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.

Sleep, Depression and all that jazz

I'm starting to think that if I want Janey to do something, I should just say here on this blog she never does it, because then she will.  I said the other day she never naps, so of course a long nap of hers about ruined this weekend.

Friday night was a little tough.  There were meltdowns, which I wrote about, but I did practice what I preached here and got her calmed down and sleeping.  For a while.  She was up about 3am, ready to party. She hasn't done too much night waking lately, but when she does, well, it's not easy.  I'd say it's almost like torture.  I feel desperately tired but I have to make myself stay awake, to keep Janey safe.  I do everything within my power to try to get her to sleep, but if you have a child who has no desire to do things just to please you, who understands what you say only some of the time, who has an inner motor which goes off at its own times---trying to get them asleep is about as successful as trying to herd cats.  Janey alternated between crying and hysterically laughing.  We did what we often give in and do and put on Netflix, and let her watch some TV, which allows us to sometimes drift off for a minisecond if we are sure she's engrossed, but no longer than that, or she'll go into the kitchen and toss stuff around, or suddenly get a notion to jump on Tony or me, elbows out, poking us hard.  Even if none of those things happen, after a while something triggers a desire for a snack, and she starts demanding "I want ketchup!  I want sauce (tomato sauce)!  I want noodles!  I want chicken!  I want purple ice cream (which is what she calls all ice cream now)!" For variety she throws in a few "I want to go outside!  I want snuggle with Mama! (which always sounds so promising but only lasts a few seconds before she hops up again)  I want shoes on! (which means she wants to go someplace in the car)"  We say the right things---we don't eat in the middle of night, we are all going to sleep right now, it's not time to get up---but saying them, truthfully, does less than no good.  And so we exist in a zombie-like state until she falls back asleep, which she did about 7, and then she woke up again about 8.  

Usually she's up for the day, but for some reason, not Saturday.  She lay down about 11 and slept right until 2.  We tried to wake her half-heartedly a few times, but to be perfectly frank, it was pretty relaxing having her nap.  We had 3 hours of Saturday to do what we wanted with---of course, within the house and boys allowing.  When she got up, though, she was not in a good mood.  It was a fussy afternoon and evening, until she got back to sleep about 8 (no matter what, she goes to bed about 8.  Now watch that not be the case tonight).  And yes indeed, she was up at 2am.  We gave in pretty much and just got up with her.  We watched TV, including at around 4 a very interesting nature show about Australia.  Janey drifted off around then, and we were back to sleep until about 7.

That's a long story of sleep and not sleep---you are probably asleep now reading it.  And it has induced in me today a huge bout of depressed feelings.  When I have a few nights like that, I get NOTHING done the next day.  I don't get laundry done, work done, cleaning done, dishes done, anything at all.  Tony does a little better, and he has been a saint today---cooking and taking Janey to the playground and all that.  And I sit around and hate myself for being so tired all the time.  I try to reason with myself---I say all the right things---that anyone would be tired after a few nights like that, that just getting up and taking care of Janey every day is work enough, so on and so on.  But I hate days like this.  I hate feeling like a loser, like someone who barely has the energy to crawl to the couch and crochet all day.  I hate the mess around me that never gets cleaned up, because I never have the energy to do it.  I hate my medical issues that make me even tireder---the latest fun additions there are Sjogren's Syndrome  and Undifferentiated Connective Tissue Disorder, which I won't get into the details of because my mother always taught me that no-one wants to hear all the details of your medical issues, but you can click on the names for a link if you are interested---but they both have the side effect of severe fatigue, as does my thyroid disorder.  And yet I still feel like a lazy person for being tired, a hypochondriac although I have blood tests with concrete numbers to show I do have a reason for being so exhausted, beyond just being 47 and caring for a toddler in an 8 year old's body.

This isn't my best written entry here, I know.  I am rambling a bit, probably because I can barely keep my eyes open.  But it helps to write.  Thanks for listening, if you've made it this far!

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.