Mostly Sunny---a Janey report

Sometimes I miss writing more entries in this blog!  But other times I know I'm writing less because life with Janey is less intense than it used to be.  Still, I plan to continue this blog as long as I'm around to write it.  It's interesting and cool to think of the girls that are growing up along with Janey, ones I met through this blog when she was just three and who now are teenagers or young adults, and it's also great knowing some families with younger girls (and boys) are able to at times get a glimpse of what growing up as a family with an autistic member is like.

So, how are things with Janey?  Mostly sunny!  High school is off to a very good start overall.  We went to an open house a while back, and got time to talk a lot to Janey's teachers.  She has four teachers, with one being her homeroom teacher.  The rooms are all connected, and the kids move from class to class within the connected rooms.  Her teachers all seem incredibly good.  It's just amazing to us always what great teachers Janey has had.  It's wonderful hearing them tell stories about Janey.  You can tell they get her, and that they like her!  That means everything to me.  Lately her homeroom teacher has been sending us pictures of Janey at school along with reports.  I love seeing the pictures!  It's so cool to get to see Janey's days that way.  With the rise of smart phones and having a camera always around, I hope more teachers are sending pictures to parents, especially to parents of minimally or non-verbal kids.  A picture really is worth a thousand words.

A few weeks ago, Janey had a tough week.  She cried all day for about a week, and did the same at school.  Even coming in the middle of a long great run, it was very upsetting.  I think a lot of you can relate to how we flash back to the worst times so easily.  It's not Tony and my default thought "Oh, she's been happy for a long time and she's be happy again soon!  This is just a little glitch!"  Instead we think "Here we go.  It's going to get worse and worse and worse.  She'll probably end up back in Rhode Island (where the psychiatric hospital was that Janey spent time in when she was 10)"  I think it's a kind of PSTD.  It's very hard to take a step back and just think "Let's ride this out and see what happens".  But in this case, after the awful week, Janey suddenly became happy again.  She got off the bus one Friday afternoon and was happy, and has been happy since.  I need to try to remember that!

The other night, Janey wanted to watch a certain Angelina Ballerina.  Hulu and Netflix constantly take Angelinas off and on, and it's frustrating.  To buy an hour long episode often costs about $15---to have it permanently to watch.  Janey wanted Shining Star Trophy, which has been one of her favorites for a long time, but it wasn't available and I didn't want to spend the money.  We are being very careful with money now that Tony has retired early.  So I said no.  Janey threw a fit---screaming and crying and flinging herself around.  This was after the tough time had passed, and she was so sincere in her sadness and anger I thought to myself "What the heck?  What does she ever ask for, anyway?" and I bit the bullet and bought the show for her after having said no.

Janey at school

Later that same evening, a very interesting thing happened.  I told Janey it was bedtime.  She wasn't pleased.  Usually she'll just get up over and over if she doesn't want to sleep, but this time, she looked at me for a minute as if she was thinking something over, and then started to scream.  Somehow, I knew right away this was a different scream than I've ever heard before.  It was fake.  It had a whole different tone to it. 

To be honest, I was thrilled.  It was the first time EVER I have seen Janey consciously throw a fit when she wanted something.  Other times, she's certainly thrown a fit, but it's the much more common fit, one of not having the words to explain, one of pure unhappiness.  This wasn't that.  It was a deliberate thing.  I have no doubt about that.  I said, calmly but firmly, "Janey, it's time for bed.  Turn off the TV, put down the remote and get in bed"  And she gave me another long look, as if deciding what to do, and then did just what I asked, quite cheerfully.  You could almost see her thinking "Well, it was worth a try"

It's so cool to see that Janey is still developing, still learning, still maturing.  It takes her longer than most kids, but she does make progress in so many ways.

High school doesn't require uniforms.  When I see Janey dressed in school clothes, regular teenage girl clothes (although of course ones I pick out, but I do try to dress her in clothes her peers might wear), it sometimes takes my breath away.  It's funny---I can remember 15 so well, and having a daughter that age---it makes me think of how much she is her own person.  Like everyone else, she is different than her parents, not just because of her autism, but just because she is who she is.  I am so proud of her.  I look forward to watching her become an adult.

The Dance!

Last Thursday night, Janey's school had a dance for the junior high school students.  Her teacher encouraged me to take Janey to it, and I decided to.  If there is anything in this world Janey enjoys doing, it's dancing.  It combines jumping around and music and laughing, all favorites of her.  And she's good at it.  She picks up moves from watching dancers on TV, or just figures them out on her own.  She's approximately 1000% better a dancer than I ever was.

Janey and her wonderful teacher at the dance

I tried to dress Janey up more for the dance, but she knew what she wanted.  She was happy to wear a dress (the one she wanted was probably too short for school, but she let me put a skirt under it), but she drew the line at fancy shoes.  She wanted her old, dirty Crocs, and I gave in.  I tried to get her to wear a necklace, and put all kinds of them on her to try, but she wasn't interested.  The aide at school that does Janey's hair much better than I can almost every day did a nice 'do for her, and Janey left part of it in at home after school, but she won't let me put in any fancy barrettes or anything.  So---basically she was like most teens would be when their mother tried to tell them what to wear.

Tony and I got Janey to the dance right on time, and found that most of her class was already there too!  That was great.  A girl in Janey's class greeted her, looking lovely, and it was a lot of fun once we got into the gym to see other of her classmates all dressed up.  This dance was for all the junior high kids, not just those with autism, and gradually more of the regular ed kids came too.  They had a supper, one that usually Janey would love (pizza, chips and soda!) but Janey was not in the mood to eat.  She was in the mood to DANCE!  She danced from the second we got in the room.

Tony and I had pretty much decided to sit on the sidelines and be ready to get Janey if she got ready to go.  The dance was from 6-8:30, and Janey generally goes to bed around 7 or 7:30, so we weren't sure how long she'd last.  But Janey came up to us after only about 20 minutes and said "Want to go away?"---pushing me toward the door.  I got the message loud and clear---we were cramping her style.  I don't know if she noticed the other kids mostly didn't have parents with them, or if it was just her usual dislike of her separate worlds of school and home mixing.  I asked her teacher if it was okay for us to go sit in our car in the parking lot, where she could text us as soon as Janey had had enough, and she said sure.  I adore her teacher!  She is so upbeat and looked so happy to just be there with her students.  Special ed teachers are some of the most amazing people on this earth.

Janey joyfully dancing!

Tony and I barely knew what to do alone in the car.  We played with our phones, talked, napped and marveled at the time going by without a call.  Finally, at around 8, Tony went in to get Janey or at least see how she was going.  Just as he got out, I got a text from her teacher that she was ready to go.  She had danced for 2 hours straight, and Tony said they told her that she got upset at one point when the DJ took a break, so they had to put on some more music!  She was so happy in the car going home, and she certainly slept well!

The dance is a perfect example of the kind of inclusion I wish there was much, much more of.  It's a "regular" event, something kids of Janey's age do, and including Janey and her classmates did involve I'm sure some extra supervision and planning, but it worked.  I think many more events could be make accessible like this one.  If Janey had someone to keep an eye on her and give her a break when she needed it, she could do many things---go to camp, go in the city and hang out, go to concerts, be part of teams---lots of things.  And I think it would cost less money and resources than it would to set up "special needs" events. It would benefit kids like Janey, and it would benefit the other kids, in seeing that Janey and others like her are not that different than them. 

You might say---why don't we as parents just take her to all those things?  Well, a couple reasons.  One, Janey showed herself at the dance.  When you were in your teens, would you have wanted your parents with you at all times?  Unless you are quite unusual, probably not.  And...we are tired.  Every single moment that Janey isn't in school, she is with us.  Always.  Tony and I getting to just sit in that car---it's the most time we've had alone in a LONG time.

Thank you to Janey's school for holding the dance, to her teacher and her aides for being there, and to Janey---for delighting us with her dancing, her enthusiasm and her joy.

What the AAC consult said and what I think

At Janey's IEP meeting, I requested she be evaluated by a specialist in AAC (Augmentative and Alternative Communication).  She has had access to an iPad with Touch Chat, an AAC program, at school, and we recently got her a new iPad at home and put Touch Chat on it.  My main goal with all of this is to find a way to decrease Janey's frustration with what I think is word finding problems---when she knows in her head what she wants to say, but can't find a way to say it.  I also just wanted to give her another way to communicate, because although she does talk, her speech is limited.

The consult was done about a week ago, and I got the report this week.  It was a good report---thoroughly done, and I felt the woman who did it got a pretty clear picture of Janey's speech as it stands now.  Her conclusion?  That AAC apps are not something that will help Janey's speech, that in fact, they actually distracted her from communicating functionally.

I was not totally shocked by this conclusion.  There's a couple reasons for that.  One is that for years, I had sort of thought the same thing.  When I had downloaded test versions of several systems like Touch Chat, Janey had no interest, and in fact really seemed to not like the programs.  She even said one time, when I said something like "this can help you talk", a very clear statement "I CAN TALK"  The other reason is that I have been told through the grapevine that the powers that be in the school system (not the teachers or therapists, but the higher-ups) never want to say kids will benefit from AAC, because then they have to pay for iPads or the like.

However, I have to say I don't think I agree that AAC is not a useful tool for Janey.  The main reason the woman evaluating Janey concluded it wasn't is that although she can navigate the system and she show an interest in exploring it, she isn't using it to communicate.  My answer there is---Yeah.  That's why I would like her to get HELP with using it.  It seems like what is being said is something like "She shows she could use it, and she shows an interest, but she doesn't already use it to communicate, so we aren't going to recommend teaching her to communicate with it"  That seems like saying "well, this kid has the capacity to read, and is interested in reading, but she doesn't read yet, so we won't teach her"  It just doesn't seem to make sense.  And isn't exploring a way to learn?  When babies learn to talk, not every single utterance is for communication.  The tester noted that Janey kept pressing the "stop" and "go" buttons, over and over, without a break.  Maybe she was figuring them out?  Maybe she wanted to learn them by repetition?  Maybe she was just having fun with them, and what is wrong with that?

Also, Janey DID, in the presence of the woman doing the evaluation, communicate with Touch Chat.  In the report, she said Janey navigated through a few levels of the application to say "Eat Goldfish Crackers"  However, the reports said that the tester didn't have any edibles with her, and it didn't seem to bother Janey, because she didn't seem to be asking for something to eat.  Now, just exactly how did the woman doing the test know that?  When Janey used the device to say something, why was it assumed she wasn't really saying what she was saying?  I do know the impulse to think "She doesn't really mean that".  For example, at home, Janey has quite a few times gone through several menus to make Touch Chat say "I don't want to wear white.  I want to wear orange"  Because Janey has never, even either shown she knows colors or objected to any certain color being worn, my first impulse was to just think she was playing around.  But I realized that's a pretty big thing to assume.  Maybe Janey never had a WAY to tell me that before.  Maybe she really does hate white clothes.  Maybe she wants more orange in her wardrobe.  No matter what, it seems pretty presumptuous to give someone a way to communicate and then when they do, to assume it means nothing.

To be fair, I really am not sure myself if AAC is going to help Janey with communication, and I don't know if Janey wants to use it or not.  After the initial few days with the Touch Chat (and Proloquo) at home, Janey has been rejecting using them, at one point very pointedly by means of hitting me in the face (I made her stay on her bed and not have TV for a while, but I left the Touch Chat out for her in case she wanted to speak ill of me on it!)  But I think she deserves a chance.

The good part?  Janey's wonderful teacher agrees with me.  Today, I sent her new iPad into school, and the teacher is going to update Touch Chat with things like the names of her classmates and with phrases they working on.  She is going to continue to make it available at school, and we will continue to make it available at home.

I'm trying not to get discouraged.  But at times, I do.  It has seemed over the years this same kind of scenario has played out a lot.  I am told there's some kind of help available.  When I actually decide to try to get that help, it's not actually available in Janey's specific case.  This isn't quite like that.  Nothing stopped us from getting Touch Chat on our own (and I'm glad we did, because if we had wanted to get it paid for by the schools, we would have been out of luck).  We are so, so lucky that Janey has a teacher that believes in her and works closely with us to coordinate our efforts.  But still---it feels often like a theme.  Janey just doesn't quite fit into any program.  She's not "high-functioning", as the music classes we looked into required.  Special Olympics, while friendly and welcoming, was not at all aimed at kids like her.  And now, her particular combination of being able to talk some and not being instantly inclined to communicate through technology---she isn't quite right for AAC either.

More and more, I realize there just isn't a lot out there to help.  And more and more, I appreciate the hands-on school people, the teachers and therapists and aides and all that don't say "she's not quite what we are looking for" but instead just accept her and work with her and love her.  And that is what we will keep doing at home, too.

Sneakers with a skirt

This morning, I put Janey in a skirt.  As I put on her sneakers with the skirt, I had one of those crystal clear flashbacks.  I was in 7th grade, like Janey, and I had worn a dress to school.  With it, I wore sneakers, Keds kind of sneakers that were floral.  At recess, a bunch of girls snickered, and one said to me in the classic "I'll going to tell you the truth even if it hurts" type way, "You really aren't supposed to wear sneakers with a dress or skirt.  I think they look fine, but other people think it looks really dumb"  I hadn't thought of that for many years.  It wasn't any huge deal---it was the 7th grade type of girl stuff, which I am sure I dished out as well as took---but it stopped me short for a minute as I recalled it.

In many ways, Janey's world and the one I lived at her age don't have many interacting points.  She doesn't live a life which is in any way at all like most 13 year olds in 7th grade.  That makes me sad, often, but I don't think it makes her sad.  The last year or so, most of the time she's seemed pretty happy with her life.  We've fallen into a routine that works for her.  She knows the steps to get ready in the morning for school, she gets eagerly on the bus, she comes home and we go to get a snack at the store, she watches some TV, Daddy gets home, we eat supper, Janey and Daddy go for a car ride, they get home, we get ready for bed, she goes to sleep.  That's her days.  On the weekend, more TV, more car rides, more watching Daddy cook, more of the same.

Janey doesn't know you aren't supposed to wear sneakers with a dress.  I guess I didn't either, but she's not going to be schooled in it.  She doesn't care.  She's not going to have many of the small moments of hurt and sadness that the teenage years bring.  She's not going to hear the news and fear from it, not going to have the arching pain of a first crush, not going to have papers or reports or projects due on a deadline, not going to worry about test grades, not going to suffer the lingering sadness of broken friendships.  There is much she's not going to feel, and I have to say---that's not all bad.  When I say I wish she could feel those things, there is part of me that is glad she won't.  Life, typical life, everyday life, has a lot of pain.  

Is it okay that I sometimes rejoice in Janey exactly how she is, that I rejoice in the parts of her that are deeply connected with the autism?  Am I supposed to only feel happy when she is able to simulate normal?  Can I feel happy that she jumps up and down and screams with joy that we say yes to McDonalds?  Can I get teary-eyed at her beauty as she wears the clothes I picked for her, clothes that might not be the style for her age, clothes that are a mother's vision of how I want her to look?  Can I be glad she will always love Tony and me with an innocence that is non-critical, that never tackles the complicated tensions that arise as a child's relationship with parents changes as the child becomes an adult?  Can I look at her, waiting eagerly for the bus, in her skirt and sneakers, with her hair done inexpertly by me, and feel joy in exactly who she is?

I hope I can.  

A wonderful day

Once in a while, everything aligns and there comes a day like yesterday, a wonderful day for Janey and for us.

The first special treat of the day was seeing Janey see her brother William.  William is a junior in college, and Tony went to pick him up and bring him home from Christmas while Janey was asleep last night.  First thing in the morning, we took her into his room.  It took her a minute to register she was really seeing him, but once she did, she was thrilled.  She hugged him, over and over and over, backing up after each hug to look at him with a huge smile and total delight.  

Soon, it was time to dress Janey up for the next treat of the day.  A friend very, very kindly gave us tickets to see an autism-friendly performance of The Urban Nutcracker, an updated version of the classic ballet.  I didn't tell Janey about it until it was time to get dressed.  The part she might have been most excited to hear was that my friend Maryellen was going with us---one of her favorite people in the world.  I dressed Janey up in a dress with a sparkly skirt, and tried to manage her hair---it's at a hugely awkward inbetween stage while we wait for it to grow out.  She looked pretty anyway!

Janey was extremely cheerful as we drove to the city and parked to walk to the show.  She seems to love the city, the lights and excitement and bustle.  We need to take her there more.  We got to the show near starting time, and Janey happily sat down to wait.  When the curtain opened, it was to a dancing, stomping, drumming number.  She was overcome!  She almost exploded with happiness and excitement.  She also did something I haven't seen her do out of happiness before---bite her arm.  She didn't bite it hard enough to hurt, but more it seemed almost as a way to keep from screaming with excitement.  I've read recently that sometimes things like arm biting are comforting to kids with autism, and this was one time it seemed that way, a bit.

My happy, sweet girl

Autism friendly performances (at least the two we've been to!) are a great idea.  It's wonderful to be able to relax and know that I don't have to worry about Janey's behavior.  She needs frequent breaks, even when she's watching something she loved, and we got up and took her out several times.  When she came back, she was happy to watch for a while, including at one point for about 20 minutes.  There was a scene with "real" snow" falling on the stage, and Janey said "It's snowing!"  I loved watching her face as she watched the show.

The most special part was during the intermission, when a little boy came up to Janey and said "Hi, Janey!"  It turned out he's in a classroom next to hers at school.  Her reaction was incredible!  She was THRILLED to see him.  They held hands for a long, long time, smiling at each other with huge smiles and laughing.  They even had a little conversation, something that sounded like it was taught by ABA---he said "How are you?" and she said "I am fine!"  Then later he said "What's your name?" although he obviously knew her name!  She didn't answer that, but seemed to love to be asked.  I was in tears watching them interact.  It was by far the most I've ever seen Janey interact with a child her age.  It felt like that rarely seen thing---a Christmas miracle.

After the show, we had a quick meal, along with Maryellen.  The whole time (and indeed the whole day), Janey was happy.  At one point, Maryellen and I said with amazement how we would not have dreamt that a day like this would have been possible a year ago.  

We went after that to pick up Freddy from the bus, also coming home from college.  Janey was very happy to see him too.  On the way home, she said to him "Want to play your game?" by which she meant, we figured out, a game where Freddy chases her and says "I'm gonna get you!"  I was really struck by Janey calling it a game, knowing that it's something associated with Freddy that they do for fun together.  We've never called it a game, and it's cool she understands what that word means enough to use it there.

Freddy, Janey and William

The rest of the day was terrific, too---having all the kids at home, joking around, and Janey in the midst of it, happy and laughing.  It was a day I want to remember always, and reflect back on when days aren't as bright.  It's my Christmas present, one of the best ones I've ever gotten.

The divide

The anniversary weekend of Janey's breakdown last year was overall good---compared to a year ago, it was wonderful.  Most of the time, Janey was cheerful, and when she wasn't, we were able to find ways to make her happy again, pretty much.  However, because that's just how I am, I guess, I'm feeling kind of discouraged today.

A few incidents this weekend are what's on my mind.  Together, they illustrate the difficulties Janey has in learning and we have in knowing how to help her learn.

The first was a "diaper incident" of the worst kind.  I won't get into the details, but you can imagine.  It required an emergency shower, lots of laundry and an hour of floor cleaning.  It was the worst one in years, and it was depressing.

Janey knows how to use the toilet.  And she does use the toilet, when she feels like it.  She can sometimes go for a couple days and use it almost all the time.  But when she doesn't feel like using it, she doesn't.  And there seems to be no earthy way to convince her that she needs to use it ALL the time.  I read a book once about toileting training kids on the autistic spectrum, and I get annoyed every time I think of it.  The main thrust of it was to find what truly motivates your child, and then use the heck out of it to lure them to use the toilet.  Nothing motivates Janey that much.  And I honestly think sometimes she just isn't aware enough of her own body to use the toilet.  If she didn't let on that her appendix had burst, how is she expected to always know she needs to use the bathroom?  That where the divide is---the divide between what we want and reality, the divide created by lack of motivation and lack of understanding.

The other incident, while seemingly small, has been bothering me a lot.  Janey wanted to go for a ride in the car.  We had taken her already that day for two rides in the car, long ones.  It was evening, we were tired, the Patriots were on, there just wasn't going to be another car ride that night.  We told Janey that, but she kept trying.  And trying in non-screaming ways.  I think she felt somehow there was a key that would unlock the ride, something we weren't telling her but that she was determined to figure out.  First, she tried to dress herself.  She often does this, and leaves out major pieces, like all the clothes besides shoes.  When we still said no, she went and found a scarf, a scarf she hasn't worn since last winter.  She presented it to us, saying "This is your scarf!" and seeming to think maybe THAT was what we'd been looking for.

When we still weren't taking her, Janey came over and pointed to herself, and said "MY NAME IS JANE" in a very rehearsed way.  Then she said "Go for a car ride!" with confidence that she'd get the ride, finally.  I am quite sure she was demonstrating a skill that is something worked on in ABA therapy.  She had decided we were looking for her to work for the ride, as at school they have her work for rewards.

Somehow, it's a lot harder for me to see Janey trying very hard to figure out what we want than it is to just have her screaming. It's the divide again.  There is not a way I have found to explain to Janey why she can't do or have something she wants when she wants it.  I am saying to myself here "well, tough.  That's a lesson we all have to learn.  Sometimes the answer is just no"  But if you never, ever understand WHY the answer is no, the world must seem like an arbitrary and confusing place.

So much of what we try to do as parents is based on helping kids to understand the world---why we use a toilet, why we don't go for twenty car rides a day.  But with Janey, her cognitive issues leave many things impossible to explain.  Of course I explain anyway, with the meme of "assuming competence" in my mind.  But she doesn't understand much of it. I can't fix that.  She can't fix that.  We keep trying, but there are some walls, some divides, we aren't going to cross.

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.

Third post of the day!

I've never written three posts in a day before now, and I don't think I ever will again, but I wanted to write about visiting Janey at Bradley Hospital while it was fresh in my mind.  I'm blogging lately for myself as much as anyone, to remember these eventful and challenging days accurately.

The couple pictures here are ones I found on the internet of Bradley.  You can't take pictures there yourself.  The room looks very similar to the common room of the ward Janey is on.  I'm not sure it's the exact same ward, but you can get an idea how nice it is.

We called this morning to make a time to meet with the staff at the hospital, and agreed on 11 am.  We left about 10, thinking the drive was an hour, but it was actually more like an hour and 15 minutes, which was fine, but good to know for the future.  It's a pretty drive at the end, through Providence, a city I've never spent much time in, although both my parents and my sister have lived there at points in their life.  It's great the hospital is south of Boston instead of north of it, as that avoids the horrible traffic that driving through the city always involves.

When we got to the hospital, we had to show ID at the main desk and wait for someone to come get us.  Everything is very, very secure there, which we don't mind at all.  It was striking at Boston Children's Hospital how very UN-secure everything was.  It was only on the weekend you had to show any kind of visitor's badge at all.  Anyone could walk into any room there pretty much unchallenged.  But at Bradley, that would not happen.

The social worker assigned to us came to get us, and we went into a meeting room.  There we talked for a long time to quite a few people---the psychiatrist that has been assigned to Janey, a speech therapist, an occupational therapist, someone I think was a behavior therapist and a few more people whose roles I am not sure about right now!  They asked us many, many good questions about Janey, things like what upsets her, what calms her, what her speech is like, how her behavior has recently changed, what medications she takes, how she is at school, how her sleep and eating area---all that.  Everyone was very understanding and respectful.  The process felt unrushed, unlike anything at all at the regular hospital.

After the long talk, we went to the ward to see Janey.  We had to put our things into a locker---my pocketbook, Tony's jacket, a clipboard---you can't take much of anything in with you.  I did bring in a big bag of clothes for Janey.  Once in the ward, we had to sign in again.  And then we saw Janey!  She looked very cheerful.  There was a relaxed smile on her face we hadn't seen for several weeks.  It was wonderful to see.

The rules of visiting are that we have to visit with Janey in her room, not in the common area.  Therefore, we stayed just a minute, because I couldn't bear to have Janey shut in a room again.  She was happy being active, and it was the middle of their day there.  She was about to have arts and crafts with other kids.  So we put away her clothes, gave her a few big hugs and said goodbye.

The hospital is very strict about talking to other children.  We saw a few boys who are on the ward with Janey, but the rules are that you can greet them if they greet you, but can't talk to them otherwise.  I can see the reasons for this, although I would love to get to know other children like Janey a bit more.

We got the feeling that Janey is already winning over the staff.  They had a few cute stories to tell about her already, including how they did the "Turkey Pokey", like the "Hokey Pokey", and that Janey loved that and did an impromptu solo dance and song after it was over.  I can see Janey being very happy there.  They will keep her busy and give her attention.  I think the question will be more---will this carry over?  Will we get help and ideas and medication changes and so on that will help us once she is home?  I am going to try hard for right now not to think about that, to just be glad she is in such a great place and to try to relax at home.  This is the respite we had wanted.   Not in the way we ever wanted to get it, but I still need to use this time to regroup mentally---between drives to Rhode Island.  I am certainly going to sleep well tonight, and I hope Janey does too, a whole state away from me.

Out of the Blue

We've been on a pretty good run with Janey lately.  She's settled into the school year routine, and has been fairly cheerful for a good long stretch.  It's been nice.  The time change did result in a sleep issue, where Janey wanted to go to bed about 4 in the afternoon and then wake around 1 am for the rest of the night, but that gradually seems to have gotten better.  It's times like this when out of the blue incidents truly can shake us up.

Yesterday here in the US was Veteran's Day, one of the few holidays that don't attach themselves to the weekend, but occur on the same date each year.  So we had the weekend, and then a day of school and work, and then a day off.  That is never a good scene with Janey, but she did fairly well yesterday.  Daddy was home,which is always a plus.  She was very eager to get out of the house, and we went to a few of her favorite places---Whole Foods for some "ham", which is actually a hugely expensive kind of salami she can always find there, and ToysRUs just to walk around and look at toys and find the few toys she already owns and play with them, to the exclusion of the millions of others toys.  So a typical day.  She slept fairly well, and we were looking forward to this morning, getting back in the routine.

All I can think of is that Janey felt today should be a weekend day.  After all, yesterday felt like a Saturday, albeit a strange Saturday after a one day week, so today should be a Sunday.  When it became evident I was trying to dress her for school, she went ballistic.  Every piece of clothing I tried to put on, she violently took off.  She arched her back and screamed at the top of her lungs "DADDY!  DADDY!"  So Daddy came in and tried to dress her, with similar results.  She is strong, and if she doesn't want to be dressed, she doesn't get dressed.  For 10 minutes, we struggled to get her into her clothes.  The screaming was deafening, she flailed out over and over, she was in a fury.  She tried to hit us, she lunged at us, she hit her own head over and over.  Finally, I think she just wore herself out, and we managed to get the clothes on.  Just in time, as I only was able to quickly brush her hair and teeth before the bus arrived a bit early.  I hope very much she stays calm for the day, but who knows?

I took a deep breath after she was on the bus and thought about the whole incident.  I tried to tell myself she's been quite good for weeks now, and that I should not be so bothered by the tantrum.  But I was.  I think it's the out of the blue nature of these fits that makes them so tough.  She goes from calm to absolutely 100% fury and fight in a matter of seconds.  The mind and body have trouble adjusting to that.  And I can imagine how it feels for her to feel that out of control.  The intensity of these episodes are such that I think in most childhoods, they would be something that would happen only once or twice, and be remembered always.  But with Janey, and with many kids like her, they happen often---not on a regular schedule you can prepare for, but suddenly.  It's like if a day was perfectly sunny, and suddenly a tornado touched down and ripped your house apart, and then lifted and was gone, leaving you stunned.

It's sudden explosions like today that make it  hard to ever totally relax as a parent of a child like Janey.  A day can be perfect, but there is always the knowledge it all can very suddenly blow up.  It causes a stress that never completely goes away.  It is a drain on optimism.  It must make life for Janey, even more than for us, feel like a walk in a minefield.

Sixteen non-sentimental autism truths

No trips to Holland here.  No Hallmark moments.  No miracles.  No breakthroughs.  No shiny rainbow sparkly sentiments.  Just the truth (as I see it)


1.  You can get by on very, very little sleep if you have to.  Coffee helps.

2.  Don't worry too much about what your kids eat.  I can say from experience kids can eat food off the floor, bites of paper towels, duck sauce, pickle juice like a drink and random car crumbs---all in the blink of an eye when you turn your head---and be just fine.

3.  Kids' videos are boring.  Even the better ones are boring after you see them 100 times or so.

4.  You can learn to clean up "toileting accidents", the kind that would make most people sick for days, with barely a thought after doing it for five or six years.

5.  Don't get too attached to any of your kid's clothes.  They will be chewed on, stained up and ruined very soon.

6.  The things you dread the most will often turn out to be the easiest to deal with.  The things you never thought would be a problem will very often become huge disasters.

7.  People like to stare.  They love to look at any child acting odd.  They don't try to hide it.

8.  There will be a point at some time in your life when you will feel like punching someone for talking about their child's C in math or failure to make the elite sports team.

9.  You will argue with your spouse about petty, stupid, meaningless things, and that argument will turn into a screaming match.  You'll do this because you can't argue with your autistic child, and goll dern it, you need to argue.

10.  You will have very little social life as a family.  People don't invite you back when your child screamed for hours last time you visited.

11.  You will look forward to the first day of school like 10 Christmases combined.

12.  You will have daydreams of your child asking for every toy they see at ToyrRUs, because that involves talking and having typical child wants and desires.

13.  You will at one time or another buy something overly expensive (a therapy toy, an app, a supplement, a piece of electronics equipment) because you've read about the wonders it does for autistic kids.  You will wish that money back.

14.  You will eagerly analyze anything in your child's backpack for the slightest hint of what they did all day at school.  No matter how much information your child's teacher gives you, it will not add up to a tenth of what a typical kid tells you about their day, even if the typical kid is a surly teenager.

15.  Birthdays will be tough.  People asking you what grade your child is in will be tough.  Seeing what other kids the same age as your child can do will be tough.  Heck, a lot of things will be tough.

16.  You will delight in accomplishments that most parents wouldn't even notice.  You will be in tears of happiness over words or gestures or smiles that typical parents would take for granted.  You will have moments when you realize that the child you have is perfect.  Those moments will be fleeting, but they will be so very, very sweet.

Analyzing My Sadness

As I wrote about recently, we have pretty much come to the decision that Janey needs to change schools to attend a specialized autism program.  It's a hugely tough decision, for us and for her current school, and everyone is working on making sure we are doing the right thing and doing it in the right way.  Everyone is working to do the best for Janey, and yet, still, I am very sad.

I am sad because I love her school.  I love the people there.  It's become a home away from home for me, for the past 14 years.  When I drop off Janey, I talk a little with people I've known for many years.  I care about them, and truly love some of them.  It's a wonderful school.  But---I know that isn't what is the most important.  The most important thing is that Janey be in a place that can best help her be happy and live up to her potential.

This morning, the sadness hit me very hard.  It was "Dress Up in Green" day at her school.  Although they can't come out and say it, it's for Saint Patrick's  Day.  There are many, many Irish families at Janey's school---probably close to half the families, so it's a big day there.  I dressed Janey up for it, and thought about how much I enjoy things like that---special dress-up days, field days, the excitement of a school just before Christmas, the days that are a little out of the ordinary.  And then I thought about how in an autism school, those days will probably not happen.  Kids with autism often don't like changes of routine.  They like predictable days, not special days.  And I thought about how Janey didn't care a bit about dressing in green.  She doesn't know what St. Patrick's Day is.  My sadness was just for myself.

However, when we got to the school, there was a special surprise.  A bagpipe player was playing for the kids as they entered the school.  Janey walked straight over to him and started lightly touching the bagpipe.  The sweet player showed her parts of it, and talked to her so kindly.  Then he played another song, and the smile on her face was one of her incredible, overwhelmingly wonderful smiles.  She held my hand and started to dance.  As we walked down to her room, she was as happy as I've ever seen her.  And I thought---it is not totally just me that I am sad for.  I'm sad that she won't experience the everyday surprises that a "regular" classroom holds.  She won't be around other children that are living a more typical childhood.  She will be with people that care for her, I know, but there is something given up, too, something hard to define but something important.

This sadness---it doesn't mean we are making the wrong decision, I don't think.  But it's very real.  I have often thought how one of the biggest joys of being a parent is reliving the parts of your own childhood that were special.  When we think back on childhood's special moments, we don't normally think "It was so special that my days were predictable.  I have such special memories of regular school days"  We think about the time we got a huge bag of candy for Halloween, the classroom parties, the field days and the shows and the bus rides to meets and the snow days and the graduations.  At least I do.  I want Janey's life to have those moments.  I want her to be surprised by bagpipers.  That is what is making me sad.

Puzzlers

Janey likes to keep us guessing.  She's good for our brains that way, like they say if you do a lot of crossword puzzles it can stave off brain cell loss.  Here's a few of the unfathomable Janey questions...

1.  Why do legs always have to be straight?  Janey can't stand anyone's legs to be crossed, or tucked under them, or bent at all, really.  She won't freak out over this usualy---she'll just let you know, by trying to straighten them over and over and over and over, until it's just not worth it and you put your legs the way she wants them.

2.  Why do lights sometimes all have to be on and sometimes off?  When Janey wakes in the night, she needs to change the state of the lights.  If they are off (as I prefer), they all need to be turned on.  If they are on, often they need to be turned off.  One odd time she was asleep and we were up watching a movie.  She woke just for a minute, went over to the living room light and switched it off and then on, and then went straight back to bed and sleep.

3.  Why do tops sometimes need to be taken off and then put back on?  This morning was an example of that.  Janey took off her pajama top at least 10 times, and then came over to me screaming because she wanted it back on.  I did it without comment the first 9 times, but then tried to talk to her about it a little.  Not a good choice---her scream let me know this wasn't open for discussion.

4.  Why does Janey ask for certain TV shows and then freak out when you put them on?  This is a constant issue.  Janey will ask for, say, "Kipper's Playtime".  You put it on Netflix, and at the first bit of it, Janey will get hysterical, grab the Netflix remote and madly change the show, as if you were trying to force her to watch something horrible.  The same happens with books.  Janey will bring me a book to read, I start to read it, and all hell breaks loose.

5.  Why does Janey ask to have her nails cut---a grooming activity most kids don't like---constantly?

6.  Why do all pillows have to be on the floor?  I have been on a sewing machine frenzy, making throw type pillows.  Janey likes these, but she likes then to be on the floor.  No matter how often we put them back on the couch or bed, next time we look, they are all on the floor.

7.  Why does Janey twist up her fingers?  She so often puts them in the oddest positions, like pretzels.  It looks very uncomfortable to me.

8.  Why does Janey almost always ignore the cats?  It's like they are invisible.

I could probably go on for hours---there are so many little habits or behaviors of Janey I truly don't understand.  I am sure there are reasons, and I have some theories, but overall, they are a mystery.  It's one of the reasons I most wish I could communicate better with Janey.  I'd love to know the whys.

I have to admit...

The last few weeks have been great ones for Janey.  She has been happy almost all the time, fairly talkative, good at school, fun to be with, aware of her toys and books as she has rarely ever been before---she has been a joy.  I wrote about how last weekend was so scary with her brother William, with college anxiety.  Thankfully, SO thankfully, he seems to doing much better now.  It helps us be able to help him that Janey was so happy.

I think I have a poor memory for emotional states.  When Janey is happy for any length of time, I forget how hard the other times are.  And when she's in a tough stretch, it's truly hard for me to picture how the good times feel.  But I do, after this long, always keep in mind that her emotional states seem to change about every two weeks.  I don't think she's ever had a very good stretch longer than two weeks.  She's had a few bad stretches that lasted maybe a month, but the VERY tough parts usually, again, are about two weeks.  The two weeks were up today, and on schedule, Janey broke down.  She barely slept last night, waking over and over to cry.  This morning, she was inconsolable for a few hours, just screaming, the new extra loud scream she's working on.  

However, gradually, almost unnoticably, over time I am realizing that she is able, with our help, to get her moods under control a little better than in the past.  It's not easy, but in the past, a mood like this morning meant the two weeks were starting, and that there was not going to be any letup for a while no matter what we did.  But today, Janey is now at least calm enough to be switching shows around on Netflix, and she actually watched The Care Bears for about half an hour---the longest she's watched a show in a while.  She truly does seem able to try, with help, to control her crying.  I think she's maturing, and we are also learning a little what to say to her and do with her to help her.  For example, this morning I realized she might be confused about whether today was a school day or not.  Tony was home, but he was home for a long time during the shutdown, so that got confusing, and Freddy left the house around the time he'd usually leave for school, for the PSAT.  So Janey might have been thinking "What the heck?  Is it a school day or not?"  I went over it with her, and whether that was it or not, it seemed to calm her down a little.  We also fed her a lot, which is one of the more reliable ways to calm her.  I dressed her---she doesn't care for lounging around in pajamas much, and I've figured out that with trial and error.  Who knows how the rest of the day will be?  But I don't feel desperate, as I have other days that started with crying.

I've heard from people with older girls or with adults with autism that it does get easier, and I think I can see how it works now.  It's not a miracle breakthrough, it's not a real change in the autism or in parenting.  It's little things, like gradually figuring out what sets Janey off and how to respond to her, or her learning, slowly but steadily, what we expect of her and how to control her emotions just a little.  When I say slow, I mean so slow that years can go by and you don't see a change, but one day you realize---"Gee, it's been a while since Janey screamed for two weeks without stopping!" or "Janey was crying this morning, but just now she's not!"  Baby steps.  Things that parents with only typical kids might see as no steps at all.  But I have to admit it's getting better---maybe not better all the time or so much better, so I can't totally quote the Beatles, but it's getting better.

The TV Standoff

About a month ago, Janey started turning off the TV any time something was on that she didn't want to see any more.  This would be fine, but she then turns it back on, turns it off, turns it on, all in rapid succession.  This isn't great for the TV, and is also pretty annoying, and it doesn't make her happy either---it sends her into a fury.  So we made a rule.  If the TV gets turned off, we unplug it.  No more TV for a while.  We are very consistent about it, and very firm.  So...you'd think that the problem would be quickly solved.  You'd think wrong.

Janey likes TV and videos a lot, sort of.  It's more like a love/hate relationship.  She likes certain shows VERY much, like Kipper.  However, after watching any show much, there are certain parts she likes and certain parts that scare her, or just bug her.  She used to get to those parts, and then ask us to watch something else, but I guess the turning off of the TV was a more direct way to handle the problem.  So we made our stand.  Basically, all it has done is stopped any TV  watching from happening.  If the TV is on, Janey pretty much immediately turns it off, we unplug it, she screams, and then eventually stops asking for it for a bit, then asks again, and after it's been a while, like two or three hours, we go over the rules again, put something else on, and she turns it right off.

I've always wanted to be the kind of mother with kids that just don't watch TV, but over the years, I've realized that I really don't care that much.  I think kids self-regulate, as long as you don't let it be all there is to do.  William watched a ton of TV when he was younger.  As he got older, homework and guitar took over his life, and he watched very little.  When he did, it was a history show.  Freddy never watched much TV.  He and I get into a few shows together---we were big Breaking Bad fans--and we love watching them, but TV was never his thing.  Janey liked TV more from the start.  I think a lot of kids with autism do, and I think they learn a lot from it, especially videos, which are always the same and which can teach in a way she relates to.  She isn't TV obsessed, but to be honest, there isn't a lot else that she enjoys as an indoor activity. She doesn't like to be read to, she doesn't know how to draw, she has next to no interest in toys.  We listen to and sing a lot of music, and I try very hard to engage her in other things, but TV has always been a big part of her life, and I've come to the point where I don't feel like I have to apologize for that.

And now, if we keep standing our ground on the TV turning off, there isn't any more TV.  Even if we don't, the TV is going to break from constant off and on, and we aren't in a great position right now to get a new one.  What do we do?  This reminds me of the taking clothes off outdoors standoff.  Janey can't take off her clothes outside---we are firm on that.  If she does, we bring her straight inside, which she hates.  She loves being outside.  But for a while this summer, she constantly took off her clothes almost the minute she got outside.  I don't think she really got it.  But we couldn't really compromise.  I think it was more that she got out of the habit finally than she accepted the limit, as she still occasionally does take off her clothes, and we go inside.

These stand-offs are another example of how "normal" parenting techniques just don't work with Janey, much of the time.  She doesn't really seem to get consequences. She has no desire to please us.  She isn't very good at thinking out how her actions will play out.  And so, although she very much wants her Kipper or Sing-A-Longs or Yo Gabba Gabba or whatever, she can't seem to figure out what she needs to do to still be able to watch them, just as she doesn't seem to get why taking off her clothes leads to an end of outside time.  Common sense would say that if we stand firm long enough, it will work, but common sense is not always right.  Even I am starting to miss Kipper the Dog.

Puzzling out the rituals

After recently figuring out what Janey really meant by her common phrase "Snuggle on Mama's bed" (which I wrote about here), I've been more alert to other rituals or OCD-like needs that Janey has.  It's tricky to figure out, as she talks so little.  I think with many of the rituals, she just goes ahead and does them, quietly, because it's too much work to talk about them and because she's not driven socially to share them.  Others, though, involve us, and I'm realizing much of her speech she does have might actually be in service of trying to get us to understand those needs.

The big breakthrough this week involved how Janey is often bringing me clothes, and saying "Put on shirt" or "Put on pants".  This almost always happens when we get home from someplace, like school or shopping.  I figured, for years, she was asking me to change her clothes, and I usually did, because I try to do what she asks if there's no reason not to.  But often she would freak out as I tried to do this, get hysterical, take off all her clothes, throw the clothes around, and I'd say something like "Fine!  We won't put that on!" and think to myself "Why is it always this way?  Why does she ask for things she doesn't want?"  Lately, though, she's been more often bringing me a piece of my clothing.  I assumed she was confused, and wanted to put that on her, and I even did a few times, which she sort of half seemed to accept.  FINALLY, it struck me.  When she brings me clothes, she wants ME to change my clothes.  It's something I often do after coming home from someplace, a lot because I'm a slob and have spilled food on myself or gotten my pants muddy or something.  I guess in her mind that became a ritual---Mama changes clothes when she gets home.  When I didn't, I wonder if she felt uneasy---is Mama leaving right away again?  Why is she not doing what she is supposed to?  And gradually, she realized that some clothes were mine and some hers, and tried in her best way to show me what she meant by bring me my clothes.  This week, as soon as she brings me any clothes, I go change my clothes.  The look on her face is priceless.  It's so wonderful to see her realizing I finally understand.

The next step would be to do what she needs me to do before she asks.  I've tried to do that with the Mama's Bed issue.  Tony has been picking Janey up from school, and when I know they are about to get home, I get on my bed, so when she walks in the door, I'm where she needs me to be.  This has greatly reduced her screaming right upon getting home.  I might start to try that with the clothes.  When we get home, I'll let her know right away I'm changing my outfit, and see how that works.

There's lots of littler rituals we've noticed.  When we get in the car, Janey has to push on the central console area between the front seats.  When she walks by a certain bookcase, she touches the concrete block we used to make it.  She doesn't eat food until someone else touches it to their lips (for the first bite), which I think came from when she was a baby and I would test how hot or cold food was that way.

I can't imagine how it would feel to have certain things that need to be done a certain way when it's so hard to communicate that.  There have been times in my life I was quite affected by OCD.  It's been a long time since it's been a problem, but I well remember it, and how extremely strong the feelings are that things MUST BE DONE RIGHT.  I'm sure at least some of Janey's tantrums come from us just not getting what needs to be done.  I am not sure what to do with this knowledge.  I am sure there's medication she could take, but I am not sure I'm ready for that step.  There are cognitive ways to deal with OCD, but those would be beyond Janey.  I am trying to talk to her about her feelings in very simple terms, just saying things like "It's scary when Mama isn't where she's supposed to be, isn't it?" and I get that response---that look of surprise and thankfulness.  I think for now I'll just keep observing, and trying harder to figure out what Janey is telling me, even if she doesn't have the words to really explain it.  I think it's more important now to establish her trust by showing her I do understand than it is to try to overcome her rituals.  We'll keep on truckin'---keep on trying to figure out my puzzling girl.

The Pajama Game

Traditionally, Janey hasn't cared a great deal what she wore.  Once in a while, she'd get attached to a certain shirt, especially at one point her "rainbow shirt", which was a tacky thing with sequins making up a rainbow.  But usually, she just wears what I put on her.  Lately, though, that isn't the case.  Janey has become hugely attached to pajamas, and most especially, her "snowman jammies", a fleecy nightgown, very wintery, with snowmen on it.

All weekend, Janey wanted to wear her snowman getup.  It was a fairly hot weekend, with yesterday close to 90, and it was painful for me to see her in fleece.  But I gave in mostly.  I cruelly insisted on regular clothes when we had to leave the house, but inside the house, I let her wear the nightgown.  By midday yesterday, it was covered with food, and I had to wash it.  That was traumatic.  Janey kept searching for it, and throwing a complete fit when we tried to substitute other nightgowns, or, God forbid, regular clothes.  When Tony was going to take her to the store, she had reluctantly settled on a long ago outgrown pajama top.  He put shorts under it and was heading out the door.  I stopped them, and tried very hard to convince them both that a too small pajama top was not suitable wear for out in public, but Tony said "it took this long to get her into something---just let it be!"  I realized he had a point.  The top covered what needed to be covered, was fairly clean and at a distance might not look like pajamas, so I let it go.  She fell asleep in it later, so I didn't have the nighttime snowman jammie fight.

I think the jammie obsession is part of Janey's need to recreate situations that comfort her.  Friday night, once she got in the nightgown and I lay down with her to get her to sleep, she has the most wonderful look of comfort and happiness on her face, and she actually looked straight at me and said "together again!"  It was great.  The jammies are part of the stage setup she uses.  They are part of how she creates a comfort zone for herself, and I do respect and understand that.  But....

I was worried about dressing Janey for school today.  I managed to get her to have a bath, which has started to be another battle, and then when dressing her I put on my very best stage banter, which I have gotten good at over the years.  "Hey, look at this nice shirt!  It seems like a jammie shirt to me!  It looks very comfy!  And WOW!  This skirt seems just like a jammie skirt!  It has a nice elastic waist!  It looks so nice!", all the while dressing her as fast as humanly possible, hoping to get away with it.  So far so good.  Janey is watching her usual 7-7:30am dose of Curious George, still dressed for now.

In a way, it's cool to me that Janey has started to notice what she wears.  Although I'm not much of a dresser myself, I enjoy clothes---I enjoy picking them out for her, I like comparing brands, I just plain like clothes.  I've often tried to interest her in clothes.  But of course, like most things with autism, now that she is noticing them, there is her own twist.  That's my Janey.

Dreaming Small

I don't dream much about Janey.  I don't dream much about my kids at all, or my current life, although I dream all night every night.  In my dreams, I've gone to high school and college about a thousand times over, sometimes vaguely aware that I am redoing an experience.  But the last 20 years of my life are barely there in my dream world---I have no idea why.  Last night, though, I had a dream about Janey, and it struck me in how mildly it changed reality.  I am dreaming small lately.

In the dream, I took Janey to a very upscale kids clothing store.  I wanted to get her some fancy clothes for a party.  I held her hand constantly, as I would do in real life, and we looked at the rather meager selections the store had.  I noticed there was an upstairs, and so we went up there.  It was in the form of a loft, completely open to the downstairs with no railing or anything, but that didn't seem to bother me.  I found some promising looking clothes, and Janey found a dollhouse and some play teacups.  There was a slightly older girl there who started playing with Janey, and so I let my guard down.  So much so that when somehow my parents showed up and needed me to walk about a block away to help them with something, I just left Janey there.  When I got back, she was fine, but all dirty and without her shoes.  She said to me "We went out to play in a meadow"  Even in the dream, I realized that was a pretty great sentence from her, and praised her for it.  And that was it, except for a long drawn out part of looking for her shoes and the nasty shopkeeper being annoyed I had lost them.

And I wonder---why don't I go all out in dreams?  Why isn't Janey talking fluently, not autistic at all?  The Janey in this dream was mostly the real Janey, just a better talker, and even then, the dream world knew that was an unusually good utterance.  Of course, there's no answer to those questions.  Nobody understands dreams.  But if there was a meaning, I'd say it was one of acceptance.  Janey isn't going to change drastically.  The little changes are what I hope for now, the little triumphs.  They make me happy.  Her autism is a basic part of her, even in my dreams.

The girl in the Hanna Andersson dress

Last night, I went to the holiday concert at Freddy's school.  Freddy wasn't in the concert, but my friend's daughter was, and I love hearing the music.  It was a great night, with lots of different music groups performing.

During one of the sets, I found myself unable to stop looking at a girl playing in the back row.  She had on a dress that is a type I love---a fair isle sweater dress, like from the Hanna Andersson catalog.  I didn't know they made them in her size---she was as tall as a tall adult. It was the kind of dress either a misguided parent would pick out for a girl who wouldn't know to object to it, or a dress that a girl would want to wear that didn't realize how odd it looked on.   Her hair was done in an unusual way, and she had  a look, a look that I think I know.  She was "on the spectrum", I'm fairly sure.  She'd be on the very, very high end of the spectrum, as Freddy's school is an exam school, accepting only pretty strong students, and she was in one of the more selective music groups there.  She was on the far opposite side of the spectrum from Janey, I think.  I could be wrong, but I don't think I was.

It's a dirty little secret, maybe in my own mind only, but I think not, that there is some jealousy and nasty thoughts by those of us with low functioning kids toward high functioning kids.  I shouldn't have it.  I have a child that was once considered on the high functioning level, and I know it's not easy.  But there are times I think "Yeah, you worry your child might have trouble making friends, you work on workplace issues, you talk about how their disability might lower their SAT scores.  Cry me a river.  I'm dealing with smeared diapers, hoping someday my child might be able to do well enough to live in a group home, wishing they could some day read a simple sentence.  My sympathies are limited"  But last night, I got a little perspective, if only due to my own imagining.

I projected about that girl, and a few other kids I saw---a boy in one of the choirs that was not with the program, not in rhythm, another boy who played like a professional but looked hugely awkward and unhappy.  I thought about what life must be like on the very edge of fitting in.  I thought of the lack of sympathy that must exist for kids that can score high on tests, can play instruments amazingly, can be there almost part of it all.

Janey will never fit in.  The older she gets, the less she fits in.  And that, in some small ways, is easier than the alternative.  When we go to a store or other public place, it's immediately obvious she is not typical.  She makes her "Ahhh-ahhh-ahhh" sound, she waves her hands, she sings to herself, she has to have her hand held every second.  People, the vast majority of people, look at us with kindness, or if not that, at least some degree of sympathy.  Many people love Janey.  She doesn't have to struggle socially, as she has no idea whatsoever she doesn't fit in.  She doesn't try to fit in.  She is low functioning enough that unless someone is extremely judgmental or clueless, they don't assume she's just a naughty or loud or ill-disciplined little girl.

But that girl in the Hanna Andersson dress, the girl that might actually be just fine, but the girl I used as a jumping ground for thoughts---she probably lives a daily struggle, unable to quite keep up, being very bright but not able to use that to fit in.  I am going to keep her in mind, and be grateful, in an odd way, for Janey's obvious disabilities.

Kind of sort of toilet training

I used to dream a lot of the day I could say "Janey is toilet trained!"  I pictured it like that, a certain day, a day I could leave pullups out of our budget forever and buy lots of cute underwear and just look back at the long, long years of non-training and laugh.  But like a lot of dreams when you have an autistic child, it isn't quite coming true like that.

Janey is sort of trained.  I feel like knocking on wood even saying that.  It's better than not trained, for sure.  But it isn't complete, and I don't know when it will be.  Gradually, gradually, gradually, over the summer, Janey figured out how to use the potty---not the regular potty, but one we set up for her in the living room.  We have only one bathroom and it's quite removed from the rest of the house, back through William's bedroom (we have a pre-Civil war old house, and the bathroom was an afterthought, I think) and with Janey's propensity to do mischief (which, not to get vivid, has included playing in the toilet), we needed something closer for her to use.  That itself went against any guides I read, but those guides don't know my house or my Janey.  Janey seemed to finally get the feeling of having to pee, and how to release the pee in a potty.  She was always able to hold it, that was never the problem, but the crucial releasing step seemed to kick in.  Over time, she was hitting the potty once, then twice, then on some days 3 or 4 times.  But almost every day, she also didn't hit it once or twice.  She also seems to have no control at night.

When school started, she went back to her pattern of holding in pee a lot.  But even there, I am getting more reports of her successfully using the potty.  She has a wonderful aide in her room who takes her on a regular schedule, and once in a while, she'll actually go.  She's also used the toilet now and then in other situations---at other people's houses, for example.

But still, I can't proclaim her trained.  I've thought about just getting rid of the pullups, and over the summer, I tried that now and then.  But it seemed to send her backwards.  She would hold the pee all day, not wanting to have an accident but also somehow not able to get that wearing underpants would make it EASIER to use the potty, not harder, and then would pee all over the floor.  She seems finally to not like to wet her clothes, and the the nervousness of not having a pullup on seems to take over her mind---she usually cries when I put on underwear.  So for now, we still use pullups.  We still remind her, which sometimes works, but most of the time when she is successful, it's totally on her own.  So that dream moment is delayed for now.  And it might be delayed for a long, long time more.  Janey does things the way she wants to.  Nothing at all worked until she was almost 8, which when talking to other mothers of autistic girls, seems like the magic age.  It still seems like a miracle when she uses the potty.  So I'll take it, for now.  Like a lot of dreams, what you actually get might not be what the dream was like, but we live in reality.  Autism seems designed to remind us of that.

The Autism Wardrobe---Dressing Janey

You would think that clothes would be one of the areas where kids with autism and others would not be too different.  There isn't an autism uniform.  But as I was thinking today when shopping for Janey, there are actually a lot of issues involved in clothes.

First of all, there's the toilet training issue.  Janey is not fully trained.  She is much better than she used to be, but far from completely successful at using the potty.  That causes a couple clothes problems.  One is the need to make her clothes easy to get off, for her or for anyone else helping her with the bathroom.  Elastic waists are important.  You can't use belts or complicated flies or buckles.  Also, not many clothes for an 8 year old are made to work well with diapers (or pullups, or overnights, or the various names diapers for bigger kids are called).  She needs high waisted pants that aren't extra tight.  Today's fashion seems to call for low waists, and so many pants I've tried for her don't cover the pullup.  She also has lots of accidents, even with pullups on, that cause her clothes to be soaked.  So the clothes need to be easily washable---no hand wash sweaters or the like.

Then there's her habit of mouthing things or fidgeting around with things.  Clothes can't have anything easily pulled off or put in the mouth, like hanging decorations or big buttons.  Zip front hoodies or tops or sweaters are also a very bad idea.  I don't know how many times Janey has ruined a zipper on first wearing of a piece, by zipping and unzipping all day long and getting it stuck.  She also occasionally gets into biting her sleeves---thankfully not all the time, but when she does, you need some thick sleeves to not rip them all to pieces right away.

The next thought is age-appropriateness.  In one way, it's a mother's dream to have a child that doesn't have clothing preferences and knows nothing about fashion.  I can dress her however I want.  However, that can mean that I dress her unlike her peers, because that's what I like.  I am not going to dress her like a mini-streetwalker, as fashion sometimes seems to dictates for even pre-teens lately, but I don't want to dress her all in cute little outfits that would look good on a 2 year old either.  I try to keep a little eye on what other girls her age are wearing, and get her clothes that are somewhat like them, within reason.  But if I mess up, and dress her in some horrible fashion no-no, she's not going to notice and tell me.  It's all on me.

And then there's just little oddities she has.  She is not nearly as tactilely defensive as I know a lot of kids with autism are, so the textures of the clothes are not as important as with some kids like her, but she occasionally just doesn't like something, and won't wear it.  Which is of course something all kids do, but with Janey, I have no idea why, and so can't learn from it to avoid getting her other clothes like the offensive one.  She also gets, once in a long while, hugely attacted to a certain piece.  For a long time, it was a rainbow top, with rows of sparkly rainbow sequins.  I hated it, of course, but she managed to find it all the time, even in laundry baskets, and had no understanding of dirty clothes or clean clothes or weather---she just knew she wanted it on.

Janey's favorite thing to wear, though, is as little as possible.  As she get older, we are getting stricter about her keeping her clothes on.  I guess a lot of kids on the spectrum like to do a Lady Godiva act, but she is getting close to the age where it just can't ever happen.  She does seem to get that she can't take off clothes at school, but at home, she still often tries.  Last summer, we came in from playing outside the minute she tried to take off any clothing, and I hope that made an impression on her.  It's a struggle.

Still, with all of this, I am thrilled to have a little girl to dress.  I have to admit, after two boys, it was one of my first thoughts when I found out Janey was a girl that finally I would be able to have a reason to look at the dresses in stores!  And I have had a lot of fun dressing her over the years, and I will in the future.  It's one of those areas with a trade-off.  I'm not going to having to forbid clothes much.  They will be up to me.  And I hope I do a good job being Janey's dresser.