"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.

Every Morning is a Triumph

I just got Janey on the bus, at 6:15 am.  As I walked in the house, I was beating myself up a bit.  Her hair wasn't as I'd like it, she had sneaked some onion and garlic chips and her breath betrayed that, she had on two different gloves, her hastily picked clothes were not the greatest look for her...it was not my finest early morning parenting day.  But then I defiantly told myself---NO.  Getting her on that bus at that hour was a triumph.  It was the kind of triumph all you parents of other kids like Janey have every day.

It was a triumph Janey got a full night's sleep, and woke up without protest.  Sleep is not something any of us take for granted.

It was a triumph that I got Janey dressed.  I felt guilty thinking how I should be insisting on her dressing herself more in the mornings.  But doing so would necessitate getting up about an hour earlier.  We are on a very tight schedule every morning, and I'll take her cooperation over her independence when it comes to quick dressing any day.

It was a triumph I did her hair at all.  I know there are a few tangles.  I hate that.  But as I worked to brush them out, Janey screamed and had the look in her eyes that let me know that if I kept going, there was no way on earth we'd be getting on that bus.  So I resolved to brush them out before bed tonight, and I did my unskillful braid hairdo, and we called it good enough.

It was a triumph I brushed Janey's teeth well---twice.  She allows a thorough brushing without complaining.  The second thorough brushing came after she found the chips while I rushed to get dressed myself.  I think she might still have a little onion and garlic breath, but so be it. I am glad Janey eats breakfast at school, but a little chip appetizer isn't a huge deal.

It was a triumph that Janey left the house with a coat, a hat, a scarf and gloves.  The gloves were two totally different gloves, both right hand ones.  They are approximately the 30th pair of gloves she's had this winter.  She doesn't keep track of things like gloves or scarves.  If I were to buy her a matching set every time an old set disappeared, our entire budget would be spent on gloves and scarves.  So finding two to put on is a win, a triumph.

It was a triumph we were on the sidewalk two minutes before the bus arrived, and Janey was happy.  I had to grab my phone at the last minute so I could put on the SpongeBob songs she currently needs while waiting.  If the connection had been down or if I hadn't been able to immediately locate my phone, we would have had a problem, to say the least.

It was a triumph she got on the bus on her own, and sat in a different seat than usual, as I saw the aide tell her to.  She is like Sheldon on "The Big Bang Theory"---she doesn't care for being made to sit in the wrong place.  But she did, without protest.

It is a triumph that she is off to school.

I think those who teach kids with autism understand the triumphs that every successful morning include.  To anyone else out there who might not, when you see Janey, hair not looking perfect, gloves unmatched, hint of chips on her face, when you see that, keep in mind the triumphs it took to get through the morning.  To the other parents like myself---here's a coffee toast to you. May you have many, many small triumphs today.