The neutrality of peace and the certainty of chaos

If anyone is still out there, you’ve noticed I no longer write here. It’s not that life is not still wonderful and confusing, but that I’ve accepted the wonder and confusion for what it is, and it’s softened my desire to publicly ponder. Quiet reverie.

I feel more comfortable now, in this unique-ish mothering role – a little less bewildered and clueless, and a little more in-the-know and fortified. And with that, ready to move on to more bewildering things that I am clueless about.

I’ve started a new business that has been slow (so slow) to ramp up, with little (so little) time. It is named after A and called Arch Inclusive. The services I offer are the services I currently know how to do, and it’s nothing too exciting really, but still exciting. I have been working in this field (digital accessibility!) for 12 years now but have dreams to get more real about it all. You know, make a difference.

I won’t share any specifics that illustrate the enormity of my vision, but generally, I hope to grow a business that not only supports, but demonstrates, the significance of an inclusive community.

A brief update on our guy’s epilepsy, while I’m here: success with cannabis, then rocking the boat with weaning the keto diet. We’re currently back to square one seizure-wise, but with previous successes in July (5 seizure free days in a row!), we are optimistic about finding our footing once again. Slowly, surely, as with everything.

Row, row, row your boat

All is sunny in 2015. Steady she goes (sorta), stay the course (mostly), onwards and upwards (definitely).

A’s doing well – bright-eyed and bouncing. Still multiple daily seizures – some weeks are worse than others, but generally it’s been alright. It still really sucks, but it’s alright.

Myself – I’ve been tense, but in a good way, like the way you feel right before jumping into a lake. A starts junior kindergarten soon and with that a whole shift in our little universe. Though really, “soon” is looking more like a year from now, so that is not actually soon. But arranging supports and support staff for Mr. A takes time, months, so we start the ball rolling now.

Lots of thoughts lately. Mostly judging the line between pushing harder, expecting more and letting be, enjoying what there is. Both are important. Both are necessary.

Lately, I spend a lot of time thinking about how to achieve more time. Lately, I spend a lot of time not in the moment, which reminds me to someday practice being in the moment. Lately, I feel so fulfilled at how interesting and never-endingly-endless my days have become.

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.

Mama needed

Day in the sun and grass, garden, baby not wanting to sleep, A squealing happily, also not sleeping, no writing time tonight, babiessssss todddddlersssss. Clutching my chamomile, I bid ya’ll “till next time”.

Therapies in tandem

Parenting during the internet age is a WONDERFUL thing, especially with a unique kiddo that requires and inspires a lot of research. There is SO MUCH information available about everything and anything and nothing seems exhaustive, particularly in the realm of therapies for special needs kids.

Therapies, programs, protocols, diets, equipment, tips, bla bla bla bla bla. It is an endless, swirling vat of other people’s experiences, popular-at-the-moment trends, latest research, misconceptions, youtube home movies, banal blogs, wonderful academics, and so on. This onslaught of mishmash has had the transferable effect of influencing my take on therapies: nobody knows anything, really, so try lots of different things.

Thus, A gets a lot of stuff. Some of it clicks, some of it doesn’t, some of it seems good in theory but silly in practice, some of it makes total sense, some of it’s totally ridiculous, etc. All of it… interesting.

PECS, gluten-free, kidwalk, PT, OT, SLP, egg-free, therapeutic horseback riding, ABM, AAC, massage, cranial sacral, omega 3, seizure meds, cuddle swing, RPM, bla bla bla bla bla.

Not to mention stuff like painting his pointer finger nail red as a visual cue for pointing (my own genius idea), or rubbing the base of his head with frankincense salve to awaken the brain (essential oil therapy), or listening to sounds at a particular frequency to give new auditory input (music therapy). Gotta suggestion? We might try it. I have a backlog of stuff still to try, seek out, read more on.

Often sources of these helpful bits seem to think they alone are correct, and using them in tandem with another thing is thought to confuse and lessen their particular affects. For example, ABM practitioners would hope that you do nothing the kid isn’t naturally ready for and therefore assistive devices like walkers are a no no. A loves his walker and I would never take that away from him. In theory, so much good stuff. In practice, so much good stuff, but different.

Overwhelming? Not enough? Hocus pocus bibbity bop?

Fuzzy brain day, so I’ll return to this topic another time.

Time out

So after yesterday’s soapbox post about inclusion, the practice of writing, the importance of showing up, etc. I’m taking a pass on tonight. A movie with hubs and earlier I was looking at google images of horses with A. He starts riding lessons on the 5th but we’re going to visit the farm on Sunday morning to meet the horses. I think this will be his first time seeing a real horse up close – should be somethin’!

Brain connexions

On the days I need it, I read “success” stories about special needs kids. There are a handful of fantastical anecdotes of children who all of a sudden just got up and walked across the room for first steps, or nonchalantly spoke a clear and insightful sentence for first words, or answered a slew of advanced quiz questions correctly for first demonstrations of logic.

In the past these tales would be as real-sounding to me as the Lochness monster or Bigfoot. Evasive, mythical triumphs that appear unexpectedly to random folk, lingering amid the rest of reality. A divine lightning strike of adeptness. Boom! Mobility, speech, profound intellect! Magical mastery.

Anat Baniel discusses the possibility of speed in progress: that there’s a lot of background work happening out of view, building up to a point. She attests that when the right neurological connections are finally made, a skill can break through and… well, boom!

I’ve also read about these connections being brought on or triggered by a specific environmental input – a certain piece of music, surrounding, person, activity, etc. Like the charms that can happen when stroke patients listen to music.

But still. These indescribable happenings, these wonders of the brain… even if it’s possible, it feels like something that happens to OTHER people, not us. Not my kids or any kids I know. But like someone from your hometown, population 600, winning millions in the lottery, the probably-would-never-happen can evolve into maybe-it-could-happen and even certainly-it-does-happen.

Open to the possibility and light shines in.

Turns out the proof is in my little E when it comes to brain speed and new connections. This week (this WEEK!) he has taught himself how to sit, crawl on all fours, and pull up. He is 6 months old. The sitting thing happened in a night, and once he “got it” he was instantly proficient. How amazing is that? He’s amazing. I look at him in awe every time I look at him.

And regarding indescribable things… well A has babbled more today than I’ve heard him babble in months.

Someday

I think and write about “someday” a lot because I have faith in someday. Someday is always on the horizon but arrives eventually. It’s tomorrow or years from now, inherently inconspicuous in the realm of time, but weighty enough to make its presence felt. It’s in the background one day, and centre stage the next. It’s on the tip of your tongue, at the edge of a treeline, in the peripheral of sight. You can feel someday coming like a rush and anticipate wildly for it to arrive. Someday could be a head on collision or winning the lottery. And if someday happens, there are more somedays ahead. It may fall like the crest of a wave, ripple and level out, then linger until the next someday surges.

Someday A will be walking, maybe even talking, but definitely communicating. Someday he’ll know how to ride a bike, catch a fish, score on net. Someday he’ll hop, skip, jump. Someday he’ll read inspiring texts, create beautiful art, travel to interesting places. Someday so many things, everything, anything.

On tough days I have a hard time believing, but most of the time I truly do. These early years… are so difficult. I have to keep reminding myself he’s only 2. He’s only 2 for crying out loud! So much ahead, so so so much.

Christmas comes early

A has just re-started therapies – physio, occupational, and speech. We moved this summer and have been on a wait list to receive these services locally (well, still a 45min drive away, but such is life when one lives rurally). We had our first visit last week, and our second tomorrow. It’s awesome to finally get help/direction again, and this crew of therapists seems to be a sharp bunch.

Anyway, A is going to borrow a walker for awhile! It’s called a Kidwalk and I am beyond stoked for him to get movin’ in that way again (he used an infant walker at his grandparents when we visited and he loved that thing). I did some googling and it’s quite a piece of equipment. He tries it out on the 17th. I have a feeling this will be my, and hopefully his, best Christmas present ever.

We’ve also just received word that our request for respite funding has been approved! That means we can hire someone to help out, in whatever capacity we need. Am researching possibilities today.