"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.

Jealousy, Anger, Boredom, Fear....

In my own mind, there is a list of acceptable emotions to have as a parent, especially the parent of a child with autism. Happiness, pride, love, determination, hope, curiosity, amusement, empathy---you'll notice the list is full of positive or encouraging feelings. But there's also a list of feelings I classify as, if not forbidden, at least not to be spoken of much. I'm going to try hard here to be honest about some of those.


Jealousy


In my ideal version of myself, I'm never jealous of other parents or kids. I delight in what Janey can do, and never think about what other kids are doing. In reality, sometimes I am so jealous it's hard to describe. I see other girls her age on Facebook, doing all the regular 13 year old girl things, and I can barely stand it. I look at other mother/daughter relationships, with all their ups and down, and I long for that kind of relationship in my own life. Every child with autism that functions at a higher level than Janey can make the green-eyed monster come out in me. The jealousy isn't all the time, but when it shows up, it's powerful.


Anger


We got a new couch recently. For the few of you that have seen our furniture, you know it was highly, highly overdue. It's nothing fancy, but I had this dream of it looking fairly good for maybe, say, a month. This Sunday, as Tony drove Freddy back to school and I stayed with Janey, against my better judgement, I went to the bathroom while Janey was watching TV. In the few minutes that took, Janey got a bottle of salad dressing out of the refrigarator and, for reasons known only to herself, poured the whole bottle on the new couch. I don't get angry that easily, but I made an exception there. I was furious. Life with Janey presents a lot of moments like the Couch Incident. In some ways, it makes no sense to be angry at Janey. It does no good, I don't think she usually gets why I'm angry, it doesn't do anything but get us both worked up. But having a child who does inexplicable and destructive things on a fairly regular basis---yes, I get angry sometimes.


Boredom


For some reason, this feels like one of the most taboo emotions to have when dealing with your autistic child. I feel like I'm supposed to consider every moment an exciting learning opportunity, a chance to teach and help. However, the truth is, sometimes life with Janey can get boring. Her favorite thing to do with me is what she calls “Snuggle on Mama's bed”. In reality, it's her bed, and it's not usually really snuggling, it's lying there next to each other. My role in this game is to sing little songs and recite nursery rhymes and otherwise carry on a monologue. Sometimes this time feels wonderful, a time of connection between us. Other times, though, I am just plain bored of it. Janey doesn't want me to sing or recite or talk about anything new. She is open to new music in the car, but not when we are snuggling and I'm singing. She doesn't want to talk herself, or be asked questions, or listen to any books except a few nursery rhyme ones and occasionally “Go Dog Go”. I'd say we spend a couple hours a day in this mode. And it gets boring. Very, very boring, at times.


Fear


Recently, there's been attention in the news to the hideously high rate of abuse of those with special needs. I can't read through these articles, but I've read enough. When I think about that kind of thing...well, often I just can't. The fear would overwhelm me. And in the background, there is a fear that never ever goes away, the fear of what will happen to Janey when Tony and I are gone. When I think about her in any kind of situation where she is scared or confused or being hurt or not cared for---the fear is horrible. Add to that the fear that was planted, planted deep, when she lived with a burst appendix for three days without us knowing, the fear of the harm that can come from her lack of ability to communicate well...the fear is always, always there.



There you have it---the emotions that often get left out of what is openly discussed when talking about this special needs parenting gig. It's not an easy job. It's the job I'm committed to for life, and my love of Janey is my pay. But like any job, no matter how well paid, there are days you just want to gripe, to speak openly about the sometimes tough work conditions with others on the work site. Thanks for listening.

A great trip with Janey, but missing her brothers!

On Saturday, we headed out to upstate New York to take Freddy to college.  He is going to Skidmore College in Saratoga Springs.  I must say that overall, in terms of Janey, it was a hugely successful trip.  She is a great traveler!  We kept looking for wood to knock on over and over, as we commented on how well she was doing.  I think if we took every minute of screaming and tantruming from the whole over 2 day trip, it wouldn't add up to more than half an hour---which is incredibly good.

Of course, the trip was hard on me anyway!  I had a hard time saying goodbye to Freddy.  He's an incredible kid, and it will feel very strange not having either him or his equally incredible brother William at home.  For now, it's just the three of us---Tony, Janey and me.  But as I said to Tony at one point, I'm feeling a little more optimistic about the future after seeing how well Janey did on the road.

Janey digging in at the Chinese buffet

Part of what made it work is that we kept things very low key.  Janey loves just being in the car, driving around, and Tony and I do too.  We rented a big SUV for the trip, which we loved!  Our car is an old Saturn with almost no modern features, not even automatic windows or a consistently working car radio, but the Ford Explorer we rented had everything.  We kept joking it was like we were suddenly in the world of the future.  I especially loved the Sirius Radio.  I wanted to explore all the stations, but Janey has a routine of listening to certain music in the car, mix disks that Tony has compiled, and to keep her happy, when she asked for "Disk?  Disk, please!  Disk"  we put one of hers on.  We also didn't try to do anything touristy besides driving around and looking at things.  We didn't try eating out except for quick places like fast food or a Chinese buffet on the way home, and we didn't visit local landmarks, except by driving by them.

The fancy lobby of the hotel.  The rooms were NOT as fancy!

I was very worried about the hotel.  It's racing season in Saratoga Springs, so all the hotels there were either fully booked or exceedingly expensive, so we stayed in a neighboring town in the hotel that made my Priceline offer.  It turned out to be a very old, once grand but no longer hotel.  I read reviews of it that mentioned the thin walls and the complaints about noise, and I could picture Janey's screaming getting us kicked out.  However, even with internet that didn't work at all the first night, Janey didn't scream!  When she got a little loud, I said in an exaggerated whisper "We have to be very quiet at hotel houses.  Shhhhh!"  Janey found that hysterical and started walking around imitating me, but in a whisper, which worked well for keeping her voice down!

One of the best parts of the trip was swimming.  The hotel had a lovely pool, and we used it mid-day, and had the whole pool completely to ourselves for over an hour.  Janey loved being in the water!  We also went into the hot tub next to the pool with her for a little bit, and that was amazing.  For the 10 or so minutes we were in there, she was completely quiet and calm.  We all three just sat there, enjoying the heat.  I can't remember, ever ever ever, having a time like that with the three of us.  Tony and I kept looking at each other in wonder.

Tony waving goodbye to Janey on her first day of 5th grade

We got back Monday night, and Tuesday morning early (6:30!) Janey got on the bus for the first day of school.  Evidently, things went well.  The bus was an hour late getting home, due to first day glitches and the hot weather, but Janey took it in stride and seemed perfectly happy getting off.

So now, we start the next phase of our lives, what will probably be the phase until we are gone, the three person family.  Of course, the boys will be home for vacations and summers, and I can't wait.  But it's never going to be quite the same.  I was surprised by the depth of my emotions at having both boys gone.  I kept thinking about how it seems only a few days ago they were toddlers, and I would think "Can't they ever go a second without needing me?"  Now they are adults.  It goes far too fast.  Even with Janey, where time sometimes seems to stand still.  She is almost as tall as I am.  None of the clothes I had set aside for the first day of 5th grade fit her.  We share shoes.  She is growing up too.  The future comes rushing at us relentlessly.  Best of luck, my college junior and my college freshman and my 5th grader.  I love you three.

The Slightest Hint of Negative Emotion on TV

I'll have to admit I'd love it if Janey would watch TV passively.  At the end of a long day, it would be a dream to have her just sit there glued to the screen, watching whatever came along and giving us all a little break.  If that makes me a horrible mother, so be it.  But it never happens.  Janey's TV watching is an interactive, restless and volatile experience.  The videos are stopped and started, the shows turned off and changed and turned back on.  Almost always, at some point during a video or show, Janey screams and angrily turns everything off.  For a while, she felt the need to smash the TV while doing so, but after long enough of us just unplugging everything when she did this, she now turns it off more delicately.  Then, due to today's complicated mix of Netflix and Amazon Prime and so on, to watch again, she usually needs some help (partly because I had to install passwords on Amazon Prime after she bought several expensive seasons of shows on her own).  Therefore, lately when she's watching TV, I watch with her, knitting or sneaking in a little reading between putting shows back on.   This has let me figure out what seems to trigger the need to freak out and turn off shows.


Basically, Janey hates characters on a show to demonstrate any negative emotions.  Strangely, this is more so the case for subtle negative emotions.  If the characters are very plain in what is making them upset or mean or angry, it's usually okay---she watches "Courage the Cowardly Dog" happily often, and there is some wild and strange emotion there, but it's very, very obvious.  She can happily view the bizarre enchanted evil book in "The Care Bears Movie",  but she loses it at the merest hint of annoyance of Little Bear's antics shown by his parents.

Janey's favorite shows are usually very mild ones.  Right now, she most often is watching "Little Bear", "Kipper" and "Oswald".  All of them were originally on Nickelodeon for preschools, and trust me, they don't feature a lot of fight scenes or confrontations.  But Janey picks up on anything less than perfect harmony, and seems horribly upset by it.  For example, in one episode, Kipper's friend Tiger is fishing.  He is not catching anything, and at one point he says to Kipper "Let me tell you something.  Fishing is very, very boring"  Tiger is a bit of a malcontent, and he says this in a slightly annoyed voice.  Janey freaks out.  She has to turn off the show every time at that point.  Or Oswald's friend, the penguin Henry, another slightly grouchy character, turns down Oswald's offer to go to the beach, saying he doesn't like the water.  His very minorly prickly tone causes Janey to start crying and turn off the show immediately.

Janey's discomfort with such slight shows of negative emotion seems to go against a lot of things people think about autism.  Isn't she supposed to be unaware of subtle emotions?  And in fact, stronger emotions often seem to not affect her a bit.  Freddy and I watch a lot of "Star Trek Voyager", and there are some fairly dramatic scenes in that show, but Janey never seems to mind.  My theory is that Janey feels scared when she doesn't know quite why people are acting the way they are.  If it's very obvious, that's okay---she can classify that.  But if the scene is more subtle, and her hugely sensitive ears pick
up a tone indicating something is happening she can't quite put her finger on, that is scary.

Lately I have tried to talk to Janey about the scenes that upset her.  Yesterday, when watching Little Bear, the mother bear came home after Little Bear and his friends had messed up the house.  They cleaned up most of it before she got in, but she realized things were out of place and said something like "Little Bear, why is there a croquet ball in my knitting basket?"  Her tone was enough to get the TV shut off.  I said "Mama Bear was a little upset there, wasn't she?  She figured out that Little Bear had been a little silly while she was gone.  But she understands that bears sometimes get a little silly.  She isn't that angry"  Janey gave me one of her deep, intense looks, one of those looks I love that seem to say "Hey, you hit on something there.  You got me"  We put the show back on and watched the rest together.

Realizing how sensitive Janey is to even mild TV shows makes me realize how the world must often feel to her.  It's a confusing, overwhelming place, and often, just shutting it out must feel like the best strategy.  I can see why she screams and lashes out when it gets overwhelming.  It must be easier to put our her own strong emotions to cover up all those swirling confusion messages out there.  I hope I can somehow help Janey a little to be able to face this emotionally complex world, but it's not going to be that easy.

Sampler Week

I've been trying to sum up in my mind how the first week of summertime school has been going, and I realized there is really no way to categorize it.  It's been a huge mix.  The best was Tuesday morning, Janey's second day of school.  After Monday seeing her try to drag me in the opposite direction of the school to avoid going, Tuesday was the opposite---she was dragging me TOWARD the school, as happy as she could be, singing and skipped and thrilled to be going back.  That did my heart good to see.  I was feeling on a high, but when I went to get her that afternoon, I could see from the looks on people's faces the  day had had some issues.  The aide told me Janey had bitten her own arm a few times.  The scenario was familiar to me---Janey wanted to go for a walk, she couldn't go that very second and so she got mad and bit herself.  It was the first time they'd seen her do that, and it's an upsetting thing to see.  I reassured them that I know it happens, and her ABA specialist has gone over the plan for handling it, but it still doesn't make it easier for them, or for Janey.  That afternoon at home, she was mostly happy, but at one point, extremely suddenly, she started screaming and crying as hard as I've ever seen her do, and believe me you I've seen her cry pretty hard.  It was literally from one second to the next.  I managed to get her to stop by singing and talking in a low voice, and within 10 minutes she was happy again.  That is not Janey's typical pattern.

Yesterday, she was back to trying to drag me away from the school, but not with a lot of true effort.  She had done a little biting herself again, but there was less of the stunned look from the staff, since they'd had their baptism in fire.  I think when you see the charming, happy, delightful Janey, it's hard to picture what the depths of the tough times are like, and it's always a shock to people the first time they see it.

The sudden bursts of anger or sadness or what looks like despair are a new thing.  Usually, Janey'd go on about 2 week cycles of happy or sad.  You'd know if she was happy, she was fairly likely to stay happy, and the same with sad.  I am guessing this is early puberty related.  The up side is there have also been wonderful times of true connectedness and happiness.  A few days ago, Janey went over to Tony, hugged him, and said "I love you!"  That is the first time she's ever said that to him.  To say it meant a lot to him is putting it extremely mildly.  And she does love him.  She was waiting for him to get home last night, and I felt like it was one of the first times ever she'd really been waiting for him---that she understood he'd be home soon and was anticipating it.  I said at one point "Daddy will be home any minute" and she said in a high pitched thrilled voice---"Any MINUTE?" and went over to the window to watch for him.  It was great to see.

So it's been a week of samples of all kinds of Janey behavior.  She is keeping us on her toys.  I could hire her out to give people a quick introduction to lower functioning autism---within a day, she'd show them a huge variety of the behaviors they need to learn about.  It's tiring.  But somehow, it does feel a little like progress.

Boxing it all up

The last few days have felt pretty tough.  Janey has been in an odd mood.  She is still talking much better than usual, but she's very, very emotional and volatile.  She is reminding me of a teenager, and I was remembering that both boys went through a stage a little like that when they were 8, and a friend had told me all her 4 kids did.  We had a theory it's when the teenage hormones start to kick in, to get the whole process started, and that makes sense.  She will be watching TV, happy as a clam, and suddenly something hits her and she is screaming or angry, and running over to me with her favorite phrase "Snuggle on Mama's bed!".  She has also been getting a little hitty.  Just flinging her arms around and a little more often than chance would dictate flinging them onto me.  I could deal with all this, but I also got some test results from the doctor indicating I better take better care of myself.  Nothing terrible, but warnings.  Among other things, my thyroid apparently is once again on strike and I probably need a higher dose of replacement.  That in the best of times can leave me drained and exhausted.

So yesterday it felt like too much.  I tried hard to absorb it all, because what else can I do?  But when driving to pick up Janey, my eyes did not get the message the rest of my mind was shouting at them, and I started crying.  Which is not good to do while driving in the city in the dark.  It was funny---I didn't feel that emotional, but my eyes did.

Now it's the middle of the night, and I woke from a dream or thought or something.  I was picturing the new challenges coming in, and me packing them up in boxes---reasoning them out, figuring out how to deal with them somehow, and putting them in boxes to store.  There was a lot to box, and some of it came in odd sizes or required special care like lots of bubble wrap (you can tell I box a lot of books and other things to mail).  Some of the thoughts were pushing at the edges of the boxes, not wanting to stay under control, but I didn't have a choice.  I had to get everything put away.

That is how it feels a lot of times.  I don't have the luxury of letting all the thoughts and challenges sit around.  If I did that, there would not be room to move around, to do the daily things that need doing, to keep Janey happy, to drive her and get her to sleep and fend off her flailing arms and interpret the world for her.

And sometimes I worry I'm running out of boxes.

The Little Mermaid and Journey to Joke-a-Lot

Janey has recently gotten heavily into two full length movies---The Little Mermaid and Care Bears: Journey to Joke-A-Lot. She wants to watch them, one after another, all day long. We of course insist on some annoying other activities in between, and school and sleep and eating and so on get in the way, but I must say she watches them plenty. And like anything show or video or book or song she gets heavily into, she memorizes them. She is always coming up with scraps of dialogue or snippets of song. One of her teachers surprised her by knowing that "Poor Unfortunate Souls" was a song from The Little Mermaid. I'm sure people are sometimes confused, though, by her saying "I've never seen a human this close before!" or "He said the S word!" (which in the Care Bear movie, is "serious"---you can't say serious in Joke-a-Lot.

I try often to figure out why Janey (and other kids with autism) get so consumed by videos. Other kids like videos, but I don't think most kids completely live in them like Janey or her compadres do. I know a lot of it is predictability. She knows what will be said next---it's not like the real world where people can say or do anything out of the blue. It's also music, for Janey---I think she'd love to live in a world of real life musicals, where people burst into song and dance numbers occasionally. But I also think the movies and videos give her a way to understand emotions, and to prepare for them. There are parts of both movies that scare her. When those parts are about to happen, she usually runs over to me and says "Snuggle on Mama's bed!" I've figured out she doesn't really care if I don't get on the bed and snuggle with her. It's just a way of telling me that she is upset. And it's not, in these cases, truly upset. It's an anticipation of being scared, a very controllable one. She seems to be working on a way to deal with the scared emotions.

I try to use the videos to draw her into our regular world. Yesterday at a thrift store I found a Little Mermaid shirt for her. I showed it to her and she was so excited. She often doesn't notice what she is wearing much, but this morning she asked for the shirt (I hadn't washed it yet, but I'm getting right on that!) Other girls like The Little Mermaid (although she's a little out of date with it), so I am thinking it could be a Halloween costume, or a source of toys. It's something she can share with the larger world.

And, if I might be totally frank, it keeps her happy. It can be near impossible to keep Janey happy all day. She is not interested in toys, most of the time, she will listen to me read to her only about a book a day, she doesn't entertain herself at all, except in odd ways like biting on things. So having her watch a movie is a way to keep her mind from completely being off-line in her own world, and it allows us a few minutes to regroup, do some housework, spend a little time with the boys, while still keeping Janey in view. And although I started motherhood as the kind of parent determined TV would play a very small role in my childrens' lives---there would not be time with all our creative block play, read-aloud marathon sessions, art projects and the like---I have been worn down by Janey. If she is happy, I am happy. I doubt many people could take as much as a day with Janey without reaching the same conclusion.

So, Ariel and the gang of Care Bears---live long and prosper.