Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.

Warning! No Silver Lining!

If you like to read heartwarming accounts, or tales of positive action and good results and special moments, you might want to skip this entry.  I'm sure I'll get back to that, but for now, I haven't got that in me.

I wrote optimistically on Friday about trying a new way to deal with Janey's screaming.  I felt enthused, and we saw some early good results from ignoring the screaming.  I woke Saturday determined to work on that method.  However, Janey didn't have the same determination.

We all can ignore screaming.  But Janey doesn't like to be ignored, and so as soon as she figured out what game we were playing, she upped her own game a notch.  We can ignore screaming, but it's a lot harder to ignore screaming when it's combined with grabbing various objects and flinging them around violently, or with biting her own arm so hard it leaves marks, or with smashing into her brother as hard as she can, repeatedly, or with taking any liquid that is available and spilling it on the ground.  Or even just sticking to the basic screaming, but keeping it up at incredibly loud volumes for an hour, to the point that one gets quite concerned that anyone hearing her would assume she's being horribly injured.  Or when, if you attempt to take her in the car to diffuse things, she rolls down the windows, throws things out the windows, thrashes around so much it's impossible to drive, hits anyone in the back seat with her and makes so much noise that passerbys are startled.  Or turns off the TV or computer someone is trying to watch, over and over and over and over.  Or strips off her clothes literally hundreds of times a day.  That was yesterday.

There were little, tiny moments in between the horrible moments when Janey appeared perfectly calm and happy, when she sang or played outside or was sweet to us.  But it's hard to relax and enjoy that when any hug can suddenly turn into fury, when from one second to the next happy talk can become deranged sounding screaming.

When Janey is like this, it's not living.  It's surviving.  We are shell-shocked.  We look at each other and just wonder how we will make it to night.  And when we slip and let ourselves think about the future---there doesn't feel like a future.  There is no end in sight, ever.  There is only Janey getting bigger, getting to the point where she will be stronger and we will be weaker.

I'm not going to put a silver lining here.  I am going to say that it isn't always like this.  If you read back in this blog, sometimes there are weeks or even months when Janey is delightful, wonderful, when the fact that she is autistic and intellectually disabled is not a big deal, because she is simply Janey and we are delighting in the Janey she is.  I have hope that she will cycle back to that.  That is how we do it, when people ask us how we do it.  We hope.

Trying something new to combat screaming

This past week, Janey's screaming has become a huge issue.  Every single time she feels the slightest bit angry, sad, annoyed, impatient or any kind of emotion except completely happy, she has been screaming.  And it's a loud, eye-shattering intense scream.  The kind of scream that is literally dangerous when you are driving, the kind of scream that wakes up sleeping people and scares the cats, the kind of scream that can quickly drive you to despair.  Yesterday afternoon and evening was the worst.  She screamed over and over and over.  She kept asking for videos, and then the minute they were on, if they weren't exactly what she had in mind, or if they weren't at the beginning, or if she had just changed her mind, she'd scream.  She would ask for food, and if we weren't magically able to make it appear instantly before her---you guessed it, a loud, loud scream.  She finally got to sleep, only to wake at 2 and stay up for hours, displeased with us and letting it be known by screaming.  She had school this morning, and the minute she got home, she started the routine again.  By around 4, we were ready to flip out.

I'd been thinking for a few days about trying something new.  I have very, very rarely used ignoring as a technique for Janey.  This is because when a child isn't that verbal, it seems wrong to ignore a way they are communicating.  However, lately Janey's talking has improved a good deal.  I KNOW she can at least in a word or two tell us what makes her mad, or she can if she calms down enough to do it.  And by trying to do what she wanted to prevent the screaming, we were reinforcing the screaming.  This is something that even a year ago, I wouldn't have said.  I didn't think then that Janey was capable of making that kind of connection.  But I am realizing Janey is progressing, and she understands more than she used to.  So I talked to Tony and the boys, and we decided to tell Janey that we were no longer going to answer her screaming.  If she screamed, we were just going to ignore it.

This sounds scarily close to what just a bit ago I wrote about not liking, the "use your words" phrase.  But I really feel there is a difference.  I know Janey can't always use her words.  But she can get across what she wants in many other ways.  She can hand us a movie.  She can lead us to food.  She can stomp her feet.  And most of the time, she can say enough so we know what she wants.  And of course, she can scream.  And if the screaming was a once in a while thing, a sign of truly being very upset, I wouldn't mind it.  But it was turning into her first line of communication, probably because it was working.  We were trying very hard to avoid it, so we were likely doing things quickly to make her happy.

We told Janey about our new screaming policy, in words we thought she'd understand, and then we did a series of roleplays, where Tony asked me for something, I said "not right now" and then Tony screamed, and I ignored him.  Then we did it over, with everything the same but his response being "I am VERY ANGRY at you!" after which I answered "I'm glad you told me that!  It's still going to take a minute to get you what you want, but it's great to know how you feel!"  We overacted heavily, and switched roles around.  Janey watched in delight.

It only took a few minutes for the first scream to come along, and we ignored it---that first time, also saying that out loud "We are ignoring screaming today!"  Janey's scream turned to a happy look.  I think she was testing us.  And she then said loudly "I want BACON!" Luckily, we had bacon, and Tony made it for her.  The last few hours have been quite free of screaming.

I have NO illusions this has solved the screaming problem.  I'm sure it will be back.  But it felt very good to decide on a way to handle it, discuss the way and be in agreement.  It made us all feel a little less desperate.  Of course, we will stay near her if she is screaming out of control.  We always stay near her.  And of course there would be exceptions if she got herself into a state where she couldn't talk or communicate otherwise.  But the whole thing is an illustration that Janey IS making progress.  She IS understanding more.  Or at least I hope she is.  We'll see how the weekend goes.

The Storms and the Calm

Janey is having a rough night tonight.  Every half hour or so, she is screaming, that deafening scream that is fairly new, that is the alternative to the daylong crying it seems to have mostly replaced.  The crying was sad, but the screaming is angry, furious, and we are never sure why.

Much of the summer has been terrific so far.  Janey is talking better than ever, although we hold our breath about that, because her talking ebbs and flows.  But she is saying many more complete sentences---where she used to say something like "purple!" now she'll say "I want some purple ice cream, please!" or if I say "Maybe we'll go to the grocery store after school" she'll say "After school we might go to the store!" turning what I said around a little.  These kinds of sentences are still rare, but not shockingly rare any more, at least over the last month.  The other day, Tony said "We'll have to try to find Uncle Pino at the store" and Janey said "I know where she is!"  mixing up the pronoun, but delightfully responsive!  This morning, she looked around for William, who is in Maine for a few days, and said "Worms!  Where are you?" (Worms being a nickname I sometimes call William)  It was great, both that she noticed he was gone and that she verbally expressed that.

However, the storms come on suddenly and severely.  We can be having a perfectly good day, and suddenly, Janey screams, bites her arm and gets hysterical.  It's scary.  It was like what Mother Nature did yesterday as I was driving to pick up Janey at school---an amazing heavy rain came on and within minutes, the streets were flooded and I was fearing for my life.  An hour later, there was barely evidence anything had happened.  That's Janey.

I am working on figuring out a cause for these storms.  Sometimes, I have a good idea.  After school today, I took Janey into the library.  We have a usual routine there---we pick up the books I have held at the desk.  I order books online to come to my branch library, and Janey knows that routine.  This time, however, there was a book I wanted that I knew was in the stack there, so Janey and I walked into the dark and a tiny bit creepy stacks to get it.  She was okay at first, but when we got back to the desk to then get the held books, she lost it.  I had messed everything up.  She screamed her piercing scream, and I was glad that we were in a place we've been often before, so at least the workers, if not particularly sympathetic, at least knew Janey and had seen her in such action a few times before.  I did my patter, saying to Janey "We did something different, didn't we?  Mama should have told you ahead of time we were going to do that" and Janey screamed "Mama SHOULD HAVE TOLD YOU!"  I am not sure if that was echolalia or her true feelings, but I should have.  Other times, though, I have no idea what caused the storm.  I try to work like a detective, and sometimes do come up with a theory.  I've figured out any mention of dogs, even if the dogs aren't shown, sets her off.  She is truly terrified of them, and hearing a distant bark, one I might not even much notice, can be a problem.  Sometimes, though, even my best guesses and detection come up with nothing.  I figure Janey is thinking about or remembering something upsetting at those times, or has something stuck in her head, or has a pain someplace, or who knows what.

I feel like we are in a transitional period with Janey.  I am seeing her mature a lot this summer, but maturing doesn't necessarily being getting more mainstream.  It means she is becoming more aware of the world, and that might be a very tough thing for a girl that sees she doesn't quite fit in it, a girl with fears and thoughts and routines and ideas that are hard for her to express.  I think we are in for a lot of flash floods, hopefully often followed by the brightness of a world after the storm.

"That's the sad part"

In the car, or during one of the many times a day she wants me to "snuggle on Mama's bed", I often recite nursery rhymes to Janey.  Janey likes to hear them, and frankly, it's sometimes just to keep me alert and not falling asleep, as she can be a poor conversationalist at times.  We've been doing this a lot lately, and the other day, I was reciting "Sing a Song of Sixpence" to her (you probably know it, but if you don't, it's here) and she was singing it back and happy.  Suddenly, though, she wasn't.  She started screaming one line of it---"And down came a blackbird and snipped off her nose!"  Which, if taken in isolation, certainly is a little bit of a disturbing line, but Janey had never particularly noticed it before.  I immediately started my patter "that part is VERY PRETEND!  Birds NEVER snip off people's noses!  That's a very silly part!  It's not true at all!"  Janey started reciting this back, and then saying the whole rhyme, and while she screamed the snipping part, she didn't get too upset by it.  About the third time she said it, after that line, she said in a thoughtful voice "That's the sad part"  I was blown away.  I hadn't used the word sad, and I've never, ever known Janey to comment like that, on something abstract like a nursery rhyme.  I've never really heard her call anything sad on her own, although she'll say "I am sad!" when I ask if she is sad or angry, sometimes.

Of course, it set off a big wave of thinking on my part.  I wonder how much more Janey understands of stories or songs or poems.  Last summer, she got upset when she heard the song "He Stopped Loving Her Today" (this is the post about that)---that's the closest I can remember to this.  It makes me think that a lot of times, when Janey gets upset out of what seems like nowhere, it's not nowhere.  It's something she's just heard, or something she is thinking about or remembering.  We know she gets upset about tone of voice, if she thinks we are arguing or upset, and I know some videos upset her after a number of viewings, when she starts to understand them more, but I hadn't really thought she understood more abstract readings well enough to get upset.

I am thinking lately I underestimate Janey a lot.  I wish I didn't.  To someone reading, hearing about incidents like this, it might seem obvious she has a lot more ability to understand than I give her credit for.  But I write about the exceptional incidents.  There can be days and weeks and even months where Janey gives no sign of understanding things like that rhyme.  I read someplace recently about a mother saying she almost hopes her autistic child doesn't a mind that is hidden and secret, that is understanding everything, and I can get that.  Of course I wanted Janey to do all she can do, but it's heartbreaking to think that she might be in there getting all we say and everyone else says, bored by schoolwork that she has mastered mentally years ago, longing for me to read her some kind of complex literature, and that I'm failing her by not doing so.  I don't think that it's the case.  I think Janey does understand a lot, but I think these moments of extreme clarity are like the nights that somehow you can pull in very far away radio stations, because the conditions are just right.  The receiver is there, but so many other components are there too, a lot of which need to be lined up just right to have those rare moments of radio from far away (if you are interested in this hobby, called MW DXing or AM DXing, here's a Wikipedia article about it!)

So I am going to try to remember that it might be the rare day that Janey is receiving enough to be worried about a blackbird snipping off her nose, or someone stopping loving someone.  I want her to know that I will do everything in my power to keep the blackbirds at bay, and I will never, ever, ever stop loving her.

Deciphering Janey's Day

One of the most frustrating parts of having a child who is not really usefully verbal is never hearing about what she does when she isn't with me, firsthand anyway.  I adore hearing about my kids' days, but with Janey, the time we aren't together is usually a mystery to me.  I hold onto any tidbit I can get from teachers or paras or therapists, but the parts that are usually the best to hear about are the little incidental things, and it's also always telling what gets chosen to tell me by the boys.  You can guess a lot from what names you hear a lot and what classes are never described.  Janey, though, remains completely silent about her school days almost all the time.

This summer, though, she is saying a bit more on our rides home from summertime school.  It's not telling me about the day, but it's echolalia that I am pretty sure comes from school.  However, out of context, it creates puzzles that are near impossible to to solve, although it's fun to try.  Today, she kept yelling out "Roll the dice!  Okay, TWENTY FIVE CENTS!"  and at one point, "Have you got any chips?"  I'm assuming it was some kind of math game, and not that they were teaching the kids some low-level gambling.  I've also heard a name over and over---Elliott.  I was trying to figure out if he was a character on TV or a video, or a real live person.  That got solved today when I saw a little boy as I went to get Janey, sitting with her class, with an "Elliott" name tag.  That was pretty exciting to me---it was one of the first times I've heard from Janey about a child in her class that was a name I didn't already know.  I've heard quite a few quotes with his name is it..."Elliott!  Don't do that!  That's not funny!" (followed by Janey laughing her head off, as I guess to her it certainly WAS funny) and "Elliott!  Come back over here right now!"  I couldn't resist, as we were walking out, saying to Janey in that tone that comes from who knows where "Is Elliott your BOYFRIEND?"  If I were writing a book of parenting advice, I would certainly say not to tease kids that way, but hey, I'm human.  Janey is the 3rd child out of three I've found myself teasing about the opposite sex.

One of the most wonderful things teachers can do is to tell parents of special needs kids about what their kids do during the day.  I've been pretty lucky that way.  One thing I'm very conscious of at school is not asking for special treatment.  I know in the mornings and afternoons, teachers are getting lots of kids in and out of classrooms, and I try hard not to take up their time then asking questions.  But I hope other parents, and teachers, do understand that what they tell me or what I tell them is often the ONLY way communication goes back and forth, unless it's something written down.  Just a few times, I've gone to school different years and found every other kid wearing some special thing for some special day, or I've found out after the fact that a party date had been changed and Janey hadn't brought what she should have brought for it, or that an afterschool activity had been cancelled.  This happens very rarely, but even the few times felt tough for me.  Probably not for Janey, but when you have a child with special needs, you especially want them to be wearing silly clothes if that is what the day features, or to have a treat to give out if everyone else does, or so on.  Sometimes, a child's special needs creates special needs for the parents, specifically, a special need for communication.  Janey's teachers have used email more over the last few years, and I love that.  It can be read when there is time on both sides, it's there to refer to again if you need to---it's great!

One of my biggest dreams for Janey---that one day she'll actually, directly, tell me something about her day.  She'll say "We had music today" or "I played with my friend at recess".  I would love that so much.  Until then, I'll live for the little scraps she is starting to throw my way!

Janey being the bright spot

The last four days or so have been tough in a lot of ways.  Some weird thing is going on with the power in our section of the city, resulting in the last 3 nights out of 4 being completely without power, in the midst of a very hot spell.  It felt extra hot for me, as I was quite sick, with a high fever over the weekend and a throat that was bad enough so when I finally went to the doctor yesterday, her first words on looking at it were "Yikes!  Wow!"  In the midst of all this, somehow our washing machine stopped draining, resulting in a buildup of laundry to the sky, with no end in sight.  Yesterday, after a day when the power was on and off, and kept browning out, and finally went off once again, and then back on, and then they called to say it would be off all night, tiredness from sickness and sleepless nights caught up with me and I got into a weepy spell, just unable to snap out of it, despite firmly telling myself that all these were minor, first world type problems.

But what was the sunshine through all this?  My sweet Janey!  I can't think of four days of sweeter, easier behavior from her!  She has been, without a single qualification, a delight.  A smile has barely left her face, she's been saying cute things and showing a lot of understanding, she's gone along happily with anyplace we needed to go or anything we needed to do, she slept all night in the hot without a problem---she's been a joy.

Of course, with my overthinking mind, I'm trying to make a connection or a conclusion here.  One thought is that for years now, Janey and her issues have been our focus.  It makes me think to have a spell where other things were higher on my mind.  And I wonder if that has actually helped her some.  Not that we have been ignoring her---we can't.  But we haven't had the laser focus on her I think we often do.  This has coincided with her, for the first time, showing a little interest in being alone now and then.  She can't be totally alone, of course, but if we can see her and check on her every minute, she can be in the next room.  Lately she is often going into William's room when he isn't there and playing with the electronic keyboard he has set up, or sometimes just lying down on his bed and resting.  It feels like she is wanting that down time, away from us all.  Although I think a lot of people have the image of autistic kids wanting to be alone a lot, that has not been Janey.  She's an extrovert, like her brothers and father, and she likes to be around us, whether happy or sad, or she has up to this point.  It's made me happy to see a little of myself in her, as I am the queen of liking to be alone.  Maybe she is starting to need some space, mental and physical.

Things feel better today. I feel better, and the power is back on, hopefully to stay.  And hopefully, Janey will stay happy.  For one of the first times, I feel like she helped me get through some bad days, just by being her sweet self.  Thank you, Janey!