Heavy Metal Parodies vs. Identifying Shapes

This morning, Janey was in a talkative mood.  She danced around the house, repeating anything we said and bringing in her own quotes and songs.  It's fun to listen to her when she's like that.  Then, she stopped and sang "Is he dead or evil?" over and over and over.  For those of you who might not be as familiar with heavy metal music as I am (and you are lucky indeed), that was a parody of a part of "Iron Man" by Black Sabbath.  The actual line says "Is he alive or dead?" but Janey certainly captured the essence of metal music. She hears it all the time, due to William being an extremely devoted metal fan and also a budding metal artist, who has recorded three of his own metal albums full of his own songs.

It struck me that although that was cool to hear, it wasn't totally unusual for Janey.  She often plays around with songs and gives them different lyrics.  It's something we all do a lot around the house, for whatever reason, and it's something I do to teach her things---put the steps to a song, or the take-home message to a melody.  Janey can play with music with ease.

That contrasts with some other skills, skills the school and us at home have worked with her on for years, and which she still has trouble with.  She can usually name a circle, now, and her ABA specialist, Mr. Ken, is going to start working with her on generalizing that skill, to name things that are circular, like pizza or cookies or a full moon.  I'm glad she's learning this, and its great to see her achieve.  But it's slow going.  She's been learning shapes for 6 years now, and she hasn't mastered them.  However, some things she learns in an instant, or quite easily.  She learns a new song upon hearing it once or twice.  If I put a new app on the iPad she likes, she immediately knows where the icon is, how to enter it, and either knows or quickly figures out how to play it.  I never sat down and showed her how to raise the sound on the iPad, or to pick shows on Netflix, or how to do many other things she does on a daily basis.  How is it that some things are so easy for her to learn, and some so hard?

Motivation is part of it, but not all of it. She can be incredibly motivated to earn a reward, but still not be able to do the task that earns it.  And her limited speech skills are also not something that can explain all of it.  Limited verbal skills don't usually lend themselves to parody songs.  It just seems like her mind is a patchwork of ability and lack of ability.  It's what makes her mysterious, and what I think makes intellectual disabilities different in people with autism than in other people.  Other kids seem to be able to learn with a slow and steady approach.  It takes them longer, but they get there.  Janey seems to learn in jumps, or not at all.  It feels like I can't teach her, because she doesn't learn what I ask her to learn.  She learns what she decides to learn.  It's frustrating, but at times also fascinating.  I don't see it as there being all kinds of unlockable areas of her brain, particularly.  I see it more as a very unevenly planted garden.  You can water and water, but you're not going to get flowers where none were planted.  However, where they were planted, sometimes they will grow just on their own, without a bit of help from you.

Two hours of morning

I wake at 6 am, or rather Janey wakes me up.  That's nice and late compared to her standard waking time, and I am full of energy.  I'm determined this day is going to be different than the rest of the vacation days.  This day, I'm going to get a lot done---lots of dishes, laundry, and also lots of creative and educational activities with Janey.  I look at my yesterday self with scorn---why do I get so lazy?

Now it's two hours later.  Janey is watching PBS, for the moment, and I'm sitting here with my 3rd coffee trying hard to summon up the energy to do anything.  As is often the case when I am overwhelmed like this, I turn to here, to this blog.  Thank you, my dear readers, for listening!

What wore me out?  Well, lots of things.  A lot of it is just doing the standard morning things with Janey----getting her dressed, fed, her hair and teeth brushed.  None of it is easy.  She doesn't cooperate with the dressing---passively---she walks away in the middle or acts like she doesn't have any idea how to put legs in pant legs.  She demands foods we don't have for breakfast, and settles for a half loaf of stale French bread, which she crumbles into thousands of pieces while eating it.  She is eager to have her teeth brushed, one of her favorite things, but I somehow do it wrong, and she starts slapping me repeatedly, resulting in the useless time out on the couch.  And hair brushing is always hell, as she screams like I am trying to kill her, but when I stop, she demands more brushing.

A few random times other than those, Janey is angry at me.  She does her new behavior---suddenly and out of the blue attacking me, hitting me and looking furious.  I hold her at arm's length, and she moves in with her head to headbutt my cheeks.  It's truly a bit scary.

Finally, a little break.  There is no cream for coffee, and William wants cream, so he offers to watch Janey while I walk to the convenience store.  I tell you, that walk feels like a huge treat.  I don't realize some days how isolated I get with Janey.  Just being in a brightly lit store full of assorted foods feels strangely thrilling.  I get the cream and some cat food, and wish the line was longer, as I listen with interest to the cashiers talking about how they don't get paid enough to train new employees.  The conversations seems fascinating to me---an exotic piece of the world outside our House of Autism.

And now it's just past eight, and I'm about done for the day.  Any energy I had is spent.  I have 9 hours to go until Tony is home, so of course I'm going to have to keep going, but it's not the energetic, creative keep on going I wanted to have.  It's the get-through-the-day-with-all-of-us-alive type energy.  Once again.

Magical Mama

This morning featured a scenario that plays out over and over again with Janey.  She asked me for oatmeal for breakfast.  We had one little packet of it, and I made that for her.  She ate it eagerly, and then, again, asked for oatmeal.  I told her we didn't have any more.  Within about a minute, she came back over, saying "Want oatmeal!"  I again told her we were out of oatmeal.  Over and over she came back and asked for it, varying things a little by sometimes saying please, sometimes saying "Want oatmeal right now" and sometimes just bringing me a bowl and looking sad.  I took her a couple times to the bin where we keep the oatmeal to show her there wasn't any, I offered her several alternatives, I told her we'd go later to the store and get oatmeal, but as always, none of that worked.  She seemed totally convinced that if I really wanted to, I'd have some oatmeal to give her.

It made me think that Janey probably thinks I can do anything I want.  Hey, sometimes I tell her no to more chocolate or candy, and then in a few minutes, suddenly I give in and give her more---so what's different about the oatmeal?  People can say no, and then it changes to yes!  Or it might not even be that complicated.  It might just be that she truly pictures that I can make things happen, make things appear.

The theory of mind bit comes in here.  I am quite sure Janey doesn't get that what is in her mind isn't public.  She'll often come over to me with a remote, and I'll say "What do you want to watch?" and she'll say "That one!"  I say "Which one do you mean?  I don't know what you are thinking!" and she'll get increasingly frustrated---saying "THAT ONE!  WANT THAT ONE!"  In her mind, I'm sure it's perfectly clear, and she doesn't get that I don't know what she means.  Sometimes, of course, she does ask for things by name, but I think that's when the name is coming easily to her verbally.  Often, words don't, but in her head, there's a picture or in her case, more likely, some bits of dialogue or music, and she figures that's good enough.  This probably isn't helped by the times I really do know perfectly well what she means, and still try to get her to say it.  She'll bring me a soda bottle and a glass and look at me beseechingly, and I'll say "Tell me what you want" when it would be obvious to anyone what she wants.  So she might figure that the pesky insistence on saying out loud what she wants is some kind of quirk of mine that I pull up at certain times.

When Janey is crying or screaming or hysterical, I'm pretty sure then too she thinks I know what is wrong, and am just not helping.  And even if what is bothering her is something I'd have no way to help, like a noise on the street or it being the weekend when she wants to go to school, she doesn't get that.  I could help, in her mind, if I wanted to.  I'm just not, for whatever reason.

I need to try to keep this view in mind when talking to Janey.  I think I'm going to try not to ever pretend I don't get her when I do, just to get her to say the word, and I'm going to try to think of a way to tell her when I can't do or know something.  I had some luck a few times with a song I made up for the car when she would ask for things in the car I couldn't get, like toys that were at home or for me to cook bacon or something.  I'd sing "IT'S IMPOSSIBLE...to make bacon in the car" repeated 3 or 4 times, and after a while she'd quote that.  Maybe if I keep my message consistent, she might, if not understand, at least know what to expect from me.  I'm going to try.

Out of the blue rage

Janey had a pretty good day today.  It was the first day of vacation week, and we have been cooped up a bit due to more snow.  Today, she got out a little, just to go to the store with Tony, and we gave her a lot of attention, and she seemed pretty cheerful.  Then, around bedtime, all hell broke loose.

I don't know what set Janey off---I rarely know.  I was knitting and she was right near me, watching some YouTube videos.  Suddenly, she started to scream, and came rushing at me in anger or fury or who knows what.  I held her and tried to calm her down, speaking softly and slowly and trying to comfort her, but it was no use.  Tony was in the bathroom shaving to go to a wake, and lately she has gotten very upset any time Daddy is not around, so I took her in to see him.  Something set her off again there, after her briefly calming down, and she banged her head against my cheek bone over and over and over as I tried to move her away.  She was screaming a loud and intense scream.  Tony picked her up and tried hard also to calm her down, but nothing was working.  Finally she settled enough so I could get her into bed and lie down next to her.  She was still mad, biting the blankets and pillow and yelling now and then.  I talked quietly and rubbed her back and after maybe 15 minutes, she went to sleep.

I try hard to figure out what brings on these episodes of rage.  They are rarer than the crying, but they happen now and then, and they are scary---scary for her, I am sure, and scary for us.  I think she was tired, and perhaps saw something in the video she was watching that upset her (it was a Baby Einstein video, so it's hard to picture what that could be).  It can be a small thing that sets her off, but then the screaming and rage and our attempts to calm her all feed on themselves and it is like what I've heard about a tornado forming---the rage itself creates the condition for more rage, stronger rage.

Winter is hard for Janey.  She needs time outside.  Vacations are hard too, and snow days, and days with everyone at home.  Being tired is hard for her.  A lot of things are hard for her.  I try hard to understand her. But sometimes, when I'm being smashed in the face, I just wish she would not be that way.  I feel like I'm doing everything I can, and she is not.  That's an unfair thing to think.  She is a child, she is autistic, she has learning challenges, she is not able to understand the world around her or her feelings or how to control them.  But being her mother is tough.  Tougher some days than others, and today is one of those days.

A room full of strangers

William had an overnight at a college that will remain nameless on Friday night, a program for admitted students and an interview for a great scholarship.  We drove up to pick him up on Saturday.  Usually, in a situation like that, Tony would go and I'd stay home with Janey.  It's just easier.  It's impossible to know how she'll react to new situations, and we like times like that to focus on the boys, not on her.  But I've been feeling left out of the college process, and I really wanted to see the college and to get out of the house a little.  So we took Janey with us.

Overall, it went well.  She enjoyed the ride, until the end (she seems to have a 90 minute per day limit on car rides---as soon as you pass that, she freaks out), she loved walking around the campus and she especially seemed to like the big room in the admissions office where we waited for William to be ready to go home.  It was a spacious room, with big chairs and with lots of windows, and for a long time, she just sat there in delight.  She was smiling her huge smile, and to my eyes, not being very noticable.  But still, we got stares.  I tried to tell myself that is was because she was 8, at a college, and beautiful.  But there were other young kids there, and they were not getting stares.  No, it was because at this point, she just looks different.  She doesn't act as you expect a child her age to act, even when she is not making a sound.  And then, occasionally, she makes her happy sound---the long "AHHHHHH" sound.  We barely notice that sound, but other people do.  I sat there trying to feel like an anthropologist, just observing the stares.  They weren't especially friendly stares.  They were pretty confused looking, or at times, a little annoyed.  This was a big day for a lot of these parents---their special high school seniors going to a big college event.  It was not a place they expected to see a little autistic girl.  It wasn't like there was any speech or event she was interrupting---it was just a waiting room.  But still, she wasn't part of their expected background.  At one point, she got very excited and jumped up and ran toward the door.  We did our usual thing---the very firmly and loudly spoken "STOP!" and ran after her.  That got the whole room looking.

So---what is the take-home message here?  I don't know.  I'm not going to keep Janey out of the public eye.  This was not a case where she was truly interfering with or disturbing anyone.  And my attitude I should have is---who cares?  Let them stare!  And I am usually fairly okay with that.  But somehow it bothered me more yesterday.  It felt like I couldn't do a normal rite of passage---visit a college my son was interested in.  Of course those starers were not stopping me, but their looks said a lot.  One woman especially, at the desk, just did not take her eyes off Janey.  At one point, she was going around the room talking to parents, and giving them little bracelet flash drives.  She avoided us.  She walked right past us.  That got my dander up a little.  Finally, I'd had enough of being in there, and took Janey to the car.  She was at the door.  I got passive-aggressive and said "What are those?" as she was holding a bunch of the bracelets.  She said "They are flash drives.  For ADMITTED STUDENTS"  Well, she'd been giving them to a lot of parents.  But I guess she assumed if we had a child like Janey, we certainly wouldn't have any child up for their big special scholarship.  Which we do.  Which I wanted to point out to her, but I didn't.

I guess I want to say---we are out there---those families with a special needs child.  We are everywhere.  Get used to us.  We aren't trying to interfere with your lives.  We are exquisitely sensitive to any situation where we might be disturbing you.  But you might still have to see us---in waiting rooms, in stores, at parks.  We aren't going to hide our kids away.  We don't bite.  Give us a friendly smile.  Talk to us.  You might find out our kids are pretty darn interesting and cool people.

Here's a picture of Janey enjoying the campus, just because..;.

Happy Valentine's Day, autistic parenting style

Tony and I were married just a little over a year after meeting each other.  In that time, we discussed a few things about what we wanted out of our marriage, mostly to do with kids, but even if we had dated for 30 years, I don't think everything that actually has happened with us would come up.  Sometimes, we talk about our first kiss, and if somehow we had been able to see then into the future.  Would one or both of us have bolted?  We didn't see it all coming---the terrifying pregnancies, twice hearing that autism diagnosis, watching  Freddy struggle to breath more than once, caring for Tony's increasingly sick parents, seeing friends and family members die, the money struggles that never quite seem to get better, our own illnesses and conditions---the insulin shots, the thyroid woes, the high blood pressure and asthma and on and on, the days where Janey screamed for hours and hours on end while we helplessly tried to make her feel better, the struggles and cares and worries that married life has brought us.

And yet, I think I'd do it again, and I think Tony would say the same.  Because for all those moments, there have been moments that were better than we ever guessed life would be.  There's the times we all have laughed as a family until we cried.  There's the pride we have felt watching our boys grow up to be more than we ever, ever could have dreamed of.  There's the joy in our beautiful blond daughter, singing a song that fits the moment exactly.  There's the love we still have for each other.  Tony looks better to me today than he did that long ago first kiss day.  He's grown into a man that I think any woman would be lucky to be married to---a wonderful father, a fantastic cook, a caring husband---a terrific man.

Autism tries a marriage to near the breaking point often.  There are days when Janey has been screaming all day and Tony comes home and I lay into him, screaming at him for nothing, because I've held in the screams. There's the times we fight over petty things, when the fights are really pent up frustrations with the limitations autism has put on our lives---the lack of time alone, the lack of relaxed family time, the endless needs of a toddler in a 8 year old's body.  Autism and its trials have not always brought out the best in either of us.  But despite all that, I don't think I could find someone I'd rather go through all of it with.  I hope Tony feels the same way.  We need each other, more than most married couples need each other.  We literally could not do this alone.

I love you, Tony.  Happy Valentine's Day.

Not a good day

Janey is not enjoying this 3rd snow day and 5th day off in a row from school.  She is very much not enjoying it, to the extent she has spent a huge portion of the day screaming at the top of her lungs.  This is despite my decision to put every ounce of energy into engaging her and keeping her happy all day, after yesterday being a bit hellish.  That is not working.  Right now I begged Freddy to take her upstairs to my brother-in-law's apartment for 15 minutes, so I didn't go insane.

I did keep her happy for minutes here and there.  We played a game where she picked if I hugged her, kissed her, or said what I call "nice words" to her, and she had to pick a finger out of three to show me which she wanted.  She caught on right away, and got lots of hugs and nice words.  Later, we did workbooks.  I decided to try just doing the workbooks myself and having her observe, and talking constantly about what I was doing.  It worked much better than trying to get her to do them, and I gave her a marker to hold and at times, she jumped in and did parts of them.  Someone mentioned here about error-free learning, and I haven't researched it yet, but that is what I was thinking of them.  Janey learns so much from videos, and I figure me doing something live might teach her even more.  It kept us sane for a while, anyway.  I'm pretty good at preschool workbooks, if I do say so myself.

Overall, though, it has been a day of screaming.  At one point, she was screaming "I can't take this any more!" which was heartbreaking to hear, although I think it was delayed echolalia she possibly could have heard from me, which is not something I felt proud of.  But there does come a point of just not being able to take it.  Thankfully, I have Tony and I have the boys.  And usually, I have school. Or I can take her someplace, which is not even very possible now with snowbanks covering even a lot of parking lots.

I feel like a failure after a day like today.  I think about some of the blogs I read where mothers seem to have eternal patience with their autistic kids, and whose kids seem endearingly quirky instead of completely impossible to understand and comfort.  Of course, Janey isn't always that way, but it's always a minute away from being that way.  I wish I could video the screaming, but I worry that if anyone saw it, they would think I was a highly unsuitable mother for taping her instead of somehow helping her, and they would not realize I'd spent the last many hours trying desperately to get her happy, and that nothing I can do makes a bit of difference, and that I'd literally do anything that would make her happier, if I knew what it was.

My 15 minutes are probably almost over.  Tomorrow will be better.