Search This Blog

Monday, November 25, 2019

"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.

Thursday, November 7, 2019

Anyone else?

I've been wondering lately about quite a few traits, issue, habits and the like that Janey has---wondering if other kids like her share them.  Among the many thoughts I have about the whys of autism is that there is a genetic syndrome of some type that a lot of girls with autism share.  I don't know if that's the case, but even if it's not that, I thought I'd do a post to ask "Anyone else? Have you noticed these things about your child?"  

Lack of strong hand preference

Janey is usually right handed, but sometimes she'll use her left hand for things.  I noticed the other day when she was eating a bowl of pasta, she started out for about the first half holding the spoon in her left hand.  She switched in the middle, but it's not uncommon that she seems to pick a hand at random.  I think it's harder for her to do things with her left hand, but she doesn't always seem to realize that automatically.

Sleep issues that rotate
Most kids with autism seem to have some sleep issues, Janey included.  But we've noticed hers seem to go in waves.  She'll sleep a pretty normal schedule for a few weeks, then have a lot of insomnia for a while, staying up all night sometimes and other nights sleeping only a few hours.  Then she might switch for a while to going to bed very early and waking up in the wee hours, like 1 or 2 am, and not going back to sleep.  After that, she might have a period of sleeping a huge amount---12 hours at night and also taking naps.  Then, maybe going to bed very late and being very hard to wake in the morning.  Each pattern lasts a while once it starts.  

Speech that varies in frequency and clearness widely

Kind of like the sleep, Janey's speech goes through cycles.  We'll have a few weeks where she talks much more than usual, and says things we haven't heard before.  Then she might have a while of rarely speaking, and only using a few set phrases.  In addition, sometimes her speech is crystal clear, but sometimes it's almost impossible to understand, very slurred, or she might leave out parts of words.  The echolalia speech is off and on too.  There are times she quotes videos almost all day, and other times she does that not at all.

Lack of menstruation

Despite seeing specialist and having lots of tests, we still have no idea why Janey doesn't get periods.  She had one, at about 11, and a few other very very light ones around then, but since then, not at all.  She has developed normally otherwise, and looks her age if not older, but she just doesn't get periods.  I haven't really heard of other girls with autism having this issue, and I'd be very interested to know if others do, or if this is just a totally unconnected issue.

Odd eye movements

Once in a while, Janey's eyes roll up in her head, and she stares at the ceiling, and doesn't seem to be able to stop doing that for a spell of 10 or so minutes.  She sometimes gets very upset when this happens, and screams.  We have taken her to a neurologist, who says this is not a seizure---a seizure wouldn't involve both eyes.  This seems to happen more in the evening, when it's getting dark but isn't completely dark.  

Very healthy or overwhelmingly sick

For the most part, Janey very, very rarely gets sick.  She can go whole school years without missing a single day due to illness.  She doesn't seem to get the colds or stomach bugs that are going around.  However, the few times she has gotten sick, she's gotten VERY sick.  One time was the awful burst appendix, after which she got pretty much every complication possible and was in the hospital almost a month.  Another time, she got the flu and pneumonia, had extremely high fevers and was in the hospital for a few days.  At that time, some doctors said they wondered if there was something odd with her immune system, something that fought off most all illnesses but caused the few that did get through to be quite severe.

There are other things I could list, but I'll stick with those for now.  I'd love to hear from anyone about these!