A busy life

Life. It’s a beautiful, trying, evasive, immediate thing.

We’re heading into an adjustment for all as I return to work from my mat leave next week. E has started attending a nearby home daycare and is totally settling right in. A relief. And A will be going up to 4d/wk at his daycare and also moving into a preschool room. The leaves are changing colour.

The wood is piled, the nights are cooling, the wind smells like apples. Every meal somehow incorporates tomatoes and/or zucchini.

Every hour seems dedicated to streamlining. How to smooth down each task, like rocks in a river, so that they eat up as little valuable time as possible, run smoothly and efficiently, feel satisfying instead of draining. In itself, an endless fight against entropy, lack of sleep, the propensity of small children to create endless messes.

To fit in things like visits with friends, strolls along the river, baking seems not yet attainable, but someday, once we all settle into the new normal.

A broke his Kidwalk walker with all his wild jumping – a large, substantial spring literally broken in half! We’re waiting for a replacement to be sent from the States. We’re all really missing his independent, upright time. He’s tirelessly throwing his head back – from kneeling, sitting, standing, being carried, etc. It’s quite exhausting to police and cringe-worthy to watch. Might try a sensory suit and some exercises that encourage flexion vs. extension. A and all his different facets of struggle. Struggle or substance? He’s beautiful always.

We hired a private speech therapist for extra communication help. It was SO HELPFUL to get her input. Working on implementing her recommendations. More on that later.

Still daily seizures for A, but less lately. We decreased the clonazepam and think that might have helped. Maybe it’s giving the ketogenic diet more of a chance, or maybe it’s just not helping period. EEG and neuro appt in a couple of weeks.

Currently half way through my first four hours of child-less time in… almost a year? It feels comfortable, quiet. But I miss my kids. But it’s time. Time for us all to do things apart, receive the richness of life that comes from leaving one’s house, and then come back to each other and share all that we’ve learned.

Substance of stillness

There are moments like this:

child’s pose in the grass, where it seems like A might be falling asleep. Like sometimes he’ll be quietly cozy on the couch. Or bundled snuggley into the cuddle swing, swaying. I peek at him, expecting heavy eyelids, finger-soothing, maybe even a subtle snore. But no, he is awake. His eyes are bright and he is paying attention. What to?

His brother E is such a busy body now that he’s mobile. Constant, constant doing. He skitters from one toy to the next, looking for something new to get into, curious in an obvious way. When he’s sitting, he’s babbling away, looking around, mouthing things. Then A, A has so many moments of deep ocean-like stillness. Just listening, watching, breathing, feeling, smelling… aware. He is on pause but with a mind clearly playing. Unmoving but responsive.

I could call this blog “I wonder what A’s thinking” because I always do and I write about it a lot. I know though, that my own personal ruminations about what it could be, what inspires it, what fascinates and captures, will not get me any closer to solving his silences or his serenity. It’s a worthy activity in that maybe I can find the odd foothold in this mountain of unknowns and discovery. But even still, my own neurology limits my ability to fathom all that it could be, in these moments.

Perhaps he’s wondering, “why is there a cloth diaper hanging on the lamp?”

Dizzy

Just a quick note to say I’m reading more about A’s main sensory issues: vestibular (balance) and proprioception (where you are in space). I like this quirky read about vestibular sense. The idea that movement is research, and more tactile input is necessary for orientation. This comparison is interesting:

Have you ever been in a car and thought your car was moving forward when in fact the car next to you was backing up?

Wild to imagine that A might feel this confused about his place in space a lot of the time. Actually dizzying to just think about it.

Experiment mentality

Lately I’ve been pursuing forum threads that suggest alternative therapies. Little minds are so beautifully complex, no one really knows what sort of stimuli will entice positive change, especially when you’re talking about literally unique individuals. So in the spirit of trying all kinds of things…

To read more about: hippotherapy, sensory enrichment therapy, a neurodevelopmental program, MNRI (Neuro-Sensory-Motor Reflex Integration), Floortime, aquatherapy, and so on. The only thing is that living in such a rural area, specialists for these specific therapies are few and far, so absorbing as much as I can on my own, things that we can practice at home. Some of these programs offer online courses you can follow along with, so that might be the way to go too.

We will also be trying out massage, craniosacral therapy, and naturopathy on top of the usual PT/OT/SLP. Our household went gluten-free this week… waiting for advice of naturopath before eliminating other things, like dairy. I’m quite interested in what a food-sensitivity test might reveal for A – he has more seizures when he’s stressed/tired so diet is an obvious place to look for clues.

Careful to not get too overwhelmed and jumbled up – both A and me, we’ll start with what’s comfortable, maintainable, covered-by-insurance, and mainly… what feels right and good. Natural progression, baby steps, organic.

I’m particularly drawn to the sensory enrichment idea. A often seems under-stimulated, bored, dull, tired, uninterested. We already know he is hypo-sensitive, so it makes sense that he should be given more. More beautiful and interesting scents, textures, music, images… I’m excited by this because these are things I seek in my own life -, these are things humans are meant to experience. Fresh flowers, long baths, classical music, comfy pillows, art, etc. It’s a project I can really get behind! To “wake up” my child with the pleasures of nature and culture and just being.

Time dilation

There are some differences between us that we can’t really talk about. The subtleties are immeasurable without being each other for a moment, to compare. How does gravity feel on you? How fast or slow does time move? What subconscious comforts do you provide yourself? How attentive are you to your peripherals? etc.

The laws of physics affect people differently… they are the same but we are not. A’s differences give me perspective, and I sometimes fall into relative self-introspection as a result. Maybe living is a bit heavier for A if he is more aware of the literal weight of the world. Maybe his moments are stretched out longer than mine are (actually, they are since time is relative and I am in 34 and he is 2). He seeks comfort in sensory input, do I too? I know I am sensitive to my environment… sounds and lights. And what I see out the corners of my eyes affects me even though I’m not looking that way.

Time dilation explains why two working clocks will report different times after different accelerations.

“A time” is referred to often in this house. “He’s moving in A time”, “his own pace”, “his own schedule” etc. and I sort of like thinking about how the theory of relativity affects my son. He and I likely observe time and space in different ways and that fascinates me.

I wonder if something is happening when I speed up – does it make him seem slower than he actually is? I try to relax my moments when we are together. Kid’s kind of inherently brake you, giving a chance to experience the senses better. I get down on the floor with him and try to feel the feel of the carpet, the sharpness of the edge of a block, the smooth button on a toy, the softness of a blanket. I listen to the hum of the fridge, a passing car, the murmur of a newborn sleeping nearby. I look at the contrast of colours in a book, the blur of greys in a shadow, the texture of a basket.

Maybe his unique set of neurological connections bend his continuum and events meld together in different ways. Maybe the enjoyment spent walking yesterday didn’t happen today. Maybe the “k” sound he made last year is still waiting to be learned. What will happen today may change his experiences of the past, inspiring me to try to take more time with things.

Apples and oranges and sparks

I can’t remember when I stopped comparing, but it’s a strange non-activity my brain acknowledges, then quickly gives up on.

We watched a movie the other night that had a probably-not-even-one-year-old in it, walking around, standing on his own, interacting. My husband said, “that looks so weird to me” and I concurred. The relaxed ease with which this very young little being was moving about just looked… surreal.

I would describe my son as “kinetic” – he has a belly of energy that is constantly flowing through and out of him, fuelled by a desire for feeling and movement. Therapists would call him a “sensory seeker“. He rocks in his highchair, he arches his back over and over while on the floor, he jump jump jump jumps on his feet, he sways on his hands and knees… he is always moving. Except for when he’s not. Then he is as still as a tree, caught or immersed in a moment of… I could only guess. Shadows and light? Emptiness? Reliving something that happened? Patterns? The feeling of everything?

During these kind of spaced out moments hubs and I sometimes joke, “A, are you doing your math equations?” For it’s enjoyable to wonder about all that could be going on and less pleasant to think about how little might be.

I consider myself pretty in-tune to most things and people, and of course my son trumps most things and most people, so I feel pretty in-tune to him. However, he is unlike anyone I’ve ever known. I feel his intelligence is vast, but I know, in addition to being his mother, that I am an idealist. I let myself consider he may seriously lack comprehension for things, but it jars, doesn’t seem quite right. The sly smile he gives me when I ask him to do something (that in turn he does not do), or his attention to detail in the choosing of toys (he prefers holding two things that match), or the way he sits and thinks on something so intensely (for… ages). Who knows though.

Hubs got me the book “The Spark” for Christmas. I’d been eyeing it for awhile but the e-book has been loaned out for months from our library. I started it today. It’s a memoir of a mother who’s son has autism and, turns out, is a genius, a math/science prodigy. I’ll be honest and admit that I was hoping the first chapter describing her genius-toddler would align with some of the things I’m seeing in A, but not so. Yes, her kid dug shadows and plaid as well, but he also recited Japanese cartoons and learned the alphabet at 14 months or whatever. So much for comparison there too, but I’ll read on!

Suppose all of those spaced out times really are… spaces. Can I/someone/something fill them? Will they hold anything profound? Or are they abysses of beautiful peacefulness better left undisturbed?

If my son does not win the lottery of genius-ness, I will not be surprised – winning the lottery is tough. But I think I will always wonder what he’s wondering and someday when he tells me, I will be endlessly amazed.