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)

My high school freshman

I thought I'd make good use of being up with Janey in the middle of the night to update a bit here!  I can't sleep lately either, so I don't really mind her being awake as much as I sometimes can.

How are things going, you might ask?  Quite well, really.  And I am knocking on wood all over the place saying that.

Janey started high school earlier this month.  I was VERY nervous about it.  She hadn't gone to a new school for many years, and the high school we picked is far away from our house.  But it had the program we wanted, as I've written about. And so far, so good!  The bus has been more reliable than it usually is, despite having to navigate all kinds of complicated Boston traffic and roads to get her to and from school.  We are getting good reports from her teacher, who although I haven't met him in person yet seems great.  We get a page each day, partly self-reported with stamps by Janey, telling us what activities she had, whether she ate much lunch or not, and whether it was a great day, a good day or a not so good day.  There's only been a couple not so good days!  Her teacher (sort of like her home room teacher, as she has several teachers and they rotate around the 4 or 5 connected rooms that are for her program of 40 kids) writes a little note every day and is great at being touch by email, and that makes me so happy.  I love knowing a bit about how Janey is doing each day.

She even has electives!  She didn't elect them, but they were well chosen.  She has dance almost every day, which is just a dream come true.  I've always wanted Janey to get more of a chance to dance.  She has Very Special Arts most days, which is music and art for special needs kids, and she swims several times a week.  Every Friday, there is some kind of outing.  We send in a little money for it.  She has gone to the corner store a few times, and this Friday to the Dollar Tree!  I love the idea of her getting out and about.

Janey has seemed happy at home most of the time since starting school, also.  Her main activity lately is what you might call close watching of two movies---"Coco" and "The Emperor's New Groove".  She watches them both at least once a day, and seems to have memorized them.  She remembers right where she left off if interrupted, and recites the scene she is about to see when she goes back to watch.  As with so many of the things Janey likes, we agree with her taste.  Coco is a fantastic movie, all about music and (this struck me the other day) the power of music to reach those who might not talk much, in this case the title character of the movie, Coco, who is the main character's great-grandmother, who has dementia.  The Emperor's New Groove is just plain funny, and Janey seems to appreciate the humor a lot.  As she got ready to watch it just now, she recited the beginning "I was the nicest guy on earth and they ruined my life for no reason!"  After school earlier, she spent about an hour with nothing on, no TV or music, happily reciting lines from the movies and singing song clips.  I love listening to her do that.  I know it's echolalia, but it's not the kind of echolalia she used to do more of, frantic and unable to stop sounding.  This echolalia is very varied, and seems to just be thinking aloud, a stream of consciousness recitation of what's in her head.  Every now and then, there's a line I think is from school.."Can you guys please come over to the kitchen?" or things like that.

A few weeks ago, my parents visited, and I could tell at one point Janey was in the exact rare mood to show my father something he hadn't seen before, Janey's flash card abilities.  I held up a big pile of picture flash cards, one after the other, and said "this is a...." and she named what was on the card.  ALL of the cards.  The few she got wrong were close guesses, like calling a fox a dog or a tiger a lion.  There were words in there I wasn't sure she knew at all, but she did.  My father was surprised and impressed.

I've been reading more about RPM (rapid prompting method) and it seems like what Janey will sometimes do with the flash cards is similar to what kids do in RPM sessions, from what I can see.  I have to ask rapidly what's on the cards, I have to move right away to the next one.  It almost feels like magic---the way to glimpse what is in Janey's mind that for whatever reason she can't usually tell me.  But it also seems to have the limitations I've heard several people mention about RPM.  It's not really a skill that carries over much into every day life, at least in terms of what Janey readily says.  The words she uses for the cards are not words that are really part of her limited regular vocabulary, and I am not sure how I can make them part of it.  It seems like a lot of the value of the cards is to help people understand Janey's mind, to show she knows more than it might appear. But if she wasn't in the mood for doing it, she just wouldn't, and I wouldn't be able to push her to do so, even if I were so inclined, which I'm not.  I wish, as I have wished for so many years, that I better understood Janey's mind.

On a personal note, I was finally officially diagnosed this past week with Sjogren's Syndrome, an autoimmune disease that among other things causes one's eyes and ears to be extremely dry, and also causes severe fatigue.  I've had the symptoms for a while, and a new rheumatologist I'm seeing gave the official name to it, although it's been tossed around as likely for years.  I mention this for a few reasons.  One is curiosity if anyone else out there has the autism/autoimmune disease connection, for any autoimmune diseases (I have some antibodies showing I might another more serious autoimmune condition or might get it at some point, but thankfully not now, but they all tie together quite a bit).  The other reason is just, well, sort of to talk about how a child's autism interacts with a parent's own health issues.  My tiredness, which at times have made it so hard staying awake when Janey needed me awake that it's part of why Tony retired as soon as he was able to, has along the years made this journey with Janey a bit tougher.  There isn't a cure for Sjogren's, but I am glad to have a reason and an explanation for some of my issues.  And I hope if any of you have symptoms you might be inclined to dismiss as just being part of the stress and tiredness that comes along with special needs parenting, you will seek out a medical opinion and keep trying to get answers.  It took me a LONG time to get really proactive about my own health.

I've rambled here, I'm sure partly because it's 1:20 in the morning and Janey is still going strong, but as always, I've enjoyed virtually talking with you, my friends, my sisters and brothers by means of our shared challenges and joys in life.

Snow Days

We had a fairly good-sized snowstorm yesterday, which resulted in a snow day, and another snow day today to finish the cleanup.  As many of you are all too aware, unexpected days off are not a big favorite of Janey and others like her.  However, the past few days haven't been bad at all.  They have been more...interesting.  

Tony was home yesterday too, as his office was closed.  That was great.  Janey had had a tough week, and I was prepared for a day with lots of screaming and tears, but I don't think I saw either one once yesterday.  She was happy and a little bit manic.  She ate a huge amount, and ran around the house a lot, and danced a ton with Tony.  At one point, she suddenly said "Shut up!" in a loud, jovial voice.  She then proceeded to pace back and forth and say "SHUT UP!" for about an hour.  I'm not sure where she picked that up, but she enjoyed it a huge amount, and so we just went with it.  She asked a lot for car rides, but did well when we told her that just wasn't possible.  I kept having her look out the window, although I don't think she quite got why the blizzard conditions were standing in the way of a car ride.  

Janey is usually fast asleep by 7 or 7:30.  She's big on early to bed and early to rise, like her father.  So when she was still awake at 8, we were a bit surprised.  We took turns lying down with her.  She stayed on the bed, playing off and on with her iPad (which we let her take to bed, as it generally doesn't interfere at all with her sleep) and singing and asking for food (which we didn't give her, as she'd had plenty during the day)  I was with her until 10:30.  She was still wide awake.  Tony took over and I slept until 12:30.  I relieved Tony---Janey still wide awake.  I lay down with her and she looked at me with a hugely happy face, just smiling and staring at me.  My eyes kept closing, but when they opened, there she was, watching me.  I last saw her awake at 1:30 am.  At that point, either I didn't wake up again or she finally went to sleep.

We have a few theories about the sleepless night.  She didn't go outside at all, all day, and maybe the lack of daylight did something.  Also, because she couldn't go for a car ride, a few times Tony took her upstairs to where his brother lives, and she had "butter", which is what she calls Nutella.  Chocolate is often the culprit when she doesn't sleep, although lately that is usually only if it's close to bedtime, which it wasn't.  My main theory, though, is just that she was in one of the moods where she's hyper-alert, and sleeping is hard when you are like that.

Today, she was sleepy.  She woke late and then took a nap.  Tony worked a half day.  She was still peppy, but not quite as much as yesterday, and there were a few more tears and screams.

We noticed, both days, something we often see when Janey is home with both of us for a day or two.  Her talking increased.  On days she goes to school, we hear very little talking in the afternoon or evening.  I think she's tired out, and also, perhaps associates talking with schoolwork, and decides to give herself a break at home.  It's fine, but it's nice hearing more talking.

An illustration for "The Ten O'Clock Scholar

Yesterday, when I was attempting to read her a book and she wasn't interested, I quickly before closing the book asked her to point to a few things in the pictures.  With the air of wanting to just make me happy so she could move on, she quickly and with complete ease pointed to three things---an owl, a blackboard and a bell tower.  All of those are words she's never said, to my knowledge, and words that I'd really have no way of knowing she knew.  I've done quick pointing tests with her like that enough to realize she has knowledge of the meanings of many, many words she never uses or lets on she knows.  I wish there was a way she could use these words, to enrich her ability to actually communicate, but I just don't really know how to help her with that.

Today, we were playing a game we often play, where I recite the start of a nursery rhyme and she finishes, or finishes some of it and waits for me to say the next line, and we go back and forth.  I love having an iPhone, because I can quickly grab a video, which I did.  I posted it on the Facebook companion page to this blog, if you are interested.  It's another example of things Janey knows you would not know she knows.  I would say she knows hundreds of nursery rhymes.  Of course, among the ones I started the film is one I don't think she did know ("A ten o'clock scholar"), but that is a rare thing!  If I've read one to her two or three times, it's in her head someplace, memorized.

So---I hope tonight is a better sleeping night.  I hope Janey continues the happier mood for the weekend.  And I certainly hope the storm predicted for Sunday night doesn't happen, so Monday is not another snow day!

"I need help"

It's rare Janey starts saying anything new.  Most of her phrases and words have been with her for years.  When she uses a word or phrase we haven't heard before, it's generally something she heard in a song or on a TV show, and it's not usually used in context.  But the last month or so, we are hearing her say "I need help" all the time.

I'm pretty sure she learned the "I need help" phrase at school.  We've all asked her at home if she needs help, but that would generally translate to her saying "Do you need help?", not using the first person.

It's great to hear her ask for help!  The other day, I was turned the other direction and she said it, and I said "What do you need help with?" and she said "I want my cheese!"  I turned around and she had the cheese block we always have on hand in her hands.  It was an actual conversation, something very rare with Janey, and wonderful to have.

However, as is often the case with Janey, she has started over-generalizing the phrase.  Like "please", she is using it hoping it's literally a magic thing to say.  If it's the middle of the night and we say she can't watch TV, she says "I need help!  TV on!" although she's quite capable of turning on the TV herself, and she's asking for permission, not help.  If we say no to anything, her new first answer is often "I need help!"  It's better than a scream, but a scream comes next if it doesn't work.

I've read about overgeneralizing in speech.  It's a common phase for toddlers to go through, at around age 2.  It makes sense.  Janey in most ways operates about like a 2 year old.  But lately, I am seeing signs of her slow progression to new stages.  One big thing I've been noticing is her experimenting with the world around her in ways I haven't seen before.  We got pool noodle type things to put along the edges of her bed, because we kept banging our shins on it.  She took one off, and then used it above her head to try to touch the ceiling.  We have very high ceilings, and she didn't quite succeed, but it was the kind of play I've almost never seen her do.  A few days ago, she reached over and rolled down the car window (yes, we still have old style windows in the car!)  I had no idea she even knew how to do that, or that if she did, she would be motivated enough to try it.  It's not a great thing to have her doing, as she has several times tossed things out open car windows, but it was cool to see!

I get excited about Janey's progress.  I think it can be easy to lose that excitement that we would normally feel about a child doing new things when the child in question is getting ever closer to no longer really being a child.  As the  years go on, though, I do very little comparing of Janey to "normal".  She is on a whole separate path.  Part of the not comparing is because if I did compare, I would probably fall into despair.  That's what can happen sometimes when I read news or magazine articles that talk about a child with "delays" or with "significant cognitive problems" or so on, and then read about what that child can do and think "THAT'S a delay? I don't even know WHAT they would call Janey's abilities!"  But the other part of it is learning to delight in Janey as she is, to rejoice in every "I need help" or reach for the ceiling or rolled down window.  Tony and I have said so many times this summer that if we could have seen how Janey is doing lately as compared to a few years ago, we'd be very happy, and as I knock frantically on wood, I will close with that.

First week of summer school

I can't begin to say how happy I was to have Janey back in school, summer school.  I hope I don't sound like the world's worst mother saying that, but boy, do I love that school bus showing up and taking her off to school land for a while.  Luckily, I think Janey feels the same way.  She was more than ready to go to school again, after a long time off.  Her school year ended abruptly in May, with a bang and a burst---appendix, that is---and she was getting bored.

Summer school this year is only 4 days a week, so Janey was home today.  I forgot to explain to her in the morning why she wasn't at school.  She got angrier all day long, after about a week of model behavior, and finally, I realized that as happens so often, she had somehow counted the days and felt she should be in school.  She of course can't express this, and I feel stupid that I don't always remember to talk to her about it, especially after how Veterans Day last year affected her.   Around two, I finally said "I know you think there should be school today.  But summertime school is only 4 days a week.  On Fridays, you will be home with Mama"  Almost right away, she calmed down.

It's times like this I wish so much that Janey could communicate more.  I wish I knew how to unlock her voice, or if it is unlockable.  Her talking ebbs and flows, but overall, it never gets better.  She talks about as well as she did at three, and not as well as she did before her regression, when she was two.  Sometimes, that just doesn't make sense to me.  I know she knows more words than she did then.  She understands so much, and shows her understanding by following complex directions.  I can say something to her like "if you want to go in the car, go get your shoes and then bring me the phone so I can call Daddy"  She'll do all that with ease, and even directions with several more steps than that.  When she is in the mood and I give her pointing vocabulary tests, where she can pick from four pictures, she knows all kinds of words like "castle", "raccoon", "padlock", "helicopter"---to name a few I can remember.  She doesn't say them, but she knows them.  And she has not much trouble pronouncing words.  So why does this never translate into more talking?

For some kids like Janey, speech apps on the iPad help.  They don't, with Janey.  She hates them, every single time I've tried them or anyone else has.   Because the iPad talking is indeed talking, the same issues come up that do with verbal talking.  She either can't form the thoughts she has into words, to enter into a keyboard or say out loud, or she doesn't want to.  It seems sometimes like every word she says costs her a great deal of money, and she wants to save her money.  But this leaves us so often with no way to know what she wants, what is upsetting her, what is making her happy, even.

On days like this, when Janey and I are alone all day with nothing to do, I try hard to sort of shadow her, to try to figure out what she likes to do.  I sat with her for a long time today as she watched TV.  She knows a little how to work the Amazon Fire TV box that lets her watch shows on streaming services, but she needs help with the passcode sometimes (which we need, or she buys shows!)  Instead of trying to get a little done in between her need to change shows, I sat with her and immediately responded to anything she wanted done.  What she wanted was to watch the beginning of a certain episode of "Word World" over and over and over.  It was one where the word friends played baseball.  I have no idea what the appeal is, but there must be something in it she likes.  Usually, I try to encourage her to view new episodes of shows she likes, or new shows.  She resists this a great deal.  There must be some reason certain episodes appeal to her so much, and it's another mystery to add to the many she presents to us.

I tried at points today to get Janey to branch out with activities, but as she gets older, she seems to have less interest in a lot of things.  She used to love to be in the wading pool, but today, despite me giving her several new pool toys and trying my damnedest, she would stay in it only for ten minutes or so.  I tried reading to her over and over---she politely closed the books.  I pulled out her toys and knocked myself out trying to get her interested, and she gently took them and put them away.  What she likes lately is two things---watching videos and going places in the car while listening to music.  That is another reason I love having her go to school.  I know she's at least doing something different there.

I'm rambling on here a bit.  It's how my mind feels lately.  I feel out of new ideas about Janey, and fairly low on energy.  Her hospitalization took a lot out of her, and us.  I think for now we are so happy to have her healthy that we have a slightly different perspective on things than we did before. We are happy to have her here with us, and we want her to have a life she enjoys.  There is so much about her we don't understand and can't control, and the older she gets, the more likely it seems she is becoming the person she is going to be for life.  We need to find a way to let her live the best life she can while we also try to live the best lives we can.  That's going to be a challenge, but we are happy to have her with us to work on that challenge.

The Noah's Ark Book

Lately, Janey has been asking me to read her books.  Or if sometimes not exactly asking, at least listening willingly when I read her books.  This is quite new.  Her school has a reading contract due every Friday, where a parent has to write down four books they have read to their kids during the week.  With William, years ago, this was very easy---I had usually about 50 books to choose from, and although Freddy wasn't quite as into books, we still certainly always read more than four in a week.  I love to read to my kids.  It's just about my favorite thing to do.  But with Janey, although I always had read her the four, and almost always more, it often was more like me reading the book while she didn't listen and ran around the house.  Now, though, she is sitting by me, listening and even often gesturing me to point to the words as I read.  That just about freaks me out with happiness.

A few days ago, I was reading her the Lucy Cousins version of Noah's Ark.  Lucy Cousins is the artist behind Maisy the Mouse, and I love her books.  On a few of the pages, there is a big spread with pictures of all kinds of animals.  When we got to that page, on impulse I started asking Janey to point to the animals.  Well, she did.  She pointed to every last one I asked for, and that included such animals as flamingos and scorpions.  She pointed to them quickly and easily, eager, I think, for me to stop asking questions and just read.

When Janey does things like that, my emotions and thoughts run wild.  I am very proud and happy, of course, but I also am frustrated.  Janey obviously knows so much more than she lets on.  WHY does she talk so little?   Why can a day go by and you'd have no idea she knew such basics things as her brothers' names or any words beyond her few preferred ones?  How can she knows what a lizard is, what a ladybug is, but never, let on?

I don't understand why Janey's speech is so restricted.  She CAN talk---the fact that she can recite whole poems and, when push truly comes to shove and there is no way to get around and she really needs to ask, can she ask us by name for such foods as pickled cabbage and duck sauce?  It seems like every new word she actually uses verbally without it being part of a recitation costs her dearly, and she needs to preserve her savings.

On my better days, Janey fascinates me.  I wonder what it's like in her mind.  I wonder how it feels to have all that knowledge floating around there and usually no way to get it out.  But on my less better days, she breaks my heart.  I know how frustrating her life must be, far more frustrating than it is to be me, on the outside, wishing I could get in and truly understand her.