Janey is 11!

In many ways, I'm glad to see Janey's year of 10 being over.  It was a tough year, by any standards.  It featured two long hospitalizations---one for psychiatric reasons, one for a ruptured appendix.  Partly because of that, her school year was rough, with many absences and a lot of behavior issues, and not much progress, if any, academically.  However, I look toward Janey's year of being 11 with tempered hope.

Who is Janey, right now?  She's a beautiful girl.  She's getting taller and taller---I wouldn't be surprised if 11 is the year she overcomes me in height.  She's endlessly interesting---you can say that about her!  She is prone to extremes of emotion.  She goes from the highest of highs to the lowest of lows, sometimes within minutes.  She loves the things she loves---certain music, some movies and TV shows, some people.  When she doesn't like something, you know it.  Her smile is something amazing.  Her scream is, too.  She is intense.  She is a force.  She's my Janey.

Learning to be Janey's mother is a process that will never end, I'm sure, but I feel like I've made some big steps this year.  One of the biggest is a step of acceptance---acceptance that Janey is not going to change.  She is who she is, and it's us who have to change.  We can work helping her with some issues, we can try to teach her and modify her behavior, but in large, it's our job to modify.  We have the tools to do it.  She, for whatever reason, doesn't.

Parenting Janey is not something a book or an expert or anyone else can tell me how to do.  I need to figure it out myself, along with Tony and her brothers.  There have been some moments from this past year so tough that I never dreamt, in a million years, that I would have such moments in my life.  I picture a room in the ER full of people trying to subdue Janey after she bit me and started flinging everything in site.  I picture being told Janey's appendix had burst and she needed emergency surgery, right then.  I picture the moment I got the call from her school that her behavior was such they were calling an ambulance to take her to the hospital.  I picture the night we struggled all night to keep her oxygen mask on, as her oxygen leveled dropped to dangerous levels over and over.  After a year of such moments, we no longer are living a life that parenting books cover.

But hope shines through.  The simple phrase "I'll be so proud when you calm down" has worked some miracles lately.  In leaving it up to Janey to calm herself, in praising the end result and not worrying about the reasons for the outburst or feeling we must react in typical ways, she is learning to calm herself, and we are learning something I thought I already knew, to emphasize the positive.  And we are learning to have true delight in the little moments of joy Janey gives us.  Yesterday, she said "Chinese rice, please?", hoping for a take-out treat.  Tony said "Chinese rice?  That's an interesting idea!" and Janey repeated back, in her perfect imitation voice, "Chinese rice!  That's an interesting idea!" over and over, encouraged by our laughter.  We never did get the Chinese food, which she handled, but we had a lot of fun.

I think the biggest change in my mind lately has been in how I see Janey within the family.  We've all realized, from the times she was in the hospital, that she is a hugely vital part of who we are as a family.  Somehow, in the past, she was always separate in my mind.  I thought of it as having two "regular" kids and one "special" kid.  It's hard to admit that, but it's true.  Lately, I have gradually changed that thinking. I have three kids, three amazing kids.  They are my family.  We might not be quite like other families, but no two families are.  All three of them are equally special, not "special".  So, a very Happy Birthday to my Jane---and, an equally Happy Birthday to Freddy, who turns 18 today!  August 16th was a very busy day for me, 11 and 18 years ago today!  And all my love to them and to Tony and William.  You are a family any woman on earth would be proud to have.

A Parenting Book for One

One of the huge frustrations of having a child like Janey is that any mainstream advice books for parenting absolutely don't work.  They don't cover kids like Janey.  They give advice that assumes a child can talk at a age-appropriate level and can understand basic cause and effect.  They assume a child is motivated by praise, and that a child's actions have external stimuli.  They don't cover outbursts that become so extreme a child ends up in the emergency room, restrained by many people.  They don't deal with screaming with absolutely no reasonable cause that lasts for hours or days.

I've realized over the years that I need to write my own parenting book, one that covers one child only, Janey.  I've written it in my head.  But I'm going to gradually post it here, bit by bit.  I do this because perhaps some parts of it will also apply to other children a bit like Janey.  But I caution---much of it won't.  Take what you can use, but each of you with a challenging child will also eventually write your own personal parenting book.

Today's chapter---how to calm Janey down when she has an outburst.  I should say, how to MAYBE calm Janey down, as very often, you simply can't.  But a few things sometimes work.  I'll list them in order of what will work for a milder outburst up to what we use in extreme situations.

1.  Food..  Often, when she's upset, she's hungry.  She doesn't seem to make this connection.  And her hunger, like so much of her, seems sometimes out of the blue.  She can have eaten a lot already, and still be very hungry.  We have learned to quickly get some food into her if she is starting to escalate.

2.  A shower.  Janey has taught us this one herself.  The most common thing she asks for when upset is a shower.  The warm water streaming down seems to calm her immensely.  We let her stay in the shower as long as she wants.  I sit in the bathroom with her and read.  The one has the added benefit of getting her away from the rest of the family, so they can have a little break.

3.  Turning everything off.  If Janey watching TV, or if music is playing anyplace, we turn it off.  We often have to unplug the TV so Janey doesn't turn it back on.  We stop talking much, we turn off lights, we make the surroundings as quiet and calm as possible, to avoid any external triggers.

4.  Covering Janey with blankets.  If I can, I get Janey on the bed and cover her up.  Like many kids with autism, the pressure of the blankets seems to help a good deal.

5.  Repetitive soothing touch and sound.  I will often massage Janey's feet with lotion.  While doing this, I'll sing a song, something mellow and quiet, over and over.  Sometimes it's just a made-up song, like "Massage, massage, massage Janey's feet..."

6.  Backing away.  If Janey is still upset after all this, I've learned lately I need to just get out of her way.  I don't want to be hit or bitten or have my hair pulled, for several reasons.  One is of course that I don't like being hurt, but also, if I am hurt, I naturally react in a way that escalates the whole situation.  So sometimes, I just walk away, and let Janey rage.  If she follows me, I keep moving.

7.  Nothing.  When Janey is truly agitated, nothing helps.  Nothing at all.  All that can be done is to wait it out, sometimes until she falls asleep.  Doing anything at all makes things worse.  So sometimes, we just stand back and do whatever we can do with screaming and flailing going on the background.  This is the hardest one for me to do.  I want to help Janey, but sometimes, there is no help.  She needs to just get through the episode on her own.  Of course, we step in to keep her safe when necessary, but otherwise, we just wait for the storm to pass.

As you might guess, it's been a long morning here.  I have used all these techniques and am now, in writing this, on step 7.  It seems to be working a bit.  Janey is watching nursery rhyme videos on YouTube, no longer screaming or hitting me.  Merry Christmas Eve Eve.

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.