immediately, but overall, the day was a dream compared to the other vacation days.

Janey is passionate and enthusiastic about things she likes.  If you have a view of kids with autism being self-contained, you aren't picturing Janey.  When music comes on that she likes, her excitement and joy are completely infectious.  She goes into a state of total happiness.  Last night, she discovered "The Pink Panther" on YouTube, and her hysteria over the antics she was seeing was something else again.  She can get excited beyond belief at pesto, at Chinese food, at TV shows, at seeing someone she loves.  She loves things hard.

Janey has a wonderful sense of humor.  She likes nothing better than the whole family being together laughing at something.  One way to get her out of a bad mood is to put on a funny show or movie we all like and laugh loudly at it.  She says things that I think are designed to crack people up, and she loves it when people laugh.  The other day, at the ice cream store, she got chocolate milk instead of her usual ice cream.  The clerk commented on that, and Janey said "I totally need a drink!"  The whole place fell apart laughing.  I swear Janey knew what she was doing.

I imagine that every parent of a child with autism could write something like I have just written---aspects of their child that define them, outside of the ones that autism dictates.  It's why what works for one child with autism might very much not work for another one.  It's why I have a hard time sometimes with advice that is general, advice about "what works for kids with autism" Janey's particular blend of attributes makes her who she is, not her autism.  She's a challenging kid----there's no question about that.  But I don't think it's her autism that makes her challenging, any more than it's her autism that makes her such a firecracker.  She's Janey.

Just the discouraged facts

I spent quite a bit of time this weekend writing blog posts that I then decided not to publicly post.  I was feeling quite low, and I had to remind myself that there is a difference between a diary and a blog.  The posts I wrote were more like diary entries, and I will save them for myself.  But I did want to talk about how things are going, and I decided to try to write just the facts, the narrative without much commentary or annotation, about some of the weekend.

On Sunday morning, Janey was restless as soon as she woke up, wanting to go outside.  We took her out as soon as it was light.  It had snowed some on Saturday, and she loves playing in the snow.  We played for a while, and then decided to take a ride, as I was feeling housebound.  We drove around a bit aimlessly, which we all usually enjoy.  Janey asked for donuts, and we got her some, and I asked for a Starbucks treat, and we got that (although Janey drank much of mine)  We were feeling cheerful and upbeat looking at the pretty snow scenery.  Then Janey asked for crab rangoons.  We told her that the Chinese restaurant wasn't open until much later, and Chinese food wasn't in the plan for that day.  She was displeased.  She was so displeased she reached forward, stretching the seatbelt, and hit Tony hard while he was driving (we have a very small car).  He stopped, told her in no uncertain terms she was never to do that again, and waited until she seemed to have calmed down.  Then we drove home, as she screamed.

Once in the house, she continued to tantrum for a long time.  As she did, Tony and I talked about our discouraged feelings, how things seem to be going downhill.  It was the first time I think we both together realized that we might need to work on a goal of getting Janey help long-term, and of what that might mean.  It was a hard talk.  We realized we are slowly coming to terms with the fact that Janey's current situation, both at home and school, might not be ideal for her.

Later in the day, we asked Freddy to watch Janey for a bit so we could both get some chores done.  He did a wonderful job, singing and dancing with her to a song they had made up.  Freddy realized the tune was that of an actual song, and found the song on YouTube for Janey to hear.  Janey didn't like that idea, and let Freddy know that by hitting him in the face, hard.  He said to her "Why would you do that?  I was being very nice to you!"  It's a question I often ask her, in my mind.  I took her to time-out, in our current time out location, the bathroom, which in our house is away from everything in the back (it's an old, old house and the bathrooms were a later addition)  I told her why she was there and gave her time to calm down, which she did, quickly.  So quickly and so cheerfully that I wondered, as I often do, if the time-out actually is something she aims for.  However, there is really no other alternative, and it at least gets her away from the hitting target.

Janey went to bed at 7:30, a little later than usual.  Since she's been home from the hospital, she has slept through the night every night, which has been incredible.  That is, every night until last night.  She woke at 12:30 am, and that was the last of sleep for her.  Tony tried to keep her from waking me, but I woke anyway, and stayed with her a few hours so he could sleep.  When I could no longer keep my eyes open, he took back over.  We did everything we think best to do when she won't sleep---no TV, no giving in to food demands or other demands, just quiet darkness.  She did what SHE thinks best when she can't sleep---endlessly asked for videos, music, food, songs---and paced aroudn the house reciting things.

We sent her off to school this morning.  I wrote her teacher an email saying she might be tired, but I doubt she will be.  She isn't usually, after nights like that.

It's supposed to snow tonight, tomorrow and into Wednesday, what is being hyped as a blizzard to end all blizzards.  I am not ready for it.  I am not ready for no respite for days, for possibly no electricity, which Janey does not understand, for not being able to have her play outside, for the whole bit.  I am tired, physically and emotionally.  I am very, very tired.