Robot Tea

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.)

This long weekend we’ve spent in the mountains, which call to me in my sleep sometimes. The promise of relaxation, lazy afternoons spent reading, no errands to run, eating casual, thrown together meals. There’s a certain point along the three hour drive to our cabin where the bustling of the city just slips off, sheds like skin, and you can feel the shift. The air is sweeter, the rush lessened. This is just a place of peace that we’re so lucky to have.

Another thing we’ve been lucky to have – the amazing friends who spent this weekend with us. Six years ago, before we were married, just after we got engaged, we spent the May long weekend here, and it was here that Kyle’s phone rang and he was offered a coaching position in South Bow River.

Just before we had come up, Kyle had spent some time calling different softball districts within the city, indicating he was interested in coaching a team, that he had played for many years and couldn’t anymore due to injury, but that he missed it. And only one district, in a city starved for coaches, took him up on it.

Six years ago, Kyle started on a journey that sort of came to an end this weekend. He started out coaching a boys’ team, but in 2005 the seed of a girls’ team was planted, 8 little girls playing interminably boring games (because back then none of them could hit anything, nor could they pitch anything worth hitting. We’d sit and watch, 5 walks, 5 walks, 5 walks. Occasionally, someone would make contact with the ball, or someone else would catch it, and the stunned look of surprise on their 8 year old faces was priceless.) Through the years, girls have come and gone but by 2006, a group had fallen together who were all the same age, and so they could stay together. Thirteen talented girls who breathed, ate and slept fastpitch.

In January of 2006, Noel was born. These kids and their families have known him since birth. Noel has spent countless hours on the side of a diamond, getting covered in shale, dragging around bats, and being gleefully giggled over by “his girls.” And so this chapter closing in our lives is also very much a part of his story.

But back to the part about amazing friends. When your child plays (or your husband coaches) 2 games a week, and practices 3 times, for 9 months out of the year, you spend alot of time with all the other parents. You spend time wrapped snugly in sleeping bags at the side of a freezing cold field, or baking in the sun on a tournament weekend. Your child’s birthdays are celebrated while traveling with the team, or during mandatory team meetings. You have very little time for anyone else. And you become something of a family.

That’s definitely what happened to the Calgary KAOS. The mothers and fathers of the girls that Kyle has coached are our friends. We have cheered and rallied, had party traditions and gazillions of inside jokes. And we’ve only been the richer for it. Noel and Holland have been surrounded by the love of so many many people, and we have too. And though some days it was a struggle, the incredible commitment of time that Kyle made putting strain on our family life, it was worth it. Because we have come away with a wealth of friendship we wouldn’t have otherwise have. And Kyle has had the opportunity to lead a team that has proven itself to be the absolute best, in the city, in the province, and at countless tournaments, over and over again.

Enjoying a game during Provincials

This weekend the chapter has closed. Many factors converged and led Kyle to decide that he would not continue on with the girls into the Girl’s All Star Program . As of right now we’re unsure if Kyle will coach at all, or if we’ll take the much needed time to focus on our family and the huge obstacles that have suddenly risen on our horizon.Some of the girls will be heading to the program, and some will stay in community ball. Maybe others still will move on to other sports or focuses. And so the KAOS as we have known it had their final season windup. And we’re really, really going to miss them.

Today, I made Holland an appointment with our family doctor, as she’s been very grumpy for the last while, and it’s clear it’s not just teething. (It’s a possible bladder infection, but that’s another conversation and a pediatric urine collection bag type of story.)

While there, I mentioned to Dr. D that Noel had been diagnosed with Asperger’s. He wrinkled up his nose, chuckled and shook his head. “I don’t buy that.”

Some backstory: When I went to Dr. D for help with what was an increasingly disruptive behaviour problem, he brushed me off, told me Noel was just very bright and that he would be fine. At that point, we made the decision to seek private evaluation services.

The problem with him feeling that way? The problem with anyone who knows us telling us that they just don’t see it/don’t believe it/but he’s so smart!!!?

Well, there are two. The first is that whenever someone says that to me, there is a little flicker in the dark, that tiny spark of hope that maybe our diagnosis is completely wrong. And I can’t live that way, the hope renews the grief whenever it sputters out.

The other problem? If there is nothing ‘wrong’ with him, then what am I doing wrong? Where have I failed at being his mother that he is so stuck on routines, so reckless with himself, so emotionally unstable? The idea that we might have made him this way breaks me down.

Kyle spent two hours today at the Autism Calgary office, speaking with the totally amazing family support workers there. When he called and told me, a little twinge of anger flared up inside of me, and I’ve been thinking all evening as to why. And I really think that it must be jealousy – jealous that he was getting support that I desperately feel I need.

This week, in amongst the gloom, there has been a lot of anger. And my poor husband is directly in the line of fire. But I just feel like in order to keep going at all, I have to feel indignant about this particular situation we’re in. Because otherwise, if I don’t get that anger that spurs me out of bed, I’m afraid nothing will.

Today is more of the same. It’s dark and grey despite the blistering sunshine outside. I want to curl up and sleep for months, days, years, and wake up when everything is better.

So have something in colour, instead.

Everything is better with a creamsicle

Yes, I did wrestle her back into her birthday dress for this photo