"Want to take a shower?" times infinity

Janey slept very little last night. Instead, she spend the night waking up Tony and me over and over and over and over, each time asking, in the exact same tone of voice, "Want to take a shower?"

 After all these years, we still have no idea how to best respond to repeated questions like this. You would think we'd have figured out a strategy that works. The fact we haven't makes me think there isn't one. 

 The rules about a shower are something we stay pretty consistent with. During the day, Janey can take a shower pretty much any time there is time. She sometimes takes 10 a day. The water bill is high, but there aren't that many things Janey loves to do, and we are happy to make her happy. However, during the night, we have a rule that showers have to wait until 5 am. We don't want to be turning off the shower (she can turn it on herself) and drying her off and helping her get re-dressed over and over, and we also of course want to encourage sleep over constant showering. So it's not that she thinks that we might give in and let her take a shower during the night. We just don't.

 So...how do we respond to the endless requests? At first, we just say something like "No, it's not 5 o'clock yet. No showers during the night". This makes little to no impression on Janey. She will ask again, after a minute or two, forever. After a while, when we have been driven to that point, we usually say something like "We'll answer you two more times. After that, we aren't going to answer you if you ask for a shower". We try that for a while. Again, it makes no difference, except sometimes then Janey starts crying from our lack of answering, and we feel guilty. We try other things. Distraction? We try. It's hard, during the night, when we are exhausted, but we try talking with her about something else, snuggling with her to try to get her to sleep, letting her watch videos, things like that. It doesn't work. She will keep asking, in the tone that sounds like a recording, all night.

 At some point, because unfortunately we are human, we might answer in a tone that allows in a little anger..."NO! No shower! We've told you that a hundred times! NO SHOWER!" That does no more good than anything else, except for making Janey cry almost for sure.

 We've tried other exotic things over the years---a recorded answer we play on our phone, a social story about showers being only for the daytime, a written answer on paper we show her. Nope. No dice. No difference.

 You might be thinking now---what if they just gave in and let her take the shower? Well, during the day, we do that sometimes, and once or twice, on long, long nights, we've tried that too. She's be happy for the length of the shower and maybe 5 minutes afterward. Then...you guessed it...again, "Want to take a shower?" The problem is, I think, that Janey has a hard time thinking of things she wants to do. She truly doesn't want to do that many things. She wants car rides, showers, taking the bus to school, eating and videos. During the night, she does sometimes ask for car rides, but she does seem to get that when it's dark, that's not going to happen. We try to keep middle of the night eating at a minimum, but we sometimes do leave food for her to eat around. She can always watch videos. The bus to school---she does ask for that, but she seems to get pretty much that's only once a day. But showers...I think she knows that she COULD take a shower, even if we aren't allowing it, and when she is awake and restless and bored, a shower seems like a good idea. And her understanding of time and her lack of understanding our annoyance, keep her asking over and over.

 I have no idea how to deal with this issue. And I am very aware that many people like Janey don't talk at all, and that even a repeated question would be something their loved ones would love to hear, and I try to keep that in mind. And I am glad Janey is expressing what she wants. But at 3 am, after being kept up all night, when the question gets asked again---well, that's tough.

 This sort of thing is why I worry about the thought of Janey ever being cared for at a group home or the like. We love Janey extremely much. How would someone react that, although they might care very much for Janey, they might be a professional with a huge amount of patience, how would that person that isn't her parent react to a repeated question that even for us, making us half deranged? The scares me.

This kind of issue, the kind of problem that seems without a solution, is one of the hardest parts of being Janey's parents.  There isn't a guidebook for this kind of things.  Janey's mind, her understanding of the world, her wants and needs, are just not typical, not the mainstream.  Solutions that would work for those with less severe autism, like rewards or reasoning or even punishments or tokens or social stories or so on...not something that Janey gets or is helped by.  

So...today we are tired.  We are frustrated.  We are glad it's daytime, for now, and we can give in and let Janey take a lot of showers and car rides.  We look forward to school tomorrow.  We go on, loving our Janey, managing as best we can.

The Things Janey Cannot Change---a plea for serenity

 Last night, while Janey was lingering in the shower after I washed her hair, she said "Want to get out?" I knew what this meant, and it wasn't that she wanted to get out.  She wanted me to adjust the water, to make it hotter or colder.  

I started to reflect then, and kept reflecting all night and into today, on how little influence time and examples and corrections seem to have on Janey.  For years and years and years now, whenever she has said "Want to get out?" while in the shower, I've tried to get her to say what she really means. I've said "Do you really want to get out, or do you want me to fix the water?"  I've tried taking her at her word, and reaching in to help her get out.  I've tried getting her to repeat "I want you to fix the water" before I will do it.  I've tried everything I can think of.  And still, Janey asks to get out when that's not what she means.

I can think of so many other examples like this.  One that keeps coming to mind started at age four, when she first starting with ABA.  The therapist had a Slinky Janey liked, and Janey would ask for it saying "Yoyo?"  I think she started calling it that because she liked to have it bounce up and down, like a yoyo.  The therapist seemed to feel it was important to have Janey ask for it correctly, and would never give it to her unless she said Slinky.  And Janey never would say "slinky" unless she was prompted to, no matter how much she liked the Slinky.  Last month, I showed Janey a slinky from some box of sensory toys I'd gotten.  Janey grabbed it, saying, of course, "Yoyo!"  I don't remember Janey playing with a Slinky in all the 13 years since she was four, and if she did, I'm sure no-one called it a yoyo.  But that's her name for it, and it didn't change.

When Janey wants us to put a show on for her, and we ask which one she wants, she says "This one!"  Although we are driven crazy by this, and we are super motivated to get her to be more specific, although we have tried every single idea we could possibly think up to get her to stop the whole "This one!" bit, it doesn't work.  She still says it, every time.

The same unchanging Janey shows up in ways besides talking.  She is drawn to beds when she has a full bladder, with predictable results.  Believe me, she knows that's not a behavior we like.  Believe me, we have tried extremely hard to stop her from that behavior.  But it continues, year after year after year.  Janey likes to rock in the car to music.  Doing this rubs her neck against the seat belt, and cuts into her neck at times.  I'm sure this hurts, but even that doesn't change her rocking.  Janey stuffs her mouth full of foods she likes, especially salami.  We have tried so hard to stop this---giving her only little pieces at a time, staying near her and constantly reminding her to chew and swallow before taking more, cutting off her salami supply---all to no avail.  

It's hard to understand why Janey persists with behaviors and speech and routines that just don't work well, or actively can hurt her, or that provoke non-positive reactions.  I have to assume it's very, very, very hard for her to change a behavior or label or phrase once it's established.  This worries me.  We are used to her.  We get frustrated, but we love her and accept her, even sometimes through gritted teeth.  But the wider world?  The world without us with her?  I can see how she could seem willful, stubborn, provoking.  I can see how it would be hard for others to understand the depth of her mental barriers to change.

By this point, we've accepted that Janey simply can't change in some ways.  It's not like she doesn't learn when she can.  Anyone who has seen her hands flying using her iPhone or navigating or a web browser, or singing obscure verses of Christmas carols knows she can learn some things extremely well.  And I'm sure she would want to be able to effectively communicate with us; I'm sure she doesn't like hurting her neck or choking on too much food; I'm sure she's tired of our angry reactions to wet beds.  And I know we are motivated to do whatever we can possibly do to try to help her learn the stuck-in-wrong words or behaviors.  We, and she, just can't do it.

What is my message here?  I guess it's to plead for the world's understanding for Janey and all the others like Janey.  They are doing their best.  Those of us working with them are doing their bests.  But as the Serenity Prayers says, even to a non-religious heart like mine, let's all work on serenity to accept the things we can't change.

Here's a picture taken today of my bewildering, beloved Janey.

"Frustrated, Angry, Bored"

Janey has had a tough week.  After almost two months handling the quarentine like a champ, I think she's had enough.  She's been screaming and acting out much of the day, every day, staying up most of the night and sleeping during the days, tossing things around---just not happy.  Last night she had been yelling for hours. Out of desperation, I turned to her iPad's talking programs.  Using the one program she seems to like, Proloquo2Go, I went to the feelings page and asked her to please tell me what she was feeling.  Without hesitation, she picked "hate".  And pushed it over and over and over.  Fair enough.  Then I went to the body parts page to ask her if anything hurt.  She picked "feet", which is something she often picks.  I asked her if she needed a foot rub and she said yes, so we did that, and then she went to the program and picked "legs" and "arms", so I gave her a leg and arm rub too.  Then she exited the program and told me to go away.  The rest of the night was far better---she slept well and didn't scream at all.

So...why don't we use the "talker", as we call it, more?  Because Janey won't.  We've tried and tried.  I've read whatever I could on using it.  I've tried modeling, tried having it open near her as much as we can, tried programming words she might want into it, tried all I can think of.  Most of the time, she strongly rejects it.  She's several times used her limited speech to say "I CAN TALK" when I try to get her to use it, when I've said how it can help her talk.  I don't know why she doesn't like it more.  But I have respected her wishes, partly because trying to force her to do anything is a losing game.  So for quite a while, we haven't even tried it much.

I realized last night that part of why I don't try it more is that I was a little obsessed with using it "right".  I wanted to have her learn to use it for sentences, to move between screens, to try new words with it.  But the times it worked best was when I first went to a screen with a theme, like I did last night, feelings or body parts, or foods or colors or things like that.  She readily chooses when I do that.  I think she can read the words some, and uses them more than the pictures, but I have no way to prove that.  But I am going to try to more often just open a screen for her and let her pick.

This morning, I pulled up the feelings screen again.  Instantly, Janey picked "Frustrated, Angry, Bored" in rapid succession.  Well, that about says it all about life being stuck at home.  I told her I felt the same way, and I wish there was more we could do to help.  The biggest problem right now is masks.  Janey will not wear a mask, and it's the law here in Massachusetts that masks must be worn in public.  There is an exception for people with special needs, and I know we could use that, but the other part of it is that we believe in the masks, and are very scared of getting sick.  Aside from the disaster that Janey getting COVID-19 would be, if she gave it to Tony or me, we could get very, very sick.  So, while the virus is still badly raging in this area, we are stuck.  We can go for car rides to nowhere or play in the driveway, but that's about it.  And who wouldn't be frustrated, angry and bored----especially if you were 15?

This whole virus life is hard on everyone, but especially hard on kids like Janey.  She doesn't have friends to text or FaceTime with.  She doesn't read books.  She can't take walks even right now...if she would wear a mask, there's still the problem of her touching everything in sight.  She is stuck in an endless dull day.  And we are trying, but it's hard to break up the boredom.  I'm surprised it took her as long as it did to get angry.

October is the cruelest month

A few years ago, when Janey wound up at in a psychiatric hospital, quite a few people told us that October is the month many crises such as the one she was in then start.  They think it's a combination of things---the newness of the school year wearing off and reality hitting, the lessening light, the change in the weather, the lack of big holidays---but whatever it is, a month you would not expect is the month that's hardest for kids prone to being upset.

This October has been tough so far here.  This weekend and the past weekend have been pretty rough for Janey.  She isn't happy.  It's remarkable how long it's been since she's been unhappy like this.  We had a good long run of happy times---of course interrupted now and then by sad days, but it's been a long time since we had a weekend like this and last one.

This weekend, Janey has been screaming a great deal.  We can control the screaming a bit with the old reliable things---a car ride or food---but the car rides get cut short with more screaming and the food would have to be more constant than is healthy or possible to keep back the sadness and anger she seems to feel.

The most frustrating part, for us and I am very sure for her, is how hard it is for her to communicate just what is upsetting her.  Is it physical pain?  Did something upset her when she wasn't with us?  Is she worried about something?  Is she bored?  Is she annoyed with us?  Does she miss her brothers?

We are left, so often, playing a guessing game with her as to what is wrong.  When she is screaming or crying, her already very limited speech becomes even more so.  When we try to guess, often she falls back on her default response---"YES!"  So we say "Do you want a different TV show?" and she screams "YES" when that isn't what she means at all, and we change the show, and she gets even more upset.  I feel awful for her when this happens.  I'm sure it feels like a nightmare for her, being so upset and so unable to explain why she's so upset.

We planned a trip to Maine to see my parents this weekend, especially to see my father, who is home after his awful fall and hospital and rehab stay.  But it's not possible to drive when Janey is screaming.  It's not safe, for her or for us.  And she just cannot be cared for by one person alone when she is in screaming crisis mode.  We tag team.  She's been up now for a long time, and Tony is getting a little hugely deserved sleep while I write this at five in the morning, stopping often to try to calm Janey's outbursts.  I feel, quite honestly, trapped and overwhelmed.

I do believe this will pass.  We've seen times like this before, and they don't last forever.  But while they do last, I want more than anything to find a way to help Janey explain what is wrong.  She is thirteen.  I am sure sometimes what is wrong is that she's bored of us, she's feeling a teenager's angst and annoyance at the world, she is frustrated with her life.  But how do you deal with that kind of feeling when communication is tough?  And I don't want to assume, to say to myself "Oh, she's a teenager" if there is something else wrong.  How do I know?

When the general public thinks of autism, I don't think they think of this.  This isn't the quirky savant, or the toddler full of unlockable, fascinating potential.  This is an amazing, beautiful, complex teenager who is not able to communicate, a person who is not a statistic, or a symbol, or a problem, or a project.  This is my Janey, and I wish so much I could help her be happier.

Treading Water

This week, and last week and I project this next week, feel like treading water, like running in place.  Janey and I are getting by, but not going forward, not doing much of anything useful or even that fun.  I feel like I'm somehow just not figuring something out, like I'm wasting time that shouldn't be wasted, but I'm not able to do what it takes to change things.

School starts a week from today.  I must say every year the first day of school feels like a holiday right up there with the big ones. I always liked the first day of school, no matter how I felt about the rest of the year.  It felt like the start of it all, the beginning of something new and big.  I remember how it felt to have my new 5 subject notebooks, each section carefully labeled, to have a clean desk and locker, to see who was in my classes and what new faces there were.  Within a few weeks, always, my desk or locker was a horrible mess, no matter how hard I tried, and the notebook was doodled on and torn up.  But the first day---it felt wide open.

Janey and Goofy, at ToysRUs

Janey will be starting 6th grade.  In a lot of ways, every school year feels the same with Janey.  But 6th grade---that's a big one.  That's middle school.  I have a memory so vivid it's like a movie clip of the first moment of 6th grade.  We moved to what in our town was called The Annex.  It was a school built in 1900, and by the time I went there, in 1976, it had been condemned for at least 10 years.  No-one could go on the 3rd floor at all, and only teachers could use the 2nd floor.  We were on the first floor, 3 classrooms.  There were 3 other classrooms you had to go down a hill outside to get to, a shop and a home ec room and a room called "the community room" which was a standalone classroom.  It was a small town, obviously.  But that moment I walked into The Annex for the first time felt like a huge deal.  Mr. Berry was there, one of the six teachers, and he was pointing and saying "That room for 6th grade, that room for 7th, that for 8th!" and it felt like the start of something getting close to adulthood.

I write about that moment partly to contrast it with Janey's life.  6th grade will be a lot like any other grade for her.  The years don't change much, in terms of what she is working on learning.  She'll go to school until she's 22, and then, probably I would guess to some day program.

Janey at the park, before loose dogs scared her away

I feel more and more like it's up to me to make Janey's life interesting and meaningful, and I feel like I'm not doing a good job.   And as much as I tend to take all blame on myself, I know in this case my job is very, very tough.  If Janey were a typical 12 year old, there would be literally thousands of programs, lessons, camps, enrichments---all open to her and all within the Boston area.  In addition, she would have friends.  She would perhaps be riding the subway to school on her own, if she were going to a school like Freddy did.  I would be part of her life, but it would not all be up to me.  When I think about it much, I can get furious.  Giving Janey a meaningful life is as important as it is to any child, but where in heck does all the money donated to autism organizations go?  Why is there basically NO programs Janey can access?  There are a few programs for autism here and there, but when I look into them, they are for the highest end of the spectrum---not for a child like Janey.

Janey finding the Elmo crayon toy, one she loves so much we've bought it twice

So---I do what I can.  It's not enough.  This week, we did a lot of walks to the corner store.  We went to a big open park, Millennium Park, early in the day so there weren't too many free roaming dogs or little kids.  We left when more dogs arrived.  We went to ToysRUs, and Janey enjoyed looking at toys (it's one of the few stores where touching the merchandise is not a problem) but then she got upset and started toward a little girl with a look I know as "about to lunge" and I grabbed her and left.  We watched TV and took showers.  It was not a week that was interesting and meaningful.

I will stop for now, as I feel like I'm entering the ranting and rambling stage of writing.  I'll stop and try to think of something to do today, try to figure out something that is safe for Janey and those around her, something interesting and meaningful.  Good luck to me.

On loving the real Janey, not the potential or perfect Janey

For a week or so now, I've been feeling frustrated and upset by a lot of what I see out there in the world of the internet about autism.  I haven't been able to quite put my finger on what has been bothering me until now.

This article somehow cleared my mental clutter a bit and allowed me to put voice (internally and hopefully now to you!) to what I've been troubled by.  It's been a combination of themes that have upset me.  These themes, on their own, are well-meant and progressive, but they combined to send a message about severe autism, low-functioning autism, non-or-low verbal autism, whatever you want to call it (and having to be careful what you call it is another issue).  The message they send is "People with severe autism are not valuable or worth helping just the way they are"

One thing that is said a lot about Janey's type of autism is "Assume competence".  There's a lot I like about that idea, but I realize now there's also a lot about it that can lead to the message above being sent.  Janey isn't a valuable person because of something we have to assume, something that might or might not exist in her.  She's not valuable because she might understand more than she lets on, she might be reading without me knowing it, she might be a musical genius in disguise, she might have a higher IQ than she can show by testing.  She's valuable EXACTLY HOW SHE IS AND APPEARS.  She is valuable even if she never, ever progresses beyond where she is right now.  She's valuable without having to assume anything.

Another trend I see here and there lately is that of never saying anything that isn't positive about parenting autistic kids.  There's sometimes an implication included that if you don't speak only of the wonder and joy of raising your child with autism, you are lacking as a parent, you don't love them, or, at the very least, you are leaving a trail that they might someday read and feel upset about.  Well, I'm here to say that anyone who never has found anything negative about parenting ANY child is at the very least kind of clueless, and at the very most kind of, well, lying.  I love all three of my kids with an intensity that almost scares me.  But there were moments in parenting all three of them that were horrible.  There were scary moments, frustrating moments, moments I felt angry, moments I felt in despair.  In setting aside kids with autism as somehow being different than that, somehow being incapable of provoking any feelings but pride and wonder and joy---that seems to me to be again saying they are only valuable as some kind of fairy tale innocent, some kind of otherworldly being.  Janey is valuable for who she is, exactly how she really is.  I don't have to be careful with every word not to break a bubble of illusion around her, because I love the real Janey.

In so many areas, the thoughts and beliefs of a culture change like a slow-swinging pendulum.  In the past, a child like Janey would be seen as a tragedy, someone to "put away" as to not ruin the lives of the parents and siblings.  I am so thankful that is not the thinking now.  But we have swung to the other end of the line, where Janey and children like her are full of amazing potential and a glowing beacon of perfection in a fallen world.  That leaves parents like us, parents terrified about the future, living a life that is hugely full of stress, getting by from day to day, left feeling like we are somehow at fault, somehow seen as not accepting or loving our children enough.  In my eyes, being honest about children like Janey, the good, the bad, the wonderful, the terrifyingly tough---to me anyway, that is love.  That is love of a real child, not a symbol or a potential or a myth.  I love Janey.  I love my low-functioning, severely autistic child.  I love her, the actual her, the truth of her.  And I know there are many, many other parents like me, and many, many other children like Janey.  I am going to try to keep being brave enough and honest enough to honor Janey by telling the story she can't---the story of a little girl, who, like every child in the world, deserves love exactly how she is.

Word Retrieval and Blaming The Cat

Yesterday, Janey tripped over a cord when I was vacuuming.  She screamed, and I turned off the vacuum and ran over to her.  She was fine---she didn't fall down, just lost her balance a little.  I started saying the things mothers say when their child is upset "What happened, sweetie?  Are you okay?" Of course I knew what happened, but there's kind of a patter that kicks in at times like that.  What surprised me was what Janey said.  In between tears, she said "Did Merg scare you?"

Merg is one of our cats.  He was nowhere near us at that time, and certainly didn't scare Janey.  I said "Merg scared you?" in surprise, and Janey said "Did Merg scratch you?"  With Janey's usual reversals, she meant of course that Merg scared and scratched her.

This incident made me think about how Janey's issues with word retrieval might be the cause of a lot of her anger and lashing out.  It so often seems like it's very, very hard for her to find the right words and sentences to use.  She knows what she wants to say, but she can't think how to say it.  So instead, she says something that DOES come to mind.  There was a time a few months ago when Merg did scare her, after she pet him a bit too much, and we asked her at that time "Did Merg scratch you?"  He hadn't, but the phrase stuck in her mind.  I'm sure we might have said then "Did Merg scare you?"  When Janey was scared by the tripping, somehow that script came to mind.

So often, Janey asks for things, and then when she gets them, she acts like you have done something very wrong in giving them to her.  I am thinking that many of these times, what she asks for is not what she wants at all.  She'll say "I want bacon!" or "I want Kipper!" when she wants SOME kind of food or SOME show, but not those specific ones.  And we, understandably, try to give her what she asks for, and I can imagine how frustrating that must be for her (and for us).

We have tried using visual aids to help Janey with this, like pictures of various foods or shows.  However, it often seems like the word retrieval is more than just not being able to say what she wants.  It extends to being able to point out what she wants.  She often brings us videos, videos she knows by pictures on them, and then when we put them on, there is again the fury.  Her mind seems to trip her up, like the cord did.  It isn't able to form either a word or a picture for what she really wants, although she knows what she wants in other ways.

It's hard to think of a solution to this problem.  It seems like there are circuits in her brain which just don't allow her to find words or pictures in an straightforward way.  I feel for her so much with this.  I can't imagine what it would be like to want something, to know it's possible to get, but to not be able to find the words to ask for her, or to be able to pick out the right picture, or write the word down, or really communicate in any way what it is that is wanted.

This problem also makes it very easy to unconsciously influence what Janey says.  Sometimes when we are desperately trying to figure out what is wrong, we give suggestions, and Janey grabs at them like a life ring.  For example, if she wakes up screaming, we might say "Do you want bacon?" and she'll echo that---"DO YOU WANT BACON?" So we think we've hit on it, only to make her bacon and see her get even more upset.  Even in the Merg-cat case, something we said months ago popped back up and lead to her accusing Merg of evil-doing he had nothing to do with.

At times, I feel like this problem with being able to communicate is a huge part of what makes Janey challenging.  Other children with autism seem to be able to use communication devices or programs like Proloquo, but I think that is when the problem is more with being able to use verbal speech.  Janey is easily able to form verbal speech---I think the problem is more being able to access in her brain either a word or a picture for what she wants.  And I wish very much I could help her more with this, help her communicate her wants and needs so we could better meet them.

School Starts, My Anxiety Rises

Janey started school yesterday.  Although her classrooms are sort of ungraded, she is starting 4th grade.

As always, although I'd been feeling a bit eager for school to start, the first day seemed to come suddenly.  However, we got out to wait for the bus on time.  It was supposed to pick up Janey at 6:29 am.  At 8:30, we finally gave up and drove her to school.  No bus showed up.  Not at all.  Now, if you have a child with autism, or, as a matter of fact, if you have any child at all, you can imagine that waiting outside your house for 2 hours for a bus that never shows up is not easy.  And of course, you can't go back in the house, because the minute you do that, the bus will show up.  Or you will think it might have.  It was a long 2 hours. The picture show the start of it, as Freddy was leaving for his first day of his senior year (he takes the commuter rail to school)

When we got to the school, we were told there were all kinds of bus problems, and that "you need to call the hotline".  Well, I had.  I'd called the transportation hotline twice at that point, each time was on hold for over half an hour and then was cut off.  I called twice more during the day, figuring that around noon there would be less volume.  One of the times, I stayed on hold for 45 minutes.  I never got through once.  When we were at the school, one of the school employees said something that is one of my least favorite things to hear "The only way to get this fixed is for you to stay on it as a parent".  NO.  I looked up and saw the staff directory for transportation for the Boston Public Schools runs twenty people.  That isn't the bus drivers or aides, that is the transportation ADMINISTRATION.  It is THEIR job to make sure kids are picked up by buses.  It is THEIR job to provide a hotline that actually works.  I am sure most of those 20 people make more than my husband does.  I emailed 3 of them yesterday, letting them know the bus never came.  No answer.  No surprise there.

I am ranting a bit here.  But it's this kind of thing that I find lacking in the schools.  There are wonderful teachers, principals, staff---I've barely ever met anyone that I would not trust my child to happily.  But it's a broken system in so many ways, and that affects the education.  For example, for summer school, the bus almost never actually reached our house before school was supposed to START.  It had more places to go before it got to the school, which is a 20 minute drive from our house even if you go straight there.  So the 5 hours of summer school was never 5 hours.  Janey's school this year runs from 7:30 to 1:30.  The bus showed up today at 7, with lots of other kids still to pick up.  They aren't going to get to the school. by 7:30.  And school seems to actually end at 1, not 1:30, to start getting kids on the buses, which is a huge job, I am sure.  So every day, there is teaching time lost, lots of teaching time.

These issues affect all kids, not just kids with autism, but like so many issues, autism makes it tougher to deal with them.  Janey needs consistency.  I considered just keeping her home yesterday, because if we drive her one day, she wants to be driven every day.  She needs the routine of the morning, not to get them when it's over.  She needs every hour of instruction she can get.

I realized yesterday part of what was upsetting me was that it was my first day in many years not taking a child to the Henderson School, Janey's old school.  I know she is doing well at her new school, and that there are great teachers and therapists there.  But I've never met her teacher in person.  She has a new ABA specialist this year, who I have also never met.  I don't feel like part of her new school.  I didn't know a soul in the office yesterday.  I felt the sting of having to change schools all over again.  I wanted the day to be like other first days, a happy reunion of friends I've known for years, with so many people greeting Janey and being excited to see her.  I have to remember that is MY issue, not Janey's.  I think she's happy where she is.

Rant over.  I feel better having written about it.  I hope everyone who reads this is having a great start to the new school year.  Sit back and have an extra coffee.  That is what I am about to do.

The TV Standoff

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

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

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

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

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

Trapped

Readers of this blog have told me that they like it that I am honest.  I do always try to be honest, but I also try to not be constantly downbeat.  I've been wanting to write today, but resisting, as I feel like I've been too negative lately.  I tried hard to wait until I felt more positive to write, or to filter out the negative and write only about the positive---how Janey went to the respite house for 6 hours on Saturday and seemed to do fairly well, how there was slightly less crying this weekend, how today she got a good report from summertime school.  However, I'm going tonight to one of my reasons I wrote about recently for blogging---to be a sort of diary, to use when I am needing to write it all out.  So here goes---

I'm feeling incredibly trapped lately.  Not trapped in the way that I want out of my life, or marriage, or any of that.  Trapped literally in the house.  This trapped feeling comes from how incredibly hard it is to take Janey anyplace, at least on my own, and how her needs keep me from getting away for any significant time.  I am feeling like the walls are closing in, and a lot of factors are working together to make it near impossible to kick that feeling.

Part of it is it being summer.  I grew up in Maine, where summer is the glory of the year.  I even then wasn't a summer person, but I spent nearly all my time outside.  I walked in the woods, swam in the ocean, read in a cluster of tall grass, went on little trips to the beach or to get ice cream (which living on a peninsula meant usually a drive to Rockland, a good half hour to get there), walked to the candy store 3 miles away---I was on the go.  That is the kind of summer I wish my kids could have.  My boys do, in the urban way.  They are very good at using public transit, and they can get wherever they want by bus and train and subway, and they do.  But Janey?  Taking her anyplace is so tough.  Today after school, I wanted so much not to just go home.  But Janey has been in screaming mode, and thinking of a place to take her was an impossible task.  Sometimes she will tolerate the grocery store, but we didn't really need groceries, and quite frankly, that wasn't what I had in mind.  I considered a park or playground.  Playgrounds just don't work, as Janey is now considerably bigger than playground age, and with her noises and lack of ability to socialize, it turns into a starefest, and Janey doesn't enjoy herself anyway---not worth it.  Boston has a lot of nice parks.  The problem there is dogs.  A nice park attracts dog walkers, and Janey is terrified of dogs.  Quite a few times, I've tried a great park near us, and wound up just dealing with a screaming Janey or a paralyzed with fear Janey.  Most of the dog owners are nice enough, but many of them also ignore the leash laws and let their dogs runs free, and if a dog runs up to Janey, despite how many times the owner might tell us that Sparky wouldn't hurt a flea---Janey doesn't understand that.  Restaurants on my own with Janey---ha.  We don't do restaurants.  Stores---almost never good. And so we came home and for the hundredth time, went into the back yard.  Where Janey does fine for a bit, sometimes half an hour, but then she screams, or decides she wants her clothes off, and that is over.

Part of it is also the social isolation that autism brings.  When the boys were little, I often got together with friends and their kids.  The kids would play, the friend and I would talk.  It was great.  But Janey has no friends like that.  And I feel like I've gone from having friends that I could spend time with to having friends that I rarely see, because both the friends and I understand that a visit with Janey involved is not a visit.  It's a shared child care time.  Janey will destroy their house, find anything non-childproofed, scream, wet on their floor, grab food---I wouldn't have me over either.  I talk to friends on the phone, but the long leisurely get-togethers---they never happen.  I miss them.

And part of it, I need to admit, is me.  I don't feel up to the challenge of taking Janey places.  I am tired all the time, from her not sleeping.  I can't run fast enough to catch her if she got away.  I have a very hard time with the stares, and the stares always happen.  It is easier, at least physically, to mostly stay home.  But mentally, it takes a toll.

This afternoon, I felt I just couldn't stay home another minute.  I begged Freddy, who wasn't working, to go with us someplace, any place.  Freddy wanted to shop for shoes.  So off we went.  As soon as we got in the store, Janey started crying and screaming.  I tried hard to ignore it.  I walked her around, had her look at mirrors, talked to her.  But the screaming got louder and louder, and it was impossible for us to shop, to say nothing of anyone else in there.  We left within 5 minutes.  In the car, I opened up to Freddy more than I usually do about how discouraged I felt.  I try not to do that with the boys, ever.  They need as close to a normal life as they can get.  But I felt bad for him, not being able to do such a basic thing, I felt bad for Janey, being so tortured by whatever demons torture her that she couldn't tolerate a normal store and I felt bad for me.  I mostly, at that moment, felt very bad for me.  Which I'm not proud of.

I long to put Janey in the car and drive---drive to some faraway place.  My fantasies don't allow me to drive away on my own.  I can't do that.  But I wish I could take Janey and escape this house, this life, even for a day or two.  I wish the autism was something I could leave at home, not for good, because Janey's autism is part of her.  But for a few days.  I wish I could have just a little, little, little vacation from the autism, for Janey and for me.

The Noah's Ark Book

Lately, Janey has been asking me to read her books.  Or if sometimes not exactly asking, at least listening willingly when I read her books.  This is quite new.  Her school has a reading contract due every Friday, where a parent has to write down four books they have read to their kids during the week.  With William, years ago, this was very easy---I had usually about 50 books to choose from, and although Freddy wasn't quite as into books, we still certainly always read more than four in a week.  I love to read to my kids.  It's just about my favorite thing to do.  But with Janey, although I always had read her the four, and almost always more, it often was more like me reading the book while she didn't listen and ran around the house.  Now, though, she is sitting by me, listening and even often gesturing me to point to the words as I read.  That just about freaks me out with happiness.

A few days ago, I was reading her the Lucy Cousins version of Noah's Ark.  Lucy Cousins is the artist behind Maisy the Mouse, and I love her books.  On a few of the pages, there is a big spread with pictures of all kinds of animals.  When we got to that page, on impulse I started asking Janey to point to the animals.  Well, she did.  She pointed to every last one I asked for, and that included such animals as flamingos and scorpions.  She pointed to them quickly and easily, eager, I think, for me to stop asking questions and just read.

When Janey does things like that, my emotions and thoughts run wild.  I am very proud and happy, of course, but I also am frustrated.  Janey obviously knows so much more than she lets on.  WHY does she talk so little?   Why can a day go by and you'd have no idea she knew such basics things as her brothers' names or any words beyond her few preferred ones?  How can she knows what a lizard is, what a ladybug is, but never, let on?

I don't understand why Janey's speech is so restricted.  She CAN talk---the fact that she can recite whole poems and, when push truly comes to shove and there is no way to get around and she really needs to ask, can she ask us by name for such foods as pickled cabbage and duck sauce?  It seems like every new word she actually uses verbally without it being part of a recitation costs her dearly, and she needs to preserve her savings.

On my better days, Janey fascinates me.  I wonder what it's like in her mind.  I wonder how it feels to have all that knowledge floating around there and usually no way to get it out.  But on my less better days, she breaks my heart.  I know how frustrating her life must be, far more frustrating than it is to be me, on the outside, wishing I could get in and truly understand her.

Biting despair

Janey developed a new habit about a month ago.  She bites her upper arms when she is angry---mostly the right one, but now sometimes the left too.  It's a horrifying habit.  Her arms are constantly red or bruised, she hurts herself to the point where she is crying for a band-aid, and there seems to be no way on earth to stop her.  

She started it at school during a tough week.  Tony and I saw her badly bruised arm and just didn't know what was up.  I never thought anyone at school was hurting her, because I know they wouldn't, but I thought she might have smashed up against something at school.  I could tell the bruise wasn't from being grabbed or pulled by another kid, because it was only on one side of her arm.  Finally, after a few days over a weekend trying hard to figure it out, Janey got mad and did the biting at home.  It was a little bit of a relief to know what was causing the bruises, but that was quickly followed by a complete lack of ways to prevent it.

For a few weeks, Janey was biting less and we hoped the behavior was just ending.  However, this past week has been very rough.  We've had the sleeping problems, and Janey has seemed endlessly irritable.  And the biting is back---big time.  Now it seems to be the first thing she does when we say no about anything.  She asks to go get ice cream at 2 in the morning, we say no, it's the middle of the night, and she bites herself.  We've tried everything we can think of.  We've held her hands, which works only if we can get to her in time, we've tried putting on an ace bandage so she can't bite as well---she takes it right off.  I bought her hand core biting toys---actually dog toys, because I don't think the average Chewelry or whatever it's called works for SERIOUS biters like Janey.  She just bites them up.  The dog pretzel will hold up to her, and she does like biting it, but it doesn't replace the arm biting.  Somethings seems to compel her to hurt herself, and it's killing me.

Today, when talking to her teachers about strategies we could try, they told me she has also started to bite them now and then.  This is something she's done once in a while at home too.  It's usually done when she is hugging.  She puts her mouth against my chest and then suddenly seems to have an impulse to bite down.  It's hugely painful.  I come down very hard on this---screaming at her as loudly as I can, to startle her and let her know it's completely unacceptable, and this seems to have decreased her doing it at home to once in a long, long while.  But all bets are off right now, with this current trend.  

I worry about biting so much.  I know if she starts biting the kids in her class, that could be something that the school would get pressure to remove her for.  They wouldn't want to---the wonderful aide in Janey's room actually said if they would give Janey a one-on-one aide for the summer, she would be that aide, after having been bitten even, but in talking to the special ed team leader, who does Janey's IEPs, I found out it would be very hard to get that aide at this point.  The leader said that the summer school staff would be well trained to handle biting (in the summer, Janey is with all autistic kids).  I hope that is the case.  She is going to speak to the ABA supervisor for more ideas.  Mr. Ken, Janey's ABA therapist, has been very on top of this too, and called me yesterday to talk about strategies.  Everyone is working on this, but in the end, no-one can really keep Janey from biting.  We have to make her want to stop, and I just don't know how.

In my new resolve to assume Janey understands what is said to her, I've talked to her a lot about the biting.  I've told her I understand she gets angry or scared feelings, and she knows most of the time she shouldn't bite other people, but that she absolutely shouldn't bite herself either---that biting hurts her, that it makes things worse, that it scares me, that it will make her have a painful place on her arm for a long time, that she needs to stop, that we will do whatever we can to help her stop.  She doesn't act like she is listening, but I hope she is.

I've been thinking about the autism acceptance movement.  I believe in a lot of the parts of it.  I do accept Janey, but there is no way on earth I can accept her hurting herself.  I can't see autism as a positive when it leads to that kind of horror.  I wonder how that fits into that philosophy.  I'm struggling to see how in the world acceptance can stop behaviors like this.  I guess if I could explain to her that I accept her anger and frustration, but not the biting, that would be one way, and I hope I am explaining that to her.  But she has almost zero impulse control.  Even if somehow she is understanding that, when the urge to bite hits, I am pretty sure she isn't thinking about anything but her anger and how she wants to bite herself to deal with it.

I have to admit this has me in a bit of despair.  If anyone has dealt with this, and/or has ideas, I'd love to hear them.  If you don't, thanks for being there just to listen.

Assuming Janey understands---the tough part

I've been trying this weekend to assume Janey understands far more than she lets on.  I was inspired to do that by what she said to her teacher for next year, which I wrote about last time.  I know that at the very least, Janey understands more than she says. But what is making this hard for me is what it would mean if it were true.

One part of it is what the wonderful blogger of On the Train With Sophie commented.  It's too hard sometimes to hope for that, because if we come to believe it, it will be that much more of a fall if we realize it's not true.  I am like that in life.  I keep my expectations low.  I'd almost always rather be surprised by something going better than I expected than be disappointed by it going not as well as I expected.  But for the sake of Janey, as she said, I want to take the plunge.  I want to believe Janey can understand and do and learn far more than what she shows right now.

However, I think what is feeling even harder to me is trying to figure out how exactly I deal with Janey's tough behaviors if I assume they come from a place of understanding.  Somehow it's easier for me to accept Janey being aggressive to me, or biting herself, or spilling things all over, or staying awake all night screaming or laughing, if I assume she doesn't understand in any way what she is doing.  I can accept more than she lashes out without understanding at herself or others, or that she spills the soda all over the floor because she has no idea it will bother us, than thinking she understands just what she is doing.  Because if that is the case, what kind of torment is going on in her mind that would make her bite her own arm hard?  What would make her want to hurt me with biting?  Why would she do something that she would know would make us furious, that she knows causes a huge fuss and scene?  Is she that sad, or that angry?  That is hard to think about.

I've been trying talking to Janey about things she does, like I would talk to any eight year old that would understand me.  I explained why biting herself is a very bad idea, and I talked about knowing sometimes people feel very, very mad, and that it's fine to say or just to think "I am very mad at my mother!", but that biting is not okay.  I tell her that she can bite a pillow or a blanket or toy, and I've been trying to catch her doing that and praising her for that.  Sometimes she seems like she is listening, but I don't know.

Tonight, as I got Janey to sleep, I talked to her.  I told her that I think she understands a lot of what I say, and that I am going to try harder to keep that in mind.  I told her I loved her, and that I know it must be very, very frustrating if she doesn't have a way to tell me why she does the things she does, or what she is thinking, or what I can do to help her.  I told her I am trying to be the best mother I can to her, but that I know I've made mistakes, and I hope she can work with me.  I don't know if she understood me.  I never know.  That's the hard part.  But it felt good to talk to her that way.  I'm going to keep on trying.

It's the middle of the night; I'm a little fed up and I need sleep now

Janey has been up for two hours, after going to sleep grouchy about 9.  It's not a lot of fun.  Tony is currently trying, as I write, to get her to sleep, and I am trying to not project, to not think about how tired I will be tomorrow, to not think about how this might be the start of a hellish cycle, to not think about the many years ahead that right now stretch out endlessly, full of sleepless nights and frustration.

Janey has been making a long string of requests posed as questions---

Do you want me to get you an onion?

Do you want me to turn on the light?

Do you want me to pour you soda?

Do you want me to watch Kipper?

It's pronoun reversal middle of the night autism demonstration time.  We answer no to all, without bothering to try to correct the format of the speech.  It's not the time to worry about semantics.  

Janey is jumping up and down and reciting a favorite Kermit dialogue, Kermit arguing with the Count about what an elevator operator is supposed to do---"You're SUPPOSED to take people to whatever floor they want to go to, and I WANT TO GO TO THE SEVENTH FLOOR!"  She laughs hysterically, and recites it again.  After the 10th time or so, it seems kind of funny to me too, in an crazy sleep deprived way.

We try reasoning with her, which is useless.  We try bargaining with her "If you will stay on the bed, you can play with your iPad.  If we get you water, will you sleep?"  She agrees to anything, but it's meaningless.  These are not binding contracts, and she knows it.

My grass pollen allergies, delayed by the cool weather, have chosen tonight to kick in full gear.  I am sneezing and sneezing, each time causing Janey to recite something funny she heard one time---"A-shoe, A-sandal, A-sneaker!"  She cracks herself up every time.

I send an email to cancel plans I had for tomorrow.  It will be a napping day.  I wonder as I often do how Tony makes it through the day.  I wish he'd call in sick sometimes when he doesn't sleep.  I worry about what all this sleep deprivation does to him.  Isn't that what they do to torture people?  In the night, in my own state, it becomes a scary concern.  Thoughts get dark when you are tired and can't sleep.

The least affected by all of this is Janey.  She never seems tired the day after this kind of sleepless night.  Her system doesn't seem to work that way.  She doesn't even sleep late the next morning, usually.  She's up at the regular time, ready to rock and roll.

I am trying to keep positive.  I am going over in my mind all the other sleepless mothers out there, and the ones in far worse positions than me---awake in a hospital watching a sick child, awake worrying about a child that hasn't come home, awake because they don't have a bed.  But sometimes, the contrary part of me thinks about all the people that have it easier instead.  That's not useful.  I think about articles I read where a parent is freaking out over bad grades, a sassy mouth, not eating vegetables.  I wonder if they realize what a miracle they have---a child than can talk, can understand, a child with a bright future.  Sometimes late in the night I don't think nice thoughts about those parents, even though I am those parents, with two sons that have bright futures.  

Janey is still awake.  She is still jumping.  So I will think about the parents I know must be out there right now, staying awake with their own autistic child.  Parents living my same life.  I wish I could talk to them, right now.  That we could all feel less alone in our own houses, getting through our own nights.  I hope we can all help each other make it through the nights.

The Grocery List

Tony told Janey this afternoon he was going to take her to the grocery store.  She was quite happy, as she loves going to the store.  A few minutes later, she brought us the little notepad Tony uses for grocery lists.  We told her that was great---she had made the connection between the list and shopping.  But then she found a pen and grabbed the pad, and looked like she was going to try writing on it.  That was unusual---at home anyway, she has little interest in drawing or scribbling or any pencil to paper activities.  Then she stopped, put down the pad and started to scream.  She'd been having a banner weekend, and had been cheery for days, so we were startled.  She yelled for a bit, and then said "GREEN CANDY!"  Green candies are those striped round mint hard candies---she loves those.  And we figured it out, or we think we did.  She wanted to put "green candy" on the list.  Tony right away wrote it on the list, and drew a little picture next to the words, and showed it to her, and she seemed a bit calmed down.

The whole episode brought up a lot of questions and emotions in me.  First, did we interpret correctly?  Figuring out what Janey is trying to say is often a puzzle.  Did she just say green candy because she was trying to comfort herself when she was upset, maybe because she wasn't on the way to the store yet?  I guess I'm a natural skeptic, but I often default to assuming Janey isn't meaning to convey the more complex meanings that some of her actions could be interpreted as.  But assuming she was wanting to write green candy on the list---well, that's a little heartbreaking.  It would mark the first time we were aware of her being aware of her own disabilities.  She knew that people can write things down---the kids in her class write all the time.  And she knew that Tony wrote things on that paper to remind him to get them at the store.  So she got the notepad and then, boom, it hit her.  She couldn't write.  She had no idea how to put green candy on the list.  And that would be a sad moment for anyone.

Or I could do as I would like to do more often---see this as an opening, see it as a good thing.  She was making a cognitive breakthrough---getting what writing is all about.  That's a much cheerier way to look at it.   But it would be more cheery if I felt she was within any kind of reach of being able to write.  She has very few even prewriting skills.  Once in a while, she can make a J, or try at a circle or line, but that has taken years and years to get to, and it's pretty hit or miss.  I should, if I were being less of a negative person, think about technology---how she could use her iPad to make a list, how we could take a picture of the green candies and use them to start teaching more more iPad communication.  But she has shown huge resistance to any attempts at that.  Her calm, happy state lately has come about partly because of my realization about how much she gets stressed by my attempts to teach her---I'm going to write about that soon.  She is much more willing to learn at school, but even there, it's slow, slow going.

So I'll say honestly my main feeling today at her frustration was sadness, because she was sad, and because it seemed like she realized what she couldn't do.  Tony and I talked about how we had almost hoped that day would never come---the day when she realized she was different than other kids, and couldn't do the things other kids can do.  And it might not ever come fully, but today felt like a little bit of that knowledge had hit her, and it's hard to for me to see that, and I am sure, harder for Janey to feel it.

The less glamorous side of autism

You out there in non-autism land might be thinking "Wow, this autism gig sounds like something cool!  A quirky interesting kid, and one with the hippest condition out there---one all the celebrities are into right now!"  Well, of course there's a lot of glitter and excitement in our world, sure, but it's not all red carpet parties and fascinating breakthroughs.  No, there are times that autism is, well, just a bit less than glamorous.

Today was one of those times.  There was no school here, due to Evacuation Day.  What, you've never heard of Evacuation Day?  Why, it's every single March 17th!  Isn't that ANOTHER holiday, you ask, the big Irish one?  Well, yes, but it's just PURE coincidence that Boston and surrounding towns celebrate an obscure Revolutionary War era holiday on St. Patrick's Day, and give kids and city employees a day off for it!  Today, actually, it became a Monday holiday, as Evacuation Day was yesterday.  And no, I didn't get my cards out in time, so you've have longer to wait if you've been waiting for my family Evacuation Day letter.

Janey woke up grumpy and crying.  I managed to get her happier with a long bath and a watching of Taratabong, a great Italian-made preschool music show that is on Netflix.  Later, I took Freddy and her to get a book Freddy needed, and we went to Five Guys for lunch, a place that has often freaked Janey out, but we did the trick today of getting there just as it opened for lunch, so it was empty.  Janey was perfect there---she did feel she must dance to the music in the background, which she always notices, but she didn't bother anyone as no-one was there, and we ate well.  Then home, and Freddy watched Janey for an hour so I could have a little rest.  So far, not a bad day.

Then, when my break was over and Freddy had gone to play video games on another floor, I was sitting on one couch reading and Janey was sitting on another watching her new favorite video, Mickey's Magical Christmas (she doesn't mind out of season videos at all).  All was quiet.  I must have been caught up in the book for a minute or two, but then looked up at Janey.  My first thought was "How the heck did she get into chocolate frosting?"  My next thought was "We don't have any chocolate frosting around"  My third thought is unprintable.

Janey was covered---her hands, her face, her hair---covered.  Mind you, this was while I was IN THE ROOM with her.  She had silently reached into her pull-up and pulled out the contents.  I screamed "WHAT HAVE YOU DONE?"  I know I shouldn't yell, but I defy anyone on earth to not scream in that situation.  Then I took hold of both her elbows, to prevent her from touching anything, and let her to the bathroom.  It is crucial to note here I threw on my shoes, which were right there near her.  I gave her a bath---actually, 3 baths, because the first one got pretty disgusting in a minute.  I had to take her out, empty it, clean it, disinfect it, do a second bath, and then repeat steps.  When done, I threw back on my shoes and walked her out to get dressed.  It was then I noticed my feet, and indeed my shoes, and the floor, were covered with, well, you know what.  Evidently her accident had somehow gotten into my shoes, and I walked the shoes all over.  The floor near the couch was still a disaster area, but that had to wait while we went back to the bathroom and I locked the door to keep Janey in and took a shower, and then cleaned my shoes, and then washed everything again, and then went to the living room to clean that up, and then scrubbed my hands again, and then sat down and cried.

Last summer, I thought Janey was almost toilet trained.  Yesterday, she used the potty very nicely several times.  However, obviously, she is not totally trained.  Not even close, really.  Thank goodness, she doesn't seem to have ever done this type of mess at school.  She holds that for home.  Which in itself shows she does have some control.  Once I was done crying, I started the attempt to make her understand.  She repeats the lines very well---"We NEVER touch our stinkies!  That's too silly!  That's naughty!  That makes Mama sad!  I'm sorry!"  Yeah. I don't know why I bother with the lectures.  I guess they make me feel better.  She is great at repeating things.  That doesn't mean she gets or means a word she is saying.

Things are getting better with Janey.  Tony and I both think so.  Very, very slowly, overall, things are getting better.  But it's still very, very tough with her.  I have to believe some day she will be trained completely.  I have to believe that, because I don't think I could much stand not to think it.

How do I react to hitting?

Lately, Janey has been hitting me.  I don't think she hits anyone else, but when she's angry or frustrated or told to wait for something, she's lashing out by pounding on me.  She doesn't hit hard enough to hurt me yet, but obviously I don't want this behavior to continue until she can hurt me.

I did a quick search today for autism and hitting.  I was a little underwhelmed with what I found.  Almost all the "expert" advice I could find seemed to be pretty useless.  Much of it dealt with trying to understand the underlying reasons for the hitting.  I think I know the reasons---it's hard for Janey to talk, she gets easily upset, she sees me as what is standing in the way of her getting exactly what she wants when she wants it, so she hits me.  The advice on how to deal with the hitting all seemed designed to keep parents from hitting back.  I strongly don't believe in hitting back.  I am not about to do that.  It doesn't teach kids not to hit to hit them.  The alternatives they gave were not ones that work---time out, calm voices saying "we don't hit", giving something alternative to hit, ignoring the hitting.  They are safe alternatives, but they don't stop the hitting.

My view is that I need to do something about the hitting that does two things---it stops the hitting in its tracks and  discourages hitting in the future, and it's a natural response---one that I can do every time.  I don't think Janey has the self-awareness or forward planning to be think through not hitting in any kind of complicated way. I need to STOP the hitting, to prevent it from getting worse, to keep it from becoming a habit.

To stop the hitting, I need to do something Janey doesn't like when she hits.  She doesn't like loud, sudden sounds.  So I am trying looking her directly in the eyes and saying very loudly, almost yelling "DON'T HIT ME!"  Then, I walk away.  I don't give her what she wants, or any more attention until she asks me a way that doesn't involve hitting.  Of course, I still need to be watching her, as I always need to be watching her.  This works for me.  It's a deterrent, it's honest, it expresses my feelings, it doesn't involve any hitting back, it doesn't give her what she wants for doing something negative.

I am mixed about making Janey say she is sorry.  It's pretty fake---she isn't sorry, I don't think, except sorry that she didn't get what she wanted.  But on the other hand, we need to learn to say things that society demands.  We teach Janey to say "Hi!"  We all say "How are you?" when we might not care how the person is.  So we can learn to say "sorry" as a word that is used after you do something mean, even if the emotion isn't all there.  I tend to wait a little bit, until we both aren't as angry, and then ask Janey to tell me she's sorry and with a lot of prompting, she usually does.

In this case, I believe in treating Janey much as I treated her brothers.  When something like hitting is involved, it's important to deal with it clearly.  Long talks about why it happened, long calm discussions---they just don't work.  Kids need the clear message that hurting people is not acceptable.  Recent events back that up.  So far, it seems to be working with Janey. We'll see how it all plays out, like with everything else to do with her.

Other autism blogs

I was reading a few other autism blogs, and it was depressing. So so so many kids that are diagnosed with autism seem so much higher functioning than Janey. It almost makes me mad---I want to say "That isn't autism! That's just a quirky kid! I HAVE one of those---it's nothing like having a kid that REALLY has autism!" But of course that is mean and unnecessary. I just felt upset reading about kids that can read at 5 and have interesting insights and so on. Janey doesn't have any interesting insights. I really wonder if she will ever read, or even learn her letters. Her latest hobby is spreading the content of her diapers on things. She is talking mostly in Kipper dialogue. She is not getting better.

The other thing that bugged me is how literary the blogs all were, like they were a contest to seem intellectual. I can write as prettily as the best person, but that isn't what I see this being for, but I have to remind myself---that's just me, and I am writing this FOR MYSELF mainly. I just wish I could find someone like myself, with a girl with autism who is fairly low functioning. Or a boy. Someone who hasn't bought totally into any one philosophy and is skeptical of all treatments, someone who knows the difference between mild Aspergers that might turn into no Aspergers (which was my son William's story) and hard core autism.

This is a nasty post. But it's how I'm feeling right now.