A busy life

Life. It’s a beautiful, trying, evasive, immediate thing.

We’re heading into an adjustment for all as I return to work from my mat leave next week. E has started attending a nearby home daycare and is totally settling right in. A relief. And A will be going up to 4d/wk at his daycare and also moving into a preschool room. The leaves are changing colour.

The wood is piled, the nights are cooling, the wind smells like apples. Every meal somehow incorporates tomatoes and/or zucchini.

Every hour seems dedicated to streamlining. How to smooth down each task, like rocks in a river, so that they eat up as little valuable time as possible, run smoothly and efficiently, feel satisfying instead of draining. In itself, an endless fight against entropy, lack of sleep, the propensity of small children to create endless messes.

To fit in things like visits with friends, strolls along the river, baking seems not yet attainable, but someday, once we all settle into the new normal.

A broke his Kidwalk walker with all his wild jumping – a large, substantial spring literally broken in half! We’re waiting for a replacement to be sent from the States. We’re all really missing his independent, upright time. He’s tirelessly throwing his head back – from kneeling, sitting, standing, being carried, etc. It’s quite exhausting to police and cringe-worthy to watch. Might try a sensory suit and some exercises that encourage flexion vs. extension. A and all his different facets of struggle. Struggle or substance? He’s beautiful always.

We hired a private speech therapist for extra communication help. It was SO HELPFUL to get her input. Working on implementing her recommendations. More on that later.

Still daily seizures for A, but less lately. We decreased the clonazepam and think that might have helped. Maybe it’s giving the ketogenic diet more of a chance, or maybe it’s just not helping period. EEG and neuro appt in a couple of weeks.

Currently half way through my first four hours of child-less time in… almost a year? It feels comfortable, quiet. But I miss my kids. But it’s time. Time for us all to do things apart, receive the richness of life that comes from leaving one’s house, and then come back to each other and share all that we’ve learned.

Genies

The genetics appointment yesterday was basically pointless, yet still took up a full day with the waiting around, 2hr one-way travel time, meals away from home, etc. Neurology asked them to scan for genes that are known causes of myoclonic epilepsy, to see if any of A’s are affected, in addition to his known microdeletion. Likely not, and even if there is a hit there, it won’t change things or tell us much more than… avoid valproic acid. Which was already a try and fail.

We did use this time tho to get all of our family’s blood taken and sent to Georgia State University for a study there. One of the researchers seems to be particularly interested in the genes that A is missing, so we’re signing up as a data point. It too won’t tell us much more than what we already know, but it’s our contribution to SCIENCE! Maybe someday A will have a paper written about him. Today, I must scan and email 50 pages of consent forms.

Weirdly, his neurologist wants us to add another medication called Lamotrigine. I say weirdly because we are still just 6 weeks into the ketogenic diet and from what I’ve read, it can take longer than that to tweak/click. In the meantime, medication can gets in the way. So why add more? Especially when the likelihood of yet another drug working at this point is quite low.

At yesterday’s appointment I exclaimed, “Nobody knows anything!” because… it’s true. It’s all such one big experiment. There are no sureties, comparisons, or predictabilities in this realm of the undiagnosed child. There is only time. And perhaps luck.

Do we start a new medication, especially when the last one was SUCH a bust? Do we remain patient with a limiting, time-consuming, pricey diet? Do we attempt to chart the waters of medical marijuana oil? Time, guide me. Universe, give us luck. Let our scientific donation pay us backward in this circular orbit of space-time.

E contemplates ginormous zucchini

Giddy up

Lately when I sit down to write here, tedious updates about A’s medical stuff spews forth. Life with A is so, so much more and yet still, every moment is tethered to how that medical stuff is going. Every seizures, and every minute between, is weighted. I hold my breath for the former, and my breath holds me for the latter.

Some crappy ones lately – long and scary. I rock him and coo, “hang in there bud, almost over.” I stroke his hair and coax, “take a deep breath, relax.” I know these words are more for me tho, that I am speaking to myself. A listens but he is busy managing himself in his own way. Then a seizure grasps him, his eyes dart to mine in panic, and I try to smile, I confirm he will be okay. It is for both of us that I keep steady. It is for us both that I soothe, comfort, smile. Together we wait for it to be over, and together we savour the time in-between.

E has started taking steps! He stands, steadies, makes sure someone is watching, and steps forward. Beautiful, courageous, confident, joyful. It is just fabulous, every time. Soon, I’m sure, he will be running. A few days after his first steps, he turned 9 months. Unbelievable, really.

A has enjoyed his own fabulous milestones. At a few months shy of turning 3, he has figured out how to get himself into sitting. Previously, it was something we would plop him into but now he transitions! Beautiful, courageous, confident, joyful. From sitting to all fours and back again.

He also had his first (of 8) horse-riding lessons. Too sedated and ill to attend last session, he was moved to the Aug/Sept round – so thankful he is so much more aware and awake and happy to enjoy it. Dude rocked it – so excited, unafraid. So open and free. I panted alongside, simultaneously holding him up on the horse, resisting his tendency to throw himself backward, yet still encouraging him to sit up straight. I tired to let my muscles celebrate his joy vs. tense from worry. We’ll both get stronger, I’m sure.

Back to CHEO on Monday, to meet with the Metabolics clinic this time. Apparently his poor reaction to valproic acid might indicate… something? Will know more soon. I’m not looking forward to more testing, but definitely interested in whatever more can be learned. Not sure we’ll ever discover “an answer” or anything, but always great to get more clues and find out new things that help him feel well.

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.

Inclusion and unlearning

A now has a special diet to go along with the rest of his special-ness. I love him so much, and I hope this food clicks with him – it’s totally worth putting in the extra time to feed him in this therapeutic way. So far, no big changes seizure-wise (maybe a touch more, actually – tho I’ve read that often they can dip into being worse before getting better), but lots of energy/awareness. Not sure how much to credit the diet vs. being off the valproic.

I’ve resisted emailing the daycare’s director to thank her for accommodating A, for providing the attention and care that he requires, because I wonder if this might be the opposite of what inclusion looks like. If I truly have faith in a mandate to incorporate every child, a thank you for meeting his needs doesn’t seem appropriate – I should assume it is just so: normal, easy, natural, and not putting anyone out. To commend might insinuate it wasn’t expected, and that would be strange.

Tho I’m sure I can phrase a thank you in a way that doesn’t imply “you’ve given extra of yourselves” and instead says, “you do what is good and right and I so appreciate this.” I am thankful for inclusion and to those that practice it daily. I will send something soon.

Today as I presented A’s ketogenic lunch and snack (neatly measured, labelled, and packed by me last night) and the rules that go along, I realised the zeal I feel for this new chapter might actually be felt as burdensome for others, regardless of good intentions. It made me feel deeply sad and worried for A’s well-being. In the end tho, the zeal seems to be mutual, and I am again very thankful for the kind and thoughtful people of the world. We’ll make whatever we need to work work however it needs to, with whomever’s involved, and I’ll try to feel indifferent about any “impositions” – rather, I will refuse to see them as such.

I’m naturally apologetic, polite, quick to get out of the way. Yet to say “Sorry, but X, Y, and Z” when talking about A’s care frames things in a light I never want to shine on him, I never want him to overhear: it is a trouble to care for you. I feel the exact opposite. I am honoured, daily. I find it difficult to reflect this in words, particularly when instructing others, without sounding unappreciative, entitled, ignorant to the fact that there is learning and energy involved. I therefore try to pepper what I say with lots of smiles and enthusiasm. Or when writing, with smiley faces and exclamation points. It’s exhausting to police oneself in this way, a balancing act between presumption, respect, dependence, and gratitude, without making it too fuzzy so as not to be clear.

When reading about homeschooling, “unlearning” is a term sometimes mentioned. What I’m saying has nothing to do with homeschooling, but everything to do with unlearning, so just mentioning for context. The niceties and social language that I have absorbed over the years is sometimes in such conflict with how I truly feel about things surrounding A and his needs. I am teaching myself another way. Language has its landmines. Sometimes things flow out of my mouth that I am not comfortable with, simply because it is just “what you say”. Can’t think of a specific example right now, but it happens. Maybe I should make business cards for this blog. I’m sure A would love his mother passing those around (not!).

“Acceptance” implies power in the accepter, for being generous enough to allow the way one exists to be allowed.

“High or low functioning” measures against a scale of things not really measurable, where “functioning” is subjective to whomever’s using it.

“Accommodation” has strange connotations that subtly imply allowance. It’s the activity of an infrastructure to sigh and rework something, grudgingly making room for someone on the margins of typical essentials. If accommodations need to be made in an existing system, it is proof that inclusion isn’t inherent. Nonetheless, it is often the best thing one can hope for these days (we live within so many archaic systems) so it is a satisfactory effort, such as it is.

I also struggle with “getting permission” for things, when what I’m asking is necessary for my son’s ability to exist as typical children do. But that’s enough ranting for one day.