Epilepsy and neurodiversity (can get along)

Coming off the heels of a post about numerous seizures, it might be a good time to delve into the whole “this is a gift!” vs. “this is a terrible sickness” discussion that seem to plague many a special needs community…

AHHHHH.

We just cannot think of people, inherently complex beings, in polarizing terms. Neurological differences can sometimes come hand-in-hand with neurological disorders like epilepsy but the latter cannot be used to define the former as pathological.

If someone has depression, we would not consider his/her entire being as diseased, but recognize that they are suffering somehow, and work to help ease that problem. Perhaps this is a shoddy comparison, but you get my drift, right? In fact, having gone through depression myself in the past, it’s often something I look back on lovingly as a very hard time that gave me immense, grounding knowledge.

Brains are infinitely complicated computers that can sometimes run into wiring issues – it happens to every one of us. Negative thoughts, obsessive thoughts, headaches, vision issues, fatigue, you name it… some obviously more serious than others, but all possible symptoms that can happen as a result of just having a brain. With stigmas, our culture has come to categorize some symptoms as more meaningful than others. The more chronic or holistically-affecting, the more it leaches into defining the person by that issue… and sometimes influencing whether we choose to pass that person over, or invest our time, love, commitment, etc.

If you’ve read other posts of mine, I can sometimes get very reverie-y about the fact that A is an incredibly interesting kid because he is neurologically different. I really do believe in and celebrate neurodiversity, all of the time. To me, being interesting is superior over being typical. I don’t mean neurotypical, just typical… fitting in, being predictable, operating on automatic, etc. But I try to keep myself in check with the whole “he has superpowers!” or “he’s totally the best BECAUSE he has disabilities” because… sigh. His epilepsy is an endless fucking bummer, and I’m sure he’d likely cash in his motor planning issues for the ability to walk and talk in a second. Let’s stay real.

But here’s the thing, I think: innovation comes from adaptation, peace comes from letting go, acceptance, and appreciating the good things when they come, wisdom is born out of struggle. And A is in a position to experience all of these things, always. It’s all he’s known. So it’s inevitable that in time, he really will become an exceptional human being. Not because of his disabilities, not because of his superpowers, not because he is sick, not because he is neurodiverse, but because he is simply human.

If that seems muddled, it’s because it is.

Quick seizure update

In the interest of fellow parents following along with the seizure part of things, here’s today’s email update to the neuro nurse. It’s my first time in awhile sitting down with the numbers and a calendar to add up weekly totals. I always meticulously document each day, but clearly need to do this big-picture analysis more often. I’m guessing the reply might be to go back up on clonazepam and see if the tonics go back down. Sigh.

I should also mention we’ve all been sick this week so that could help explain the jump in numbers in the last while.

Lots of tonics lately. Here are my records so far.

M=myoclonic cluster (some ~2 jerks, some ~15), T=tonic, D=drop. I left out the screaming ones but he has roughly 15 of those each week.

aug:
week 1: 29M, 2T (tonics new)
week 2: 35M, 2T
week 3: 22M, 4T, (clonaz decrease)
week 4: 11M, 4T (clonaz decrease)

sept:
week 1: 7M, 8T
week 2: 14M, 2T (clonaz decrease)
week 3: 15M, 9T (clonaz decrease)
week 4: 10M, 17T (clonaz decrease)

oct:
week 1: 6M, 23T
week 2: 9M, 21T, 3D (drops new)
week 3: 14M, 41T, 1D (clonaz decrease + clobozam started)

He’s now at 1mg AM/0.75mg PM for clonaz and 5mg PM for clob.

Audio-casting…?…!

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.

 

 

Thankful

“What are you thankful for honey?”
With a full mouth, hubs replies, “chorizo sausage, you?”
I smile the smile of a wife going on many years with many more to come.
“Oh, everything.”

We have received a lovely life, know this, and are thankful for it… cured meats and all.

A has never seemed a burden to us, in any way. He is our child and although he comes with a unique list of needs, so does our other child, and every child. There is no need to pity us, and I’m sure those we know do not, because they know us and feel our happiness, but there are others that seem to, by default, when they learn we are parents to a special needs kiddo.

We had a meeting yesterday with yet another Dr. (after an over year-long wait list) who seemed to, in an effort toward understanding, project a sense of profound sadness, that as a result of A’s obstacles, we might be very sad. “At some point, you will likely want to see a grief counsellor.” We are sad, about some things. We are sad about seizures, mostly, the medication, and generally anything that might bum A out. But seizures take up literally just minutes of all the minutes in a day and I would say that in a pie-chart of A-ness, our feelings of sadness would be a relatively small slice.

!!!

I want this blog to convey a sense of celebration. I need to spruce up the blog theme to include balloons, fireworks, sunshine… Hubs and I often say to each other, “A is such a neat guy, eh?” or “Pretty cool we get to have a kid like A”, etc. Seriously, we feel this, we really do. A good life is an interesting life.

It doesn’t mean I don’t have fatigued, weary phone calls with my mom about how there’s so much to understand, learn, deal with. It doesn’t mean I am the epitome of health, happiness, and well-being. It doesn’t mean I’m balanced, well-rested, or even always coherent. It means that the love I have for A is a light that shines within me, and all is right and bright in the world as a result.

 

In the wind

I think as this journey continues, as I settle into the rhythm of mothering a special kid like A, the importance of documenting our life, of puzzling through each moment, of anticipating every avenue of possibility… feels less. Not that I don’t want to document, puzzle, anticipate. Not that I don’t still do these things, in my own way, less publicly, but the importance… is less.

These days, all of my energy seems to go toward making sure we’re all clean, fed, clothed. Making sure the car has gas, the bills are paid, the dog hasn’t been forgotten about. Making sure I am prepared and focused for work days, CHEO days, therapy days, etc.

And in between, so much dreaming. Wonder. Reverie. So much that is not this. I guess with both kids in daycare, with time passing, there’s space to think about other things. Like making elusive, messy plans around reckless business ideas, bizarre vacation destinations, ridiculous creative projects, even maybe… taking up golf?

Then something small happens. An 8yr old neighbour meets A one day and asks me, “do you babysit this kid?” and I just have to stop and seriously wonder what the heck this life is all about and how it’s all connected and where do we get all of our ideas about inclusion, disability, life… But in the next breath he encourages, “when he gets older he’ll be able to push the wheels!” (of his walker) and I am steadied. We juggle ideas in front of A, about A. No he’s not tired, he’s feeling the wind. Do you know what epilepsy is? That was a seizure – he’s okay. What’s he doing? He’s jumping because he’s excited.

And I wonder what A thinks of all of this, or if he’s even paying attention. I want to write this down so I can maybe ask him someday, about these puzzling moments, about what possibilities for interaction lie ahead. And maybe years from now he’ll tell me, or not. Either way, here we are, two happy dreamers.