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.

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.