Mostly Sunny---a Janey report

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

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

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

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

Janey at school

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

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

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

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

Manic no sleep night

I hope you'll forgive me if any of this blog post doesn't make sense.  I'm operating on very little sleep.

Janey had one of her no-sleep nights last night.  These seem to be happening every month or two, but no matter how often they happen, they are impossible to get used to.

We're starting to be able to see the sleepless nights coming, though.  Yesterday afternoon and evening, Janey was very, very happy and excited.  I put a picture on the Facebook companion page to this blog, showing her huge smile as we left for a car ride. I'm including here three other pictures I took of her.  They all show the look, the look that foreshadows a very long night.   When bedtime came, and her usual bedtime is 7 to 7:30 (her choice, we wouldn't make her go to bed that early, but she gets up early and usually likes a lot of sleep), she was still hyped up.  She got on the bed, watching videos on her iPad as she usually does going to sleep.  But she didn't sleep.

Watching her on nights like last night, there are signs.  Every movement of her body is exaggerated and somehow stiff.  When she moves around, it's with big, wound up moves.  Her eyes get an excited look we don't see other times.  And she has an attention scan at these times of about 10 seconds.  She switches videos on YouTube at a pace that seems impossible.  As I listened last night, it almost seemed like she was using the videos as sound clips in some kind of rap song, switching back and forth and always stopping the audio of each clip at the exact same place to move to the next one, over and over and over.

The hours passed.  We took turns laying down with her, and then both did.  When we got up, she got up, running around the house and asking for things---rides, showers, walks, food, videos.  She'd go back to the bed when we asked, but would get back up in seconds.  If we stayed with her, she'd stay on the bed, but in the hyped state.

At times like this, she constantly re-arranges things around her.  One of the things she tries to re-arrange is my arms.  Somehow, she doesn't want to see my arms when she looks at me.  Her preference would be to have them behind my back, where they are out of sight.  Time after time, she moves them back to where she wants them. 

Around one in the morning, she got a foot cramp, and frantically said "Does your foot hurt?  Does your foot hurt?"  I could see her foot cramped up, and told her to stand up on it to help it.  She did, and jumped up and down for about 3 minutes straight.  I got her back into bed.  She started asking over and over "Angelina?"  Earlier in the night, I had typed Angelina into her YouTube Kids search area, and when some pre-populated choices came up, I had her pick "Angelina Ballerina"  She wanted to do that again.  I did it a few times, but a few times was never going to be enough.  I know I could have done that hundreds of times and she'd have still wanted more, as part of a routine that would include the quick switching of vidoes in-between.

At two, I was no longer able to keep my eyes open, and Tony took over.  She didn't sleep, of course.  She got on the bus happily at 6:30.  She is at school now.

These nights are awful, and we have no idea what causes them.  It's possible she got her hands on some chocolate at school, it being the Easter season.  But it could just be one of her periodic manic times.

We give her melatonin, most every night.  It works well, except when it doesn't work at all.  When she got the foot cramp, we gave her some Motrin, in case she was in pain she couldn't tell us about.  I don't know if it had any effect.  I am pretty sure nothing we could do or say or give her would make a bit of difference on manic nights.  Her own internal demons or angels or hormones or whatever are far stronger than anything external, at times like these.

During the day, when we've slept, we, and I mean the larger "we" of other families living this life, can be the kind of parents that match up with the books, blogs, advice, standards, of autism parenting.  At night, when we would do almost anything to just be able to sleep, we can't.  And that is where I don't think anyone who hasn't spent a night like our last night can really, truly, deeply get this life.  It's the initiation into our club.  It's the shared tribal ceremony.  It's the bonding experience that by its very nature gets experienced away from the others it's bonding us with.  I try to keep in mind, during those endless nights, the rest of you out there.

Please, Janey, sleep tonight.

The last day of summer

School starts tomorrow, and I must say it's not a moment too soon.  I don't like summer.  I never have, and I don't think I ever will.  These last few weeks of summer with Janey have felt brutal.

I of course feel right away I must modify that.  There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry.  But in terms of sheer endlessness, these few weeks have few equals.

I have been taking the advice of a lot of my friends I've met here, and I thank them for it.  I've been trying to be easier on myself in terms of what gets us through the day.  TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that.  TV equals bad parenting, in my mind.  But in some ways, that is a selfish view, because for Janey, TV equals happiness, often.  She adores her shows.  Her default position in the house is in front of the TV, standing up and dancing and jumping.  She has strong opinions about shows, and even episodes of shows.  It's not random watching.  She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming.  I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart.  She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets).  She interacts with the shows, more than with people.  So---I am trying to relax and accept that.  But I'll admit it.  I feel like a bad mother when the day is mostly TV, often.

I think what most frustrates me is how hard it is to go anyplace outside the house with Janey.  It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits.  I want to get out of the house, but with Janey, it's so hard.  It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own.  It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene.  Taking Janey places is a two or more person job.  If there is backup, it can be great.  I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen.  If there's two people around or more, we've had some very successful outings.  But these weeks, it's been just me, and that's tough.  Again, I'll admit that makes me feel guilty.  I have an overactive inner voice, one that says "You are just lazy.  You aren't trying hard enough.  You just want to stay home and sit around"  I think it's time I told that inner voice to shut up and look at the facts.

We do one trip every day---the short walk to the "ice cream store", the convenience store near us.  I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me.  She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.

So, when I think about it, these weeks have probably been harder on me than Janey.  I think Janey is okay.  It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over.  That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege.  I talked to Janey's teacher for the year yesterday.  It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher.  I am looking forward to Janey's 6th grade.  I think she is too, as much as she looks forward to things.  So I say goodbye to the summer of '16.  I won't say good riddance, but I will say I'm ready for that goodbye.

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.

One Afternoon

Janey gets off the bus with manic excitement, something I've learned over the years to be a little wary of.  She runs into the house, dropping her coat and hat and backpack as she goes, and dashes to the refrigerator, pulling out cheese and pesta and ketchup, and yells "Cheese, please, cheese!  Want to pour ketchup!  Pesto, please!"  I fix her multi-course snack, and she eats.  Then she asks for Angelina Ballerina.  I hold my breath as I put it on, and sure enough, after about two minutes, she starts screaming.  She stomps her feet and bites her arm.  As I walk over, she lunges toward me, teeth first, not exactly biting but hitting my chest with her teeth.  I pull away and say as calmly as I can "The TV is making you upset.  I am going to turn it off"  She flings herself onto her bed, screaming loudly.

I stop, take a breath, try to not fall into a useless despair.  I remind myself she hasn't had a mood this bad in a long time, probably a few months.  I tell myself to be patient, to stay calm.  I get on the bed with her and say "You seem very, very angry"  She screams more.  I pick up a few of her stuffed toys, which she never touches, and make them say "I am so angry at you, Mama, for turning off the TV!  I'm VERY ANGRY!"  Olivia Doll says it, Angelina Doll, Kitty Doll.  Janey watches for a bit and then repeats "I'm very angry!"  I rush to praise her.."Great talking!  You told me how you are feeling!"  She grabs my hand and bends my fingers backwards, while kicking me.

I get off the bed and say "I can't be on the bed with you if you are hurting me"  I walk away, keeping her within sight.  She screams and flails around.  Then she screams out "Want to watch Hercules!"  I say "I can't put on the TV until you are calmed down"  She screams louder.  I say "Would you like to take a shower?"  At this point, I'm counting the seconds until Tony gets home, and thinking how a shower would kill some time.  She screams back "WANT TO TAKE A SHOWER!" and so we do.  I don't get in with her, not feeling like being bitten or hit.  I sit in the bathroom and hope she wants a long shower.  She fiddles with the taps and makes the water too cold.  I fix it, and remind her not to touch the taps.  She does it again.  I tell her next time she'll have to get out.  She makes it hot and yells "FIX WATER!"  I get her out.  She is furious.

We go in the living room.  She says "want to watch SpongeBob?"  I ask her if she can calm down.  She responds by taking a deep breath.  I put on SpongeBob, unsure as so often if I'm doing the right thing.  She watches for a few minutes, and then punches the TV and screams.  I walk toward her and she lunges to bite me.  I block her.  I am out of ideas, out of patience.  She goes back on her bed, screaming.  She asks for the iPad.  I give it to her, and sit out of biting range.  There are ten minutes until Tony gets home.  She plays with the iPad for about 5, and then asks for cheese again.  I cut some for her.  Two minutes until Tony.  She asks for the TV.  I say no.  She screams and tries to put it on herself.  I hear Tony coming in.  I tell her Daddy is home.  He walks in the door and asks how things are.  I say "hellish"  I tell him I'm going to the store for a minute, and I leave, shaken and tired.

To the others out there living this life---how are we going to make it?  How are we going to get through the rest of our life that's like this? How can we help the kids we love so very much?  How can we keep them safe while keeping ourselves safe?  What are we going to do?

Responding to delayed echolalia

Most of what Janey says is delayed echolalia. She talks mainly in quotes, from videos, songs, from stories or poems she's heard, and less frequency, from actual speech of parents, siblings, teachers, etc.  It's always been very tough for me to figure out how to respond to her delayed echolalia.  I've read all I can on this, and asked a lot of people with knowledge of autism, and have gotten a variety of answers.  Some sources say to ignore the DE, which just feels wrong to me.  Others say to respond to what it seems like Janey is TRYING to say, for example, if she quotes part of a video about eating, to offer her food or ask if she is hungry.  I've also read I should point out that she is quoting, and try hard to get her to say something original.  None of those idea feel totally right to me, and of course, it's probably a case where NOTHING is totally right to do. 

Lately, I've been trying something new.  If I can identify the source of the delayed echolalia at all, and I can remember what comes next, I respond back with that.  For example, Janey quoted a part of an Angelina Ballerina video to me today about telling a lie, from when Angelina tells people her mother is having a baby when she isn't.  I remembered the quote, and said back "I have to admit, when you tell a lie, it's a whopper.  And a little embarrassing", which is what Angelina's parents say to her after her lie is figured out.  The look on Janey's face was enough to make me think I was on the right track.  Janey looked thrilled, like I was really getting her.  I had let her know I knew what she was thinking about, and I added to it.  Janey then said the next line, which I hadn't remembered, and looked at me eagerly, but I didn't have any more memorized.

I think what happened here is that I gave Janey an idea what a conversation feels like.  She said something, I responded with something that related to what she said and added to it.  She looked so happy, like I had figured out what she'd been looking for.  At this point, Janey's speech is not at a point where real conversations can happen often.  But that doesn't probably mean she wouldn't like the good feeling of having a conversation, and maybe somehow the delayed echolalia is partly an attempt to have one.  This also might be why she loves nursery rhymes or predictable fairy tales so much.  They let her start her version of back and forth conversations.

Of course, I wouldn't be me if I didn't have a lot of doubts about whether this kind of response is a good idea.  Am I just encouraging rote reciting?  Am I losing out on an opportunity to work on REAL speech?  What I've told myself back is that it's been many years now, and Janey doesn't seem to be making a lot of progress toward real speech.  At this point, I think the most crucial thing is to let her connect via talking, to keep her interesting in someday talking more usefully.  If I'm always answering her in a way that doesn't let her feel satisfied and happy, I don't think I'm encouraging her to talk.  As often, Janey is showing me what she needs, I think.  When I respond to her quoted speech with the next part of the quote, she gets a look in her eyes I don't often see, a happy, connected look.  She looks right at me, and looks eager to go on with the back and forth quoting.  I think I'm going to go with this approach for a while, and I might spend more time with Mother Goose type reading, to give her more lines to say back and forth that I am familiar with.  As almost always, I'm making it up as I go along.  It's the best I can do with the unique kid I've been given.

Hodge Podge Lodge

The title is a TV show that was on when I was very young, in which a woman who to me looked like a witch had kids over to her hut in the woods and showed them nature things, like cocoons.  But that doesn't really have to do with this post, although I always wonder if anyone but me remembers the show, or if I just dreamt it.  I meant the hodge podge part, a few little notes about this and that to do with Janey.

HP1----  Janey has gotten into Snow White and the Seven Dwarfs.  I've never really watched it before now, and it's a beautifully done movie.  It certainly has scary parts, like The Little Mermaid, but somehow they seem less terrifying, and I'm glad she made the change.  Today she brought it over to me, and wanted to watch it, but couldn't think of the name.  She spoke in that special tone she uses when she is having to think very hard about what she is saying, and said "I want Beauty and the Beast"  Which is very strange, as she's never seen that movie, only clips from it on singalongs.  But it's another Disney movie, and I wonder how the two got connected in her mind.

HP2 ----  This morning, when walking from our parking spot to school, Janey pulled me into a grassy lot near her school, because there were piles of fallen leaves there.  She wanted to kick them as we walked.  I loved that.  It's a universally fun thing to do, and one of those moments where the autism makes no difference.

HP3  ---  A few days ago, Janey was in silent mode.  That's an unusual mode for her, I mean a really silent mode.  She is usually noisy---either laughing, crying, echolalia talking, singing, pretty loud for a mostly non-verbal gal.  But those days she was just silent.  When she did talk to ask for something, she whispered it to me in a barely audible voice.  I really didn't like the silent days.  It threw me into a bit of a depression.  I'm not sure why.  Our family is fairly loud.  Not me on my own, but I've become loud in defense.  We shout from room to room, have animated "discussions" often, sing to ourselves---there are not a lot of quiet moments around here.  And I guess Janey usually fits right in with that.  Having her be so quiet scared me somehow.  She seemed very lost.

HP4  ----  I wonder how often Janey pretends not to know something to get out of doing things.  I used to not think this at all.  But today for some reason, I was showing her an app with aliens, where you had to match the color of the aliens to a space ship that showed up to take them away.  She wasn't a bit interested. She just kept asking for Angelina Ballerina.  But for some reason, I wanted her to try it.  So I said "First match the blue alien to the spaceship, and then I'll put it on" And she did it in a second, with a look on her face I am very familiar with from the boys---the look of "O---KAY!  I'll do it to shut you up"  She had no problem at all with it.  I was surprised, although I know she can do color matching, but the ease and the look were something else again.

HP5  ---  Not that I ever plan on getting a nanny, but reading about the horrible situation in NYC where a nanny killed two of the children she was charged with caring for, all I could think about was why it's so important to me to have Janey be in my care, my husband's care or her school's care, or that of very trusted family and friends.  Not that everyone doesn't feel that way.  But caring for Janey can be incredibly frustrating.  You have to love her to care for her well.  I couldn't hire someone to do that.  And at school, there are many hands to help.  Everyone who cares for Janey there loves her, but if they get overwhelmed, there is someone else there to take her for a bit.  It's another thing that makes autism parenting tough---I know Janey could try the patience of saints sometimes, and that I need to always make sure she is with someone I can completely, totally, wholeheartedly trust.

HP6  ---  I just did what I am always telling Tony not to do---let Janey have a little chocolate after noontime.  No sleep tonight!

New thoughts about crying

The book I read yesterday sent me off on a bit of a thinkfest, which is a good reason to read books you don't totally agree with, or books that give you a new perspective on old problems.  The author was talking about a statistic on how many people with autism are non-verbal, and giving a reaction to that from some autistic bloggers who don't talk verbally.  They said the definition of what is "verbal" is too narrow, and that even if people don't talk, they are verbal if they communicate in other ways, the way that sign language is certainly a form of being verbal.  They mentioned sounds, body movements, typing, drawing and the one that got me thinking, crying.

I realized I don't see Janey's crying as communication by itself.  My typical reaction to her crying is to say "What's wrong?  Tell me why you are crying"  I often add "tell me in WORDS"  I have never really seen the crying as talking in itself.  But I guess it could be seen as thus.  It's saying "I am sad" or "I am angry" or "I am overwhelmed" or even just "I don't know how to react here".  Of course, I think after a while the crying feeds on itself, and the 2nd or 3rd or 10th hour of crying is not quite the communication that the first bit of crying is, although I suppose some might argue with that.  But that first bout of crying---what if I treated that as a spoken utterance, and reacted to it like that?

I tried it this morning.  Janey has gotten into watching "Angelina Ballerina" again, but a different version of it, one that has 3-D looking graphics instead of cartoon ones, and in which Angelina seems a little older.  She's watched two sets of these on Netflix, but prefers one of them.  As I often do when she asks for a show, I put on the less preferred on, just to try to stretch her horizons a little (if she specifically asks for a certain episode, I put that one, but if she just asks in general, I don't)  She watched until it got past the intro part that was the same, and then started to crying hysterically.  I was about to say my typical "What's wrong, sweetie?  Tell me what's wrong!"  but then stopped and thought "I know perfectly well what's wrong.  Why not accept her crying as that?" and said instead "You are very sad I put on the Angelina Ballerina you didn't want.  You are so sad you are crying!  Let's fix that right away!"  Janey gave me a look that stopped me cold, a look like "wow.  I can't believe it!"  She stopped crying, and started watching the new show.  I then said "if you don't like this show either, you can tell me.  Or you can cry to tell me"  She looked stunned, truly stunned.

I didn't make the connection until just now, but this morning, walking to her school from where we parked, twice Janey stopped and looked up at me, right in my eyes, and smiled a huge smile.  When we got to her classroom, instead of turning away and acting like she had forgotten already I exist, as she usually does, she stopped, held me hand and said "I want to take a little walk".  And so I took her for a little walk around the school before taking her back in the room.  This behavior might be unconnected, but it was very unusual behavior for Janey.  Maybe I did hit on something.

Of course, as I've said here over and over, I don't always have any idea what has caused the crying.  But I could just say "You are sad!  You are telling me you are sad!" and comfort her, without having to know.  Or I could guess, and hopefully hit it right.  But I think it's my attitude that I will try to change most.  Crying is communicating---a very basic thought that I hadn't really grasped until now.

Article I liked

I just read this article

http://childrenshospitalblog.org/our-patients-stories-recognizing-miracles-in-everyday-life/#more-13865

and really liked it. It said well something I've thought about a lot lately. I would really like to know exactly what is going on with Janey. Does she have more than autism? Why is it so hard for her to learn, even in ways other autistic kids seem to be able to learn? And I don't to know this to look for a miracle cure---I want to learn it to be able to plan, and understand. I want to know what to look for in the future, what kind of education would be best for her, what kind of care she will need for the rest of her life. Someone telling me that would like a wonderful thing, not a miracle, but a wonderful thing.

It's been interesting watching Janey this summer in "summertime school", as we call it. And a little sad, but not all sad. For the first time, she is in a class with all kids with special needs. I don't know what all of their special needs are, but it's obviously she is behind all of them. They are connected, they do puzzles and draw pictures and even write. They know me, and screaming "There is Jane's mother!" Whereas Jane, although she is happy and well cared for and loved there, isn't learning, because she just doesn't learn well. If not totally directed, she stands around, lately spending a great deal of time looking at her hands. At home, most all of her speech now is quotes from "Angelina Ballerina". She often seems less connected than she used to be even. She just sits quietly. She is happy most of the time, but an unconnected happy.

If this is how she is, and this is how she is going to be, so be it. I can accept it. I really can. I've been looking at older kids at the summer school, and I see it's not a bad life. They seem happy. They are not aware of their limitations. They do their own thing, and seem to enjoy their own thing. It's okay. But what if there is something I should be doing---if I am not doing the right thing? I haven't felt that way for a while. Maybe it's because it's almost her birthday. Every year, her birthday gets a little more bittersweet. She is going to 7. Mentally, she's around 2. Maybe less in some areas, more in perhaps words she knows but doesn't use. She's not toilet trained, she talks very little except to ask for things in a basic way or quote videos. She more and more often makes odd noises when we are out, a kind of "awawawaw" noise that sets her apart. She still sometimes runs from me. The years are going by, and not much is changing. And I have probably, in some ways, reached the acceptance stage. She is who she is. If I were sure that was it, I'd be fine. But I'm not sure. What if I had always insisted on many hours a week of ABA, although I've never seen it do much for her? What if I worked with her myself all day every day, intensely? What if I believed Jenny McCarthy, and did what she said? (not going to happen) What if it's somehow my fault, for not doing enough? Or doing too much, or not doing what I was doing right? A million people could tell me it's not my fault, but I don't believe it, in the deepest part of myself.