Off grid and off script with LSW Karen Moore

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We are welcoming to the episode Karen

Moore, who is from Eastern Ontario, just

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like I am.

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And Karen, we start each of our interviews

with the same questions.

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So this is a way to introduce yourself to

our listeners.

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And we always ask, what are you growing?

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So for our farming guests, that covers

crops and livestock, but it can also

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include families, careers, businesses,

social change, awareness, anything.

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So what are you growing, Karen?

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Well, I am growing my knowledge of living

off-grid in Eastern Ontario.

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I started from a very small knowledge

base, so any movement forward is progress.

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And also growing for amazing young people

who are my children, but I can't really

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call them children anymore because they're

all adolescents and young adults.

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And I would also add growing knowledge and

awareness around the needs of children,

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youth, and adults who experience life from

a different place and really working hard

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to kind of change our idea about what that

means for people and trying to change the

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world, you know, one interaction at a

time.

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Just little tasks, that's all.

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really.

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So can I ask, just because I'm curious,

what is the motivation or what brought you

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to living off grid?

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What was that experience like?

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Well, I would like to say it was, you

know, because it was the environmental

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thing to do, or because, you know, it was

a dream.

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But the honest truth of it is that we

bought 23 acres in rural Eastern Ontario

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and had a dream to build a house on it at

some point.

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COVID hit and we decided, oh, this is the

perfect time to build a house.

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And when we decided to do that and talk to

Hydro about putting in the Hydro lines, it

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was going to cost us an exorbitant amount

of money.

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And so the decision was off grid was going

to be less expensive.

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And so that was the real reason.

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But now that we're doing it, it's kind of

exciting, actually.

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It's kind of cool to.

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I know it kind of sounds hokey, but.

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It's neat to know that you're creating

your own hydro when you plug the kettle

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in, or when anything is being, anything

uses electricity.

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It's like, we created that.

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Like we grew that, if you will.

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And so my excitement for it has grown from

actually doing it.

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It's kind of cool.

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and I'm sure that you think about your

usage a lot differently than those of us

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who just plug it in and there's power

there, right?

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There's, I'm sure there's more of an

awareness of how much things use and what

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you're using it for.

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More awareness, also I know the weather

better than anybody else.

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I can tell you when the sun is going to be

out and how many days of sun.

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And we really love kind of the April to

October time frame because we don't really

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have to worry too much about what we're

creating.

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The October to March time frame, a little

less reliable.

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And interestingly enough,

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It's even increased our communication as a

family because we have to negotiate now,

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right?

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These ideas of, you know, well, if you

wanna use the air conditioning, then you

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can't use the dryer.

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If you wanna use the, you know, the

PlayStation, then you have to think about

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whether or not you're gonna use the

microwave or, you know, on the really,

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really cloudy days in the winter when we

don't get a lot of sun at all, it's like.

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You know, the dryer is, we don't use the

dryer for that many months.

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We don't use the microwave.

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And so it's created some really cool

conversations as a family about compromise

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and choices and just being really more

mindful about who we are in the world and

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having to give in sometimes because

somebody really needs to do something and

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it has an impact on somebody else's hydro

use.

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So it's actually been a really cool

opportunity.

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that's an interesting point.

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So you said your kids are older.

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Can you tell us their ages and how many of

you of them are still negotiating power

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usage in your house?

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So all of our kids are adopted and so our

eldest is almost 28 and we adopted her at

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three and a half.

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Our next eldest is almost 20 and we

adopted her at nine months.

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Our next eldest is 18 and a half and we

did a foster with a view or a concurrent

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placement so we fostered and then moved to

adoption.

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He came to us when he was.

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five weeks and then our youngest is 17 and

a half and she came to us at two days.

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Right, yeah, so lots of, yeah, and lots of

different ways and arrangements, I'm sure,

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of how they came to you.

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Yeah, for sure.

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Sorry, I muted myself and then I couldn't

get unmuted again.

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So Karen, we're talking to you today

because of your expertise, both

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professionally and personally, with

neurodiversity and your work with children

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and families.

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Can you tell us, in your own words, about

your background and your work and such?

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Sure.

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So I'm a registered social worker and I

have a private practice here in Eastern

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Ontario working primarily with families

who are walking the journey of

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neurodiversity and or adoption and

permanency.

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So one or the other or both.

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So I do a lot of work with children, youth

and families where

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the initials of FASD, ASD, ADHD, all of

those labels and initials come dancing

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through the journey.

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And we have a lot of those initials in our

family life as well.

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So I dance that dance professionally and

personally.

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And a lot of work in really thinking about

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What does neurodiversity mean and the

impact of neurodiversity on individual

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lives as well as family lives and really

trying to navigate some of the

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complexities that I would say sometimes

often don't need to be there, but they get

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created because we often have a kind of

narrow sense of what neuro-normative is.

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And if we had, if we would actually just

expand our sense of neuro-normative, a lot

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of the barriers and a lot of the

challenges wouldn't exist.

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And in fact, I could be unemployed and I

would love that.

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I mean, I would obviously move on to a

different level of employment and do

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something else, but I would love to not

have to be helping people navigate some of

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the complexities that are

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kind of put in the way of children, youth,

and families because of the way that we

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perceive neuro-normative reality.

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I think the reality is everything is

neuro-normative and we have created these

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social constructions around what's diverse

and what's not and what's acceptable and

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what's not.

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And it's those human creations of those

labels that actually create the

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difficulty.

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Yeah, I'm absorbing all of that.

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Well, I'm thinking, so you shared, your

four children are all adopted and they had

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various journeys themselves.

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Can you tell us, without getting too

personal into their own experiences, but

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as a parent, how did you navigate those

journeys, both kind of individually and

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separately, because I'm sure that they all

impacted each other, and like the family

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as a unit.

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Mm-hmm.

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Yeah, I'd like to say we navigated them

brilliantly every single time, and I can't

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even say that with a straight face.

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Exactly, and I think that makes it more

difficult sometimes, right?

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Because I think that there's an added

pressure that I put on myself and that

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systems put on me that if I'm a

professional doing this work that

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I must have it all figured out when it

comes to my own journey and my journey

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with my kids and that's far from the

truth.

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My kids have been my best teachers

actually.

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But we've navigated difficulties with

doctors, with schools, with recreation

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programs, with family expectations, with

our own expectations.

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We've navigated parenting dilemmas and

strategies around.

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you know, do we consequence more?

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Do we consequence less?

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Do we, you know, do we take things away to

change behavior?

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Do we, all of those kinds of messages that

we got like everybody else did around, you

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know, this is how you parent a child who

is neurodiverse.

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You do more of this, you do less of this,

you, you know, add this, you subtract

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this, you just need to be more consistent.

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You just need to be more, you know, open.

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You just need.

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there was always you just need to be more

of or you just need to do less of or and

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So, you know those dilemmas and they still

follow because each child is different

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Like you said Arlene, right?

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and so what worked for one child isn't

gonna work for the our next child and

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isn't gonna and What works for child one

on Monday might not work for child one on

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Monday afternoon Hey, like it worked

Monday morning, but it's so

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I think that, you know, came to a learning

of the fact that what really mattered in

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all of this, and I speak about this often

in the adoption work that I do and the

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work that I do with families and in my own

journey as a parent, is that what really

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matters at the end of the day is the

relationship.

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And I'm always now looking at that being

my guide to.

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decisions, interventions, strategies.

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At the end of the day, will this add to my

relationship with my child or will this

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take away?

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And my favorite saying, my partner and I

are favorite saying is five years from now

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is this gonna matter?

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A year from now is this gonna matter?

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And if it is gonna matter, then what do we

need to do to ensure that this is going to

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matter well?

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And if it's not gonna matter a year from

now, why?

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why are we invested in this?

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Why, you know, is it peer pressure?

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Is it pressure from family?

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Is it pressure from the school?

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Is it pressure from wherever?

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And really being able to use that as our

touchstone around the relationship with

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each and every one of our kids is what

matters the most.

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And that's what we're gonna use.

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That relationship is what's gonna keep us

going in the tough times.

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And it's also gonna be what keeps us going

in the easy times or in the good times,

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right?

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And so really kind of thinking about, when

we're trying to come up with a strategy,

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when we're trying to come up with a next

step, when we're trying to figure out what

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the hell do we do now, what's the impact

gonna be on this relationship?

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And that served us well, it served us

well.

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And it has given us the opportunity, I

think sometimes,

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to kind of sit back a little bit and give

some time for reflection.

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There's very few things that we've learned

that need immediate response.

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Of course, safety issues do.

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Issues around life and death, absolutely.

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There's an immediate response there

needed.

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Issues related to the fact that one of our

kids has done something they weren't

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supposed to do or they haven't done

something they were supposed to do.

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That doesn't need an immediate response.

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That can give us a time to reflect, think

about who they are, think about who they

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are in this interaction, who we are, and

what do we want to move forward so that

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our relationship remains intact and we

move forward from a place of connection.

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So it's an important piece, I think.

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really important.

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And I agree with what you're saying, that

sometimes those outside pressures end up

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creating a sense of urgency that isn't

there, right?

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Where if you have a teacher who is only

teaching your child this year, they wanna

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see results within, you know, this time

period before the next report card, before

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the test, all that kind of stuff, or, you

know, whatever the situation may be.

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But you're right, sometimes our responses

are gonna be...

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things that take longer or that aren't

gonna show an impact for a long time.

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So thinking about things in that more

long-term connection type journey is

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really important whether our kids are

neurodiverse or not.

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Yep.

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So, Karen, I just added a question here,

and I hate the wording I'm about to use,

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but I couldn't really come up with

anything better.

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Because all four of your kids are adopted,

how much warning did you have about the

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likelihood of them being neurodiverse,

especially knowing that they were all

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young when they came into your family?

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You know, I mean, it...

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It seems like adopting older kids you tend

to get more warning.

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But...

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Even with older kids, we sometimes

minimize the potential.

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I mean, I think the reality is adoption is

trauma, right?

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And so whether or not a child is adopted

at one day old or a year old or five years

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old, the fact that they are going through

an adoption journey means that they've

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experienced a trauma and will continue to

experience that trauma for the rest of

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their lives.

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It doesn't mean that trauma always has to

be traumatizing.

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It does though mean that the reality is

they will always be adopted and that will

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have impact in different parts of their

lives.

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So I think, you know, I think as an

adoption community, and it may be

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different in different, you know,

different provinces, different countries.

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As an adoption community, I think we're

working hard to be more upfront and honest

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about the fact that we often don't really

know about kids' beginnings, right,

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there's often huge gaps.

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And some of that can be minimized with

people taking, you know, more knowledge

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and thought about how to document things

and keep track of things.

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But some of those things aren't known,

right?

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Like if, for example,

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the child comes into care at the age of

five or seven or eight, there might be

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years and years and years of experience

that we don't know about, especially in

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including prenatal experiences, right?

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So when we're talking about FASD, which is

a particular interest in area of expertise

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for me, although I use the word expertise

in a very light way because I don't

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consider myself an expert at all.

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When I say expertise, it's that place of

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of curiosity and passion about

enlightening the world about the realities

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of fetal alcohol spectrum disorder and the

way that we can absolutely change

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trajectories if we clue in quicker

sometimes.

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And if we, you know.

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And if we have some of these honest

conversations and look at some of the

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barriers that make it difficult to be able

to have some of these conversations.

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So I think for our kids, we got as much

information as was known, but I think

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there was much more information that could

have been known.

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And there were, you know, lots more places

where certainly, I mean, we adopted our

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kids

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20 plus years ago, well, 15, 20 years ago.

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And even the concept of adoption being

trauma or the idea of kids, even that idea

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that kids have a life before.

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We often, I think in the adoption

community used to kind of think once kids

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were adopted, it was almost like they had

a new beginning, a new start.

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And I think

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I'm so glad to say we're much more

enlightened about that now and recognize

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that it's one person, one life, one

journey, and that it's about addition, not

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subtraction, right?

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It's not about a new beginning when a

child moves into adoption.

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It's a continuation of a journey.

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And I think we still need to do a lot

better in knowing and sharing and talking

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about the histories of the possibilities

of the realities of.

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the impact of trauma and adoption on

children, youth and adults.

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still my question, isn't it?

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I just added a whole bunch of questions in

here.

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So now none of my questions make any sense

in the order they're in.

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That sounds like my life.

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Well, I feel like I'm gonna move one of

these questions up and see if that helps

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things.

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So, as someone who...my own neurodiversity

was diagnosed at the age of 40, and

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realistically it's been a part of who I am

forever.

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But, you know, it was one of those doesn't

perform to expectations sort of things.

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crucial parts of who we are as adults, and

especially for women, there's been such an

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explosion in the last few years of people

who are reaching a place where we're

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completely redefining what we know to be

true about ourselves.

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And especially trying to raise children

when you're learning so much about

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yourself at the same time is really

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really strange.

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So I'm wondering what your thoughts are on

that, I guess.

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So I think I have a couple of thoughts as

I hear you speak.

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I think the first one is, I honestly

believe that our children know the truth

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about their identity.

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They know who they are, and oftentimes

adults, systems, et cetera, don't

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recognize that truth or try to convince

them of a different truth.

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And so I think that when adults get

diagnosed,

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you know, as adults with a neurodiversity.

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It's not this thing that comes out of

nowhere.

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It's this recognition of a truth that has

always been but was never honored.

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And it was always trying to be packaged in

a different way, in a way that the adults

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around could.

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explain it or understand it, sometimes

from a limited understanding of what the

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possibilities could be, right?

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So especially, like you said, for girls

and women, the idea of neurodiversity is

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often missed, right?

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Or we come up with other ways of trying to

understand those behaviors and those

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existences.

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I think it...

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I think that's why I'm so passionate about

the fact that I really want us to

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understand and really see kids for who

they are because we have that identity

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formation all the way along, right?

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From the time we're born, we start to

create through all of those different

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child development stages a sense of who

our identity is.

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And if we find out at the age of 15 or the

age of 18 or the age of 20 or 30 or 40 or

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that there's a significant part of our

identity that we didn't know or that

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wasn't acknowledged.

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We have to kind of do some backtracking,

right?

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We kind of have to go through those

identity formation stages again.

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And if you will get to know ourselves from

this new place of truth.

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: 00:21:47

It's a similar journey when, you know, I'm

working with families around the adoption

301

: 00:21:52

piece and they're saying, you know, we

haven't told our kids they're adopted.

302

: 00:21:57

and they may be teenagers, young adults at

this point.

303

: 00:22:01

And my first thing to say to them is

somewhere in your child's sense of who

304

: 00:22:08

they are, they know that they're adopted.

305

: 00:22:12

They have that in their DNA, right?

306

: 00:22:14

And so I guess my long-winded answer is I

always hope that we can...

307

: 00:22:24

help people understand their truth as soon

as possible so that we don't have people

308

: 00:22:30

trying to re-understand themselves, you

know, 20, 30, 40 years into their lives

309

: 00:22:38

with this new lens.

310

: 00:22:40

And I really wanna repeat again that I

don't think the lens is new to them

311

: 00:22:46

necessarily.

312

: 00:22:48

I think it's this way that society or

that...

313

: 00:22:53

the world has been able to translate them.

314

: 00:22:57

I think people know their truth and they

often get silenced in that truth and

315

: 00:23:03

saying no, that's not who you know the

reason you're acting like this is because

316

: 00:23:06

of this and we come up with other

explanations other than the truth.

317

: 00:23:11

And so understanding neurodiversity being

able to you know

318

: 00:23:18

And this comes to one of your other

questions.

319

: 00:23:20

So I'm going to jump to it.

320

: 00:23:21

And sorry for that, that I'm jumping to

your question, but that idea of labels,

321

: 00:23:25

right?

322

: 00:23:28

Labels can be misused and they can be

things that people use to hurt people that

323

: 00:23:34

belongs to the person trying to hurt a

label that helps us understand and honor.

324

: 00:23:41

I want us to create a world where people

feel honor about having a

325

: 00:23:47

you know, ASD or FASD.

326

: 00:23:50

I don't want people to feel and think that

because I have FASD, that means there's

327

: 00:23:56

something wrong with me.

328

: 00:23:59

I want there to be a world where people

say, I have FASD.

329

: 00:24:04

That's so that you can help understand

better how I experience the world.

330

: 00:24:08

So for me, the difficulty with labels

doesn't come with the label.

331

: 00:24:13

And it doesn't come with the fact that

label explains things.

332

: 00:24:17

It comes with the misinformation, the

difficulty, the hatred sometimes of people

333

: 00:24:24

who are using that label.

334

: 00:24:27

Um, and, uh, yeah, so I don't know if I

answered that question.

335

: 00:24:32

I kind of went on a rampage there.

336

: 00:24:34

I hope I answered your question.

337

: 00:24:36

because...

338

: 00:24:37

Sorry, go ahead, Kitty.

339

: 00:24:40

I feel like for some folks it's really

swung in the opposite direction now that

340

: 00:24:46

we see, you know, autism is a superpower

and I am, for example for myself, I am

341

: 00:24:54

very good at my job in large part because

of the way my brain works, but to say it's

342

: 00:24:59

a superpower is also so...

343

: 00:25:02

it's just as reductive as saying that the

way my brain works is a huge problem

344

: 00:25:06

because

345

: 00:25:07

it does make me very good at some things,

but I don't know that I'm gonna call being

346

: 00:25:14

late either 20 minutes early out of

anxiety or late for basically everything

347

: 00:25:22

ever to really be a superpower, you know,

and that it's just as reductive to see it

348

: 00:25:28

in this toxic positivity kind of way.

349

: 00:25:34

But at the same time

350

: 00:25:40

trying not to cure people of something

that is not wrong with them.

351

: 00:25:46

You know, there's nothing wrong with the

way my brain works, it just doesn't always

352

: 00:25:51

work in a way that is the easiest to deal

with the way that society thinks that it

353

: 00:25:58

should be working.

354

: 00:26:01

But...

355

: 00:26:04

it can be a real...

356

: 00:26:07

it's gone so far in the other direction

too that it's, you know, it's such a

357

: 00:26:11

superpower and that doesn't seem to be

something you hear from anyone who is

358

: 00:26:17

neurodiverse it seems to just be a over

acceptance perhaps from other folks

359

: 00:26:28

And I think we see that often, right,

where the pendulum swings from one extreme

360

: 00:26:31

to the other.

361

: 00:26:32

And I think, you know, when we're talking

about spectrums, I think really what we

362

: 00:26:40

really want to do is honor the whole

spectrum, right, and not one extreme to

363

: 00:26:44

the other.

364

: 00:26:45

Bad, good, superpower, deficit, all of

these extremes, I think are meant to,

365

: 00:26:54

they're meant to divide,

366

: 00:26:57

When in reality, I think it's that piece

of we all have brains, all of our brains

367

: 00:27:03

work differently, and that we need to kind

of challenge the social construction that

368

: 00:27:09

we've come up with around valuing some

brains more than others, or some skills

369

: 00:27:14

more than others, and really see

holistically that all brains have values,

370

: 00:27:21

all people have value, and rather than

trying to divide ourselves.

371

: 00:27:26

So.

372

: 00:27:27

Yeah, I think the pendulum does often

swing, you know, we see that in many in

373

: 00:27:32

many cases And I'm not sure pendulum

swings to either extreme or helpful

374

: 00:27:38

I wonder too how much of that comes from

medicalizing neurodiversity that it's...

375

: 00:27:46

You know, I mean, if you're diabetic,

basically you are diabetic or you're not

376

: 00:27:51

diabetic.

377

: 00:27:51

Like, there's not a lot of spectrum in

there.

378

: 00:27:55

Or you have cancer, you don't have cancer.

379

: 00:27:58

That's a pretty, like, this or that thing

where...

380

: 00:28:03

being neurodiverse is a huge range of all

sorts of things and no two people are

381

: 00:28:10

neurodiverse in the same way, where two

people can be diabetic in more or less the

382

: 00:28:16

same way.

383

: 00:28:17

And so I wonder how much of it is just

that medicine is not a great approach for

384

: 00:28:26

the basics of how brains work.

385

: 00:28:31

from a healthy brain standpoint, I guess.

386

: 00:28:35

And now I'm just totally off, totally off

into...

387

: 00:28:40

Oh well, people know to expect it by now.

388

: 00:28:44

If this is the first episode you've

listened to, apologies, this is basically

389

: 00:28:47

what it's like.

390

: 00:28:48

So now I'm gonna let Arlene ask her

questions so that we can get back on

391

: 00:28:51

track.

392

: 00:28:56

So we've already been talking about labels

and Katie, I don't think you're off base.

393

: 00:29:01

I get where you're coming from.

394

: 00:29:02

So I know that I've heard some people say

they don't wanna label their kids and I

395

: 00:29:06

really love what you're saying about

people knowing who they are, whether or

396

: 00:29:10

not they've gotten that news or diagnosis

or all of the context that they need.

397

: 00:29:17

they understand themselves, but maybe

can't always explain it to other people or

398

: 00:29:22

it doesn't maybe make sense for them in

society potentially, or like you said, the

399

: 00:29:28

way the world sometimes works.

400

: 00:29:30

So some people say they don't wanna seek

diagnosis because then their kid will get

401

: 00:29:35

labeled in that negative sense, right?

402

: 00:29:37

And so they might be concerned that

seeking diagnosis means that they're

403

: 00:29:42

actually limiting their child.

404

: 00:29:44

And I was wondering what your thoughts

were

405

: 00:29:48

testing, diagnosis, that kind of stuff, or

if you feel like your child has some

406

: 00:29:54

differences that maybe you don't

understand and are starting the process of

407

: 00:29:58

looking for support, like where do you

even start and what do you feel has value

408

: 00:30:04

in that process?

409

: 00:30:05

Like how can parents seek the support that

they need, both as parents and for their

410

: 00:30:11

kids to learn how to understand themselves

better?

411

: 00:30:19

So I think that the concept of labels

comes, and it kind of comes back to that

412

: 00:30:24

medicalization piece, where we need the

label to access the service, or most

413

: 00:30:28

services.

414

: 00:30:29

Although I think services are getting

better at not needing labels.

415

: 00:30:36

And I think that it still comes back to

that place of the label itself is not the

416

: 00:30:44

problem.

417

: 00:30:46

in my opinion.

418

: 00:30:46

In my opinion, it is the baggage that

comes along with some of those labels and

419

: 00:30:52

the assumptions and the, you know, the

discourse that comes with some of those

420

: 00:30:57

pieces.

421

: 00:31:00

And I think what we really want is for

children, youth and adults for that matter

422

: 00:31:05

to feel a sense of pride and a sense of

wholeness in who they are.

423

: 00:31:13

So I think, I do think it's individual.

424

: 00:31:16

I think, you know, different kids have

different needs and expectations about

425

: 00:31:20

that.

426

: 00:31:20

Some kids, it really helps them to have

meaning, if you will, externalized

427

: 00:31:27

meaning, to make sense of their behaviors

or their needs, or, you know, why, for

428

: 00:31:32

example, you know, for one of my kids,

they could never walk into a birthday

429

: 00:31:38

party if it had already started.

430

: 00:31:41

They needed to be there first.

431

: 00:31:43

They needed to kind of get grounded.

432

: 00:31:46

They needed to kind of get a sense of the

space before, if you will, all hell broke

433

: 00:31:50

loose, right?

434

: 00:31:51

And the sensory input and the sounds and

the people and the movement and the, and

435

: 00:31:59

when we were able to put meaning to that,

and we put meaning to it from a place of

436

: 00:32:05

saying, this is just how your brain works,

right?

437

: 00:32:08

Your brain needs to

438

: 00:32:10

feel a sense of peace and anchoring in a

new space before you then have to interact

439

: 00:32:18

with tons of other people.

440

: 00:32:20

Your brain just likes a chance to, you

know, kind of chill for a little bit.

441

: 00:32:26

And for you to walk into a room that's

already all happening, your brain then

442

: 00:32:31

doesn't get the chance it needs to settle

to then be the best that it can be.

443

: 00:32:37

So.

444

: 00:32:38

Being able to provide meaning to that,

whether or not we use the label or not, I

445

: 00:32:44

think it's the meaning making that makes

the difference.

446

: 00:32:47

I think the labels, unfortunately,

fortunately, I think there's a debate on

447

: 00:32:54

both sides, the labels are what help us

access the services, right?

448

: 00:32:58

So they help us access the funding.

449

: 00:33:00

They help us access, you know, whether

it's respite services or speech services

450

: 00:33:05

or without the label.

451

: 00:33:08

you're not going to easily access some of

those funding services or even services in

452

: 00:33:13

the education system right around like in

the Ontario system that IEP IPRC process

453

: 00:33:19

of being able to be noted with, you know,

having exceptionalities, which is a word I

454

: 00:33:26

have a problem with as well.

455

: 00:33:28

I think, you know, realistically, and not

that I have the power to change the

456

: 00:33:33

system, but if I did.

457

: 00:33:35

I would love every student to have an IEP.

458

: 00:33:39

I would love the IEP process to be a

process attached to student wellness and

459

: 00:33:45

student learning and success for every

student, not just students who are seen as

460

: 00:33:51

having exceptionalities.

461

: 00:33:53

So that's why I continue to do the

advocacy work I do so that I can change

462

: 00:33:58

the system so that every child can get an

IEP.

463

: 00:34:02

Until then, you know.

464

: 00:34:05

having those labels per se, those

diagnoses, make the journey easier to get

465

: 00:34:11

some of those things that make the playing

field equal.

466

: 00:34:20

So, you know, for, like I said, for one of

my kids, where sensory issues are really

467

: 00:34:27

significant,

468

: 00:34:29

for them to walk into a classroom of 30

kids is huge for them.

469

: 00:34:34

It takes so much energy.

470

: 00:34:36

And the child beside them, whose brain

doesn't work like that, they don't have to

471

: 00:34:40

use any of their brain power to walk into

that classroom, right?

472

: 00:34:45

It doesn't mean that child's brain is

better than this child's brain.

473

: 00:34:49

It means we have two brains who process

environment and information differently.

474

: 00:34:53

That's all it means.

475

: 00:34:55

And because the environment

476

: 00:34:57

that we're asking a child to be in is a

room full of 30 other people, we need to

477

: 00:35:04

adapt that environment for that brain to

work.

478

: 00:35:07

If the environment that we constructed is

a room with three other people.

479

: 00:35:13

we wouldn't need to adapt the environment

for the brain, right?

480

: 00:35:16

So it all comes down to the fact that it's

not about individual people's brains and

481

: 00:35:22

their neurodiversity per se, it's about

the systems and the way we've created

482

: 00:35:27

environments that adaptations need to be

made because of the way that the systems

483

: 00:35:32

are there.

484

: 00:35:32

So the labels help access service, they

help with the advocacy, they help with the

485

: 00:35:40

shared language sometimes.

486

: 00:35:43

Um, there's still room for people, you

know, as you said earlier, right?

487

: 00:35:49

Not one person with neurodiversity

presents in the same way.

488

: 00:35:52

Neurodiversity is neurodiverse, diverse,

right?

489

: 00:35:57

And so a label of ASD or a label of FASD

gives you, you know, a sense of a, of a

490

: 00:36:06

community of realities.

491

: 00:36:08

It does not tell you.

492

: 00:36:10

who child A is because they have FASD.

493

: 00:36:14

It gives you a sense of child A may have,

you know, a menu of 500 different

494

: 00:36:22

realities from child B and you as the

adult in that system, whether you are the

495

: 00:36:28

parent, the teacher, the coach, the

doctor, need to then step up.

496

: 00:36:36

and be able to be curious about what does

FASD look like for this particular child

497

: 00:36:43

right now.

498

: 00:36:45

And know enough about neurodiversity to

know that doesn't mean that might not be

499

: 00:36:51

who that child presents and is tomorrow

based on, you know, the environment, based

500

: 00:36:58

on how well they slept last night, based

on, you know, if they have some trauma

501

: 00:37:02

triggers about something, right?

502

: 00:37:05

So I think the labels help to cue or

should help to cue other people that

503

: 00:37:14

there's a need for curiosity from a place

of kindness and care, not curiosity from a

504

: 00:37:21

place of hatred or gawking or like that

negative curiosity, but a place of

505

: 00:37:30

curiosity be able to say

506

: 00:37:33

I need to really, I need to work hard to

know who you are, not because of the

507

: 00:37:38

label, but I need to work hard to know who

you are because you're another human being

508

: 00:37:42

and I should be doing that with everybody.

509

: 00:37:44

The label just helps me to cue that I need

to do this a little differently possibly.

510

: 00:37:50

Karen, I love that idea of all children

having IEPs or even all people just having

511

: 00:37:59

some sort of individual human program

where we would just have this because kids

512

: 00:38:08

can be a pain in the ass.

513

: 00:38:09

All humans can be a pain in the ass.

514

: 00:38:11

That's just the way they are.

515

: 00:38:13

But if it gives somebody a heads up that

maybe my kid or myself has...

516

: 00:38:19

a reason for being difficult that isn't

just that there are pain in the ass, that

517

: 00:38:25

maybe that clock ticking is legitimately

impacting whether my kid can listen to

518

: 00:38:31

something, or whether I myself can listen

to something, and how much that is

519

: 00:38:39

informed by what we're interacting with.

520

: 00:38:43

I work in software.

521

: 00:38:45

Probably half of my coworkers are

neurodiverse if we really got down to it.

522

: 00:38:50

I work remotely.

523

: 00:38:53

For me, having a diagnosis of every part

of how my brain works really doesn't

524

: 00:38:59

matter because I'm in control of my own

life and nobody cares.

525

: 00:39:04

But for my five-year-old, you know, where

the risk of them being labeled is

526

: 00:39:10

difficult or non-compliant or doesn't work

up to expectations or whatever else can be

527

: 00:39:19

very different But I'm wondering as in

your diverse adult How do I know if my kid

528

: 00:39:28

needs?

529

: 00:39:31

more exploration of how their brain works

or if they're just weird?

530

: 00:39:38

Does that make sense?

531

: 00:39:40

My one kid is very focused on their

interests and does not like loud noises

532

: 00:39:46

and does not like flashing lights and all

this, but how do I know if this is...

533

: 00:39:52

something that needs more understanding

and support or if I just say, yeah, my kid

534

: 00:39:58

doesn't like loud noises.

535

: 00:39:59

And does it matter one way or the other, I

guess.

536

: 00:40:04

I think it's a great question and I think

it's a question that parents ask

537

: 00:40:07

themselves all the time, right, around do

we need to go further with this?

538

: 00:40:12

Do we need to get some help with this?

539

: 00:40:14

Do we not need to?

540

: 00:40:16

And I think there's no right answer, but I

think the place where I land on this often

541

: 00:40:21

is a place of are these pieces of them

interacting in their ability to lead the

542

: 00:40:29

best life they can lead?

543

: 00:40:32

And if they are...

544

: 00:40:34

then I lean to the point of maybe we need

to get some more information here to see

545

: 00:40:38

if we can minimize the difficulty this is

having on their lives.

546

: 00:40:44

If it's not, then I'm like, I got no

problem here to solve, right?

547

: 00:40:48

Like, yeah, loud noises really bother

them, okay?

548

: 00:40:54

And, you know, I personally don't like

549

: 00:41:03

I'm not saying it to minimize the impact

of the loud noises.

550

: 00:41:06

I'm saying it as a way of saying that we

all have things that we don't like, that

551

: 00:41:13

are difficult, and we need to make some

decisions about whether those difficulties

552

: 00:41:18

impact our life to a point where they're

affecting our ability to live our best

553

: 00:41:23

lives, beyond our ability to problem solve

it.

554

: 00:41:28

So I will use my ridiculous example of not

liking corn.

555

: 00:41:33

to, you know, I can use my skills to

manage that, right?

556

: 00:41:37

In a restaurant, I don't order corn.

557

: 00:41:39

I don't buy it at the grocery store.

558

: 00:41:41

If I'm at a friend's house and they serve

it, I eat what else is on the plate.

559

: 00:41:45

I can use my skillset.

560

: 00:41:48

I can use the ability I have to problem

solve to minimize that need, that impact

561

: 00:41:56

on my life, right?

562

: 00:41:58

If...

563

: 00:41:59

you know, my friend, you know, were to say

to me, every time I serve you food, you

564

: 00:42:04

don't eat it.

565

: 00:42:04

And it's really upsetting me.

566

: 00:42:06

And, you know, I'm taking it personally.

567

: 00:42:09

And I don't think you're a very good

friend.

568

: 00:42:12

And I don't know how to problem solve that

and manage that and have that conversation

569

: 00:42:16

with her to say it's not about your

cooking.

570

: 00:42:18

It's that I don't like corn.

571

: 00:42:21

Then maybe

572

: 00:42:22

I need to be looking at how I can come up

with some different strategies, some

573

: 00:42:26

different ways of doing it, because it is

impacting my life.

574

: 00:42:29

That analogy of the corn was really bad,

but it, I went with it because I started

575

: 00:42:34

and I couldn't stop, but it really is, you

know, does, does the need outweigh the

576

: 00:42:42

ability to feel like you're living your

best life and you can't use the skills or

577

: 00:42:47

the resources that you have to mitigate

any negative impact.

578

: 00:42:52

that it may have.

579

: 00:42:53

think that's a really good analogy

honestly as someone who, and I

580

: 00:42:58

legitimately know that this has come to a

shock to a number of people who know my

581

: 00:43:03

daughter now.

582

: 00:43:06

When she was about two and a half, I

pushed hard for early intervention for

583

: 00:43:10

speech services because she had five

words.

584

: 00:43:13

Mm.

585

: 00:43:13

and she was so frustrated and so angry and

the rest of the family was so frustrated

586

: 00:43:19

and so angry because she had so much to

communicate and no skills to do so and

587

: 00:43:25

that was a huge problem and I ran into her

speech therapist recently and asked if

588

: 00:43:32

perhaps there was some sort of money-back

guarantee because she now literally talks

589

: 00:43:37

in her sleep, talks all the time, never

590

: 00:43:42

She's using all of those words.

591

: 00:43:44

of frustration...

592

: 00:43:47

Oh yes, at length and repeatedly.

593

: 00:43:49

I don't know how in our family.

594

: 00:43:51

I mean, nobody else is talkative at all.

595

: 00:43:55

But then looking at our son, who is quite

bothered by loud noises, but it has to be

596

: 00:44:03

really loud before it's a problem.

597

: 00:44:05

So maybe it's just that he doesn't like

loud noises.

598

: 00:44:08

And if it's not...

599

: 00:44:10

really impacting his day-to-day life.

600

: 00:44:12

You know, I mean, not liking corn is not

going to cost you job opportunities

601

: 00:44:18

probably, except like professional corn

eating, I guess.

602

: 00:44:23

You know, it's not probably really

impacting your social life.

603

: 00:44:26

It's not probably really messing with your

head.

604

: 00:44:32

You know, it's not a real problem.

605

: 00:44:37

So you know, if my kid doesn't like loud

noises, but it has to be at...

606

: 00:44:41

took him to the circus this weekend and he

wasn't super stoked about it because it

607

: 00:44:45

was very loud and very flashing lights and

a lot of people, that's not a thing he's

608

: 00:44:52

going to run into on a daily basis.

609

: 00:44:53

So if it's not impacting him on a regular

basis, then hand the kid a pair of

610

: 00:44:58

earplugs and don't worry about it.

611

: 00:45:01

mitigate it.

612

: 00:45:02

Yeah.

613

: 00:45:03

I think, I think that, you know, it can

get to a place though, where, you know,

614

: 00:45:08

the, the not liking corn, if I have a

visceral reaction, right?

615

: 00:45:12

When I see corn on the plate and it causes

me to have anxiety and it causes me to,

616

: 00:45:18

how am I going to manage this?

617

: 00:45:19

I don't know how to manage this.

618

: 00:45:20

I don't know what I'm going to say.

619

: 00:45:21

They're going to be upset with me.

620

: 00:45:23

You know, then corn could be an issue,

right?

621

: 00:45:26

Or

622

: 00:45:27

I avoid going to certain places because

I'm afraid that corn is going to be on the

623

: 00:45:31

menu or I start to look in an obsessive

kind of way at the ingredient list of

624

: 00:45:38

everything to see if corn is, even if it's

illogical that corn would be in the

625

: 00:45:43

ingredient list.

626

: 00:45:44

So I think it can get to that place where

it could be this simple kind of piece that

627

: 00:45:51

then manifests into a difficulty.

628

: 00:45:55

And I guess that's what I'm talking about,

right?

629

: 00:45:57

Is anything can be and anything can't be.

630

: 00:46:01

And I think you need the context and you

need to really be able to balance that

631

: 00:46:08

with the resources that someone has to

mitigate.

632

: 00:46:12

Sorry, I was just gonna say your example

about...

633

: 00:46:14

that today I can manage it.

634

: 00:46:17

Maybe six months from now it becomes a

bigger issue and I need to move into a

635

: 00:46:21

different way of looking at getting some

assessment or getting some intervention.

636

: 00:46:26

the way our house was for a while a child

who maybe has some struggles you can

637

: 00:46:31

manage well at home but then once they

enter the school system it gets to the

638

: 00:46:36

point where they if they can't self

advocate and it's impacting them both

639

: 00:46:42

socially it's impacting their teachers and

their classmates that depending on their

640

: 00:46:46

age and stage there might be resources

that you need now that

641

: 00:46:50

you didn't need six months ago, or that

you won't need six years from now or a

642

: 00:46:54

year from now, but there could be points

along the journey where you do need

643

: 00:46:58

support because there are going to be

things that are unavoidable, or that you

644

: 00:47:03

need them to access those services or do

those particular things that it's beyond

645

: 00:47:08

your ability to mitigate the things that

they can't handle or that they're

646

: 00:47:13

struggling with.

647

: 00:47:15

So that piece of what's okay in some

contexts.

648

: 00:47:21

when things change, then maybe you do have

to seek support or look for services or

649

: 00:47:26

figure out what the underlying issue is

and then see what you can do to help them

650

: 00:47:32

in those specific times or places even.

651

: 00:47:39

Mm-hmm.

652

: 00:47:48

And a lot of times I hear from families

that, you know, kids will hold it together

653

: 00:47:53

at school.

654

: 00:47:54

And when they come home, all hell breaks

loose.

655

: 00:47:56

Like they've held it together all day.

656

: 00:47:59

It's been really hard for them.

657

: 00:48:01

But when you talk to their teachers or

their peer group, it's like, oh no,

658

: 00:48:05

they're doing just fine.

659

: 00:48:07

On the outside, they're doing just fine.

660

: 00:48:09

On the inside, they're working so, so hard

to give the illusion that they're doing

661

: 00:48:14

just fine.

662

: 00:48:15

That when they get home.

663

: 00:48:17

home life for the next hour, two hours,

four hours, six hours is extremely

664

: 00:48:22

difficult.

665

: 00:48:24

And it's hard because the cause of the

distress was something that you don't have

666

: 00:48:30

control over and it's hard for you to

mitigate.

667

: 00:48:32

So you're dealing with the outcome of the

distress, but not necessarily being able

668

: 00:48:39

to change the cause of it.

669

: 00:48:40

So oftentimes I'll have families coming

looking for support.

670

: 00:48:46

and saying, you know, people think I'm

crazy because the teachers say, you know,

671

: 00:48:50

they're doing such a great job.

672

: 00:48:51

And when they go to grandma's house,

they're doing such a great job.

673

: 00:48:54

And when they go to their friend's house,

they're doing such a great job and great

674

: 00:48:58

job.

675

: 00:48:59

And, you know, and the only people who are

seeing the struggles are, you know,

676

: 00:49:05

parents at home.

677

: 00:49:07

And those, the parents are coming and

saying, are we doing something wrong?

678

: 00:49:11

Because how are they holding it together

in all of these other environments?

679

: 00:49:16

But then with us, we're seeing behavior,

we're having outbursts, and oftentimes

680

: 00:49:25

that's the explanation of that is that

home is the safe place for them to be able

681

: 00:49:31

to then expel all of the energy they've

had to hold in, in those places where

682

: 00:49:36

they've had to work really, really hard,

even though they haven't been doing as

683

: 00:49:40

well as it looks like they've been doing.

684

: 00:49:44

I guess the thing I wanted to add to that

as someone who is neurodiverse and dealing

685

: 00:49:51

with that is that the problem doesn't have

to make any sense to anyone else for it to

686

: 00:49:57

be a legitimate problem.

687

: 00:50:00

If corn has become an obsessive issue that

is causing you...

688

: 00:50:08

real problems, it doesn't make any

difference whether I think it's ridiculous

689

: 00:50:13

or not.

690

: 00:50:13

It needs to be treated as a real thing.

691

: 00:50:19

I didn't realize until I was 40 that other

people don't experience things as

692

: 00:50:24

physically painful when they're

bothersome.

693

: 00:50:27

That we're not talking about, you know, oh

I don't really like that light that we're

694

: 00:50:32

talking about, you know.

695

: 00:50:34

physical and emotional actual distress,

and that if something is causing distress,

696

: 00:50:38

it does not matter if it makes any sense

to anyone else.

697

: 00:50:42

You know, that it needs to be treated and

respected in the same way as you would

698

: 00:50:49

presumably, you know, deal with a physical

injury to your child.

699

: 00:50:55

That if it is causing them distress, you

would deal with it, because that's what we

700

: 00:50:58

do.

701

: 00:51:01

And sometimes it's even, even the person

themselves can't put meaning to it, they

702

: 00:51:05

just know, right?

703

: 00:51:07

And so sometimes we get caught in this

cycle of trying to have them explain, tell

704

: 00:51:13

me what's going on.

705

: 00:51:14

What's it, and they can't put words

through it, all they can say, ah, right?

706

: 00:51:19

Like it's just this, it's just yuck, and I

can't tell you why, and I can't put

707

: 00:51:25

meaning to it, and I can't make this a

cognitive process.

708

: 00:51:29

I can just tell you that this really, this

causes me pain or discomfort or it just

709

: 00:51:34

feels horrendous and oftentimes we're

looking for meaning so that we can try and

710

: 00:51:42

come up with solutions when sometimes what

we just need to do is bear witness to it

711

: 00:51:48

and be there and have empathy and really

help to be in relationship at the time to

712

: 00:51:54

help somebody work it through because

it's...

713

: 00:51:57

that discomforting and it's just really

hard and that's what they need at the

714

: 00:52:02

time.

715

: 00:52:03

So sometimes the answers aren't there and

we have to be okay with that.

716

: 00:52:09

I think that's such a great point because

I think, you know, somebody breaks a bone,

717

: 00:52:14

we don't expect them to explain to us what

pain is.

718

: 00:52:18

And there's things that are universally

bothersome and distracting to such a

719

: 00:52:24

degree.

720

: 00:52:24

I don't know anyone who wouldn't be

distracted by mosquitoes in their ears or

721

: 00:52:31

a fire alarm randomly going off.

722

: 00:52:33

You know, it's pretty expected that those

things are bothersome.

723

: 00:52:40

And we don't expect people to justify

being bothered by those things, or justify

724

: 00:52:46

being in physical pain.

725

: 00:52:48

And, you know, I think we can just

understand that we don't have to

726

: 00:52:56

understand what is causing a problem.

727

: 00:52:58

You know, we can just deal with the

results of it.

728

: 00:53:03

the services don't always exist that we

might need or we're sometimes more

729

: 00:53:09

interconnected than other people.

730

: 00:53:11

We kind of have to live in community and I

mean, we get to live in community, but how

731

: 00:53:17

can we support other families and other

parents adapt and be supportive?

732

: 00:53:24

a lot of, especially with people who are

still trying to, in our communities, who

733

: 00:53:29

are, who might be struggling, because

we're talking about a lot of the positive

734

: 00:53:33

aspects and being able to figure out

what's going on in their families.

735

: 00:53:37

They can go through times where they are

really struggling and feel, maybe feel

736

: 00:53:42

judged or can't access the services that

they need and are then feeling really

737

: 00:53:48

alone.

738

: 00:53:48

So how can we be more supportive in our

communities of people who are struggling?

739

: 00:54:06

I feel like that's a pretty loaded

question because there's so many layers

740

: 00:54:10

there.

741

: 00:54:11

Because you're right, there's not enough

service and the service that there is,

742

: 00:54:15

there's often a wait list and you know,

like there's lots of barriers sometimes to

743

: 00:54:20

accessing service.

744

: 00:54:21

I think some of what we can do is we can

look to kind of non-traditional places to

745

: 00:54:27

provide support, right?

746

: 00:54:29

So I think about, you know...

747

: 00:54:31

the parent in the grocery store with the

child who is having a meltdown about

748

: 00:54:37

something.

749

: 00:54:38

And I think about how much difference we

might be able to make as we walk by them

750

: 00:54:44

if we just say to them something like, I

see you and you're doing a good job.

751

: 00:54:48

And we just keep walking, right?

752

: 00:54:51

Because I don't know about you, but I've

certainly had the experience more times

753

: 00:54:57

than I want to remember.

754

: 00:54:59

of having to try and manage and mitigate,

you know, difficult behavior in front of

755

: 00:55:05

other people.

756

: 00:55:07

And one of the first places I go as a

parent, as a member of the community is

757

: 00:55:12

shame, right?

758

: 00:55:13

Like I'm embarrassed, I don't, you know,

and I give myself a lot of negative

759

: 00:55:18

self-talk of, oh, you know, and I may not

be necessarily using all of my skills or

760

: 00:55:24

all of the, you know, the things I have

at...

761

: 00:55:27

get to the car and then you can do this

there.

762

: 00:55:29

want it to stop, right?

763

: 00:55:30

Like, you know, please, can we just stop?

764

: 00:55:33

Can we just get to the, you know, like get

me out of here.

765

: 00:55:37

Yeah, yeah, exactly, exactly.

766

: 00:55:41

And you know, I may have, you know, bribed

with chocolate bars, anything to just make

767

: 00:55:45

it stop, right?

768

: 00:55:47

So, and the difference that it could make

when you can just see that knowing look

769

: 00:55:52

from someone that's not judgmental,

because that's your worry.

770

: 00:55:55

right is that people are judging and

thinking you're sometimes somehow doing

771

: 00:56:00

something wrong when all kids have temper

tantrums, all adults have temper tantrums

772

: 00:56:07

for that matter.

773

: 00:56:07

Like, let's be honest here, all human

beings do.

774

: 00:56:10

And so why do we not see that we have such

power as community to just give that pat

775

: 00:56:19

on the back or that you got this mom or,

you know, the statement of, you know,

776

: 00:56:25

you know, way to go dad, you're working

hard, or even just a look, right?

777

: 00:56:29

An eye to eye contact that says you're not

alone, right?

778

: 00:56:32

I think we can do those sorts of things.

779

: 00:56:34

I think we can think about ways that, you

know, we can encourage connection in our

780

: 00:56:44

community, right?

781

: 00:56:45

So some of the initiatives around, you

know, the benches on the schoolyard so

782

: 00:56:49

that kids can, if they're feeling alone,

they can.

783

: 00:56:52

sit on the bench and not in a way of

feeling excluded, but in a way of

784

: 00:56:57

normalizing to say, I'm feeling alone and

I would like a friend.

785

: 00:57:02

And it's not a shameful journey.

786

: 00:57:04

And it's not a journey of, oh, let's feel

sorry for that child.

787

: 00:57:07

It's a journey of, it's okay to express a

need and for that need to be acknowledged

788

: 00:57:14

as a valuable need.

789

: 00:57:16

And I have, you know, as a kindergarten

age kid, I have the power

790

: 00:57:22

to change that trajectory for that friend

of mine today.

791

: 00:57:26

They're lonely and I have the ability to

play with them, right?

792

: 00:57:30

So I think being able to do those sorts of

things, I think being able to ensure that

793

: 00:57:35

we have information available in ways that

people can access it.

794

: 00:57:40

They used to work in the violence against

women community and we would often leave

795

: 00:57:46

information taped to the back of the

bathroom stall doors.

796

: 00:57:50

so that people can read it in a way that

they don't necessarily feel.

797

: 00:57:55

Because there can be, people can feel

embarrassed or shameful, and they

798

: 00:58:00

shouldn't.

799

: 00:58:01

They shouldn't have to feel that, but they

do because of some of the structures that

800

: 00:58:05

are still in place.

801

: 00:58:06

So, especially in rural and small

communities, you may not wanna ask your

802

: 00:58:11

neighbor for help because your neighbor is

also the person, your life is well

803

: 00:58:17

intertwined with each other.

804

: 00:58:19

right?

805

: 00:58:19

And so if you want to have some of that

privacy, thinking about ways that we can

806

: 00:58:25

provide information that's accessible, but

private at the same time.

807

: 00:58:30

You know, I think also one of the one of

the groups that I'm a part of is the rural

808

: 00:58:37

FASD network.

809

: 00:58:38

And it was it's a network that's been

started by parents.

810

: 00:58:43

And it came from a place of saying, we

don't have what we need.

811

: 00:58:48

for our kids and for us, and the agencies

aren't doing it, we're gonna do it.

812

: 00:58:54

And it's one of the most amazing sources

of information and support and empowerment

813

: 00:59:03

that I know as a professional and as a

parent.

814

: 00:59:07

So thinking about how can I make the

difference in someone else's life?

815

: 00:59:12

Maybe, for example, I don't have a child

with Down syndrome.

816

: 00:59:16

What could I do?

817

: 00:59:17

that could make a difference for a family

in the community that does have a child

818

: 00:59:21

with Down syndrome.

819

: 00:59:22

I don't have to walk the journey to be

able to use my individual power in the

820

: 00:59:27

community to make a difference for others.

821

: 00:59:29

So having awareness, thinking about

opportunities that I can have to make a

822

: 00:59:35

difference, and recognizing that no effort

is too small, right?

823

: 00:59:40

Because if 20 of us do a really small

thing,

824

: 00:59:44

it can make a huge difference.

825

: 00:59:46

And like I said, even those looks in the

grocery store, even those at the community

826

: 00:59:56

meeting, if you know that a parent is

really struggling going up to them and

827

: 01:00:01

saying, you know what, you're doing a

great job.

828

: 01:00:04

I just want you to know you're doing a

great job.

829

: 01:00:05

Or I just want you to know I notice you

and I notice you in a really, in a

830

: 01:00:09

positive way.

831

: 01:00:11

You know, being able to do those little

acts of kindness to be able to help people

832

: 01:00:17

feel like they belong and they belong in a

way that isn't shameful or isn't something

833

: 01:00:24

that they need to be worried about, I

think can make a huge difference while

834

: 01:00:28

we're still working hard to advocate for a

system and social change, right?

835

: 01:00:33

I mean, we have to do that big piece as

well.

836

: 01:00:37

But those individual interactions

relationally can make a huge difference in

837

: 01:00:41

the journey of a parent who is his

parenting a child who is making, sometimes

838

: 01:00:46

makes the journey hard.

839

: 01:00:48

Sometimes it's exhausting.

840

: 01:00:49

Sometimes you feel like you're all alone

and you're doing it all wrong.

841

: 01:00:54

And having the person in front of you, Tim

Horton's buying you a coffee, they have no

842

: 01:01:00

idea.

843

: 01:01:02

much difference they just made in your

life.

844

: 01:01:04

Like you can do simple things like that

too if you have the economic means to do

845

: 01:01:08

that or you know those simple things can

make a huge difference.

846

: 01:01:13

Like I said while we're still trying to

change the world.

847

: 01:01:15

with them for years.

848

: 01:01:17

And to that one person, that did mean the

world, right?

849

: 01:01:20

So that's really important to remember.

850

: 01:01:24

I know as our children grow up, the ways

that, you know, kind of the educational

851

: 01:01:30

system or social systems interact with our

kids.

852

: 01:01:35

change, you know, as they get older, I

know you have teens and adults, so you

853

: 01:01:39

know what I'm talking about.

854

: 01:01:40

So I'm wondering if you have any insight

for those of us who are parenting older

855

: 01:01:44

children who are neurodiverse, both in

kind of helping them self-advocate and yet

856

: 01:01:49

still being involved enough to support

them in those times where they can't

857

: 01:01:55

really self-advocate or haven't learned

those skills quite yet.

858

: 01:02:13

Yeah, I think for me, once again, it's a

recognition, first of all, that we're

859

: 01:02:19

working in and working with a system that

is not what it should be.

860

: 01:02:26

Um, because if, if it was the system that

it should be, then we shouldn't have to

861

: 01:02:32

advocate.

862

: 01:02:33

So that's kind of my, my baseline, right?

863

: 01:02:36

Anytime I have to advocate for something

tells me that there's a lacking in the

864

: 01:02:40

system.

865

: 01:02:40

And that's not a blame of the system.

866

: 01:02:42

I mean, the system has been created, you

know, for eons and we make changes and we

867

: 01:02:48

make adaptations, but systems are slow to

change, right?

868

: 01:02:51

And systems tend to work better.

869

: 01:02:55

when they kind of look at, you know, kind

of the collective, you know, the

870

: 01:03:00

collective mass of the majority of people

would work well with this, right?

871

: 01:03:04

So anybody who's on either end of the

extremes of that majority, the system

872

: 01:03:08

doesn't work the best for.

873

: 01:03:10

So I think we have to acknowledge, first

of all, that we're working in an imperfect

874

: 01:03:15

system.

875

: 01:03:17

And that's not meaning that there's

anything wrong with our child.

876

: 01:03:21

And it doesn't mean there's anything wrong

with their parenting.

877

: 01:03:23

assume that not, yeah.

878

: 01:03:25

there's anything wrong with what we are

doing per se.

879

: 01:03:28

Maybe, maybe you are doing something

wrong, but it's not the default, right?

880

: 01:03:34

And that's, yeah, yeah.

881

: 01:03:39

And that sometimes it's not because our

kids can't advocate for themselves, it's

882

: 01:03:47

that they can't advocate for themselves in

an imperfect system.

883

: 01:03:53

And so there are times where we may need

to continue to do that role, not because

884

: 01:04:00

of a lacking in them, but because the

system is not set up for them to be able

885

: 01:04:07

to use those skills in a successful way.

886

: 01:04:10

And I'm also, I'm always looking at that

kind of loss gain kind of, you know,

887

: 01:04:17

analysis of how much is this going to

888

: 01:04:21

cost for us to get this outcome.

889

: 01:04:26

So yes, maybe they can self advocate and

continue to work and continue to do, but

890

: 01:04:34

the cost of that is too big compared to

what we're gonna gain from them doing that

891

: 01:04:40

piece.

892

: 01:04:41

And so I'm often having those

conversations with myself in the mirror,

893

: 01:04:47

with my partner, with my kids, like which

battles are we gonna fight here?

894

: 01:04:51

right?

895

: 01:04:54

And I come back to that piece of is this

going to matter a year from now?

896

: 01:04:59

If it's not going to matter a year from

now, why am I making a big deal of it?

897

: 01:05:04

Are they learning some skills or gaining

some things that they can't get any other

898

: 01:05:09

way?

899

: 01:05:09

Then it might be worth it.

900

: 01:05:12

Could they gain these skills or gain this

information in other environments that

901

: 01:05:16

would be less difficult, less challenging,

maybe less affecting of their sense of

902

: 01:05:22

self?

903

: 01:05:23

Maybe then I'm not going to, you know, I'm

not going to walk this walk.

904

: 01:05:28

Is this going to affect my relationship

with them?

905

: 01:05:33

And if it's going to affect my

relationship with them in a negative way,

906

: 01:05:36

are there things I can do to make amends

for that?

907

: 01:05:40

Or

908

: 01:05:41

If not, I really have to ask myself if

it's worth it.

909

: 01:05:45

It always comes back to that relational

piece, right?

910

: 01:05:48

And what's the gain here and what's the

potential loss?

911

: 01:05:54

I think that helping systems to remember

our kids holistically, so I advocate often

912

: 01:06:07

with systems for them to remember.

913

: 01:06:10

not just the things that my child may need

help with or is challenged with, but all

914

: 01:06:15

of the strengths and the wonderful things

they bring as well.

915

: 01:06:19

And when we only have 20 minutes for the

IEP meeting or we only have a small,

916

: 01:06:24

oftentimes we can jump really quickly to

the, okay, what do we need to figure out?

917

: 01:06:27

What are the needs here?

918

: 01:06:28

What are the deficits?

919

: 01:06:29

What are the...

920

: 01:06:30

and I'm like, whoa, whoa.

921

: 01:06:32

That doesn't set a good tone for me.

922

: 01:06:34

It doesn't set a good tone for us.

923

: 01:06:36

If we're going to be deficit or negative

based.

924

: 01:06:40

So, you know, helping to set tone is often

something that I still do.

925

: 01:06:47

I do a lot of advocacy behind the scenes.

926

: 01:06:49

I do a lot of scripting with my kids

around, you know, these are some of the

927

: 01:06:56

things you might want to ask.

928

: 01:06:58

I do a lot of kind of even now there's

times where I attend meetings or I attend

929

: 01:07:06

appointments online.

930

: 01:07:08

through texting, so I'm not in the room,

but I'm there on the text so that if

931

: 01:07:12

there's a question or sometimes I'm just

sending an emoji, right?

932

: 01:07:17

I'm keeping that relational connection

there to say you have all of my power, you

933

: 01:07:24

have all of my connection, you have all of

my knowledge with you in the room, and you

934

: 01:07:31

can access it how and when you need to.

935

: 01:07:35

and there's no shame in wanting or needing

to access it, you're no more successful if

936

: 01:07:41

you access it or if you don't access it,

right?

937

: 01:07:45

The concept of success is if the outcome

is your needs are met in a way that you

938

: 01:07:51

can be the best person that you can be.

939

: 01:07:54

And so trying to change the messaging

about what's a successful

940

: 01:08:01

meeting or successful intervention,

independence did not always mean success.

941

: 01:08:08

I am not always at my best independently

trying to do whatever I'm doing.

942

: 01:08:14

I'm often usually actually at my best and

able to maximize my best self in

943

: 01:08:20

relationship with colleagues who can help

together.

944

: 01:08:24

And so this idea of independent advocacy

or being able to do it on your own.

945

: 01:08:29

those are some great points.

946

: 01:08:30

I mean, I know even as an adult, yeah,

there are times where you go into an

947

: 01:08:35

appointment and you want your partner, a

sibling, a friend to come with you just to

948

: 01:08:40

have, yeah, to have another set of ears or

to remember to ask that question that

949

: 01:08:44

maybe you're not thinking of at the time

or have a podcast co-host, right, Katie?

950

: 01:08:48

Because we're, yeah, we often work better

when we're using other people's skills as

951

: 01:08:55

well as our own.

952

: 01:08:56

That's a good point.

953

: 01:08:57

I wonder too, do you feel like there's any

benefit in talking to your older kids

954

: 01:09:01

about the gaps in the system and saying,

this isn't just about you.

955

: 01:09:05

Like we're facing a system that doesn't

necessarily work for us.

956

: 01:09:11

So we're gonna have to do these things

together.

957

: 01:09:14

And I will help you.

958

: 01:09:16

And this is because of the system, not

because of the way you are as an

959

: 01:09:21

individual, right?

960

: 01:09:32

Absolutely, absolutely.

961

: 01:09:34

And I also talk to my kids a lot about the

fact that the system doesn't just work for

962

: 01:09:39

them, it doesn't work for most of the

kids, right?

963

: 01:09:42

And so, you know, when they're talking

about, you know, a colleague of theirs

964

: 01:09:47

who's struggling, you know, we often have

that conversation of, you know, do you

965

: 01:09:52

think the system's working for them?

966

: 01:09:54

Because what I want is also to make sure

that my kids know that they're not the

967

: 01:09:59

exception here.

968

: 01:10:02

um that most of the systems that we have

are systems that many kids struggle with

969

: 01:10:09

and they struggle with it for lots of

different reasons right so kids who have

970

: 01:10:13

anxiety issues kids who you know are have

gender diversity kids who are you know

971

: 01:10:20

neurodiverse kids who um you know like for

body image needs like there's so many um

972

: 01:10:29

realities of our humanity

973

: 01:10:32

that make our systems make it difficult

for us to be okay with who we are, that I

974

: 01:10:38

would say the majority of humans in

various systems aren't okay with being

975

: 01:10:44

involved in those systems, right?

976

: 01:10:46

And so I actually wanna normalize that,

not just for my kids, but the kids and

977

: 01:10:51

families I have the privilege of working

with that.

978

: 01:10:54

The reality is that most of us are not

okay with these systems.

979

: 01:10:59

You're not the exception because it's not

meeting your need.

980

: 01:11:05

We have to be changing these systems

because they're not meeting many people's

981

: 01:11:10

needs.

982

: 01:11:14

That then creates a community of actually

being...

983

: 01:11:22

a community of recognizing that many of us

aren't getting our needs met in the

984

: 01:11:27

various systems that we're interacting

with.

985

: 01:11:32

Karen, I was just thinking about how

important it is to help our kids start

986

: 01:11:37

learning to advocate for themselves when

they're little, because, you know, little

987

: 01:11:43

kids little problems.

988

: 01:11:44

And as much as it can be a pain in the

ass, and I might wish that my children

989

: 01:11:50

would quit telling me what they want,

because it would be easier to just do what

990

: 01:11:55

I was going to do, there are certainly

times that...

991

: 01:12:01

Taking into account their preferences for

things is a very important way to teach

992

: 01:12:05

them to advocate for themselves.

993

: 01:12:09

And considering that we have the entire

legal profession literally to advocate for

994

: 01:12:17

us when we can't do it ourselves, you

know, asking for help and asking for

995

: 01:12:22

guidance can be really important.

996

: 01:12:26

I'm wondering, as a neurodiverse parent

who struggles a lot with things like

997

: 01:12:31

timeliness and habits and routines and all

those things, how do we raise our kids to

998

: 01:12:40

not learn our habits or to...

999

: 01:12:47

let's just not talk about my kids' chore

charts, okay?

: 1000

01:12:49,732 --> 01:12:51,513

Let's just not.

: 1001

01:12:52,254 --> 01:12:53,474

You know, it's...

: 1002

01:12:54,235 --> 01:12:59,160

It's really hard to teach your kids skills

that you don't have.

: 1003

01:12:59,341 --> 01:13:04,907

And as much as people say, well, you know,

they'll, they'll learn that it's important

: 1004

01:13:04,907 --> 01:13:07,410

to just keep working on it, which is

absolutely true.

: 1005

01:13:07,410 --> 01:13:12,135

There are still things that it would be

better for them to just do, even if it

: 1006

01:13:12,135 --> 01:13:14,137

doesn't come naturally to me.

: 1007

01:13:16,151 --> 01:13:19,035

So how do I make my children be better

people than I am, Karen?

: 1008

01:13:19,035 --> 01:13:22,661

Despite the fact that they are 5 and 6 and

I'm 42 and still can't keep my shit

: 1009

01:13:22,661 --> 01:13:23,762

together.

: 1010

01:13:25,366 --> 01:13:27,208

Help me out here, please.

: 1011

01:13:29,396 --> 01:13:39,224

Well, I actually think the answer is in

the question, which is, I think that first

: 1012

01:13:39,224 --> 01:13:47,131

of all, we want our kids to learn that we

all have areas of growth and areas that we

: 1013

01:13:47,131 --> 01:13:48,151

struggle with.

: 1014

01:13:49,433 --> 01:13:55,977

And we want our kids to learn that it's

not about being able to manage everything.

: 1015

01:13:56,478 --> 01:14:01,600

It's about being able to recognize the

things we can't manage or we don't want

: 1016

01:14:01,600 --> 01:14:07,602

to, because there are also things we just

don't want to, and look at ways to get

: 1017

01:14:07,602 --> 01:14:10,323

that need met in a different way.

: 1018

01:14:10,323 --> 01:14:16,466

Right, and so I think it's about that

concept that, you know, you said earlier

: 1019

01:14:16,466 --> 01:14:20,827

about, you know, wanting kids to learn how

to advocate for themselves early.

: 1020

01:14:20,827 --> 01:14:24,909

I think we also want kids to learn how to

advocate for others, right?

: 1021

01:14:24,909 --> 01:14:26,249

So when they see

: 1022

01:14:26,334 --> 01:14:33,521

and a child who has a need, they can

advocate for their peer as well and see

: 1023

01:14:33,521 --> 01:14:38,325

that they have something to offer to that

person, not just for themselves, but they

: 1024

01:14:38,325 --> 01:14:40,107

can have a gift to give to that person.

: 1025

01:14:40,107 --> 01:14:46,974

So when it comes to things that you as a

parent may not have strength in, I think

: 1026

01:14:46,974 --> 01:14:49,876

we then look to others who do have

strength in it.

: 1027

01:14:50,730 --> 01:14:55,432

I'm always saying to my kids, not so much

now because they're teenagers and they

: 1028

01:14:55,432 --> 01:15:00,214

know I know nothing, but when they were

younger and they still had the belief that

: 1029

01:15:00,214 --> 01:15:06,937

I might actually have some knowledge, and

they would ask me a question or ask for a

: 1030

01:15:06,937 --> 01:15:10,879

skill that I didn't have, I would really

clearly say, you know what, I don't know

: 1031

01:15:10,879 --> 01:15:11,719

the answer to that.

: 1032

01:15:11,719 --> 01:15:13,080

I don't know how to do that.

: 1033

01:15:13,080 --> 01:15:15,140

That's not something I'm good at.

: 1034

01:15:15,281 --> 01:15:17,458

Let's figure out who does know how to do

that.

: 1035

01:15:17,458 --> 01:15:23,643

let's look to somebody who has expertise

or knowledge in that or, you know, the

: 1036

01:15:23,643 --> 01:15:27,706

internet's become a really, I mean, within

reason, right, because you have to be able

: 1037

01:15:27,706 --> 01:15:31,089

to gauge the effectiveness of some of

those internet resources.

: 1038

01:15:31,089 --> 01:15:34,852

But, you know, organization is not one of

my skills.

: 1039

01:15:34,852 --> 01:15:39,375

I'm not neurodiverse, as far as I know,

maybe I am, you know, it's possible.

: 1040

01:15:39,576 --> 01:15:41,517

I'm certainly not organized, though.

: 1041

01:15:41,517 --> 01:15:47,282

And, and so when I'm looking, and I

recognize that my

: 1042

01:15:47,282 --> 01:15:51,425

of organization is not a skill I want to

pass on to my children.

: 1043

01:15:52,106 --> 01:15:56,210

And so I'm looking to if there's other

people in my family who have

: 1044

01:15:56,210 --> 01:16:01,695

organizational skills, if there's places

on the internet where we can look for

: 1045

01:16:01,696 --> 01:16:04,558

strategies and ways to be organized.

: 1046

01:16:04,719 --> 01:16:10,064

I'm always looking for things that are

play and fun based because brains always

: 1047

01:16:10,064 --> 01:16:11,865

do better if it's fun.

: 1048

01:16:12,254 --> 01:16:14,534

or if it's exciting or interesting.

: 1049

01:16:14,534 --> 01:16:17,455

And the definition of fun is always

individualized, right?

: 1050

01:16:17,455 --> 01:16:20,796

What I feel like would be fun may not be

fun for you.

: 1051

01:16:21,256 --> 01:16:27,158

But if our brain is feeling energized and

excited about it, it makes the task

: 1052

01:16:27,158 --> 01:16:28,178

easier.

: 1053

01:16:28,958 --> 01:16:31,039

And I now have experts within my family.

: 1054

01:16:31,039 --> 01:16:37,881

Like one of my kids is brilliant at

organization and cleaning and it didn't

: 1055

01:16:37,881 --> 01:16:38,861

come from me.

: 1056

01:16:38,861 --> 01:16:41,981

There's no ifs, ands, or buts about that.

: 1057

01:16:42,326 --> 01:16:48,268

They've developed those skills with,

because we had a curiosity about how to

: 1058

01:16:48,268 --> 01:16:55,071

develop them, and we looked for resources

and sources outside of ourselves, and they

: 1059

01:16:55,071 --> 01:16:59,713

have now created and have a skill set that

I still don't have.

: 1060

01:17:00,033 --> 01:17:06,276

And so I think it is that idea of

recognizing that you will never have all

: 1061

01:17:06,276 --> 01:17:09,807

of the skills and abilities your kids need

or want.

: 1062

01:17:09,807 --> 01:17:11,884

should probably wrap start.

: 1063

01:17:11,884 --> 01:17:17,091

community or that interest about being

curious about where you can access those

: 1064

01:17:17,091 --> 01:17:18,570

skills can be the answer.

: 1065

01:17:18,570 --> 01:17:23,872

like we've gone in a lot of, to wrap

things up before we go into like another

: 1066

01:17:23,872 --> 01:17:24,772

whole hour of talk.

: 1067

01:17:24,772 --> 01:17:29,814

But I'm hoping that you can share maybe

some of your go-to resources, be it

: 1068

01:17:29,814 --> 01:17:36,057

websites or books or resources that you

think would be helpful to people, either

: 1069

01:17:36,057 --> 01:17:41,019

in the adoption community or in the

neurodiversity community, if you have any

: 1070

01:17:41,099 --> 01:17:45,701

thoughts on things that you find helpful

or maybe refer to your clients or things

: 1071

01:17:45,701 --> 01:17:46,521

like that.

: 1072

01:17:58,478 --> 01:17:59,838

So I have a couple.

: 1073

01:18:00,718 --> 01:18:06,640

The first one is in the adoption

community, and these are Ontario

: 1074

01:18:06,640 --> 01:18:10,201

resources, but they're on the web, so

they're accessible to anybody.

: 1075

01:18:10,201 --> 01:18:15,443

So the first one is the Adoption Council

of Ontario, and I do need to be honest

: 1076

01:18:15,443 --> 01:18:19,564

here that I also do work with them, so

there's a bias there, but I think it's a

: 1077

01:18:19,564 --> 01:18:20,445

fair bias.

: 1078

01:18:20,445 --> 01:18:23,485

I think they're a great organization and a

good resource.

: 1079

01:18:23,598 --> 01:18:30,841

Tons of online information, webinars,

education experiences, lots of free

: 1080

01:18:30,841 --> 01:18:37,563

resources on understanding adoption,

trauma, prenatal exposure, neurodiversity,

: 1081

01:18:37,563 --> 01:18:39,084

tons and tons and tons.

: 1082

01:18:39,084 --> 01:18:40,784

So that's at adoption.on.ca.

: 1083

01:18:43,686 --> 01:18:51,129

For parent support around adoption, Adopt

for Life, so it's adopt, the number four,

: 1084

01:18:51,129 --> 01:18:52,369

life.com.

: 1085

01:18:53,866 --> 01:19:02,233

offering parent support and information,

parent support groups, just really tons of

: 1086

01:19:02,233 --> 01:19:07,398

great information around that support area

around parenting kids who are on

: 1087

01:19:07,398 --> 01:19:09,939

permanency journeys who are adopted.

: 1088

01:19:11,241 --> 01:19:16,245

Another shameless plug for an organization

that's close to my heart is the Rural FASD

: 1089

01:19:16,245 --> 01:19:17,165

Network.

: 1090

01:19:18,270 --> 01:19:22,314

Once again, that's the network I was

talking about that started from a group of

: 1091

01:19:22,314 --> 01:19:28,961

parents around a kitchen table saying, we

need more and created this amazing

: 1092

01:19:28,961 --> 01:19:33,826

resource that has an online presence as

well as an in-person presence.

: 1093

01:19:34,127 --> 01:19:37,089

So a really, really great resource.

: 1094

01:19:38,030 --> 01:19:42,411

And I'll put a plug out there if people

you know want to connect in with me they

: 1095

01:19:42,411 --> 01:19:46,632

have questions They heard something that

I've spoken about on this podcast They

: 1096

01:19:46,632 --> 01:19:54,275

want more info about they can find me at

CP professional services dot CA So CP the

: 1097

01:19:54,275 --> 01:20:01,657

letter CP professional services dot CA And

I'd be happy to you know Expand on things

: 1098

01:20:01,657 --> 01:20:04,578

or give some more info about things

: 1099

01:20:04,578 --> 01:20:07,959

There are tons and tons and tons of

resources.

: 1100

01:20:08,919 --> 01:20:14,722

Most of them will be listed on the

adoption.on.ca and they're not just

: 1101

01:20:14,722 --> 01:20:15,882

adoption resources.

: 1102

01:20:15,882 --> 01:20:22,065

So they're about parenting kids who are

neurodiverse around dealing with trauma,

: 1103

01:20:22,065 --> 01:20:28,167

around talking to kids about difficult

things, tons of resources on that site.

: 1104

01:20:28,167 --> 01:20:33,082

So I think I'll, rather than list off

more, I'll just send people there and...

: 1105

01:20:33,082 --> 01:20:34,371

have it all in one place too.

: 1106

01:20:34,371 --> 01:20:38,122

encourage people to connect in with me if

they have specific needs, and I'll try

: 1107

01:20:38,122 --> 01:20:40,849

hard to direct them to resources.

: 1108

01:20:45,406 --> 01:20:46,068

Yeah.

: 1109

01:20:48,951 --> 01:20:54,494

All right, so Karen, since we're wrapping

up in the interest of this show not being

: 1110

01:20:54,494 --> 01:21:00,257

four hours long, we ask all of our guests

if you were going to dominate a

: 1111

01:21:00,257 --> 01:21:01,898

category...

: 1112

01:21:01,898 --> 01:21:03,158

I'm going to start over.

: 1113

01:21:03,358 --> 01:21:07,701

We ask all of our guests if you were going

to dominate a category at a county fair,

: 1114

01:21:07,701 --> 01:21:08,641

what would it be?

: 1115

01:21:08,641 --> 01:21:11,822

And categories can be real or made up to

ensure that you win.

: 1116

01:21:14,014 --> 01:21:16,256

I was going to dominate a category.

: 1117

01:21:16,256 --> 01:21:20,640

I think for me, and I don't know if this

answers your question properly, but for

: 1118

01:21:20,640 --> 01:21:26,126

me, it would be the person who got to sit

on the merry-go-round the longest, and I

: 1119

01:21:26,126 --> 01:21:32,933

would beat the merry-go-round writing,

longest writing kind of, and I could sit

: 1120

01:21:32,933 --> 01:21:36,098

on it for hours and hours and hours and

not have to leave.

: 1121

01:21:36,098 --> 01:21:39,442

because I could last probably a few

minutes and then start to feel nauseous,

: 1122

01:21:39,442 --> 01:21:41,444

so I would not compete with you at all.

: 1123

01:21:41,444 --> 01:21:45,168

I'd be like, you get that category, for

sure.

: 1124

01:21:46,550 --> 01:21:47,671

Yeah, that's right.

: 1125

01:21:47,932 --> 01:21:49,653

Are you a right person, Katie?

: 1126

01:21:55,186 --> 01:21:56,947

Alright, I win, I win!

: 1127

01:21:58,471 --> 01:21:59,631

I am just...

: 1128

01:22:01,071 --> 01:22:07,453

I love, you know, I'm compiling a list of

ways to tell me you're neurodiverse

: 1129

01:22:07,453 --> 01:22:08,813

without telling me.

: 1130

01:22:09,354 --> 01:22:11,714

I love the Tilt-A-Whirl.

: 1131

01:22:11,774 --> 01:22:16,956

And the girl child also, anything with

that centrifugal force, we are here for

: 1132

01:22:16,956 --> 01:22:17,656

it.

: 1133

01:22:18,656 --> 01:22:22,657

Yeah, weighted blankets, Tilt-A-Whirl, all

of it.

: 1134

01:22:22,717 --> 01:22:23,757

Love it.

: 1135

01:22:23,958 --> 01:22:26,738

Anything upside down.

: 1136

01:22:27,859 --> 01:22:28,439

No.

: 1137

01:22:28,439 --> 01:22:31,600

Hard no on anything up in the air.

: 1138

01:22:31,680 --> 01:22:35,881

But if you want to leave me on the ground

and spin me around in circles, absolutely.

: 1139

01:22:37,182 --> 01:22:40,683

Although I can say that drinking a fair

amount of beer and then getting on the

: 1140

01:22:40,683 --> 01:22:42,524

Gravitron, bad idea.

: 1141

01:22:42,524 --> 01:22:46,065

I'm pretty sure it forces the alcohol

through your liver faster.

: 1142

01:22:46,205 --> 01:22:47,985

Worst hangover I've ever had.

: 1143

01:22:48,266 --> 01:22:50,406

Bad, bad choice.

: 1144

01:22:50,766 --> 01:22:51,384

Yeah.

: 1145

01:22:51,384 --> 01:22:54,307

or send us an email and we will read it

out for you.

: 1146

01:22:54,428 --> 01:22:58,493

Katie, have you got something to cuss and

discuss or cuss or discuss this week?

: 1147

01:23:09,151 --> 01:23:11,632

I do Arlene and it's kind of a two-parter.

: 1148

01:23:11,853 --> 01:23:14,975

One, I really hate when you're...

: 1149

01:23:15,356 --> 01:23:19,719

I don't want to say taken aback, but kind

of surprised and left wrong-footed by

: 1150

01:23:19,719 --> 01:23:24,643

something and so you don't react as fast

as you might want to, and it leaves

: 1151

01:23:24,643 --> 01:23:27,365

someone else with a negative opinion of

you.

: 1152

01:23:27,826 --> 01:23:37,414

And the second part of the same cussing

and discussing is the tremendous lack of

: 1153

01:23:37,414 --> 01:23:37,934

a...

: 1154

01:23:38,955 --> 01:23:48,018

commonly used singular gender neutral way

to refer to other humans.

: 1155

01:23:49,279 --> 01:23:55,962

My daughter was corrected by a server at a

restaurant this weekend as to that

: 1156

01:23:55,962 --> 01:23:59,783

person's preferred pronouns, which is

absolutely fine with me.

: 1157

01:23:59,783 --> 01:24:01,144

I appreciate that they did it.

: 1158

01:24:01,144 --> 01:24:06,886

I really appreciate the level of

vulnerability

: 1159

01:24:07,779 --> 01:24:09,039

put him in.

: 1160

01:24:10,100 --> 01:24:15,944

I feel very, very bad that I did not react

as quickly as I should have to thank him

: 1161

01:24:15,944 --> 01:24:20,587

for correcting us, because I was trying to

think to myself if I had used any gendered

: 1162

01:24:20,587 --> 01:24:26,451

pronouns at all, because I try pretty hard

not to in general, because I think

: 1163

01:24:26,451 --> 01:24:28,672

gendered pronouns are kind of bullshit.

: 1164

01:24:28,893 --> 01:24:36,198

And especially with folks where my first

perception of who I might think they

: 1165

01:24:36,198 --> 01:24:36,878

are...

: 1166

01:24:37,783 --> 01:24:43,587

may or may not match how they identify

themselves, and as I tell our children, we

: 1167

01:24:43,587 --> 01:24:46,509

believe what people tell us about who they

are.

: 1168

01:24:46,849 --> 01:24:51,413

And so, whether it makes sense to us or

not, if they like corn and they don't like

: 1169

01:24:51,413 --> 01:24:56,316

corn, they identify in a way we don't

understand or that we might not

: 1170

01:24:56,316 --> 01:25:00,999

immediately jump to, I'm going to trust

what you say about yourself.

: 1171

01:25:01,360 --> 01:25:05,702

But the fact that there is not

: 1172

01:25:05,847 --> 01:25:11,051

good way to refer to people that is not

gendered in a singular way.

: 1173

01:25:11,051 --> 01:25:18,877

I frequently use y'all to refer to a

group, but there's really not a good

: 1174

01:25:19,278 --> 01:25:22,401

gender-neutral singular pronoun, and there

should be.

: 1175

01:25:22,401 --> 01:25:23,401

Not a pronoun.

: 1176

01:25:24,142 --> 01:25:25,863

A way to refer to other humans.

: 1177

01:25:26,364 --> 01:25:28,906

That doesn't sound like hello, fellow

human!

: 1178

01:25:28,906 --> 01:25:30,127

Who is a human?

: 1179

01:25:30,127 --> 01:25:31,388

Just humaning.

: 1180

01:25:31,809 --> 01:25:32,509

Yes.

: 1181

01:25:32,509 --> 01:25:34,090

Greetings, human!

: 1182

01:25:34,143 --> 01:25:35,704

Maybe I'll just go with that.

: 1183

01:25:36,525 --> 01:25:40,550

Anyway, so if any of our listeners have

suggestions, I really would love to hear

: 1184

01:25:40,550 --> 01:25:42,332

them.

: 1185

01:25:42,332 --> 01:25:44,794

Karen, what would you like to custom

discuss today?

: 1186

01:25:48,091 --> 01:25:58,095

I think for me it is building on what we

talked about earlier and the difficulty of

: 1187

01:25:58,095 --> 01:26:05,498

feeling shame when I or other parents are

doing a damn good job and other people's

: 1188

01:26:05,498 --> 01:26:09,240

reactions make me or them feel like we're

not.

: 1189

01:26:09,240 --> 01:26:15,975

When they have no frigging idea what my

life is like or what we just were doing.

: 1190

01:26:15,975 --> 01:26:21,158

going through 10 minutes ago or a year ago

or how far we've come.

: 1191

01:26:21,879 --> 01:26:27,703

I think that, I think, you know, thinking

about how we can manage that better maybe,

: 1192

01:26:27,703 --> 01:26:35,929

or how that can not matter so much or not

have as much impact, because I think it

: 1193

01:26:35,929 --> 01:26:40,592

really affects a lot of us and it

shouldn't, it shouldn't take that power

: 1194

01:26:40,592 --> 01:26:41,232

away from us.

: 1195

01:26:41,232 --> 01:26:44,176

So I think that would be what I would say.

: 1196

01:26:44,176 --> 01:26:48,417

in terms of systems, there's obviously

lots to improve, but I think especially in

: 1197

01:26:48,417 --> 01:26:55,959

rural places, one area that I know our

family has struggled is in finding

: 1198

01:26:55,959 --> 01:27:01,601

recreational opportunities that work for

our neurodiverse kids.

: 1199

01:27:01,841 --> 01:27:02,418

And

: 1200

01:27:02,418 --> 01:27:06,124

I'm not blaming the people who run the

programs because especially in rural

: 1201

01:27:06,124 --> 01:27:09,990

places it's mostly volunteers and it's

hard to get volunteers at all.

: 1202

01:27:11,666 --> 01:27:16,648

And so, I mean, people end up doing the

things that their kids love or, you know,

: 1203

01:27:16,648 --> 01:27:22,471

that they're running programs that work

for them or that, you know, they're

: 1204

01:27:22,471 --> 01:27:24,872

following a structure that's been set out

for them.

: 1205

01:27:24,872 --> 01:27:26,713

And so that's what's going to work.

: 1206

01:27:26,713 --> 01:27:31,155

And there aren't the same options, you

know, just based on geography and the

: 1207

01:27:31,155 --> 01:27:33,436

number of people who live in the places we

live.

: 1208

01:27:33,436 --> 01:27:38,178

So some of the things that might work

better for our kids that get offered in

: 1209

01:27:38,178 --> 01:27:40,499

urban areas don't end up where we

: 1210

01:27:41,520 --> 01:27:45,472

the things that are here don't always fit.

: 1211

01:27:45,472 --> 01:27:47,517

So then it means that.

: 1212

01:27:48,226 --> 01:27:51,527

that some of our kids miss out, which is

really, really difficult.

: 1213

01:27:51,527 --> 01:27:57,850

And sometimes those of us who see the need

for programs don't have the capacity to

: 1214

01:27:57,850 --> 01:28:00,451

start a thing or run a program.

: 1215

01:28:00,471 --> 01:28:04,573

When you're in the trenches and just

trying to figure things out for your

: 1216

01:28:04,573 --> 01:28:09,716

family to try and start something new

might not be something that you can do

: 1217

01:28:09,716 --> 01:28:10,136

right now.

: 1218

01:28:10,136 --> 01:28:15,558

So I mean, I guess maybe I look 10 years

or maybe five years down the line and

: 1219

01:28:15,558 --> 01:28:18,340

think that's maybe something I could do

something about on a bigger scale.

: 1220

01:28:18,340 --> 01:28:23,153

but right now it's just something I'm

gonna cuss about.

: 1221

01:28:26,698 --> 01:28:31,315

I don't know if you've had similar

experiences, Karen, with that side of

: 1222

01:28:31,658 --> 01:28:32,440

life.

: 1223

01:28:43,731 --> 01:28:49,275

Absolutely, or the, you know, and I get

it, I understand it, but the idea that,

: 1224

01:28:49,275 --> 01:28:57,722

you know, child can participate if parent

attends and that idea of, oh, yes, you

: 1225

01:28:57,722 --> 01:29:04,048

know, okay, I didn't think we were signing

up so that I could also do this, this or

: 1226

01:29:04,048 --> 01:29:04,748

this.

: 1227

01:29:04,748 --> 01:29:11,134

And, but, you know, making it work and,

but sometimes just wishing that I also

: 1228

01:29:11,134 --> 01:29:12,474

could have the hour.

: 1229

01:29:12,551 --> 01:29:15,833

to myself that the other parents are

having.

: 1230

01:29:15,833 --> 01:29:20,537

And yeah, when my kids were younger

sometimes, or the school trips, right?

: 1231

01:29:20,537 --> 01:29:24,940

Where the school trips were, yes, you can

go, your kid can go as long as you go with

: 1232

01:29:24,940 --> 01:29:28,550

them or you send somebody, you know, it's

hard, can be hard.

: 1233

01:29:28,550 --> 01:29:30,553

already gave us where people can find you.

: 1234

01:29:30,553 --> 01:29:32,075

So we're good on that end.

: 1235

01:29:32,075 --> 01:29:35,879

But thank you so much for being with us

and for having this discussion with it.

: 1236

01:29:35,879 --> 01:29:37,561

We both really appreciate it.

: 1237

01:29:48,595 --> 01:29:49,476

My absolute pleasure.

: 1238

01:29:49,476 --> 01:29:51,020

It was a lovely conversation.

: 1239

01:29:51,020 --> 01:29:52,582

Thanks for the opportunity.

: 1240

01:29:52,739 --> 01:29:53,971

Thanks so much, Karen.

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