The Ravenous Bugblatter Beast of Traal

If you're a fan of Douglas Adams' The Hitchhikers's Guide to the Galaxy, you'll "get" the above reference. If not, I'll summarize: this is an animal that thinks that if you can't see it, it can't see you. 

Nyx seems to be a Bugblatter Beast in reverse - if she can't see you, you can't see her.  This has become a noticeable habit recently; if visitors drop by unexpectedly, or come into a room where they weren't before, she squeezes her eyes shut and turns her head away from them. This can go on for five minutes or as much as fifteen. She doesn't fuss, just "goes invisible."

It's what's called Avoidance Behaviour and while everyone does it in some situations, for ASD folk it can become problematic. I'm adding it to the list of things to discuss with our therapy team in September. 

Meanwhile, we are trying to respect her need/feelings and not push her to interact with people until she is ready to. It's a little frustrating for everyone, but our friends and family are very loving and supportive and patient. 

Awestruck

We met a lady at playgroup today who was helping a boy at the puzzle table. Nyx started grabbing pieces and the boy was getting upset. This lady said, "ok, our friend wants to play too, let's show her another way", and proceeded to invent a silly "put pieces in box" game that had both kids giggling in seconds, and carried on for a few minutes. 

I was awestruck. She knew exactly what to do!  I made some remark along those lines, and she said she works with Autistic kids. Bingo. 

All I can say is, ASD kiddos who have the opportunity to play and learn with people like this are tremendously lucky. And parents who get the chance to see such skill and obvious enthusiasm at work are rewarded by learning and challenged to step up their own game. 

The First Words I Will Teach My Pup

Nyx, like everyone in our family, is a huge fan of books. A cuurent favourite is the board book I'll Teach My Dog a Lot of Words, which has lots of fun opposites and simple vocabulary. 

My wife was reading the book with Nyx, and paused at the end of the first line: "The first words I will teach my pup are dig a hole and fill it..." "UP!" Nyx finished the sentence!  Very exciting. She can do it with other books, too, and will point to the word "red" and say "red", and "cat" for "cat", and can identify lots of letters correctly. 

I think this is pretty amazing. And then I wondered, is she knowing the words or just remembering them in specific contexts?  And I read a few articles on rote memory in Autistic kids. Bingo.  She's memorizing - which is still learning! - but not necessarily knowing what it is that she's memorized. Or maybe she does. I wish she could tell me. 

Outside Our Comfort Zone

Today, Nyx and I visited a new playgroup. It's run by OCTC (Ottawa Children's Treatment Centre), and is specifically for Autistic kids. Max capacity is 16 kids/adults and there are 3 teachers/assistants in the room. 

Well, we were EARLY - crazy early, after a 5 a.m. wakeup and an errand on the way. It's on the far side of downtown, and I never know how to judge morning traffic anymore.  But the nice folks let us play outside in the centre's playground until it was time to go in, so that was good. 

Nyx took to things right away - fearlessly exploring, as always. She played in closer proximity to other kids than she usually does. She played "pretend to feed the baby doll", which near knocked me on my ass in shock. Note to self: buy baby doll & accessories.

Me? I was edgy. I was watching her constantly to be sure she wasn't doing anything that would upset another kid. I tried to chat with some of the other parents but felt really awkward - and guilty, as some of them are still waiting for assessment/diagnosis after a year or more. 

Circle time was hard. One little guy was screaming the whole time, the songs were different, and Nyx and I were both getting tired.  I'm glad we went but I think it will take awhile for me to feel as comfortable there as at our usual group.  Next time, at least, I'll be better prepared. 

Multiple Choice

Before we got Nyx's ASD diagnosis, if she was inexplicably, suddenly cranky, I figured it was either (a) hunger, (b) tired, or (c) teeth. That's the standard toddler trifecta of rage, right?

Now, I question everything. Is she overstimulated?  Is she too far off routine? Am I pushing the communication stuff too much and frustrating her?  OR - is she just being a regular almost-2-year-old who can be a three-foot towering asshole for no reason whatsoever?  Because that's the kicker right there. She's ASD. But she's still a toddler, and toddlers of her age are known to be hair-trigger psychopaths, by times.  So I'm stymied. 

I've started reading through the first (of many, I expect) resource book that our Psychologist gave us. It's An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn. It's incredibly dense going, because the smallest details can have huge impact. Basically, we need to make lots of little changes - what that translates to is more self-doubt and anxiety about my parenting. (I say "my" at this point, because I can't and won't make assumptions on how my wife feels about it). It's rather funny, in a way, because most parents complain, "If only these darn kids came with a user manual!" That's pretty much what this book seems to be. The catch is, we aren't really sure what make/model/options our little Nyx is, so does the manual apply? I'll post more about that as we go. 

51 Crayons

A few days ago - in fact, the day before we got the official ASD diagnosis - my sister came to spend the evening with Nyx and I.  Nyx loves her Auntie K, they read books together and sing "Head and Shoulders, Knees and Toes", and have lots of cuddles. 

So this visit, Nyx wanted to colour. I explained to my sister that we are working on getting kiddo to take turns, so she learns to wait instead of just grabbing what she wants. They coloured for close to an hour, and after each crayon was selected and used, Nyx lined them up very neatly on the table. 51 crayons.

I know that some ASD kids have these little quirky habits, but this really astounded me. First, that she had the attention span to do one activity for such a long time, and second, that she was so focused and intent on arranging the crayons just so after she finished with them. Astounding. 

Obligatory Intro Post

I've named this blog Keys and ABCs - Autism 101. Sounds a bit prententious, a bit arrogant, even a bit flippant. Quite the opposite. 

Our family is starting out with an ASD (Autism Spectrum Disorder) for our youngest daughter, currently 20 months old. We call her Nyx, which is a German word that means "sprite" or "fairy." She is magical. And she has this disorder, this atypical neurological condition that makes her magical self a challenge to reach. Like a good fairytale, we need to find the keys to Nyx.

We're at the very earliest stage: our ABCs - Autism 101. There is a whole language, culture, world of ASD resources and information. It's overwhelming and confusing. It also gives a great deal of hope, because there IS so much, and more and better information all the time. 

I have started this blog as a way of documenting our challenges and successes as they come, both for our own reference and hopefully to be of help to other families.

In truth, I've also started it because trying to answer the same questions over and over from caring friends and community can get a bit wearing. I love that folks are concerned and interested, but it's very difficult to explain what we don't quite understand ourselves. Here I will try to make things more cogent. 

Thanks for dropping by.