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Saturday, April 3, 2021

The Bison, The Scorpion and The Mystery

Janey watches certain videos on YouTube over and over and over and over. She has become very attached to my old decommissioned iPhone, and like many teenagers, has it by her side almost all the time. Her favorite video right now is a Cocomelon one, and if you don't know what Cocomelon is, you are lucky. Their videos feature a too good to be true family, especially the youngest, a strange looking toddler called JJ. JJ goes to an extremely fancy preschool---they go skiing, get tap dance in a studio, go on a submarine and learn to surf. In the video we hear all day every day, it's the Winter Show and Tell time, told about to a tune that is sort of like The Twelve Days of Christmas, but not exactly. JJ has forgotten his project, and his mother is going to bring it later. I wish I didn't know any of that. I am tortured by the video from start to finish. But I also generally believe in letting Janey pick on her own what she watches, and I've read much from others with autism saying that watching the same thing over and over can be very comforting. So...most of the time I just try to ignore it.

 One afternoon, however, I was at my wit's end. I took the iPhone and insisted on a break, and quickly, to try to keep Janey occupied, grabbed my laptop and looked for something she might like. I found for some reason an animal quiz, showing pictures of various animals to identify. The first one was a bison. I didn't think Janey would know what a bison was, and I was right. But what she called it was what really blew my mind. She looked at it for a minute and said "That's a scorpion" The bison in question had horns that folded back on themselves. Looked at close up, the horns looked exactly like the tail of a scorpion. 

 So many questions raced into my mind. How in the world did Janey know what a scorpion was? Why did she focus in on that part of the picture and make the connection? And how did she come up with the word "scorpion", when often she has a very hard time giving the correct name to the correct one of her two brothers, when her talking is so very limited, when she watches a mind-numbingly dull video hour after hour? How the heck does her mind work? What does it feel like to be her?

 I've wondered these things for many years, of course, but lately, it's hitting me more. A lot of it is the fear that Janey is bored out of her mind a lot of the time. It's not like we don't try to expand what she does. The house is full of books and toys, and I try very hard to engage her with them. We take her for multiple rides a day (the only other activity besides the videos she asked for much). We would jump on absolutely any interest she showed and go with it as far as we could. But she is hugely resistant to anything but the videos and car rides.

 It would almost be easier to think that her mind isn't full of knowledge. It truly bothers me to think of all she knows that never gets shown or used. I think about how I'd feel watching the same thing over and over, and I think I'd truly feel like I couldn't take it. I want Janey's life to be full and interesting. So what do I do? And why does it take what almost feels like a party trick to get Janey to let us know what she knows? We've figured out when she really wants a car ride, and we aren't ready to go, she'll answer almost anything we ask, somehow hoping that it's part of the routine to get us going. We don't say that, and we would never force her to answer questions to get to do something she wanted, but still, it can be interesting. Today, in that situation, she gave her phone number, her address, her full name, and when we asked "What planet do we live on?" she confidently answered "Jupiter!" How does she know that's a planet? How is she able to easily recite a 10 digit phone number but not always her name? How can I help her use her intelligence and knowledge to have a life with more variety? What can I do? What does she WANT me to do?

 I'm mostly ignoring Autism Awareness or Acceptance or whatever month. I am as aware of autism as I can be, and I fully accept Janey's autism, and I can't do much about anyone else but myself. But what I really want is to UNDERSTAND Janey. What is her mind like? I wish that there were more studies of kids like Janey, not just those kids with autism that can speak for themselves. I think it's vitally important that Janey and her peers, those with severe autism, with non-verbal or low verbal autism, be understood, that we know how they think so we can help them live their best lives. It means more than anything to me to be able to give Janey the best life possible, but in so many ways, after all these years, she's still a mystery to me.

Saturday, February 20, 2021

Cabin fever for a year

 I woke up this morning and thought "Great---another day".  That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough.  And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.

Janey hasn't been happy.  School is complicated and off and on, but hopefully she'll be going more regularly soon.  However, this past week was vacation week.  Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?"  In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible.  Janey is bored.  She has had a life that's been incredibly limited for the past year.  We all have, but she has far less resources to keep herself happy and entertained.  She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row.  We try, of course.  But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger. 

The list of what Janey likes to do at home is very, very limited.  She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed.  Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help. 

Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her.  We are supposed to stay there for about 30 seconds, then she has us get up.  About 5 minutes later, she gets up herself and it all gets repeated.  If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse.  If we refuse all day, it lasts all day.  Needless to say, we give in after a while.  It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual.  

Car rides---her favorite thing on earth.  Every morning, from the second she wakes up, she asks for a car ride.  She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on".  We explain, as patiently as possible, why a car ride can't happen that very second.  Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted.  No reason works, of course.  If she wants a car ride, she wants a car ride.  The car rides are rides to nowhere, rides around routes Tony has figured out over the years.  They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!"  In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.

Eating---Janey loves to eat.  Luckily, Tony loves to cook, and he's wonderful with her eating.  She eats a great variety of foods, mostly healthy. But her greatest love is salami.  She eats salami completely without a stop button.  We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey.  But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.

And TV watching.  Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4.  We know them both by heart.  We are so tired of them we can barely take it.  Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less.  If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.

A pretty good movie, but boy, are we sick of it

We try hard to make Janey's life more interesting.  We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor.  We can, with much trial, get her to do these things for maybe two or three minutes.  Then she is done, and nothing on earth can make her do them longer.  

In normal times, we are able to mix things up.  There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic.  But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her.  I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.

The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter.  But the truth is---we are not doing well.  We are really not doing well.  We are a mixture of bored and frustrated and tired and concerned and overwhelmed.  This feels endless, and at times, impossible.

Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going.  People doing whatever needs to be done to get this mess under control will be a help.  But I feel for the long term consequences.  I fear for all the Janeys in the world.  I fear that it will take many years to recover from this horrible year.  I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't.  I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.




Sunday, January 24, 2021

All the tough decisions---autism life in a COVID world

As the months go by and we are still living in this endless COVID bad dream, I suspect all of us living lives affected by autism are starting to feel the strain increase.  It's not at all easy for anyone, but for kids like Janey, and families like ours and so many of yours, it's a special kind of tough.

Starting with the new year, it seemed, Janey got more challenging.  We all did.  It's been a long, long haul, and it's winter, and the cases were increasing, and we all had been stuck together as a family for far longer than is mentally healthy.  The biggest issue was sleep.  Janey's sleep started a pattern of one night okay, one night with either a very late going to sleep time or a very early waking up time, and then one night of absolutely no sleep.  And although we did our bests to catnap while she was awake, or to sleep well on the nights she did, that kind of sleep cycle...wow.  We were snapping at each other, constantly tense, really not doing well.  

Janey, in trying to cope, I think, was developing some quite repetitive routines.  One was watching Toy Story 4, and sometimes Toy Story 2, over and over and over.  The other shows and movies she used to like weren't being watched at all.  And not even all of the two Toy Stories were, just certain scenes, repeated time after time.  And while watching them, Janey would laugh, that laugh I think you all know, an insane sounding loud almost humorless laugh, a fake kind of high decibel laugh.  The nights she stayed awake all night would feature that laugh off and on for hours up on hours.

We kept trying, as we have been, to do school at home.  We do the morning meeting, at 8, for which Janey showed varying levels of engagement, and then video lessons such as books with a theme for the week or lessons like a great one her teachers have developed about body awareness and pain.  When we can catch her in the right mood, she'll listen with interest and answer questions, but other times, she simply screams at the top of her lungs at the very mention of the classes.  We resorted to making the lessons a requirement before car rides or other fun times.  That's not how I want school to be for her, some kind of chore.  And that's never how it has been.  None of this is the fault of her teachers, who are doing a hero's job of it all in the midst of impossible challenges.  It's that remote learning is not how Janey learns, and I don't think it ever will be.

With all this, we decided after huge family debate to request that Janey go back to school, which supposedly was available for kids of her level of disability.  We had turned down what was called the hybrid model of learning before, where she would have been able to go to school 4 days a week.  I thought this was a reversible decision, and that by requesting she switch out of remote, she'd be quickly able to return to school.  Well, I should have known better, as in one of the hugely contrasts that exist, the difference between the fantastic teachers in Boston and the (I won't use some of the words I'd like to use here) middle and upper level central administration of Boston, the admin people showed their colors again, and it seemed somehow either impossible or incredibly complicated to switch her model.  Meanwhile, somehow there was supposed to be a switch for most special needs kids to in person on February 1st, but in one of the many conflicting and complicated emails I got, we were told since Janey was in the highest needs level and we had before requested remote learning for her, now that those with less severe needs were going to be able to go back, our previous decision to be remote had to stand, unless we did some complicated other form and (presumably) prayed it worked.  If you are confused, so am I.

However, Janey's teacher and I had the idea that perhaps Janey could go to school for one day, or one day a week, for state testing she had to have.  Even just one day was such a thrill for all of us to think of.  So a week ago Thursday, Janey went to school for a day.  She had a wonderful day.  We had a wonderful day at home.  The effects of that one day, even, last for days and days---better sleep, better toilet use, better moods, and Tony and I, after 10 full months of absolutely zero respite, had about 4 hours to ourselves between driving her in and picking her up.

Part of the day at school was a COVID test.  Janey wasn't excited about the prospect, and resisted at first, but her teacher told her that after the nurse "tickled her nose", she could have a lot of salami.  Brilliant!  She gave Janey a minute, asked her if she was ready, Janey said yes, and the test was taken successfully.

That first week's test was negative. We took Janey to school again last Thursday, so happily.  I especially needed a break.  Midweek I had developed diverticulitis for the third time in three years, with a fever and lots of pain, and a remote appointment and antibiotics and warnings of what signs to go to the ER immediately if I got.  Janey was tested again that day.

Saturday morning Janey's teacher called us to say that the pooled test, where Janey and one other child's COVID tests were combined together and tested, were positive.  Either Janey had COVID, or the other child did, or both of them did.  The school nurse called me a few minutes later (her teacher called me first to tell me in person, which I so much appreciated)  She went over the next steps, which was to get Janey her own COVID test.  

We are getting Janey's test today.  And I'll just note here, when mayors and governors and so on urge testing, well, could they make it a little damn easier to get a test, even in a situation like this where there is more than just an exposure, where there is a 50% chance Janey has the virus?  Can they make it so you don't have to call around for hours and EXPLAIN to the nurse you finally talk to what pooled testing even is, and hear her say "I've never heard of that! That's stupid!  I don't understand why they would do that!" and then act like saying Janey could get a test is some kind of huge favor, and then asking me "Will she even cooperate with the test?"  

Janey has a few mild symptoms which might or might not be significant.  A few nights ago she was coughing a bit, and she had some diarrhea, which is rare for her.  But yesterday and today she seems perfectly healthy and happy.  And thankfully, the rest of us don't show any signs so far.  But still, of course, we have to quarantine, and in fact, the whole high school is going to have to go fully remote (although only about 20 kids weren't remote)  So, for now, our plans of having Janey go to school in person again are at the very least on hold for a while.

I don't have a strong conclusion here.  Were we wrong to send Janey in for those two days?  My older son strongly, strongly feels we were, and maybe he's right.  But as I told him, he hadn't been up night after night with Janey.  He wasn't the one responsible for keeping her together day after week after month, or for trying to get her to access an education in a way she didn't want to and couldn't seem to, she wasn't the one without one second of respite from a very high needs child for literally almost a year.  We want Janey to learn, to be with friends, to have fun, to get the benefits of the wonderful teachers and aides and therapists that are there for her.  But of course we also want to be well.  And you can't really be mad at a virus.  It's doing what all of us are doing---trying to stay alive and go on.  

I'll try to keep this blog updated on Janey's test results.  I hope you all are hanging in there.  Please know you aren't alone during these long months.  There's a lot of us out there living this life.  Whatever decisions you make about schooling, know that you are doing the best you can in your situation.  And join me in hoping that a year from now, this will be part of history.  Please.

Saturday, December 19, 2020

"Listen to my mouth!"

Janey overall was having a fantastic day yesterday. She was cheerful and upbeat and fun, loving listening to Christmas music with me and having a car ride with Daddy after a day too snowy for a ride the day before. We were enjoying her company so much. Then, as happens, something changed. She started crying, screaming, freaking out over everything. We had no idea what was going on. I snuggled with her on her bed and tried talking about it, asking the same old questions I'm sure she's sick of---"What's wrong? Why are you sad? Does something hurt? How can I help?" She didn't answer. William came in the room and I asked again what was wrong, and somehow the combination of him being there and my asking seemed to bother her a lot, and she hit me hard. I stayed calm, told her that I didn't like being hit, told her I wasn't going to stay snuggling with someone who was hitting me, got up and walked away. She screamed and screamed and screamed.

 After a little while, when I'd gotten her to say she was sorry (with much prompting, and who knows why I ever bother, because I don't think she means it, but I need to have her say it), I went back to snuggling her. She then looked at me intently, stared in my eyes with a look that was unusual for her, and said, twice in a row "Listen to my mouth!" I don't know what it meant. I really don't. I don't think it meant to listen to what she was saying. Maybe it did. But she usually doesn't use language like that, in a slightly indirect way. And she wasn't saying anything about why she was upset. But it meant something. She took the effort to say it, and you could see it was an effort. I stayed up a long time in the night, trying to figure it out. It finally came to me that it might be related to what doctors say "I'm going to listen to your lungs now. I'm going to listen to your heart" I don't think she could pull up the words "lung" or "heart", and she might have been saying something in her mouth hurt and she wanted e to see that, or that she just felt sick and wanted help from a doctor. But she doesn't seem sick, doesn't have a fever, doesn't have low oxygen. In this COVID times, taking her to the doctor when she doens't seem sick is not really a good balance of safety and health. 

 The whole thing brought out so many issues. Why does she get upset out of the blue? Why is it so hard for her to tell us what is wrong? Why does she hit once in a while? What do mysterious phrases she says to us mean?

 The hitting seems like her way to say she's really, really seriously not liking something. She doesn't do it often at all now, and when she does, it doesn't have the feel of something spontaneous. It feels like a planned thing, at least planned a few seconds in advance. The last time she really hit me was when we were trying hard to do Zoom classes, and I told her it was time for one. I think last night she was telling me she really didn't like my endless questions. Of course, hitting is not at all the way I want her to communicate, and I need her to know that, but I also need to listen to what issues are upsetting enough for her that she feels she has to hit. 

 The "listen to my mouth"---phrases like that are about as frequent as hitting, not very frequent at all. You can tell she thinks about them before saying them. The way she looked at me was very striking. I could tell she really wanted me to pay attention. And it makes me feel awful that I wasn't able to quite get her message.

 It's frustrating so often, figuring out Janey's needs. I don't want her to be unhappy, but of course, like all of us, sometimes she's going to be unhappy. But it's so hard not knowing why she's unhappy. Was she just sick of being around me? Did she think about something upsetting? Did something hurt? Was it just too long a day, and she was tired? It's hard dealing with this, but of course I'm sure it's a million times harder for Janey, being so upset but so unable to explain why, doing her best to let me know in the way she can but not having me get it. Janey, I will try to listen to your mouth, and your heart, and your mind, and all of us. I am trying hard.

Tuesday, December 8, 2020

Finding words when you need them

 I missed a day of my aimed for week of new blog posts, but that's life in our household!  The best laid plans of mice and men...

I think constantly about Janey's speech and its oddities.  I was thinking for a long time that the main issue she has is with word retrieval.  The words are up there, in her head, but she just can't find them when she needs them.  Lately I've refined that in my mind.  She can retrieve them under certain circumstances, but not in conversations, or in casual remarks or questions.

Janey in a top featuring one of her favorite Christmas songs.

For example, as I've written about before, Janey can show a remarkable vocabulary under very specific conditions.  The best way to have her show it is, when she's in a good mood, to show her flash cards or point to pictures in a book.  If we do this rapidly, without saying anything but "What's this?", she can name pretty much anything you could imagine.  She'll name things we have no clue she'd know, like "iguana" or "moat" or "treasure chest"  I think this might be a bit like Rapid Prompting.  The key seems to be that you aren't asking ABOUT the words, and you aren't putting any other demands on her at the same time as asking her to name the words---not any social demands or extraneous comments or anything.  

Sometimes it also works to ask her a series of questions, as long as they aren't about what she wants to do or how she feels, but more just information questions.  For example, one night she wanted to go for a car ride, and I told her we couldn't because Tony was busy.  I said "What is Daddy watching?" and she answered quickly "The Patriots!" and I said "What do the Patriots play?" and quick as a flash she said "Football!"  I was very surprised at both answers.  I had no idea she knew the name of the team or what they played.  But it was up there in her brain.

Another clue to how Janey's speech is organized in her brain is the kind of mistakes she makes.  One morning, I was helping her put on some Santa socks.  I asked her who the socks showed.  She answered, after a little pause, "Christmas!"  I think there's categories she stores, and when she can't get the right word out the category, she gives the category name.  This might be a part of her most common response, when she wants help putting on a TV show, and we ask her "What show do you want?" and she says "This one!"  We are asking her for the specific show, and she is answering with a category, the category of all TV shows, because coming up with the name of the certain show is not something she can do right then.

Janey doesn't talk conversationally, without extreme prompting, not ever.  Her speech just doesn't seem to work that way.  She never says to us "How are you?" or "What are you doing?" or "Where are we going?"  She never responds spontaneously to questions like "How are you?"  She might say "I am fine!" if that's something she's been taught, but she'll never, ever just answer with a casual, on the spot answer.  That is why I think she just doesn't have access to her vocabulary in that context.  The words might as well not be stored at all, for how much she can use them in conversation.

I wish there was more written about how what's sometimes called "low-verbal" kids with autism talk.  It's pretty fascinating to me.  I've read a lot of science for laymen type books about how people learn to talk in general, such as "The Language Instinct" by Stephen Pinker, and I think a study of someone with a language disorder such as Janey has could help understand how words are stored in the brain. 

One very interesting fact I've read a lot about is how sometimes people lose the ability to talk but keep the ability to sing.  Janey's access to songs in her head is far better than her access to words.  She will often start singing spontaneously, in a way she never does with talking, and this doesn't seem scripted.  It just seems like a desire to sing a song, which we all have sometimes.

I would love to know how to better help Janey use the words she knows.  Janey's had lots of speech therapy, but I don't think it's ever addressed her specific issues with retrieving words for conversational speech, and maybe there is no way to teach that.  It's tough, because you can try to help her answer things, but in doing so, you almost always have to give an example, and that example becomes a script, and usually gets turned around in terms of pronouns.  You can say "How are you feeling?" and wait for answer, but when you don't get one, how do you show her how to answer?  If you say "I feel fine!", she doesn't seem to pick up on that as an example of how she can talk. So we'll say "Can you say 'I feel fine'"?  And she'll say the whole thing back "Can you say I feel fine?"  Or if we ask "Do you want to go for a car ride?", she comes to see that as a way to ask for a car ride, and we get the whole phrase "Do you want to go for a car ride?" to ask for a car ride.

Many days pass with Janey only saying three or four different things.  Her mainstays are "I need help!", "Want to go for a car ride?", "Want salami?" (sometimes substituting other foods there) and "Cuddle on Mama's bed?" (which means she wants us to cuddle on her bed---at some point wanting Mama to cuddle her got mixed in with the bed part and turned it into that combination)  That, along with "yes" and "no" and the always versatile scream are the core of her talking.

I'd love to hear from other parents of minimally verbal girls, and from those who communicate non-verbally as well as those who talk more freely.  Communication in autism is fascinating (and frustrating)




Sunday, December 6, 2020

What drives us up a wall

After many years of this autism parenting gig, we can be pretty unfazed by most behaviors Janey shows.  We get the reasons behind them, more and more, we understand they are ways for her to communicate, or sometimes, we know they are just teenage behaviors, not autism behaviors, and we try not to take them personally.  But we are human beings, as all of us are, and there are still things that Janey does that are highly trying, to say the least.  Here's some of them...

Screaming

When Janey is very displeased, she screams.  If you've never heard her scream, you probably will have a hard time picturing just how loud it is.  I'm pretty unbothered by most loud noises, but when she screams right in my ear, it's painful.  She screams so loud that I'm very sure people on the sidewalk and perhaps even people in other states can hear her.  It's an incredible scream, and nothing we say or do seems to stop it.  I think she's figured out it's a weapon---something she can do that we can't do a thing about that certainly gets our attention.

"I need help!"

Of course, if Janey really needs help, we are happy to help her.  But usually, this "I need help!" doesn't really mean she needs help.  It means she wants us to stop whatever we are doing and participate in a ritual she wants performed.  Often, it's changing a TV show.  If she really couldn't change the shows, that would be one thing.  However, she can change shows with complete ease now when she wants to.  The other night, as Tony dozed and I watched from the other room, Janey switched shows around for hours, going from one streaming service to another, switching the TV into internet mode and back, rewinding and fast forwarding, changing shows probably a hundred times.  When I came into the room, though, suddenly she needed help doing the most basic TV action.  I get it...she wants or needs attention, or she somehow can't access the part of her brain that knows how to make the changes.  But that doesn't make it less irritating at times, especially when we hear the "I need help!" phrase every minute for hours and hours.

"You've helped me, now go away!"

This comes up most when Janey asks us to snuggle her on her bed.  What this means is for us to cover her with her comforter, get her pillow (the comforter and pillow are always thrown onto the floor by her when not in immediate use, no matter what), lie down with her for a millisecond, and then..."want to go away?"  Once we've done our part, we are no longer supposed to be there.  Which I get---a 16 year old girl doesn't want her parents around all the time.  But after a few minutes on her bed, Janey will get up, watch a little TV or eat a bit, and then want, once again, to snuggle on the bed.  And we are supposed to, again, lie down with her for a second and then go away.  Often, this happens after a night when she didn't sleep.  Once we get on her bed, we want nothing more than to just close our eyes for a minute and rest, but no---we must hop back up and wait for the next summons to lie down.  If we refuse the routine, which we often try to do, the scream comes out, Janey is in a mood probably for the rest of the day, she makes the demand far more often...it's usually just not worth it.

"Go for a car ride?"

Janey's favorite thing on earth is going for a car ride with Tony, a car ride usually to nowhere, just a ride around listening to music.  Tony takes her for rides like this two to three times a day, every single day.  The rides are around an hour each.  So she gets LOTS of car ride time.  But it's never enough. Often, the minute they are back in the driveway, Janey immediately says "Go for a car ride?"  There's no credit for the car ride just completed.  And the car ride requests are not changed by weather conditions, the fact it's the middle of the night, or even the rare occasions when Tony has taken the car elsewhere and there is literally no car to have a ride in.  And like the other requests, us saying no brings on, always, a predictable series of reactions---screaming, arm biting, sometimes throwing things or smashing her fist into things.

"Music please, music!"

Janey loves music.  She always has.  But she doesn't just like any music.  She has very specific tastes, tastes that change from time to time.  Like any of us, she gets sick of certain songs after a while, or discovers something new, or just wants something different.  Unlike the rest of us, she often isn't able to tell us just what it is she wants.  This comes up the most in the car, and affects Tony far more than me.  Tony will be playing Sirius Radio, or Accuradio, or music he has on a thumb drive, and Janey won't like the song that's on, and she'll say "music please, music!" which means "change the song"  If Tony doesn't immediately comply, she repeats the phrase, much louder.  If he doesn't comply after that, she will kick his seat, scream, generally freak out.  Some days, she's listen happily for a long time to whatever comes on (and Tony does his level best to play playlists she likes---her favorite by far is any British Invasion music), but other days, the "music please" is continuous, stopping songs after just a second or two, over and over and over.  I think that's when she wants a certain song, but can't express it.  So she just hopes it comes up, and of course, with many thousands of songs out there, it's not likely to.  We've tried having her control the music via smart phone, but she won't do it.  It's Daddy's job.

There's more I could add to this list, but those are the big ones.  And thinking about them, they are much more annoyances than things that used to happen.  For the most part, she doesn't lash out at us or herself like she used to.  There can be hours and sometimes days when she's perfectly happy, and none of these behaviors show up.  But I'm not going say it's easy.  I'm not going to lie.  It's still tough, in a lot of ways, being Janey's parents, and tougher this year than ever before, without school as a respite for us and a change of scenery for her.  

I'd be so interested to hear what would be on all of your What Drives Us Up A Wall lists!

Saturday, December 5, 2020

Communicating Pain

If I could make a wish and be able to have Janey freely and easily talk about one subject only, that subject would be pain.  I wish so much she could tell us when she is in pain, and where the pain is, and how bad it is.  Not being able to do so almost cost her her life, when her appendix burst, but pain far less critical to know about than that still is something I would very much like to be able to have her tell me about.

Yesterday, Janey said "Do you want a band-aid?  Do your legs hurt?"  That was about as clear as her pain talk gets---in her trademark Jeopardy style form of a question talking.  She has her period, something that has only happened a few times without medication bringing it on, and I was able to figure out that was most likely cramps she was feeling.  I'm glad she could tell me that much, but there was so much more I wished to talk to her about---to ask her how bad the cramps were, to see if the Motrin we gave her helped, to ask if anything else hurt.  Today she was just cranky all day, and we were pretty sure she was feeling cramps again, and gave her Motrin again, but we could have been way off.  Maybe she was just bored, or upset about something else.

I try to imagine how it would be to not be able to describe pain, or understand why I was feeling it.  I think especially about headaches.  I get those a lot, and I wonder if Janey does too.  I wonder if a lot of the days she's just off, just upset, her head is hurting, and she doesn't know how to tell us that.  If I ask her, she generally just repeats when I've said---I say "Does your head hurt?" and she says back "Does your head hurt!"  I wonder how often she's had a stubbed toe or a stomachache or a sore throat and we had no clue.  I think she thinks we know what she is thinking, and I so hope she doesn't think we just ignore the pain she's feeling.

Of course we have tried AAC apps to communicate about pain.  And like most everything else with them, we've had very little success.  Either she pushes them away, or she chooses the middle button of each screen every time.  Or she picks a word she likes the sound of and picks it over and over, mainly "Grampa".  She knows how to get to that word on every app we've tried, and that shows us she can manipulate the screens when she wants to, but she doesn't want to, or at least she isn't able to do it consistently.  

I work hard on giving Janey the words she needs to describe pain, but I worry about putting words in her mouth.  Yesterday I kept saying "You have cramps", but of course, I don't know for sure she did.  I'm working too on taking her temperature by mouth, to have another way to judge illness. We had a forehead thermometer, but I never trusted it to be accurate. She will now hold the thermometer under her mouth for a minute or so.  I also check her oxygen with a little home meter now and then, just to get her used to medical checks.

I read the other day about a teen with autism who had COVID, whose parents weren't allowed to stay in the hospital with him.  That is the nightmare to me---that sometime Janey will be not with Tony or me, will be sick, and will be unable to explain what is wrong or understand what is happening.  That's the kind of thing that keeps me up nights.  I've seen the mixed bag that is medical care for those like Janey. There are those that are great at helping her and listening to us, like her current pediatrician or the surgical team at Mass General.  And there are those who were not, like her old pediatrician or the ER at Mass General.  In this pandemic time, I hope you are all well, but most especially your loved ones with autism.  The world, even the medical world, doesn't always understand that not everyone can speak up and say what hurts.