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.

Keto update

A’s seizures have increased from 4-6/day before the diet to now double, around 10/day, and a lot more screaming during them. Yet bizarrely, it still feels like we’re going in the right direction. It’s early yet, and tho clearly A is not one of the lucky children to immediately become seizure-free a day or two after starting the diet, he could be one of the lucky children to become seizure free in several months. His Dr. thinks it’s likely related to the valproic wean too, and adjusting to that. Patience, patience, patience… and wine. Wine is good. And coffee.

My side of managing a ketogenic diet is going just fine – the choosing of recipes, weighing, planning, etc. to me does not seem like that much more work than planning and preparing any meal. Two things that’ve changed to try to make life easier/better for us all are: I started eating meat, after 16 years of vegetarianism (there’s a great shop nearby that sells horomone-free, grass-fed, happy-animal, local meat), and we bought a microwave, which we mostly thought of as being unnecessary and kinda silly. Both have been good choices in terms of simplifying and streamlining a busy kitchen life.

Been inspired to pull out the iPad mini more often, and model AAC. It ebbs and flows, but should be more consistent. Looking for a cheap, used iPad so we can have one for each kid, since it’s really really hard to let A use it without E interfering, and I believe E should have access to language too. Also, an iPad is bigger, and bigger buttons might help improve A’s usage of it.

I’m working on a new project to go along with this blog. It will be… interesting! It takes away from some of the writing time here but I think you will like it.

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.

Full stops

There are few things that highlight one’s failings in life like being honked at by a school bus in a populated daycare parking lot. Sigh. For the record, I had followed the empty bus in, saw no children on the curb (school’s out!) and thought she was being nice to let me pass her before pulling out the stop. I generally park in front of the building, along the curb, because A is so freakin’ heavy – already a faux pas I’m sure. But she whipped that thing out as I was going by and then laid on the horn as I did so. The fluster and embarrassment such things can cause is almost a danger in itself. It must’ve been a timing drill as the handful of women on the sidelines with clipboards shot me looks of daggers and I made a lame “oops” face. I quickly thought, “if they only knew how much work it was for me to get to this point” (and still be late, and still look frazzled) but stopped myself at the indulgence.

How careful a parent must be to guard oneself against the disappointments of the world, when already some days can be a struggle. Uncomfortable moments can be crushing, unless you know the drill: shrug, sigh, swear if it applies, acknowledge the okay-ness of one’s imperfection, make a mental note to never do that again, and continue on.

After erroneously dropping A off, I proceeded to the grocery store to pick up more essentials for A’s diet. And in this parking lot, I realised I had forgotten my wallet. So I headed home to furiously weed the garden while E slept in the car seat.