Robot Tea

I know I keep disappearing for long stretches, radio silence.

Life has been getting harder for Noel to cope with. Despite being assured that the hard part was over, that from now on, we would coast downhill, well, it seems like if this is downhill, we are not coasting but screaming hysterically and clinging to the side of the coaster car for dear life.

His anxiety seems to worsen every day. And his aggression. Yesterday, he hit Kyle in the head with a heavy toy wooden frying pan over putting on his pyjama pants (he didn’t want them.) He cries, he clings to us, then quickly shoves us away. We are worn down, and worn out. We are unsure, and I catch myself cringing when he comes close, unsure if a blow will soon follow.

Our respite worker, who we really liked? She is moving out of town for a job. Our Positive Parenting Program worker, who we struggled with over multiple cancelled appointments (on her part)? She’s now on a leave of absence.

It seems like we reach out for help, a hand comes in and grabs ours and just when we feel like things might be okay, they let go.

I understand that maybe I need to quit searching for this magical, outside intervention that will help us. But the things we’ve tried are not working. They just aren’t. We continue to see our beautiful boy fall to pieces under the weight of his anxiety, his emotional instability, his anger, and his confusion.

Some days, I wonder if he would be better off with someone else. ‘Someone else’ is abstract, not a real, solid person but I feel like maybe they could find the key to unlock his happiness, and that then he would be okay. A parent with more patience, more grace, more understanding. A parent who didn’t feel so completely overwhelmed by all of this, who could just take charge and be an advocate and push in all the right places to get the help her child needs. I thought I was that mom, but as it turns out, I’m not. I would rather go hide my head under my pillow and hope for ’someone else’ to help him.

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?

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.

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.

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.

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 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.