Robot Tea

I just reread my last entry and now I’ve wiped the tears out of my eyes and am moving forward. Forward, forward, ever forward. I am a bit worried that if I stop I’ll get stuck in one place.

So I taught myself how to sew and have been making Christmas gifts. And I picked up bottles and stoppers and ordered vanilla beans for homemade vanilla extract. And I read this book in no time flat, have started this one and bought this one today.

I had dessert and chamomile tea with my best friend, and we talked about everything, and I realized just how very much I miss her. Even though she is a literal two minute drive away, we see each other far too little. She is the godmother to both my children, and they are so so lucky to count her among the people who love them.

I booked three sessions for this week, and I am pleased with the results.

I have had conversations with Noel about how he wants a “bump bed”, and laughed at his current fascination with the Discovery Channel, and in particular the show Canada’s Worst Driver. In the car this evening, he started spouting off random facts about that show. “Crystal has her new contact lens!”

I attended a town hall meeting about the new school campus, and then daydreamed on the drive home about the day when we buy our own space out in the country, and build the house I long for, the one with the wrap around porch and wide plank flooring.

I have nursed Holland countless times, sometimes relishing the weight of her body against my side, sometimes gritting my teeth and getting ready for weaning. I am on a fence between the huge benefits to her immune system and the huge detriment to my sanity.

I participated in a study (The Lived Experiences of Mothers of Children with Autism)and I can’t tell you how good it felt to sit down and be able to express some of the frustration we’ve been feeling about the system and the process. A parent should not have to fight for treatment, to struggle and beg for help. It is exhausting enough, as it is.

I have clenched my jaw so many times, during emotional meltdowns, that my teeth ache constantly. I have wanted to cry. But forward, forward, ever forward.

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.

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.

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.

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.

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

I’m feeling sorry for myself today, so please bear with me.

Some days are brilliant, shiny. Some days I can convince myself that Noel is perfect – adjusted, happy, well behaved perfection. On those days, he does not have as many struggles with switches in routines, he doesn’t have an emotional meltdown over something like the shape one cuts his toast into, he is happy and sweet and it’s just a good day. And so, some days, I feel like we could absolutely get along fine, without aides and therapy and assistance.

This was not one of those days.

Last week, we decided to switch Noel from pullups to underwear, because at school he’s been staying clean and dry all day long. So we had Noel pick a date, and we had a party, complete with cake and offkey singing ‘Happy No Diaper Day to you! Happy No Diaper Day to you!’. Unlike a previous attempt at cold turkey, in which Noel gleefully peed all over my carpet several times, it’s been going well on the peeing front. He eagerly lets us know, dashes off, gets the business done. The other half of the equation is not going as well. Big boy underwear casualties? I think we’re at five pair.

But we’d been staying at home, close to the bathroom, and so it was a gross not so big deal. But today I we headed over to Noel’s old preschool for an open house.

Noel’s preschool last year was parented – Holland and I attended with him, the classes were a touch younger, and it was the only option we had since Noel is 19 days off the cutoff date for age requirements. Since he was nowhere near toilet ready, it didn’t matter, and I knew that it would be the best option we had. Holland was tiny when we started – a mere 3 weeks old. I was fresh off my c-section, and so off we went.

Though we’d had our suspicions about Noel’s behaviour prior to this (at about 18 months old we had an Early Intervention evaluation done, and were basically told he was sensitive, but fine), attending preschool really cemented it for me. The teacher reassured me – he will get better at sitting at circle time in a month or two. He’ll get a feel for the routine. He’ll share better. He’ll socialize better. It will get better.

And it didn’t. School was pretty much always an unpleasant experience for me – two hours I spent juggling Holland, breastfeeding, wearing her, while I broke up fights, physically restrained Noel for circle time, and was generally discouraged by how much he didn’t improve.

I don’t know why I thought today might be better. Maybe because there wouldn’t be a circle time at the open house. Noel would be free to play for the entire time we were there. And Holland is older, and much more mobile, so she could play, too, and maybe I could chat with an adult or two for a change.

But no. Today was more of the same. Noel and another boy chased each other in circles, squealing, running, narrowly avoiding the crawling babies on the floor, falling. I stopped Noel multiple times and asked him to stop. Noel’s former teacher asked him to stop. One of the owners asked him to stop. And still it continued. It did not help that the boy who Noel was chasing had a father who was more interested in chatting with another dad than telling his son to stop being wild – every time I’d redirect Noel to a different activity, the boy would be back, goading him to chase him, taking the toy I’d offered away, and Noel was caught back up in the frenzy.

And then he pooped in his undies. Okay, no big deal. I took him into the bathroom, got him cleaned up and changed (while holding Holland off with one hand to keep her from the ever intriguing toilet water) and told him it was just about time to leave.

Once in the car, settled happily with a brownie, he started to cry. He insisted we were driving the wrong way home, because the freeway we were on was just for leaving his new school, not his old school. Then he was crying because he wanted ice cream. Then because he wanted macaroni and cheese, but I could not boil it, nevermind that we have no mac n cheese in the house at all. And so on and so forth.

The day continued like that – tears and screams and incoherent grunting because I called something by the wrong name, because we mistakenly said we’d be riding in one vehicle and took another, and and and.

So the kids went to Grandma and Poppa’s for supper, and we went out for a meal that didn’t involve Holland screeching because she wants to use a fork but has no idea how, and Noel lying in the middle of the table because.. well because it’s what he does.

I’m tired. I’m frustrated. And I’m sad. Because some days I can see hope in the distance, and some days, today, I cannot. Trying to move forward with the FSCD applications, wondering how the school funding works, and all the while feeling like we’re treading desperately just to stay afloat. All in all, today was a crap day. With luck, tomorrow will be better.

To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other’s hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time. – Clara Ortega

Holland is the baby sister in our household. She adores her brother. She will follow him anywhere. His laughter makes her laugh, that sweet baby laugh that’s like hiccups and squeals rolled into one. Though she’s often on the receiving end of careless shoves, snatched away toys and other injustices of childhood, she endures, and adores, unfailingly.

My pregnancy with Holland was less than simple. In my first trimester, we found out I was lacking a protein that, when absent, is associated with Down Syndrome. I ended up having further testing, in the form of a CVS to rule out the possibility. In the agonizing two weeks that we spent waiting for the results, while in lab somewhere, Holland’s chromosomes were carefully accounted for, we found ourselves wondering what we might do. Would we terminate? Would we go forward, hoping for a high functioning child? What quality of life would our child have? What would it mean, what would it look like for our family?

And you know, we never really came to a decision, but I know that Noel weighed heavily in those discussions. What did it mean for him? Our choice to have a second baby was not one we came by easily. Noel is, and always has been, a high needs child. He requires attention – when he doesn’t get it, he demands it, usually noisily. As many people have said to us ‘If our second had been our first, we never would have had a second’, we were the opposite. Our first was that ‘difficult’ child, and our second, we hoped, was going to be different. Easygoing, laidback, sleeping through the night from day 1. (Ha!)

Holland is pretty laidback. She’s an observer, though when she wants attention, she, like her brother, can insist on it with all her vocal power. She is cautious around outsiders, and she really loves to snuggle. Her hair is blonde, and a wild mess, really more of a baby mullet than anything else. And when I watch them, I try to figure out what it will be like for them as siblings, growing older. Kyle imagines she will protect him from bulllies, and I think he’s right. She’ll be his one built in friend, where making friends might be a struggle for Noel.

I find myself wondering if we would have had a second child, if our diagnosis had come earlier (though from what I understand of Asperger’s, that’s pretty unheard of. The onset of symptoms is later than in Autism, closer to three years of age.) We had carefully considered the implications for Noel if he was to have a sibling with Down Syndrome, and similarly, I think we would have needed to consider the implications for Holland to have a sibling with Asperger’s. At the end of the day, when our nerves are raw from dealing with both children all day, from dragging Noel back from darting out into traffic, from asking him not to push her, from asking her to leave him alone with his toys, I feel bad for her, because we snap more easily.

This post feels like a confession – Noel is hard, hard work. He is far more difficult than she is. When I am home with just her on his school days, life is much simpler. And because I lack a frame of reference, I don’t know if that’s normal for all parents of two, or how extreme the difference is.

I do know that now I have two beautiful children, who I wouldn’t trade for the world. And I guess that’s what it all comes down to.