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.

Calm, happy, safe, competent

This incredible post has so much, so much, so much. But the words that I have copied and pasted into my daily notes are: “calm, happy, safe, competent”. Beautiful advice to any parent on how to nurture a child, and I think I already infuse these elements of goodness into my children, but having some words to focus on can be a useful guide.

It echos an article I read recently about intractable epilepsy, outlining a paper that researched the factors that affect an epileptic child’s quality of life. Some of the factors they examined were things like types of seizures, duration, other disabilities, etc. but, in conclusion, they underline that those with strong familial and peer support had more favourable outcomes. The seizures themselves were of less importance:

Analysis of these data found that peer support, parental support, and mental health had the greatest effect on QoL, with seizure status exerting “a weak, indirect effect on QoL only through the child’s mental health.”

Um, isn’t that sort of amazing? Or is it obvious? I can’t tell. But it is at the very least, an extremely important aspect of this life, this life in raising a special needs kid.

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.

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.

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.

Compare and contrast

The compare game is tough. I thought I was done playing many months ago, but it creeps back in unexpectedly, and now I wonder if it’s even possible to stop. This morning, while in a perfectly good mood, I drove past an elementary school and saw a group of little boys kicking a ball around. I nearly burst into sudden tears! I’m generally pretty good at insulating myself from the thoughts that follow: will A ever run, be motivated to kick a ball, have friendly peers, have this kind of fun, be a little boy at play? I let myself consider he might be the lonely kid in the corner, kicking at dirt, muttering to himself, being made fun of… no. It’s too heart-breaking. It’s also too far into the future. A bridge we’ll cross in time… or will we?

I know E will to some extent be A’s guardian at school. The thought makes me want to have tens more children, build an army behind him, to wrestle to the ground anything that threatens the well-being of their beautiful brother. How silly and primal that sounds, but how footed in the real world. I can fool myself into thinking kids are growing to be more accepting, with each generation of growing acceptance, but really kids are kids and differences are targets and man, A will be different… or will he be?

I can try to piece together a future, but not really. I don’t know what will be, or even close. That’s part of the difficulty in being A’s mom. And it’s part of the wonder and greatness. A could become an athlete, maybe even the cool jock at school. Or he might be the strange kid in the library. Or not. Or everything.

The tears didn’t come because I know I don’t know, and I won’t know until it happens. And that might be later than typical, but I can stave off sadness for as long as it takes, and likely in that time these thoughts will have dissolved anyway, into the nothingness that comparison gives you.

 

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 question

In my head I have an answer at the ready for the question “so… what’s wrong with him?” It’s a statement that gets revised often. Some days it’s punchy and defensive. Other days it’s nonchalant, casual. Sometimes it’s direct, factual, no-nonsense. Some days it’s simply “nothing.” I used to keep this answer on the tip of my tongue, when out and about with A, thinking the question’s asking was inevitable. What I’ve found though is that it’s not so – either no one notices, no one cares, or no one needs an explanation. Either way, it’s a hat-trick of obliviousness that suits us just fine, and I have relaxed about the whole question thing.

Still, in my head, the answer is under consideration a lot of the time. Maybe it’s for myself more than anyone interested because it feels like a kind of mothering manifesto. What I’d choose to say is so loaded with A’s history, my journey as a mother, and my beliefs on inclusion, communication, understanding, and love. I want to acknowledge the struggle but convey a sense of gratitude for all of it. It’s hard, but it’s good. I want to explain his uniqueness but without too much variation. He is different but the same. I want to be real about his neurological issues but celebrate neurodiversity. He’s awesome not “despite” a disability but as a result of an extraordinary special set of abilities.

See how it can get complicated? Plus there’s the whole undiagnosed, syndrome without a name thing. By nature, there is no easy answer.

If someone asked me today I would say something like, “he has trouble controlling the movements of his body.” To me this relates several things, easily: it presumes A’s competence, it tells it like it is, and it is neutral in drama. The actions in his life require more effort than most, for both of us, yet here we are, and we’re having a pretty great time.

Explaining to children seems like a different ballgame, though. At daycare I’ve heard some kids call A “the baby” and I understand why. He arrives in a stroller, crawls, squeals, needs help with lots of things, etc. But I think the same answer works here too – and I think, as I do, that A can teach his peers a lot of interesting things, just in being his rad self and doin’ his thang.

A is a delegate for the inclusive future. Until we figure out the communication thing and he can introduce himself, I hope in all his diverse encounters with new people, the adults or friends around him present him in a respectful, positive way. I know this won’t always be the case – as I’ve said, answers are difficult – but I think if the seed is planted, starting with us, it will thrive and grow outward into his community, and become part of the local consciousness…

I just have to wait for someone to ask.

Adorable A at one year old.

Writing in a blog

Writing every day in May is fun, mostly. Sometimes I am tired and it’s late and I haven’t written yet, but I try to get some words down anyway. I am enjoying the reminder that “just showing up” to a commitment is a good thing to do. Even on my less inspired days, I enjoy the process of thinking of ideas and words and lining them up in a certain way. And I can appreciate that the practice is helpful, not just as a writing exercise, but as an introspective mother.

The thing about parenting young children is that there’s not often time to pause and think long and hard about stuff. One can zoom through a day, busy busy busy, and when head hits the pillow, that’s that. So it’s necessary to ear-mark some time for reflecting, carving out a space to breathe a bit, and look at what you’re doing from a quieter perspective. Writing, gardening, running, etc. Some days are less creative, when it’s harder to get away, but there are still moments to be had – hanging clothes on the line, having a bath, sitting on the porch petting the dog for a few minutes. It’s just good to pause, to appreciate what you’ve got and how you’re handling it.

I offer my particular rambling thoughts publicly because I think parenting a special needs kid is especially challenging in this regard – SN kiddos have less of an instruction manual than typical children. With typical kids, we sort of know what to expect when and can compare notes with other parents on what they do when and so on. With A though, it is more adventurous. I generally don’t know what I’m doing most of the time. And as things reveal themselves along the way, there is even more adjustment, contemplation, and wonder while assimilating new variables into the equation.

As I’ve said before, I write for the other parents out there, for some camaraderie, but I also write for another cause, realised along the way. And that is to remind you (and me) that people with special needs are just the same as any of us. That seems like a ridiculous sentence to even write, but sometimes we need to be hit over the head with these things. We are each other and an inclusive society reflects this. We help one another along the way, we share love, we live life.

I want a future for my son that is warm and inviting and challenging and fulfilling. As an adult involved in shaping that future, I’m inviting whomever’s reading to join me along the way – spread the word, reach out a hand, and work to change any societal constructs, big or small, that impede someone’s chance to fully realise her/his abilities.

I honestly don’t believe I’m this self-important (tho imagining something is important motivates quality), but quelling just a bit of the darkness is still worth shining a light.

Here’s to becoming more bright.

Just be

I may have given the impression that I am a constant do-er when it comes to mothering A. That our days are filled with therapy appointments, home exercises, communication methods, educational material, Dr. visits, and so on. But it’s not so. I would say most of our time is spent just being.

Some special needs parents may be horrified by the idea of what seems like idleness. I know in the beginning I certainly was. What can be accomplished when nothing is actively pursued? How does “more of the same” foster progress? Maybe he is stuck and needs unsticking, all of the time, through a myriad of helpful alternatives. I googled “ABA” since I heard it’s the thing to do with kids on the spectrum (A is not diagnosed autistic and I’m not sure he ever will be though he certainly shares some traits). I googled special needs schools. I googled neuro “protocols” and programs, looked up specialists, frequented forums, all with a possessed frenzy to find someone, anyone, to tell me what I should be doing with our time.

Coming through the other side, the side where worry, confusion, and alarm has mostly dissipated in the wake of enjoying an awesome, interesting kid, I no longer have any desire to normalize, segregate, or indoctrinate. To me now, those are horrifying ideas.

There is of course something to be had in learning routines and social behaviours, receiving specialized programming, enriching each day with specific additions. I am referring more to the general, militant idea of reprogramming a child in order to fix/correct them, fit them into a conceptualized mold of success, and how that is presented as a healthy and good choice for parents. I understand why people choose it, it feels so good to have an answer, but it’s not from asking the correct questions.

Relax. Everything is as it should be.

I’ve seen firsthand how healing and restoring meditation is. It just is. It is natural, important, soothing, and the ultimate path to happiness and peace. I let my little A meditate in his own ways often during the day.

Sometimes I interject – I do want A to participate in the world as well as reflect on it, but not at the expense of reflecting on it. I try to let him observe, sense, enjoy whatever we are doing, often in a very passive way: I just let him be. I bet it’s pretty annoying to have someone interrupt you constantly from whatever thoughts or feelings you’re immersed in, but I try not to be too annoying. I try to time it right, encouraging a good balance between internal/external worldliness.