Compare and contrast

The compare game is tough. I thought I was done playing many months ago, but it creeps back in unexpectedly, and now I wonder if it’s even possible to stop. This morning, while in a perfectly good mood, I drove past an elementary school and saw a group of little boys kicking a ball around. I nearly burst into sudden tears! I’m generally pretty good at insulating myself from the thoughts that follow: will A ever run, be motivated to kick a ball, have friendly peers, have this kind of fun, be a little boy at play? I let myself consider he might be the lonely kid in the corner, kicking at dirt, muttering to himself, being made fun of… no. It’s too heart-breaking. It’s also too far into the future. A bridge we’ll cross in time… or will we?

I know E will to some extent be A’s guardian at school. The thought makes me want to have tens more children, build an army behind him, to wrestle to the ground anything that threatens the well-being of their beautiful brother. How silly and primal that sounds, but how footed in the real world. I can fool myself into thinking kids are growing to be more accepting, with each generation of growing acceptance, but really kids are kids and differences are targets and man, A will be different… or will he be?

I can try to piece together a future, but not really. I don’t know what will be, or even close. That’s part of the difficulty in being A’s mom. And it’s part of the wonder and greatness. A could become an athlete, maybe even the cool jock at school. Or he might be the strange kid in the library. Or not. Or everything.

The tears didn’t come because I know I don’t know, and I won’t know until it happens. And that might be later than typical, but I can stave off sadness for as long as it takes, and likely in that time these thoughts will have dissolved anyway, into the nothingness that comparison gives you.

 

Trusting time

As much as I enact the “let him be” method of parenting A, there is a parallel anxiety running under the surface that is sometimes hard to ignore. “Do something!” it calls out. Do more than nothing, in this moment and all of the other moments, just do more. It is also a symptom of my mishmash approach to therapies. Typical in my life, I can do a lot of things well but nothing that amazingly, and sometimes I worry that the sheer quantity of stuff in my head regarding helping A just… stalls me. It can feel like piling a mountain of rocks in front of us or oiling the road, depending on the day.

And then there’s yet another thread woven through this fabric, alongside passivity and anxiety, a calming presence that soothes: “Don’t worry, in time.” Ah, time.

Time is what keeps everything from happening at once.

On my spacier days, I believe that the future has already happened and that there are glimpses of it from here (Déjà vus? Naw. But, feelings and serendipities.). To me this doesn’t change anything or direct me in any way, but it does calm me profoundly. I always feel like everything will be okay, even when it’s not, it still is. Things keep happening, always. There is always forward which is eventually better. Time is progress, in this case. Time actually is progress. The brain learns, neurons connect, and wonders occur.

(As an aside, did you know some researchers think déjà vu is a neurological abnormality? And that they’re investigating particular genes associated with it? I’m jealous of the future people of the world just for the inevitable, fascinating breadth of knowledge in neurology that will be available. We know nothing now, but we will! Genes are totally figure-out-able, if you’ve got hundreds of years to spare.)

I truly feel that A will be a-ok, that his fate is amazing, somehow, and that his destiny is shiny and bright. It is a very familiar, comfortable knowing, as if it’s already been confirmed by time.

So in the moments where I feel like I need to do more, whether or not it moves me to action or inaction, I console myself gently with the fact that time will take him places either way. Time will be by his side, leading him along the good path of life, guided by our voices (our cheers!) or whatever he chooses to listen to, and there he’ll go, onward always.

The question

In my head I have an answer at the ready for the question “so… what’s wrong with him?” It’s a statement that gets revised often. Some days it’s punchy and defensive. Other days it’s nonchalant, casual. Sometimes it’s direct, factual, no-nonsense. Some days it’s simply “nothing.” I used to keep this answer on the tip of my tongue, when out and about with A, thinking the question’s asking was inevitable. What I’ve found though is that it’s not so – either no one notices, no one cares, or no one needs an explanation. Either way, it’s a hat-trick of obliviousness that suits us just fine, and I have relaxed about the whole question thing.

Still, in my head, the answer is under consideration a lot of the time. Maybe it’s for myself more than anyone interested because it feels like a kind of mothering manifesto. What I’d choose to say is so loaded with A’s history, my journey as a mother, and my beliefs on inclusion, communication, understanding, and love. I want to acknowledge the struggle but convey a sense of gratitude for all of it. It’s hard, but it’s good. I want to explain his uniqueness but without too much variation. He is different but the same. I want to be real about his neurological issues but celebrate neurodiversity. He’s awesome not “despite” a disability but as a result of an extraordinary special set of abilities.

See how it can get complicated? Plus there’s the whole undiagnosed, syndrome without a name thing. By nature, there is no easy answer.

If someone asked me today I would say something like, “he has trouble controlling the movements of his body.” To me this relates several things, easily: it presumes A’s competence, it tells it like it is, and it is neutral in drama. The actions in his life require more effort than most, for both of us, yet here we are, and we’re having a pretty great time.

Explaining to children seems like a different ballgame, though. At daycare I’ve heard some kids call A “the baby” and I understand why. He arrives in a stroller, crawls, squeals, needs help with lots of things, etc. But I think the same answer works here too – and I think, as I do, that A can teach his peers a lot of interesting things, just in being his rad self and doin’ his thang.

A is a delegate for the inclusive future. Until we figure out the communication thing and he can introduce himself, I hope in all his diverse encounters with new people, the adults or friends around him present him in a respectful, positive way. I know this won’t always be the case – as I’ve said, answers are difficult – but I think if the seed is planted, starting with us, it will thrive and grow outward into his community, and become part of the local consciousness…

I just have to wait for someone to ask.

Adorable A at one year old.

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.

Making waves

It is strange to have a 4 month old who has skills that surpass those of our 2 year old. It is very strange indeed. Incredible to watch how quickly E advances, from day to day practically, in the way he moves, how he interacts socially, how he plays with toys. Each day he seems to be playing with a little more complexity, picking up subtle nuances in behaviours around him, inching his way closer to a choice destination. We watch him in amazement.

A has been crawling for the last couple of months. I think I forgot to mention it before so I’m mentioning it now, since it’s a big enough deal to be documented! He rarely army crawls now, and is mostly up on all fours. Although you could call it 4-point crawling, it’s more of a hoppity-hop adorable water-spider method, so we’re working on getting him to do the side to side thing by encouraging one knee forward, then the next.

The detail with which we need to breakdown a movement for A is… sometimes astounding. Literally every muscle needs to be taught how to do something, specifically, over and over and over and over. What’s amazing is that it works. Given enough time and practice, he can do what we’re teaching him, and do it well. Just this past fall, when I started this blog, we were excited when A would do a push-up. It’s easy to lose sight of his progress, as it comes at such a slow pace, but when I stop to look back, it is actually amazing how much he has accomplished.

There is no reason for me to think that his next something couldn’t be anything.

A good reminder for me as I stumble along attempts at meaningful communication with A. So far, no dice. His PECS word book isn’t much of a hit, and he doesn’t seem interested in using pictures at all now. Not that he really did much before, but he got the gist and gave it a go. Now he does his “yeah I’m not going to participate in this” type behaviours (closing eyes in absolute boredom, throwing head back, or wiggling away).

The AAC app that I’ve been modelling with is still only that – he’s not interested in interacting with it on his own. I was doing some hand-over-hand pointing with him, but have since learned that’s probably not a good way to go as it encourages him to be passive about yet another thing, an important thing. So I keep on hitting that “more” button before each handful of eats, and the “drink” button before each slurp. ZZzzzz. Maybe we’re both bored of the monotony? Perhaps I need to turn on some better buttons and sit and chat with him instead. I dunno.

I just need to keep in mind that A’s journey is not a quick one. We’re on a rowboat, not a highspeed train. Being on a rowboat is beautiful if you let go of the rush around you, forget the destination, and dip your feet in the water. This is how it will be for awhile. Once he reaches something, there’s always something else. He’ll make waves in his own, quiet way and they’ll reach the shore.

So while E zips by, A will be lolling, but both will be happy.

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!

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.

And we have lift-off! (from zero to all fours)

As I said, we’ve been working quite a bit on gross motory stuff. At newly 2, he is finally pushing up onto hands and knees on his own! Here’s how we encouraged him:

Push-ups
In the early summer we did a lot of pulling up on his middle/hips and saying “up! up!” to prompt him to do a little push-up. We were also having him play on the floor, over our leg, so that he was supporting himself with arms straight, in the four point position. Eventually he was doing push-ups on his own, randomly, adorably, and being quite proud of himself (we call it “making the proud-face”).

Getting over stuff
The next thing we did was get him to crawl (he army crawls) onto couch cushions, and over our legs, while playing on the floor, luring him up and/or over with treats and current toy obsessions. We did this for months, and I could notice him getting stronger and more confident each week, and also his bum and legs becoming more involved in his army crawling.

Hanging out on all fours
Just last month-ish, he started holding the all fours position for longer and longer lengths of time, when placed on the floor in this way. Often too, when he did one of his random push-ups, we’d cheer “knees! bum up!” etc. and pull his hips up to follow his push-up.

And finally…
Last week he did his first all-fours on his own – he’s done it a few times since but today…today he’s doing it over and over! So far, he belly-flops to get out of position and continuing inch-worming around, but you can tell he’s processing the possibility of moving his legs/hands instead.

Physio has suggested moving each of his hands forward and back to get him more comfortable with one-handed support and hopefully encourage movement vs. flopping.

Stay tuned! Am hopeful 4-point crawling is around the bend, and that crawling in this way will lead to things like pulling up on stuff (since he’ll be a smidge higher up in the world) as well as playing on his knees.