Distilling communication methods

Found a couple cool things in my most recent googling forays this week:

Halo-Soma’s Rapid Prompting Method and a very helpful vid of it in action with a younger child. I will be trying this with A. I like that the kid in the video seems at times totally uninterested/unaware, yet is often neither. A does this with me as well – I get the “I’m not into this ma” vibe a lot, but I shouldn’t assume. Soma also insists on “presuming competence” by giving a kid age-appropriate material, despite outward abilities. That it’s even harmful to do otherwise! One can help motivate communication through learning. Because A is so behind, I’ve little sense of what a 2.5yr old is capable of intellectually, so I pinged a homeschooling mama friend for thoughts on teaching material, and she recommended Five in a Row, preschool version, but with the stipulation that play and freedom are of utmost importance at this age… there is a whole lifetime ahead for formal, structured learning, so ease into it.

I’m soaking up this incredible blog, Emma’s Hope Book, written by writers with an autistic daughter. Emma uses a graduated method of RPM to communicate her ideas. Her mom is beautifully introspective about it all, as I sometimes like to be too, and so it feels familiar to read her words. I particularly appreciate her realisation that it is generous of Emma to communicate in a way that we can better understand (words). Emma says, “Words are not as meaningful to me as they are to you.”

This blog post was also an important thing for me to read, amazingly describing what it’s like to be both very intelligent and non-verbal.

I think about A’s seeming passivity in communicating with me – whether it is just too difficult, or whether it doesn’t feel as meaningful to him, or both.

EEGeez

Since I reported that A’s seizures dissipated significantly, late Dec/early Jan, they’ve slowly crept back up again to happening at least a few times a day. We have no idea why they took a little break, or why they’re increasing. They’re still short, but strong, and more frequent. Like one or two jerks that jackknife him suddenly. I’m back to living with the anxiety of injury happening unexpectedly, at any moment, without warning.

Results from A’s latest EEG: not good, even (how is this possible?) worse than his first EEG last summer, when seizures began. Non-clinical seizures, generalized bursts, abnormal activity… all phrases describing the same thing – the boy has a very busy brain. The neurologist is guessing this seizure activity, much of it happening without us seeing anything, is likely contributing to developmental delays as signals to the brain are getting interrupted constantly.

We started another med this weekend  (valproic acid) with hopes it’ll calm his mind. Big, big hopes. I honestly thought things were better, since his seizures are significantly shorter on the clonazepam, but I suppose it’s not actually calming things, just bringing them down a notch so we don’t see the seizures as much. Out of sight, but not out of mind.

I also let the Dr. know we were following up with a naturopath and a food sensitivity test to see if diet could help, and that we were also trying gluten-free. Not in so many words, she basically said that stuff was BS, his issues do not appear to be metabolic, and don’t cause yourself more stress than need be. I get that that makes sense to her, but I still feel very strongly about the correlation of health and diet, particularly neurological health and the foods you give your brain. My thoughts are also, “why not try it?” and more desperately, “I will try anything.”

Dizzy

Just a quick note to say I’m reading more about A’s main sensory issues: vestibular (balance) and proprioception (where you are in space). I like this quirky read about vestibular sense. The idea that movement is research, and more tactile input is necessary for orientation. This comparison is interesting:

Have you ever been in a car and thought your car was moving forward when in fact the car next to you was backing up?

Wild to imagine that A might feel this confused about his place in space a lot of the time. Actually dizzying to just think about it.

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.

Until now

Sometimes it’s easy to wish the time away – to want the future to arrive so badly the present fades into the background. A will eventually do the things he’s not yet doing. He is delayed but capable.

I think: “once A is walking, then we’ll go____” or “soon he’ll tell us and then I’ll know ____” or “when his seizures are controlled then we can ____” etc., etc. I put things off. “It will be easier…, he’ll be more aware…, it’ll be safer….” I’m tired of the excuses. My beautiful 2 year old is craving activity and input and life experiences.

I found a therapeutic horse farm nearby! I will call them tomorrow but I am excited because this sounds awesome to me, even though I am not a horse person and never have been, I know there is magic in large, quiet mammals and A is also magic so it will be doubly so. Maybe he’ll hate it but maybe he won’t.

This idea needs to guide me more. Try things. Try everything. Go out into the world when you can, and bring A with you.

Experiment mentality

Lately I’ve been pursuing forum threads that suggest alternative therapies. Little minds are so beautifully complex, no one really knows what sort of stimuli will entice positive change, especially when you’re talking about literally unique individuals. So in the spirit of trying all kinds of things…

To read more about: hippotherapy, sensory enrichment therapy, a neurodevelopmental program, MNRI (Neuro-Sensory-Motor Reflex Integration), Floortime, aquatherapy, and so on. The only thing is that living in such a rural area, specialists for these specific therapies are few and far, so absorbing as much as I can on my own, things that we can practice at home. Some of these programs offer online courses you can follow along with, so that might be the way to go too.

We will also be trying out massage, craniosacral therapy, and naturopathy on top of the usual PT/OT/SLP. Our household went gluten-free this week… waiting for advice of naturopath before eliminating other things, like dairy. I’m quite interested in what a food-sensitivity test might reveal for A – he has more seizures when he’s stressed/tired so diet is an obvious place to look for clues.

Careful to not get too overwhelmed and jumbled up – both A and me, we’ll start with what’s comfortable, maintainable, covered-by-insurance, and mainly… what feels right and good. Natural progression, baby steps, organic.

I’m particularly drawn to the sensory enrichment idea. A often seems under-stimulated, bored, dull, tired, uninterested. We already know he is hypo-sensitive, so it makes sense that he should be given more. More beautiful and interesting scents, textures, music, images… I’m excited by this because these are things I seek in my own life -, these are things humans are meant to experience. Fresh flowers, long baths, classical music, comfy pillows, art, etc. It’s a project I can really get behind! To “wake up” my child with the pleasures of nature and culture and just being.

Word book

6am with coffee. Mr. A woke early so hubs brought him in with us and E, making for a family bed of snuggles. I watch my little man with his daddy and I know he knows he’s so very loved. In the dark, I make out a little arm reaching for the sky – it’s A looking at his hand move around, something he sometimes does. E’s obliviously snoozing, swaddled and adorable. I get up to light a fire and stay up to write. More, I feel like enjoying the morning quiet. And coffee.

Someone from an AAC group posted this beautiful ted talk.

I dunno, once I stopped sobbing, it inspired an urgency in me to work harder at getting A to communicate with us – I’m not sure how much agony he feels from not talking, but I know it would cheer him in so many ways, to let us know what’s up/what he wants/who he’s thinking about/etc… more practically and likely: food and toy requests.

I hear him now making his unique A-sounds. Happy sounds, maybe with hidden words in there, I can’t tell.

Yesterday afternoon I warmed the car, snuggled E into the back seat (coldest winter everrr), and drove off to Staples on a mission. New cartridges for the printer, a 1/2″ binder, thick plastic binder inserts, velcro, and the piece de resistance: a laminator. Goodbye extra $100 I don’t really have – it’s time to make A a word book.

After posting the video of A using PECS, a SLP suggested to me two things: give him a “no” or “not here” option and also, get him a PECS book, like this one, for more words at the ready. Buying one looks to be… too much money, so I took my queue from the endlessly motivated Uncommon Sense mama and went with the DIY option. It’s easy. Velcro strips on a binder/on the inserts and pictures. Lots and lots of laminated pictures.

We’ll see how it goes!