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

The Sun Did Not Shine

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

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

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

Janey watching TV

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

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

Letting Go of Janey's Hand

The title of this post sounds kind of metaphorical, but it's actually not.  I'm talking literally about deciding when it's safe to let go of Janey's hand.

Until a few months ago, I held Janey's hand ANY time we weren't in a fenced in outside area.  This includes as soon as she got out of the car in our driveway (we live in a very busy street) and in all parking lots, stores, sidewalks and so on.  She has been known to bolt, and I live in constant fear of her getting lost or running away.  She usually didn't protest the hand holding---it's just the way it was.  But suddenly, around November, she started letting go of my hand in certain situations.  The main one is when she gets out of the car at school.  She seems very, very eager to walk to the school from the car by herself.  And so I'm trying, very hard, to let that happen...

It's hard for me.  I probably held the boys' hands far beyond when most mothers did.  They never minded much, but both of them had naturally less adventurous personalities than Janey does, and less active.  She has always pushed things a little further than they did, and I think this is the case even taking away her autism from the equation.  So my impulse would be to hold her hand forever, into adulthood, for the rest of her life.  And maybe that wouldn't be bad, but she is showing me that isn't what she wants.  She is 9 years old, and is starting to really look like a big girl.  So I am trying, very very hard, to let go when I can.

We park various places, but Janey seems to know the way to school from all of them.  I do tell her to wait as I lock the car and get ready to walk.  Then I tell her she can go, and she goes---ahead of me, because I am slow and not as sure-footed as her.  She walks swiftly and with purpose.  When we get to the crosswalk by her school, I call to her again to stop, and she does---looking back at me with annoyance at my pokey nature.  I always wait for the "walk" signal, and always talk to her about it, trying to get her to notice it and understand it.  And we hold hands crossing the street---I'll do that until I can't any longer.  But then I let go again, and let her walk into the school by herself.  Strangely, once we are inside, she again wants to hold my hand as we walk to her classroom, which I am happy to do.

In thinking about this, I realize that Janey has come a long way in this area.  She doesn't bolt any more, or very rarely does, or I wouldn't even think of letting her walk on her own.  Although I always figured she knew where the school was, in the past if I tried to get her to lead me there, she would just stand around and look blank.  Now she seems to have purpose, and to understand navigation a bit more.  And she is showing the start of a pre-teen-like annoyance with my overprotective nature.

I guess there is a little metaphor here.  I know this kind of issue will keep coming up and coming up.  I need to let Janey do what she CAN do on her own.  I need a way to figure out what she can do that she doesn't WANT to do, and try harder to make her do those things, and I need to look hard at my own behavior and what I just do for her because it's easier.  I need to try, little by little, to let go of her hand more often.  But it's complicated.  When you have a child you are fairly sure will never live on her own, what are you building independence skills for?  I know it's good for her to learn these skills, but somehow, it doesn't seem as purpose-driven as for other kids.  So I have to balance, to think hard.  Learning to walk without holding my hand is not going to lead to her going to the corner store by herself, probably ever.  Do I give up that little bit of safety to let her learn a skill that isn't going to progress on?  I just don't now.  Those are the questions I know I will be asking for years to come.

Warning! No Silver Lining!

If you like to read heartwarming accounts, or tales of positive action and good results and special moments, you might want to skip this entry.  I'm sure I'll get back to that, but for now, I haven't got that in me.

I wrote optimistically on Friday about trying a new way to deal with Janey's screaming.  I felt enthused, and we saw some early good results from ignoring the screaming.  I woke Saturday determined to work on that method.  However, Janey didn't have the same determination.

We all can ignore screaming.  But Janey doesn't like to be ignored, and so as soon as she figured out what game we were playing, she upped her own game a notch.  We can ignore screaming, but it's a lot harder to ignore screaming when it's combined with grabbing various objects and flinging them around violently, or with biting her own arm so hard it leaves marks, or with smashing into her brother as hard as she can, repeatedly, or with taking any liquid that is available and spilling it on the ground.  Or even just sticking to the basic screaming, but keeping it up at incredibly loud volumes for an hour, to the point that one gets quite concerned that anyone hearing her would assume she's being horribly injured.  Or when, if you attempt to take her in the car to diffuse things, she rolls down the windows, throws things out the windows, thrashes around so much it's impossible to drive, hits anyone in the back seat with her and makes so much noise that passerbys are startled.  Or turns off the TV or computer someone is trying to watch, over and over and over and over.  Or strips off her clothes literally hundreds of times a day.  That was yesterday.

There were little, tiny moments in between the horrible moments when Janey appeared perfectly calm and happy, when she sang or played outside or was sweet to us.  But it's hard to relax and enjoy that when any hug can suddenly turn into fury, when from one second to the next happy talk can become deranged sounding screaming.

When Janey is like this, it's not living.  It's surviving.  We are shell-shocked.  We look at each other and just wonder how we will make it to night.  And when we slip and let ourselves think about the future---there doesn't feel like a future.  There is no end in sight, ever.  There is only Janey getting bigger, getting to the point where she will be stronger and we will be weaker.

I'm not going to put a silver lining here.  I am going to say that it isn't always like this.  If you read back in this blog, sometimes there are weeks or even months when Janey is delightful, wonderful, when the fact that she is autistic and intellectually disabled is not a big deal, because she is simply Janey and we are delighting in the Janey she is.  I have hope that she will cycle back to that.  That is how we do it, when people ask us how we do it.  We hope.

The shopping trip that wasn't

Today, Tony took Janey with him to got to Trader Joe's, with William and my brother-in-law. We all love Trader Joe's, as has Janey in the past. William was excited to get some of his favorite low priced frozen foods, Tony was excited to get the great store brand Swiss Cheese they have, and Joe (my brother-in-law) was excited to get some of their Sicilian wine. And all was jolly until they were about 10 minutes from the store. Janey started saying she wanted to go home, but it was a low level grumble. Then, when they got there and got out, she started The Crying. The crying that has, we now realize, reached a new level of intensity the last few days. Maybe it's an 8 year old thing. She screamed and crying so loudly, so intensely, that Tony experienced my Sears disaster in parking lot form. People staring, EVERYONE in earshot staring. It's that kind of cry. And it was impossible for them to go in the store. Tony offered to stay out with Janey, but Joe was too shaken and William doesn't have his own debit card to pay. And so they left.

William was very, very, very angry about this. I can't totally blame him. It's not the first time his life has been changed by Janey, of course, but lately, it's not just hard to do things if she acts that way, it's impossible. The probably 5 minutes total I was in the Sears were such hell that a whole shopping trip like that would be whatever is way beyond hell. For us, and for everyone else in the store. Janey might very well hurt herself, as she sometimes starts banging her head or biting herself when the fury and sadness completely overcomes her. And so we can't power through this.

And now she is home, fairly happy. And we are at a bit of a loss. One of the main ways I got a little respite was Tony taking Janey grocery shopping. She likes, or liked, to grocery shop. If this new behavior lasts, I can see us much more confined to home. And of course I worry---if she does this at school, I can't imagine how it will work out. I feel worried sometimes we are headed for a new stage of Janey. Or maybe I shouldn't say worried. Often, very tough behavior with her comes before a step ahead, and indeed, she has been saying some good phrases lately, and the toilet training progress is, knock on wood, great. I have no answers, really.