Robot Tea

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 2010…

I will listen more, and yell less
I will look for all the positive in my children, instead of drowning in the negative
I will be more present
I will read and learn as much as I can handle about Asperger’s
I will never back down

This evening, I am trying to come to terms with my desire for perfection at Christmastime.

Every year, I design the Christmas cards from scratch. Have them printed. Hand address the envelopes, write a Christmas letter with the hope that it will be at least entertaining for the amount of time it takes to read it. This year, I even took the photos for our card.

I bake, I shop furiously. We host a wine and cheese party, and often we also plan and execute a party for the softball team. This year, I also made vanilla extract, designed labels, tied on ribbon. I sewed gifts, and made pendants for special women in our lives. I made photo calendars.

And I’m freaking out. We’re headed to the cabin for Christmas, so I effectively hacked a good 5 days off my prep time. Another 2 days was shaved off at the beginning of the week when Holland started vomiting at random, inexplicable times. (Turns out she had an ear infection).

I haven’t wrapped a single present. Half of my cards are written and in envelopes, awaiting sealing and stamps, while the other half languishes at the printing place, where they were missed when Kyle picked up the rest of my printed goods today. I still have mountains of laundry to do. I haven’t made a packing list, or even brought the suitcases up from the basement.

Oh, and we leave tomorrow morning.

And so I’m trying to figure out how I can learn to just let things go. Be zen, realize that Christmas is not about these things, and just enjoy myself. I understand the spirit of the season, and I guess for me, a big part of that spirit is in reaching out to friends and family with our cards, about carefully selecting, making, wrapping gifts for our family. But the pressure can grow to be unbearable.

Ultimately, I know that I could wrap a bag of M & M’s and Noel and Holland would be content. In fact, I could give Holland absolutely nothing and she’d be none the wiser. But I would know, and it’s too much for me to ignore. But I worry about what they will remember of their mom when they are older – I hope that it’s of a mother who tried hard to make the season magical for them, not of a mother who was annoyed and frustrated for the entire month of December, save for Christmas day.

Do you ever feel sometimes like you’re just doing all the work it takes to get through each day? Like, you are not actually doing anything, yet you are so busy. Wake up, feed children, dress children, etc, until it’s time for bed and then up in the morning to start all over again?

That is how I feel lately.

There is nothing to update you on, not really. There is only the routine, the every day. Noel continues to struggle with epic meltdowns that include but are not limited to punching, kicking, throwing toys and slamming doors. Holland continues to nurse as much as every two hours over night, even though Thursday will make her 16 months old. I have Christmas shopping to do and business tasks to complete and mountains of laundry to wash, and that’s really not the most exciting reading.

The single thing that stands out for me over the last week is that we had our annual wine and cheese party with friends, and it was a much needed gulp of air, a break from the monotony. There really is nothing like an evening of adult conversation and lots and lots of saturated fat.

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.

These last seven days? They’ve been alternately horrible and wonderful. Excellent and torture.

My mom arrived last Friday, late, for a visit. Within 24 hours things had exploded, between her and eye, with me calling my brother for emergency interventions, planning to have him put her in his car and drive away with her.

I don’t think I’ve made my mother proud. I think that I married too early, had a child too son, had another child sooner than that, even. That I didn’t make the choices she wanted me to make. Didn’t go to university. Graduated from high school in my early 20s, instead of at 17 like everyone else.

And following that thread, the one where I grew up and disappointed her, I had a son, and he has Asperger’s and I can’t find the ways to parent him in the right way. I am doing everything wrong. And my mother could not resist telling me that. Telling me that she felt we were messing it all up. Irreparably damaging our kids. Forcing Noel to poor behaviour.

“He doesn’t have Asperger’s. He just has two messed up parents.”

Sadly, Noel does have Asperger’s, and he just lucked out so much to get two messed up parents to go with it.

Anyways. So there are wounds there that will take time to heal. A lot of time. My mother didn’t leave with my brother on Saturday night, though. She stayed. And we struggled.

On Monday, we finally had our visit with our caseworker from FSCD, who assigned us funding for Triple P, as she feels Noel is maybe a bit young yet for more formal interventions, and 80 hours of respite care for the year.

I don’t know that I can adequately describe how good it feels, to make forward progress.

That night, I went to bed with a bit of a cough, and in the morning, the H1N1 Mac truck had hit me with full force. In the afternoon, Kyle took me to the assessment clinic (opened to keep us germy contagious people out of the ER), where my heart was racing at 139 beats per minute, my body dehydrated by fever. An IV lowered the heart rate, and a tonne of Gatorade and Tamiflu has been taking care of the rest.

My mom extended her stay by two days to take care of us while I was down for the count. Irony, no? On Saturday, she couldn’t wait to leave, was headed for the nearest hotel. On Wednesday, she was cancelling her flight and making sure I drank enough fluids.

See, I understand, that she loves me. I get that. I am a mother. I understand completely how seeing your child sick is alarming, especially with an illness that the media has touted as a merciless killer. And I want as much as she does, for me to be that ideal vision of parenting perfection. But more than that, I want her to accept this, and hold me. Hug me, tell me it IS hard (like so many of you do, here, which is wonderful), and that she will be here for us in whatever way she can. Tell me that it will be okay. That he will be okay. That we will be. Because often, I am not so sure.

Finally, we have shaken off the inertia and will begin some forward motion.

We have been assigned an FSCD caseworker. We have scheduled a meeting! Wheee!

The SLP at Noel’s school apparently observed him last week, but we’ve been playing phone tag so far.

I’ve signed us up to take part in a research study with the Sinneave Foundation that focuses on what it’s like parenting a child with ASD. The last few weeks my answer to that question would have been “hell” but surprisingly, even with Kyle out of town since Tuesday, my mind has changed, and now I can see a bit of the sun again, peeking out from behind my stormclouds.

Noel was a skeleton for Halloween. He loves for us to name the bones he has – skull, shin, ankle, spine. For the first time ever, I made his costume and I think it turned out rather nicely. Holland was a storebought Garden Gnome. I would share photos but I have a new computer and I can’t upload photos as the drive has not been mapped for me.

***

It’s funny what a difference 24 hours makes. Because where yesterday, before Holland awoke from her nap and interrupted me mid thought, I was feeling optimistic, today I am back, right back, into the claws of grief.

Current stage? Anger. Didn’t I go through this one already? Who knows.

Anyways. My mom arrives this evening to stay with us for a little one, and I am determined to help her have a good visit. Determined.

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.