Friday, December 6, 2013

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.

6 comments:

Paolo said...

My boy is 5 and mild to moderate autistic, whatever that might mean..
He screams when frustrated, nothing like Amy in terms of length, very short, just a few seconds, but truly scary. It's not a painful scream ... it's guttural. In the few occasions he did that in public, people look truly scared. Luckily this happened just a few times.
From his behavior the screaming is clearly connected to frustration .. either because he can't do something he wants to do, or because he is told to do something he doesn't want to do. So he lets it out. When frustrated for failing some task he wanted to do, after the short screaming burst, tries again and most of the times, he figures it out. If the screaming was about being asked to do something he didn't like, after the scream, he moves to do what he was asked.

There is the trapped mind the body theory that might apply to Amy, to some extent at least. I have read book by a Japanese autistic kid, who says often times he is not in control of what his brains decides to do with his body, all he can do, from within his mind, is watching himself doing things he had no intention of doing.

It might be something that relates to Amy. Then again, we know there is no such thing as generalization in autism.
The book title is "the reason I jump"
It's an insight from the perspective of the kid, he started writing at 13 I think ...

Good luck to Amy and you.
Paolo

Paolo said...

Sorry about the name mishaps, not sure why I thought your daughter's name was Amy instead of Janey, one reason might be the autistic girl Leo goes to swim class with, whose name is Amy. My apologies.

Unknown said...

Dd you ever have a EEG with Janey? Or look into possible seizures? Age goes through mood swings and will still have screaming fits over nothing. Not as much as she did though when she was young. But now looking back before the grand mals and more noticeable petit mals started she was probably having over a 100 silent seizures that either appeared as behaviors or quirks. When she was in her teens they diagnosed her with Tourette's cuz of her vocals and twitching then random screaming. Then when the twitching turned into actual grand mals we found out the culprit- epilepsy. Now looking back what you described as her face turning red and it look like she was in extreme pain is kinda what age was like. Age grew up engaging in breath holding spells where her face would change colors and either she would just scream or become so upset she was barely breathing. Ages pediatrician told her mother to ignore such behaviors as they are attention seeking. Reading up on it on epilepsy sites and breath holding spells in young children can be signs of seizures. Usually individuals with autism develop seizures into puberty. Idk if this is true or not. But age changed when she hit puberty. Her aggression got worse so did her self injurious behaviors. Lets just say it became one of those life decisions no family wants to do.

Today we can pinpoint a seizure brewing in her head. She can become hyper. Extremely giddy or overly happy. Very moody and even act out over nothing. For example- Tuesday night she went bonkers. Running back and forth. Constantly giggling. Then would pace for bit before she went back to running. Screeching at the top of her lungs. Smacking her head. Smacking people. Pulling on peoples sleaves. Slapping her hand against the table. Just overly excited. (All of this happened in a restaurant. believe it or not. ha ha.)Hours later. Seizure happens. We're lucky we live in a town with a high population of autism and mostly everybody knows her cuz we go the same places over and over and over again. Everything with her is repetitive. So even if people don't know what autism is they soon find out when we show up every week at the same time. Same day. Same area. Sometimes even same seats. Ha ha.

One time she screamed for at least 15 minutes no breathing inbetween.. Threw everything off the tables, walls. Just a huge tantrum with stomping and hitting things. Then a seizure happens. I watched her literally walk to the corner of the room out of nowhere. Goes into screaming fits. Then whining fits. Never cries though. Just a a combination of screaming and whining. Then she will start giggling. Then back to screaming and whining. It's is horrible to say but she almost looks possessed. But no other way to explain it. And after a bit she snaps out of it and goes on with her day. According to her neurologist those episodes of her going into fast mood swings could be silent seizures. Misfiring of the brain basically. Idk something maybe you want to look into. Hope she feels better. The holidays are closing in so maybe she's also reacting to change or scenery? Either way. Hope things work out. Wish I could help more. Have you ever heard of a woman Kim Stagliano? She has 3 daughters with autism and I go to her for advice every now and then since she's a huge advocate and has written a couple books too.

Mary Leonhardt said...

There's a kindle edition of her book available on
Amazon: All I Can Handle: I'm No Mother Teresa: A Life Raising Three Daughters with Autism by Kim Stagliano. Here's the link http://www.amazon.com/All-Can-Handle-Mother-Teresa-ebook/dp/B004UI0ZGM/ref=sr_1_3?s=books&ie=UTF8&qid=1386694725&sr=1-3&keywords=kim+stagliano

I just downloaded it, as the online sample looked good.

Age said...
This comment has been removed by the author.
Donna Williams said...

autism and hypoventilation http://blog.donnawilliams.net/2014/06/19/autism-and-late-onset-hypoventilation-syndrome/