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Thursday, March 31, 2016

What I wish I could have told the mayor

There was a meeting today at Janey's school to let parents meet the mayor, and talk to him about how the budget cuts would affect our kids.  I appreciated the mayor coming to the meeting (along with a lot of his staff) and I think he's a decent guy.  But a lot of the meeting felt like politics as usual, like broad statements about the future and a vision and tough decisions and a lot of other key words that don't add up to a lot.  We each had a chance to say briefly who we were and what our thoughts were about the cuts (which in Janey's school will result basically in one extra child in each class, bringing the cap in the autism only classes from 9 to 10), but other than that, there wasn't a lot of time for discussion, and what there was, as is often the case, was dominated by a few parents.  I sat there thinking of all I wished I could say to the mayor, if I had his ear.

I'd want to tell him, to start with, that adding just one kid to a class like Janey's is a very penny wise pound foolish move.  I'd want him to understand that Janey hangs on to being able to function in a her classroom as it is now by a thread, often.  She has great teachers and great therapists and a great support staff, a caring principal---we are lucky.  It's not that they aren't doing all they can with what they have, it's more that any kind of classroom is tough for Janey, and for the other kids in the class to get the attention they need, Janey needs someone right with her most of the time.  I've never pushed for a one on one aide.  There are only 7 kids in the about 160 autistic kids at her school that have one (a statistic I learned today).  Janey should probably be among those, and I would guess one or two of those (not kids I know in any way, just a guess) are the result of better parent advocating than I do and not a greater need than Janey has.  If the class has another child, especially a child with a lot of need for supervision, that might be the tipping point where Janey is not able to learn, or not able to be controlled.  It could be a safety issue, or at the very least, a happiness for all involved issue.  I've never pushed for an outside placement, really.  I don't want one.  I want Janey to go to school where she is.  But if it ever became obvious that just wasn't working, I would do what I had to do, and that might cost the schools a lot more than what she is costing right now.

I would want the mayor to understand autism in all its forms.  He used a lot of acronyms, and he has worked with autism groups, but unless he's spent a lot of time with a variety of kids with autism, he mostly likely, in fact almost certainly, doesn't really get them.  He doesn't get the wide reaches of the spectrum, he doesn't get how inclusion doesn't work for every child, he doesn't get how even a small amount less time at school might make a huge difference at home, he doesn't get how a tiny change in routine can be a disaster.

I want the mayor to know he should listen to more than the squeaky wheel.  I think politicians sometimes operate on the assumption that people are going to complain if something is wrong.  Well, if you can't speak, you can't complain.  If you are a parent of a child with autism, and you are just barely hanging on, and you haven't slept for nights, and you have no child care whatsoever, you aren't going to go to budget meetings or rallies.  You need help, but you don't know who to ask or what to ask for.  I want him to want the best for kids like Janey, even if their parents aren't expert advocates.

More than anything, I would want the mayor to know what a great kid Janey is.  I wouldn't want him to look at statistics about a child like her and assume she isn't important.  She can't talk much, she will not go to college, she won't raise your test scores, she won't hold a job.  She is going to need help all her life.  But she is worth it.  She is beautiful, she is funny, she is interesting, she is deserving of love and services and caring and tax dollars.  She is a citizen of the fair city of Boston, as much as anyone else.  I hope the mayor, and everyone else in a position of leadership, understands that every single person, regardless of diagnosis or income or position or ability to demand, is worth caring for.

Monday, March 28, 2016

Through the years we all will be together...

Easter Sunday was quiet at our house.  We don't visit family or friends, we don't go out to dinner.  Janey can't be around younger kids much, due to her aggression at times, travel to far flung loved ones is tough, and eating out...well, it's not worth spending a good deal of money to rush a meal, waiting for the meltdown.  So we stay home.  And truthfully, it's okay.  We are loners a bit.  But this year, both Tony and I were feeling a little emotional about our Easter.  It took us until about halfway through the day to realize it was the first year with neither boy home.  Our family felt small.

Janey was in a good mood all day, though.  We had fun early in the day taking a long ride into the city.  We love early Sunday rides, with little traffic.  Boston is a great city, when you take away the traffic nightmares, and we enjoyed driving through some neighbors, like the Little Italy of Boston, the North End, that we don't often see.  We all had some chocolate (Janey's early in the day, to prevent non-sleep!) from huge chocolate eggs that Uncle Pino gave us, and Tony got some of our favorite Gimbel's jelly beans.  It was a fine day, but I was still feeling low.

We aren't very religious, but I certainly wouldn't mind going to church on Easter.  We haven't found a church, though, that we can go to with Janey.  We want church to be a family thing, like it was with our beloved Hyde Park Congregational Church that shut down when Janey was two.  But there is no way on this earth Janey could be at a service, and there is also no way she could attend Sunday School without someone one on one with her.  So, we don't go to church, and that feels a little funny on Easter too.

Looking at Facebook during the day, I of course saw many pictures of kids at Easter gatherings.  I didn't make up an Easter basket for Janey, because she has never had any interest at all in that (or stockings) and because we would end up eating all the candy she didn't want, or she would end up eating chocolate bunnies and not sleeping for a week.  But I decided I wanted to take pictures of Janey for Easter.  I love taking pictures, especially of Janey.  I got out my iPad and used the Hipstamatic app, which has all kinds of virtual lenses and film that it picks at random each time you take a picture.  I adore it.  I took about a hundred pictures of Janey, to see what got picked and how they came out.

While I was in the middle of taking pictures, suddenly and unexpectedly, Janey began to sing.  She often sings a few lines of songs, but it's rare she sings the whole song, although she knows many by heart.  This time, however, she did.  She sang "Have Yourself a Merry Little Christmas", the whole song, in her otherworldly high and perfect singing voice.

I try hard on this blog to portray autism honestly.  Autism isn't a series of miracles, a savant hidden in an unexpected place, a innocent showing us all the way.  But in every child's life, including Janey's, there are a few moments that take the breath of parents away.  Janey's singing yesterday was one of them.  As she sang "Through the years, we all will be together, if the fates allow...", I cried.  And held her close.  She had sung the song, that, if not seasonal, most perfectly captured the mood I had been feeling all day.  For that moment, our troubles were indeed far, far away.

Saturday, March 26, 2016

Good Friday, an IEP meeting and telling Janey a story

Janey had Good Friday off from school.  We never did, growing up in Maine, and it catches me a little by surprise every year.  

Days like that, single days off that aren't federal holidays so Tony has to work, are hard days with Janey.  This year, though, I realized I was dreading the day less than I had in the past.  It's not that Janey has been in a particularly good mood.  There's been a fair amount of screaming and arm biting lately, for causes unknown.  But I don't feel in despair when this happens as often any more.  I think I finally feel confident that if I work at it, I can calm Janey down, at least for a while.  That's a combination of lots of things, I'm sure---her maturing, the school's hard work, Tony and me gradually becoming Janey-trained---lots of stuff.  Whatever it is, I am glad of it.

The day before Good Friday was Janey's IEP meeting.  I've been to a lot of IEP meetings in my life, more than most people, I'd say.  Every time, I leave feeling grateful for all the people on Janey's team.  They seem to get her, to love her, to truly want her to succeed...they are good people.  

For the first time, though, I'm going to have to probably reject a part of the IEP.  At the start of the meeting, as always, I was asked what my particular concerns about Janey are right now.  I said what's been on my mind lately---that I want a full court press to help Janey communicate, to be able to tell us what is on her mind, particularly in the areas of emotions and health.  I want her to be able to express why she gets so upset, and to tell us if she is in pain.  These are not idle wishes, they are possibly life and death things---thinking about Janey's appendix rupture, and thinking about the levels that Janey's furies and tantrums can reach.  The speech therapist, for various reasons, proposed lowering the amount of speech therapy Janey gets.  No matter how I look at it, I can't see this as a good idea.  She said she felt this would give Janey more time in the classroom to learn functional life skills.  But I feel that we can teach her skills at home much more than we can give her speech therapy at home.  So, I said during the meeting that I will be opposed to the lowering of that service, and everyone was very kind and understanding (and although they can't say so, and didn't say so, I think there was some agreement in the room with my feelings)

Keeping Janey happy on Good Friday, I kept with the theme of trying to help her express herself. After one outburst, as I cuddled Janey to calm her down, I told her a little story---an idea prompted at the meeting by everyone telling me how well Janey responds to being read to (which I wish she did at home!)  I said something like "Once there was a girl named Janey.  Sometimes she got VERY angry and screamed a lot, and bit herself.  Her mama and daddy didn't know why she was so angry, because Janey didn't tell them with words.  Her mama and daddy can't see inside Janey's head.  They don't know what she is thinking.  So when she doesn't say words with her mouth, they don't know what's wrong.  The end"

Janey's reaction was---wow.  I didn't expect it.  She looked at me with a look that said "You don't mean it?  You really can't tell what I am thinking?  You don't know?"  Of course right there, I am saying I DID know what she was thinking, and I don't.  I'm not sure that is what she was thinking.  But the look she gave me was quite something.  It was a look of sudden realization.  I wonder if all these years, Janey just assumed I COULD know what she was thinking and feeling.  I don't expect any miracles from her possible realization that I can't.  But it's a message I'm going to keep sending.

I included the part about words being said by mouth as I think perhaps Janey says words in her head a lot, and doesn't realize they aren't audible to me that way.  Often I'll ask her something, and she looks at me like "why are you asking that?"  To her, what she thinks and what she says out loud might seem the same.

There are areas where I am ready to stop trying.  The OT at the meeting said she isn't really any longer trying to get Janey to write.  They are working instead on stamping her name.  I am okay with that.  Janey has never, ever shown the slightest interest in or skill with using writing utensils.  Her IEP doesn't include any work on learning letters.  That is fine too.  I don't think Janey is going to learn to read, at least not in a traditional way, beyond what I think she can already read.  But speech?  I think, or I hope, that Janey will learn to express herself with more ease.  Perhaps I'm wrong.  Janey's speech comes and goes, but in reality, she has never gotten back to her two year old talking level.  But I have to hold onto that hope, and try very hard to figure out how to help Janey tell us what we need to know.

Happy Easter to all of you who celebrate it!

Tuesday, March 22, 2016

The Sun Did Not Shine

Yesterday was a snow day here, a start of spring unwelcome snow day.  Janey and I were home together all day.  I spent the day working on keeping her happy and occupied.  It went fairly well, overall, but by the end of the day, waiting for Daddy to get home, Janey started some screaming.  Then she said "The sun did not shine.  It was too wet to play.  So we sat in the house all that cold, cold wet day"  As most of you probably know, those are the starting lines of "The Cat in the Hat", one of Janey's favorite books.  It took me a minute to realize how appropriate the quote was, and just what Janey was saying.  It certainly was a sit in the house all day type of day.

Talking through quotes is just one of the ways Janey communicates in what could be called non-standard ways.  It's fascinating, but it's also very frustrating.  As she gets older, and some things get easier, the communication doesn't seem to be getting smoother, and more and more, I think it's a piece we have to work on.  I can figure out much of what Janey is trying to tell me, but I am not always going to be with her.  I wish so much we could find a way to help Janey talk to the rest of the world, and talk more easily to us.  I think so much of her frustration and anger could be helped by being able to tell people more easily what she is thinking.

On a day about a week ago, a day that featured much screaming, out of desperation I found an iPad app called GoTalk Now.  It was free and easy to set up, and looked like something Janey would be able to figure out.  It let me create 3 pages (in the free version) of touch screens with words or pictures or phrases, with up to 25 per page, that Janey could touch to hear out loud.  I hoped she might use this especially for emotions.  I made a page with my own face showing nine emotions, and my voice saying the words.  Janey understood easily that she needed to touch one of the faces to get the emotion spoken, but like almost all attempts of this kind, she wasn't interested in using it to communicate.  She did, though, take to one of the buttons, me making a silly face and saying "Silly!"  She hit it over and over, and each time since then I've tried to get her to use the app, which I expanded with a page of phrases she might need and a page of names, she quickly and easily goes to the feelings back and hits the silly button.  No matter how often I try to use the other pages or the other feelings, she is interested only in hearing "silly" over and over.

Janey watching TV
The way Janey communicates which TV show she wants is illustrative of the joys and frustrations of talking with her.  If she wants a show, she brings us the remote.  We ask her what she wants, and she says the name of the show.  We put on the TV and go to the Amazon Fire TV menu, which lets us access Netflix, Hulu and Amazon Prime shows.  If she has asked for a certain show, we go to that show, and I ask her what episode she wants.  She knows the names of a few episodes of a few shows, but usually, I wind up scrolling through all the episodes and saying their names out loud.  Janey points at the TV until we get to the episode she wants, and then she points to herself.  I confirm the episode name, she repeats it, and we put it on.  If I go past the episode in the scrolling, she points to the left, to show me to go back.  It all works most of the time, but it took literally years to get to this point, and still, now and then, we don't get what she is asking for.  She'll sometimes quote a line of dialogue from the show she wants, and if we don't recognize it, she's very upset.  Or she'll say something that is in the little picture illustrating the episode.  Our favorite example of this is an episode of Kipper, which shows Arnold, Kipper's little pig friend, with his head poking out of a box.  That is called "head in a box" and the first time we figured out that one, we laughed for a good long time.

As we get through our days, figuring out if we can what Janey is asking for, guessing at her sometimes cryptic way of getting her meaning across, I worry.  I worry because Tony and I will not live forever, and I want Janey to be able to talk to a wider world.  I want her to have a way to tell whoever she needs to tell what it is she wants and needs and thinks and feels.  There is so much she has to say---I am sure of it.  There must be a way, some way, somehow, to help her communicate in a way that is more universally understood than the way she does now.

Wednesday, March 16, 2016

Scoliosis Appointment

Today was Janey's scoliosis appointment, the second in what will be a series of appointments to see to what extent her scoliosis is worsening or getting better.  It was a tough appointment, and it made me think a lot about how hard it is to truly access effective medical care for our kids.

The appointment was at eight in the morning, so the first issue was that Janey didn't go to school on the bus.  That's a change of routine, but she was actually excited about it.  She hopefully asks almost every morning if we can go for a car ride, and today, she must have thought we'd finally come to our senses and forgotten the school nonsense and just decided to take her driving.  She was cheery right up until we got called in for her x-ray.

At first, the technicians tried to give Janey a very high tech x-ray, in a booth where she'd have to stand still for thirty seconds with her hands up high while her back was scanned.  They asked me if I thought she'd do it, and I said it was a possibility.  Janey sometimes surprises us greatly with her cooperation at such things.  The last time she had an x-ray, when she was in the ER with pneumonia, she was great.  But this time---no.  The booth freaked her out.  She started screaming.  They quickly decided to switch to a more conventional x-ray, but that involved waiting for another room to be set up.  Janey and I had to wait on some chairs for a little bit.  Everyone was quick and friendly, but Janey was not happy.  She screamed at the top of her lungs and bit her arm and tried to bite me.

Thankfully, we quickly were in the other x-ray room.  Here, Janey calmed down a lot.  I put on  a lead vest and was able to hold her hand as she stood against the wall for that x-ray, and she was totally still, so they could get a good read.  I was very proud of her.

Another quick wait in the waiting room led to more screaming.  The room was full by that point of girls about Janey's age, there I am sure also for scoliosis checks too.  With Janey's screaming, I didn't have time to look at them  much, which is in some ways good.  It can be hard to see kids her age reading, having involved discussions and basically doing a lot of things Janey doesn't do and probably will never do.

Then, on the exam room.  Janey was highly agitated by then.  She wet herself, through her pull-up, all over the exam table and her clothes.  We cleaned up as best we could, and then the doctor came in.  He tried to look at Janey's back, and she twisted and turned, making it hard for him to examine her.  We tried to hold her so he could, but he said "No, no, it's not necessary"  I was annoyed at that.  YES IT IS necessary, when you are there for his expertise, for him to be able to see her.  I'm not an orthopedist, and maybe the x-ray tells him all he needs to know, but if he usually views a child's back, I want Janey's viewed too.  But in the midst of the screaming, and with him quickly moving to the computer and talking in a low tone about what he was seeing, I had to just listen and couldn't or didn't speak up.

When the doctor saw the x-ray, he asked if I'd held Janey's hand for it.  I said I had, and he said that made it hard to tell what was curvature and what wasn't.  Well, no-one said I shouldn't hold her hand.  I had done it to calm her, but that was at probably the calmest part of the appointment, and she might have been fine without it.  Again, we were there to get a good idea what is going on with her, so it's frustrating to not get that done to try to keep her happy.  Anyway, he said last time her curvature was 16%, this time it looked to be 20%, but "that's within 5 percentage points so it's really the same"  He said she still had a lot of growing to do, but then asked when she had gotten her first period (last September) and how old she was.  He thought she was 13, and when I told him she was 11, he looked at the x-ray part that showed her hip and said "she's not going to grow a lot more.  This isn't how most 11 year olds look" As runs in my family very heavily, Janey went through puberty very early and has a body that is far more womanly than most 11 year olds.  I didn't grow much at all after 11, nor did anyone in my family.  So her current just under 5 feet might be as tall as she gets.  I'm not sure how this affects the news about her scoliosis.  From what I could gather with the screaming, it might mean it's too late to do much about it.

We see the doctor again in 6 months.  I left the appointment feeling overwhelmed and frustrated.  I don't think she got the exam she would have gotten without the autism and tough behaviors.  I am not blaming anyone here.  I know her behaviors are on the extreme end of the spectrum, and that these doctors and technicians are not autism specialists.  Everyone was kind and tried hard.  But my feeling is that no matter how tough a kid is, give them the SAME CARE anyone would get, even if it involves upsetting them.  Five minutes of being upset and screaming is nothing compared to what can happen otherwise.  I think always, of course, of the horrible night when the emergency room missed Janey's probably already burst appendix, because they didn't want to further "upset" her.

I've heard from a few fellow mothers lately about pediatricians simply dropping or trying to drop girls with low functioning autism.  We are lucky in where we live.  We were able to switch Janey to a pediatrician that seems wonderful.  We have Mass General hospital, a top notch hospital with a commitment to caring for people with autism.  We have two kinds of insurance for her, and so financially can afford to get her whatever care she needs.  But still, with all that, Janey's autism limits our ability to get her the same health care another child with autism would be able to get.  Although the reasons for this are many, it's a situation I find hard to accept.

Tuesday, March 15, 2016

Staying sane while being there for Janey

Janey has calmed down a bit from some of the hard times last week.  It seems like PMS played a role, and it's kind of good to know there might have been a reason---so often, we have no idea at all what is upsetting her.

My son Freddy is home this week, and we've been talking a lot.  He's a great guy to talk to!  One talk we had made me reflect on my life quite a bit.  He talked about how when he went to college last fall, it was hard thinking about our lives back home, thinking about how tough our lives can be.  My instinctive answer was "My life is fine!"  Of course, ask me that on a bad day with Janey or a day after no sleep, and I'll give you a different answer.  But I bounce back pretty quickly, and when others have said similar things to what Freddy said, about what a hard life I have, I've given them the same answer.  I'm not being a martyr when I say most of the time, my life is pretty good.

I've been thinking about what I do to stay sane when stress hits, and the last few years, with four hospitalizations for Janey, her increasingly self-injurious and sometimes aggressive behavior, two boys starting college, the challenge of her sometimes not great sleep...there has been some stress.  But out of necessity, I've figured out things to do that help.

If I were giving advice about stress relief, the main thing I'd say is to find something you can do EVERY day, do without leaving the house and something you can cram into whatever free moments you have.  It's fine to get relief from something like hiking or shopping for clothes or going to yoga classes or whatever, but if something involves leaving the house, finding childcare, spending money...many of us with kids like Janey are NOT going to be able to do that thing regularly.

I've got quite a few at home go-to hobbies.  I love words games.  I play a lot of Scrabble on Facebook, and a lot of single player word games on the iPad.  I have also gotten into SongPop recently (a name that tune type game).  I love photography, and I take a lot of bird pictures in my back yard, as well as flower pictures and pictures of Janey.  Gardening is another stress reliever.  I can sneak outside when Tony is watching Janey or when Janey is at school, and something about digging in the dirt and watching seedlings grow is simply amazingly relaxing.  And I read.  I read a very, very lot.  I have a huge list of books lined up to order from the library, and as soon as I get one batch, I order the next, in order to never be without a book!

All of the hobbies I have are low or no cost.  You do have to buy seeds and a camera to grow flowers or take pictures, but once you do that, there isn't a lot more to buy.  Word games are free, and library book reading is too.  And all of those hobbies can be done in a few minutes here and there, stopping when I need to stop.

I am probably lucky I am basically an introvert.  I don't mind spending a lot of time at home or in fairly solitary pursuits.  I socialize on Facebook or on the phone, mostly.  I do wonder sometimes if having Janey has made me even more of what I already was---a little bit of a loner.  But even being social can be, with some adjustments, something I can do within the restraints of life with Janey.  I have an internet full of people to talk with, if I don't mind the lack of face to face.  I can go to support groups, and do at times, where I can talk to people living lives similar to mine.  And I sometimes actually get away, for lunches with friends while Janey is at school, or as I did recently, for weekend getaways when Tony can watch Janey.

Sometimes, the best times are WITH Janey, when her mood allows.  At times, we put on music and dance to it, or order takeout and eat with glee all together, or go for long car rides to see the state, never getting out of the car but enjoying the scenery.  These are all things that Janey loves and we love too.

There are days when all of this is not enough---days where Janey screams all day and even 5 minutes to play Scrabble is not possible, where the garden goes to weed and the camera stays in the case and the books don't get read.  Those are tough days.  As the years go by, I realize that I need to keep myself sane.  If it comes down to grabbing a minute to do something I enjoy or getting that extra pile of dishes done, I often pick the enjoyment option.  Some people might be able to defer fun, but those of us with kids like Janey can't always count on being able to do that.  It is good for everyone, Janey included, if I am happy, and as time has gone by, I feel less guilty about doing what I need to do to be happy.  I hope all of you have found ways to enjoy the time you have to enjoy.

Tuesday, March 8, 2016

The Very Bad Night

Trying to keep Janey happy 
Janey's great mood came to an end this weekend, a crashing, discouraging end.  When she got off the bus on Friday, I could tell she wasn't doing well, and within a few minutes, she was biting her arm and crying.  By Friday night, she was in a full-blown bad mood.  All day Saturday and Sunday, she cried, screamed, bit herself, asked frantically for one thing or another and then quickly changed her mind and asked for something else, just plain was severely unhappy.  We kept up our weekend routines, the ones she usually loves.  The big thing we do is take her for lots of car rides with music, and we did that.  We've taken to choosing one town to take a big drive to each weekend for the long ride of the weekend, and we went to Duxbury, a coastal town, on Sunday.  It was lovely, but Janey was very unhappy.  On the way back, she kept falling asleep---a very unusual thing for her to do, but she didn't seem sick.

Sunday night into Monday morning will go down in our personal family history as The Very Bad Night.  Janey woke about 1 am, after going to sleep about 8 pm.  She woke in a hideously bad mood. She was screaming and crying endlessly, and keeping up a long line of requests that immediately were cancelled out by new requests----"I want Angelina Ballerina!  I want Kipper!  I want Cat in the Hat Knows a Lot About That!  I want cheese!  I want salsa!  I want soup!"  Now, when we are awake and rational, we know that none of these requests are real, that she is just showing in the way she can that she wants something to make her feel better, and she doesn't know what that is.  But in the middle of the night, we are in a different state.  That is the part I think it's hardest for those who don't have full time care of a child with autism to understand.  Even those who work with kids like Janey, who are wonderful at understanding them and caring about them, don't quite get what it's like when you have slept almost not at all and you are trying to deal with your child and keep her happy and get some sleep.  You aren't thinking straight.  We kept trying to do what Janey wanted, hoping against hope she'd relax and sleep, and of course she didn't.

By about four in the morning, we had entered a state that is hard to even describe.  Tony had been off and on a little sick all week, and he was tired beyond belief.  I kept encouraging him to go into another room and sleep, but he could see I wasn't up to the sole parenting task, and he was probably right.  We both were just tired beyond words.  And Janey kept screaming.  We sat there together, Tony and I, and just were in despair.  We had that feeling that only comes during the night, the feeling that we just couldn't see how it would be possible to keep living this life, but knowing we had no choice.  You don't think, at times like that, that it's ever going to get better.  You don't even fully think the morning is ever going to arrive.

The morning did arrive, and by that time, by the time Janey got on the bus, she had somehow cheered up. Tony stayed home and caught up on sleep, and finally hopefully kicked off his illness. Janey got off the bus in quite a good mood.  The mood lasted all afternoon and evening, and she woke up this morning as chipper as could be.

We know the good mood could go away again at any time, but it is surprising to see it replace the bad mood at all as quickly as it did. Janey's moods usually last at least a week.  We are trying not to get too hopeful, because it's too hard to then lose that hope.  That was part of what was happening on the Very Bad Night---we had come off a few weeks of a happy Janey, and it was so incredibly tough seeing her at her worst again.

It's during those awful nights I most think of the rest of you living this life.  We are very alone, at those times, but I know we aren't totally alone.  All over the world, there are other parents awake, dealing as best as they can with their kids like Janey.  There are other parents living the life we live, the life that is at times incredibly, heartbreakingly tough, tough for the kids and tough for the parents. Next time you out there have a Very Bad Night, next time we have a Very Bad Night, we can send a thought to each other, a wish to make it to the morning, a reminder that nights, no matter how awful, do come to an end, and the morning starts a new day.

Thursday, March 3, 2016

Janey's post

What would Janey want to say in a blog post, if she could write one?  That has been on my mind lately.  I am a voice for Janey here, because she can't write, and she is what I've found is called low-verbal---she talks, but not much and not always with meaning.  I take being Janey's voice very seriously.  I would love her to be able to say what she thinks, to be able to share insights into her own life with her own voice with all of us.  But I can't make that happen just by wanting it.
The other day, using the idea of assuming competence, which is an idea I like very much but don't always find to be useful, I told Janey about this blog.  It's certainly been no secret, but I realized I hadn't sat down and explained it to her.  To be totally truthful, I don't think she understood what I was saying at all, but I don't know that for sure.  I told her I write on the computer about her, to tell people about what a cool kid she is and to help people understand autism.  When I say the word "autism" to Janey, I have realized I make it sound like I'm saying "Christmas morning" or "huge treat".  I want it to be a word she associates with all good things.  I then asked her if there was anything she wanted to tell people who read about her.  She didn't answer, as is usually the case.  I then did a starter phrase "I want to tell you that..." and she said "I love you!"  It's a very nice answer, but it's also echolalia.  I say all the time to her "I want to tell you that I love you!"  

After a lot more trying to get Janey to say something else, she did---she said "Are we done yet?"  That was actually a phrase that I haven't heard her use a lot, and I listened and stopped talking.

So---I have to guess.  What would Janey want to say?  I don't know.  Janey isn't self-reflective.  She hasn't ever said anything that indicates she understands past or future, or that she gets what autism is, or that she realizes she is not quite the same as a lot of other kids her age.  So I don't think that she'd make profound statements about why she does things she does.  

My best guess is based on what Janey asks for, what she seems to be driven by in life.  I think she'd want to talk about music.  She'd tell you what songs she likes, and what singers.  She'd want to talk about food, especially favorites like Chinese food or tuna or kale.  She'd tell you how she likes to cuddle on her bed, with her favorite special pillow.  She'd want you to know how much she loves car rides with Daddy.  She'd probably want to discuss her favorite TV shows, especially Angelina Ballerina.  I don't think she'd say much about school.  School and home are separate worlds for her, and she's never said one word to me about school.  She might say she's sad or angry, if she is.  She might tell you about Rebecca, my friend Maryellen's cat that for whatever reason seems to be often on her mind.  

I might be selling Janey short.  I've been amazed by videos I've seen of kids that learned to type and had many intense things to say.  But Janey doesn't seem to have a huge urge to communicate, and any attempts to get her to communicate in alternative ways are very quickly shut down by her.  She likes to use her voice, and the words she is comfortable with.  She understands probably 100 times more words than she says, and when she is using delayed echolalia, she shows she can physically talk easily with long words.  But she chooses not to, and I have to respect that.  It's like if someone said they needed to work hard with me to teach me to run marathons, when I've never shown the slightest interest in or inclination toward running.  I'd resist them at every turn.  I might be able to learn to run a bit better, but I'd hate learning and I wouldn't use what I learned.  Maybe it's not that extreme with Janey, but she does seem extremely resistant to my tries to widen her communication.

I'm putting some pictures of Janey on here, because in many ways, that is how she communicates best---by facial expression, by what she does.  I wish you all could meet her in person.  Until then, I'll keep letting you know her by writing about my very cool kid.

Tuesday, March 1, 2016

(Good) Time(s) in a Bottle

The last week with Janey has been wonderful.  She's been in truly a delightful mood.  We've gotten very good reports from school, she's laughing and happy at home, she did not have a tantrum ALL weekend last weekend, she is sleeping well and eating well and being as sweet as she can be.

I was thinking about the old Jim Croce song last night, and wishing I could save this time in a bottle.  Of course, we hope it lasts forever, but it won't.  I'm not being negative in saying that, I'm being realistic.  Janey's moods are extremely cyclical. A few weeks ago, we hit quite a low, and now, we are in a high.  And I don't think anything we do or not do has much impact on these mood cycles.

With Janey, everything works and nothing works.  When she is happy, everything works, all the ideas we have as to what keeps her happy.  She is happy with a routine, with lots of music, with plenty of car rides, with her favorite foods, with our willingness to change videos for her constantly, with being outdoors, with lots of attention.  When she is unhappy, none of those things help.  When she is happy, NOT following routines, or taking rides, or having a lot of music, can make her a bit upset, and we start to see the edges of unhappiness creep in, like arm biting or a worried face.  When she is unhappy, not following the routines is a disaster, but sometimes only to a small degree over the constant disaster-like unhappiness.  It makes me wonder how much we really affect her moods at all with what we do.

I don't know how common it is with autism to have such severe mood swings.  Much advice about autism seems to assume that behaviors have causes that are external.  This can be frustrating to me to read or hear about.  If you look at what works for Janey from a perspective of ABA type thinking, thinking that behaviors have reasons, you get very inconsistent results.  On days she's happy, you might think you've figured it all out.  I've fallen into that trap many times, even knowing what I know.  I think I've figured out a breakthrough, only to realize all I've done is helped a bit with a bump in the road in a day that is overall happy.  When I try to use the same approach on a bad day, it's completely useless, or helps only to turn Janey's behavior from "Should we go to the emergency room right now?" bad to "I think we might be able to make it through the night, just barely" bad.  It's like turning on a bright light in a sun-filled room, or taking away the light of one star on a starry night.  Neither of those things greatly change the already set general level of light.

So we are left with just riding out the storm, or in the case of the good times, enjoying the ride.  You can't put time in a bottle, but I wish we could.  I'd store the last week until eternity comes, and again I would spend it with Janey.