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.