"Listen to my mouth!"

Janey overall was having a fantastic day yesterday. She was cheerful and upbeat and fun, loving listening to Christmas music with me and having a car ride with Daddy after a day too snowy for a ride the day before. We were enjoying her company so much. Then, as happens, something changed. She started crying, screaming, freaking out over everything. We had no idea what was going on. I snuggled with her on her bed and tried talking about it, asking the same old questions I'm sure she's sick of---"What's wrong? Why are you sad? Does something hurt? How can I help?" She didn't answer. William came in the room and I asked again what was wrong, and somehow the combination of him being there and my asking seemed to bother her a lot, and she hit me hard. I stayed calm, told her that I didn't like being hit, told her I wasn't going to stay snuggling with someone who was hitting me, got up and walked away. She screamed and screamed and screamed.

 After a little while, when I'd gotten her to say she was sorry (with much prompting, and who knows why I ever bother, because I don't think she means it, but I need to have her say it), I went back to snuggling her. She then looked at me intently, stared in my eyes with a look that was unusual for her, and said, twice in a row "Listen to my mouth!" I don't know what it meant. I really don't. I don't think it meant to listen to what she was saying. Maybe it did. But she usually doesn't use language like that, in a slightly indirect way. And she wasn't saying anything about why she was upset. But it meant something. She took the effort to say it, and you could see it was an effort. I stayed up a long time in the night, trying to figure it out. It finally came to me that it might be related to what doctors say "I'm going to listen to your lungs now. I'm going to listen to your heart" I don't think she could pull up the words "lung" or "heart", and she might have been saying something in her mouth hurt and she wanted e to see that, or that she just felt sick and wanted help from a doctor. But she doesn't seem sick, doesn't have a fever, doesn't have low oxygen. In this COVID times, taking her to the doctor when she doens't seem sick is not really a good balance of safety and health. 

 The whole thing brought out so many issues. Why does she get upset out of the blue? Why is it so hard for her to tell us what is wrong? Why does she hit once in a while? What do mysterious phrases she says to us mean?

 The hitting seems like her way to say she's really, really seriously not liking something. She doesn't do it often at all now, and when she does, it doesn't have the feel of something spontaneous. It feels like a planned thing, at least planned a few seconds in advance. The last time she really hit me was when we were trying hard to do Zoom classes, and I told her it was time for one. I think last night she was telling me she really didn't like my endless questions. Of course, hitting is not at all the way I want her to communicate, and I need her to know that, but I also need to listen to what issues are upsetting enough for her that she feels she has to hit. 

 The "listen to my mouth"---phrases like that are about as frequent as hitting, not very frequent at all. You can tell she thinks about them before saying them. The way she looked at me was very striking. I could tell she really wanted me to pay attention. And it makes me feel awful that I wasn't able to quite get her message.

 It's frustrating so often, figuring out Janey's needs. I don't want her to be unhappy, but of course, like all of us, sometimes she's going to be unhappy. But it's so hard not knowing why she's unhappy. Was she just sick of being around me? Did she think about something upsetting? Did something hurt? Was it just too long a day, and she was tired? It's hard dealing with this, but of course I'm sure it's a million times harder for Janey, being so upset but so unable to explain why, doing her best to let me know in the way she can but not having me get it. Janey, I will try to listen to your mouth, and your heart, and your mind, and all of us. I am trying hard.

Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

Vision Statement

When talking to a friend today about IEPs, we hit on the topic of vision statements.  I had noticed that IEP meetings often start with us being asked what our vision is for Janey's future.  I had thought that was just kind of a warming up question, but in reading a bit, I realized it's required in some states, and used in most.  Here's a link to an article about it.

That got me thinking.  I don't think I've ever planned an answer to that question, which is probably because I don't spend a lot of time thinking about visions for the future.  Maybe that's just me.  Someone once asked me what I had wanted to be when I grew up, and I thought about it and realized I never really had an ambition.  I figured life would happen as it's going to happen, and it has.  That's not all good, of course, but I don't think it's all bad, either.

But what IS my vision for Janey in the future?  I made myself think about it today.  It's tough, because my mind likes to think up scary scenarios.  It goes to places that certainly aren't my vision, unless it's some unbid vision from some dark places.  And maybe that's my problem, the word vision.  A vision is something that seems to be to be given to you.  You don't read poems or old literature about PLANNING a vision.  You GET a vision. 

But if I try to plan a vision, a quote keeps getting in my way, one that I remember hearing for the first time and thinking "Well, that's the most insightful thing I've ever heard"  It's been attributed to various people, but I'll pick John Lennon, and it goes "Life is what happens to you while you're busy making other plans"  There are so many variables, so many surprises, so many detours, that life really is what actually happens, as we plan for a different life, one we never actually live.

Okay---all that said.  But still, I want to try to have a vision. 

Here it is, the honest one, what I really do want for Janey.  I want her to live with Tony and me, until we are gone, until we die or are too sick to care for her.  I want those years with us to be happy years.  I want her to have as much agency as she can over her own life.  I want her to make choices as to how she wants to spend her time, and I want to honor those choices as much as possible.  I want her life to be as free from pain as it can be.  I want her to always be with those who truly love her.  I want her life to continue the best parts of now.  I want her to have car rides with Tony, to snuggle with me and sing Christmas songs together, to watch her favorite movies and dance with excitement, to ask in her sweet voice for bacon or coffee or soup or tomatoes and get them.  When we are no longer able to care for her, I want her to live with one or both of her brothers.

I don't feel like that's what I'm supposed to say.  I think I'm supposed to want more independence for her.  I think there's supposed to be some kind of sheltered work in there.  I think I'm not supposed to rely on her brothers to take up her care.  I think I should include skills like using money, or riding buses, or doing dishes.

Fear hits me here.  Right now, with Janey going to school, I feel able to trust her time away from us is safe and meaningful.  And maybe that could continue, with a group home or a day program or something else for autistic adults.

But something haunts me.  It's a remark by the adolescent specialist we've been seeing, to try to figure out a few physical differences in Janey's development.  At the end of a good appointment, she said "Well, we do want to start Janey soon on something to prevent pregnancy"  And although I should have heard enough to not have been knocked flat by that statement, I was, indeed, knocked flat.  Even though many years ago, Janey's psychiatrist put it more bluntly, telling us "She WILL be abused"  What kind of world do we live in, that because Janey is non-verbal and sweet and beautiful, she WILL be abused?  NO.  NOT ON MY WATCH.

But of course, that isn't my only fear.  Tonight, as I wrote this, Janey was using her iPad.  Or trying to.  YouTube wasn't loading.  Her talking, after some good stretches, is at a low point right now.  And she is tired---her early to bed genes are strong.  So she said nothing.  I was distracted by writing when I thought she was watching videos, while instead, she was endlessly touching a link that didn't work.  A small thing, but somehow it brought up thoughts of her not being understood, of wanting the small things she wants and not knowing how to communicate them, of her either crying in despair or even worse, just silently trying and trying and never getting what she is trying to get.

I have more thought about this, but this is dark enough already.  I'll try to salvage some good from this thought exercise.  The purpose of asking for a vision is, of course, to prepare for that vision, to know what needs to be done to make it come true.  How can we prepare for our true vision---Janey here with us, happy and living a meaningful life?

We can teach her how to access the things she enjoys, like movies and videos and music.  We can work on simple food preparation more, so she can fix herself the meals she loves when she wants them.  We can keep her healthy, free of physical pain as possible, free of mental torment as much as we can.  We can work on coping skills for her for things like waiting, so that half hour she sometimes has to wait for a ride doesn't lead to tears.  We can try, although this is a hard one with our current finances, to prepare for when her brothers care for her, to leave her somehow or other a trust.  We can arrange our house and our lives to give her what she needs and still preserve enough of what Tony and I need so we are all happy, not burnt out.  See---this vision planning works a little!

I have a bigger vision, if I really work at it.  It involves not just Janey, but the whole world of Janeys.  It's a vision of a world that includes people like her, that keeps them safe while giving them full lives.  It's what we've been lucky enough to find in schools for Janey, extended life-long.  I don't see that world happening any time soon, but I can plan for that vision, too.  I can keep talking about Janey's life and her needs and wants and talents.  I can vote for politicians, regardless of the ugly partisan world today, that understand special needs.  I can push in the small ways I am able for a future that better matches the hopeful plans we make when we love our children like Janey.

Pre-Christmas thoughts

"Does Janey look forward to Christmas?"  A friend asked me that a little while back, and the question has been occupying my mind quite a bit.  At the time, I said something like "I'm really not sure", but as I think about it more, I am pretty sure the answer is no.  Janey doesn't look forward to Christmas, because I don't think she really knows what Christmas is.  

Our tiny tree

I'm sure here a lot of people would disagree with me, and maybe I'm wrong.  Janey knows what Christmas MUSIC is, at least a little, and she would probably be able to say who Santa Claus is, and she could identify a Christmas tree, or a wrapped present, when given the choice of 4 pictures.  But in terms of it being a special day, one with rituals and expectations---no.

I've dealt with this various ways over the years.  Some years, I just went ahead and sort of pretended that she did get Christmas.  I got her presents, I had her hang a stocking, I talked up Santa Claus.  Other years, I didn't do as much, and concentrated more on the boys, or on just enjoying the season in general.  I don't think it made a lot of difference what I did, except in that Janey picks up a lot of her emotional cues from us, and probably she was happier in general when I was more relaxed and cheerful, whatever worked for that in a particular year.

This year, I'm not feeling Christmas a lot.  We got a tiny, tiny tree---a tabletop baby one.  No stocking are going to be hung with care---the boys are old enough for Santa to skip our house, and Janey---well, she's never once actually taken anything out of her stocking on her own, or shown any interest in what was in it, so I don't think she'll mind a bit. The same is true of presents---she's never opened one on her own or cared what was in one once opened.  She's have a couple under the tree, from other people, but I'm not buying anything for her myself.  Instead, we'll do as we have done for a while---her present will be to buy videos to stream on Amazon TV throughout the year, when one of the streaming services decides to drop something she's gotten addicted to.

I don't think giving Janey a typical Christmas, when I tried to, was ever for her.  It was for me.  It didn't hurt anything, but it wasn't something she cared a bit about.  I wonder how many other times I've done things "for" Janey that weren't for her.  As long as those things are benign, as long as she's neutral about them, it's not really an issue, but sometimes, it's harder to tell than it is with this Christmas issue.

Christmas is something different for all of us.  A week ago, Janey sang most of "O Holy Night" to me.  I cried---of course I cried.  That was Christmas for me, and from her happiness while singing it, maybe for her too.  I hope all of you and all your girls and indeed all of your family finds your own Merry Christmas this year.

As time goes by...thoughts, concerns and moments of connection

I haven't written as much lately as I used to.  There are a lot of reasons for that, and some of them are beyond the scope of this blog.  But some of it is that Janey is steadier than she used to be.  She is more settled into routines, and mostly happier.  For the most part, that's wonderful.  I would never want to relive some of the past years, especially what I think of as the Hospital Years, or the Changing Schools Years, or the Non-Stop Screaming and Arm-Biting Years.

There are still challenges, to be sure.  One is sleep.  For weeks, Janey fell into a pattern of going to bed around 5 pm.  Nothing anyone could do would keep her up.  When someone is determined to sleep, they sleep.  Of course, the other side was that Janey would wake extremely early---often at 1 or 2 in the morning.  And she would stay awake.  When she's awake, one of us has to be at least sort of awake.  We are at the point now where we can cap-nap in the same room as her, but never fully sleep, as we need to be alert to what she's doing, and she often makes sure we are not fully asleep by suddenly thrusting a TV remote or bottle of soda or stick of cheese in our faces and making demands.  After a few weeks of that, we fall into sort of a half-life.  You never feel fully awake or fully asleep.  Knock on wood, she's back in a better cycle---bed about 7, up about 4:30 or 5, which works with her bus arriving at 6:15.

Another challenge, or concern, is as always Janey's speech.  Her speech is highly cyclical, like everything else about her.  Sometimes she talks much more than others.  But overall, her talking has settled into a fairly low point.  She says only a limited amount of things, and even the things she does say are often said in mumbles, hard to understand, or in a very rushed recitation of a phrase.  She has a great speech therapist right now, and a teacher who seems terrific, but these cycles of speech don't seem very affected or changed by anything external.  Lately, her default answer to almost all questions is something like "That one!"  We ask "What show do you want?"---"That one!"  "What do you want to eat?"  "That one!"  I think she truly thinks we can read her mind.  Or she's mentally using a choice board and pointing to what "that one" is.  Whatever it is, it's frustrating.

There was a presentation at Janey's school today about the various high school choices in Boston.  Janey's in 7th grade, so there's another year before I have to choose, but I want to stay well on top of it and do a lot of school visits.  The presentations varied widely, and I think only actually seeing the programs will answer some of the questions I have.  But I'm clarifying my vision of the kind of program I want.  I want one where the challenges are appropriate, where Janey is accepted as who she is.  I think of a video game analogy.  I don't want a program where the sole goal is leveling up.  Janey isn't going to get a high school diploma.  She isn't going to hold a non-sheltered job.  She isn't going to live on her own, or even be able to be alone at home ever.  I want a program where she can be a success by being who she is, not by others striving to make her what she isn't going to be.

It's interesting how as Janey gets older, I think a lot less about how she is disabled and a lot more about just how she IS.  If she is happy, and she makes life so Tony and I can also be happy, and she is cared for and loved, that is wonderful.  The most wonderful times of all are times of shared happiness with her.  I had a moment like that the other day.  Janey, as I've written about often, loves Christmas music.  This year, she is very taken with "O Holy Night".  Not every version, as she let us know firmly when I played through a lot of versions on Slacker Radio with her, but when she hears a version she loves...wow.  I played such a version the other night, Nat King Cole.  Janey and I lay together on her bed listening to it, and our eyes locked.  The look in her eyes---I can't even think about it without crying.  We were both completely overwhelmed by the song, and we had one of those rare moments of pure connection.  They are the moments I live for.  In some ways, Janey lives in a different world than I do, but at moments like that, we are completely together.  It's hard to explain, but I'd guess others have had such experiences with their children like Janey.

I'm thinking of all of you this Christmas season.  I'm having a hard time this year, troubles and worries that are nothing to do with Janey occupying my mind often.  I wish so often I could spend time in person with so many of you I've met throughout this journey.  What I wouldn't give for a bunch of us to sit down and talk and eat and laugh and cry....  I hope December is a happy month for you all.

If Janey had her way about holidays...

This morning, Tony left very early to go to New York State to get Freddy and his friend Cheryl and bring them home for Thanksgiving.  This was a change in routine, as I got Janey ready for school and got her on the bus on my own.  Janey never says much in the morning, but today, she said even less.  She went through the stages of getting ready fairly cooperatively, but she kept looking at me with a confused and wary look.  I explained to her as best I could that Daddy was getting Freddy, that he'd be back later, that her brothers were coming home today, that school was going to be shorter than usual (they have a half day), that we'd have a nice big meal tomorrow, that school would start again Monday---all that.  And I thought, as I've had many times, that Janey would prefer there to be no holidays at all.

I don't know that for sure, of course.  But I strongly suspect it.  Holidays, to her, are upsetting changes in the regular routine.  They involve Mama and Daddy doing things they don't usually do, and not being available when she expects us to be.  They mess up the school days and weeks.  They have people trying to get her to do odd things, like blow out little fires on pastry, hang socks up at night, go through many steps to open up something she doesn't want or care about, dress up in odd costumes and go to houses and ring doorbells---a lot of weird stuff.

I think sometimes if Janey was an only child, we'd pretty much have birthdays and Thanksgiving and Christmas be much like any other day.  There are parts she likes, of course.  Christmas music is one of her favorite things on earth, and in fact "Frosty the Snowman" got the only smile out of her this morning I could get.  She enjoys a good cake as much as anyone.  And she'll be glad to see her brothers.  But overall, holidays stress her.  But she isn't an only child, and even if she was, Tony and I are people too.  We'd want some holidays in our lives.

The combination of autism and holidays, or Janey and holidays anyway, bring on two big feelings for me---guilt and sadness.  The guilt comes on, strangely, when I do things to make holidays less stressful for her.  If I don't get her more than a token gift for Christmas, because she hates opening presents and has no interest in 99% of anything material, I feel guilty that she has nothing under the tree.  If I don't take her trick-or-treating, as I didn't this year, I feel guilty that she is missing out on something I loved as a child.  The guilt is foolish, I know, but it's there.

The sadness---that is on me.  It is my sadness.  Janey is not sad that she doesn't fully get and enjoy holidays.  But I am.  Holidays, in a lot of ways, are for parents.  We look forward to seeing our kids pull treats out of the stocking, gather huge piles of candy and sort them, blow out candles as we wipe away tears and think about how fast they are growing up...holidays are the Hallmark moments of parenting.  And I admit---it makes me sad, in a completely selfish way, that Janey would prefer to skip so much of what I want to experience with her.

Thanksgiving is one of the easier holidays.  It involves mostly eating, which Janey certainly does like.  It starts the season of Christmas music, which can never start too soon for her.  She even sometimes likes the parade on TV a bit.  So, we'll try to keep the day as routine as we can for her, while sneaking in bits of the parts she will at least tolerate.

Happy Thanksgiving 2016 to all of you.  I am incredibly lucky to have found this community, and I am thankful for those who read this blog, extremely thankful.

Annual physical and a surprise sentence

Janey had her annual physical yesterday.  She's had a fairly healthy year, so we hadn't seen her pediatrician since last January.

The tough part of the visit was the wait.  We were in the waiting room for about 45 minutes.  That's quite unusual, but I guess they were very busy. In the past, this would have been a recipe for extreme disaster.  As it was, it was hard but not impossible.  Several times, Tony took Janey for a little walk, staying near enough so I could call him right back if we were called.  As the room cleared out, and we kept thinking surely we would be called any second, we stayed in the room and entertained Janey as best we could.  It struck me that although part of what's different than the past is that Janey has matured, part of it is that Tony and I just do what we have to do now, without caring how it looks.  For a long time, we sang and danced with her.  I sang Christmas songs, quietly but not silently, and I didn't care if people stared.  And people did stare---especially kids.  I don't like the stares, but they don't stop me any more.  I know Janey confuses kids sometimes. It's hard for them to figure her out.  I less like the stares of the parents.  I want to say to them "Have you never seen a child with disabilities before?  Is is really that shocking to you?  You know, she's a lot more interesting than your little snobby brats!"  Not nice thoughts, but when you've been trying to hold it all together for as long as that wait seemed, you get nasty sometimes in your mind.

Once we got into a room, it was much easier.  We really like our pediatrician a lot.  I'm glad we made the change about a year ago.  The pediatrician that saw the boys was right for them, but I don't think he ever felt comfortable with Janey.  I am pretty sure he saw her as a tragedy.  That is not the attitude I want in someone treating her.  The new pediatrician seems to delight in her, while still understanding the challenges she presents.  She listens well, and she talks directly to Janey.  She did a good exam, and Janey looks healthy.  At the end of the appointment, Janey got a flu shot, which we were not sure how she'd take, but she took it extremely well---not a single protest or scream.  You never know with her.  Hopefully, she won't get the flu this winter as she did last winter.

After the shot, as we were putting on Janey's coat, she said, plain as day, "Can we go home now?"  Tony and I looked at each other in amazement.  That might not seem like a remarkable sentence, but it's the type that is extremely rare with Janey.  Her speech is rarely that direct.  The usual thing she'd say in that situation would be "Want to take the big girl for a car ride?"  or "Listen to music in the car?" or "Do you want salami?" or something else that means basically the same thing, but doesn't come out and say it.  A sentence like the one we heard, direct and grammatical and appropriate and succinct, is very, very unusual for her.  It was wonderful to hear.

As the years go by, we measure success with Janey on a scale that isn't the same as most parents might use.  It's her own scale.  We headed home feeling that we are indeed making progress.  And by we, I do include Tony and me.  We are making progress in being Janey's parents.  And she is making progress in being herself.  And that is a good feeling, something to be thankful for.

A drink and a song

Last night, we decided to live it up a little and get some dinner out---some Burger King.  We ordered just what we felt like, because we are like that, living large, you know.  And then we ate it in the scenic lovely parking lot of the mini mall the Burger King was at.  I told Tony as we ate that I knew when I married him he'd take me some special places, and a night like the one we were having certainly proved I was right.

Seriously, though, we enjoyed ourselves.  I was thinking how in some ways, I'm pretty suited to the lifestyle that life with Janey brings.  I am not much into getting dressed and going out, I wouldn't really call myself unsociable, but I'm probably low-sociable, and I am as happy eating in the car in a parking lot as I would be in a fancy restaurant overlooking the ocean, most of the time.  We had a nice meal, joking around and people-watching.

At one point, Janey asked for a drink of Tony's soda.  He had a big diet Coke (he is a diabetic).  We don't usually like Janey to have soda, but in the spirit of a carefree night, we gave it to her without a lot of thought, and she had a nice big draw of it.

When we got home, it was the time Janey usually goes to sleep, about 7:30, but she wasn't sleeping.  She finally did go down about 8:30, which was fine.  In another example of just how we roll, we all went to sleep at that time, which is I have to admit a fairly typical bedtime for us.  We are just not late night people.

At four in the morning, Tony woke me up to say Janey had been up almost all night and it was my turn to take over, so he could get a little sleep before work.  I was happy to, but not happy to hear about the sleepless night.  We've certainly had them at times, but not too often recently.  There's two types of them.  One is the upset, screaming up all night and the other is the cheerful but demanding up all night, and Janey was in the second mode.  Every time Tony drifted into a minute or two of shut-eye (we stay up when Janey's up, but the human body can only take so much not sleeping and we drift off for minutes here and there), Janey had a new request.  So he was not in a good way.

Janey switched over to requesting things from me.  She watched part of "Journey to Joke-a-lot", a Care Bears movie that I think was designed mostly for late night college parties where there might possibly be some non-sobriety going on, due to its many wild colorful scenes of roller coaster type rides going through bizarre landscapes.  Then she asked for another show on the "big TV", but I told her it was time to lie down, and if she couldn't sleep, she could use her iPad.  That was a mistake, as it turned out her iPad was out of charge.  That is something Janey doesn't get at all.  I think she thinks we just every now and then decide to take away the iPad, to show our dominance or something.  We've tried getting her to use it plugged in, but she immediately unplugs it.  So she was ready for a meltdown.

Grasping at straws, and cursing the caffeine in the diet coke, consumed after 12 noon, which we have to be reminded over and over and over results in her not sleeping, I asked her if she wanted me to sing her a song.  She said immediately "Yes!" which startled me, as she isn't usually a direct answerer and she generally isn't that into my singing.  I asked her what song, and she said "Angels we have heard on high!"  Another direct answer, and I knew what it really meant.  I pretended I didn't, and started to sing the carol, and she said "On the big computer!"

For some reason, Angels We Have Heard must always be played through iTunes on the computer, with the visualizer on.  I knew that from the start, and I dragged myself out of bed and put it on.  And we listened and watched, the unseasonable song and the mesmerizing colors and shapes.  We listened together to five versions of the song.  Janey danced next to me.  Some of the versions required me to clap along, which Janey let me know by clapping my hands for me to get me started.  We skipped version six, done by Neil Diamond, and went to version seven, a VeggieTales version, proving that Janey doesn't always have great taste in music.  We wiled away the very early morning hours, until it was time to get ready for school.

I thought, after I'd had a little rest, that like the parking lot dinner, that sometimes what Janey wants and needs is similar to what I'd want and need.  I love hearing many versions of a song, and getting into the light show the computer provides, and aside from not quite wanting to do it when I'd rather be sleeping, I'd enjoyed myself a lot with Janey, having a drink and a song with a friend.  My life today isn't exactly what I'd ever pictured, but whose life ever is?  Life is what happens while we're busy making other plans, to quote John Lennon.  Having a child like Janey isn't in most people's plans, but it's life, and like any life, it has its downs but it also has its nights of drink and song.

A good day, then a bad day

Saturday was the good day.  Janey was happy pretty much from morning to night.  We hadn't had a day like that in several months.  It was wonderful.  She was cheerful, talkative and laughing---a real laugh, not the manic strange laugh she sometimes does.  She interacted so nicely with both brothers, and she sang and danced and was a joy.

During the day, Tony and I did a lot of knocking on wood and reminding each other not to think a corner had turned.  We enjoyed the day very, very much as it happened, but we tried not to get our hopes up.  I think we did, though.  Janey had been on the new mood stablizer medication for two days, two doses, and even though she's on a very low dose to start, we somehow hoped it was doing something, making her feel better.  Maybe it was.  But...

Today, Sunday, was awful.  It was right back to the typical bad days of the past few months.  Janey screamed a great deal, smashed her fists on the TV and the computer when they annoyed her, tried to hit us (we are getting better at being guarded and didn't get badly hit) and cried for hours.  It was a very tiring day.  It felt more discouraging than other bad days recently, almost, because there had been that little bit of hope.

Of course, I am trying to say the right things to myself, that things don't change instantly, that just because today was a setback doesn't mean the new medication might not be helping, that even "normal" kids have ups and downs---all those things I should think.  But I don't think I'm as good as bouncing back as I used to be.  The events lately make me see how bad things can get, and how little the medical or psychiatric profession can really do.

I've decided to give myself next week, Christmas week, off from anything autism related that isn't strictly about daily Janey care.  Most especially, I'm going to not think about the Mass Health debacle.  You might remember how when I gave our health plan Janey's new Mass Health card (state insurance for low income or disabled people), they freaked out and said it was the wrong kind.  After a lot of research and talking to an expert who luckily was holding a meeting at Janey's school, I think I figured out what happened.  When Tony talked to a financial person at Children's Hospital, he told her our income, and she said that when we first applied, we would be refused, and then we would have to do a special appeal that gave the details of Janey's disability, so she would get a special type of Mass Health for children with disabilities.  However, I don't think the woman realized we have 3 kids, not 1, and our income was actually within a range where we qualified for state help without Janey having any disability.  So the insurance was approved for her with that initial application, but approved as a type that is used as a primary insurance, not the special disability kind.

If the above paragraph confuses you, you are not alone.  I guess fixing this kind of mix-up is extremely tough, and requires all kinds of sending papers here and there and somehow getting through to the right people.  I wish I had gone with my feelings over the past 10 years and never applied.  The expert also told me that both insurances, our federal Blue Cross and Mass Health, don't cover special autism services anyway.  This is despite the fact there is a federal mandate for insurances to cover autism services, but there are many, many exceptions, and strangely enough, federal Blue Cross is one of them.  So there you go.  It's another example of what might be perceived by those outside of the autism world as "all those services out there you can get", which is reality either don't exist or are not accessible.

Despite the discouraged tone of this post, I am doing fairly well.  I am not dreading Christmas---I am actually feeling a bit of spirit, more than in the past few years.  Maybe it's because, as the song says, "I need a little Christmas"  Maybe it's because so many people have been so kind to me over the past year, and even when things are this tough, that has given me an inner resolve, an inner core that I am able to reach to most of the time.  Maybe it's the music, which even on Janey's worst days is one of her favorite things in the world.

Here's a picture of Janey's smile, from yesterday.  Her beautiful smile, even on days when I don't see it, is another reason I keep getting up on the morning.

Trying a School Day

Janey went off on the bus this early morning.  It's the first day she's gone to school in a month and two days.  The road leading up to today has been long, and I am not sure she'll be there all day, but I am hoping this is the start of a bit of normality in our lives.

Over the weekend, Janey was tough.  There was a lot of screaming and crying.  Sunday, she lashed out at Tony for some of the first times ever.  Usually he is spared her anger.  She hit him hard, and then tried to bend back his fingers.  As is more often the case, there was completely no warning.  She was just fine, not even upset, and then she lashed out.  It makes it all the more scary, because you can't brace yourself, you can't prepare a reaction.  It just happens.

We decided on Sunday that we couldn't in good conscious put Janey on the bus on Monday without talking to her school more.  I emailed her teacher and ABA supervisor, and amazing people that they are, they wrote me back on a Sunday to say we could have a meeting Monday at 9, and could bring Janey for a visit then.

Tony took Monday off to be with me.  We were worried how Janey would act as she saw the school, since her last memory there wasn't a good one---leaving in the ambulance.  But she was very cheerful as we approached.  We met with four people that work with Janey---her teacher, her ABA therapist, the ABA supervisor and the autism specialist that is assigned to her classroom group.  They are an amazing group of people.  They listened to all our concerns, we planned together how we would handle various situations, and we laughed.  That is a crucial piece for me somehow---that I felt at home and comfortable enough with these wonderful women that we could engage in a little black humor.  In talking about Bradley Hospital, I said part of why more didn't happen there might because Janey was there over Thanksgiving, and she should plan her next crisis for a little better time of year---I was full of weak humor like that, but it was so good to just be able to talk about it all in a relaxed and open way.

The plan we worked out---Janey would go to school on the bus today, and last as long as she was able.  If things were getting to be too much for her, and she was getting increasingly frustrated, the school would call me and I'd go get her right away.  We'd avoided that in the past to not give Janey the idea that acting out was a way to go home early, but at this point, that is one of the least of our worries.  If Janey's behavior ever was such I couldn't safely drive her home, I'd stay with her at the school as she calmed down, until it was safe to drive.  And if things escalated even more, and we again ever needed to call an ambulance, the school would talk to me first, and if we all agreed we needed to call, Janey would be taken to one of two other hospitals besides Children's Boston, hospitals we have realized are better equipped to handle kids with autism.

We discussed Janey's lashing out, and everyone is aware how closely she needs to be watched, and what the warning signs are for her outburst, and how sometimes there are no warning signs.  The school is ready and willing to work with her despite these issues, and that brought tears to my eyes.

So---we sent her this morning.  It was touch and go for a while.  She didn't want to wake up.  The bus comes early---about 6:20 this morning.  Janey fought getting dressed quite violently---taking her shirt off over and over, kicking off her shoes, screaming.  What finally calmed her down enough to dress her and get her on the bus was that old faithful---Christmas songs.  She started singing "Santa Claus is Coming to Town" and I picked up on it and sang it over and over, and then switched to "Jingle Bells" and "Joy to the World"  The familiar words and tunes seemed to make Janey able to calm enough to get ready.  By the time she got on the bus, she was smiling.  The driver and the two aides were so happy to see her and so kind and sweet to her.  We are feeling, as we often do, very lucky to be part of the Boston school system.

And so I wait, for a call to get Janey, or for her bus to bring her home.  I wait to see what kind of day she had.  We wait for the next crisis---hoping there never is one, but preparing and making decisions in case there is.  We keep on going, because that is what we have to do, and we try to be hopeful.

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.

The day it all hit me

It's funny how the mind and body work when you are in the middle of a crisis.  There must be some kind of system that kicks in that lets you keep going when normally you would have collapsed on the floor, overwhelmed.  That system was in high gear from last Friday until yesterday.  It's not that I didn't cry some or feel exhausted, but I was functioning.  Last night, the system wore out and I was hit hard.

I was okay yesterday morning.  I did housework and laundry and dishes, enjoying the feeling of doing everyday work again.  We drove to Providence to see Janey midday.  Freddy came too, to see her in the new hospital.  The drive went quickly---we are figuring out new routes to take, and it's a pretty straight shot to drive there, although a long straight shot.  We are starting to know the routine, how to check in, what not to bring into the hospital, where the long locked halls lead, all that.

Janey looked well cared for, which was great to see.  Her hair was clean and brushed, and she was dressed in her nice clothes.  She seemed much quieter, calmer overall.  We visited with her in her room, as we are required to do.  She seemed happy to see us.  We brought her her toy Olivia and Beanie Baby style My Little Pony, and we played with those a bit.  Then I sang her some Christmas carols, letting her choose what I would sing next.  She looked at me with the look I only see when she is totally overcome with music---a look of wonder and amazement, as if she can barely believe the perfection of the songs (not my singing!)  When I sang "O Little Town of Bethlehem", she kept repeating the line "yet in thy dark streets shineth" and I sang that part over and over.

After a while, she was getting restless and started asking for the kind of things she asked for in the hospital, over and over..."Want to take a shower?  Want to watch Olivia?  Want bacon?  Want take off socks?"  We realized it was probably time to go, before she got more upset, and we told her we were going to say goodbye.  She said "Put on shoes?  Go to Mama's house?"  If there is a moment when a parent has their heart broken, that is it---when your ten year old daughter, in a locked psychiatric ward, asks for you to take her home.  I hope I never again feel what I felt that moment, and I hope none of you ever have to feel that feeling.

We took her back out to the ward---the area they seem to spend weekend days in, outside her room.  I won't write much about the other kids there, because it is not my story to tell and I respect their privacy, but I will say Janey was the only girl I saw, and also the only child that seemed to talk.  She stood out, as it feels like she has done all her life.  I wish so much sometimes I could gather all the girls together that I have met through this blog, that we could get our girls together in a room so Janey for once could have peers like herself.  Maybe someday that can happen.  But for now, it so often feels like Janey is very alone.

After we got home, I did mindless things---watching some Star Trek, reading, knitting.  Tony was working on a long, long application we have to do to try to get state supplemental insurance for Janey, to help with the bills that will soon start rolling in.  At one point, he asked me for a little information for the form.  I found I couldn't answer.  I couldn't think.  I couldn't put together simple sentences.

Tony quickly realized what he was dealing with.  He stopped asking any questions.  He made me some hot chocolate, and then, a French bread pizza.  He comforted me as I collapsed into my bed, crying and crying.  I am incredibly lucky to have a husband like him.

Later, my rock of a friend Maryellen called me, and we talked for an hour.  She listened to my teary account of the visit to Janey.  That is so important---to have someone I can pour my heart out to, someone outside the family but still very connected.  I am so lucky in the support I have, from friends like Maryellen, from my family and from my extended blog family.  I truly want you all to know that---how much you all have helped.

Today I feel stronger.  I am sad we will probably not visit Janey today.  The Patriots play in between where we are and where she is, and traffic back and forth becomes a nightmare.  I would not let that keep me away, but I think also Janey might need a day without the confusion our visits seem to bring.  I hope I am right there.  I know she is in the place she needs to be, but I miss her so intensely.  It is not the normal course of things to have your little girl so far away, literally locked away.  My life has taken a turn which is often feeling surreal.  I need to get through this.  I think today, I will retreat to gather strength for the next round, to go on and keep on fighting.

Autism Acceptance...Thinking It Through

I'm not much of a trend follower when it comes to autism.  I don't generally sign onto any particular philosophy or treatment plan or diet or "cure".  If I were forced to pick an approach to pledge allegiance to, however, it would most likely be autism acceptance.  The meaning of that, as I see is, is accepting a person with autism as they are, valuing them for how they act and function rather than what they might be able to become if changed.  This philosophy fits with how I raised Janey's siblings, for better or worse.  With both boys, there came a point when I realized there wasn't really a thing I could do to change their basic make-up, and that in fact I would not want to.  Realizing that logically led to doing some things differently.  For example, my second son and I used to battle daily over homework.  He would have a lot of it, but would put it off, refuse to work on it, get angry when I mentioned it---the fights were truly putting a wedge between us.  I realized I didn't want that to be our relationship.  So I let it go.  I stopped having anything to do with his homework.  I left that part of his life up to him.  And he took responsibility, but even if the result had been him not ever doing a lick of homework again, that was something I had to accept.  I wasn't willing to have his teen years consist of one big endless fight.  The same general scenario played out many times in parenting both boys, and I learned that you can't change your kids.  That doesn't mean you let them act any old way.  I am pretty old school in insisting on politeness and respect, but that is insisting on a behavior, which to me seems different than insisting on a personality trait.

So how does this tie into Janey and autism?  What can I do to show her that I accept and value her as she is?  How does this work with a child who is not usefully verbal, who cries for long spells, who can't spell out to me what she is feeling?

An incident this weekend let me to a lot of thinking about acceptance.  I was trying to work on typing with Janey.  I've heard about other girls (and boys) who seem similar to her learning how to type, and being able to tell in amazing clarity what they are thinking.   Janey has hated any attempt of mine to get her to try iPad communication programs, and I thought I'd take a new route.  We sat together and I encouraged typing on the keyboard.  Janey responded quickly---by going up to the top right of the screen and clicking on the little "x" to close the program.  She's got some good computer skills.  I opened it again and she closed it again.  We went back and forth about 6 times, and finally she started to scream.  This is very similar to the many times I tried various communication programs on the iPad with her.  It's not that she doesn't like the iPad or the computer.  She loves them both, and uses them with complete ease.  But she hates to be directed.  Left to her own devises, she'll try everything on the iPad, and explore YouTube for hours.  But if I step in and try to have her work on what I want her to, she shuts down---literally shuts down the program and figuratively shuts down mentally.

So I gave up on the typing.  I decided to tell her so, directly.  I said "You don't seem to want to type with me.  We won't do that for now.  If you want to try it again another time, we can, but it's up to you"  The look she gave me---I wish it was recorded.  It was a wonderful look---a look of relief and amazement.  And she started to sing.  She sang three verses of "Hark the Herald Angels Sing", in her angelic voice.

I realized, on reflecting, that Janey does communicate pretty well.  She doesn't communicate the way I am trying to get her to, but she was pretty plain in what she was saying.  She closed the program, over and over and over.  She cried when I kept trying to force her.  And when I told her we would stop, she sang one of her favorite songs, a song that talks about glory and peace.

What if I choose to accept Janey--fully?  What if I don't make that acceptance dependent in any way on her changing?  What if I accept the crying spells?  What if I accept her quirky interests?  What if I believe her when she tells me what she wants and doesn't want to do, even if it's not in a direct way?  What if I assume she does understand what she wants and what I want?  I will still insist on politeness and respect, as far as she is able to provide those.  She's not going to bite us, or fling things on the floor, or get her way if she wakes in the night wanting the TV on full blast.  Accepting kids doesn't mean letting them do whatever they want.  It has everything to do with respecting her while insisting she respect others.  It has to do with listening to what she has to say, no matter how she chooses to say it.  It has to do with letting her be who she is, because she is amazing, right now, right the way she is.

Christmas Blues

I know I'm not alone in having a hard time with Christmas.  Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds.  But I'd dare to say it's harder for parents raising autistic kids than it is for most.  I've been feeling it a lot this year---a very lot.  I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way.  I've been trying to figure it out---why especially Christmas?  I think it boils down to the isolation autism brings.

"Christmas is for children".  That's a phrase you hear a lot, and something I believe.  Once you are an adult, your main role is giving a great Christmas to your kids.  But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas?  That is Janey.  I am quite sure I could skip the whole bit and she wouldn't care.  I could not have a single present for her under the tree, and she wouldn't even notice.  I could not have her hang a stocking for Santa, and it wouldn't bother her a bit.  It makes it all feel a little meaningless.  I will still have presents for her and a stocking, of course, but who am I doing it for?  I guess it's for me.  In a way, she might be happier if I DIDN'T give her a present or have Santa come.  She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then.  And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for?  (especially if you aren't very religious, and I am not)

All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes.  It's yet another part of life that autism steals from both Janey and me.  Writing this, I feel sort of petty.  I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot.  So why is it so hard now?  I can't really explain.  Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst.  Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is.   Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life.   But a big part of it is sadness for Janey.  I am sad she can't anticipate Christmas.  I am sad that presents scare and not delight.  I am sad she will almost certainly never have children of her own to give a Christmas to.  I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine.  I am sad for all that Janey will never feel or experience.

It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas.  I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey.  I hope you all have found a way, and that you find joy and peace this year and always.

One morning with Janey (and thoughts about progress)

Janey woke this morning at six, which is a pretty typical time for her.  She's been sleeping better lately, or I should say she's in a good sleeping phase, as that goes back and forth.  She woke up cheerful and singing, which is the case about half the days, and is more the case if she wakes up after having crawled into bed with Tony and me during the night, and one of us is still in bed.  I think she has a fear of being alone.  She got up and right away started her morning list of wants "Strawberry milk, please!  Toast and butter, please!  I want bacon!  I want oatmeal!"  Breakfast is her big meal, and she ate most all of those!

After eating, Janey wanted some videos, and I put them on, and changed them at her will.  She is less into Netflix lately, probably because we were having some kind of problem with the remote for a while, and it wasn't responding to her button pushes, which made her very upset.  So now she is relaying on good old fashioned VHSs, which don't fail her much!  After a bit of watching, she fell back asleep, which is another new pattern for her.  It makes it a little tricky getting her ready for school.  I put it off until the last possible moment, but she is still very annoyed when I wake her to get dressed.

Dressing goes fairly well, and hair brushing relatively well.  Janey doesn't care for her hair being brushed at all, but she now tolerates.  I say most days "I'm going to be extra gentle today" and if I skip it, she's say "EXTRA GENTLE!" and remind me.  I got her teeth brushed and her coat on and we got out the door.  However, Janey suddenly ran back in and got a book she'd been into lately---a Wo Wo Wubsey book called "A Tale of Tails"  I asked her if she wanted to take it in the car, and she excitedly jumped, happy I'd figured her out.

The ride to school was great, as it's Christmas music season!  We listened to a Boston Pops singalong of modern Christmas songs, which ended with a big doing of "Jingle Bells"  Janey was clapping and smiling and laughing, and I loved seeing it.  She was so thrilled just to hear the songs she knows, and appreciative of the arrangement.  I love seeing her enjoy music!

When we got to school, Janey insisted on bringing the book in with us.  That made me very happy.  It's recent she's falling in love with certain books, and I couldn't be more thrilled.  I have used the methods I used with the boys over the years to try to get her to become book obsessed---having many, many books around the house, always dropping everything if she wants to be read to, leaving books she might like where she'll find them on her own, instead of trying to force her to listen to them, and not treating books like they were made of glass---letting them be as freely used as toys would be (A million thanks to Mary O'Grady Leonhardt, whose book Keeping Kids Reading has inspired me so much so many times---she reads this blog, and it's to me like having one of my idols read it!)  These methods seem to be finally paying off with Janey, and she's developing a huge attachment to some books, and wanting them read over and over.  With the recently discovery she can at least read some, this means even more to me.

Janey walked into the school with a smile, holding her book.  One of the sweet girls from her class saw her and walked down with us to her room, and Janey entered the classroom as happy as could be, book in hand, ready for her day.

On my drive home, for some reason I started thinking about progress.  On the outside, it might seem like Janey hasn't made a lot of progress over the years.  If you went strictly by test results, by speech, by graphing charts, it would look like she hasn't.  She still doesn't talk much.  She still couldn't pass a test requiring basic preschool skills like knowing shapes and colors and letters.  She isn't fully toilet trained.  She doesn't dress herself well.  She requires watching every second.  She is still very, very autistic.

However, thinking about the morning, I realized that there is actually a lot of progress that has been made, in less tangible ways.  From sleep getting a little better, to her tolerating things like hair brushing, to her letting me know she wanted the book with us, to her love of music being ever more shared with others, to her happy entry into the school and her smile at her friend, to just being more consistent, more predictable, more present---the days are easier than they used to be.  She is still very tough.  If you compared her to other kids her age---well, that would be depressing.  She is still intellectually disabled.  However, through her own maturing and our own increasing ability to understand her, she is progressing.  She's making significant progress, in ways that can be felt more than quantified.  An ordinary morning, broken down, is a series of little moments of progress.  You go, Janey!

The Huffington Post article

Last week, I was interviewed for an article about autism in girls by a reporter from The Huffington Post.  Here's the article--- link.  Being interviewed was an interesting experience!  It was much more nerve-wracking than I had ever pictured it being, not because of the reporter, who was very nice, but because I think I do better writing things down than talking about them live.  I can think about what I write here, but when talking, that internal edit has to be done much more quickly, and I kept worrying I'd say something wrong.  We talked about a lot of things, but the quotes in the article of course were mainly about the thrust of the topic of the article---how autism in girls is rarer and sometimes less easy to see.  I told the reporter before the interview I wasn't sure I was the ideal person to talk to, because Janey's autism isn't subtle.  Strangers on the street can diagnose her.  But the article is actually making me think more about why Janey wasn't diagnosed until she was past 3.  I don't think she was autistic before that.  I think she regressed.  But I know, from what I allow myself to think about before she regressed, that there were subtle little differences in her.  She talked much more to me than to others, and even close friends have told me they questioned how well I said she could talk.  She had a few odd behaviors, and once in a long while, I'd have a moment of wondering---is all okay here?  And there was her very, very late walking.  She didn't walk until she was past 2.  Was that just slow physical development, or something more?  It's very possible that her being a girl gave me just that extra bit of blindness to what was coming.

One thing I did want to clarify from the article is it saying Janey is non-verbal.  I didn't say that to the reporter, but I can understand why she might have thought it (if she didn't read my blog much).  Janey is certainly low-functioning, and a lot of autistic people who are low-functioning are also non-verbal.  But Janey does talk.  She is not really very FUNCTIONALLY verbal, though.  Her talking is of a limited kind.  She requests things, which is great.  Most of her talk is in this formula "I want bacon.  Bacon, please.  Bacon"  You can put anything else in the place of bacon, but she say it in that same way every time.  The rest of her talk is mostly delayed echolalia.  She recites parts of videos, TV shows and sometimes things people have said live to her.  Sometimes, she does this in a way I call in my head "cut and paste" talking.  She picks from her store of lines something that has relevance to what is going on.  For example, if she's made a mess and we are cleaning it up, she says a line from Kipper "I can't play with you right now.  I'm cleaning up YOUR mess!"  Or if she's in a hurry to get something to eat, and we are taking too long, she says "Wait for the milk!  Wait for the milk!", another Kipper line.  Janey also sings a great deal.  Her singing has never been affected by her autism, in that when she regressed in other ways, it didn't seem to affect the musical part of her brain.  She can sing probably thousands of songs, in perfect tune and with all the lyrics.  It's never done on command.  She's like a iPod set on random, with a song she might have heard years ago suddenly popping up.  The exception is Christmas carols, which if I start one, or even just say the name, she'll usually jump in and sing.  Her love for Christmas music is a huge part of her life.

If you are reading this blog for the first time after finding it from the HP article, welcome!!  I am thrilled and amazed, always, to have people from all over the world reading what I started out as just kind of an on-line diary of life with Janey post-diagnosis.  It's turned into something more---a way for me, and I hope for others, to feel less alone, to know there are others out there with autistic girls, all of us doing the best we can.  I hope if you are new to this sometimes lonely journey, you will find a place here to help just a little.  I'm thinking of all of you, and, on this pre-Thanksgiving day, thankful to all who journey along with me.

The Heights and the Depths

Yesterday was a great example of one of the most exhausting and mysterious things about how autism shows itself in Janey.  It was a day that was a mix of her worst and best, see-sawing back and forth all day until we were left exhausted, unsure whether to laugh or cry, despair or rejoice.

Let's do a run-down.  Janey woke up in a bad mood.  She woke up screaming and screaming, for no reason we could figure.  It took about an hour to calm her down, during which she kept attempting to bite her arm.  Once she finally relaxed, we had a good hour of hanging out, eating breakfast and watching some shows.  Then we all headed out to my favorite thrift store and various other errands.  Janey got into a mood in the car for a while, crying and crying.  We were pretty much figuring the day was going to be a disaster.  She wasn't happy at the thrift store, so Tony and Freddy took her for a walk while I shopped.  She got cheerful enough during this walk that we decided to go to a hot dog place near the store.  It's slow fast food---you order, and it takes a while to get brought to you.  As it was early in their day, this time it took quite a while, maybe 20 minutes, and Janey was a joy.  She sat there patiently and happily, listening to the radio, looking out the window, as good as you could hope anyone would be.  She didn't eat much, but we all had a very nice meal.  Then we went to Trader Joe's and a computer store near there.  Janey did not care for the computer store Tony took her in while I grocery shopped.  She didn't care for it so much she freaked out and tried to bite Tony on the face.  Freddy took her out and brought her to the crowded Trader Joe's with me.  The crowds bothered her not a bit, and she walked around with him fairly happily, looking for her "ham", the fancy salami she likes there.  We ate it on the way home, a good drive.  Once home, she again had a lot of fits, crying, tossing things around, furious at us.  I finally toward evening in desperation gave her my iPod to hold and put it on Bluetooth with some speakers I have.  She caught on right away that she could wander the house, changing music as she pleased, and for probably 2 hours, she was happier than happy.  She played some of her favorite songs over and over, including maybe 10 go-throughs of a current favorite, Funkytown.  She and Freddy danced, Janey doing the instinctive right moves as she so often does.  She looked like she was in a disco.  Later I played her the chorus from The Messiah.  That was the highlight of the day or most any day.  She stopped moving and stood listening with a look on her face that was beyond words, a quiet joy and amazement.  She's heard the piece before, but not for a while, and it was simply one of the best moments I've ever had to watch her experience it.  I don't think anyone could love music more than Janey, whether they are the most experienced and knowledgable musician on earth.  After the music time, Janey fussed her way to sleep, demanding this and then that and finally falling asleep very, very late for her, about 11 pm.

So we go in one day from scenes like a lunging biting attempt in a store, a prolonged screaming and crying fit in the car, several tantrums, but also a near perfect meal out and a glorious time with music.  How is it all explained?  What drives Janey?  What happens?  I could think we shouldn't have taken her to as many places as we did, but it wasn't that straightforward---she was better for the ride home than the ride out.  I could say we should have insisted on an earlier bedtime, but it's the weekend, she almost never stays up late, and the hours with the music were among the best we've ever had with her.  We could say we should have given the day more of a routine, but some of the toughest parts were the parts where everything was calm.  When I think I've got some aspect of Janey's moods figured out, she proves me wrong.  I don't understand her.  I don't know if I ever will.  She is intense, driven, angry, angelic, mysterious, sad, joyful---she is not an easy girl to understand.  Tony and I have joked about our three very different but all unusual kids, wishing that we had had just one boring child.  That's not the path we've been given  We are doing the best we can, Janey.  I hope someday, if you can read this, you'll forgive us for the times we were overwhelmed by you.  You are an amazing girl.  I hope we can help you find your way.

Christmas night

So Christmas 2012 is almost over.  As is almost always the case on Christmas night, I feel a little let down.  There's such a buildup to Christmas, and it's over so fast.  But it was a very nice one.  We had a great day, and gave the kids more presents than we usually do---we are usually very restrained in that, but I decided this year to put more focus on getting them, especially the boys, things they wanted and needed.  It was fun.  We had a huge amount of special food, a great visit last night with our dear friends for Christmas eve, Janey and I had as much Christmas music all year as can be imagined, and overall, it was a very good Christmas.

The picture is Janey watching the Christmas karaoke VHS we watch every year at our friend's house.  It's kind of a joke with the kids now, as it's very hokey, and has very cheap visuals, and does strange versions of each song, and then once they've done the long, long song, a screen comes up that says "Now everyone sing!" and we sing it all over again.  Lots and lots of laughs, but lots of fun singing together too.  Janey had been napping, and woke up when we were singing, and she was in heaven---it was her dream to wake up to a room of people belting out Christmas music!

Still, with all this being said, there is sadness for me at Christmas.  I don't think it will ever totally go away.  Janey has no real awareness of the holiday traditions.  She doesn't get Santa, she doesn't have any curiousity or interest in her presents, she can't count the days until Christmas, she isn't sad it's over because in most ways she didn't really understand it was here.  She was manic in the night, laughing hysterically for hours, probably because we weren't careful and forgot and let her have lots of chocolate milk, and chocolate and other caffeine is the one solid food connection I've ever found with her---it makes her crazy way out of proportion.  She cried at points today.  We were all exhausted by afternoon, but we couldn't nap, because she had to be watched.  She had pullup issues.  She was, basically, herself.  And she always will be.  She is delightful, sweet, interesting, but she is also autistic and intellectually disabled.  She is never going to get Christmas the way I dream of.  Like so many things, it's my dream, not hers.  It's my sadness, not hers.  But my latest way of thinking is to admit the sadness, and try to move on from it.  It makes me sad that she doesn't understand Christmas.  It makes me very sad.  But Christmas isn't her getting it.  Christmas is, in the words of the Grinch, a little bit more.

An emotional day

Yesterday, like most Americans, I heard the news about the shooting in Newtown and responded with pure horror.  I just couldn't even quite wrap my mind around it.  I felt numb, sickened, like throwing up.  I sat there blinded and just not ready to admit what had happened.  For some reason, I felt compelled to decorate the Christmas tree.  As I put on the angel and peace and manger ornaments, I cried, with the news on in the background.  I kept thinking of a line from my favorite Christmas carol---"I Heard the Bells"---the line that says

And in despair I bowed my head
“There is no peace on earth,” I said,
“For hate is strong and mocks the song
Of peace on earth, good will to men.”

It can feel that way, a lot of times.  There is evil in the world.  We can't understand it, we can't quite even grasp it.  But it's there.  However, I truly believe there is more good than evil, much more good than evil.  I see it every day, with the people that care for Janey, that love her.  I see it in Janey herself---an innocence that will never go away.  I see it all over.

Of course, my mind went where I wish it hadn't.  What if it had been Janey at that school?  I saw the pictures of children leaving the school in a line, and thought about how Janey would not understand orders to do that, that the noise of bullets (and how sickening to even have to picture this) would scare her, how she would scream if a class was trying to be silent to avoid being shot (and why, why do we even have to think of such things?)  I thought of how she can be confused and overwhelmed by the smallest things, and I cried.

However, I also thought about how Janey will never really understand evil.  I heard advice on talking to your young children about the shooting, and I felt an odd relief that I didn't need to do that.  Janey knows nothing of what happened, and she won't.  Her autism protects her from some of the worst of life.

The day ended on another note, a very happy one.  William got his first college acceptance letter!  It was to Clark University.  He is applying to 13 other schools, and so hopefully this is the first of more, but the first letter is a huge deal.  We hugged him and cried for happiness.  I remembered the little boy that long ago carried a (wrong) diagnosis of autism, the boy who struggled for years, and who was helped beyond measure by the love of good teachers and (I hope) our love of him, and his own strength.  It felt like another reason to hope---that love and caring can work.  I am so proud of him.

And we go on, trying to understand a crazy world.  We hold our children and wish for them a life free of hate and evil, a life where love triumphs.

Motivated to get it wrong

This morning, I worked with Janey on an on-line reading program her school uses and that you can use at home, Lexia.  Janey was happy to use it.  She was familiar with it from school, and was able to use the mouse pretty well and do the activities it asked her to.  At her level, it's mainly picking a letter, hearing how it sounds and what kind of words it is used it, doing a little game like a puzzle or a find-a-letter picture and then listening to two words and picking the one that starts with the letter you are working on.  Janey did well until that last part, and I noticed something odd about how she did on that part.  She got the answer wrong EVERY time.  There were only 2 letters to pick from, and the program was smart and moved them around after you got it wrong once, and pure chance would say she'd sometimes get it right, but she didn't.  And I soon realized why.  If you got it wrong twice, the voice said "Let me help you think about this" and then picked the answer for her.  Janey echoed "Let me help you think about this" in the exact tone of the computer voice, and laughed like crazy.  She had quickly figured out how to get what motivated her, by not getting the answer right.

That made me think how often something like that happens with Janey.  She isn't motivated to get things "right", whatever our notion of right is.  She isn't motivated to make other people happy.  She's motivated by herself---by what makes her happy.  So she'll spend long periods of time doing what look to me to be boring apps on the iPad if they make a sound she likes as a reward.  She'll work to get at foods we don't want her to have right then, if she can get a bite or two before we start all the yelling and showing her what a mess she made.  She doesn't care we are upset---she got what she wanted.

It explains a lot what makes learning hard for Janey.  It might not even be so much that learning is hard---it's that motivating her to learn is hard.  She can do quite complicated things when she wants to.  She's pretty much figured out Netflix instant viewing.  She knows if she wants strawberry milk, she needs to bring me milk, the strawberry powder, a glass and a spoon.  She can somehow "read" the VHS tapes, even ones without pictures, if it results in the right one being put on.  She knows the words to every Christmas song out there, and if you'll sing with her and leave out words, she'll show that.  But things she isn't motivated to do?  No way.  It's why giving her little rewards like M&Ms can bring out knowledge we had no idea on earth she knew, like the time she spelled her last name or said which brother was bigger.

And that's the challenge of autism and learning, right there.  How do you get your child to WANT to learn the things they need to learn?  I usually have no idea.