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.

Keep calm and carry on

Both boys snoozing so I allowed myself a long, hot, quiet bath. A rarity, a small pleasure, some time spent infusing the day with good-things-to-come.

Sometimes I am surprised when I meet people, adults, who haven’t learned one of the pillars of surviving this life: thinking negatively makes your life shitty, so teach yourself to think positively. In particular, just be open to the idea that all will be well – that is all. Sounds simple, but I know it’s hard. We have evolved to be defensive: a zillion years ago we needed to be ready when that wildcat emerged from the bushes, but now it doesn’t serve us the same way. Prehistoric threats are gone, so we search for ways to satiate our brain’s desire to protect. We imagine darkness where there is light, and emptiness where there is fullness. It’s a bad habit worth correcting.

When the dark threatens to swallow your own child, it’s essential to bring light, and to shine shine shine warmly all over him. A’s emotional self-awareness has been noticeably growing over the past few months, and with that, a new found sense of… panic. More about that later, but in order to calm the breath-holding, hair-pulling, and fear-in-his-eyes, I assure him of what I’ve learned myself: all will be well, just hang in there. I smile a bright beam of sun and melt away his fear.

Epilepsy Update
For a reason unbeknownst to us, A’s seizures have let up. Since his epilepsy began in July, when he was nearly 19 months old, he’s had seizures daily. Looking at my seizure tracker app, this week has been mostly seizure-free days! What is going on?! The few main factors we can think of are the walker (neurological development = change in seizures?), omega-3 supplement (daily for the past 5 days), and Keppra weaning (he’s been off of it since Dec 10 – finally out of his system?). I’m nervous to jinx it but… !!!

For extra fun, just add newborn

It’s nice to be off work and get to hang out a lot with A, especially with all the business of arranging services and attending therapies, etc. The only catch is that I’ve got a newborn to look after as well. Maternity leave ya’ll!

We got pregnant before figuring out the genetics stuff with A. It was a little awful having doctors tip-toe around asking me if I wanted to end the pregnancy should it turn out that A’s issues were inherited and thus likely to affect #2 as well… but we assured them another A would be fine by us. Nonetheless, there was that worry. Fortunately, this was not the case and E is just fine. To assure us of this, he’s strong and breastfeeding well and hitting the early milestones easily. I’ll write about A’s first month another time, but it was difficult. Life with newborn E is easy.

It’s beautiful and strange to have a kid that I don’t have to worry about. I predict he is the missing piece of our little family puzzle – healing his mama, teaching his brother. That’s a lot to put on a 6 week old, but I think it will come naturally. I see it happening already. He is chubby and smiley and he and A seem comforted by each other’s company. They’ll be quite a team.

Funny to think they could both be walking this year. It’s going to be a fun 2014.

Physio/med update

Part of the reason for this blog is also to keep tabs on changes/progress for ourselves, so we can look back and say “oh yeah, that was happening then!” As a result, I’ll be including some kinda boring factual updates vs. musings. Here’s one:

We’ll revise our focus for the coming month to… WALKIN’! On Tuesday we borrowed a very cool walker called the “Kidwalk” and so will be practicing with it while we have it. A has backwards down pat, so we’re working on taking steps to move forward. He does a cute fluttery-feet thing now but think he’ll get the hang of it soon. The advantage of this walker, compared to others, is that there isn’t anything in front of him so he can walk right up to a table, etc. and be able to reach stuff easily. It also has a bit of bounce (A loves to jump) and is quite sensitive so moves/turns easily. Pics to come. Oh, and for added coolness, the back wheels light up with pretty colours!

Re: our neurology appointment, which was also on Tuesday, A’s med situation will stay the same as his weight hasn’t changed and he’s at the max dose of clonazepam for his size. Adding valproic acid was recommended, to treat the new drop seizures, but we decided to wait on that as the drops don’t harm him and aren’t happening that often. Adding another medication has its own set of cons so it’s always weighing one against the other – treatment vs. symptom. It’s hard to read a list of possible side effects and come out the other end saying “sure I’ll give that to my kid.” We’ll at least wait to see if things settle into any kind of pattern as right now the seizures are relatively new and inconsistent.

A also had an eye test, just for the heck of it, and all is well there. The Dr. was over 2hrs behind schedule so our day in the big city ended up being…. looong and waiting-roomy. Twelve hours later, we were home.

Hold the door?

I’ve got one pair of legs for three people – my two non-walking sons and I. Logistically, it’s an occasional challenge. Dropping A off at daycare on his daycare day is a fun little parade – he in the stroller, newborn in my carrier wrap, and me shuffling the load through snow with tired feet. There is no real way to lift A out of the stroller once we arrive to his room, as I’ve got the baby on me, so I must ask for help… and it’s never a problem.

When we go places, I necessarily run through the different possible scenarios of transporting the children to and fro. When to take who out of the car when and how and where and what accommodations will greet us at the other end – helpful/understanding people? wheelchair buttons to open doors? impassable steps? pitiful glances? ice? etc. The glances I can get past, but the steps not so much.

I’m transitioning slowly into an asking-for-help person. Generally, I’m an I’ve-got-this person, but with A, I can’t do it all. I literally just can’t.

I’m so thankful to have a super-together, loving husband who is endlessly awesome. And also nearby family who never hesitate to help out when needed (thanks Ma!). But I also now look to strangers, and services, and funding. I must let all of these things in, and in doing so, my load feels a little lighter. Thankful for the new, unexpected company.

The importance of simplicity for a complex mind

There are so many things to teach A, since most things need to be taught before being learned. In the early days, back when I was completely overwhelmed and lost and half in denial, most hours were spent reenacting the frenzy of exercises I’d been taught by therapists/found online/intuited. Gross motor, fine motor, speech, and all the sub-facets of these, were things I desperately tried to cover, so that A’s abilities wouldn’t fall too far behind, and I wouldn’t feel too guilty for it.

Sub-note: accepting that your kid is different is a process, especially when there are no (to you) obvious concerns until someone external points them out. The first year was a panic of he’s fine-he’s not fine-no I think he’s fine-wait no he’s not- type conversations and thoughts. Suspicious of all and any input from others, credentials or not, positive or negative. A sea of confusion. Eventually you swallow the reality, as your kid lags further and further behind, therapists give each other knowing glances, and friends and family furrow their brows and cock their heads, that this is happening. Then and mostly then, you rally your internal troops, puff up your chest, and totally own it. And here we are. Proactive mostly, and proud.

So I was assaulting my child with therapy until it sunk in, after weeks of not much changing, that we needed to trim the fat and focus.

A has serious motor-planning issues, which I believe the medical community would call dyspraxia. I would say this is his primary issue vs. low-tone, possible cognitive issues, possible autism, etc. etc. Being able to plan movement seems to be really difficult for him, as you probably gathered from my previous post about getting up on all fours. So clearly, therapy needs to be very to-the-point and very repetitive. Thus, I try to pick one or two things at a time to work on with him. I choose these things based on what I think would make him happiest to learn next, what would serve him well sooner vs. later, what his current strengths are and how to leverage those, what intuitively feels like a next step, and so on.

Lately we are working on transitioning from floor to sitting and sitting to floor and pointing to a picture to get a thing. We’ll likely be on this for many, many weeks with the odd bits of other stuff thrown into the mix for fun (walker, games, etc.). I will write another time about how we make pretty much every activity/interaction a learning experience (maybe that’s just general parenting?), but here I’m talking more about the big stuff.

Thinking inclusion

I think about the definition of and expectations behind the word “normal” a lot. I started a blog about it awhile ago before realising I wanted to be less abstract about my experiences with A. Here is the link: thinking inclusion

And now I’m realising that I still like to wax philosophical, so will continue to write in both places. I was thinking TI would align with my career somehow, as I work at the Inclusive Design Institute at OCAD U, and think about accessibility most of the time. But I’m not sure how exactly it intersects with paying work.

And now the universe has given me a child that really lets me live out the ideals and thoughts I’ve been thinking about for the last decade. I think it’s pretty great.

I feel like there is a road ahead where all the forks of my life will join into one awesome super-highway, I just don’t know what that looks like yet. But as my good friend Em once said, “if you don’t know now, just wait until you do.”

Fun vs. worry

Sometimes it’s easy to get bogged down by the stresses and worries of having a special needs kiddo. On the floor on his belly he is happy – but I worry about a seizure happening at any minute, jerking his head into a toy or into the floor. In his highchair he is happy – but I worry about him throwing his head back or staring at the bare bulb in the light fixture above the table. In the carseat he is happy – but I worry that he is too warm or cold or…

Lately I’ve been referring back to things I learned in my 20’s. Meditations and cognitive behavioural therapy tips that help de-stress, refocus, balance out. If he bangs his head, he bangs his head, and he’ll be fine. If he stares at a lightbulb, he’ll need glasses potentially, but he’ll be fine. If he’s cold in the car, I’ll warm him up better next time, and he’ll be fine. Take the power out of fear-inflated scenarios by acknowledging, yeah, sucks, but it’s not the end of the world or even a huge deal. Regardless of all my worries, he’ll be fine.

Reminding myself of this lowers my shoulders a little, makes my smile shine a little brighter, and lets laughter come a little easier. Reminding myself of this makes me a mom a little more fun to be around and as a result we all have more fun.

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.

This road

Being A’s mama has been a long and bumpy road that stretches out ahead… longer and bumpier. Would I want it any other way? Yes, of course. I would wish for my son to have an easier go, which would make parenting a lot less scary and stressful. Alas, here we are. Yet I remain hopeful, count our blessings, and recall that this is how life teaches you to live. And a life of things learned is a good life. A is an excellent teacher and I’ve no doubt he will touch many with his light.

Often I see A lying on his back, staring at the ceiling, quiet for what seems like too long for a two year old and can only hope to someday know what he is thinking in these moments. Is it simple or profound? Is it hard or easy? Is it unsettling or comforting? Will he ever find the words to tell me about it – will I find a way to teach them to him?

Lately, I’ve further realised just how much of A’s future abilities depend on us… it is easier to be passive and wait for things to happen but unlike typical children, who’s minds are sponges easily soaking up the world around them, A seems to need constant encouragement to let the world in. We massage reminders into his muscles, we smile directly into his eyes, we prompt/point/play in ways that say “We know you’re in there and you’re awesome. Show me you know that.” and we wait.

And in this space of waiting is where I have learned things. Patience, obviously. Acceptance, of course, as there is no alternative. Love, also obviously.

But also surprising things… like how far I can fray and still be confident in my strength. Or how confused and unsure of myself I can feel, yet still trust I know how to keep him safe. Or even how blind a pursuit can be, yet still finding answers. And how to find peace with a lack of answers.

I owe my son the world, as he gives me mine.