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)

The Pepsi Challenge of unlocking Janey's knowledge

The other day, Janey and I were at her favorite after school place, the "ice cream store", which has been various chains and is now a 7-11.  She wanted soda, and I took a diet Coke out of the cooler.  She usually drinks just a sip or two and then Tony has the rest, and he is diabetic, so we get diet.  I hate diet soda, and I try to avoid corn syrup, so I don't drink regular soda usually (and of course all soda is unhealthy and we shouldn't have it and all that...but anyway...)  As we walked toward the register to pay, Janey yelled out "NO!"  When I asked her what was wrong, she grabbed the soda from my hands and said "No!  PEPSI!"

Janey looking ready to take on the world

Well, that was a huge surprise.  I don't think we've ever used the word Pepsi at home.  Not that we are opposed to Pepsi, but we just call soda "soda".  I had no idea, no idea on earth, that Janey would have the slightest idea there is a difference between Pepsi and Coke, or in fact even that there is a difference between store brand soda and brand name soda.

We went back to the cooler and I got a diet Pepsi out.  Then Janey surprised me again.  She said "NO!" and put back the diet Pepsi and got out a regular Pepsi.  Again, I was stunned. I had no idea she knew there was a difference between diet and regular soda.  So we bought the regular Pepsi, Janey had her usual few sips, and that was that.

I've been thinking a lot about this.  Janey doesn't often tip her hand and let us know what she knows.  Weeks or even months can go by without her saying a single new word, or doing anything really new.  But it's up there, stored in her brain.

When I got Janey's progress reports from school last Friday, there were surprises there too.  In OT, she has been typing the letters of handwritten words into the computer, to get the YouTube video she wants.  I was shocked she was able to do that, to match up written letters with keyboard letters.  The report said at first she typed each letter multiple times, but now she was learning to just hit each one once.  She has also been identifying classmates using TouchChat, an assisted communication program.  I didn't know she knew her classmates apart, to say nothing of being able to pick out certain ones.  At home, she often has trouble giving the right names to her two brothers even.

The problem with knowing that Janey has knowledge she doesn't let on she has is that there isn't always, or even often, a way to get at that hidden knowledge.  It's not very transferable from one context to another.  Like the thousands of songs I know that Janey knows by heart, the knowledge is stored in her brain but comes out only when she wishes it to, when the moment is just right.

Sometimes, though, I think Janey wants to access brain files and she can't, or she can't translate what she wants into speech.  The other day, she came home singing a tune I didn't recognize.  Then she wanted a video, and kept saying names of videos and then getting upset when I actually put them on.  Finally, after a long run of this, by chance she saw the icon for "Yo Gabba Gabba".  I read through the names of all the episodes, and she stopped me at one.  I put it on, she smiled a huge smile and in a minute I heard the tune she'd come home singing.

I was almost in tears thinking how it must all feel.  She knew exactly what she wanted, but the words didn't come.  I didn't remember the tune, and she couldn't think of "Yo Gabba Gabba", or couldn't get her mouth to say the words.  I'm glad we figured it out, but how often does this happen to her?  I know how I feel when something is at the tip of my tongue and I can't quite access what it is.  That's a very, very frustrating feeling.  What if I felt that all the time?

William and Freddy always picked Coke...

I wish I knew how to better help Janey say what she wants to say.  I am sure that much of the time when she acts out and I don't know why, it's from not being able to communicate.  I need to keep in mind the Pepsi incident, and try harder to give Janey a way to have her say, to get her non-diet Pepsi.  It's my personal Pepsi Challenge.

Two Non-Fluent Speakers

I read a lot of books about people going to live in cultures new to them.  It's an armchair travel thing---I doubt I'll ever really live that life, but for some reason, it fascinates me.  Often, the people in the books end up having conversations where both speakers are not fluent in each other's language.  They get by on the words they know from the other language, with a lot of guessing and a lot of misunderstandings.  It struck me today that that is what Janey and I do.  She's not fluent in English, and I'm not fluent in Janey-Language.

The double non-fluency can make communications very tough.  A good example happened this weekend.  Janey was crying, and said to me "Does your eye hurt?"  She often does that, reverses the pronouns and says what she wants me to say.  I asked her to use my hand to touch where it hurt.  That for some reason seems to work much better than having her point.  She took my hand and put it next to her right eye, and then tried to get me to poke at her eye.  I said "I can't poke you there, but let me look at the eye"  I didn't see anything, but it was obviously bothering her.  She then said "My eye is bloody!"  The eye wasn't bloody, but I was proud of how she worked hard to use her non-fluent English to tell me how upset she was over the eye.  I think it was a dry allergy type eye issue.  We took a shower and she felt much better.  But I wished so much we were able to better communicate, that she could have told me exactly how it hurt, that I could have reassured her that it looked fine and that it wasn't anything serious.

Janey woke up this morning crying hard.  The crying is communicating, of course, but I can't understand the specifics of it.  I had no idea what was upsetting her.  We went through the regular morning routines, with the tears still flowing.  They lasted until she went out with Tony to wait for her school bus.  Then she instantly cheered up and was hugely happy getting on the bus.  Although I started the day saying to her "It's a school day!" as I always do when that is the case, I think she somehow wasn't sure it was really a day to go to school.  I think she was upset it was going to be another dull old day at home with Mama and Daddy.  That's my best guess, anyway.  I wish so much, more than I can possibly say, that she could tell me why she's sad when she is.  And I wish I could communicate back to her, that if my guess was right, I could have reassured her that it was indeed a school day.

If there was a way for Janey to be fluent in English or me to be fluent in another other means of communication that would work for her, I would do it.  It wouldn't have to be spoken, of course.  If she was able to  use sign language, or typing, or an iPad talking program, or anything at all, I would do anything to communicate that way with her.  But we have not found that way.  We both remain non-fluent in each other's language.  The onus is on me.  I truly think Janey thinks I can read inside her mind.  I think she thinks I know what she is thinking.  I can't even start to imagine how frustrating it must be when she is clearly thinking what she needs, and I don't respond.  I think she resorts to her English and to crying and screaming when she thinks I'm not responding.  So often, she'll bring me the remote and I'll say "What do you want to watch?" and she'll answer "That one"  I'm sure she has a specific show in mind, and she just can't understand why I insist on making her say it in spoken English, which is so often a struggle for her.

Until we find a common language we can both be fluent in, I will keep trying to work on better understanding what Janey says to me.  I will keep trying to help her better understand and use spoken English.  I dream of the day we can communicate with ease.

Autism speech, or Janey's speech, anyway!

"You say you want to take my socks on, please"

Janey said that to me last night, as she was falling asleep.  It's a pretty typical line from her, but for some reason I thought about it a lot as I too fell asleep.  It has a lot of the elements of her language in it---a lot of what I'd like to figure out about her.

"You say"  --  Janey has started using that at the beginning of a lot of utterances.  It's a little piece of echolalia, from people telling her what to say.  For example, when she's screaming her head off, we might say "You say 'I feel sad!'"  Or if she's supposed to say hi to someone, "You say 'Hi, Maryellen!'"  Mr. Ken, Janey's ABA specialist, has worked on that, by just having us say what we want her to say without the instruction---if we want her to say hi to someone, WE say hi to that person, and then kind of gesture to Janey to follow.  He's very good at getting that to work---me, not as much.  But sometimes it's hard to implement.  When Janey is crying and I say "I feel sad!", it's understandable if she sees that as a statement about myself (and usually I AM sad, if she is)  Whatever the reasons, I think Janey has decided that "You say" is a handy way to start a sentence.

"You want"  ---  And there's the classic pronoun reversal!  I've read that it's very, very common in autism, and very hard to find a way to stop.  One place I read said they really don't understand how typical kids DON'T reverse their pronouns.  How do they learn that when someone says "I", they are talking about themselves, and that it's not just a way to refer to that person?  If Janey is asked "Do you want bacon?", it seems to make sense for her to say "You want bacon" to mean "I want bacon".  Janey doesn't always reverse her pronouns, and it seems a little random when she does and doesn't. But she often does, and I have no idea how to work on that.

"to take my socks on"  ---  That's Janey's other reversal, and not one I've heard is part of autism.  She says the opposite of what she wants a lot of times.  She wanted her socks OFF, so she says to take them ON.  That's a rare thing I remember from her pre-autism speech.  When she was two or so, she always said "Pick me down!" when she wanted to be picked up.  It's like she takes the state she's in, that she doesn't want to be in, and says that.  So we get "buckle me out!" when she wants her seat belt on, "put the TV off!" when she wants it on, "Turn off the light!" when she wants it on, and "Put on my pull-up!" when she wants it off.  It would be harder to figure out if it was not usually evident what she really means, but I still wish I could figure out how to have her clarify those statements.

"please"  -- Now there's a nice one.  Janey has gotten wonderful at saying please.  Most everything she says is a request, so please usually fits in there someplace.  She's even learned how to say it in a pleasing way, in a very sweet voice.  However, like everything with her, there's a catch.  We sometimes call please the magic word, and she believes that literally, I think.  If you say "please" nicely, anything can happen!  There can suddenly be bacon when there wasn't any bacon in the house before, we can go for a ride in the car at 3 am instead of sleeping, I can stop my foolish insistence on brushing hair if she asks nicely enough---it's a magical word indeed!  Her use of please is also delayed echolalia at work.  She's heard it enough, so it automatically gets put in there.

I love it that Janey can talk.  A lot of kids with her level of autism and intellectual disability can't, and there was a time right after her regression, for a few months, when we thought she was losing all speech.  Her speech, however, is deceptive.  Almost all of it is like the example here---a pieced together and echolalia filled and odd way to make a request.  But I'll take it.  I know I am lucky to be able to hear her voice.

Why doesn't Janey talk more?

For some reason, this question was hitting me like a ton of bricks this weekend.  Janey CAN talk.  She can say a lot of things.  She understands speech quite well, at least basic speech.  But her talking is very, very limited.  She uses phrases she's used before almost always.  A unique sentence from her, once analyzed,  almost always turns out to actually be delayed echolalia---something she's heard from a video, song, school, etc.  She learns new words very slowly.  An example is "towel", that I wrote about before---for years, she said "scarf" for "towel".  Now she says towel pretty consistently, but why did that take years, when she can memorize huge chunks of dialogue in seemingly a day?  And why are the sentences she say often so ungrammatical?  For example, they almost always start with "I want" and then use phrases that don't agree or fit, like "I want snuggle on Mama's bed", one of her most said sentences, or "I want go to visit Pino" (her uncle).  Why does she cry sometimes for hours because she can't find a way to tell us the simple thing she wants or what is bothering her?  Why does her speech not progress, despite great speech therapy and being around talkers and going to school?  Why is it so hard for her to answer questions?  Why does she often call people the wrong names, although I'm quite sure she knows their names?  For example, this morning when saying goodbye to me at school, she said "Goodbye, Ms. Janet!" (the name of her speech therapist), and in fact, all weekend almost everyone was called Mr. Janet, even Tony.  It is vanishingly rare she uses William or Freddy's name.  Why does she request things using a question?  The example of that is when she likes a song she hears in the car from my iPod.  She says (frantically) "DO YOU LIKE THAT SONG?"   That means "don't let the song end, replay it fast, I really like it"

There must be something just mixed up in the speech center of her brain, something that makes straightforward speech very tough.  I wish I understood it.  A strange example of the crossed wires or whatever they are was this morning.  She liked a song in the car, and said her usual "do you like that song?" but I was confused as to whether she meant a song that just had ended or one that just started.  She started screaming "Christmas!  Christmas!  Do you like that song?"  I hadn't played any Christmas songs, but I took a guess and played "Living on Love", an Alan Jackson song that has the word "wings" in it.  I think that was it---she's heard "wings" mostly in Christmas songs about angels.  Somehow, instead of the many straightforward ways she could have expressed herself, that was how she did it.

When Janey gets upset, we are trying more and more to encourage her to tell us what is wrong, but sometimes that almost seems mean, because it's so hard for her.  It just doesn't seem to come naturally to her to translate feelings into words.  We give her choices, starting the sentence for her "I am crying because I am...." and she will sometimes plug in "angry" or "sad", but I think those are usually guesses.

Lately she loves Happy Meals, but despite us using that word for them a lot, she asks for them by saying "I want chicken nuggets.  I want French Fries.  I want chocolate milk", breaking down what is in them.  Then we try to get her to say if she wants Burger King or McDonalds, but she will almost always pick whichever we say second in the question.  If she does mention them on her own, it's always "Old McDonalds", from the song.  When she makes an association like that, it's very hard for her to break it.  For example, she usually calls her ABA specialist "Mr. McKen" although his name is Mr. Ken, but both her classroom teachers last year had names that started with "Mc" and I think she came to see that as some kind of teacher preface.    It seems like once she learns a rule, she overgeneralizes it.

Sometimes I feel like if I could break the code that Janey's mind uses for speech, I could teach her things much more easily.  I wish I understood what the speech center of her brain is like.  I daydream often that the Vulcan Mind Meld is real, and I can join minds with her and figure out what goes on inside her brain.  I think it's an interesting and confusing place.

First time saying "towel"

Janey has always called towels "scarves". If she's in the bath and wants to get out, she says "You want a scarf!" The two have similarities, I guess, as they both get wrapped around you and keep you warm, but it seems like she's encountered towels much more in her life than scarves, and it always is interesting to me to try to figure out how she picks what word to use. Today, though, when she wanted to get out of the bath, she said "We'll get a towel, to wipe your nose" A lot about that is typical of Janey's speech. She often, but not always, reverses pronouns, a very common trait in autistic speech. She usually speaks in phrases, which often are echoed from ones she has heard once or twice. I can't imagine when we used a towel to wipe her nose, and it's a little gross to think of, but we must have said that. And I'm thinking she often gives a reason in the second part of the sentence, which I realize I usually do, and she's probably copying from me. I try to kind of "add value" to much of what I say to her, to give her more words to use. For example, I'll say "Let's get on your coat, to get ready for school" or "Put on your shoes, so we can go in the car" So in saying towel for the first time I can remember, Janey either copied a phrase she heard at some point, or created her own sentence using a set structure. If no-one had ever talked about wiping their nose in connection with towels, that's kind of more interesting. She might not have been able to think of how to describe what towels do---dry me off? Warm me up? but she could think of what PAPER towels sometimes serve to do in our house, as we don't usually buy tissues. She hasn't said paper towels either, but the word is the same.

The language part of Janey fascinates me. It's very unlike typical language. It seems like the language part of her brain just doesn't work in a typical way, and she has to use other skills to create language. She is extremely good at remembering exact words of songs, and I feel like she uses that for language---"Let me pull up a time I heard the word I want to say, and use that lyric to make them understand" And the fact that after all these years, she used "towel" for the first time makes me hopeful she is still progressing in vocabulary. I wish I knew better how to use Janey's strengths to help her do so.

Back to Janey

I had a 4 night getaway in Maine, thanks to my parents and my friend Julie. It was wonderful---very relaxing. I missed everyone, but they seemed to do well without me. Janey had been over her crying times for several days, and she stayed happy and slept pretty well. I told her I was going, and talked a lot about how I'd come back, but I never know what she understands. I talked to her on the phone, but I never get much response from that. Nor did I when I actually got back. I have to admit it's a little sad to me. Janey did not show any sign of any emotion when she saw me. She looked completely uninterested. I know that can be that she was overwhelmed and just shut down, but I think I know that look, and it wasn't the one. Either I had prepared her very well and Tony and the boys had taken very good care of her, which was the case, or she really wasn't too torn up about me being gone. Which of course I wouldn't want her to be, but I'm human. It would have felt good to have her run and hug me and get excited. And she DOES do that with some people. She's done it at school quite a few times when seeing teachers or others she hasn't seen in a while, especially I was told when Donna, her PT, came back after being out for a while. She gets thrilled every time she sees my friend Maryellen. But for me, not so much. And I am fine with that. I guess that's the goal of attachment parenting, which isn't quite my philosophy, but which I agree with a lot of. She is securely attached and she knows I'm coming back. I'm rambling a bit.

Being away sometimes gives me a fresh perspective on Janey. This time, it make me think over again about how limited her ability to communicate is, and how I think a lot of her frustration is when she can't figure out how to ask for what she really wants. She asks for the closest equivalent she can say, and then isn't happy when she gets it, because it's not really what she wants. For example, she will often say "I want go in the car" I am pretty sure in her mind she has a specific destination, but she can't think of the words to ask. When she said that today, I tried listing everyplace I could think of she might want to go, and even that didn't work. She finally said "I want go in the car TO MAMA'S HOUSE" and when I said "We are already here!" she got upset. I was wondering (hoping, maybe) it was a roundabout way of telling me that when I was gone, she had wanted to go to where I was. But she's given that answer to where she wants to go a lot of times in the past, and I think more it means she wants to go in the car that is AT Mama's house, to go elsewhere. She also often says lately "I want water" which can mean anything from a bath to a drink to the wading pool to the beach to playing in the sink to washing her hands.

Anyway, in returning, I felt extremely grateful to Tony. He kept Janey happy, cleaned the house some, cleaned my car, had a special meal ready for me....I am very lucky, for friends and family that give me a chance to recharge and for a family I love to come home to.

The reality of progress

As I sat down to write this post, I thought about this morning. It seemed in my mind to be a good morning. Then I reviewed Janey's behavior. She woke at 5, as she almost always does, asking for videos. When bored at one point with them, she decided to play in the cat litter, which luckily we caught quickly. She peed on the floor a bit after that, all over the place. And just before my hands hit the keyboard, she dropped a piece of cheese she was done with in my coffee. But the mind's editor had edited out that background noise, the everyday autism stuff, and concentrated on the progress. It's how we stay sane.

When I used to like to read books about children with autism (which I don't do, now, but before having my own example, I found fascinating), there would always seem to be a point where the child did something amazing---said a long sentence, showed empathy, created a master work of art, "passed" for normal in a classroom---and the book would end there. It would seem to me like from that point on, things would be great. If they could do that amazing thing, the autism would fade into the background.

The reality is that the progress is wonderful, encouraging, fantastic, but it doesn't create a glorious end of story moment. The autism is still there.

Janey really has been making wonderful progress lately, and I am thrilled about it. I had her IEP meeting last week, and as always with her amazing team, it was an uplifting time. I am almost moved to tears every time I think about how many people at Janey's school love her, care about her, want the best for her, work hard for her. I never, ever take it for granted. I heard great things about Janey---how much more she is greeting people, how she is often recognizing her name, how the other kids love her. I heard the cutest story of all time about her. When her special ed teacher asked her, as Janey gazed at her, "What do you want?" Janey answered "I want to wish you a Merry Christmas!" And then they sang the song together. I heard so many positive things. But of course we all also agreed that Janey still needs to be supervised closely every single second, for her safety. That amid all the progress, the fact remains she doesn't know most of her letters, she can't write, she speaks mostly in 2-3 word simple sentences, she can count but not really meaningfully, she is inconsistant even about the things she knows well. None of that bothers me much. But it stays there, in the background.

Yesterday was a great day. We visited my sister and her son and his girlfriend. Janey learned the girlfriend's name right away, and used it well. At one point when she was crying, she said one of her longest sentences to me "I am upset because I want to go home". (she didn't really that much, but at that moment she did!) She was good in the car, something quite new. She ever did a classic pesky younger sister bit. Freddy was trying to practice his declamation, to recite a poem in class today. Every time he started to recite it to us, Janey starting reciting from a video, in a loud voice. This happened about 5 times. Then Freddy was quiet for quite a while, and so was Janey---not a word. As soon as Freddy started reciting again, she did too, in a loud monotone. She was driving him crazy, and she knew it! Even Freddy had to laugh and feel a little proud.

And yet, she can't do so many things that are special for this time of year. She has no clue what asking for something for Christmas means. She can't anticipate Christmas---she doesn't have the necessary knowledge for that. I am not a huge Christmas gift giver, but there are special things her brothers want, and I know they will be excited to get. I never have any idea what to get Janey. I will probably go with some Funonions, her favorite snack. I know she'll be happy with that. But I'd love to have her asking for the latest hot toy. Yet, she love the tree. And she adores Christmas songs, as the story above speaks to. I am very lucky to be able to enjoy the progress, to see the cute and fascinating things she does.

And so it goes on. It's reality. Reality doesn't end with a breakthrough moment. It's lifelong. We can thrill in the moments along the way, and stumble on, living our real life.

Language notes

Janey's language, when I can remove myself from feeling upset over it, can really be fascinating. I bet someone could do a whole study of how she talks for a graduate thesis, but that just might be a mother's perspective. It seems that interesting to me, though. It's very hard to describe to people. What I usually say to people who don't need the whole story is "She doesn't talk much". And that's true---she is often just silent. But she CAN talk, and does talk. A great deal of it is echolalia---repeating what she's just heard, but usually for meaning---for example, I'll say "Do you want some juice?" and she'll say "Do you want some juice!" to say yes. Some of it is random things she remembers, like lines from videos or parts of songs or nursery rhymes. It's her original speech that's the hardest to get a grasp of. Most of it is asking for things, and some of that is straightforward "I want cheese. I want water. I want Maisy on" But then there's the rare kind, when she observes something and talks about it. That's where I think there's word retrivial issues. On the way to school the other day we saw a big building under construction. Part of it had a temporary grid over it that hadn't even been there before. Janey noticed it, and said over and over "Cage! Cage!" It did look like a cage. It must have gotten her attention enough to want to share, which is unusual, but she didn't know how to really explain. If I hadn't happened to notice the building, I would have had no idea what she was talking about, and I bet that happens a lot---she says words that seem random, and I just think "What is the world is she talking about?" but she's really trying to tell me something. I think also if she gets the wrong word in her head to start with, it stays there. For example, she always calls knives "cutters". She talks about them a lot because she often wants me to cut her a piece of cheese, and she'll say "need a cutter". I always say knife back to her, but cutter seems to be implanted pretty hard in her head.

She is showing that she knows a lot more names than we had thought. She's finally saying "hi" to people, and often by name. Usually there's a little autistic twist---yesterday she said "Say good morning Ms. Thornton" to her teacher. But she knows the names. Or some of them---she thinks all the cats are named Tommy, and often she will call William Freddy, or use Freddy as shorthand for "brother", although she certainly knows William's name. Once in a while she still calls me "Daddy".

I'd say most of what she says is still single words. It's like she has to pay for each word, and so keeps things to a minimum---"Apple! Olivia! Snuggle! Outside!" and we know what she means. I probably should pretend not to, or insist on a full sentence, but for me, communication is the key. If she is communicating, I don't want to put up stop signs or act like it's not good enough for me. She is very easily frustrated. Times when I have said something like "Say 'I want an apple, please'" and she's tried a few times, she will break down entirely, cry, and I'll lose her for an hour. I guess there would be a school of thought that I should do that anyway, and after a while she'd learn, but in my mind, that's a precious hour lost and also sending her a message "I know what you are saying, but it's not good enough for me. It's not enough you're trying to communicate when it's so hard for you---you have to do it JUST RIGHT" I also always use what I did with the boys as a template. I "spoiled" them much more than Janey even---I know I did a lot for them that they could have done for themselves, but now they both are very good communicators and excellent students, and very independent. I would never have insisted they get their requests just right before helping them, and they COULD have done that, so why should I do that with Janey, when it's so hard for her? My goal is for her to feel loved, cared for and understood.

Anyone out there?

Lately I have really been craving contact with other mothers (or fathers) of autistic girls. I have been searching for a support group in Massachusetts especially for parents of girls with autism, but none seems to exist, and I can find very little on-line either. They say 1 in 4 children with autism are girls, but I don't know where they all are. Information I do find seems to be about girls with Aspergers or high functioning autism, which is not like Janey. I think autism is different in girls, and it would be great to have someone to talk to about that. I really don't know who reads this blog, except people I have told about it. If you do, and would like to connect, please leave a comment, or if you would rather, email me at booksandclothes@gmail.com It would mean a lot to me.

Janey has been fairly cheery lately, but I have worries her talking is decreasing. Lately I only seem to hear requests type talking "I want Winnie the Pooh" "I want ice cream" and nothing else. And at times it seems like it's harder to understand her---she always spoke clearly in the past. I really don't know where to turn sometimes. I feel like it's a slow acting emergency---I can't take her to the emergency room and say "I'm losing her!" We are extremely tight with money, and so many things that would help cost money. I need to start calling clinics and hospitals and just make appointments, but I worry so about the co-pays and deductables.

I've been feeling frustrated with talking to Janey in the car and other times. It seems like I keep up a monologue all the time and I don't know if it does a bit of good. I don't know if she is processing anything I say. Should I just shut up and give her some peace and quiet? I talk constantly to her. It feels right to do that, and that is what I did with the boys, and they are quite the talkers and have great language skills. But does it just overwhelm her?

I hope 2010 is a good year, one where I get some answers and Janey makes some progress.