The neutrality of peace and the certainty of chaos

If anyone is still out there, you’ve noticed I no longer write here. It’s not that life is not still wonderful and confusing, but that I’ve accepted the wonder and confusion for what it is, and it’s softened my desire to publicly ponder. Quiet reverie.

I feel more comfortable now, in this unique-ish mothering role – a little less bewildered and clueless, and a little more in-the-know and fortified. And with that, ready to move on to more bewildering things that I am clueless about.

I’ve started a new business that has been slow (so slow) to ramp up, with little (so little) time. It is named after A and called Arch Inclusive. The services I offer are the services I currently know how to do, and it’s nothing too exciting really, but still exciting. I have been working in this field (digital accessibility!) for 12 years now but have dreams to get more real about it all. You know, make a difference.

I won’t share any specifics that illustrate the enormity of my vision, but generally, I hope to grow a business that not only supports, but demonstrates, the significance of an inclusive community.

A brief update on our guy’s epilepsy, while I’m here: success with cannabis, then rocking the boat with weaning the keto diet. We’re currently back to square one seizure-wise, but with previous successes in July (5 seizure free days in a row!), we are optimistic about finding our footing once again. Slowly, surely, as with everything.

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.

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.

Intelligence & intellectual disability

I think a lot about the definition of intelligence. It is such a fuzzy word. Everyone (as in, everyone) has something about them that is… clever, deep, profound. If you have a brain, you’re already complex and interesting. That’s just the way it is, it’s a given.

When I was a camp counsellor for Easter Seals, many years ago, there was a boy in my cabin who was… not of his body. He didn’t move or speak, he was blind, he needed help with everything. At this time I had a lot of compassion but not much practice in presuming competence, so I remember mostly talking over him, to other people. One day at the beach stuck with me tho – we were lying down on a blanket in the grass and I sang to him… and he sang back. It was a high-pitched sort of humming sound, but there was no mistaking it was him, making music. I think in this moment, among many moments at this amazing place, I learned to appreciate that people are never as they might seem. We are all thinking creatures.

All this to say that lately, on forums, other blogs, facebook groups and what not, I run across so many parents who have resigned themselves into thinking their child is intellectually disabled and is therefore limited in terms of things she/he might accomplish. Now, intellectual disability is a real thing – it is a relative term that means in relation to others, so and so learns more slowly. It is mostly correlated to one’s IQ score, but not definitively. They also calculate in things like how one adapts to his/her environment, self-care, communication, social skills, etc.

Acknowledging an intellectual disability in someone may be helpful when it comes to accommodating a certain situation or academic lesson, but it does not mean intelligence is mutually exclusive. And by intelligence I mean clever, profound, imaginative, incredible, inspiring, original thoughts. Thoughts that reflect an understanding in something particular, not necessarily popular or common place, but specific to one’s experience, interests, and ideas.

I want to say to these distraught parents… this only means you’ve been given a gift. It is a gift, a purpose, a reason to go over and above what you know now. Shatter what you think you understand about what makes someone intelligent, look beyond what you see in front of you and imagine the vast depths of possibility residing in your child’s mind. It is there. It is. Presume competence, not by assuming aptness in a specific skill, but by believing in the power of the brain to learn, adapt, rewire, and transcend any limitation you’re tempted to project on to it. In fact, make it immensely easier for yourself and your child by projecting nothing, limiting nothing, and celebrating all that will be.

E vs. potatoes

The student becomes the teacher

I just want to reiterate how much “presuming competence” has done for the well-being of our family. Everything feels more okay. The here and now, the future – both seem less awkward and scary. Exciting even. Yes… exciting! And maybe I’m projecting a little, but I swear A is feelin’ it too.

I grabbed a couple of books from Value Village this morning that describe learning activities for 0-3yr olds. Sort of like teacher guides. They’re both excellent and will really help me understand and put into action some age-appropriate educational material. Part of my struggle in hanging out with A and presuming his 2yr old competence is that I have no real idea what a 2yr old is and isn’t capable of, generally. Sometimes I think I might be going beyond what he’s ready for, that “academically” I’m expecting too much, simply because I don’t actually know.

One plus of daycare is getting to hear a little about the things they work on there and including it in our stuff. Shapes, colours, basic counting are all things they teach pre-schoolers… but I want a bit more input. I guess I am realizing that a lot of learning will happen at home (duh) but I’ll need to read up on what exactly that should entail for a bright 2.5yr old boy.

Another thing I’m trying to better identify is what sorts of things capture A’s attention. For sure SHAPES. Geometric patterns, plaids, shadows, etc. So I often scout VV for shape related books. LETTERS also seem interesting to him. I bought some weird toy for a few bucks that has all sorts of large letter tiles and a stage to use them and some electronic component. Let me see if I can google it, since I’ll need instruction on how to use it… Yes, this thing. (Yes, I often get suckered into buying yet another plastic gadget toy, thinking maybe THIS will get A’s interest. It’s time to bring a box BACK to Value Village of all the toy choice failures that are piling up). MUSIC most definitely is a love of his, but what kind of music I’m not specifically sure of.

You know how some kids are really into PRINCESSES or DINOSAURS or a particular cartoon character? I want to figure out the things that A loves, and better surround him with those. Use them as springboards for learning, for practicing AAC, for inspiring movement, for outing ideas, etc.

He does seem to love DORA the explorer. What is it about Dora? I think it could be her insidiously high-pitched, shouty voice. Ok, maybe just her good cheer and love of adventure.