The invisible middle of the night mother's club

Janey is awake.  It is nearing three in the morning.  She has been crying, demanding, screaming---for hours.  I am beyond tired, at that place that is someplace past tired.  I see nothing in the future but a string of days and nights like this---held hostage by the needs of a little girl I love more than anything, but that I can't fix, that I can't make happy, that confounds so many people who try to help her, that is beyond the bounds of any advice or help or cheery talk that exists out there.

I am feeling despair, and I then I picture a club.  Around the world, although I can't see them, I know there is a club of mothers like myself.  Fathers too, but I am thinking of the mothers right now.  Mothers awake, trying to do everything they can to make a troubled child happy.  Mothers that have given up on lofty goals of self-fulfillment, that no longer believe the glossy claims of the parenting magazines.  Mothers that are just trying to make it through the night.

I know these mothers are out there.  We have talked, virtually.  I picture us all together some sleepless night---our children in the middle of a big room, doing their own separate things---screaming, crying, chanting in echolalia, laughing loudly, jumping and singing.  We mothers sit around the outside, drinking the coffee that sustains us, smiling at each other's children instead of staring as the non-members do.

Nobody in their right mind would want to join our club.  But once you are in, you are in.  You are in for life.  You are part of a pretty exclusive crew, a sorority with brutal initiation rites.  We have each other.  I am seeing you tonight, maybe as part of a sleep-deprived vision, but I am seeing you, all around the world, living my same life, keeping me going.  Here's to all of us.  Let's drink a cup of kindness yet, and hope for the morning to arrive.

Christmas Blues

I know I'm not alone in having a hard time with Christmas.  Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds.  But I'd dare to say it's harder for parents raising autistic kids than it is for most.  I've been feeling it a lot this year---a very lot.  I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way.  I've been trying to figure it out---why especially Christmas?  I think it boils down to the isolation autism brings.

"Christmas is for children".  That's a phrase you hear a lot, and something I believe.  Once you are an adult, your main role is giving a great Christmas to your kids.  But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas?  That is Janey.  I am quite sure I could skip the whole bit and she wouldn't care.  I could not have a single present for her under the tree, and she wouldn't even notice.  I could not have her hang a stocking for Santa, and it wouldn't bother her a bit.  It makes it all feel a little meaningless.  I will still have presents for her and a stocking, of course, but who am I doing it for?  I guess it's for me.  In a way, she might be happier if I DIDN'T give her a present or have Santa come.  She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then.  And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for?  (especially if you aren't very religious, and I am not)

All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes.  It's yet another part of life that autism steals from both Janey and me.  Writing this, I feel sort of petty.  I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot.  So why is it so hard now?  I can't really explain.  Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst.  Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is.   Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life.   But a big part of it is sadness for Janey.  I am sad she can't anticipate Christmas.  I am sad that presents scare and not delight.  I am sad she will almost certainly never have children of her own to give a Christmas to.  I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine.  I am sad for all that Janey will never feel or experience.

It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas.  I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey.  I hope you all have found a way, and that you find joy and peace this year and always.

The importance of consistency

Lately, a lot of things at both school and home are coming together to pound a lesson into my head---BE CONSISTENT!  Of course, I know intellectually that is very important for all kids, and especially for kids with autism, but sometimes, it's easy to let it slide, and the universe seems to be wanting me to remember not to do that.  Last night, for example...

Part of last night was not in any way my doing.  It was the doing of the electric company.  For some reason, our particular stretch of the street we live on seems hugely prone to outages.  I think it's where a lot of lines branch out of, or something like that, because we lose power far more often than anyone I know.  Over the summer, it got insane---days and days and day on end we'd be without power for much of the day and night.  Then the electric company would robo-call us and tell us they were going to turn off our power for a specific length of time to make repairs, repairs you would always hope would fix the problem for good, but never did.  Then we had a few months of respite, but that seems over.  Night before last, the power was out most of the night, on a cold night (but not stormy---this isn't weather related!) and last night around 5 pm, it went off again.  So when Janey got home, there was no power.

No power right away sent Janey into a very dark place, literally.  She couldn't do her switching on and off of lights, she couldn't watch her videos, she couldn't listen to her music, she couldn't get her dinner quickly---not good.  But she held it together at first.  Tony went out to get us an emergency pizza dinner, and Freddy and I sang with Janey.  When Tony got home with the pizza, the power suddenly came back on.  So we tried to do our regular take-out routine---watching a DVD while we ate.  It's the one time we don't give into Janey and let her watch what she wants.  But Janey's chain of routine had already been broken.  She didn't get to watch Daddy make dinner right when she got home, she didn't get to do the lights, she didn't get to switch around Netflix show.  We didn't even get pizza from the normal place, and she didn't want to eat it.  She wanted to watch Kipper.  We stood our group in a misguided attempt to follow our OWN brand of consistency.  That might have its place, but Janey's needs were more than ours right then.

Before the end of dinner, Janey started screaming.  I've described her screams before, but yet again I want to emphasize how extreme they are, and they were at almost their most extreme last night.  She goes rigid, red in the place, and doesn't hold back one ounce of lung power.  She screams so loudly it makes your ears ring.  It's absolutely incredibly loud and horrible to see.

And here's where I made probably my biggest mistake of the night.  We have worked out a routine that works fairly well for screaming.  I take Janey into the bathroom.  I lock the latch hook up high, so she can see it.  I stay in there with her.  I don't tell her to stop screaming.  I just say, calmly, that we are going to stay in the "screaming room" until she stops screaming.  I am available to hug her or talk to her or whatever she needs, but I don't open that door until she stops screaming.  Then I say "we can leave if you are ready to not scream any more.  Are you all done screaming?" I wait for her to say "All done screaming!" and then we leave.  If she screams again, we go back, but lately, once is all it takes.

But last night, I belatedly realized how hard the night had been on her, and then decided, foolishly, that because everything had been so tough, I would just try to calm her down by hugging her and talking to her.  It didn't work.  It didn't work for about 10 long, long minutes, the kind of minutes where time extends and it feels like 10 years.  Finally, I wised up.  I led her into the screaming room and did the routine.  Within about a minute, she calmed down and asked me to "open the door!" When asked, she said "All done screaming" and she was.  And I then carefully let the night follow her routines.  She watched a little Kipper, switched the lights a lot, and went to sleep.

My point here is that not following a consistent routine can feel, to the parent or caregiver, like being nice.  I didn't want to do the screaming room because I knew Janey had had a tough night.  I wanted to comfort her, to make an exception.  But that wasn't what Janey needed.  She needed the predictability of a routine that she understood.  She needed to know that things were not all changed, that our actions were predictable.  I can't be inside her head, but I think it's a confusing place.  I think she very much needs things to hold onto---come home, watch Daddy cook, watch a video, flip the lights, hear her dog book, and yes, go in the screaming room if she is screaming.  She needs school to follow routines like that, to have predictable responses and teaching methods and routines.  She needs as much consistency as we can give her.  Sometimes, it's beyond our power, like the lights being out.  But when it isn't, we need to be there to provide a predictable, routine-oriented scaffold so she can grow.

Puzzlers

Janey likes to keep us guessing.  She's good for our brains that way, like they say if you do a lot of crossword puzzles it can stave off brain cell loss.  Here's a few of the unfathomable Janey questions...

1.  Why do legs always have to be straight?  Janey can't stand anyone's legs to be crossed, or tucked under them, or bent at all, really.  She won't freak out over this usualy---she'll just let you know, by trying to straighten them over and over and over and over, until it's just not worth it and you put your legs the way she wants them.

2.  Why do lights sometimes all have to be on and sometimes off?  When Janey wakes in the night, she needs to change the state of the lights.  If they are off (as I prefer), they all need to be turned on.  If they are on, often they need to be turned off.  One odd time she was asleep and we were up watching a movie.  She woke just for a minute, went over to the living room light and switched it off and then on, and then went straight back to bed and sleep.

3.  Why do tops sometimes need to be taken off and then put back on?  This morning was an example of that.  Janey took off her pajama top at least 10 times, and then came over to me screaming because she wanted it back on.  I did it without comment the first 9 times, but then tried to talk to her about it a little.  Not a good choice---her scream let me know this wasn't open for discussion.

4.  Why does Janey ask for certain TV shows and then freak out when you put them on?  This is a constant issue.  Janey will ask for, say, "Kipper's Playtime".  You put it on Netflix, and at the first bit of it, Janey will get hysterical, grab the Netflix remote and madly change the show, as if you were trying to force her to watch something horrible.  The same happens with books.  Janey will bring me a book to read, I start to read it, and all hell breaks loose.

5.  Why does Janey ask to have her nails cut---a grooming activity most kids don't like---constantly?

6.  Why do all pillows have to be on the floor?  I have been on a sewing machine frenzy, making throw type pillows.  Janey likes these, but she likes then to be on the floor.  No matter how often we put them back on the couch or bed, next time we look, they are all on the floor.

7.  Why does Janey twist up her fingers?  She so often puts them in the oddest positions, like pretzels.  It looks very uncomfortable to me.

8.  Why does Janey almost always ignore the cats?  It's like they are invisible.

I could probably go on for hours---there are so many little habits or behaviors of Janey I truly don't understand.  I am sure there are reasons, and I have some theories, but overall, they are a mystery.  It's one of the reasons I most wish I could communicate better with Janey.  I'd love to know the whys.

Our school goals for Janey

Lately, for various reasons, I've been thinking a great deal about what my goals are for Janey's schooling.  In thinking about them, some are much like everyone's goals for their children, and some are quite different.  It's been an interesting thought process working them out.  I thought I'd post them here, and see if anyone has any thoughts or ideas about them.  If you do, I'd love to hear them!

Our goals for Janey

1. We want Janey to be happy, as much as is possible.
2. We want Janey to be safe, physically and emotionally.
3. We want Janey to learn to the extent she is able to learn
4. We want Janey to be around people who love her and understand her.
5. We want Janey to be part of a community of all different people, not just those with autism. We want her to be around typical kids and adults as well as others with disabilities.
6. We want Janey to be exposed to as much music and dance as possible, for we feel those are her strongest areas.
7. We want Janey to have consistency in her life---to be at a school that she will be able to continue at for many years. We want to minimize transitions in her life.
8. We want others to get to know Janey, in order to enrich her life and theirs. We want to give other children a realistic and true view of autism.
9. We want Janey to be able to experience as many of the normal parts of childhood as she can---holiday celebrations, school programs, classroom jokes and drama and community, playground time, all the parts of public school that we look back on as adults fondly.
10. We want Janey to know she is valued for just who she is.

The Return of the Screaming

Recently, we had the longest stretch of Janey being in a good mood ever.  It lasted about six weeks, and it was wonderful.  During that time, she had basically no bad days.  Almost every day was a happy day, a cheerful day.  She cried and yelled and bit herself very, very little.  It was one of the most hopeful times I've had since she was three and regressed.

I knew, reasonably, it wouldn't last forever.  For any of us, good moods don't last forever, and with Janey's history of cyclical mood swings, it's even more true for her.  So even when things were fantastic, I braced myself for them to stop being so.  Maybe I shouldn't do that.  I try hard to live in the moment, but for an overthinker such as myself, that is terribly hard.  I do enjoy the good times, very very much, but I think I find it important not to get unrealistic.  And so this current spell is not hitting me as hard as it otherwise would.

For the screaming is back.  It snuck back this past weekend, and has been in full force this week.  Not all day long---unlike the crying, this kind of screaming would be near impossible to keep up all day, but parts of each day have featured it.  It's the screaming that can't really be described, but I'll try.  It's the scream of someone in horrible pain, someone in such torment that they are not holding anything back.  Janey gets stiff all over, her face gets red and even sort of purple, she shakes, and she looks like her world is ending.  And she screams---so loudly it truly can make your ears ring.  She screams for periods of up to maybe half an hour, with barely a breathe in between.  And then---something makes it stop, and often, she is just fine afterward, cheerful and ready to go on with the day.

We search for reasons, of course.  The first thought is always pain---is she in some kind of awful pain?  She gets constipated, and at first, we thought that might be part of this spell, but she is no longer at all constipated and that didn't seem to help.  She doesn't have a fever, she doesn't show signs of sickness.  When we ask her to point to what hurts, she doesn't.  I wonder if it's a headache, but the fact that she ends the screaming after a bit and is just fine makes that seem unlikely.  So I think it's not really a pain thing, not physical pain, anyway.

Another theory I have is her lack of understanding of toilet training.  Earlier this week, she was holding in her urine.  I had put her back in underwear for school, after going to back to pullups for a while during another urine holding spell, but right away she started holding in urine again---going up to 14 hours without letting it out, and coming home, asking for a pullup and wetting right through it with a day's worth of held in pee.  We have noticed she sometimes seems more upset after peeing---does she think that we are upset with her just in general for needing to pee?  I can't imagine it---I know no-one at school would make her feel that way, and I know we don't, but I wonder if her mind just doesn't quite get the concept of toilet training, and someone sees the point as being not supposed to urinate at all.  Who knows?

Or maybe the screaming is her realizing her limitations.  I often wonder that.  Does she want to tell us things she doesn't know how to say?  Does she somehow understand what she can't do?  Or is she able to do things we don't know she can, and she is sick of us not getting that?

Maybe, the screaming is just an artifact of a brain with differences.  Maybe sometimes, the screaming is just triggered by an errant electrical impulse in her brain.  It's impossible to say.  We look for triggers, but so often, there are none we can see.  And so sometimes the best way to handle the screaming is to just accept it.  That is what I settled on doing last night.  I tried to see it as a part of her---not something I need to fix or figure out, but just what Janey was, right then.  I patted her back, I gave her a bath, I talked to her.  I didn't refer to the screaming.  I tried to assume she had no control over it, and that is would pass when it was ready to pass.  And it did.  She had a fairly good night, after a long screaming spell.  She screamed a little in the night, but not a lot, and is often the case, she is cheerful this morning.  We will see what the day holds.   But I'm thinking sometimes, part of accepting Janey is accepting that there are going to be behaviors we just don't understand, and maybe never will.

One morning with Janey (and thoughts about progress)

Janey woke this morning at six, which is a pretty typical time for her.  She's been sleeping better lately, or I should say she's in a good sleeping phase, as that goes back and forth.  She woke up cheerful and singing, which is the case about half the days, and is more the case if she wakes up after having crawled into bed with Tony and me during the night, and one of us is still in bed.  I think she has a fear of being alone.  She got up and right away started her morning list of wants "Strawberry milk, please!  Toast and butter, please!  I want bacon!  I want oatmeal!"  Breakfast is her big meal, and she ate most all of those!

After eating, Janey wanted some videos, and I put them on, and changed them at her will.  She is less into Netflix lately, probably because we were having some kind of problem with the remote for a while, and it wasn't responding to her button pushes, which made her very upset.  So now she is relaying on good old fashioned VHSs, which don't fail her much!  After a bit of watching, she fell back asleep, which is another new pattern for her.  It makes it a little tricky getting her ready for school.  I put it off until the last possible moment, but she is still very annoyed when I wake her to get dressed.

Dressing goes fairly well, and hair brushing relatively well.  Janey doesn't care for her hair being brushed at all, but she now tolerates.  I say most days "I'm going to be extra gentle today" and if I skip it, she's say "EXTRA GENTLE!" and remind me.  I got her teeth brushed and her coat on and we got out the door.  However, Janey suddenly ran back in and got a book she'd been into lately---a Wo Wo Wubsey book called "A Tale of Tails"  I asked her if she wanted to take it in the car, and she excitedly jumped, happy I'd figured her out.

The ride to school was great, as it's Christmas music season!  We listened to a Boston Pops singalong of modern Christmas songs, which ended with a big doing of "Jingle Bells"  Janey was clapping and smiling and laughing, and I loved seeing it.  She was so thrilled just to hear the songs she knows, and appreciative of the arrangement.  I love seeing her enjoy music!

When we got to school, Janey insisted on bringing the book in with us.  That made me very happy.  It's recent she's falling in love with certain books, and I couldn't be more thrilled.  I have used the methods I used with the boys over the years to try to get her to become book obsessed---having many, many books around the house, always dropping everything if she wants to be read to, leaving books she might like where she'll find them on her own, instead of trying to force her to listen to them, and not treating books like they were made of glass---letting them be as freely used as toys would be (A million thanks to Mary O'Grady Leonhardt, whose book Keeping Kids Reading has inspired me so much so many times---she reads this blog, and it's to me like having one of my idols read it!)  These methods seem to be finally paying off with Janey, and she's developing a huge attachment to some books, and wanting them read over and over.  With the recently discovery she can at least read some, this means even more to me.

Janey walked into the school with a smile, holding her book.  One of the sweet girls from her class saw her and walked down with us to her room, and Janey entered the classroom as happy as could be, book in hand, ready for her day.

On my drive home, for some reason I started thinking about progress.  On the outside, it might seem like Janey hasn't made a lot of progress over the years.  If you went strictly by test results, by speech, by graphing charts, it would look like she hasn't.  She still doesn't talk much.  She still couldn't pass a test requiring basic preschool skills like knowing shapes and colors and letters.  She isn't fully toilet trained.  She doesn't dress herself well.  She requires watching every second.  She is still very, very autistic.

However, thinking about the morning, I realized that there is actually a lot of progress that has been made, in less tangible ways.  From sleep getting a little better, to her tolerating things like hair brushing, to her letting me know she wanted the book with us, to her love of music being ever more shared with others, to her happy entry into the school and her smile at her friend, to just being more consistent, more predictable, more present---the days are easier than they used to be.  She is still very tough.  If you compared her to other kids her age---well, that would be depressing.  She is still intellectually disabled.  However, through her own maturing and our own increasing ability to understand her, she is progressing.  She's making significant progress, in ways that can be felt more than quantified.  An ordinary morning, broken down, is a series of little moments of progress.  You go, Janey!