Tuesday, November 5, 2013

The things I want aren't things.

It's November, which in our family means Christmas Wish List Time.  I've often struggled with asking for things for myself, but could usually cobble together a few books, movies, needed clothing, and other personal luxuries that I wanted. This year, I'm having a very hard time with the exercise. There are very few things that I want, or even need. I'm pretty comfortable, from a material goods standpoint. What I want, what I need, is time. 
This is pretty common among my friends who are stay at home parents - our kids are our job, 7 days a week, 24 hours a day. Even with helpful and supportive spouses and family, we feel responsible for the health and happiness of our kids every waking minute. There's also considerable self-pressure to maintain a (reasonably) smooth-running household. Notice I said self-pressure. It is nearly wholly internalized, and it's far too easy to martyr ourselves to these perfectionist ideals. 
So for my Christmas gifts this year, I am asking my loved ones for the following:

1. A weekly block of time for just me - no errands, no commitments - to go for a quiet coffee or to the library or just for a drive in the sunshine. I want this time to be as strictly honoured as any other appointment on our family's schedule. 

2. A monthly date night for my wife and I, because with our schedules we don't see each other - just us - anywhere near enough.

3. Whole family time, at least once a month, where we can gather for a meal and actually take the time to listen to each other when we ask "how's it going?"

4. Surprise visits from friends. We are pretty much homebodies, especially on weekends. Come see us, or invite us to visit you, with or without kids. It doesn't have to be planned in advance, just call or text and let's hang out. 

See, none of these are things - but they can be. Gift cards for movies, restaurants, foofy coffee places - stick 'em in a card that says "tell us when you want to go, we'll babysit." (and mean it!)

Or, come over and commiserate while I try to organise my yarn stash for the umpteenth time. Troubleshoot / critique my website so I can get my Etsy business launched. Hire a maid service to deep-clean our bathrooms and scrub all the windows. 

I know, this probably sounds whiny and "first-world-problem", but honestly, it's how I feel.  There's no point buying me books I haven't time to read, or fancy bubble bath when a closed bathroom door provokes a tantrum.  The best gifts, for me, are gifts of self. 

And chocolates. :)

Tuesday, October 22, 2013

And now she is 2!

Nyx had her 2nd birthday this past weekend. We had a lovely family dinner on Saturday, and friends came by on Sunday, and it was wonderful. 

So now she's 2. And she's doing 2-year-old things. Things like looking you right in the eye, saying "Don't frow!", and then gleefully throwing handfuls of cookie cutters in the air. Things like saying "No! No! No!... hokay" when told it is bedtime or that she needs to get dressed.  Things like... hitting. Yup, the smitings have returned to playgroup, and she's been hitting at home, too. And of course the question rises: ASD or 2-year-old "normal" behaviour?

But there are terrific things, too. Things like taking a baby doll up to bed, putting it down with pillow/blanket, and saying "All tucked in. You go sweep now." Or singing increasingly-intelligible portions of Wheels on the Bus, No More Monkeys Jumping on the Bed, and other favourite songs. Or expressing a clear preference for Momma, Mommy, or Sissy for naptime/bedtime snuggles. So many of these awesome little moments!

We've started working with our KickStart parent coach, and now we have a clear goal list to work on, in small steps. We have weekly reading and activity assignments, and logsheets to track our progress. It's a bit daunting, but given how far we've come already, I continue to be optimistic. 

Thursday, September 26, 2013

Quarterly Report

It's three months today since I started this blog. Three months since we got the official confirmation of Nyx's Autism. Folks, it's been a wild ride so far!

Over this summer, Nyx has bloomed like a field of wildflowers. She can recite the alphabet, and tell you several words for each letter. She can count to 20.  She knows shapes, colours, animals and their sounds. She has gained the habit of saying "hello" and "bye bye, see you soon!" (ok, she learned that from watching Pocoyo).  She will greet friends by name, gets excited for circle time at playgroup, plays next to (sometimes with!) other kids. She often spends long stretches of time coloring, always with great concentration and ending with a flourish - "PAINTING! PRETTY!" 

Just this past week, she's begun singing along with songs - whether recorded or sung together - and she adds several words or phrases a day to her vocabulary. She's much more relaxed socially. She is HAPPY!

I am, in a word, astounded. I'm thrilled and excited and proud; proud of her and also proud of me, my wife, and our family. We have done this. We are doing things right and it is working.  

I give great credit and so much thanks to the fine team of ladies who first identified Nyx's ASD and who have since guided and supported us: OTs,SLPs, Psychologist, and the half-dozen thoroughly amazing ECEs who we see daily at the Ontario Early Years Centre playgroups. These women have encouraged and comforted me so much, offer reassurance and hope daily. It's like having an All-Star team of childhood development and family support. 

Our family and friends have been equally fantastic. Not once has their been mention of Nyx's ASD as a disability. Everyone's focus is on her intelligence, her wit (she is a funny bunny!), and her outgoing, loving personality. We are all learning and growing together and it is a wondrous experience. 

I'd like to share a picture that I took last week at Circle Time - a picture that would have been unimaginable even a month ago. It speaks for itself. :)

(Nyx is on the left)

Sunday, August 25, 2013


So much of what I've heard and read about kids with ASD is how they crave predictable structured routine and wig out at major deviations/change. So I've been dreading the effect our house-move would have on Nyx. Well, our little monkey surprised me!

For a week now, we've been packing up. Our middle daughter was visiting from out of town. Playgroups were missed. Car trips were short and frequent. Meals were off schedule, bedtime and naps all over the place. Chaos, right?  Kiddo took it all in stride. Minimal fussing, (mostly) easily settled or distracted (although she had a major meltdown this evening when my wife and I both had to go out suddenly and Big Sister had to pinch-hit for awhile).

Most amazing of all, she spent 90% of Friday without me, spent Friday night at her Grandparents' house, and stayed with them until dinnertime Saturday. Didn't faze her. I am blown away at how easily she has handled all this. Even first bedtime in a new bed in a new room was no fuss - music, snuggles, sleep. 

So I guess the lesson here is that as long as she has "her people" and her stuff, she can cope with sudden change pretty darn well. Better, I think, then her parents do!

Wednesday, August 14, 2013

Summer Flies and Butterflies

Checking in, we are having a good summer! My eldest daughter (20) is living with us now, and Nyx adores Sissy! (still won’t say Mama, but I think that’s an “m” issue, nothing personal!). Her language and social/imaginative stuff is really coming along steady now, we see daily improvement. Of course, the closer we get to her 2nd birthday the more we are wading into “Terrible Twos”, but thus far it’s not too awful.

So we met with our OT this morning and she filled us in on how our Kickstart program works. We have 3 sessions with her and 3 with the SLP, and then one with both of them together. These 7 sessions are for them to do a really thorough assessment and offer some guidance as we go, then they turn us over to the Parental Coach (who has OT and SLP training), for 10 weekly sessions where we work through the program step by step based on their recommendations.

At the end of that 10 weeks, we get monthly follow-ups until we get picked up by the public system; we can also continue as much private therapy as our insurance will cover. So we’re not left hanging, which is good to know!

Our OT is very nice, Nyx took to her right away and even hugged her when it was time to go! I feel really optimistic that this team is going to help our family tremendously. :D

In 2 weeks we meet the director of the special preschool for ASD kids; they only have 9-10 spaces so we’re really hoping to get a spot for January, which will follow closely on the end of the other program. Fingers crossed - I think it will be so great for her and I am really stoked at the idea of 3 hours/day, 5 days/week of “off duty” time.

Oh, and and and! We’re moving next week to a big beautiful house with a fenced yard and basement playroom and Nyx will finally get her own room/bed! She picked out her own sheets - pink and green - which go with NOTHING else in the room, but she wanted them and said so! I almost cried in Wal-Mart, I was so happy. :)

Oh, and A.J. Jenkins is my new hero. He does kids' songs for a YouTube channel (which I've forgotten the name of, but you can look him up by name), and they are FANTASTIC!  Our favourite is "Butterfly Song 2", which teaches colours and is soothing and gentle - great for bedtime. 

I’m babbling. I’m happy! I want to hug everyone because life is good.

Tuesday, July 23, 2013

Not the Same Child!

Nyx has been progressing rapidly with her communication the past couple of weeks. She is consistently signing for "more" and "all done" (she says all done at the same time she signs it, which is nice.). She's got most of her alphabet and numbers down, and shapes and colours. She's saying "thank you" and "hewwo/herro" and "Sissy". Animals and their noises are a favourite - her piggy snort is hilarious!  So, great strides. 

A playgroup friend we see occasionally commented on this the other day, remarking, "She's not the same child!"  Well, yes and no. She is who she's always been, and she's becoming who she will be. Just like her seemingly-continual physical  growth spurts, her communication/social growth is happening all the time. I think now we're just paying closer attention. 

I must say I am quite pleased to see her interacting with other kids more in a mostly-appropriate way. She has started sharing toys more frequently with less fuss, and rather than avoiding playmates entirely (or screaming when they come near), she will observe them and take part in lateral play - even if she is still a bit of a bulldozer, now she is learning "gentle with friends", so is pushing gently with one hand rather than a full-on body check!

This progress does seem to have one catch; the better her communication gets, the more frustrated she is getting when she can't make herself understood.   Tantrums are abounding lately. Then again, she's also 21 months now, so "terrible twos" may be imminent.  I'm really hoping the OT and PC will help with some strategies for that in the fall. 

Saturday, July 13, 2013

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. 

Wednesday, July 10, 2013


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. 

Friday, July 5, 2013

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. 

Thursday, July 4, 2013

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. 

Tuesday, July 2, 2013

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. 

Thursday, June 27, 2013

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. 

Wednesday, June 26, 2013

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.