Robot Tea

Finally, we have shaken off the inertia and will begin some forward motion.

We have been assigned an FSCD caseworker. We have scheduled a meeting! Wheee!

The SLP at Noel’s school apparently observed him last week, but we’ve been playing phone tag so far.

I’ve signed us up to take part in a research study with the Sinneave Foundation that focuses on what it’s like parenting a child with ASD. The last few weeks my answer to that question would have been “hell” but surprisingly, even with Kyle out of town since Tuesday, my mind has changed, and now I can see a bit of the sun again, peeking out from behind my stormclouds.

Noel was a skeleton for Halloween. He loves for us to name the bones he has – skull, shin, ankle, spine. For the first time ever, I made his costume and I think it turned out rather nicely. Holland was a storebought Garden Gnome. I would share photos but I have a new computer and I can’t upload photos as the drive has not been mapped for me.

***

It’s funny what a difference 24 hours makes. Because where yesterday, before Holland awoke from her nap and interrupted me mid thought, I was feeling optimistic, today I am back, right back, into the claws of grief.

Current stage? Anger. Didn’t I go through this one already? Who knows.

Anyways. My mom arrives this evening to stay with us for a little one, and I am determined to help her have a good visit. Determined.

I have been horribly neglectful of this poor blog.

What have I been doing? Well, nurturing my new baby .

And trying to figure out what the hell to do about H1N1.

And wondering when things are going to come together with regards to funding for Noel to start getting some real help.

And wondering why I ever thought a two week long semester break from school in October was a good thing. (the first week was horrible, the second was fine as Noel attended day camp)

And painting bones onto Noel’s skeleton costume for Halloween.

And fighting off.. something.. that makes me kinda sore and tired and a bit coughy.

And treating Holland’s ear infection (and being completely stunned by our family doctor, who acted like I had not previously told him about Noel’s diagnosis and was totally onboard. WTF?)

And turning 28.

And trying, and failing to catch up on all the blogs I read.

And trying to remember to breathe.

In August, my mom sent me a copy of the May/June 2008 AAMFT Family Therapy magazine, which was focused on autism.

She sent it inside a gift bag that contained Holland’s first birthday gift, and so I happened to pull it out of the bag in front of all of the party guests, realize what it was, and quickly cover the word ‘autism’ with my hand when I held it up and made a silly joke.

Then I placed it, face down, on the desk in the living room and ignored it. I would glance at it from time to time, but didn’t feel like I could pick it up.

A few weeks ago, while we waited for Kyle to return from a corporate function, the kids settled in watching a DVD from the library, ham, cheddar and brocolli quiche bubbling away in the oven, I started to flip through it. There is a lot to wade through, including dozens of website resources that I may or may not get to anytime soon.

But what stood out for me, today, was the article by Chantal Sicile-Kira, called The Affects of Autism in Families and Partner Relationships.

It has been estimated that the divorce rate is in the 80% range in families with children who have an autism spectrum disorder.

Eighty percent. Eight Zero. I am stunned at the number at the same time that I am not surprised. The challenges of parenting Noel are extraordinary. There is no time alone, no emotional energy left at the end of the day to offer one another. There are sharp voices and anger. So much anger.

But we’re in this together.

Last weekend we celebrated our 5th wedding anniversary. And I wanted to revisit our vows, just to remind me.

I will remember that love is not only an emotion, but an action, and I will love actively as a result.

I will do the work required to honour this commitment, making decisions that honour both of us and sacrifices where I can.

I will always value the difference you make in my life and never take our constant presence for granted.

I will laugh with you joyously, I will cry with you honestly, I will listen to your confessions and answer your questions truthfully. I will bare every part of myself to you.

I will respect your beliefs and ideas about spirituality and God, understanding that faith is personal.

I will always remember that you complete me, and have made me who I am today.

I will strive to make our home a place where communication is open, new ideas are welcome, respect is never an afterthought, and where love is evident and ever present.

I will turn to you for strength when I am weak, and will give you my strength when you are in need.

I will respect the promise of fidelity that is implicit with this marriage.

I will know that death will not part us, for to live in the hearts of those we love is never to do die.

I will love you, unfailingly, each and every day.

I tend to this blog similarly to the way I’ve been parenting lately – largely absent, with occassional bursts of inspiration to do better.

Yes, I will admit it, as hard as it is to put out there in the universe, that most times when I am with my children, doing the biggest, most important job of my life, I escape to a place inside my head that is quieter, and calmer, and not so filled with.. with what? Disappointment, maybe? Whining, certainly. And not nearly so many free flowing bodily fluids.

I know that Kyle notices when I have zoned out. I worry that Noel and Holland notice as well, that it will irreparably damage their ability to parent later, that I’m not attaching properly, not creating a good bond. But truth be told, some days I just have no idea how else to do it. If I stay in the moment, I will simply be unable to do this.

Today we went to playgroup, at the bookstore. It was lovely. But Holland was fussy, angry, screaming and crying over not getting her way, and Noel peed his pants, right down his legs where it pooled in his shoes, and I was embarassed. Not of the pee, because I don’t even think anyone noticed. But because of my lack of grace in handling all of it. The other mothers seem to barely break a sweat, and there I am, hauling Holland back once more, huffing and puffing, or attempting to help Noel take off his wet underwear while balancing Holland on one hip in the bookstore bathroom.

I worry that I am cold. That I am hardening my heart for some reason, against my own offspring. Like loving them hurts just too freakin’ much, especially because this is not how I imagined it. I was fool, and I saw something so different than this in my mind. I know I’ve written about this before, but truly, it’s what I feel. Ripped off, maybe. Certainly I feel sorry for myself, and I know it’s ridiculous, and you are all free to call me on it. The logical side of my brain can list off my blessings, can feel amazed at the beauty of my children, and all that they add to my life. The emotional side? Angry. Sad. Unsure. Zoned out.

On Saturday last, we took Noel and Holland to a beautiful, magical little place. One that seemed to soothe everyone’s spirit, which was muchly needed.

As for many kids with similar struggles, crowds are a challenge for Noel. The riot of sound and colour is overwhelming, and almost always leads to a meltdown of epic proportions. So we found a quiet corner in Priddis, at the Priddis Valley Gardens , the labour of love of one dedicated gardener named Kelly.

We arrived to an empty parking lot. Which was a relief. It meant we’d have the gardens to ourselves, at least for a little while. Kelly’s dog, Raymond, greeted us on arrival, tail wagging happily. Shortly after that, Kelly herself came out and said hello, letting us know to enjoy, relax, seek healing and beauty in this space. She found a map for Noel, which thrilled him to no end, as he walked around navigating us through the various areas.

That it’s magic is an understatement. It’s miles and miles away from this suburban life of ours, candlewax and hidden art and so much to take in. And calm. Noel was calm. He was excited, but calm.

As we were leaving, Kelly let us know we were welcome to come by anytime. To bring a picnic and enjoy an afternoon. And we most certainly will, I think.

Once again, I find myself overwhelmed.

It turns out I have been storing all of the anxiety and tension, the gritted teeth and the sorrow, in my muscles. My body is screaming out, using searing pain in my right arm, hand and neck, to tell me that I need to take five minutes to myself. So off to the chiropractor I went. I snuck out at the tail end of naptime, while the household was still sleeping, Kyle clicking silently away on his computer.

My chiro, Greg, was stunned at the stiffness in my hips, my spine, and not at all surprised to learn that there was pain, constant, aching pain. He pushed and prodded and actually gave me some much needed relief, which was.. wonderful.

On my way out, I stopped to chat with him, the receptionist, and the other chiro in the practice. And I mentioned Noel’s diagnosis. Both were quick to tell me that I needed to switch him to a gluten and dairy free diet. I am not certain if my eyes glazed over while they spoke, but I know that I smiled nicely, and nodded, and then made my next appointment and hurried out.

I had time to kill, as Kyle had promised to occupy both children until after dinner, so I made my way through traffic to the bookstore, where I stood, in the brightly coloured, noisy children’s section and flipped through every single book they had on Asperger’s. That new book smell wafting up, the soft clicking sound the pages make against your fingers and each other, and me setting them carefully back on the shelf.

I don’t know why, but I cannot read these tomes of information, advice, therapies and diets. I wonder if I will ever get there. My therapist had a student observe our last session, and she mentioned that the little naysaying voice in my head, and my confidence, appear to be dancing with each other. Back and forth, I am a terrible mother who will not research and ‘cure’ her son, I am a good mother who is doing the best she can.

There is, momentarily, peace in our household. Noel and Holland are sitting side by side on the couch, eating Gerber puffs and watching Treehouse.

The counters are a mess. The floor could use a wash. The playroom looks like a bomb went off. But there is a peace. And so I’ll happily leave all the rest.

***

Last night, while I rocked and nursed Holland in her bedroom at midnight, only the light from the hallway to cast shadows over the crib, the mobile, the art on the walls, I contemplated how each time I pushed the rocker with my legs, that it rubs on my calves. And I wondered, how long would it take for the stubble to rub away? Surely, I must be getting close.

***

I’m thinking about starting a photography business. I feel like an impostor, and can easily talk myself out of it about ten times a day. But I think that I will just dive right in headfirst, thanks to some beautiful encouragement from my dear friend Anna (she’s in my blogroll, under hullabaloo)

***

Oops. The cease fire is officially over.

Last Friday, we took the kids out to Spruce Meadows to watch the Masters.

We ate lunch on the grass – a polish sausage for Kyle, perogies and sausage for Noel and I. After he was finished eating (the grand total of one potato and cheddar perogie), Noel began to dash around, running from us to a concrete wall, then back again, over and over again.

There were two older women sitting on chairs near the wall. Noel was flying past them, to the wall, clearing them by about five feet. I watched the women eye Noel, clearly unhappy with his behaviour, but really, he wasn’t doing anything disruptive, considering we were in a public space.

Noel stopped at the wall to catch his breath, and it was then that I saw one woman lean over and say something to Noel. He looked sideways at her momentarily, then looked back at us, broke into a huge grin and shrugged his shoulders.

It was awesome. Where initially the mama bear in me reared up, she quieted down and I laughed. Whatever she’d had to say to him (and body language told me it was a scolding) had slid right off Noel like water off a duck. When questioned about what she said, he said he didn’t know. I guess that right now I can find a bit of solace in his lack of social awareness – a child who could read expressions and body language better might have been driven to tears being told off by a stranger. To Noel – it was just more noise.

A recent library find, Pete & Pickles, has been the number one bedtime choice in our household for the last 10 days or so. The illustrations are gorgeous, but the story never fails to bring a lump to the throat of the reader, be it Kyle or myself.

The story, of a pig who loves order and the elephant who throws his life into utter chaos, echoes our life so much right now, it could not have come to us at a better time. Though Pete, the pig, reluctantly takes in the elephant, thinks her pastimes quite odd, and then downright disruptive, he cannot imagine the idea of living without her.

…At that terrible moment, what occurred to Pete was NOT how his life had become so unpredictable, so unpractical….and so completely complicated with Pickles.

No, what occurred to Pete was his life without her.

That endless night would be the longest of all their great journeys.

We are on a great journey, one that will undoubtedly be the toughest, and the longest, but in the end, the reward will be great. I have to believe that. And of course, I’m sure it goes without saying that I cannot imagine life without Noel, not a solid, concrete sense. Surely, in the abstract – we could see a movie! We could travel anywhere we wanted to! We could do something spontaneous! it seems all rosy and wonderful, but I don’t even want to start to contemplate the hole an absence like Noel would create. It would make a blank space in my heart, even while that heart is so tired and worn out and unsure, it still swells with all that he gives to us, and all the ways he brightens our days.

Amy & Noel .. and a rock with a flag on it? Yeah. At Provincials this year.

I swear he hasn’t been watching Grey’s Anatomy. But for some reason, Noel finds a kindred spirit in Amy.

Just another one of the ways the softball team made us richer. (Jacob and Amy are both younger siblings of players on the team.)