"Kitty" or When Will I Ever Learn?

A lot of my time with Janey is spent doing what she calls "Snuggle on Mama's Bed".  It's in fact her bed, not mine, but we do snuggle.  Generally, we just lie there next to each other and talk.  Or I talk, and sing, and tell stories, and read books, and so on, and Janey smiles and laughs.  She talks very little, most of the time, but she's very happy to just be there together.

Sometimes, this snuggle time can start to feel like a one man show.  It's a very well received one man show, but still, at times I feel like I'm running of material, and I wonder if it really makes a difference what I say or do at all.

Last night, after a good long time snuggling, I said to Janey "You know, I know in your mind you are thinking a lot of things, and listening to what I'm saying, and maybe wanting to ask me things, but you aren't saying them out loud.  I can't hear inside your head.  I can only hear things you say. I love to hear you talk.  If you said 'Kitty' right now, I'd be very, very surprised and happy!"

Some background---Janey loves me to act surprised.  I'll often go through pretend emotions while we're cuddling, saying that I'm going to show happy or sad or angry, but her favorite is always surprised.  I'll ham it up, opening my mouth wide and waving my arms around.

For a few minutes after I talked, Janey just looked at me with a huge smile.  And then she quietly and sweetly said "Kitty!"

Of course, I played it up---a huge show of surprise.  She smiled her huge, wonderful smile.

And then, as I so often do, I had to push her.  I said "You know, if you said the name of one of your brothers, I'd be VERY VERY surprised!"

I hate it when I do that.  And I'm always doing it---looking for just a little more, trying to force Janey to prove again what she just proved, what I already know, that she's almost always listening and understanding what I say, whether she shows it or not.

After I said the brothers line, I saw the look that breaks my heart, the look that shows she's shutting down.  Her eyes lose their glow, and look away.  She looks not happy but instead tense, worried.  She sees that now we aren't playing a fun game, but instead are in the midst of quiz time, testing time.

We stayed there cuddling for maybe ten minutes more, and she never did say "William" or "Freddy".  I made myself stay quiet.  Finally, I said "William and Freddy!  That's the names of your brothers!"  But still, she had the tense look.

Why do I do that?  I KNOW she knows her brothers' names.  I KNOW she listens to me.  Why do I have to get it proven to me, at the cost of her happiness?

And of course this relates to the problems with ABA type programs.  They are all dependent on the child having to prove over and over and over and over that they do know what they know.  In a way, they seem especially designed to torment kids like Janey.  I don't think all kids with autism are like Janey is, in her strong negative reactions to being quizzed, tested on what she's already shown to know, but I think a lot of them are.  Once Janey knows something, she knows it.  She's shown over and over that she doesn't forget anything.  But she's not always going to perform on demand.

I'd like to say I'll never make the mistake I made last night again.  I'd like to think I've learned, and I'll stop pushing her to re-prove she is listening.  But I will probably do it again.  I'm a slow learner, and I don't always remember what I've learned, unlike my sweet girl.

Janey in Lists

Things Janey loves to eat

Juice from the pickle jar
Spaghetti sauce
Boiled greens
Cheddar cheese---must be freshly cut from a big block
Cherry tomatoes
Onions with the skin on

Movies Janey likes

Home
The Spongebob Movie
Coco
The Little Mermaid 2
Hercules
Care Bears---Journey to Joke-a-Lot

Janey's biggest talents

Remembering tunes and lyrics of songs
Smiling in a way that lights up a room
Her sense of humor
Her beauty inside and out
The special way she has of uniquely connecting to each person she loves

The most frustrating things about Janey

When she screams and we can't figure out why
That she isn't fully toilet trained
When she bites her arm
How upset she gets when one time out of a hundred, we insist on watching our own TV shows
Her utter lack of patience

Janey's favorite things to do

Car rides
Showers
Dancing
Snuggling
Eating
Rearranging furniture
Rearranging cats

The toughest parts of being Janey's parent

The need to absolutely constantly be on alert
The tiredness when she doesn't sleep
Cleaning up difficult messes
The very loud screaming
Over ten years of the same TV shows

The best parts of life with Janey

Seeing her happy
How often she makes us laugh with her
The many, many times she surprises us with what she says and does
The wonderful people I've met that I wouldn't know if I didn't have her
How she brings our family together

Janey's favorite music

The Beatles
Toby Keith
Christmas music
Black Sabbath
Meat Loaf
Weird Al
The Ventures
Nursery rhymes
Show tunes

Janey's most said phrases

"Snuggle on Mama's bed?"
"Want to take a shower?"
"Go for a car ride?"
"Want to go away?"
"Go to the ice cream store?"

Things Janey hates

Hair brushing
Coming home after a car ride
People saying "just a minute!"
Cats that keep coming back after they are rearranged
Being out of cheese

Things I think Janey could do if I could figure out how to unlock the keys

Read
Use remotes
Access much of her vocabulary
Consistently use the bathroom
Sleep on a regular schedule

My biggest fears regarding Janey

That someone will hurt her when I'm not there to protect her
That she get sick and not be able to tell me what is wrong
That she will somehow get lost
That when I someday die, she won't understand why I left her
That when I am gone, she will not be taken care of

Janey's request and how it hit me

Janey running down the driveway

As the weather gets more summery, Janey loves to be outside.  Her favorite thing to do is just to run around our driveway.  The driveway is fairly long, and on a slope, and she does laps, and sometimes yells out in glee as she runs down the slope.  She seem to enjoy just being in the sun and wind and weather.

Last night, after a car ride with Daddy, I went outside and sat on the steps by the driveway to keep an eye on Janey as she played.  After a few minutes, she came over to me and said "Want to snuggle on Mama's bed?"  I took that to mean what it usually does---that she wanted to go in and have us both get on her bed for a snuggle (the bed is Janey's, but it seems to be named "Mama's Bed")  I started in and waited for her to follow, but she didn't.  I said "Come on in, Janey" and she then said what set me back "Want to go away?"

Janey says "Want to go away?" a lot now, but until now, always inside.  She often wants me to go in the next room, to get out of her sight a bit.  I try to do just that, whenever I can.  She has a right to time to herself.  Of course, I'm always keeping my ears open, and every few minutes, taking a peek to make sure she's okay.  She almost always is, or if she's doing anything that I need to stop, it's things like fixing herself a bowl of salad dressing like one would have soup, or trying to re-arrange the cats when they don't want to be re-arranged.

Up until yesterday, though, Janey had never asked me to leave her alone outside.  And, of course, I can't.  I can't leave her alone outside, ever.

I tripped over my words in answering her.  I wasn't expecting the request.  I said something along the lines of "Mama has to stay out here with you.  You're not big enough to be outside by yourself.  I need to be here to take care of you".

Of course, Janey is old enough that if she were typically developing, she could certainly be outside by herself.  She's 13.  When I was 13, almost every day after school I walked through a little woods across from our house and spent hours at the shore, exploring the rocky banks of the St. George River in Maine.  I love being alone.  I always have.  I crave that time alone.  I'm not sure if Janey notices, but if she does, she's probably seen plenty of girls her age without parents, walking down the sidewalk or in stores or the like.  But she can't be those girls.

We live on a very busy street, one almost like a highway.  Janey has never run into the street, but I live in fear of it.  There is also lots of foot traffic on the sidewalk, people I don't know and obviously can't leave a mostly non-verbal child with no understanding of the dangers people can pose alone outside.  If none of those were a danger, there is the fact Janey sometimes eats non-food items, that she might decide to push aside a stray cat or dog, that she just simply doesn't have the skills or knowledge to take care of herself alone.

Janey gave me a long, hard look after I said no.  She didn't cry, or repeat her request.  She just looked at me.  I was almost crying.  I couldn't say something like "not right now" or "when you're older".  The truth is---it's very unlikely, pretty much completely unlikely, that Janey will ever, ever be able to be on her own in public.

After a few minutes, Janey headed to the door and we went in.  She seemed to be over my "no".  But I thought about it for hours.  I can't imagine a life where I would always have to be watched, supervised, taken care of.  Maybe Janey doesn't feel that way.  I don't really know.  I guess I hope, I hoped, she didn't.  It's easier to hope that, to hope she doesn't see how her life is limited.  As she gets older, as she gets to ages I can so vividly remember being, as I look at her and see a beautiful teenager, sometimes my heart breaks for what her life can't be.

Thanksgiving 2015

Last year, Janey spent Thanksgiving at Bradley Hospital, hospitalized for her increasingly agitated and aggressive behavior.  This year, she was home.  That alone was something to feel very thankful for.

There's a lot else to feel thankful for, of course.  There's my husband and sons, three amazing, brilliant, kind and interesting people.  There is Janey herself, my beautiful, fascinating daughter.  There's my extended family.  There's my friends, including all of you.  There's the fact that we have enough to eat, and a roof over our heads, and don't go to bed at night in fear.  That puts us far up on the things to be thankful for scale compared to so many in the world.  There's the many other things that make life worthwhile, for me anyway---books, cats, Scrabble, music, coffee---all of life's little pleasures that really aren't that little in terms of the pleasure they bring.  And there's just the fact we are all here, seeing another Thanksgiving Day.

It wasn't an easy day, really.  The thing about autism is that it never, ever takes a holiday or vacation.  It is with Janey always.  I wish so much she could have a day off from it now and then (and that we could, too)  The 2015 version of Janey has a hair-trigger.  She gets instantly, overwhelmingly upset over things she doesn't like, and there's a long list of things she doesn't like.  The anger, though, doesn't last a long time.  Within five or so minutes, she is usually not screaming.  But the screams are a daily, or pretty much really an hourly, occurrence.  They make it very hard to relax, ever.  We had our big meal upstairs with my brother-in-law.  The food was good, the conversation was good, but Janey was unhappy.  She screamed and flung clothes around and was generally extremely unhappy.  We were determined to eat anyway, together, something that I must admit doesn't get done a lot with our family.  But as soon as we finished, before dessert, I took her downstairs.  There is only so much that we can make her endure, and, honestly, endure ourselves.

Autism is our reality.  It's a huge, huge, huge part of our lives.  And I am not thankful for that.  As I think I've said before, I am hugely thankful for PEOPLE with autism, such as Janey.  But I am not thankful for Janey's autism.  I very much understand it when other people ARE thankful for their autism, or their children's autism.  But Janey's particular breed of autism takes away far, far, far more from her life than it gives her.  She is so unhappy so often.  She is hurting, and not just mentally---she bites her arm constantly, and not lightly.  She is unable to participate in so much of life.  It would be cruel for me to say I'm thankful for what autism has brought into our lives---the devoted teachers, the wonderful friends, the fascinating glimpses into Janey's unusual mind.  I AM thankful for all those things, but it's like saying "It's okay that Janey has to suffer so much, because it has brought us some very good things"  

So I will say to all of you reading this---you are a remarkable bunch of people.  I'm glad I know you.  But I wish we could have met under different circumstances.  

Happy Thanksgiving.

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

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.

It's all stored up there somewhere!

A week or so ago, Janey woke up saying "You want your Bruno dog?"  Translated, this means she wanted Bruno.  Bruno is her cousin Zeben's dog.  She last saw Bruno about 2 years ago.  When he was here, she paid almost no attention to him.  She wasn't scared of him---he's littler than our cats---but she wasn't interested in him at all.  I never heard her say his name, and I had no idea she ever knew it.  She hasn't talked about him in the past years, and we haven't talked about him more than in passing.  Yet somehow, his name was stored in her mind, and something made her suddenly want him.

I've realized more and more that almost everything Janey hears, sees or experiences is stored in her memory.  We might not known it, there might not be any way to readily get her to let us know she can access those memories, but it's all there.

Thinking of that, I've been thinking how important it is to keep giving Janey new experiences, new things to learn, even when it's hard doing so.  I'm thinking of my trip to Maine.  The sleep issues and the screaming made parts of it tough, but Janey experienced a whole, whole lot in a few days.  She got to spend extended time with her grandparents, she got to climb rocks and see alpacas and go to a fair and sleep in a travel trailer.  All that is in her head, somewhere.  It's not lost.  Some day, when I'm least expecting it, a bit of it will be spoken of by  her, or she'll do something that shows me she learned from all we did.

A few more examples I saw today----Janey saw two of our cats sleeping, and said "Tommy and Ash!"  She's said Tommy before, but none of us had any idea she knew Ash's name.  He's the shy cat, and she has never before referred to him.  Later, she was having a good loud scream.  I was using my most recent strategy, which is making sure she isn't hurting herself or in the position to hurt anyone else, and then just saying "I see you are screaming.  Tell Mama if I can help you" and then just waiting it out.  I don't think Janey likes that strategy much, but it seems to work as well as any.  However, today, she said "Want to go to the screaming bathroom?"  I wrote here---link---about the Screaming Room, another screaming strategy I'd tried in the past with Janey.  It involves going into the bathroom with her and staying there with her until she stops screaming.  I'd given up on in a few months ago, but I'm going to give it another try, if that is what she is asking for.  It was the first time I remember her asking for a specific way to help with her difficult behaviors.

One of the hardest things for me about autism is the lack of feedback from Janey.  It can feel sometimes for days like I am talking to myself, like I am trying so hard to help Janey and nothing is getting through in the slightest.  But that isn't true.  I need to remember that.  Janey is learning all the time, and I love the rare times she lets me know that.

Puzzlers

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

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

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

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

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

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

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

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

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

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

Sally Cat and Regression

Sally Cat showed up today.  She does, now and then, I guess when I am in need of a good cry.  She is a pink stuffed cat that meows when you push on her.  She was bought when Janey was 2, on a trip to the Gap.  Janey asked for her, and although she needed a new stuffed animal not at all, I could tell it would be a battle not to get her, so I gave in.  One of the many things about Sally that makes me cry is that that was probably the last time Janey ever asked for a toy in a store.  I wish I had bought her with enthusiasm.

Janey loved Sally, for a brief period---probably about four months.  She named her herself, when I asked her the name.  I don't know where she came up with Sally, but at the time, I didn't wonder that much, as you know two year old---going through that language explosion and saying all kinds of things.  We took Sally everywhere we went, and she was part of the family, as kids that age get with a favorite toy animal.  Then came the summer of 2007, and the horrible regression.  By the end of the summer, Janey no longer had any interest in Sally.  She couldn't say her name, or much of anything else.

I showed Sally to Janey today, and kind of hoped for a miracle.  I don't do that a lot.  And I didn't get one.  Janey did her not-look looking at her and tossed her aside.  I said "This is Sally!  You used to love Sally!"  No answer, no recognition that she had heard me.  Par for the course.

I don't think much about Janey's first 3 years.  I can't.  I just can't.  If I do, it's too hard.  I tend to remember only the early signs something was wrong, and not the little girl who talked well, when she wanted to.  I think, though, sometimes, about the last visit from the PT who saw Janey in Early Intervention, before they discharged her, saying she no longer needed services.  The PT was great.  She said "Please always stay in touch with me.  Janey is so bright and talks so much!  I can't wait to see how she does at school!"  I never called her.  I never could bring myself to.  I didn't want to see or hear her shock.  It's easier sometimes to pretend that Janey never existed.  It makes acceptance easier, and I do accept Janey as she is now.  Of course, she is the same person she was then, but sometimes, somehow, it's easier to almost pretend she isn't.  I have heard that the notion of changelings might come from autistic kids in the past that regressed, and I can see why.  It's like someone came and took one Janey and replaced her with another, identical looking Janey.

But I won't write about that any more right now.  Even writing about it is too hard.  I put Sally away, where I won't see her for a while.  I would never get rid of her.  She's a keepsake of a time that I do accept isn't coming back.  Sometimes, when I see parents in stores exasperated at their kids for asking for every toy they see, I almost want to tell them the story of Sally, and tell them---buy the toys.  Buy them, because you never know.

Games with Janey

One of the challenges with Janey is finding ways to play with her.  Playing keeps her engaged, and it gives us a chance to work on turn taking, speech, imagination---and most importantly, I want her to have fun!  But like a lot of things I try to do with Janey, it's easier said than done.  Actual, structured games like board games are beyond Janey.  Often I resort to baby type games with her, like patty cake or Here We Go To Boston or even basic peek-a-boo.  But Janey's not a baby, and although she enjoys those games, they don't have a lot of scope for expansion.  Imaginative play doesn't really work.  Janey doesn't get it, and since doing real things like using the phone are not something she can do, pretending to use the phone or pretending to put a baby to bed or so on are not fun for her.  If you don't get what you are pretending, it's hard to pretend.

There's a few things that work.  One is playing catch.  Janey loves to catch and throw balls.  She's no expert, and she misses most of the time when catching, but that doesn't bother her.  She's not that bad at throwing!  I crocheted a ball out of yarn and stuffed it, for safe in the house play, and the other weekend all 5 of us had a very good time tossing it around.  We play with balloons sometimes too, and kick a ball around outside on occasion.  Another favorite of Janey's is one she plays mostly with Freddy---the "I'm going to get you!" game.  He chases her around yelling "I'm going to get you!" and then catches up with her and grabs her shoulder and says "I got you!"  She screams in excitement and then runs off again, turning around now and then to say "I'm going to get you!" to spur Freddy on.

The cats provide us with a lot of entertainment, and I am really pleased that lately Janey seems to notice them a lot more.  She likes gently patting them, and she LOVES the game where I pretend they should be able to talk.  When I tell them to say hi to her, she laughs and laughs.  I think on some level she gets it---cats can't talk, but I'm telling them to talk!  She probably relates to that quite a bit.  And I can get out a little frustration with what I say to the cats "Now, come on, Ash!  You could at least say 'Hi' to Janey!  Be polite and say hi to her!"  The cats never do, so we settle for them giving Janey a high five.  That game can keep her happy for long, long periods, until the cats get fed up and leave.

Last night we had a long round of another of her favorites---Ghost.  This means just putting a blanket over her head or mine and saying we are a ghost.  It actually allows a lot of work on skills.  I can ask Janey if she wants to be the ghost next or if she wants me to, I can give her ideas what to say as a ghost (mostly OOOOOOOO, but we mix it up a little with some "I've come to haunt you!" and so on), we can work on pretend and real when I pretend I really think Janey is a ghost, and then she takes a blanket off and I made a big deal of being relieved it's just my sweet Janey.  We can easily involve other people by going in to scare Freddy or William while they do homework.  And I can introduce words---last night we worked on "double" and "two" by being a double ghost together---the scariest kind of ghost of all, I used to always say when the boys were a double ghost to scare me, back in the day!

As fun as the few games Janey get into can be, it's also frustrating work to play with her.  She never introduces new twists on her own.  She'd be happy if I just played peek-a-boo with her for hours on end.  I have to be very careful to try to vary what I say during games, or it becomes a fixed piece of echolalia forever associated with that game, and she gets upset if I don't say the right thing.  And perhaps the hardest part is that Janey rarely seeks out playing.  She'd  probably frankly be happier if I just mostly left her alone to watch a video or bite on a biteable toy.  It can start to feel like a one-man show playing with her after a short time.  But I do have to believe it's valuable time.  Even if she learns nothing from playing, if she's enjoying herself and enjoying my company for a few minutes, that's a plus.  That's what we want our kids to have as part of their childhood---happy interactions with their parents stored somewhere in the memory banks.  I hope Janey's brain has a place with that kind of memory.

Pets and autism (or cats and autism, anyway!)

I've seen some articles lately talking about a study on the benefits of pets for children with autism (here) An interesting part of the article was that the benefits weren't seen if the pets were around from the time the child was born, only if the family got a pet around when the child was 5. Now there's a helpful idea---when you have a baby, on the off chance the baby might become autistic, hold off getting a pet until they are 5, to reap maximum benefits. I joke a little, of course, but it's like so many studies and articles I read. They might be interesting, but they are of little practical use in Janey's life. I wish the money spend on this kind of studies could be better used.

How do the cats affect Janey? Not much, I guess because we foolishly had them since she was born. But seriously, it's like the cats most times are in a parallel universe. Janey pays them no mind at all. She doesn't generally touch them, look at them or play with them. Even if they run right into her, she just brushes them off. Freddy has been working on this, trying to get her to pat them, and that has shown just a little bit of success. The other day, we were shocked when Janey tried to pick up one of them, Vernon, our most standoffish cat. He didn't let her, slipping out of her attempt, and it was interesting that was the cat she chose. Maybe it was because he doesn't try to get her attention (not that any of them do, too much)

I've written before about how Janey used to love dogs, then became terrified of them. Now she seems a little more okay with them, and although it's never going to happen, I wonder how she would do with a therapy type dog, a dog that loved her and showed her a lot of attention. I think it would be frustrating for the dog, but I could be wrong.

I've thought a bit about horse riding therapy, but it's expensive and also not in the city. I wonder how Janey would do with that. Horses might be big enough so they almost seem more like a form of transportation or a ride to her than an animal, which could be good but kind of misses the point.

I've heard people say that all cats are autistic, but if you really know cats, that's far from the truth. The cats in many ways are more socially aware than Janey is. They follow my non-verbal language carefully. They know as if by psychic means if I am thinking about feeding them, and respond by lots of noise and getting under my feet and pointed looks to keep me going toward the food. They watch each other closely, and they play-fight, snuggle each other, have a leader and followers, they act differently when strangers are in the house---they are very social in a lot of ways. Janey does some of those things some of the time, but none as consistently as they do.

My conclusion? I wouldn't rush out and get pets for your autistic child in hopes of a social benefit. But I wouldn't NOT get them either. I think this is an area where autistic kids are as different in their attitudes toward animals as non-autistic kids are.

Assorted Janey Stories

1. Yesterday when arriving at school, Janey went into the office, went up to an old friend of mine that was working there and said "I want coffee", pointing to her cup of joe. I was sheepishly forced to explain that yes, indeed, Janey has a cup now and then. But just on weekends! It's not like she has a problem or anything!

2. A few afternoons ago, Janey replayed her Dennis the Menace routine. Literally within 15 minutes, she dumped a whole canister of Strawberry Nestle Quik on the kitchen floor, poured a bottle of bubble stuff on said floor and then moved on to the living room and opened up her No More Tears Tangle Stray and poured it over the remotes. She took advantage of my cleaning up each spill to move on to the next. Amazing.

3. Janey continues her dysfunctional relationship with The Care Bears Movie. She wants to watch it all the time, despite the fact that the scary parts (and it has more scary parts than you'd think a young kids' movie would) terrify her. She had a flashback in the car to a line that says "The boat is moving by itself!" and worked herself into tears, but couldn't stop obsessing over watching the movie once again when we got home.

4. One of her new favorite songs is "Better Than This" sung by Brad Paisley. She sung out her favorite line loud and clear at the grocery store the other day.."If a busload of women, really good looking women, should suddenly pull in here..." followed by the lyric "Hundred Gallon Keg of Beer!" Tony was glad no-one much was around to hear right then.

5. Janey is still loving the "Tell the cats to say hi to Janey" game. She points to them all the time and says "Say hi to Janey! Say Good Morning to Janey!" She loves feeling superior to them.

6. An ABA specialist at the school (not Janey's, but they all know her!) told me yesterday that Janey saw her across a room and ran over and gave her a big hug, and it made her day. We talked about how if Janey does that, it means a lot, as she does nothing just to be polite. If she hugs you, she means it!

7. Janey always calls her ABA specialist "Mr. McKen" His name is Ken, but both her classroom teachers have "Mc" at the start of their names, so Janey I guess figures that's a prefix that means "teacher".

8. Janey is awake now, so I better stop this list, unless I want to see what she might like to spill on the floor next.

Social skills lessons with the cats

I hit on something fun the other day with the cats and Janey. Generally, Janey acts like the cats don't exist. It's kind of like I picture the regular world and the magical Harry Potter world interacting. They share the same space, but they just don't usually see each other. The cats can get right on Janey's lap, and she acts like it's not happening. And if you know cats, you know that they are not very hurt by this, and in fact like her a lot for her indifference. But sometimes I wish she liked them. One of them, Gusta (short for Augusta, which was actually one of the names we were thinking of for Janey) was sitting around recently looking at Janey. I said to Gusta "Say Hi to Janey, Gusta! HI!, Gusta! What do you say to Janey? HI, GUSTA!" It's the kind of thing we say to Janey, to try to get her to say hi. Of course, Gusta wasn't buying, but Janey actually got it and laughed and laughed. Then she started saying it too "Hi, Gusta! HI! Say HI, Gusta" and added on "Look at me and say hi!" Since then, she wants to play the game over and over. I think it appeals to her that the cats are far worse at it than her. I'm not sure she gets that the cats are in fact SO bad at it that no amount of coaching will EVER make them say hi, but that doesn't matter. It takes the focus off her while giving her some practice, and the cats do interesting things that stuffed animals in that role wouldn't do, like sometimes jump down and go away while I call after them "Gusta! That wasn't very polite! You could have at least given Janey a High Five!" which got her laughing again. It's probably good for me too, as I struggle not to ever say things like that to Janey, but the rules are different for cats, who are not being affected in terms of their feelings or their long-term development, which, to make a run-on sentence, is one of the reasons I love cats. And we need silly, fun times with Janey. Lately she is really wearing me out. She's still "testing limits", which is the polite term for being extra naughty. I think it's a step forward in the very long view, but it added to often not getting good sleep and just the general life with a disabled child is enough to send me into long naps during my precious daytime alone time. So I have to grab fun with her when I can. And hey, maybe one day the cats WILL say hi back. Or at least master the high five.

Craziness thrust upon me

Thinking back on my life, I can see a theme. I don't like to stand out, to shake the boat, to do things that aren't what is expected of me. I don't think anyone made me this way. I think it's just how I'm wired. I don't like to be the center of attention. I hate the thought of someone saying about me "Wow, I can't believe she did that!" I don't want to disappoint people. I was thinking about the summer of my sophomore year at college. I had a summer job I really, really liked, as a newspaper clipper, reading newspapers and marking articles that clients wanted to get---like if the newspaper mentioned Reader's Digest, you marked it with a code, and it got cut out and sent to Reader's Digest. It crossed my mind that summer that I wished I could take a few years off from college and just work that job. College wasn't especially inspiring to me, and I liked the idea of working and making money. But I never once thought about it seriously. It just didn't occur to me I could actually do that---that I could decide to take a different path, one that some people might disapprove of.

This weekend, I had a bit of a revelation in my mind. Although I've spent my whole life avoiding standing out, looking crazy, being unexpected, craziness has been thrust upon me. Life with Janey is crazy. If I go into a store with her, people are going to look at us, because she will be making odd noises, jumping up and down, acting in ways you don't expect a normal looking 7 year old girl to act. I'm not going to follow the expected path with her. We won't be preparing for college, or anticipating her dating. We will be hoping she's someday completely toilet trained, and that she can someday be alone in a room without disaster. Whenever I take her to a new doctor, or a new dentist, or a new anything, I am going to have to give the short speech I give "She is autistic and won't understand a lot of what you are saying, or answer what you ask". Right away, I'm outside the norm. Crazy isn't the completely right word, but it's what I am picking here. I've had the crazy life thrust upon me.

And, it occured to me, that's a little freeing. It struck me I can PICK to be crazy, in cases where that will make me happy, or us as a family happy. We are already not following the groove, so we can do things we want to do without much more standing out. For example, although reasonable people might all agree one cat is fine, or at the most two, if we choose, as we have, to keep all four of our kittens that the stray we took in had, well, they make us extremely happy. It's craziness, but I have chosen it. If craziness is going to be thrust upon me, and I don't get to choose it, then I have decided that means that I can also pick to be a little crazy sometimes, if it doesn't hurt anyone and makes our family happy. We are never going to be your typical family any more. So we might as well make it an enjoyable ride along the way.

Summer

The last week has been fairly tranquil. Janey is calm most of the time. I'm not asking much of her---I'm getting into my default hot weather mode, which is going no-place and doing nothing. I HATE hot weather and it's been a hot summer. Janey has been watching more TV than I'd like, but she likes it and is really reacting to it---not just sitting there staring at it, but laughing and playing close attention to her favorite parts. We are working on workbook pages and papers the school sent home a lot. Janey will try if I have M&Ms. She is getting pretty good at tracing paths, like when the paper has a little maze to follow (but not really a maze, as it's all the right way). I am trying with letters, but I don't think she gets them at all. Numbers are a little more promising. Shapes still a struggle. Her best area is naming things, like when there are pictures on a page. IF she knows she might get a reward, she'll name all kinds of things. She often just uses the name of the last thing I showed her, though, if she's not really trying---like I'll show her a pig and name it, and the next thing is a table or something and she'll say pig. It's frustrating. It makes me feel like I'm trying to get her to do a party trick she really doesn't get. Her talking has lessened again lately. It's mostly all the old mold---"I want...." She fits everything into that mold, creating sentences like "I want turn off the light" "I want I will get you that"---meaning she wants me to turn off the light or she wants me to say "I will get you that". Sometimes she emphasizes the "I" part with pointing to herself.

I think she does a constant monitoring of the areas she wants to explore. If I leave the fridge un-bungee-corded for ONE SECOND, she is there taking things out. She checked the door to the hall many times an hour, as she does the bathroom door---she very much wants to start a bath for herself with her clothes on.

We had a very delightful day last week. I had everything locked, and I knew she couldn't get away, but I looked away and couldn't find her when I looked back. I checked everyplace (and we have a sadly small apartment) and didn't see her. I was starting to panic, although there was literally no-place she could have gone. I looked again and found her where I hadn't looked the first time---in the cat litter box. Like it was a sandbox. I admit I screamed at her. I think it's the first time I all out screamed at her. I am not a screamer. But I was so worried at not seeing her the first time, and so sickened by her thinking that was a place to play, and so annoyed as I had just given her a bath. She was very upset by my screaming. I was surprised it affected her so. She looked so sad. I gave her another bath, of course, the bath of a lifetime. During the bath I asked her more times than I needed to to tell her she was sorry, which she did. Afterwards she wanted me to hold her for a long time. I talked to her about not going in the kitty litter box, how we NEVER EVER EVER go in there, etc. She hasn't been back. I hate screaming like that. But I guess it was a natural reaction and probably did make an impression.

Janey's cats

These cats have been Janey's favorite toys for a long time. Today we made some doll clothes for them, with my usual slopping workmanship. It was a lot of fun for me---like so many things I do with Janey, I am not sure if she really cared less. But she loves having her picture taken, so she looked happy for the pictures anyway. The first picture shows her in her manic sort of laughing face we see a lot. She looks happy, but she is not really engaged, more just laughing to herself at her own inner jokes. She was singing a made up Scooby Do song (another thing like Sonic she has never actually seen, but she likes the sound of). The second picture shows her a lot more engaged, and actually looking at me, which is always nice. It's the elusive state I like to see but have a hard time getting from her---calm and engaged, not crying or manic or zoning out.

No fun with stickers

I tried hard today to make a fun activity with Janey. I have lots of stickers, all different cool kinds, some that I have gotten at craft stores as parts of big grab bags, with special textures and so on. I took a big book, spiral bound, that I bought for us to color in, and tried playing stickers with Janey. I wasn't directing her---I let her do whatever she wanted with the stickers---but I put some in the book and talked about them. I thought it would be a vocabulary time and a sensory time and all kinds of good things. But like so many times with Janey, it turned instead into a crying time. I don't know why. It seems like she doesn't like to be focused on---she knew I was there to play with her, and that is too intrusive I guess. It's one of those days I feel at such a loss.

Last night seemed better. I was thinking how some parts about Janey are so easy. She loves good food. She was thrilled last night to eat lots of raw carrots and cucumbers, and homemade chicken soup. She is in no way a picky eager. She is also, knock on wood, a good sleeper. She is ready to sleep about 7:45 each night and sleeps until about 7:45 each morning. Some nights she does wake up, but usually it's not that hard to get her back down. She was doing some good talking last night too. She said "I will give Danny (the cat) a carrot". We said cats didn't like carrots much, and she said "It is NOT silly to give Danny a carrot!" although we hadn't used that word.

I feel so alone much of the time. In a world that's supposed to be filled with autistic kids, I feel like the only parent of one on earth lots of times.

Some great talking

Janey was talking up a storm tonight. It's not really conversation, but it's so fun to hear. She was talking about Tommy, the cat, and patting him. She said "I love Tommy. He's not a bad cat. I love Tommy most in the whole wide word. He is purple and green and blue, and he has more ears" It wasn't all at once like that, but along those lines. It made me so happy just to hear her talking a lot. All morning she kept coming up to me and saying "Hi, Mama!" and then this afternoon she said "Good morning, Mama!", not the right time but still so nice. She was extra happy after school again. I am feeling more upbeat than some days.