Still Screaming After All These Years

This afternoon was hellish.  There is no other word for it.  The morning wasn't any piece of cake either, but things really kicked into gear this afternoon.  It's hot as, well, hell, about 98 and humid.  Janey didn't sleep well last night, and although she slept in some this morning, we all are tired.  I left to go to my therapist about 10:45---the one time in the week that is just for me to rant, as I tell him.  As I left, Janey was screaming for a car ride.  Freddy was staying with her.  I told him if it got to be too much he could call me and I'd come right home (it's right around the corner).  He was a trooper and handled her.  When I got home, feeling refreshed from getting out of the house for once and having some time to vent, I was determined to do just what Janey needed to keep her happy.

She was no longer interested in a car ride.  What she wanted, or thought she wanted, was for me to put on shows for her and then get out of the TV room.  So I did that.  In the course of about an hour, I changed shows literally about 30 times.  Most of these times included tears from her when I didn't immediately understand what show she wanted.  As soon as the show was on, she'd say "Go away!" and point to my bedroom.  I'd go in there, and about a minute later, she'd come in with the remote for me to change the show again.  If I said ANYTHING besides a very cheerful, chipper "Of course!", she would scream---the ear-splitting scream.  One of the times I said "Okay" in a neutral kind of voice, just as an experiment, and that earned an especially loud scream.

About every third show, Janey asked me to cuddle on her bed with her.  I did.  The cuddles lasted at most 30 seconds.  And then---back to the shows, the sending me away, the asking for a new show...

You might ask, very reasonable, why I let this go on for an hour.  The answer is...I'm tired.  I tried the more measured approach the last few days, the #3 approach I mentioned in my last post.  I showed her a timer app, told her "just a minute" over and over, used "first" and "then" to explain...and it wasn't going well.  To say the least.  This morning, with my tiredness and hers, was the breaking point. Very often, just doing what Janey wants keeps her happy.  She does ask to change shows, but not at that pace.  She does scream, but not constantly.  But today, whatever haunts her brain at times was in full force.  I think it's OCD.  The changing of shows and the cuddling for a second and the fact I need to leave the room---all rituals, rituals I think she is using to try to ward off the feeling that something is off, something bad is going to happen, something isn't right.

I know those feelings.  I've had those feelings, so many times.  I am on medication for those feelings.  I understand those feelings---I have the tools and cognitive abilities to know they are a glitch, something off in my brain, a chemical mis-read.  But Janey doesn't.  To her, the compulsions, the rituals, are something that, when she's fired up, simply feel like complete necessities.  And often, doing them for a while calms her.  Not today.

After an hour, I was at the end of my rope.  I turned off the TV and suggested a shower.  That often can break the chain.  Not today.  Janey did want a shower, but she screamed all during it.  She threw my iWatch onto the floor, the watch I was given as part of the Framingham Heart Study to track my movements.  If it breaks, there will never be another one.  It didn't break, but it hit the floor hard.  Janey got out of the shower after a few minutes, still screaming.  I was feeling shaken.  I called Tony, to talk me down, which helped, but poor Tony, having to deal with a traumatized wife and a screaming daughter on the phone.  For a long, long, long time, after I hung up, Janey screamed.  I spoke to her as soothingly as I could, while literally praying for calm.  I am fairly agnostic, but you know the saying about foxholes.

And then---Janey calmed down, for now.  I put the TV on computer mode, so she could pick her own videos, which she is doing.  She hasn't asked for anything during the 15 minutes or so it's taken me to write this.  Just now she's come over and asked for a car ride.  Traffic outside is backed up outside our house to the point that getting out of the driveway even would take a while, and I can't drive when Janey is volatile.  It's too dangerous.  So, she has settled for a walk to the store.

Why do I write this?  It's not, as sometimes parents like me are said to be doing, to get sympathy.  Raising Janey is my job, and my privilege.  Sympathy is not something I need or want, not the kind of sympathy that says "Your life is so hard!"  or "I could never do what you are doing!"  Everyone's life is hard, and most everyone, if they happened to have a child like Janey, could raise them.  It's not to try to get help.  I've given up on that.  The kind of help that would actually, you know, help, doesn't exist.  Additionally, I'm pretty good at taking care of Janey, and today was almost more than I could stand.  I would not put Janey or anyone else in the position of having to try to handle this kind of day.

Why do I write about days like this, then?  I write so others living this life know they aren't the only one.  I write because the most helpful thing ever for me is knowing that there are others like Janey, other parents like Tony and me.  There are lots of people living this life.  I write because that's what I do.  I've always written---diaries, reviews, letters, postcards, stories---I'm never not writing.  I write for the same reason others volunteer time or money, or talk to their congressmen, or run for office, or do research---because it's the way I can try to contribute to others living a life with a child with autism.

But I also write for Janey.  I write because she can't.  I write because she is an amazing, wonderful person who is living a very hard life, much, much harder than I am.  She is dealing with many of the same demons I've dealt with my whole life, but without the ability to understand the tricks the mind plays on us.  She's dealing with parents who sometimes get to the end of their ropes and stop doing the things she feels need doing.  She's dealing with a world that doesn't always welcome her kind of diversity.  She's living a life that is not an easy life, and she deserves to have her story honestly told, as best as I can.  And so my title means both that she still screams, but also that I am still screaming out our story, after all these years.

Trying to radically accept myself

Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance.  I want to accept her as who she is, not try to change her.  I want to delight in her special qualities, without the special being a "special" as seen in "special needs".  I want to be frustrated with her as who she is, not who society feels she should be.  I want her to be herself.  I read a good blog post about this today (read it here) and it got me thinking a lot.  I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.

Last summer, I spent a day being researched upon by the Framingham Heart Study.  If you don't know about them, it's worth following the link to find out more.  My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study.  It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan.  Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know.  About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.

That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests.  It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis).  Basically, that means my liver is inflamed and scarred by means of something other than alcohol.   It's a strange disorder.  No-one knows exactly why you get it, and there is no treatment.  It's just---there.  Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.

There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome.   The result is a kind of tiredness that is hard to even explain.  I wake up fine, and I'm fine for about three to four hours.  And then I get tired---so tired that I almost always have to take a nap.  I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.

As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself.  I hate the tiredness.  It makes me feel like a lazy loser.  I get so little done.  I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse.  As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness.  I don't have to hate myself for it.  I can do what I want to do for Janey.  I can radically accept myself"

It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying.  That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to.  If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home.  My health issues are part of me.  They are part of what I need to accept.

I debated whether to write about all of this here.  But I write about Janey, and I want to be similarly open about myself.  It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.

I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago.  I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too.  It's a work in progress.

What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.