Robot Tea

I’m over at Hopeful Parents today – come join the conversation.

Tonight we take advantage, for the first time, of respite care, and head out for the evening to a fundraising silent auction with ball team friends.

My stomach is in knots. This is the first time, ever, that I will leave my children with a stranger. I mean, yes, I have met her, but she is not someone who we have known for ages.

My keyboard has switched itself to French, so please ignore any randomly inserted accents.

I have always been worried about leaving Noel with people who donèt love him. I am certain that our overwhelming love for him is what keeps us from going completely off the deep end and locking him in a closet. Without love, what stops a person (okay, I know, human decency and so forth stops them, but these are not logical feelings I am having, so they ignore logical answers). What stops them from raising a hand to him, or making him feel small.

His amazing amazing school and teachers have proved me wrong to some degree, on this front. They did not know him, or love him, back in August. But they sure do love him now. And we love them. This week we finally got his IPP in place, and I continue to be left with a warm fuzzy feeling for the place we chose, knowing it is truly the right place.

So tonight, on a date! Oh my. I even did my hair.

Also, if you have a moment, or an extra few dollars, please help us raise money for Noels service dog – www.4paws4noel.com

I’m over at Hopeful Parents today. Come on over.

This poor blog, is like a favourite new toy I got for Christmas, which I’ve now forgotten. And oh, how I feel guilty for it.

There is a constant pull, a tug, to document what is happening, to write about the lives of Noel and Holland and our lives as they revolve around them, but there is a stronger pull, one that maybe sort of feels if I don’t write it down then one day I will look back at these days differently, since I won’t have a written record of how it really was.

That’s a roundabout way of saying that things are difficult. They do not seem to improve. It feels like our feet our stuck, glued down, like we really want to step forward, but our legs are not strong enough. Likewise, we really want to help Noel, but maybe our hearts are not big enough. Because you can commit and commit to doing better every day, but when the stress bears down and the little cracks start to show, then it’s sort of all over, isn’t it?

Before I became pregnant with Holland, I went on a ‘lifestyle’ plan, that included better eating, a lot of exercise, and so on. One thing the nutritionist said to me is that a huge downfall for many people, is the feeling that the day is shot – Slipped up at lunch and indulged our McD’s craving? Well obviously you should give up for the day, give in to everything else and start again tomorrow.

Parenting is sort of like that – when we start the day poorly, I am quick to write off the entire day, and so I stop trying. This is my downfall. So I need to change that. But how?

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.

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.

I came across this article via Stumbleupon this evening, and found it to be a very interesting read.

“The New Wave of Autism Rights” highlight three major warring teams in the Autism world – those who believe autism is caused by vaccines, those who believe autism is genetics and those who believe that autism is ‘neurodiversity’ that should be embraced, not cured or eradicated.

I know where I don’t sit – I do not believe that Noel’s Asperger’s was caused by vaccines. While my position could change given new, solid information, it’s just not something I really consider. When it does pop into my head – ‘Is it because I vaccinated him?’ it is usually lumped with other thoughts I label “irrational” – ‘Is it because I had an epidural/emergency c-section/don’t feed him enough organic food/breastfed him for too long/not long enough?’ and so on and so on.

Genetics I’m not sure of – sure, I can see these symptoms in myself and in Kyle, but at what point do personality traits become disabling? Obviously, for us, they were mild enough or managed well enough that we got by just fine. Noel is not getting by just fine.

But the ideas about neurodiversity I find so interesting. Is it wrong to hope for a magic bullet that cures Noel and renders him “normal”? Does it deny who he is to want it for him? I don’t think so because I don’t wish to change Noel so much as I wish to lessen the struggles Noel will inevitably face.

Right now, Noel displays behaviours that place him at risk for injury, or even death. He will dart into the street or through a parking lot without a second thought. He is so oblivious to us at times that we wonder how long it would take him to notice he was separated from us in a public situation. We keep a secondary, high lock on our front door to prevent Noel from opening the door to a stranger, or worse, wandering out when we’re not paying attention.

Why keep those? Those behaviours are cute and quirky – they’re dangerous. They place him at risk. So of course, I want rid of those. Does that deny who he is? I don’t think so.

Noel is too young at this point to know what his strengths will be. But I think that how we react to him now, how we approach parenting him, the assistance we seek out, the therapies we use, will affect those strengths completely. If we just decide to embrace everything, the negative, the positive, the in between, will he find his way through? Or will he just be a 15 year old who is not toilet trained, who talks to himself, wanders away, and flings himself, physically at walls, furniture and other people?

So I think for now, while the idea of neurodiversity is pretty, it’s not real. Not to us, yet, anyways. Yes, this diagnosis is a positive thing, because we can help Noel to adjust to a world that must seem hostile to him, But we still wouldn’t have chosen it for him. Not in a million years.