"Daddy just went asleep"

Early this morning, about 5:30, Janey woke me up by putting a Tupperware container of cheese on top of me.  This means she wants some cheese cut up.  We keep a knife right in the container for convenience.  In my sleepy state, I asked "Where's Daddy?", hoping he could do the job.

We ask Janey questions like that all the time, questions we don't really expect an answer to.  I've tried at times not to, to not to push her to talk when she doesn't want to.  But the questions sneak back, because that's a natural way of having a conversation, and in general, I like to talk to Janey like I would to most people.  It's easier, and it assumes competence, which is important to me.  But that doesn't mean she answers me...usually.

After a pause, I was very very surprised.  Janey said back to me "Daddy just went asleep".

It's hard to really explain how surprising that answer was, but there were many, many unusual things about it.  One is that it was original.  It wasn't echoing something she'd heard.  Almost all her speech that is more than a single word is an echo.  Sometimes it's echolalia that works just right in the situation she's in, but most of the time, it's not.  She'll say lines from a movie, or something that one of us said that caught her fancy.  She'll sing, or obsessively repeat our refusals "I'm not taking you for a car ride right now!  We don't have any salami!  It's time for bed!", things like that.

Janey will also often give yes or no answers (but sometimes mixing up yes and no).  It usually takes a couple tries.  We'll say "Do you want some crackers?" and wait for an answer, and then we'll rephrase it "Do you want some crackers, yes or no?" or perhaps "The food I want is...." giving her a fill in the blank.  And eventually, she'll say yes or not, or repeat "The food I want is crackers"

Almost all Janey's speech that isn't scripting or echolalia is used to express wants.  That's great.  We love knowing what she wants, and we will praise her heavily for saying something like "Want to go for a car ride?" or "Want to watch SpongeBob?", telling her we really appreciate her telling us what she wants.

So---what we almost never heard is speech that is original, speech that doesn't express a want, speech that answers a question, or speech that is a sentence.

When Janey does say something like she did this morning, there is a tone she uses we don't hear any other time.  It's slower, with less expression.  It doesn't flow out like her frequent scripted speech.  It's very deliberate.  And that is how she said "Daddy just went asleep"

Tony had not actually just gone to sleep.  He was in the bathroom.  But often, when Janey wakes up in the middle of the night and wants something, Tony will very justifiably say "I just went to sleep!"  And so, Janey heard my question and understood why I was asking it.  She understood the subtext---why are you waking me up to give you cheese?  Why aren't you asking Daddy?  (Tony usually is awake long before I am.  He's the world's ultimate morning person)

Progress with Janey can be very, very slow.  It can be so slow it appears not to be happening.  We can try to teach her something and see almost no progress for years and years and years.  But she's learning, at the pace she can and wants to.  Today's sentence was a wonderful reminder of that.  For whatever reason, speech of some types is incredibly hard for Janey.  I think the part of her brain that would form answers beyond yes or no, that would form original sentences, just doesn't quite work like other people's brains.  I think that accounts for the very different tone she uses for the rare times we get those sentences.  They require use of some other system in her mind.  It's like if we wanted to solve a math problem using only verbal skills, or wanted to walk without the automatic motor skills.

I don't believe in breakthroughs with Janey.  Having her say a sentence like she did today doesn't mean it's going to start happening all the time.  That's not the point.  In some ways, it's a reminder of why it's so hard for her to talk in that way.  Even in this case, the sentence wasn't quite accurate, and it wasn't quite grammatical.  But it happened, and we need to always remember that Janey had abilities and capacities that doesn't show themselves on a regular basis.

Every day, I am so proud of Janey.

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.

Janey at 15

It's hard to believe Janey is 15.  Some ages seem like a jump to me of more than a year, and 15 is one of those.  It seems a lot older than 14.  14 still seems like part of childhood.  15 feels like definitely teenager-hood, and not that far from adulthood.  It doesn't seem possible.

So, who is Janey at 15?  By 15, I think you are who you are going to be, to a huge extent.  I can remember myself vividly at that age. It's the first age that feels like part of now, like years have gone by but in some basic way, I haven't aged beyond the person I was then.  I don't mean I haven't had a lot of life experiences, or learned a lot along the way, but my personality then is my personality now, to a large extent. 

When thinking about who Janey is, I both try and don't try to separate out the autism.  I can't and don't want to totally separate it.  It's a big part of who she is, and an important part.  But it's not ALL of who she is.  There is a lot of her that I am quite sure would be her no matter what.

Janey is a cool person.  She has strong likes and dislikes.  She likes music, but not just any music.  She loves British Invasion 60s music more than anything else.  She also likes most songs with a very strong beat---disco, some country, some dance type music.  She is not a fan of soft rock or slow songs or most of the country I like.  She likes some Broadway music, but not most.

She loves food, most of all what her father makes her.  They share a deep love for steamed vegetables (something I would not eat on a bet) and for eggplant and Chinese food and cherry tomatoes and raw onions.  She is the world's hugest salami fan.  She's a food snob.  Rarely does a bite of school lunches pass her lips.  Food needs to be fresh or freshly prepared or expensive!

Janey has gotten more into movies lately, particularly just a few movies.  She watches "Coco" and "The Emperor's New Groove" every day, broken up now and then by "Pocahontas" and "Home".  We are glad that a stage she had for a while of watching kids' YouTube videos and rapidly switching from one to another seems to have subsided, but it could come back.  Her favorite kids' TV show right now is "The Cat in the Hat Knows a Lot about That"

Car rides are still one of Janey's favorite things.  If she had her way, we'd spend most of our days driving about on a car ride.  She seems to love more than anything watching the world go by as she listens to music in the car.

Janey has a temper.  When she's told no about something she wants to do, she is extremely quick to anger, to scream.  More than she used to, though, she does get over it.  That doesn't mean she doesn't ask again, a few minutes later, and scream again if the answer is still no.

A sense of humor is one of the best things about Janey.  She loves to laugh with and at us.  She is so happy when we are all happy.  She rewards funny little songs and sayings with a huge smile and hug.

Sometimes I make myself step back and look at Janey from the perspective of an outsider, someone who doesn't yet know her well.  To that person, how would she look?  Well, most people do see her and know that she is not completely typical.  She does some things that look typically autistic, like flapping her arms.  Her speech is not generally in full sentences, unless she is scripting or using echolalia.  It's mostly requests..."Want a car ride?  Want salami?  Want cuddle?"  It's extremely rare she simply comments or states things.  She still bites her arm quite a bit, when angry or upset but also when very happy---it's a sign of strong emotions.  We hold her hand most of the time in public, not because she's a runner but because she is unpredictable.  She can sometimes poke people's stomachs or grab things that are dirty or unwise to grab or decide to take food out of someone's hand she feels should be hers.

Janey has grown up a lot over the years.  We can talk her down from more of her emotional crises, we can understand more of what she needs and wants, we can give her the tools to entertain herself, we can tell her to wait a few minutes (some of the time), we can even get her help with things like bringing us a needed item. 

If you had seen Janey at five or ten, you would probably be surprised at Janey now.  It is why I hope that those with girls like Janey who are younger than her keep up the faith.  My dear friend Michelle told me it would get easier, and she was right.  It did.  Either that, or we changed. 

I don't picture a "typical" Janey much.  A typical Janey would not be Janey.  It would be someone else.  I don't want Janey to be someone else.

But in saying that, I still feel fear.  I fear the world is not ready for Janey and her sisters and brothers in autism to become adults, to live in the wider world.  It's part of why I want the world to know Janey, to know her as a person, to understand that she exists and is as worthy of a life as anyone.  I worry, in my darkest moments, that the world will not embrace Janey, that the worst parts of the world will take advantage of her.  That is what keeps me up nights.  I want everyone to know the true Janey---not just the easy to talk about parts, but what she really needs to be a healthy, included person in the world.  It is why I talk for her.  I feel like I have to let the world know she is part of humankind, just as she is.  Not a sanitized version of her, not a technicolored dream version of her, not a doom and gloom and how tough a lot we have been dealt view of her, but the most accurate view of her possible.

Janey will start high school in 11 days.  I am scared.  I am scared about a long bus ride she will have to take to go to the great program we chose.  I am not scared of the time she's actually in classes, because the Boston schools have been very good to Janey.  I'm scared of the meanness that does exist in this world, of any moment in Janey's life when she is not being carefully watched, of her inability to tell us about her days, of her beauty and her innocence.  I love her so much.

Janey, thank you for being you.  We have been lucky to have these 15 year with you.  I hope we have many, many more together.

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

Hearing myself on a bad day

Yesterday was a Bad Day.  Not the worst day ever, but not a very good day.  I read the news too much, and worried too much, about health care and education and Mary Tyler Moore dying and all else.  I am not political, but it's hard to keep from hearing political decisions and worries and anger unless you are in a remote location with no internet, TV or radio---coincidentally, the location I've been daydreaming about somehow going to.  So long before Janey got home from school, I was not in the best of moods.

Frog and Dog from Word World, feeling like I did yesterday

Janey got off the bus yelling.  It took me a few minutes to figure out what she was yelling.  It was a line from "Word World", one of her favorite shows, over and over---"Who's going to read my book on the radio?"  She was screaming it with the intensity you would usually save for warning people of a fire or flood.  I'm sure it was not easy on the bus driver, aide and other kids on the bus.  She screamed her way in, and I guessed that possibly she wanted to see that episode, and put it on.  She watched it, with not that much screaming, but then it was over and another one came on.  Janey didn't want to see the next one.  Not at all.

Tony says that Janey's screaming often hurts his ears.  I thought this was more of a figure of speech.  Maybe I'm half deaf already, but I hadn't had my ears literally hurt by a scream---until yesterday.  Janey's scream over the wrong show coming on felt like someone was poking an ice pick into my head through my ears.  It was truly ear-piercing.

I tried, and in my mind did a good job with, starting my calming patter with Janey as she screamed.  I said things like I knew she was upset, I wanted her to feel better, the wrong show was over...things like that.  However, I also must have said "I don't like it when you scream"  I know I must have said that, because that is the phrase she started repeating.  At the top of her lungs.  For a long, long fifteen minutes or so.  I hope I didn't really sound like her echoing of me.  If I did, I sounded like, well, someone seriously unhinged.

Finally, she calmed a bit and asked for a snuggle.  I put blankets over us, as she likes, and lay next to her and we sang together a bit.  Things seemed better.  Then---the bed was soaked.

As I pulled the sheets and blankets and everything else off the bed, I must have said "I'm so tired of this"  I didn't mean to.  I meant to...I don't know what I meant to say.  I meant to say whatever it is you are supposed to say to a twelve year old autistic girl who is sometimes toilet trained and sometimes not, and who refused at least three times that afternoon to try to use the toilet.  I don't know exactly what that right thing to say is.  I don't know if anyone does.  But she heard me.  She heard me and started repeating, again in scream mode "I'M SO TIRED OF THIS!"  For half an hour.

When Tony got home, I was pretty much reduced to a quivering, ranting mess.  Often upon his entrance after work, I say "Thanks for coming home".  I mean it.  I know there are men, and women, who would, after the years of coming home to a spouse who is acting like I was acting, would say "to heck with it" and just stop coming home.  Tony is not that man.  I am very lucky.  He took over with Janey and I sat for hours watching dumb shows on TV and trying to empty my mind.

Janey slept well last night, and woke up in what seemed to be a good mood.  I hope school is okay.  Reports are she's been having a tough time there lately too.  Yesterday her teacher said she was singing loudly in the morning, and I could picture it quite well.  I honestly don't know how the other kids in the room can work at all when Janey gets loud.

I don't know how to conclude this.  I wish I could say I'll try not to say things that aren't positive to Janey, that her repeating of them shows she hears negative messages from me.  But honestly, I don't know if I can be that perfect.  I don't know if anyone could, anyone on earth.  Most of the time, I can truly say I do the best I can, and I'll keep doing that, but some days, it's a lot harder than others, and I am sure that goes for Janey too.  Thanks for listening, my friends.

A Little Beyond Happy

Janey's wonderful weekend last weekend has been followed by what often follows some of her very best times---a bit of what I can for the lack of a better term "mania".  I know it's not classic mania, probably, and I know that is a loaded term and that it has a clinical meaning and that using it says something specific....but that is a shorthand term I've come to use in my mind for how Janey has been this week.

It's been milder than in the past, as her unhappy periods tend to now be also.  In the past, she often would sleep extremely little during these periods, going to bed very late and waking very early.  We haven't seen that---she seems to be in a teenager style sleep mode a little young, and it's hard to wake her up for school although she goes to bed quite early.  But it's there, and it can be quite something to deal with.

So what does she do when she's "manic" (and I will just call it manic without quotations from here on in!)?  She repeats phrases, over and over and over, far beyond the typical delayed echolalia.  Last night, it was "Okay, all right, I've learned my lesson already!".  Over and over, in the exact same tone, probably 500 times.  I think it might be a phrase from a movie she's watching on Netflix a lot, "Home", or it might be from an episode of a new Scooby Do series on there also, just based on tone of voice.  She eats, huge amounts.  After school yesterday she ate a whole container of feta cheese, a full jar of salsa, a good amount of frozen yogurt and some cookies, and then ate a ton of dinner---homemade chicken nuggets, and still was asking for food at bedtime.  And she laughs---a laugh that is sort of like a laugh track, unvarying and not terribly related to anything going on.  The laugh can turn into almost a shriek, especially out in public.  Sometimes it sounds close to a scream, and it takes looking at her for a minute to figure out it isn't.

One of the toughest things she does when manic is be a little free with her teeth.  It's not biting, but it's pushing her teeth into me, in a way that's hard to explain.  It can hurt, and it's scarily close to a bite.  Last night she also started hugging me in a way that turned into elbowing me.  I don't think she realizes she is doing these things, and telling her to stop and backing away doesn't seem to change much.  She goes right back to doing it as soon as she can, laughing at whatever I say in trying to stop her.  

Usually these manic periods don't last long.  I'm glad they don't, although with their lessened intensity, they are easier to take than they used to be.  But they still make me kind of sad for Janey.  It's like even feeling happy and good turns into something else for her.  It feels like playing a happy song and having it get stuck, repeating the same happy laughter-filled phrase until it loses all meaning and is like a trap.  And the mania seems to often be followed by a plunge into screaming and sadness, from one kind of intensity to another.  I am crossing my fingers and hoping very much that this time, that cycle is broken and she can go back to the amazing relaxed happiness of last week.  Please.

What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.

The word we don't say anymore

Even when I started writing this blog, about 8 years ago, it was still marginally acceptable to use what I will now call the "R" word.  Now, the acceptable term is "intellectual disability".  In many ways, that's a better term.  The R word meant behind, and implied that those it referred to would someday catch up.  Intellectual disability doesn't have that implication.

In general, I am not too hung up on semantics.  Part of the reason is that it often takes quite a while for the general public to catch up with those in whatever community it is that creates the word.  It is sometimes easier just to tell people straight out---"Janey is ....."  I have done that, a few times.  Generally, I resort to that when I heard something along the lines of "But all kids with autism are really, really smart!  You just need to unlock it!  Have you tried (insert latest hip treatment here)?"

However, as the years go by, I realize that both the incorrect term and the more correct one are pretty meaningless.  Yes, in many ways, Janey is intellectually disabled.  There is no question there.  Despite many, many years of teaching, she doesn't know her letters, or numbers.  She can't read or write, or really use a writing utensil at all.  She speaks mainly in short, familiar phrases or echolalia.  If her IQ was able to be tested, it would be very low.  But those academic areas are just a small part of who she is.

I don't like to think about it, but the truth is, before I had kids, I thought having a child that was the R word would be the one thing I simply couldn't deal with.  I would guess a lot of people think that.  I felt it would be the ultimate tragedy.  Now, I can say with complete honestly that I was wrong.  In day to day life, Janey's intellectual disability makes little difference in her life.  It matters far less than her happiness, her health, her safety.

I also get now that there are many, many kinds of smart.  I often say to Janey "You're so smart!" and totally mean it.  She is smarter than I am in a lot of ways.  She dances far better than I ever will.  She is good at using the computer and iPad.  She can run a lot further than I ever could.  She has more sophisticated taste buds.  She is less socially anxious.  She is a million times more musical than I am.  She has a wonderful sense of humor.  She has more fashion sense than I do.  I used to think, honestly, when people said there were many kind of intelligence, they were saying that to somehow cover up the fact that whoever they were talking about didn't have "real" intelligence.  I hate it that I used to think that.  It's not true.

So, you might ask, why even admit, why address the fact that Janey does indeed have an intellectual disability?  Well, because it does make a difference in terms of what the future holds for her.  I believe in living in reality.  The kinds of smart Janey has are not the kinds of smart that will make her able to succeed academically.  She will never get a high school diploma.  She will never go to college.  And beyond academics, she will never hold a real job, or live on her own.  And I hear already a chorus, probably mostly from my own mind, saying "You are assuming a lot there!  Don't you have hope?"  And the truth is, at this point, I think reality is more important than hope, at least hope for things that there are a vanishingly small chance will ever happen.

There are kids with autism, including non-verbal or low verbal kids, who don't have an intellectual disability.  That is extremely important to keep in mind.  But I think it's also important to admit there are kids that are indeed intellectually disabled. Sometimes, I feel like at some high level, it might be almost a conspiracy to not admit that, because not admitting it lets us as a society not truly deal with a future that is coming.  Janey will need lifelong care, and so will many, many others like her.  We can hope that isn't the case all we want, but it's reality.  Until we admit that as a society, we will not be planning for it.

In a bigger sense, I wish everyone could realize what it took having Janey for me to realize.  Being intellectually disabled is NOT A TRAGEDY.  It's not something so horrible that we have to pretend it doesn't even exist, have to say that somehow it will magically go away in the future.  It's not the end of the world.  Janey is one heck of a terrific person, despite being the word we don't say any more.

My terrific Janey

The Sun Did Not Shine

Yesterday was a snow day here, a start of spring unwelcome snow day.  Janey and I were home together all day.  I spent the day working on keeping her happy and occupied.  It went fairly well, overall, but by the end of the day, waiting for Daddy to get home, Janey started some screaming.  Then she said "The sun did not shine.  It was too wet to play.  So we sat in the house all that cold, cold wet day"  As most of you probably know, those are the starting lines of "The Cat in the Hat", one of Janey's favorite books.  It took me a minute to realize how appropriate the quote was, and just what Janey was saying.  It certainly was a sit in the house all day type of day.

Talking through quotes is just one of the ways Janey communicates in what could be called non-standard ways.  It's fascinating, but it's also very frustrating.  As she gets older, and some things get easier, the communication doesn't seem to be getting smoother, and more and more, I think it's a piece we have to work on.  I can figure out much of what Janey is trying to tell me, but I am not always going to be with her.  I wish so much we could find a way to help Janey talk to the rest of the world, and talk more easily to us.  I think so much of her frustration and anger could be helped by being able to tell people more easily what she is thinking.

On a day about a week ago, a day that featured much screaming, out of desperation I found an iPad app called GoTalk Now.  It was free and easy to set up, and looked like something Janey would be able to figure out.  It let me create 3 pages (in the free version) of touch screens with words or pictures or phrases, with up to 25 per page, that Janey could touch to hear out loud.  I hoped she might use this especially for emotions.  I made a page with my own face showing nine emotions, and my voice saying the words.  Janey understood easily that she needed to touch one of the faces to get the emotion spoken, but like almost all attempts of this kind, she wasn't interested in using it to communicate.  She did, though, take to one of the buttons, me making a silly face and saying "Silly!"  She hit it over and over, and each time since then I've tried to get her to use the app, which I expanded with a page of phrases she might need and a page of names, she quickly and easily goes to the feelings back and hits the silly button.  No matter how often I try to use the other pages or the other feelings, she is interested only in hearing "silly" over and over.

Janey watching TV

The way Janey communicates which TV show she wants is illustrative of the joys and frustrations of talking with her.  If she wants a show, she brings us the remote.  We ask her what she wants, and she says the name of the show.  We put on the TV and go to the Amazon Fire TV menu, which lets us access Netflix, Hulu and Amazon Prime shows.  If she has asked for a certain show, we go to that show, and I ask her what episode she wants.  She knows the names of a few episodes of a few shows, but usually, I wind up scrolling through all the episodes and saying their names out loud.  Janey points at the TV until we get to the episode she wants, and then she points to herself.  I confirm the episode name, she repeats it, and we put it on.  If I go past the episode in the scrolling, she points to the left, to show me to go back.  It all works most of the time, but it took literally years to get to this point, and still, now and then, we don't get what she is asking for.  She'll sometimes quote a line of dialogue from the show she wants, and if we don't recognize it, she's very upset.  Or she'll say something that is in the little picture illustrating the episode.  Our favorite example of this is an episode of Kipper, which shows Arnold, Kipper's little pig friend, with his head poking out of a box.  That is called "head in a box" and the first time we figured out that one, we laughed for a good long time.

As we get through our days, figuring out if we can what Janey is asking for, guessing at her sometimes cryptic way of getting her meaning across, I worry.  I worry because Tony and I will not live forever, and I want Janey to be able to talk to a wider world.  I want her to have a way to tell whoever she needs to tell what it is she wants and needs and thinks and feels.  There is so much she has to say---I am sure of it.  There must be a way, some way, somehow, to help her communicate in a way that is more universally understood than the way she does now.

Does autism acceptance include respecting NOT communicating?

I like to think I'm pretty good at accepting Janey for who she is, at celebrating what she brings to the world, at not wishing she was who she isn't.  However, I've never quite accepted one part of her---her limited communication.

Janey's speech is a mystery to me, and to many who know her and work with her.  It's hard to describe how it is.  I use the term "minimally verbal", which I am not sure is an official term.  Janey says a few things readily.  She asks for food and TV shows by name.  She asks to "snuggle on the bed" and for a shower.  She says "want disc" when she wants to hear music, in any form.  That's about it, for communication type talking.  However, she CAN say almost anything, in echolalia form.  She can recite movie or TV lines with precision and expression, for hours on end sometimes.  She can also sing what I believe is any song she's ever heard, in tune and with all the lyrics, although never on demand, just when she wants to.  So it's not a matter of a problem with forming words.

Of course, speech isn't the only way to communicate, but Janey doesn't communicate much in other ways either.  She has shown violent opposition to iPad type speech programs or PECS type picture exchange talking, at least at home.  She has no interest in sign language.  She doesn't like to point out things, or gesture.  She can't hold a pencil well enough to write, and shows no interest in doing so.  She isn't able to type.  Overall, her communication of any kind is quite limited.

And I don't accept that well.  I want her to communicate with me.  I want it very much.

This picture captures the look I'm talking about pretty well.

A scene that has been repeated hundreds of times...Janey and I are doing her favorite thing, snuggling on the bed, the bed she calls Mama's Bed although it's been her bed for years.  She is very happy.  I am singing to her, or making my fingers pretend to be people jumping up and down, or reading her a nursery rhyme book, or often, just smiling at her.  And then I go and spoil it.  I pressure her to talk.  I say something like "How was school?"  Or I start a sentence for her "Today at school I...."  Or when I'm reading a nursery rhyme, I stop in the middle "Humpty Dumpty sat on a wall, Humpty Dumpty had a great....", waiting for her to say "fall.  And hundreds of times, the same thing happens.  Janey's face falls.  She gets a tense, distant look.  She looks scared, anxious.  We have gone from connecting to not connecting, strangely enough, because I am trying to connect in the way I want to connect.

What if I accepted Janey is communicating just as much as she wants to?  That would be a radical thing for me to accept.  But it might also be a realistic thing to do.  Janey's speech has never really improved from the time of her big regression, at age 3.  It's sometimes wobbled---gotten better for a while, and then worse for a while, but it's never stayed consistently better.  And this is despite speech therapy three times a week for eight years now, despite being in a family that surrounds her with talking constantly (none of us are very good at ever shutting up), despite so many attempts to give her alternative ways to communicate.  No matter what I've done, she communicates just about the same amount as she ever has.  So what if I just decided to stop pushing her to do more communicating?

When I think about it, Janey HAS communicated her feelings about the subject of communication itself pretty plainly.  That look she gives me, and the fits she has thrown when we insisted she "use her words", the anger reactions to apps like Proloquo---that's communication, communication I have chosen not to accept, not to hear, because I don't like the answer.  What if I respected what she's told me?  What if I gave her credit for communicating just as much as she wants to?  She CAN talk.  She CAN use an iPad.  If she wants to communicate more, well, she's shown me over and over that if she wants to do a thing badly enough, she does it.  So maybe it's time to listen to her, and stop pushing her.  Maybe eight years of her firmly telling me in her own way that she's communicating as much as she wants to should be enough for me to finally get the message.  Maybe sometimes acceptance means accepting that what our child wants isn't what we want them to want---maybe.

How are girls with autism different than boys with autism?

A good question was posed by my father recently.  He asked me what I had found over the years made autism different when shown in girls as opposed to boys.  I had some ideas, based on talking (mostly online!) to other mothers of autistic girls, but I wanted to find out more, so I reached out to people who are members of the Facebook group that is a companion to this blog, and I got some great responses!

A BIG NOTE HERE!  I am NOT an expert on autism or autism in girls!  ANOTHER BIG NOTE!  Everything I note here is NOT TRUE OF ALL GIRLS!  For everyone that had an idea for a trait that was different in girls, there were others who saw the opposite trait.  And there's the old saying "You've seen one child with autism, you've seen one child with autism", meaning kids with autism are NOT homogeneous!  They are very different from each other.  But I think it's worthwhile to collect some ideas and trends I've seen, if only to spark conversation!

The first difference with girls is one of the few that I've been actually told by someone who IS an autism expert, a specialist at a clinic we take Janey too.  I've also read a few studies that say something similar---girls with autism, statistically, are more severely affected by autism than boys.  Of course, there's many ways to look at being severely affected.  You can't just say on a scale of 1 to 100 how severely affected someone is.  But if you looked at the impact of autism on a life, and perhaps looked at the likelihood of a child someday living independently, overall, I think girls would be seen as more severely affected.  Not every girl, of course, but as a group.

Another difference mentioned by quite a few people was that girls with autism seem to be more social than boys with autism, or they want to have friends more.  They often have good eye contact, and are good at imitating social speech, even if what they are saying is echolalia from TV shows or videos.  This can make them seem more verbal than they really are.  They often want very much to have friends, but aren't sure how to go about it.

In terms of sensory issues, there's a LOT of girls that do have severe sensory issues, but many also that don't.  They seem less bothered as a group by noises, and often are less picky eaters than boys with autism.  It seems a few more of them are sensory seekers, which can be an issue in itself---they like things like hot sauce or smashing into things.

Girls with autism often seem to not have the extreme need for routine that boys do.  They are more willing to go along with changes in the day's routine.  This being said, many girls with autism are prone to MAJOR mood swings, which could be wrongly interpreted as being caused by routine changes.  I've talked to quite a few women with older girls that said puberty was extremely, extremely tough, with PMS being almost unbearable.

Many girls with autism are very affectionate.  They like people, and want to be around people they especially like.  I have seen this very much in Janey.  She has a few favorite people, and asks about them constantly.  Other girls also seem to have people that are very, very special to them.

In terms of speech, for the girls that are verbal, nearly every person I've ever talked to has told me their girls use a great deal of echolalia.  A very lot of their speech is scripted in some way, but often used very appropriately.  For example, if they want to say they are sorry about something, they might say "I'm terribly sorry I disturbed you", a line from a video they've watched over and over, but also pretty much saying what they want to say!

Another point a lot of people noted is that their girls don't have special interests as much as boys they know or have heard of.  Many, many boys with autism have a very major special interest---trains, dinosaurs, drains, bridges, whatever---but I have not heard of many girls that has an overriding interest like this.

Although there are many, many more traits I'd love to have people tell me about, there is something odd I've noticed from pictures I've seen of girls with autism.  Many of them look alike.  It's hard to put my finger on, because of course girls with autism come in all kinds of colors and hair tones and heights and weights and so on.  But there is somehow a look they share.  It's a beautiful look!  But there's more to it---a way they smile, a look to their hair, a way of holding themselves---that just makes them look a bit like relatives.

The biggest difference between girls and boys with autism, as you might have guessed from the name of my blog, is that autism is rarer in girls.  The CDC says that 1 in 42 boys have autism, while 1 in 189 girls do.  That makes autism almost 5 times more common in boys.  Way back when Janey was first diagnosed and I was picking a name for this blog, I went with Rarer In Girls.  Rare can mean several things.  Maybe for tonight, I'll go with the 3rd definition that came up on a quick Google search for the meaning of the word---"unusually good or remarkable"  Our girls, I think we can all agree, are remarkable.

A thankfully rare memory of rude people!

Janey's brother Freddy has been attending an after-school support group for siblings of children with special needs, run by a fellow student.  I am so happy he's getting a chance to talk with other kids who truly understand what life is like for families like ours.  The leader of the group asked him to write about a memory that stood out from his childhood involving Janey.  He wrote about a time I remember vividly.  Here's what he wrote...

Going out to public places has always been one of the most difficult things to do with my younger sister. When she was around 6 and I was 13, we went to a fast food place simply because my sister doesn't do well with long waits. My sister was just being herself, quoting the TV shows she likes, repeating nursery rhymes, and occasionally joyful outbursts. She wasn't bothering anyone, or so we thought. At the table next to us, there was a family of people from another part of the country with two children, a boy and a girl, under 10. I'll never forget the way they looked at my sister. They stared at her and exchanged whispers, as if she were some sort of alien. Instantly, I felt extreme hatred towards them. Jane is my sister, how dare they even look at her like that. Of course, they may have just never seen an autistic child before, and they were "interested" or something, but I couldn't take it. I had to get us out of there, because I couldn't take another minute of their stares. When we got into the car, my brother and mother felt the exact same way I did. We had just as much right to eat at that place as they did, and they were staring at us like our hair was on fire.
Don't get me wrong, this didn't stop us from eating out. Luckily, most people in Boston are quite tolerant of special needs children, but I have no tolerance for those who don't.

 I remember so much about that awful meal.  The family was talking loudly at first, before they noticed Janey, and we heard all about how they were vacationing here.  Janey was being so good, I was thinking at the time.  She was sitting nicely, eating, and talking away.  We loved then and love now when she gets into one of her fairly rare talkative moods.  As Freddy said, she was quoting all kinds of shows, singing a bit and perhaps now and then making a happy noise.  The family suddenly got very quiet.  They all started staring at Janey.  This wasn't any subtle stare.  It was an all-out stare, like, as Freddy said, they were watching an alien being.  Then they started the whispering---taking a look at her, whispering to each other and then taking another long look.

What upset me most was that the adults (what looked like a mother and grandmother) were fully involved in this staring and whispering, just as much so if not more so than the kids.  I remembering hoping against hope that the boys were not noticing what was going on.  However, before we finished eating, they both asked to go.  I was happy to.  We gathered up our food and went to the car, Janey happily holding our hands.  For once, I was very glad she was oblivious to all that was going on.

In the car, both boys burst out in anger.  They were furious at the family.  And I found myself completely unable to disagree.

What strikes me is how unusual this scene was.  I've had people say something nasty to me about Janey maybe three times ever.  I've had people notice her and look sad somehow.  I've had people ignore her.  But I don't really think I can ever, ever think of another incident of people staring and whispering.  And that is good.  Maybe Freddy is onto something.  Maybe the greater Boston area is a good place to have a child like Janey.  Bostonians are fairly tolerant.  They are also generally not whisperers, I'd say!  If they have something to say, they say it.  Maybe this family felt it was more polite to stare and whisper than to smile at us, to let us know that they saw Janey was unusual and to talk to us about it.

I'm thinking in contrast of something that happened this weekend.  Tony and I were at a Dunkin Donuts with Janey, and she ran away from us and went to a table where a man and woman were sitting.  She reached for the woman's doughnut just as Tony grabbed her and stopped her.  The woman gave us a big smile as Tony said he was sorry.  She asked Janey her name, and Tony said Janey was autistic and wasn't much of a talker, and asked Janey to say her name, which she did.  Later, when taking Janey to the bathroom, we passed them again, and they smiled and waved to Janey.  That was a case where the people obviously realized Janey had special needs, but they acted in such a way that we left feeling happy and included.  It takes so little to do that, and I must say, most people are great in that way.

Memory is funny.  I am not sure why Freddy and I, and William too, so vividly remember that awful family.  I wish memory saved instead the many, many times people have been kind to Janey, have delighted with us in her uniqueness.  They are the people I want to have occupying my memory.

"But there are so many programs out there!"

So often lately, I hear about a new great program for kids with autism.  Sometimes, I hear about it in the news, or someone tells me about it, or I dig it up with some research.  Often, I get very excited about the idea of the program, until I look at the fine print or try to apply, and then find that Janey isn't eligible.  This is not something that just affects Janey.  Autism covers a HUGE range of behaviors and abilities.  Saying that a program is for children on the autistic spectrum pretty much says nothing.  It's the fine print that figures out WHICH children the program is for.  But the general public would certainly be excused in thinking that any parent of an autistic child could pick and choose from tons of exciting opportunities.  

I want to emphasize I know how lucky I am to be living in the time and place I am.  There ARE opportunities for Janey.  She goes to a school program designed especially for children like her.  She gets speech therapy, occupational therapy, swimming lessons, music therapy and more---all at school.  She has a terrific teacher.  Last summer, she went to a camp that I can never, ever say enough about---Camp Fatima---a dream camp.  I am grateful for all the help Janey gets.  And many of the other programs we aren't eligible for, I might not want for Janey anyway.  But I just wanted to illustrate that just because you hear of a program for children with autism, it doesn't mean that ALL children with autism can participate.  Here's two examples---

The Boston Conservatory has a program that gives lessons in music instruments or voice to children on the autistic spectrum.  The program sounds incredible---read about it here--and I eagerly went to their FAQ page to see if Janey would be able to access it.  Well, this line stopped me cold "Yes, students must already possess basic proficiency (i.e. can play without hand over hand instruction) in their instrument" ,written as an answer to whether the children had to have prior experience.  So, basically, this wonderful program is available only to kids on the autistic spectrum who have already had lessons---kids high functioning enough to have been able to be taught the basics of their chosen music area already.  And they must have been able to do on in regular classes, as the page says this new program is the only of its kind in the country.  It also costs $1000, which isn't so much the issue---not that we have a thousand dollars lying around to spare, but if the program was open to Janey, I would brave hell or high water to find that money somehow.  But---it isn't.

And here's one where Janey was too HIGH functioning.  I heard about a study being conducted here in Boston to help children with autism acquire language, using new techniques (read about it here).  I registered to be considered for the program, and got a call yesterday from a very nice woman who told me all about the program, which sounded wonderful---very intensive and innovative.  I kind of had a suspicion here that Janey would not qualify, though.  The program is for children called "minimally verbal"  I would consider Janey to be minimally verbal, in that she doesn't talk except for simple requests or echolalia, with very rare exceptions, but I do know that that is much more verbal than many kids with autism (and I know how lucky I am that Janey does talk that much)  And indeed, once we were screened, the researcher told me that Janey has too much speech to be included in the study.  I respect that.  It's a scientific study, and she doesn't meet the guidelines.  But I still felt disappointed.  Seven years of speech therapy have not significantly improved Janey's speech, and I would love to have a chance to try something new to help expand her talking.

I could give a lot more examples here, but these two illustrate what I mean pretty well.  I know there are programs which Janey would be right for and other autistic children would not.  But for someone without knowledge of the nuances of autism, it might seem that there are far more opportunities out there than there really are.  That's why it's so crucial that organizations that support autism put their funds into DIRECT SERVICES---not some vague "awareness" campaign or research that might possible help some theoretical child 10 years in the future.  We need help NOW.

Puzzling Out Janey's Limited Speech

Of all the mysteries Janey presents, the most frustrating one to me is her speech.  Why is it that she doesn't talk more, and that her talking basically never advances?  Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk?  Either way, why is it so hard for her to communicate?

Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it.  Here are the reasons I ruled out, and why...

Inability to produce words verbally

That one is easy to rule out, because Janey can say anything verbally.  I know this because she DOES talk constantly, using delayed echolalia.  Janey can recite the full script of movies and TV shows she's seen years ago.  She can say several Three Stooges skits line for line.  She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing.  She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.

Lack of vocabulary

It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words.  But that doesn't seem to be the case.  The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words.  She knows amazing amounts of words---mostly nouns, but some verbs and adjectives.  She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more.  We have watched her do this in amazement several times.  She KNOWS the words.

Lack of understanding of spoken language

This would be more of a contender until recently.  But Janey has shown more and more how good her receptive language is.  The best way she shows this is by following complicated instructions.  She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own).  I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa.  I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus.  She knows what we are saying.

Lack of desire to communicate

I don't think this is it.  Janey asks us for things all day long, and often she is frustrated that we don't get what she means.  For example, her most used phrase for about a year now is "Snuggle on the bed"  However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others.  She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.

So----Why?  Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did?  Why, despite years of speech therapy three times a week, has she made no progress that lasts?  I don't know.

Many people have suggested augmented communication for Janey, like a speech program on the iPad.  I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested.  She isn't, not one tiny bit.  In fact, she now gets angry when she sees me showing them to her or even using them around her.  She immediately grabs the iPad and switches to something else.  Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it.  Janey is HUGELY sensitive to noise and sounds.  She is an auditory learner, unlike many kids with autism who are visual learners.  I think this makes AC doubly tough for her.  She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music.  So it seems like we are stuck with trying to get her to talk to conventional way.

I wish very much I could figure out how to help Janey with talking.  However, I am starting to feel it's not going to happen.  I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either.  Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so.  I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand.  I'd stop striving for more if she were happier.  But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking.  And so I will keep trying to figure it out.

The Many Meanings of "Snuggle on Mama's Bed"

When your vocabulary is pretty limited, as Janey's is, words and phrases have to work overtime.  They have many, many meanings.  This is something it's taken me quite a while to get a handle on, especially with Janey's very most used phrase, "snuggle on Mama's bed!"  You'd think that was a pretty straightforward thing to say, that it meant, well, "I want to snuggle with you on your bed, Mama".  However, it rarely means just that.  Let's run through about 5 of the most popular actual meanings!

1.  "I want you to stop doing what you are doing"  This one is most often used when I'm on the computer, which Janey hates.  She'll come over, issue the famous phrase, and that means I'm supposed to get up immediately.  If I do, and I go to my bed to snuggle, she usually ignores me there and goes back to whatever she was doing.  But if I then try to sneak back on the computer, she notices right away and comes over and repeats the phrase, with a lot more vigor and anger.

2.  "I want you to leave me alone"  This meaning is one I've just recently figured out.  It comes up when we are ALREADY snuggling on Mama's bed, or elsewhere.  It means she wants me to go find my own place to snuggle, and leave her alone on the bed.  It often comes up in the middle of the night, when she has decided she doesn't want to sleep in her own bed, but doesn't want us cluttering up OUR bed either.  She wants room.  She wants to be by herself.  Figuring out this one was a breakthrough, as it always confused me very much that she constantly asked to snuggle when she was in the middle of snuggling!

3.  "I am upset and I need comforting"  This one is pretty easy to figure.  If a video isn't what she wanted it to be, or if we are ignoring her urgent requests for bacon or ice cream or the like, she wants to reset the scene and to get some help calming down.

4.  "I want to replay something very specific we did at a past time"  Since we spend so much of our time snuggling on Mama's bed, and since I often try to sneak in a little learning during that time, I often read to Janey on the bed, or pull out a bag of toys (I keep a few near the bed) to spark conversation, or recite nursery rhymes, or sing to her, or whatever I can think of.  There's a big variety.  If one of those activities was something Janey really liked, she will ask to snuggle in order to get me to do that activity again.  The problem is that she expects me to know what one she is thinking of, and doesn't like it at all when I don't.  Sometimes she's give me a few cues, usually by picking up a toy or handing me the book, but other times, she just starts screaming because I have no clue what I am supposed to do.

5.  "I don't know what to say, so I'll just throw out a phrase I DO know how to say"  I think this is a very common use of the snuggle phrase.  It's one of the few phrases Janey says with ease, and when she wants to communicate something but has no idea how, or when she just wants to connect, she'll toss out a snuggle request.  It's familiar, it's easy, and it usually gets SOME kind of response.

I wish there was a way to get Janey to talk with more variety---I wish it with all my heart.  It must be so extremely frustrating to have to rely on so few phrases to say so much.  I don't know how to help her with this effectively.  I often say back to her what I think she REALLY means, trying to give her the words---"Oh, you want to be ALONE on the bed right now!" or "You are upset and need some attention!" but this doesn't seem to lead to her using those phrases herself, although she will look happy I'm getting it.  I know I am very fortunate that Janey talks at all.  Many kids at her level of functioning don't, and I never take her talking for granted.  I love to hear whatever she has to say, but I wish for her that she could better say what she means, or even that we dense adults could better understand her meaning.

Mockingbird Monologues

We have a mockingbird living in our yard, and now and then, we are treated to his song.  If you've ever heard a mockingbird sing, you know how cool it is.  He sings for a long, long time, with little bits and pieces of all kinds of other bird songs and noises, and sometimes things like car alarms and squirrel and cat cries.  It's quite something to hear.

Last night, Janey barely slept, and she was in one of the the moods where she talked and sang non-stop.  All the talking was delayed echolalia from assorted videos, and the songs were like an iPod set on random---every genre, mood and rhythm of song coming up one after another.  Although I was collapsing from tiredness, for some reason I was struck by how very cool, like the mockingbird's song, Janey's monologues like that are.

Imagine a child who very rarely says much except the simplest phrases----"Snuggle on Mama's bed!  Ice cream, please, ice cream!  No, Mama!  Don't brush your hair!"  And then imagine that same girl using words far beyond any in her regular vocabulary to recite dialogue "Well, I don't call you a narrator!  I call you a big old secret teller, and I'm kicking you out of this story!"  or "What's the difference between a lie and a fib?  Well, a fib is just not quite telling the truth.  A lie, well, that's just a lie!  Why do you ask?"  "What's a top 10 countdown?  It's when you pick your ten favorite songs and count them down, starting at 10 and going to 10!"  Those quotes from Mickey's Magical Christmas, Angelina Ballerina and Elmo's Top 10 Countdown were ones Janey said in rapid succession last night, all with perfect diction and expression.

Then imagine a child who often screams for hours, who is not toilet trained, who is in many ways severely intellectually delayed, and imagine her singing these lyrics, perfectly in tune...

Oh, it's a jolly holiday with you, Bert
Gentlemen like you are few
Though you're just a diamond 
in the rough, Bert
Underneath your blood is blue!
You'd never think of pressing 
your advantage
Forbearance is the hallmark of your creed
A lady needn't fear when you are near
Your sweet gentility is crystal clear!

Forbearance?  Gentility?  How does it all work?  How is it possible that Janey can sing like that, and sing with expression and style, not at all robotically?  And then switch to "Pumped Up Kicks", then to "Rhinestone Cowboy", then to "Angels We Have Heard on High", to name just a few, all sung, to my ears anyway, perfectly?

Is Janey like the mockingbird?  Is there some little genetic piece of code we share with them, that is usually hidden, but in Janey, is expressed?  Does the mockingbird understand what it is singing and saying?  Does Janey?  I don't know.  Does it matter?  It does, I think.  Echolalia takes up so much of Janey's time that I want to understand it better.  Is it meaningful to her?  Why is it something she does so much of?  Should I discourage it, or embrace it?  Is it just an odd little quirk, a strange autism trick, or is it how Janey wants to talk?  I read the recent article that made the rounds about connecting through Disney, and I can understand that, but Janey's echolalia is different, her particular form of autism more isolating.  She doesn't enjoy sharing her echolalia.  She doesn't like to be joined in her singing or her reciting, not at all.

On some days, I just relax and enjoy the monologue.  On rare occasions, I just let myself be awed by Janey's mind, however different than the mainstream it might be.  Once in a while, I just love hearing her surprise me with her version of the mockingbird's song.

Reading to Janey

I didn't have a lot of preconceived dreams about what being a mother would be like before having kids, but I had one very strong one!  I dreamt of reading to my kids.  I had all kinds of fantasies about how we'd pick out a huge pile of library books and read them all, and go back the next day and get more, and how I'd have to negotiate about how many bedtime stories I'd read, all the while being secretly thrilled they wanted more than there was time to read.  Well---like most parenting fantasies, this one never came to pass.  I read a fair amount to the boys, but it was never as big a part of their lives as I'd wished, and neither of them read much for pleasure.  And Janey---reading to Janey---well, it's different than what I pictured.  But I'm starting to realize it still can be a great way for us to connect.

The first thing that has to happen with Janey and reading is that she has to love the book.  It's very hard to figure out what books she is going to love.  Her choices seem pretty random to me---a Wo Wo Wubsey book about tails?  A book about a dog encountering different sounds?  A random clothes catalog?  I can pick out a book I'm sure is going to be something she'd like, and she firmly closes it the minute I open it.  I have to go with what she likes, for whatever reason.  Right now, the book she's picked is a book of nursery rhymes, with very simple versions of the rhymes and with embossed pages.  (here is is, if you are interested)

Once we have the book, there's the reading.  But it's never a straightforward, read from beginning to end, read all the words reading.  Instead, after I read a few words, Janey grabs the book and closes it.  Then, if she really likes the book, she re-opens it, finds the part she likes and hands it back to me, saying something like "Humpty Dumpty!" which means I am to re-read that part.  I do, and often she points to it again.  I read it again.  This can go on for 10 or 15 rounds.  After a while, before I go insane, I quickly sneak in another rhyme.  That usually causes the book to get grabbed and shut.  But then, sometimes, when she reopens it, it's to request the rhyme I snuck in.  It has to be her idea.  And so we go on, sometimes for a long time.  We might only read 4 or 5 of the rhymes total, but we read the heck out of the ones she likes, and she is delighted.  She loves hearing them, and doesn't get bored.

I used to get very frustrated by this type of reading.  I felt like all we were doing was sort of a form of echolalia via my reading---I was doing the echolalia for Janey.  But I've tried to get a new attitude about reading.  The point, with Janey, isn't really to read a book.  It's to interact, and when we do our reading routine, we are interacting.  Janey is communicating what she wants to hear, I am spending time with her doing something we both enjoy, she is very possibly connecting the words I often put my finger under as I read with the sounds---she might be learning to read.  And she is happy.  She is getting joy out of a book, and isn't that the point?  I have had to adjust my thinking about books quite a bit.  Books can be like toys, and in fact Janey is much more likely to interact with a book than with a traditional toy.  Wasn't that my dream, in a way?

My mental list of dreams for Janey is not long.  I hope she is happy in life, and safe, and loved.  But I will admit in that list is a strong hope she will learn to read well enough to read on her own, to enjoy reading.  She can read a little---we have seen that despite what I think is her desire for us to not know she can.  But if I ever see her sit down with a book and read it to herself, well, that will be a top ten lifetime moment for sure.

The Huffington Post article

Last week, I was interviewed for an article about autism in girls by a reporter from The Huffington Post.  Here's the article--- link.  Being interviewed was an interesting experience!  It was much more nerve-wracking than I had ever pictured it being, not because of the reporter, who was very nice, but because I think I do better writing things down than talking about them live.  I can think about what I write here, but when talking, that internal edit has to be done much more quickly, and I kept worrying I'd say something wrong.  We talked about a lot of things, but the quotes in the article of course were mainly about the thrust of the topic of the article---how autism in girls is rarer and sometimes less easy to see.  I told the reporter before the interview I wasn't sure I was the ideal person to talk to, because Janey's autism isn't subtle.  Strangers on the street can diagnose her.  But the article is actually making me think more about why Janey wasn't diagnosed until she was past 3.  I don't think she was autistic before that.  I think she regressed.  But I know, from what I allow myself to think about before she regressed, that there were subtle little differences in her.  She talked much more to me than to others, and even close friends have told me they questioned how well I said she could talk.  She had a few odd behaviors, and once in a long while, I'd have a moment of wondering---is all okay here?  And there was her very, very late walking.  She didn't walk until she was past 2.  Was that just slow physical development, or something more?  It's very possible that her being a girl gave me just that extra bit of blindness to what was coming.

One thing I did want to clarify from the article is it saying Janey is non-verbal.  I didn't say that to the reporter, but I can understand why she might have thought it (if she didn't read my blog much).  Janey is certainly low-functioning, and a lot of autistic people who are low-functioning are also non-verbal.  But Janey does talk.  She is not really very FUNCTIONALLY verbal, though.  Her talking is of a limited kind.  She requests things, which is great.  Most of her talk is in this formula "I want bacon.  Bacon, please.  Bacon"  You can put anything else in the place of bacon, but she say it in that same way every time.  The rest of her talk is mostly delayed echolalia.  She recites parts of videos, TV shows and sometimes things people have said live to her.  Sometimes, she does this in a way I call in my head "cut and paste" talking.  She picks from her store of lines something that has relevance to what is going on.  For example, if she's made a mess and we are cleaning it up, she says a line from Kipper "I can't play with you right now.  I'm cleaning up YOUR mess!"  Or if she's in a hurry to get something to eat, and we are taking too long, she says "Wait for the milk!  Wait for the milk!", another Kipper line.  Janey also sings a great deal.  Her singing has never been affected by her autism, in that when she regressed in other ways, it didn't seem to affect the musical part of her brain.  She can sing probably thousands of songs, in perfect tune and with all the lyrics.  It's never done on command.  She's like a iPod set on random, with a song she might have heard years ago suddenly popping up.  The exception is Christmas carols, which if I start one, or even just say the name, she'll usually jump in and sing.  Her love for Christmas music is a huge part of her life.

If you are reading this blog for the first time after finding it from the HP article, welcome!!  I am thrilled and amazed, always, to have people from all over the world reading what I started out as just kind of an on-line diary of life with Janey post-diagnosis.  It's turned into something more---a way for me, and I hope for others, to feel less alone, to know there are others out there with autistic girls, all of us doing the best we can.  I hope if you are new to this sometimes lonely journey, you will find a place here to help just a little.  I'm thinking of all of you, and, on this pre-Thanksgiving day, thankful to all who journey along with me.

An evaluation

Yesterday we took Janey for an evaluation at a local hospital.  :The road to this evaluation was long.  I had gotten a recommendation from an ABA supervisor at Janey's school.  We were looking for a team that would work well with the Boston schools and Janey's school in particular.  The previous evaluation we had for Janey through our health plan featured a strongly adversarial approach to the schools, with the words "catch them in a mistake and then we've got them" being used.  I really didn't like that.  I love Janey's school.  I am not ready to move her to another school.  I believe in inclusion.  So I wanted to work with professionals who accepted that and would go from there.  My pediatrician took a long time to give me the referral I needed for this evaluation.  I can understand that some.  He is committed to the team their own health network uses, which I think he was part of setting up.  And the hospital we went to yesterday is what was once known as the "city hospital", the hospital of the poor and uninsured.  It still is that, to some extent, but that is not what is important to me.  I wanted a place where public education was embraced, not seen as something to get out of however you could.  Anyway...a long introduction to how we ended up where we were.

Janey has been in a super good mood lately, and yesterday was no exception.  I could tell she was a little nervous being in a totally new place, but she loved all the elevator rides and was happy in the cheerful waiting room.  When we got called in, she eagerly went with us.  The evaluation was done by a developmental pediatrician and a 3rd year or maybe 4th year medical student---whichever is what is called a "fellow", although they were both women!  And they were great.  Right away I got a feeling that they got Janey and us.  They seemed to have a sixth sense about Janey, and saw that she was taking in a lot of what we were saying as we did some background talking.  So often, I find that professionals talk right in front of Janey about big issues, including things like residential care.  They seem to not realize how much more Janey understands than she lets one, but these doctors got it.  They had done a great deal of background reading of all sorts of documents we and the schools gave them, and so we didn't have to repeat a lot.

They started the evaluation with seeing how Janey's academic skills were.  As I would have guessed, Janey didn't show much of any of them.  :She identified a "B", but that was about all---she wouldn't count, or say any other letters, or show that she knew her name written down, or anything.  She was cheery, but not interested.  So they pretty quickly switched to non-verbal stuff.  Janey easily did a shape puzzle, and sorted circles of different sizes and colors into piles, and separated spoons from sticks.  She worked VERY hard at some nesting cups.  The doctor took them apart and asked Janey to put them back in the nesting pile, and Janey kept at it for about 5 minutes and finally did it!  I was impressed with her determination, although I know that's a skill that most 18 month olds can do with ease.  But Janey kept trying---she would get them in all except one, and the one was too big, so she'd take them back apart and try again, sometimes trying to put them in upside-down or trying to push them hard, but she finally got it!  She lost interest in the evaluation after about 15 minutes, and they let it end there.

During the testing, Janey was showing her personality a lot!  She sang bits of several songs, and she did a couple echolalia phrases.  One was from "The Goofy Movie", and said something like "That will create bonding between a father and a son!"  The doctor saw how it tied in a little to things we had been saying about our home life, and was impressed, I think.

After the testing, the doctor said that although the literature says it's possible to accurately test the intelligence of kids with low functioning autism, she doesn't really think it is.  They are not motivated to show what they know in order to impress anyone, and they only will participate if they are interested.  I agree about that.  She said she felt like she had gotten a good sense of who Janey was, and I think she did.  And then she said something that meant a great deal to me.  She said "You know, I really like Janey!  She's a great kid!"  She said it in such a way that it didn't seem like a line, like something she said to everyone.  She said it like she had seen what we see, what people at her school see, that she is a pretty cool girl, an interesting person.  That is what was noticeably absent at other evaluations and medical appointments Janey has had---the sense that she was seen as a person, as a cool person, not just as a case to be figured out or a problem to solve.  I felt like hugging the doctor.

We got back next week to get the feedback about the evaluation (without Janey there).  I am eager for that.  I know basically how Janey stands---I'm not going to be shocked by anything I hear, but the big thing I was going for with switching to this team is having someone to work with for the long haul.  They said at the end of the appointment that they want to follow Janey as she grows up, to help us get the help we need.  And the doctor summed up in a few words what is is we want for help.  We want to be able to have Janey happy, to be able to enjoy her and have her enjoy life, to be able to have a home life that is happy for her AND for us.  That is exactly what we want.  We are not aiming for Janey to learn academics much.  We aren't aiming for her to be able to live on her own, or hold a job, or achieve amazing breakthroughs.  We want her to be happy, to enjoy life, to be a full part of our family.  That seems so simple, but it's so helpful to have pinned down just what we need help with.  And I feel some optimism that with this team and her school and our family working together, we can achieve that happy balance.