The mother I mean to be vs. the mother I am

A few weeks ago, I attended a panel at Janey's school made up of five adult women with autism.  It was tremendously moving and informative.  I left that day determined to work harder to help Janey reach her potential, as the women on the panel had, to strive to ignore labels about functioning, to enrich Janey's life in any way I could, but also to respect her as a person, to follow her lead.

I'm not doing a good job.

The bane of my existance

Let's talk about last night, or, rather, early this morning.  Janey went to sleep about eight last night, late for her.  She woke at 1 am.  Tony tried to get her back to sleep, but she was having none of it.  At two, she came to me in bed and woke me up.  I told Tony to sleep and I would take over.  At first Janey watched YouTube videos on the TV, which can be used as a computer monitor.  She does this with complete ease, but after a while, she wanted to watch things on Netflix or Hulu or Amazon, which is done through an Amazon device.  Although the device is in my eyes no more complicated than a mouse, probably less so, all my attempts to teach Janey to use it have failed.  She wants us to put on the shows for her.  That's fine, except she constantly wants to change shows.  After we spend long moments figuring out what show she wants, she watches it for about 30 seconds and then wants us to switch to something else.  That gets old fast at the best of times, and in the middle of the night, it gets unbearably old unbearably fast.  We hobbled through the night, with both of us speaking harshly to the other at times, both of us not doing what the other wanted done.

So what do I do?  How do I handle this?  I KNOW she could learn to use the remote that controls the device.  But when I try, she screams.  She lashes out.  She gets hysterical.  If I simply refuse to change shows any more, she will persist with asking and screaming and so on for hours and hours.  She doesn't quit.  She doesn't give up.  Believe me, I have tried this for YEARS.

I've told myself at times to just accept this, to see it as a time to interact.  Fine.  But it's not an enriching interaction.  It's the same, every time---finding a show she wants and picking the episode she wants, through a combination of single words and backwards and forwards pointing, putting on the show, then repeating in less than a minute.  Over and over and over and over and over, until finally somehow she finds a show she actually wants to watch---for maybe 5 or 10 minutes.  Then it starts again.

This interaction is mirrored in so many others.  Janey asks for a car ride.  She wants to get chips at the store.  She wants a shower.  Nothing else will do.  No variations work.  No amount of refusing, or explaining, or substitution, or distraction, or anything else, works.  When I try something new, she refuses it.  When I give in and do what she wants, but I don't do it fast enough, or exactly the same as the time before, or with a happy enough demeanor, she is furious, a fury that doesn't stop until it gets done right.

In my dream of the mother I want to be, I am endlessly patient. I am creative enough to figure out ways to either break her out of her routines or subtly enrich them.  I am never tired, never sleep deprived, never bored, never just fed up.  In my dreams, Janey is different too.  She responds to my patience by trying new activities.  She surprises me with glimpses of the thoughts I know she has stored in her mind.  She is quirkily fascinating.  She is a full partner in our joined quest to give her the most wonderful life a girl with autism ever had.

The problem here is, of course, that Janey and I am both human.  We are not stereotypes.  We are not perfect.  I get tired too easily, thanks to a thyroid that has given up and a liver damaged by the medication that was supposed to help me have a safe pregnancy with Janey and the lovely "unspecified autoimmune disease" which is slowly getting specified as several types that cause, among other health issues, extreme fatigue. In addition, I am often too easily discouraged. My desire for difficult interactions to end quickly can cause me to take the easy way out of them often.  Janey is stubborn, unyielding.  She is who she is, not because of autism or despite autism but simply because we all have a collection of traits that make us who we are.  She is strong, determined, enthusiastic, yes, but also stubborn and unyielding.  Together, we make up a mother/daughter pair with many strengths, but also many weaknesses.

The mother I mean to be finds a way around the challenges.  The mother I am---sometimes not.  Janey and I am both who we are.  Perhaps that is the message here.  We all do the best we can, every mother and daughter, with the limitations and weaknesses we have, but also with our strengths and our determination and our love.

Counterintuitive Wins Again

Janey's sleep started to be more and more of an issue around the beginning of August this year.  What was an occasional night waking turned into an every night thing, with her staying awake for hours at a time.  From about the middle of August until around a week ago, I think we had only one night with full sleep.  It was becoming harder and harder to take.  We tried most everything we could think of, including a new medication, melatonin and any behavior approach we could find.  Except one, and that is the one that finally might have worked.

Tony mostly deals with Janey at night.  This is because medical issues make me very tired and also because he is better at getting back to sleep after being woken up.  We have a rule between the two of us, though, that if he or I get overwhelmed, we just tell each other and switch places.  It's necessary, with a high need child like Janey.  However, Tony still does the brunt of the night work, and I greatly appreciate that.  About a week ago, as I slept, Janey once again woke up, and in the morning, Tony told me he had done something new.  He completely embraced her being awake.  He didn't tell her to go back to sleep, he didn't try to keep things quiet, he didn't try to make deals with her, he didn't get upset, he didn't show a trace of annoyance.  He simply accepted she was awake, and had fun with her.  He played the recorder and they sang, they watched some YouTube together, they drew (which to Janey means making her J's on paper), they laughed together---they had a great time.  And after about two hours, Janey fell asleep and stayed asleep, the rest of the night.  And since then, for the last week, Janey has slept all night.  She even slept in on Sunday morning---we all slept until about 10.  It was incredible.  A couple days, she napped, and even then, slept at night.  Every night, we are astonished that another night has gone so well.

Now, of course, as I'm writing this, I'm knocking on wood.  And I in no way think the sleep problem is solved.  Janey is cyclical, and it just could be that the bad sleeping time had reached a natural end.  But it also could be that Janey needed to see that night or day, we were there for her.  Maybe she kept waking up hoping for a time like Tony and she had.  I don't think Janey gets the difference between day and night much---not in that she sleeps all day, but she doesn't understand why we aren't as alert at night when she does wake up.  Maybe now, if she wakes for a minute, she isn't feeling she has to test to see if we will still be happy to see her.

So, so often, Janey has shown us that the regular parenting truths don't work with her.  They don't work because she is autistic, and doesn't have the same motivations and reactions to how people act as most kids do, and they also don't work because she is intellectually disabled.  She doesn't have the ability to reason out things like most kids do.  I don't think she can think out "I really shouldn't bother them at night.  They need sleep.  I need to let them sleep.  They won't be happy if I wake them up"  Her mind doesn't do that, because of the autism and the retardation.  I believe she thinks on a more basic level, a more self-centered level, because that is what she is able to do.  I have to believe she's doing the best she can.  By trying to deal with parenting issues the way that would work best for most children, we are not honoring who she is.  It is something that only now I think I'm truly understanding.

So, at least for now, if Janey awakes in the night, we will do our best to make sure she knows we always are happy to see her, day or night, and we will hope that it keeps working.  My fingers are crossed.

When is autism going to make me tough?

I would like to get tough.  By tough, I don't mean mean, or angry, or physically strong.  I mean tough mentally, in that what people say to me won't bother me, in that I can not be moved to tears myself by Janey's crying, in that I can stand up for Janey always, to anyone.  If it's true what the cliche says, and that you are given "special" kids because you are especially strong, well, as I've said before, a mistake was made.  I am not strong.

What would a strong, tough mother do when, as I wrote about last time, someone cursed out my child in a grocery store?  What would a tough mother do if, as happened when Janey was younger, she was promised a full day seat in preschool and another, tougher family got it instead?  What would the kind of mother I wish I could be do when Janey has been screaming for hours demanding something?  That tough mother would have confronted that woman and educated her on autism and politeness.  She would have gone to the superintendent or higher demanding Janey get the full day placement she deserved.  She would steel herself against Janey's crying, and absolutely never go out in the middle of the night to get her strawberry milk to make her stop crying.

I'm not doing opposite talk her---trying to say that being tough isn't really the right approach.  In those cases above, it is.  Being tough is what I should be.  But I can't.  I'm no good at it.  I heard the phrase as a kid "You catch more flies with honey than with vinegar" and I've run with it my whole life.  I am not confrontational.  I am no good at being strong-willed.  I want to keep everyone happy.

Autism parenting is supposed to change that.  I've read about that happening in countless books and articles. People who never thought they had it in them are marching into schools or politician's offices or public rallies and speaking up, because their child has given them the strength to do it.  And they are making firm decisions about raising their child---no more videos!  no more middle of the demands!  no more giving in!---and no matter how much their child cries or hits themselves or seems to be falling apart, they KNOW they are right. They stick by what they have decided, and everyone is better for it.

What do I do?  I accept the half day placement.  I walk away from the nasty woman and go to the car and cry.  I don't make any demands.  I tell Janey no to videos, no to strawberry milk, no to her 3rd bath of the day, and when she cries long enough, and looks frantic and sad, I give in.  I don't want her to be sad.  I don't want to confront people.  I don't want to demand things.

Somewhere along the line, a cosmic mistake has been made.  I'm not the tough mother I should be.  Either there's some tough mother out there waiting in line for her autistic child that was given to me by mistake, or the transformation that was supposed to overtake me once I was given the autistic child was blocked somehow.  I don't think I'm going to get tough at this point.  I mean, if Janey was being attacked by a lion, I'd jump in.  I think I've got enough protective instinct to protect her in cases like that, and in fact a few times I've found I did, when I truly felt she or my boys were wronged.  But it takes a lion attack style happening to bring that out.  I'm not a warrior mother.  I love my kids more than I love life itself, but that has somehow never transformed into what all the autism literature has let me to expect, a huge infusion of tough strength.

How do you solve a problem like night waking?

For the last week, Janey has woken up every night around midnight or 1 am, and stayed up for a couple hours.  It's incredibly tiring.  Because I am eternally hopeful, I went internet searching for solutions to this problem.  Big surprise---the ideas I found would not work with Janey.  It makes me feel like some kind of defeatist who somehow relishes being able to complain.  Growing up in Maine, that kind of attitude was not greatly admired, as so I think I worry too much about appearing that way.  Believe me, I wish there were solutions for more of the issues with Janey.  I'd love to have solutions.  But the most helpful thing I found in my research was actually just reading that lots of other parents of autistic kids have the same problem, and are at the same loss as to what to do.

The problem with the autism-specific ideas that I found was that they were, as I often find, aimed at higher functioning kids than Janey.  A big theme was just accepting the waking, and letting the child play on their own so you could still sleep.  That would not work.  Janey can't be unsupervised.  Not for a minute.  So if she is awake, we must be awake, one of us, anyway.  Thankfully, I have a husband who shares nighttime duties with me (and probably does more than his share), or I would have long ago gone to the place that mothers go that just can't do it anymore (and I'd like to know where that place is, as I might just have to visit there some day).  Another idea involved pictures, or diagrams, or a clock with a sun and a moon on it, to explain why we don't get up in the night.  Yeah...that is not going to work.  If I could explain things like that to Janey, she'd probably be at the level that she could be unsupervised in the night. A few places suggested medication.  I am not adding any more medication to Janey's routine, and even if I did, they didn't sound hugely effective with night waking, more with getting to sleep in the first place, which isn't Janey's problem.  She goes to sleep just fine---better than most kids.  She goes to sleep TOO fine, often---too early and too deeply, and gets the sleep she needs to get over that edge, better to be bright and cheery and raring to go in the wee hours of the morning.

I think there is something in Janey's brain to do with sleep that is just different.  When she wakes up, and it's dark, it doesn't seem to trigger in her that she should go back to sleep.  She must see that it's dark, and that we don't seem as lively as we do in the daytime, but the way she acts is exactly the same as she acts during the day.  She'll ask us to cook things, she'll ask for TV, she sometimes asks to go to the store, or to school.  She'll put her shoes on.  We sleepily tell her no to those things, that's nighttime, that we need to still sleep, and she might echo back what we say, but it makes no real impression.  It doesn't seem to matter what we do or say.  She'll go back to sleep when she's ready to go back to sleep---usually about 3 am.  Then she sleeeps until 5 or 6, when she's up for the day.  She almost never naps.

One place I read said their child does the waking up just in the winter.  I think that might be partly true---I should try to figure that out.  They said they think it's tied to exercise during the day, but it could also just be part of a seasonal cycle, as many things seem to be with Janey.

As I wrote yesterday, Janey is in a very cheerful pattern lately.  The sleep is tough, but compared to the crying all day times, it's not terrible.  I nap during the day if I have to, Tony goes to bed very early if he has to.  We manage.  But it's another thing I project into the future about.  What will happen if Janey learns to wake without waking us up---if we are out cold and she wakes up and gets a notion to do something dangerous?  We are light sleepers, by necessity, and she always wakes us up if she's up.  But if she doesn't, someday, that's the really scary part.  And I'm too sleepy today to deal with that thought.