Progression

There are moments where I feel completely at peace. They are kind of rare, granted, but I’m doing a better job of at least noticing when they happen, filling myself up with it, and feeling how good it feels. It is so healthy to just chill out.

When A was 5 months old, I noticed a flat spot happening on the side of his head. It’s when this roller-coaster began, really, as I made an appointment then at the nearest early intervention centre. Google taught me the words plagiocephaly and torticollis. I was FREAKING OUT! My perfect newborn had an imperfection – was it solveable? cureable? undoable? Was I too late? too casual? too ignorant?

Thinking back on that time, 2 years ago, I can’t help but chuckle a little. If the cosmetic woe of a flattened head was A’s only issue I would be GIDDY (plus now I see it as part of his unique beauty). Alas, as we know now, the therapists noticed there was more to it, eventually, and eventually, with more input, tests, and research, I accepted this realization as well, and here we are today. It inspires both worry and reverie.

Thinking back I also see in myself the panicked rush to CORRECT and NORMALIZE – one’s culturally innate response to align with regularity and regard anything else as pathological. It’s gross, how automatic the reaction is, to freak out. How scary “different” is. How much unknowns can shake you to the core. When really, REALLY, this is the rich space of life – it’s the marrow of the bone. The curve balls, the windy roads, the paths least taken… this is where you find yourself, your life, and both become far more fulfilling and interesting as a result.

Our brain achieves its knowing from differentials – it is the most basic building block of human thought. Hot/cold, soft/rough, big/small. Each opposite has a neutral connotation and yet when we’re talking about the differences in people, in neurology, it is healthy/sick. perfect/broken, intelligent/slow.

I hope we can move away from the obsession of fixing and get more into equating. It’s better to chill out.

Wondering about thinking

I enjoyed this post from Emma’s Hope Book. It is about how 12yr old Emma thinks. She says, “Know that I am almost always happy and take great pleasure in sounds, color, fabric.  Everything in life is beautiful if you are able to be here.” So good.

I hope for my son that he is also feeling this level of enjoyment in life – that though he often seems distant, it may just be that he is seriously present. I looked back at him in the car seat on our ride home from Ottawa yesterday, awake and watching out the window, thinking. A few times I caught him smiling hugely, for no apparent (to us) reason. How I yearn to someday tap into all of that! How beautiful it might be.

Since A’s been asleep and miserable for over a week, we haven’t “worked on stuff” in what feels like ages. It’s given me pause – what to pursue, where to focus, what is important, what leads to what. I don’t know. I never really know. I’ve often read that it’s most effective to work around a child’s interests (duh), but I don’t really know what those are. To even find out that A had a bad ear infection, never once grabbing at his ear or trying to show us what hurts, kind of underlines for me how wide our disconnect in communication might be.

My true wonder lies in knowing that he is able to make choices – he can physically lift his arm and grab at something he wants – but only does so on rare occasion (not including feeding as he feeds himself easily). Even when I offer him two motivating choices I think he would like to give input on (i.e. which food to eat, which cartoon to watch, what book to read), he often won’t choose. Sometimes he does. What distinguishes choosing and not choosing? I think back on the PECS video of A, and his desire to choose is dependent on the right choice being present. How do I offer enough things, out of all of the things in his world, when I don’t know what it could be? And how do I do this without overwhelming? And how do I offer such quantity and still respect his level of fine motor abilities? Oy vey!

The grind

Quiet evening with wine, comfy pants, and a movie after a long day at CHEO – A had a neurology check up, another EEG, an organ ultrasound, an EKG, blood tests, and I’m probably missing something. What a wonderful hospital though – the staff are always amazing with A, and they seem to really try to make things run as smoothly as possible for us overwhelmed parents.

The ultrasound and heart stuff are part of a general workup they’ve been doing on A to check… kinda everything. With genetically unique kidlets, it seems like they try to cover all bases to make sure everything is as it should be. A relief to confirm that physically speaking, little dude is top notch. All of his issues are neurological.

That being said, A’s neurologist is stumped. His seizures are not yet controlled and the latest med, started a few weeks ago (valproic acid), has made him so heavily sedated he’s been sleeping 22hrs/day. Weaning off of it already. She’s not sure where to go from here so is handing A’s case over to a colleague that specializes in more complex seizure disorders and has experience with the less common meds.

We’ve also been dealing with a week of fever for A – after being told on day two to wait it out, I brought him to emerg yesterday since he wasn’t getting any better and found it had become a nasty ear infection. Antibiotics have been added to the menu. Probably another reason why he’s sleeping so much as well. So. many. variables! Bodies are ridiculously complex machines. We find it quite difficult sometimes to report back about A’s seizures and the effects of meds since it is all SUCH an uncontrolled experiment.

The EEG technician made my heart smile by saying, “These kids have brains that are just wired differently. They might not be able to do a lot of the things we can do, but their brains can do things we can’t – I wish the world made better use of that.” Someday, I have faith it will.

Tough week for little mans but as his uncle said earlier, “what a little trooper”.

E as teacher

I have a little blog-hangover from writing so aggressively last post about when people ask me how I’m doing. Though I aim to remain true to my own experience, I know there are other parents of special needs kidlets who appreciate when these questions are asked. To know that  there are willing listeners nearby, caring and understanding. Maybe I just need to relax – I perhaps take for granted how supportive my friends and family are, and how much that does to anchor my confidence and well-being. Still, I find our interactions with the outside world endlessly fascinating, and will continue to rummage through my thoughts on inclusion, acceptance, assumptions, and expectations.

Anyway!

So it’s so great to have an active 5 month old around – he can teach us so much, without even trying! I’ve been reading “Kids Beyond Limits” and am particularly intrigued by the importance of what Anat Baniel calls “random movements” in teaching the brain to map the body. Like how babies seem sorta spazzy and kind of flail around without purpose – this is the body teaching and the brain learning.

A doesn’t experiment much with his body, and now, watching E, I realise he never really has. He sticks to what little he knows, and tries to make the best of it. Out of curiosity, I want to try and replicate some of E’s randomness with A. A’s body is so full of resistance tho, that I’m not sure where to begin. Small, I guess. Tiny, little movements that are new.

A fellow mama has also alerted me to the wonders of the Masgutova Method (MNRI) which has to do with integrating the body’s primitive reflexes. Sometimes for special needs kids like A, the process of growing out of reflexes didn’t mature, or got messed up somehow, and this method teaches the body how to merge in these essential movements.

So cool to have both boys together. E is already almost crawling – up on all fours and rocking and trying to hop forward a little, and doing so many strange, wonderful little gestures in between.

What’s up doc?

A feels normal to me, of course, because he is mine. I know him well – he is himself, his awesome self. I’m totally comfortable being A’s mom and it doesn’t feel weird or especially different to me to parent him. Sometimes I forget that the rest of the world can find him surprising, and then I’m like, “oh yeah!” Sometimes I forget that the rest of the world can find ME surprising and then I’m like, “oh, weird, yeah!” Honestly, I feel pride when we are out together, but sometimes it seems others may be confused by this.

Yesterday we met our new family Dr.  She’s going to be great, I think. First, the nurses took A’s height and weight and I had to explain that he doesn’t yet stand or speak, etc. It’s hard to describe the vibe I get in these situations but it sort of feels as if the other person is confused about why I say these things in an unwavering, happy voice. For me it is an FYI-he’s-not-there-yet factual relay, but it seems the other party is expecting me to cry or sigh or roll my eyes and frown. Things get quiet and there’s an “oh, shit” in the air. There’s a look of… pity? sympathy? like they want to give me a hug.  Sometimes it even seems like they want to inform me, as if I might not already know, that something is up if he’s 2 and not yet doing these things. There’s a look of “you know that’s not normal, right?” Ha! It’s all kinda weird.

The Dr. did a similar thing with “So you’re his primary care giver… how is that going?” and “Are you doing okay with all of this?” It catches me off guard. Of course I’m okay. I’m his mom and I love it. I want to shout out – dudes, it’s not so bad! Really!

And then I think… wait, is it? Am I suppressing a deep, profound pain that will someday bubble up and crush me if I don’t soon acknowledge and talk about it? I know that the Dr.’s questions were genuine. I’ve received them elsewhere too, from well-meaning, caring people. But they seem like an invitation for me to breakdown and wallow, and I don’t want to. It doesn’t serve me or A in any way, and it really wouldn’t be genuine of me. Of course I have my moments, like any parent, but I find the expectation of me to be inherently sad and somehow broken… alarming and even insulting.

Then I wonder, are people reading this blog and feeling sorry for me? Or are they jealous I get to have such a unique and special parenting experience. Maybe somewhere in between. Do I care? Should it change how and what I write about? When I happily hang with A in public, we have cheerful chats and lots of smiles, and I wonder – do people think I’m putting on an act? As if I’m over-compensating for A’s silence and apparent lack of interest/awareness? My happiness is true. I like to think that expressing this is, if anything beyond what it is, a public service for unconditional love and acceptance!

Unfrightening

A couple of weeks ago the daycare called to say A had a strong seizure and hit his head. Could I come pick him up immediately as he’ll likely need stitches. This was my first big scare and it scared me. Hubs and I met up at the daycare and we all went to the hospital’s emerg and it ended up being surprisingly deal-with-able and fine. A had a jerk into a metal doorstop screwed into the floor and split his forehead (ouch), but was quickly mended with some medical glue (i.e. super glue – bizarre!) and didn’t seem too fazed by the ordeal. For me, it was a learning moment… I now have proof my son is a lot hardier than I imagine him to be. He banged his head on one of the worst things I could think of him banging into and survived. Though I’ll always worry, as a mother does, this incident has had the unlikely effect of calming me. Weird, right? The seizures are still frequent and strong and unexpected, but we’re hoping the new med, now at the right level, will help soon. We’ll also be looking into helmet options for when he’s crawling around… sigh.

I bought a used vehicle today, to replace my dying car, with the primary “must-have” being it can easily transport A’s walker. We also now have a handicap parking pass. It all can feel strange, at times, but mostly it is normal and good. Soooo ready for spring!

Complex and beautiful. Exhausting and exhilarating. Endless, but always with new beginnings. With A, moments are dynamic. Sometimes so… deserted, but always vibrating with potential. And sometimes, sadness. And sometimes, just joy.

There are times where it feels like my whole world could change on a dime, but it isn’t true. My heart will flutter or freeze at any number of things but at the end of the day, this is what it is, and we are who we are. It is love. Solid, undeviating, fulfilling love.