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.

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.

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, at long last, we received our offical report, with the conclusion and diagnosis.

Somehow, seeing it on paper has made me at once melancholy and relieved. It means so much, so many things, and so little, all at once. It has spurred me into action, now there are appointments to make and paperwork to fill out and skills to learn, and in turn, teach them to Noel.

I had been harbouring not so secret hope that the report would come back – Oops! Our bad! He’s totally normal. He’ll grow out of it. Four years old will be better. It was a ridiculous thing to hope for, but one that some tiny part of me was clinging to desperately.

For anyone who hasn’t received a pyschoeducational assessment of their child, it basically is one big package of suck. There is little included about the amazing things about your baby, but instead the focus is on the deficits your child displays that will make them eligible for funding. It hurts to read, and it sort of makes the little mom voice inside roar ‘But he has so many GREAT things about him! He’s awesome! Really!’.

Waiting for the report was like standing at the bus stop, for a route you’ve never taken before. Now we’ve climbed on the bus and have to see where it takes us. Deep breath. Here we go.

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.

I think the hardest part of adjusting to the diagnosis is in the every day things. The way the possibilities suddenly bubble up to the surface, things I hadn’t yet considered.

For example, at the support meeting we attended, the Registered Disability Savings Plan was mentioned.

It had never ocurred to me, of course, that maybe Noel would need care after we are gone. That maybe the RESP he’s had since birth will not be used. I catch myself, and remind myself that thinking ahead to Noel’s retirement years is maybe a little excessive. But again, it’s the things I haven’t thought about yet that catch me with a sharp jab in the side.

And the permanence. Noel will not grow out of Asperger’s. He will not one day be cured. He will always be an ‘Aspie’. The severity, his coping skills, how affected he is from day to day, that might change. But it’s forever.

And part of me is resentful. Resentful of the families for whom this is never a consideration. How unfair it is, to win this lottery. Part of me knows that Noel is a brilliant light in my life that I would never ever trade. But part of me is stomping her feet and throwing a tantrum. I don’t want to learn new ways to parent! I don’t want to learn how to help him cope with his emotional meltdowns! I don’t want to worry about him every time I turn my attention elsewhere! I want normalcy.

But then again, what is that? Surely all parents have some degree of struggle that they would rather do without. The grass is always greener, and it’s not about who’s got it worse.

Noel’s second day at school was a smashing success. When I dropped him off in the morning, he ran eagerly down the hallway, into the classroom, and hugged his teachers, who gushed about how affectionate he is. When we picked him up, we were a few moments late, and he was standing staring at the door with tears starting to well in his eyes. When I asked him what was wrong, he told me we were a little late, and he thought we might not be coming. He hugged my leg and patted Holland’s bare foot.

The way he makes my heart swell cannot truly be put into words.

I’m sure every mother has them, while she is swollen big with a baby, a round bump of hope and longing and mystery that occassionally delivers sharp kicks into her ribs. Expectations. Pregnancy is, after all, ‘expecting’.

A baby. A lifetime. A certain soft baby smell, that downy soft hair, the snuggles. A picture perfect family on a walk on a fall evening, a bouncing baby in the stroller, holding hands. So many years stretched out ahead of them with only the best and brightest and greatest of possibilites.

I had them. When I was pregnant with my son, we carefully considered the weight of his name. How important it would be for him to have a strong name, a name that evoked intelligence and gentleness and a great sense of humour.

So in my mind, there he was. A warm, snuggly ball of joy, who would talk early and achieve ahead of his time, and only impress us. And there I was – an Earth mother, in the grass, barefoot, babe to breast, making cookies with only the best organic ingredients. Mashing up fresh baby food, sleeping with his small self pressed to my side, holding him at all times and answering every whim. For me, motherhood was this glowing, golden time. It was going to be perfection.

The reality was different. On January 19th, 2006, after a long labour and an emergency c-section, Noel entered the world screaming at 7:26 p.m. He was perfect and beautiful – his head round due to never engaging in my pelvis at all, his skin olive and his hair thick and dark. I didn’t get to hold him for some time after the birth, several hours, while I trembled violently, while the nurse pressed ice cubes to my skin, slowly descending to follow the feeling as it returned from wherever it goes when one has an epidural.

When I did finally get him, he was such a foreign creature. I could not connect this Noel with the baby I had carried and planned for. He was such a strong force, he defied all my previous expectations, even in his first hours of life, with his eyes squeezed tight against the invading light and his mouth searching for milk. He stubbornly insisted that any plans I’d had, I should discard.

And so it was that we brought him home, and he turned everything on it’s ear. Of course, all babies do, and I shouldn’t think we were anything special. But I had so wholly bought into a different picture of what it would be like that when the reality set in I was left stunned. The January nights were interminably long. Nursing was isolating. And he cried. He cried for hours. All the time. A wrenching scream that would cause my breasts to tingle and my heart to fall.

Yes, he was some of the other things I had considered – he smelled amazing, his hair soft as silk. He was the perfect weight on my chest, where he usually slept. He is whipsmart and stunningly gorgeous. He experiences joy with a passion that we should all be so lucky to feel.

However, over the last three and a half years, we also noticed that something was different about him. That whatever the beat was in his head, it was different from what everyone else was hearing. Noel is extraordinary, in the true sense of the word. He is stubborn and loud and he throws himself, literally, at everything.

As we have moved through different channels, trying to help Noel better function in his world, we finally met with the right psychologist, who had a word for Noel: Asperger’s.

So yes, my expectations were one thing. The reality is very much another. The true meaning of this diagnosis is still sinking in, settling into my bones and so I type the letters into Google and then sit staring at the screen. Skim the paragraphs and just can’t process. I am utterly overwhelmed. Thoughts race – will he make friends? Marry? Will he always have the epic emotional meltdowns that can bring our entire household to its knees? Will he succeed in school? Will he meet the plans I made for him in my head?

As of this moment, I still am unsure. I am not even certain of hope. So this blog.. will be us, moving through this, feeling our way around in the dark. I know that eventually we’ll come out on the other side, stronger, better, enabled. But for now, I feel absolutely blind.

(As a side note, today is our daughter’s birthday. Happy 1st birthday Holland!)