"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.

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)

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!

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.

Laundry leads to an interesting realization

 Starting about a month ago, I began taking Janey down to the cellar with me while I do laundry.  This was partly out of the desperation of looking for activities within the house we could do.  To keep Janey interested, I told her she was going to do the laundry all by herself.

Of course, I didn't really expect her to do the laundry, but that first time, I led her through the steps.  And as so often happens, she surprised the heck out of me.  First I told her we needed to clean the lint screen in the dryer.  She immediately pulled it out, cleared the lint, threw it away and put the screen back.  I think she had maybe seen me do that once, years before.  Then we took out the dry clothes, and she tossed them in the basket.  I put the wet clothes on the dryer door, and she pushed them all in.  Then I told her to close the door, which she did.  The door to the dryer always needs an extra push to stay closed, and she, without me telling her to, gave it that extra push.  Just to see what happened, I told her to turn the timer and turn on the dryer.  I had to help a little with the timer, although she knew right where it was and the direction to turn it.  I had to help not at all with turning the dryer on, even though that involves pushing on another dial that doesn't look like a button.

Then the wash---she tossed in the clothes I gave her.  I poured the detergent in the cap, and she confidently pulled out the detergent holder.  I gave her the cap and she poured the detergent in without spilling, and shut the lid.  I wasn't even that surprised when I told her to start the washer, which involves pushing two different buttons in the order.  Absolutely right, first try.

The whole laundry routine, along with other areas where I've lately been observing Janey's level of competence, has made me think a lot about something.  I was reading something a few weeks ago which mentioned a family with a child with intellectual disabilities.  Instinctively, I thought to myself "Wow.  That must be tough"  And then I realized what I thought.  Because, of course, our family falls into the same category as that family.  Or I would have said so, for many years.

I realized after that reading and thought that I no longer think of Janey as intellectually disabled.  I'm not living in a dream world.  I know that she would and has scored extremely low on IQ tests, that by any academic standard you threw at her, she is in the severely intellectually disabled category.  But that's not how I think of her.  I think of her as...well, Janey.  I think of her as a person with strengths and weakness.  I think of her, often, as a bit of a mystery.  I can't say what's in her head, but the little hints she gives us make me think there's much going on there, much we are not privy to.  

I'm not saying this to tell anyone else what they should think, about Janey or more, about their own children.  It took me 16 years to get to this way of thinking.  I would hear about and agree with the idea of assuming competence, but I didn't truly mentally buy into it. I don't know if I still would word what I feel just that way.  I would say more...we don't know.  We don't know what Janey knows, what she thinks, what she's capable.  But actually, when I think about it, that results in kind of the same thing.  We don't know what she can do, so we need to give her a chance to show us.  We need to keep in mind she's always watching us and listening to us.  She must have observed the heck out of me doing laundry, at the very least, and I'm quite sure there are hundreds of other routines and ideas and conversations she's much more aware of that is visible at first glance.  

I've got some more thoughts on this subject, and on other surprise ways Janey has shown us what she knows.  I'm still planning on a blog entry da day for this week, so stay tuned for more tomorrow!

Janey and remote learning

 Zoom meetings. Remote learning.  Those terms, in the future, when hopefully this COVID year is a memory and school once again means actually going to school, are going to send a shiver through me.

Remote learning just doesn't work well for Janey.  To be fair, sometimes in person learning doesn't work well either, but that's if we look at things from a strictly academic perspective.  In person learning has almost always worked in terms of helping Janey---making her happier, teaching her social skills, giving her life a purpose, keeping her active, and giving her time with some of the finest people I've ever known, her teachers and paras and therapists.  Remote learning can't replace school for her.  It probably can't for anyone, but for Janey, it's been a bit of a nightmare

What's hard about it for her?  The biggest challenge is just getting her to sit down and listen and engage with the computer.  I say "the computer" and not "her teachers" because I truly don't think she understands the people she sees on the screen are her teachers.  I think she sees it as some kind of video that talks back to her and makes demands on her that regular videos don't.   Unlike how she watches TV, it also requires her to stay in one place, to listen in order, to answer things.  When she watches a video, she moves around constantly, rewinds often, changes shows, turns things off and on.  No-one asks her questions.  It's her time.  Now, she's suddenly, in her eyes, being asked to watch videos that oddly feature people she knows in real life, and to watch them without constantly getting up, and without being able to stop and start and switch around.  It's not her cup of tea, to say the least.

At school, everyone learns pretty quickly there's some days that Janey is ready to engage and some days she isn't, and some times during each day she's more alert and other times you can't get a word out of her.  But remote learning is only at certain set times each day, and they often aren't her chosen times.  Her poor sleep lately means that sometimes it's time to do school when she's sleepy, or hyped up from not sleeping, or just not in the mood.  She's been doing fairly well each morning at 8 with the morning check-in, but that's only about 10 minutes.  Even that requires us to remind her over and over and over to stay at the screen.

There is also so much that can't be captured on a screen.  There's so many times Janey has answered a question when she's muted, or pointed to something on a screen when it's not a touch screen, or gave a response to something that was asked minutes ago.  In a classroom, that would be noticed, but when a teacher is trying to teach 5 or 6 kids like Janey at once, or even in one on one sessions when Janey is not positioned right in front of the screen or loud enough or clear enough, so much is missed.

A classroom is full of activity, things to look at, things to engage with.  A screen isn't.  The teachers have done their level best, but nobody was trained for this.  It's not something we ever anticipated.

So...what do we do?  I am not sure.  I know I've pretty much given up on remote learning.  Janey goes to the morning meeting, has music therapy once a week and once in a while watches recorded lessons, but I am not pushing a lot more.  When I did, it wasn't pretty.  Janey reverted to scarily tough behaviors.  We got the message.

I want Janey back in the classroom, IF that is safe.  It's looking more like it might be, from my reading.  I don't think COVID is spread much at schools.  COVID is hugely scary, something I would like our family to avoid getting at almost any cost, and I fully understand why schools closed.  And if science shows they need to stay closed---well, so be it.  Nothing is more important than staying alive, of course.  But I am now at the point that if school opens, and those with more knowledge than myself determine it's safe, even if no-one can say it's 100% safe, I'll send her.  Nothing is 100% safe, ever.

I wonder how other families are handling this, how remote learning works for your kids, what your schools are offering.  I'd love to hear from people around the US and around the world about your experiences.

Stay well!

Every day for a week

 I've been neglecting this blog lately.  Most of that is the whole pandemic related every day feeling the same bit.  It feels like nothing changes, like we are all just in a big holding pattern.  But thinking about it yesterday, I realized actually lots has been happening.  Being with Janey 24/7, we are every day learning more things about her and figuring out more ways to engage her, and understanding more how her mind works.  I've had a lot of thoughts I'd like to share, but I kept feeling like I had to wait to write until I tied them all together and had some perfectly worded way to sum them up.  When thinking about this last night, I realized I just need to write, to get back in the habit.  So bear with me as I start my week of blogs---a little each day!

I'll start with---how are we doing?  Okay.  We're doing, well, okay.  Like everyone else, we are tired of this whole bit, but hopeful that maybe a light at the end of the tunnel is starting to be visible. Janey hasn't been in school in person since March, not a day.  At one point she was offered a hybrid model, which would have resulted in the end in her having about 4 days total in school before it shut down again.  I sensed that the renewed shutdown was coming, and I just didn't think it was worth the risk to send her.  I'm glad I didn't.  Now only a very, very few kids in Boston are going to school, and Janey is not one of them.

Remote learning---well, that' s not easy with Janey.   Her teachers and therapists have been trying hard.  Janey now pretty much tolerates the morning meeting, which lasts about 10 minutes, starting at 8 o'clock.  She will sometimes watch recorded lessons, with varying amounts of interest.  I can get her now and then to do a little bit of work on paper, circling things or listening to short stories.  But it all adds up to vastly, vastly less school than actual school, probably about 1/100th as much.  And no real social contact, no special things like swimming or dance, no time away from her family.  When I think about her being 16, and how limited her life is----well, it's not great.

And from the perspective of Tony and me---that's tough too.  We have absolutely no time at all without fully caring for Janey.  School always gave us a bit of time to breath, to nap if necessary, to regroup.  Caring for Janey is a lot like caring for a toddler in an adult's body, day and night and day and night.  We are tired.  Janey's sleep hasn't been great, to say the least.  About once a week, she doesn't sleep at all, and maybe two more nights of the week, she sleeps very little.  We can kind of catnap while she's awake, but not fully sleep (and I must give a shoutout to Tony, who does the vast majority of the night caring) and Janey wakes us up often to get help with videos, ask for food, ask for car rides, all that.  We are hugely worn out.

But it all could be a lot worse.  None of us have gotten sick, thank goodness.  Janey will wear a mask to go to the grocery store, the one place we go, and Tony takes her there almost every day.  Except for when we were trying hard to recreate school at home, which caused a huge pushback from Janey and some very tough behaviors, she has been mostly cheerful, and often a very lot of fun to be with.  We are getting by.

I'll write a lot more in the week, about Janey's speech, about remote learning, about things I've discovered about how she learns, about music and car rides and siblings and so.  For now, I'm just sending out love to all of you, and hoping you are coping.  Let me know, so we can all support each other!