As a new dimension to the prism of life that is life with A on the interwebs, and because I use to be a musician, and because I’ve recently become obsessed with podcasts, and for other reasons… some known, some unknown, I will soon be offering the content of this blog in audio-form, as well as written.

To start, they will simply be narrated blog posts, but I expect they will become peppered with family sounds, life sounds, maybe some music from hubs and I… maybe none of these things and instead just quiet tea-sipping in the late, reflection-y nighttime.

If this sounds interesting to you, I just added a little form over on the sidebar —> where you can enter your email address and add yourself to a mailing list of sorts, which I may or may not use, but seems like a good thing to start up, as I stretch myself out into the spaces that exist.

Celebrations are visual, aural, emotional. Life is so sensory… we do what we can on the internet to warm one another, feel each other’s stories, send out light, and grow the love.



Communication and making deposits

What relates “yes” more to you: a happy cloud? A big checkmark? The word in bold on a green background? Is “no” a big, red X or a circle with a line through it? Ahhhh. The amount of time I’ve spent thinking about this insults my expectations that communication should be… natural, intuitive, even easy. No, it will be work.

I know communication with A WILL happen but I don’t know if it will be through rigorously teaching symbol representation cards, or through a talker that says a word when you push a button, or spelling things out on a letterboard, or or or. I don’t know. Luckily, there are so many things to try.

In my random ramblings aloud with my kids, I’ve discovered that A is very responsive/interested in talking about the books that we read. I’ve started doing strange things like incorporating quotes from books into our chats, and he immediately makes eye contact and sends me “I totally know where this is from” vibes. For example, when we eat a meal I explain that putting food in your belly makes you “grow…and Grow… and GROW!” big like daddy (hehe). The grow bit taken from “Little Gorilla”, a well-loved book from his cousins. Then maybe we’ll talk about how the little dude from “the hungry caterpillar” had to eat a lot of food to grow into a beautiful butterfly. It’s cool to know this about A, that he is so taken with the words of his books. Very cool, and will take us lots of places.

Yet another confirmation A’s receptive language is likely good, and he is absorbing all that he hears around him. Maybe audio books would be fun.

I try to think of this time, this time without expressive language, as banking knowledge. And that someday he will show us the wealth he has accumulated.

Anger is not my path

I edited down my last post to remove the small bit of whining. I don’t think it’s shameful or inappropriate to complain, but it’s not how I want to spend my time and energy, especially not publicly. I am so thankful for the supports we have, for the therapists, support workers, doctors, etc, that to say anything counter to this (in times when it’s rocky) is… missing the mark. It is not a unique thing, to be confused in a relationship, especially in one of guide/dependent, gatekeeper/caregiver, expert/mother, but it is an essential time to foster dialogue. These rocky parts are moments of realignment, where all parties agree to meet each other in the same place again. I have respect for the expertise of those in the medical field, but I almost always respect my own mother’s intuition regarding my son’s needs more. And I think that’s okay. It is important for both sides to acknowledge this collision as a rich source of learning, understanding, letting go, and gratitude. But it’s a process.

For many anger is a valuable fuel for “making things right”. It organizes a direction of energy toward a cause and that cause can alter things for the better. Outrage is motivation for change.

Two things:

I rarely feel I am 100% right in something, particularly in these very murky waters of providing for a non-communicative, unique child. I drink in the knowledge of others like a sponge, and try to weigh it all with my own attempts at rationalizing a situation, but it’s rarely ever clear. I really appreciate that there are so many out there with the education, experience, and understanding that I do not yet have. It teaches me important things that I did not know, and this helps me parent A better.

I’ve never been comfortable with negativity. In the past, it made me very ill, and in general I feel at odds with the universe when I bitch about someone else out loud. I just want to suck my breath back in and replace it with something good. It doesn’t do anything helpful and feels embarrassing, sour, and ungrateful. And I truly believe that most of the time, anger is a result of a misunderstanding or lack of communication.

Nonetheless, it is human. For some, it is the necessary part of themselves they must tap to make progress. But for me, it is not. I just get bad vibes and feel self-conscious, so I try to work through it and come out the other side to a place of peace (not passivity, but real peace) about the caring that is all around us, acknowledging that we’re all doing the best that we can.

Happy anniversary

You know life is busy when facebook reminds you “today’s your wedding anniversary!” Hubs and I had a giggle. He grabbed wine and I grabbed pizza so it was all good. But it’s been that kinda summer. It is also the one year anniversary of A’s epilepsy.

A’s now three weeks into the ketogenic diet and seizures are still sucking, but we’re hanging in. I should also update my terminology: what we’ve been calling seizures are actually seizure clusters wherein he has several seizures in a row. So our 10 seizures a day actually means around 30/day, if each cluster is around 3 jerks. Know what I mean? Anyway, lots of them still. Last night he had a rarer one that lasted over 5min (so maybe ~30 seizures within that time). Sounds way more scarey that way, doesn’t it? Ugh.

A continues to be smiley and bright, relative to how he was. We’re loving it. Also with the return of emotion comes more… two year old moodiness, which is cool too. But this morning A was sorta fake-crying and I felt so desperate to have a shared language for him to explain what was bugging him. With a combination of PECS and a chat on the talker, I think we narrowed down that a cut on his finger was sore. I don’t really know tho, since so much of it was guided by me.

Innate primate

Little E is starting to point. His little index finger is the most adorable thing I’ve ever seen. He’s almost 8 months old, and one day last week, boop, his little finger isolated while the rest curled, and he was picking, pressing, and pincering, just like that.

Having kids sometimes make you feel like you’re at the zoo, watching zoo animals, all of the time. (Our house looks like a monkey pen, but that’s another story.) I sit and watch, sip my coffee, and marvel. “Wow,” I think, “that is amazing.” Amazing how the body and mind can “just do” things, all of a sudden, just like that.

“So what new things has A learned lately?” (By lately they mean these past 6 months-ish. Or more. Or less.).

I pause. I tap my chin and make like I’m thinking, even tho I already know the answer. I try to actually think of something, wanting to take this one last time before speaking to see if I can squeeze anything out. “Hmm,” I say, to buy more time.

The therapist and/or nurse and/or doctor waits, pen to paper.

“I can’t think of anything,” I say, frowning.

“That’s okay.”

What I mean to say tho is that I can’t think of anything that words would describe, that you could write down. I can’t think of anything “significant”. There are obviously new things because we all have new things, every day. Maybe today you finally learned how to spell “occasionally”, or realised what a “drive belt” is, or found another useful use for baking soda. If I sat in a room, non-verbal, and someone looked at me and tried to answer this question, they wouldn’t know I knew these things, that I learned these things recently. There is no nicely packaged response that says, “well, it is inevitable that constantly her brain is being enriched and progress is made as a result, whether or not it’s visible, indefinitely. So, yes. But I don’t know what.”

I don’t know what A knows. I hope someday I will learn, though. But I know there are things. He hasn’t figured out how to make his fingers point yet, but he’s busy figuring out other things. I’m sure of it because it is what brains do.

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.

Dialects of nonverbal

There is a type of exhaustion that is not physical. It’s the exhaustion of guessing, predicting, anticipating, preparing, checking in… in every moment, in every way, all day, every day. And even with all of this, the exhaustion of still not knowing if you’re doing anything right, the exhaustion of mistakes. Like landmines you don’t know the location of, but know exist, one walks a path littered with them day in and day out.

Even though E isn’t yet talking, he tells me his needs quite clearly. And with some things I “just know” in a way that a mother just knows the timbre of a cry as meaning a specific thing. When I was travelling in Europe, as an embarrassingly mostly-monolingual gal, I was constantly amazed by how far one could get when communicating with another without sharing the same language. A place to sleep, a good restaurant, directions to the train station. Incredible!

There exists a language of non-verbalness that is quite elaborate, intricate, subtle yet strong, clear, and certain. We’ve all played charades, made telling facial expressions, given someone a hug. It’s amazing, really, what can be discussed without words.

Yet, A does not speak this dialect of nonverbal, the one that is depedent on typical movements of the body. A has his own way of being wordless and as his mom I am of course well-versed. Yet it is still so very misinterpreted, I’m sure.

Though I am not certain of meaning, I am certain of substance. Like hieroglyphs, there is so much with obvious significance, but it takes academics centuries to decipher the true intentions of each inscription. With A, it is just us. But we forge on, acknowledging all of this substance, the mysterious but powerful etchings on our time. We’re weary from the decoding, struggling, but enriched somehow in its presence.

Bits and bytes

Sometimes I wonder what I would write about, all these words, if I didn’t have A. Gardening? Web Accessibility? Juggling? Juggling gardening and web accessibility? I’m glad I have my little dudes. They inspire, delight, and amaze beyond anything else in my life.

I brought E to the doc for his 6 month shots and checkup today. So strange having a “typical” child (more like super baby – he’s already crawling, sitting, rolling when most I think are just rolling?!). Everything is just… fine. There are no red flags, or gasps in my heart, or deep-seeded worries. E is just fine, and I feel like he might always be. It’s so… relaxing. Is this what it’s like for other parents or do I feel this way because I have A to contrast?

I bought two of these protective headbands from a curt and unfriendly woman over the phone today (she loosened up at the end, surely corroded by my insistent charm… or was it my mention of epilepsy?). Hoping it could be enough, cos mang, the seizure helmets are not cute. Or comfy? Alas, we might spring for one as well, as A reaches new heights, literally. A jerk into the floor from all fours is one thing, but a fall from walking is another. Fucking seizures! Ahem.

I found an ABM practitioner nearby (i.e. 1.5hrs away), which I’m sort of excited about. Our first session will be on Thursday. They actually recommend doing an “intensive” which = 2 sessions/day for 4 days in a row. Cha-ching! But I believe it when they say it’s the way to go re: neuroplasticity. That brain sure can be stubborn sometimes. Alas, that would be too much of a commitment to start, I think. We’ll see how this first one goes. Or should I at least make it two in one day (one at 10am, one at 2pm)? It’s the beginning of a new THING in which I must JUGGLE (wink) the needs of two childs at once while being away from home and without hubs. E is still exclusively breastfed (with foods starting this week-ish), crawling and into everything, and A is A. Will manage, just processing the details of what this type of day might look like.

Horse-riding starts June 5th, which I am also totally excited about. It is also another THING to process logistically.

Tonight at dinner I thought about Anat Baniel’s recommendation to “start where they are now” and instead of having a regular chat with everyone (A & E, hubs away), we squealed, babbled, shrieked, and giggled at each other. It was ridiculous and I’m glad there was no one around to witness it, but the boys DUG IT. I think they might’ve thought, “uh, what happened to mom? she’s losing it” but it was hilarity. I thought A might want to chime in more if we were speaking with his sounds. It worked a little – he had some things to say. E was in stitches.

Another early bed time. Props to the single mamas out there. Hubs home Monday night. Zzzzz.

E on the move

Nothing to do but everything

Ok A! What would you like to do next? *hands him PECS book and beams excitedly*
Alright my love, just pick something – anything! – and we’ll do that. We’ve got some toys here, and some cartoons. Here’s a picture of your walker, or the swing. Which one? Can you show me?
Nothing, eh? Are you sure? There’s a “none” card here you can choose if none of these are what you want. (still workin’ on the concept of none).
*flips page of PECS book* How about this page – anything on here? Maybe you want a snack, or a drink. A nap maybe?
Alright, how about we play with blocks. Let’s build a tower.

^^^ This is often how things go throughout the day. As I have learned many times, this often means that what A truly wants isn’t represented on a PECS card in front of him. I know (or know as much as I can know) that if he wants something, and it’s an option in front of him, he’ll reach for it. He knows how this works, and he uses it enough to take advantage of the system. Still, I impose my own personal choices on what we do when there’s no input from him.

What I’m realising tho, in writing this, is that instead of being all, “well ok, I’ll choose this for you and we’ll do that”, I think I need to take his silence/inaction as a statement: “give me something new mom cos I am bored of all of these things.”

I’m so thankful for daycare, not that it gives me a break (I would rather him be with me, hands down), but that it exposes him to different things and people. He comes home with artwork, experiences, friends. I don’t know how much of his day is actually filled with stimulation – I know there are minutes (hours?) spent just sitting and watching the other kids, but even so, I am thankful he is out in the world, and there are other people chipping in to give him interesting activities to do. Whether or not he participates is up to him, but at least he’s given a choice.

A in sensory tunnel

Presuming competence

I’ve read about, absorbed, and fully defend the need to “presume competence” in non-verbal and delayed kids. We thus expect that A is cognitively level with his peers and talk to him and play with him at an age-appropriate level.

Today I told someone this, when I was showing A’s PECS book, and the response was, “oh, really? okay” as if this was a novel approach, or even silly. Gahhhhh…

I forget when I read about presuming competence. It was somewhat recently but when I read about it it was like gospel to me. My whole being felt that it was right and good. And also, duh. I think the documentary on Netflix  A Mother’s Courage got me started. And then coming across Emma’s Hope Book, as well as reading about Rapid Prompting Method to communicate and Anat Baniel ‘s book Kids Beyond Limits. Proof, time and time again, that intelligence is there, in these mysterious children. And sometimes more than intelligence – sometimes profound wisdom.

I’ve never really had any doubts about A’s smarts (whether it turn out to be academic or otherwise). I tried thinking about it once, a serious lack of comprehension, and it seemed off. I think during this time I felt like presuming incompetence might be more helpful to my son – in case he needed things slowed down, simplified, or just not bothered with. Not sure where that horrifying thought came from, but I think it could just be a natural inclination in our culture to see different as less (and the fact that such a primitive thought came from me, his cheer-leading, inclusion-oriented mother, is even more scary). Shudder. It does give me pause when others fall into the same line of thinking though, that this is currently our natural/stupid assumption, and so I don’t feel anger when it happens, but rather a real need to preach and dole out resources.

As many have said before, and I will say again, to presume competence will cause no harm but to presume incompetence could be detrimental and even traumatic.

A at one year old