Episode 5

full
Published on:

27th Oct 2023

Off grid and off script with LSW Karen Moore

This week we've got Karen Moore, who is a licensed social worker specializing in neurodivergence, living off-grid with her family in Eastern Ontario.

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Transcript
Speaker:

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

working with families around the adoption

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piece and they're saying, you know, we

haven't told our kids they're adopted.

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and they may be teenagers, young adults at

this point.

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And my first thing to say to them is

somewhere in your child's sense of who

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they are, they know that they're adopted.

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They have that in their DNA, right?

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And so I guess my long-winded answer is I

always hope that we can...

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help people understand their truth as soon

as possible so that we don't have people

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trying to re-understand themselves, you

know, 20, 30, 40 years into their lives

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with this new lens.

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And I really wanna repeat again that I

don't think the lens is new to them

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necessarily.

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I think it's this way that society or

that...

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the world has been able to translate them.

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I think people know their truth and they

often get silenced in that truth and

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saying no, that's not who you know the

reason you're acting like this is because

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of this and we come up with other

explanations other than the truth.

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And so understanding neurodiversity being

able to you know

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And this comes to one of your other

questions.

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So I'm going to jump to it.

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And sorry for that, that I'm jumping to

your question, but that idea of labels,

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right?

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Labels can be misused and they can be

things that people use to hurt people that

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belongs to the person trying to hurt a

label that helps us understand and honor.

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I want us to create a world where people

feel honor about having a

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you know, ASD or FASD.

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I don't want people to feel and think that

because I have FASD, that means there's

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something wrong with me.

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I want there to be a world where people

say, I have FASD.

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That's so that you can help understand

better how I experience the world.

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So for me, the difficulty with labels

doesn't come with the label.

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And it doesn't come with the fact that

label explains things.

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It comes with the misinformation, the

difficulty, the hatred sometimes of people

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who are using that label.

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

answered that question.

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I kind of went on a rampage there.

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I hope I answered your question.

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because...

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Sorry, go ahead, Kitty.

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I feel like for some folks it's really

swung in the opposite direction now that

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we see, you know, autism is a superpower

and I am, for example for myself, I am

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very good at my job in large part because

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

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a superpower is also so...

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it's just as reductive as saying that the

way my brain works is a huge problem

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because

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it does make me very good at some things,

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

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late either 20 minutes early out of

anxiety or late for basically everything

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ever to really be a superpower, you know,

and that it's just as reductive to see it

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in this toxic positivity kind of way.

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But at the same time

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trying not to cure people of something

that is not wrong with them.

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You know, there's nothing wrong with the

way my brain works, it just doesn't always

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work in a way that is the easiest to deal

with the way that society thinks that it

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should be working.

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But...

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it can be a real...

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it's gone so far in the other direction

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

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:

superpower and that doesn't seem to be

something you hear from anyone who is

358

:

neurodiverse it seems to just be a over

acceptance perhaps from other folks

359

:

And I think we see that often, right,

where the pendulum swings from one extreme

360

:

to the other.

361

:

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

about spectrums, I think really what we

362

:

really want to do is honor the whole

spectrum, right, and not one extreme to

363

:

the other.

364

:

Bad, good, superpower, deficit, all of

these extremes, I think are meant to,

365

:

they're meant to divide,

366

:

When in reality, I think it's that piece

of we all have brains, all of our brains

367

:

work differently, and that we need to kind

of challenge the social construction that

368

:

we've come up with around valuing some

brains more than others, or some skills

369

:

more than others, and really see

holistically that all brains have values,

370

:

all people have value, and rather than

trying to divide ourselves.

371

:

So.

372

:

Yeah, I think the pendulum does often

swing, you know, we see that in many in

373

:

many cases And I'm not sure pendulum

swings to either extreme or helpful

374

:

I wonder too how much of that comes from

medicalizing neurodiversity that it's...

375

:

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

basically you are diabetic or you're not

376

:

diabetic.

377

:

Like, there's not a lot of spectrum in

there.

378

:

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

379

:

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

where...

380

:

being neurodiverse is a huge range of all

sorts of things and no two people are

381

:

neurodiverse in the same way, where two

people can be diabetic in more or less the

382

:

same way.

383

:

And so I wonder how much of it is just

that medicine is not a great approach for

384

:

the basics of how brains work.

385

:

from a healthy brain standpoint, I guess.

386

:

And now I'm just totally off, totally off

into...

387

:

Oh well, people know to expect it by now.

388

:

If this is the first episode you've

listened to, apologies, this is basically

389

:

what it's like.

390

:

So now I'm gonna let Arlene ask her

questions so that we can get back on

391

:

track.

392

:

So we've already been talking about labels

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

393

:

I get where you're coming from.

394

:

So I know that I've heard some people say

they don't wanna label their kids and I

395

:

really love what you're saying about

people knowing who they are, whether or

396

:

not they've gotten that news or diagnosis

or all of the context that they need.

397

:

they understand themselves, but maybe

can't always explain it to other people or

398

:

it doesn't maybe make sense for them in

society potentially, or like you said, the

399

:

way the world sometimes works.

400

:

So some people say they don't wanna seek

diagnosis because then their kid will get

401

:

labeled in that negative sense, right?

402

:

And so they might be concerned that

seeking diagnosis means that they're

403

:

actually limiting their child.

404

:

And I was wondering what your thoughts

were

405

:

testing, diagnosis, that kind of stuff, or

if you feel like your child has some

406

:

differences that maybe you don't

understand and are starting the process of

407

:

looking for support, like where do you

even start and what do you feel has value

408

:

in that process?

409

:

Like how can parents seek the support that

they need, both as parents and for their

410

:

kids to learn how to understand themselves

better?

411

:

So I think that the concept of labels

comes, and it kind of comes back to that

412

:

medicalization piece, where we need the

label to access the service, or most

413

:

services.

414

:

Although I think services are getting

better at not needing labels.

415

:

And I think that it still comes back to

that place of the label itself is not the

416

:

problem.

417

:

in my opinion.

418

:

In my opinion, it is the baggage that

comes along with some of those labels and

419

:

the assumptions and the, you know, the

discourse that comes with some of those

420

:

pieces.

421

:

And I think what we really want is for

children, youth and adults for that matter

422

:

to feel a sense of pride and a sense of

wholeness in who they are.

423

:

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

424

:

I think, you know, different kids have

different needs and expectations about

425

:

that.

426

:

Some kids, it really helps them to have

meaning, if you will, externalized

427

:

meaning, to make sense of their behaviors

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

428

:

example, you know, for one of my kids,

they could never walk into a birthday

429

:

party if it had already started.

430

:

They needed to be there first.

431

:

They needed to kind of get grounded.

432

:

They needed to kind of get a sense of the

space before, if you will, all hell broke

433

:

loose, right?

434

:

And the sensory input and the sounds and

the people and the movement and the, and

435

:

when we were able to put meaning to that,

and we put meaning to it from a place of

436

:

saying, this is just how your brain works,

right?

437

:

Your brain needs to

438

:

feel a sense of peace and anchoring in a

new space before you then have to interact

439

:

with tons of other people.

440

:

Your brain just likes a chance to, you

know, kind of chill for a little bit.

441

:

And for you to walk into a room that's

already all happening, your brain then

442

:

doesn't get the chance it needs to settle

to then be the best that it can be.

443

:

So.

444

:

Being able to provide meaning to that,

whether or not we use the label or not, I

445

:

think it's the meaning making that makes

the difference.

446

:

I think the labels, unfortunately,

fortunately, I think there's a debate on

447

:

both sides, the labels are what help us

access the services, right?

448

:

So they help us access the funding.

449

:

They help us access, you know, whether

it's respite services or speech services

450

:

or without the label.

451

:

you're not going to easily access some of

those funding services or even services in

452

:

the education system right around like in

the Ontario system that IEP IPRC process

453

:

of being able to be noted with, you know,

having exceptionalities, which is a word I

454

:

have a problem with as well.

455

:

I think, you know, realistically, and not

that I have the power to change the

456

:

system, but if I did.

457

:

I would love every student to have an IEP.

458

:

I would love the IEP process to be a

process attached to student wellness and

459

:

student learning and success for every

student, not just students who are seen as

460

:

having exceptionalities.

461

:

So that's why I continue to do the

advocacy work I do so that I can change

462

:

the system so that every child can get an

IEP.

463

:

Until then, you know.

464

:

having those labels per se, those

diagnoses, make the journey easier to get

465

:

some of those things that make the playing

field equal.

466

:

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

my kids, where sensory issues are really

467

:

significant,

468

:

for them to walk into a classroom of 30

kids is huge for them.

469

:

It takes so much energy.

470

:

And the child beside them, whose brain

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

471

:

use any of their brain power to walk into

that classroom, right?

472

:

It doesn't mean that child's brain is

better than this child's brain.

473

:

It means we have two brains who process

environment and information differently.

474

:

That's all it means.

475

:

And because the environment

476

:

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

room full of 30 other people, we need to

477

:

adapt that environment for that brain to

work.

478

:

If the environment that we constructed is

a room with three other people.

479

:

we wouldn't need to adapt the environment

for the brain, right?

480

:

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

not about individual people's brains and

481

:

their neurodiversity per se, it's about

the systems and the way we've created

482

:

environments that adaptations need to be

made because of the way that the systems

483

:

are there.

484

:

So the labels help access service, they

help with the advocacy, they help with the

485

:

shared language sometimes.

486

:

Um, there's still room for people, you

know, as you said earlier, right?

487

:

Not one person with neurodiversity

presents in the same way.

488

:

Neurodiversity is neurodiverse, diverse,

right?

489

:

And so a label of ASD or a label of FASD

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

490

:

community of realities.

491

:

It does not tell you.

492

:

who child A is because they have FASD.

493

:

It gives you a sense of child A may have,

you know, a menu of 500 different

494

:

realities from child B and you as the

adult in that system, whether you are the

495

:

parent, the teacher, the coach, the

doctor, need to then step up.

496

:

and be able to be curious about what does

FASD look like for this particular child

497

:

right now.

498

:

And know enough about neurodiversity to

know that doesn't mean that might not be

499

:

who that child presents and is tomorrow

based on, you know, the environment, based

500

:

on how well they slept last night, based

on, you know, if they have some trauma

501

:

triggers about something, right?

502

:

So I think the labels help to cue or

should help to cue other people that

503

:

there's a need for curiosity from a place

of kindness and care, not curiosity from a

504

:

place of hatred or gawking or like that

negative curiosity, but a place of

505

:

curiosity be able to say

506

:

I need to really, I need to work hard to

know who you are, not because of the

507

:

label, but I need to work hard to know who

you are because you're another human being

508

:

and I should be doing that with everybody.

509

:

The label just helps me to cue that I need

to do this a little differently possibly.

510

:

Karen, I love that idea of all children

having IEPs or even all people just having

511

:

some sort of individual human program

where we would just have this because kids

512

:

can be a pain in the ass.

513

:

All humans can be a pain in the ass.

514

:

That's just the way they are.

515

:

But if it gives somebody a heads up that

maybe my kid or myself has...

516

:

a reason for being difficult that isn't

just that there are pain in the ass, that

517

:

maybe that clock ticking is legitimately

impacting whether my kid can listen to

518

:

something, or whether I myself can listen

to something, and how much that is

519

:

informed by what we're interacting with.

520

:

I work in software.

521

:

Probably half of my coworkers are

neurodiverse if we really got down to it.

522

:

I work remotely.

523

:

For me, having a diagnosis of every part

of how my brain works really doesn't

524

:

matter because I'm in control of my own

life and nobody cares.

525

:

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

the risk of them being labeled is

526

:

difficult or non-compliant or doesn't work

up to expectations or whatever else can be

527

:

very different But I'm wondering as in

your diverse adult How do I know if my kid

528

:

needs?

529

:

more exploration of how their brain works

or if they're just weird?

530

:

Does that make sense?

531

:

My one kid is very focused on their

interests and does not like loud noises

532

:

and does not like flashing lights and all

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

533

:

something that needs more understanding

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

534

:

doesn't like loud noises.

535

:

And does it matter one way or the other, I

guess.

536

:

I think it's a great question and I think

it's a question that parents ask

537

:

themselves all the time, right, around do

we need to go further with this?

538

:

Do we need to get some help with this?

539

:

Do we not need to?

540

:

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

think the place where I land on this often

541

:

is a place of are these pieces of them

interacting in their ability to lead the

542

:

best life they can lead?

543

:

And if they are...

544

:

then I lean to the point of maybe we need

to get some more information here to see

545

:

if we can minimize the difficulty this is

having on their lives.

546

:

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

problem here to solve, right?

547

:

Like, yeah, loud noises really bother

them, okay?

548

:

And, you know, I personally don't like

549

:

I'm not saying it to minimize the impact

of the loud noises.

550

:

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

all have things that we don't like, that

551

:

are difficult, and we need to make some

decisions about whether those difficulties

552

:

impact our life to a point where they're

affecting our ability to live our best

553

:

lives, beyond our ability to problem solve

it.

554

:

So I will use my ridiculous example of not

liking corn.

555

:

to, you know, I can use my skills to

manage that, right?

556

:

In a restaurant, I don't order corn.

557

:

I don't buy it at the grocery store.

558

:

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

it, I eat what else is on the plate.

559

:

I can use my skillset.

560

:

I can use the ability I have to problem

solve to minimize that need, that impact

561

:

on my life, right?

562

:

If...

563

:

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

to me, every time I serve you food, you

564

:

don't eat it.

565

:

And it's really upsetting me.

566

:

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

567

:

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

friend.

568

:

And I don't know how to problem solve that

and manage that and have that conversation

569

:

with her to say it's not about your

cooking.

570

:

It's that I don't like corn.

571

:

Then maybe

572

:

I need to be looking at how I can come up

with some different strategies, some

573

:

different ways of doing it, because it is

impacting my life.

574

:

That analogy of the corn was really bad,

but it, I went with it because I started

575

:

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

know, does, does the need outweigh the

576

:

ability to feel like you're living your

best life and you can't use the skills or

577

:

the resources that you have to mitigate

any negative impact.

578

:

that it may have.

579

:

think that's a really good analogy

honestly as someone who, and I

580

:

legitimately know that this has come to a

shock to a number of people who know my

581

:

daughter now.

582

:

When she was about two and a half, I

pushed hard for early intervention for

583

:

speech services because she had five

words.

584

:

Mm.

585

:

and she was so frustrated and so angry and

the rest of the family was so frustrated

586

:

and so angry because she had so much to

communicate and no skills to do so and

587

:

that was a huge problem and I ran into her

speech therapist recently and asked if

588

:

perhaps there was some sort of money-back

guarantee because she now literally talks

589

:

in her sleep, talks all the time, never

590

:

She's using all of those words.

591

:

of frustration...

592

:

Oh yes, at length and repeatedly.

593

:

I don't know how in our family.

594

:

I mean, nobody else is talkative at all.

595

:

But then looking at our son, who is quite

bothered by loud noises, but it has to be

596

:

really loud before it's a problem.

597

:

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

loud noises.

598

:

And if it's not...

599

:

really impacting his day-to-day life.

600

:

You know, I mean, not liking corn is not

going to cost you job opportunities

601

:

probably, except like professional corn

eating, I guess.

602

:

You know, it's not probably really

impacting your social life.

603

:

It's not probably really messing with your

head.

604

:

You know, it's not a real problem.

605

:

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

noises, but it has to be at...

606

:

took him to the circus this weekend and he

wasn't super stoked about it because it

607

:

was very loud and very flashing lights and

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

608

:

going to run into on a daily basis.

609

:

So if it's not impacting him on a regular

basis, then hand the kid a pair of

610

:

earplugs and don't worry about it.

611

:

mitigate it.

612

:

Yeah.

613

:

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

get to a place though, where, you know,

614

:

the, the not liking corn, if I have a

visceral reaction, right?

615

:

When I see corn on the plate and it causes

me to have anxiety and it causes me to,

616

:

how am I going to manage this?

617

:

I don't know how to manage this.

618

:

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

619

:

They're going to be upset with me.

620

:

You know, then corn could be an issue,

right?

621

:

Or

622

:

I avoid going to certain places because

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

623

:

menu or I start to look in an obsessive

kind of way at the ingredient list of

624

:

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

illogical that corn would be in the

625

:

ingredient list.

626

:

So I think it can get to that place where

it could be this simple kind of piece that

627

:

then manifests into a difficulty.

628

:

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

right?

629

:

Is anything can be and anything can't be.

630

:

And I think you need the context and you

need to really be able to balance that

631

:

with the resources that someone has to

mitigate.

632

:

Sorry, I was just gonna say your example

about...

633

:

that today I can manage it.

634

:

Maybe six months from now it becomes a

bigger issue and I need to move into a

635

:

different way of looking at getting some

assessment or getting some intervention.

636

:

the way our house was for a while a child

who maybe has some struggles you can

637

:

manage well at home but then once they

enter the school system it gets to the

638

:

point where they if they can't self

advocate and it's impacting them both

639

:

socially it's impacting their teachers and

their classmates that depending on their

640

:

age and stage there might be resources

that you need now that

641

:

you didn't need six months ago, or that

you won't need six years from now or a

642

:

year from now, but there could be points

along the journey where you do need

643

:

support because there are going to be

things that are unavoidable, or that you

644

:

need them to access those services or do

those particular things that it's beyond

645

:

your ability to mitigate the things that

they can't handle or that they're

646

:

struggling with.

647

:

So that piece of what's okay in some

contexts.

648

:

when things change, then maybe you do have

to seek support or look for services or

649

:

figure out what the underlying issue is

and then see what you can do to help them

650

:

in those specific times or places even.

651

:

Mm-hmm.

652

:

And a lot of times I hear from families

that, you know, kids will hold it together

653

:

at school.

654

:

And when they come home, all hell breaks

loose.

655

:

Like they've held it together all day.

656

:

It's been really hard for them.

657

:

But when you talk to their teachers or

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

658

:

they're doing just fine.

659

:

On the outside, they're doing just fine.

660

:

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

to give the illusion that they're doing

661

:

just fine.

662

:

That when they get home.

663

:

home life for the next hour, two hours,

four hours, six hours is extremely

664

:

difficult.

665

:

And it's hard because the cause of the

distress was something that you don't have

666

:

control over and it's hard for you to

mitigate.

667

:

So you're dealing with the outcome of the

distress, but not necessarily being able

668

:

to change the cause of it.

669

:

So oftentimes I'll have families coming

looking for support.

670

:

and saying, you know, people think I'm

crazy because the teachers say, you know,

671

:

they're doing such a great job.

672

:

And when they go to grandma's house,

they're doing such a great job.

673

:

And when they go to their friend's house,

they're doing such a great job and great

674

:

job.

675

:

And, you know, and the only people who are

seeing the struggles are, you know,

676

:

parents at home.

677

:

And those, the parents are coming and

saying, are we doing something wrong?

678

:

Because how are they holding it together

in all of these other environments?

679

:

But then with us, we're seeing behavior,

we're having outbursts, and oftentimes

680

:

that's the explanation of that is that

home is the safe place for them to be able

681

:

to then expel all of the energy they've

had to hold in, in those places where

682

:

they've had to work really, really hard,

even though they haven't been doing as

683

:

well as it looks like they've been doing.

684

:

I guess the thing I wanted to add to that

as someone who is neurodiverse and dealing

685

:

with that is that the problem doesn't have

to make any sense to anyone else for it to

686

:

be a legitimate problem.

687

:

If corn has become an obsessive issue that

is causing you...

688

:

real problems, it doesn't make any

difference whether I think it's ridiculous

689

:

or not.

690

:

It needs to be treated as a real thing.

691

:

I didn't realize until I was 40 that other

people don't experience things as

692

:

physically painful when they're

bothersome.

693

:

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

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

694

:

talking about, you know.

695

:

physical and emotional actual distress,

and that if something is causing distress,

696

:

it does not matter if it makes any sense

to anyone else.

697

:

You know, that it needs to be treated and

respected in the same way as you would

698

:

presumably, you know, deal with a physical

injury to your child.

699

:

That if it is causing them distress, you

would deal with it, because that's what we

700

:

do.

701

:

And sometimes it's even, even the person

themselves can't put meaning to it, they

702

:

just know, right?

703

:

And so sometimes we get caught in this

cycle of trying to have them explain, tell

704

:

me what's going on.

705

:

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

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

706

:

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

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

707

:

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

cognitive process.

708

:

I can just tell you that this really, this

causes me pain or discomfort or it just

709

:

feels horrendous and oftentimes we're

looking for meaning so that we can try and

710

:

come up with solutions when sometimes what

we just need to do is bear witness to it

711

:

and be there and have empathy and really

help to be in relationship at the time to

712

:

help somebody work it through because

it's...

713

:

that discomforting and it's just really

hard and that's what they need at the

714

:

time.

715

:

So sometimes the answers aren't there and

we have to be okay with that.

716

:

I think that's such a great point because

I think, you know, somebody breaks a bone,

717

:

we don't expect them to explain to us what

pain is.

718

:

And there's things that are universally

bothersome and distracting to such a

719

:

degree.

720

:

I don't know anyone who wouldn't be

distracted by mosquitoes in their ears or

721

:

a fire alarm randomly going off.

722

:

You know, it's pretty expected that those

things are bothersome.

723

:

And we don't expect people to justify

being bothered by those things, or justify

724

:

being in physical pain.

725

:

And, you know, I think we can just

understand that we don't have to

726

:

understand what is causing a problem.

727

:

You know, we can just deal with the

results of it.

728

:

the services don't always exist that we

might need or we're sometimes more

729

:

interconnected than other people.

730

:

We kind of have to live in community and I

mean, we get to live in community, but how

731

:

can we support other families and other

parents adapt and be supportive?

732

:

a lot of, especially with people who are

still trying to, in our communities, who

733

:

are, who might be struggling, because

we're talking about a lot of the positive

734

:

aspects and being able to figure out

what's going on in their families.

735

:

They can go through times where they are

really struggling and feel, maybe feel

736

:

judged or can't access the services that

they need and are then feeling really

737

:

alone.

738

:

So how can we be more supportive in our

communities of people who are struggling?

739

:

I feel like that's a pretty loaded

question because there's so many layers

740

:

there.

741

:

Because you're right, there's not enough

service and the service that there is,

742

:

there's often a wait list and you know,

like there's lots of barriers sometimes to

743

:

accessing service.

744

:

I think some of what we can do is we can

look to kind of non-traditional places to

745

:

provide support, right?

746

:

So I think about, you know...

747

:

the parent in the grocery store with the

child who is having a meltdown about

748

:

something.

749

:

And I think about how much difference we

might be able to make as we walk by them

750

:

if we just say to them something like, I

see you and you're doing a good job.

751

:

And we just keep walking, right?

752

:

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

certainly had the experience more times

753

:

than I want to remember.

754

:

of having to try and manage and mitigate,

you know, difficult behavior in front of

755

:

other people.

756

:

And one of the first places I go as a

parent, as a member of the community is

757

:

shame, right?

758

:

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

and I give myself a lot of negative

759

:

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

be necessarily using all of my skills or

760

:

all of the, you know, the things I have

at...

761

:

get to the car and then you can do this

there.

762

:

want it to stop, right?

763

:

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

764

:

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

me out of here.

765

:

Yeah, yeah, exactly, exactly.

766

:

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

with chocolate bars, anything to just make

767

:

it stop, right?

768

:

So, and the difference that it could make

when you can just see that knowing look

769

:

from someone that's not judgmental,

because that's your worry.

770

:

right is that people are judging and

thinking you're sometimes somehow doing

771

:

something wrong when all kids have temper

tantrums, all adults have temper tantrums

772

:

for that matter.

773

:

Like, let's be honest here, all human

beings do.

774

:

And so why do we not see that we have such

power as community to just give that pat

775

:

on the back or that you got this mom or,

you know, the statement of, you know,

776

:

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

hard, or even just a look, right?

777

:

An eye to eye contact that says you're not

alone, right?

778

:

I think we can do those sorts of things.

779

:

I think we can think about ways that, you

know, we can encourage connection in our

780

:

community, right?

781

:

So some of the initiatives around, you

know, the benches on the schoolyard so

782

:

that kids can, if they're feeling alone,

they can.

783

:

sit on the bench and not in a way of

feeling excluded, but in a way of

784

:

normalizing to say, I'm feeling alone and

I would like a friend.

785

:

And it's not a shameful journey.

786

:

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

sorry for that child.

787

:

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

need and for that need to be acknowledged

788

:

as a valuable need.

789

:

And I have, you know, as a kindergarten

age kid, I have the power

790

:

to change that trajectory for that friend

of mine today.

791

:

They're lonely and I have the ability to

play with them, right?

792

:

So I think being able to do those sorts of

things, I think being able to ensure that

793

:

we have information available in ways that

people can access it.

794

:

They used to work in the violence against

women community and we would often leave

795

:

information taped to the back of the

bathroom stall doors.

796

:

so that people can read it in a way that

they don't necessarily feel.

797

:

Because there can be, people can feel

embarrassed or shameful, and they

798

:

shouldn't.

799

:

They shouldn't have to feel that, but they

do because of some of the structures that

800

:

are still in place.

801

:

So, especially in rural and small

communities, you may not wanna ask your

802

:

neighbor for help because your neighbor is

also the person, your life is well

803

:

intertwined with each other.

804

:

right?

805

:

And so if you want to have some of that

privacy, thinking about ways that we can

806

:

provide information that's accessible, but

private at the same time.

807

:

You know, I think also one of the one of

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

808

:

FASD network.

809

:

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

started by parents.

810

:

And it came from a place of saying, we

don't have what we need.

811

:

for our kids and for us, and the agencies

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

812

:

And it's one of the most amazing sources

of information and support and empowerment

813

:

that I know as a professional and as a

parent.

814

:

So thinking about how can I make the

difference in someone else's life?

815

:

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

with Down syndrome.

816

:

What could I do?

817

:

that could make a difference for a family

in the community that does have a child

818

:

with Down syndrome.

819

:

I don't have to walk the journey to be

able to use my individual power in the

820

:

community to make a difference for others.

821

:

So having awareness, thinking about

opportunities that I can have to make a

822

:

difference, and recognizing that no effort

is too small, right?

823

:

Because if 20 of us do a really small

thing,

824

:

it can make a huge difference.

825

:

And like I said, even those looks in the

grocery store, even those at the community

826

:

meeting, if you know that a parent is

really struggling going up to them and

827

:

saying, you know what, you're doing a

great job.

828

:

I just want you to know you're doing a

great job.

829

:

Or I just want you to know I notice you

and I notice you in a really, in a

830

:

positive way.

831

:

You know, being able to do those little

acts of kindness to be able to help people

832

:

feel like they belong and they belong in a

way that isn't shameful or isn't something

833

:

that they need to be worried about, I

think can make a huge difference while

834

:

we're still working hard to advocate for a

system and social change, right?

835

:

I mean, we have to do that big piece as

well.

836

:

But those individual interactions

relationally can make a huge difference in

837

:

the journey of a parent who is his

parenting a child who is making, sometimes

838

:

makes the journey hard.

839

:

Sometimes it's exhausting.

840

:

Sometimes you feel like you're all alone

and you're doing it all wrong.

841

:

And having the person in front of you, Tim

Horton's buying you a coffee, they have no

842

:

idea.

843

:

much difference they just made in your

life.

844

:

Like you can do simple things like that

too if you have the economic means to do

845

:

that or you know those simple things can

make a huge difference.

846

:

Like I said while we're still trying to

change the world.

847

:

with them for years.

848

:

And to that one person, that did mean the

world, right?

849

:

So that's really important to remember.

850

:

I know as our children grow up, the ways

that, you know, kind of the educational

851

:

system or social systems interact with our

kids.

852

:

change, you know, as they get older, I

know you have teens and adults, so you

853

:

know what I'm talking about.

854

:

So I'm wondering if you have any insight

for those of us who are parenting older

855

:

children who are neurodiverse, both in

kind of helping them self-advocate and yet

856

:

still being involved enough to support

them in those times where they can't

857

:

really self-advocate or haven't learned

those skills quite yet.

858

:

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

recognition, first of all, that we're

859

:

working in and working with a system that

is not what it should be.

860

:

Um, because if, if it was the system that

it should be, then we shouldn't have to

861

:

advocate.

862

:

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

863

:

Anytime I have to advocate for something

tells me that there's a lacking in the

864

:

system.

865

:

And that's not a blame of the system.

866

:

I mean, the system has been created, you

know, for eons and we make changes and we

867

:

make adaptations, but systems are slow to

change, right?

868

:

And systems tend to work better.

869

:

when they kind of look at, you know, kind

of the collective, you know, the

870

:

collective mass of the majority of people

would work well with this, right?

871

:

So anybody who's on either end of the

extremes of that majority, the system

872

:

doesn't work the best for.

873

:

So I think we have to acknowledge, first

of all, that we're working in an imperfect

874

:

system.

875

:

And that's not meaning that there's

anything wrong with our child.

876

:

And it doesn't mean there's anything wrong

with their parenting.

877

:

assume that not, yeah.

878

:

there's anything wrong with what we are

doing per se.

879

:

Maybe, maybe you are doing something

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

880

:

And that's, yeah, yeah.

881

:

And that sometimes it's not because our

kids can't advocate for themselves, it's

882

:

that they can't advocate for themselves in

an imperfect system.

883

:

And so there are times where we may need

to continue to do that role, not because

884

:

of a lacking in them, but because the

system is not set up for them to be able

885

:

to use those skills in a successful way.

886

:

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

kind of loss gain kind of, you know,

887

:

analysis of how much is this going to

888

:

cost for us to get this outcome.

889

:

So yes, maybe they can self advocate and

continue to work and continue to do, but

890

:

the cost of that is too big compared to

what we're gonna gain from them doing that

891

:

piece.

892

:

And so I'm often having those

conversations with myself in the mirror,

893

:

with my partner, with my kids, like which

battles are we gonna fight here?

894

:

right?

895

:

And I come back to that piece of is this

going to matter a year from now?

896

:

If it's not going to matter a year from

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

897

:

Are they learning some skills or gaining

some things that they can't get any other

898

:

way?

899

:

Then it might be worth it.

900

:

Could they gain these skills or gain this

information in other environments that

901

:

would be less difficult, less challenging,

maybe less affecting of their sense of

902

:

self?

903

:

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

not going to walk this walk.

904

:

Is this going to affect my relationship

with them?

905

:

And if it's going to affect my

relationship with them in a negative way,

906

:

are there things I can do to make amends

for that?

907

:

Or

908

:

If not, I really have to ask myself if

it's worth it.

909

:

It always comes back to that relational

piece, right?

910

:

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

potential loss?

911

:

I think that helping systems to remember

our kids holistically, so I advocate often

912

:

with systems for them to remember.

913

:

not just the things that my child may need

help with or is challenged with, but all

914

:

of the strengths and the wonderful things

they bring as well.

915

:

And when we only have 20 minutes for the

IEP meeting or we only have a small,

916

:

oftentimes we can jump really quickly to

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

917

:

What are the needs here?

918

:

What are the deficits?

919

:

What are the...

920

:

and I'm like, whoa, whoa.

921

:

That doesn't set a good tone for me.

922

:

It doesn't set a good tone for us.

923

:

If we're going to be deficit or negative

based.

924

:

So, you know, helping to set tone is often

something that I still do.

925

:

I do a lot of advocacy behind the scenes.

926

:

I do a lot of scripting with my kids

around, you know, these are some of the

927

:

things you might want to ask.

928

:

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

times where I attend meetings or I attend

929

:

appointments online.

930

:

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

but I'm there on the text so that if

931

:

there's a question or sometimes I'm just

sending an emoji, right?

932

:

I'm keeping that relational connection

there to say you have all of my power, you

933

:

have all of my connection, you have all of

my knowledge with you in the room, and you

934

:

can access it how and when you need to.

935

:

and there's no shame in wanting or needing

to access it, you're no more successful if

936

:

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

right?

937

:

The concept of success is if the outcome

is your needs are met in a way that you

938

:

can be the best person that you can be.

939

:

And so trying to change the messaging

about what's a successful

940

:

meeting or successful intervention,

independence did not always mean success.

941

:

I am not always at my best independently

trying to do whatever I'm doing.

942

:

I'm often usually actually at my best and

able to maximize my best self in

943

:

relationship with colleagues who can help

together.

944

:

And so this idea of independent advocacy

or being able to do it on your own.

945

:

those are some great points.

946

:

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

there are times where you go into an

947

:

appointment and you want your partner, a

sibling, a friend to come with you just to

948

:

have, yeah, to have another set of ears or

to remember to ask that question that

949

:

maybe you're not thinking of at the time

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

950

:

Because we're, yeah, we often work better

when we're using other people's skills as

951

:

well as our own.

952

:

That's a good point.

953

:

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

benefit in talking to your older kids

954

:

about the gaps in the system and saying,

this isn't just about you.

955

:

Like we're facing a system that doesn't

necessarily work for us.

956

:

So we're gonna have to do these things

together.

957

:

And I will help you.

958

:

And this is because of the system, not

because of the way you are as an

959

:

individual, right?

960

:

Absolutely, absolutely.

961

:

And I also talk to my kids a lot about the

fact that the system doesn't just work for

962

:

them, it doesn't work for most of the

kids, right?

963

:

And so, you know, when they're talking

about, you know, a colleague of theirs

964

:

who's struggling, you know, we often have

that conversation of, you know, do you

965

:

think the system's working for them?

966

:

Because what I want is also to make sure

that my kids know that they're not the

967

:

exception here.

968

:

um that most of the systems that we have

are systems that many kids struggle with

969

:

and they struggle with it for lots of

different reasons right so kids who have

970

:

anxiety issues kids who you know are have

gender diversity kids who are you know

971

:

neurodiverse kids who um you know like for

body image needs like there's so many um

972

:

realities of our humanity

973

:

that make our systems make it difficult

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

974

:

would say the majority of humans in

various systems aren't okay with being

975

:

involved in those systems, right?

976

:

And so I actually wanna normalize that,

not just for my kids, but the kids and

977

:

families I have the privilege of working

with that.

978

:

The reality is that most of us are not

okay with these systems.

979

:

You're not the exception because it's not

meeting your need.

980

:

We have to be changing these systems

because they're not meeting many people's

981

:

needs.

982

:

That then creates a community of actually

being...

983

:

a community of recognizing that many of us

aren't getting our needs met in the

984

:

various systems that we're interacting

with.

985

:

Karen, I was just thinking about how

important it is to help our kids start

986

:

learning to advocate for themselves when

they're little, because, you know, little

987

:

kids little problems.

988

:

And as much as it can be a pain in the

ass, and I might wish that my children

989

:

would quit telling me what they want,

because it would be easier to just do what

990

:

I was going to do, there are certainly

times that...

991

:

Taking into account their preferences for

things is a very important way to teach

992

:

them to advocate for themselves.

993

:

And considering that we have the entire

legal profession literally to advocate for

994

:

us when we can't do it ourselves, you

know, asking for help and asking for

995

:

guidance can be really important.

996

:

I'm wondering, as a neurodiverse parent

who struggles a lot with things like

997

:

timeliness and habits and routines and all

those things, how do we raise our kids to

998

:

not learn our habits or to...

999

:

let's just not talk about my kids' chore

charts, okay?

:

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

Let's just not.

:

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

You know, it's...

:

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

It's really hard to teach your kids skills

that you don't have.

:

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

:

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

to just keep working on it, which is

absolutely true.

:

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

:

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

doesn't come naturally to me.

:

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

So how do I make my children be better

people than I am, Karen?

:

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

:

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

together.

:

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

Help me out here, please.

:

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

Well, I actually think the answer is in

the question, which is, I think that first

:

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

:

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

struggle with.

:

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.

:

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

:

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

:

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

that need met in a different way.

:

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

Right, and so I think it's about that

concept that, you know, you said earlier

:

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

about, you know, wanting kids to learn how

to advocate for themselves early.

:

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

I think we also want kids to learn how to

advocate for others, right?

:

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

So when they see

:

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

:

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

that they have something to offer to that

person, not just for themselves, but they

:

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

can have a gift to give to that person.

:

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

:

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

we then look to others who do have

strength in it.

:

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

:

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

know I know nothing, but when they were

younger and they still had the belief that

:

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

:

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

:

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

the answer to that.

:

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

I don't know how to do that.

:

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

That's not something I'm good at.

:

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

Let's figure out who does know how to do

that.

:

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

let's look to somebody who has expertise

or knowledge in that or, you know, the

:

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

internet's become a really, I mean, within

reason, right, because you have to be able

:

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

to gauge the effectiveness of some of

those internet resources.

:

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

But, you know, organization is not one of

my skills.

:

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.

:

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

I'm certainly not organized, though.

:

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

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

recognize that my

:

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

of organization is not a skill I want to

pass on to my children.

:

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

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

people in my family who have

:

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

organizational skills, if there's places

on the internet where we can look for

:

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

strategies and ways to be organized.

:

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

I'm always looking for things that are

play and fun based because brains always

:

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

do better if it's fun.

:

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

or if it's exciting or interesting.

:

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

And the definition of fun is always

individualized, right?

:

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

What I feel like would be fun may not be

fun for you.

:

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

But if our brain is feeling energized and

excited about it, it makes the task

:

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

easier.

:

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

And I now have experts within my family.

:

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

Like one of my kids is brilliant at

organization and cleaning and it didn't

:

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

come from me.

:

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

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

:

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

They've developed those skills with,

because we had a curiosity about how to

:

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

develop them, and we looked for resources

and sources outside of ourselves, and they

:

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

have now created and have a skill set that

I still don't have.

:

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

And so I think it is that idea of

recognizing that you will never have all

:

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

of the skills and abilities your kids need

or want.

:

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

should probably wrap start.

:

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

community or that interest about being

curious about where you can access those

:

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

skills can be the answer.

:

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

:

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

whole hour of talk.

:

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

:

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

websites or books or resources that you

think would be helpful to people, either

:

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

in the adoption community or in the

neurodiversity community, if you have any

:

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

thoughts on things that you find helpful

or maybe refer to your clients or things

:

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

like that.

:

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

So I have a couple.

:

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

The first one is in the adoption

community, and these are Ontario

:

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

resources, but they're on the web, so

they're accessible to anybody.

:

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

:

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

:

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

fair bias.

:

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

I think they're a great organization and a

good resource.

:

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

Tons of online information, webinars,

education experiences, lots of free

:

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

resources on understanding adoption,

trauma, prenatal exposure, neurodiversity,

:

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

tons and tons and tons.

:

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

So that's at adoption.on.ca.

:

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

For parent support around adoption, Adopt

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

:

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

life.com.

:

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

offering parent support and information,

parent support groups, just really tons of

:

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

great information around that support area

around parenting kids who are on

:

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

permanency journeys who are adopted.

:

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

Another shameless plug for an organization

that's close to my heart is the Rural FASD

:

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

Network.

:

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

Once again, that's the network I was

talking about that started from a group of

:

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

parents around a kitchen table saying, we

need more and created this amazing

:

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

resource that has an online presence as

well as an in-person presence.

:

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

So a really, really great resource.

:

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

:

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

have questions They heard something that

I've spoken about on this podcast They

:

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

:

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

:

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

or give some more info about things

:

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

There are tons and tons and tons of

resources.

:

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

Most of them will be listed on the

adoption.on.ca and they're not just

:

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

adoption resources.

:

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

So they're about parenting kids who are

neurodiverse around dealing with trauma,

:

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

around talking to kids about difficult

things, tons of resources on that site.

:

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...

:

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

have it all in one place too.

:

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

encourage people to connect in with me if

they have specific needs, and I'll try

:

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

hard to direct them to resources.

:

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

Yeah.

:

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

:

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

four hours long, we ask all of our guests

if you were going to dominate a

:

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

category...

:

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

I'm going to start over.

:

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,

:

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

what would it be?

:

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

And categories can be real or made up to

ensure that you win.

:

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

I was going to dominate a category.

:

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

:

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

:

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

would beat the merry-go-round writing,

longest writing kind of, and I could sit

:

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

on it for hours and hours and hours and

not have to leave.

:

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

because I could last probably a few

minutes and then start to feel nauseous,

:

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

so I would not compete with you at all.

:

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

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

sure.

:

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

Yeah, that's right.

:

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

Are you a right person, Katie?

:

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

Alright, I win, I win!

:

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

I am just...

:

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

:

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

without telling me.

:

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

I love the Tilt-A-Whirl.

:

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

And the girl child also, anything with

that centrifugal force, we are here for

:

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

it.

:

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

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

of it.

:

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

Love it.

:

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

Anything upside down.

:

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

No.

:

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

Hard no on anything up in the air.

:

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.

:

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

Although I can say that drinking a fair

amount of beer and then getting on the

:

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

Gravitron, bad idea.

:

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

I'm pretty sure it forces the alcohol

through your liver faster.

:

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

Worst hangover I've ever had.

:

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

Bad, bad choice.

:

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

Yeah.

:

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

or send us an email and we will read it

out for you.

:

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

Katie, have you got something to cuss and

discuss or cuss or discuss this week?

:

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

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

:

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

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

:

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

:

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

:

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

someone else with a negative opinion of

you.

:

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

And the second part of the same cussing

and discussing is the tremendous lack of

:

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

a...

:

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

commonly used singular gender neutral way

to refer to other humans.

:

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

My daughter was corrected by a server at a

restaurant this weekend as to that

:

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

person's preferred pronouns, which is

absolutely fine with me.

:

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

I appreciate that they did it.

:

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

I really appreciate the level of

vulnerability

:

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

put him in.

:

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

:

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

:

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

pronouns at all, because I try pretty hard

not to in general, because I think

:

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

gendered pronouns are kind of bullshit.

:

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

And especially with folks where my first

perception of who I might think they

:

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

are...

:

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

may or may not match how they identify

themselves, and as I tell our children, we

:

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

believe what people tell us about who they

are.

:

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

:

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

corn, they identify in a way we don't

understand or that we might not

:

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

immediately jump to, I'm going to trust

what you say about yourself.

:

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

But the fact that there is not

:

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

good way to refer to people that is not

gendered in a singular way.

:

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

:

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

gender-neutral singular pronoun, and there

should be.

:

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

Not a pronoun.

:

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

A way to refer to other humans.

:

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

That doesn't sound like hello, fellow

human!

:

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

Who is a human?

:

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

Just humaning.

:

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

Yes.

:

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

Greetings, human!

:

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

Maybe I'll just go with that.

:

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

Anyway, so if any of our listeners have

suggestions, I really would love to hear

:

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

them.

:

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

Karen, what would you like to custom

discuss today?

:

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

:

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

:

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

reactions make me or them feel like we're

not.

:

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.

:

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

going through 10 minutes ago or a year ago

or how far we've come.

:

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

I think that, I think, you know, thinking

about how we can manage that better maybe,

:

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

:

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

really affects a lot of us and it

shouldn't, it shouldn't take that power

:

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

away from us.

:

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

So I think that would be what I would say.

:

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

in terms of systems, there's obviously

lots to improve, but I think especially in

:

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

rural places, one area that I know our

family has struggled is in finding

:

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

recreational opportunities that work for

our neurodiverse kids.

:

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

And

:

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

I'm not blaming the people who run the

programs because especially in rural

:

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

places it's mostly volunteers and it's

hard to get volunteers at all.

:

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,

:

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

that they're running programs that work

for them or that, you know, they're

:

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

following a structure that's been set out

for them.

:

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

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

:

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

And there aren't the same options, you

know, just based on geography and the

:

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

number of people who live in the places we

live.

:

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

So some of the things that might work

better for our kids that get offered in

:

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

urban areas don't end up where we

:

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

the things that are here don't always fit.

:

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

So then it means that.

:

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

that some of our kids miss out, which is

really, really difficult.

:

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

:

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

start a thing or run a program.

:

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

When you're in the trenches and just

trying to figure things out for your

:

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

family to try and start something new

might not be something that you can do

:

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

right now.

:

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

:

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

think that's maybe something I could do

something about on a bigger scale.

:

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

but right now it's just something I'm

gonna cuss about.

:

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

I don't know if you've had similar

experiences, Karen, with that side of

:

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

life.

:

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

Absolutely, or the, you know, and I get

it, I understand it, but the idea that,

:

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

you know, child can participate if parent

attends and that idea of, oh, yes, you

:

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

:

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

this.

:

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

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

but sometimes just wishing that I also

:

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

could have the hour.

:

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

to myself that the other parents are

having.

:

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

And yeah, when my kids were younger

sometimes, or the school trips, right?

:

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

:

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

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

hard, can be hard.

:

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

already gave us where people can find you.

:

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

So we're good on that end.

:

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

But thank you so much for being with us

and for having this discussion with it.

:

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

We both really appreciate it.

:

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

My absolute pleasure.

:

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

It was a lovely conversation.

:

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

Thanks for the opportunity.

:

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

Thanks so much, Karen.

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About the Podcast

Barnyard Language
Real talk about running farms and raising families.
Real talk about running farms and raising families. Whether your farm is a raised bed in your backyard or 10,000 acres and whether your family is in the planning stages or you've got 12 kids, we're glad you found us!

No sales, no religious conversion, no drama. Just honest talk from two mamas who know what it's like when everyone is telling you to just get all your meals delivered and do all your shopping online, but your internet is too slow and you've got cows to feed.

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Caithlin Palmer