Hey, where have you been?

I got a message today from a parent on one of the community forums I read.  She said how she could really relate to a post I had written last summer, and I suddenly realized that OOPS! I have not posted anything here in months.

Now, that's partially because we've been really busy, and partially because I've been going through some "personal issues", and partially because - well, let's be honest - I didn't really feel like I had anything worthwhile to say.

Then I realized that when I first started this blog last summer, my intent was to share my experiences / life with an Autistic child.  That maybe, I could reach someone in a similar position and give them some insight or hope.  Or that (even better) someone who has been where we are now might reach out and say "Hey.  This worked/didn't work for us.  FYI."

Since I posted last, we've had a whirlwind of change in our family.  It's going to take me a while to backtrack and put the pieces together, but I am going to do it.  For me, and for you.  Because if you've taken the time to read this, I hope I have something valuable to share.  Hang in there with me, ok?

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. :)

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. 

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)

Adaptability

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!

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.

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.