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.

On communication

Although A is currently “non-verbal” in that he doesn’t speak to us, we are pretty sure he will… someday. He gives it a shot, it just doesn’t come out right yet, likely due to his motor planning issues. Here’s a short vid of us having a little breakfast time chat:

A does not yet mimic, or point, or wave, etc. but he obviously has stuff to tell us. With his speech therapist’s advice, we are encouraging accept and reject communication so that he can feel more empowered with what’s going on, especially around people other than his family who innately sort of know what he wants and does not want. His “accept” is to reach for something but often he will just look at the thing he wants… so getting him to consistently reach would be good. His “reject” is to push/bat away, so that’s pretty clear.

I find sing-songy questions get his attention well. You can hear me doing it in this video with “can youuuuu saaaaay…”. He knows that this requires a response from him, and the back and forth of a conversation is understood.

He also has mild low muscle tone, which is why his mouth is often open and he sometimes drools. We’ll be doing some cheek massage to help bring awareness and tone to his lips and cheeks, which will help with forming words as well.

I’ve yet to get going with the PECS cards, but I know it will be successful once we do. A is great at choices (hold two things and ask him which he wants, and he will reach for one) and he also loves pictures and books. When asked to make a choice, he really considers each option seriously before choosing. I’ve emailed his speech path some photos of his favourite toys for her to make PECS tiles from – really motivating stuff is a good place to start with this.

We haven’t pushed the iPad for communication yet, but I predict we’ll get there within the year. I’m not sure where he’ll end up with reading and writing, but the picture stuff is going to be good!

Potential mysteries

Hubs and I have an almost daily exchange that goes something like this:
“A is so awesome.”
“He totally is. Such a sweetheart too.”
“Yeah. I just love him so much!”
“Me too. He’s awesome.”

I’m pretty sure the general awesomeness of A is noticed and appreciated beyond his doting parents too. There’s something about the kid that makes you want to scoop him up and snuggle and read and play and chat and hang out and get to know him. Because I like to over-analyze things, I’ve been trying to define his magic better and one big part of it is, I think, his potential. His potential and also the mystery behind it. We know that he’s capable of lots of STUFF, we just don’t really know what or when he’ll do it. He’s sort of like a Christmas advent calendar, for lack of a better comparison. Each day reveals a new, cool thing and that makes hanging out with him particularly interesting.

That being said, it’s likely this feeling is felt by all parents as children, special needs or not, are host to so many interesting wonders. I would say though, that A’s got another layer of mystique hidden within expectations of him. Unlike typical children, we have a foggier sense of what he will achieve next, and that makes what he does achieve kind of amazing to us.

With E, my seems-to-be-developing-normally two month old, any new sounds and movements just seem like business as usual. Still amazing, but without the extra magic. He’s just regular magic, you know?

All of this is a sort of prologue to A’s latest accomplishment… yesterday while playing on the floor, A was facing the couch on all fours. He put his right hand up onto the couch, then his left, and up he went into standing! We already knew he was capable of pulling up, but this is the first time he’s got himself into position and initiated the action on his own. I was surprised! He’s going to get into all sorts of trouble now… I’m excited for him.

Regarding expectations, I predict something we’ll need to be sure to shield him against, out in the world, is his being underestimated. I have some notes from A’s daycare regarding integration tips and one of them is to let him take “a few steps” holding someone’s hands whereas A could probably walk to the moon and back if they were up for the trip. A gentle reminder that it is MY job to communicate the details of his abilities so he’s not stopped short.

The notes also state that if the walker turns out to be something he’s successful at, we’ll bring one in to stay at the daycare (an old Pony walker). Well he’s got the walker DOWN… complete with backing up to reposition and move forward in a different direction, etc. In fact, I just cleared insurance coverage and ordered him his own KidWalk this morning!

Here’s a short vid of him rippin’ around on the loaner:

Good things in the making

Ok, I’m almost well. Hope to get back to posting more regularly now. Seems like there’s a lot to write about – A has been doing really great lately! An updatey post:

I feel much of his progress should be attributed to the walker. I’ll be sad to see it go once our loan is up, but we’ll likely get funding to buy one of his own… it just might take months. In the meantime, we’ll probably borrow some different walkers, to keep him happily touring around upright.

It’s beautiful to watch his brain start to blossom a little more. The walker’s added a new, needed perspective and I think he’s starting to appreciate the opportunities it’s opened up to him – choosing where to go, standing in front of something to play, opening kitchen cabinets, pulling on blankets, etc. In addition to actually physically walking, he gets to EXPLORE further, and we all know how essential this is to childhood and development. He’s always been observant and curious about things, but now he gets to better interact, and with this his confidence in moving and trying new things has also grown.

Our household got an iPad for Christmas, mostly to try AAC (augmentative & alternative communication) with A. So far we’ve been doing very basic stuff with him, to get him used to this new friend. There are some free Peekaboo apps that require just one-touch interactions to make stuff happen, which is good for A as his fine-motor is quite delayed and currently his touching-the-screen is more like batting-at-the-screen. He doesn’t seem super interested yet, but I’m guessing it will grow once he becomes more familiar. In the meantime, looking for some basic choice-making apps he can try, for the communication start.

PECS (picture exchange communication system)
A’s infant development worker printed out and laminated some picture tiles for us to try using with A. She also gave me a little velcro strip that I can stick tiles to, so we can create an array of choices. Will be starting with this in the coming week, likely starting with two basics like eat/drink or more/all done.

Integration at daycare
A particularly exciting development is that A will soon be going to daycare 3 days a week instead of just 1. Though I will miss him terribly, I’m stoked for all he will get to do. They’ve finally received funding to hire an extra worker for A, and interviews will be starting next week. The way it works in Ontario is that the government funds an “integration worker” to help out with a special needs kid in the room. It’s not a one-on-one thing – A’s experiences will be inclusive – but extra support, and a point person for keeping things on track regarding A’s development goals, safety, and needs. As well, his plan at daycare will align with what his therapists are working on – everyone keeping in good touch with one another to all strive toward the same goals. The daycare’s programs are adapted if need be so that A can succeed in the activities of the day. Awesome.

As well, daycare and OCTC (ottawa children’s treatment centre) have together funded some special equipment for A at daycare: a chair and a stander. Currently, A sits in a stroller at daycare (sad face) – the little chairs don’t contain him, so it’s the only way to strap him in and get him at the little table. He’s fed in the stroller as well. The new chair will make a huge difference – it will have an adjustable footrest and safety straps and he’ll be better able to sit and do stuff. The stander is basically a platform he can be strapped into, standing, with a tray. Just another position he can work in, to get him off the floor. We might also see about getting one of the lesser-borrowed walkers from therapy to leave at the daycare.

So far, I’ve been SO impressed with how the all different services communicate with each other and just how much support is readily available. It makes a huge difference! I love that there are so many capable, smart, friendly people involved in A’s care, genuinely enthused to help him progress. What a relief.

Tired times

I often feel the frustration of knowing what to do but being unable to do it. That if I could work with A on stuff more often, he would likely progress faster. I think the context of “unable” is particularly frustrating because… ableness seems theoretically within reach, but just isn’t. Life gets in the way. The new baby, my recent bout with pneumonia (ended up going to emerg on Monday for x-rays and antibiotics… still recovering!), making food, etc. on top of A’s big naps and unwillingness to do stuff, all take time away from the therapy we could be doing together. But it’s just the way it is.

Life would be so much easier if A were walking. At almost 26 months and nearly 30lb, it’s difficult to carry him everywhere (especially in a big snowsuit). Walking, walking, walking. How much longer? This month? Year? Next year? I hope I can physically keep up because I have to.

My own rest, yoga, eating properly – essential yet frequently back-burnered because of the above. As a result I am always tired, sore, too thin, run down, tired.

Resolutions are obvious.

A respitey new year?

Was ROCKED by a flu this week. Today’s the first day I’ve been able to be upright for a useful amount of time, actually change out of PJs, and think about eating real meals. E has a touch of it too so on top of feeling the worst I have felt in years, little man wants to nurse constantly (like, now). But I think we’re coming out of this tailspin finally and beginning a return to normalcy… a world where dishes get washed, toys get put away, laundry gets folded, etc.

At one point I thought, “I wouldn’t wish this flu on my worst enemy!” and then tried to think of who my worst enemy is. Could only come up with the mean driver’s license test guy who failed me when I was 16.

Anyway, happy new year! A continues to do well seizure-wise. It’s sort of amazing. I wish we could know why, but I’m not sure we will. He hasn’t a had a drop since Dec 17th and only a handful of short myoclonics since then too. I think I’ve said before, this is our first break from multiple daily seizures since mid-July. I hadn’t realised just how mentally exhausting they are until this time of… peace.

I’m starting to feel that post-sickness high one gets when coming out of the fog of illness. “Being healthy feels amazing… I can do anything!” and so I’m back into taking-care-of-business mode. I’ve finally started to reach out in search of a respite worker for us. Someone to hang with A several hours here and there, to work on things with him, and to give this mama a little down time.

That being said, I feel a little silly about the respite thing because A is a joy, pretty well most of the time. I bet there are a lot of parents who have little 2yr-old-demon children they could use a break from… it doesn’t seem fair. But it might turn out that our respite takes the form of logistically helpful things like transporting A to daycare and back (a bit of a challenge, as I’ve said before) or taking him to playgroup for a couple hours at the early years centre, which is a similarly tricky thing to do.

I’m stoked for all the delights this new year will bring our little fam, particularly all the accomplishments waiting on A’s 2014 horizon.