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
226
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including prenatal experiences, right?
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00:15:52,269 --> 00:15:58,031
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
229
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consider myself an expert at all.
230
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When I say expertise, it's that place of
231
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of curiosity and passion about
enlightening the world about the realities
232
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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.
237
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So I think for our kids, we got as much
information as was known, but I think
238
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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
240
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kids
241
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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
243
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that kids have a life before.
244
00:17:20,244 --> 00:17:25,186
We often, I think in the adoption
community used to kind of think once kids
245
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were adopted, it was almost like they had
a new beginning, a new start.
246
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And I think
247
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I'm so glad to say we're much more
enlightened about that now and recognize
248
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that it's one person, one life, one
journey, and that it's about addition, not
249
00:17:40,651 --> 00:17:41,591
subtraction, right?
250
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It's not about a new beginning when a
child moves into adoption.
251
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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
253
00:17:54,478 --> 00:18:00,581
about the histories of the possibilities
of the realities of.
254
00:18:01,275 --> 00:18:06,289
the impact of trauma and adoption on
children, youth and adults.
255
00:18:11,539 --> 00:18:13,279
still my question, isn't it?
256
00:18:13,500 --> 00:18:16,021
I just added a whole bunch of questions in
here.
257
00:18:19,184 --> 00:18:24,106
So now none of my questions make any sense
in the order they're in.
258
00:18:26,043 --> 00:18:27,826
That sounds like my life.
259
00:18:31,179 --> 00:18:35,902
Well, I feel like I'm gonna move one of
these questions up and see if that helps
260
00:18:35,902 --> 00:18:36,662
things.
261
00:18:36,702 --> 00:18:43,487
So, as someone who...my own neurodiversity
was diagnosed at the age of 40, and
262
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realistically it's been a part of who I am
forever.
263
00:18:48,150 --> 00:18:54,794
But, you know, it was one of those doesn't
perform to expectations sort of things.
264
00:19:01,187 --> 00:19:06,110
crucial parts of who we are as adults, and
especially for women, there's been such an
265
00:19:06,110 --> 00:19:13,955
explosion in the last few years of people
who are reaching a place where we're
266
00:19:13,955 --> 00:19:20,620
completely redefining what we know to be
true about ourselves.
267
00:19:20,940 --> 00:19:26,824
And especially trying to raise children
when you're learning so much about
268
00:19:26,824 --> 00:19:29,866
yourself at the same time is really
269
00:19:31,223 --> 00:19:32,485
really strange.
270
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So I'm wondering what your thoughts are on
that, I guess.
271
00:19:39,246 --> 00:19:42,228
So I think I have a couple of thoughts as
I hear you speak.
272
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I think the first one is, I honestly
believe that our children know the truth
273
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about their identity.
274
00:19:51,135 --> 00:19:59,222
They know who they are, and oftentimes
adults, systems, et cetera, don't
275
00:19:59,222 --> 00:20:03,425
recognize that truth or try to convince
them of a different truth.
276
00:20:03,685 --> 00:20:09,174
And so I think that when adults get
diagnosed,
277
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you know, as adults with a neurodiversity.
278
00:20:14,919 --> 00:20:17,461
It's not this thing that comes out of
nowhere.
279
00:20:17,461 --> 00:20:24,127
It's this recognition of a truth that has
always been but was never honored.
280
00:20:24,127 --> 00:20:29,972
And it was always trying to be packaged in
a different way, in a way that the adults
281
00:20:29,972 --> 00:20:31,473
around could.
282
00:20:31,654 --> 00:20:36,418
explain it or understand it, sometimes
from a limited understanding of what the
283
00:20:36,418 --> 00:20:37,960
possibilities could be, right?
284
00:20:37,960 --> 00:20:43,265
So especially, like you said, for girls
and women, the idea of neurodiversity is
285
00:20:43,265 --> 00:20:45,207
often missed, right?
286
00:20:45,207 --> 00:20:52,294
Or we come up with other ways of trying to
understand those behaviors and those
287
00:20:52,294 --> 00:20:53,835
existences.
288
00:20:54,956 --> 00:20:55,917
I think it...
289
00:20:56,670 --> 00:21:00,631
I think that's why I'm so passionate about
the fact that I really want us to
290
00:21:00,631 --> 00:21:08,294
understand and really see kids for who
they are because we have that identity
291
00:21:08,294 --> 00:21:10,215
formation all the way along, right?
292
00:21:10,215 --> 00:21:14,297
From the time we're born, we start to
create through all of those different
293
00:21:14,297 --> 00:21:18,838
child development stages a sense of who
our identity is.
294
00:21:18,838 --> 00:21:25,941
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
295
00:21:26,838 --> 00:21:31,159
that there's a significant part of our
identity that we didn't know or that
296
00:21:31,159 --> 00:21:34,099
wasn't acknowledged.
297
00:21:34,099 --> 00:21:36,780
We have to kind of do some backtracking,
right?
298
00:21:36,780 --> 00:21:40,701
We kind of have to go through those
identity formation stages again.
299
00:21:40,841 --> 00:21:45,642
And if you will get to know ourselves from
this new place of truth.
300
00:21:47,163 --> 00:21:52,004
It's a similar journey when, you know, I'm
working with families around the adoption
301
00:21:52,004 --> 00:21:56,625
piece and they're saying, you know, we
haven't told our kids they're adopted.
302
00:21:57,162 --> 00:22:01,303
and they may be teenagers, young adults at
this point.
303
00:22:01,303 --> 00:22:08,705
And my first thing to say to them is
somewhere in your child's sense of who
304
00:22:08,705 --> 00:22:11,926
they are, they know that they're adopted.
305
00:22:12,506 --> 00:22:14,887
They have that in their DNA, right?
306
00:22:14,887 --> 00:22:24,109
And so I guess my long-winded answer is I
always hope that we can...
307
00:22:24,162 --> 00:22:30,767
help people understand their truth as soon
as possible so that we don't have people
308
00:22:30,767 --> 00:22:38,593
trying to re-understand themselves, you
know, 20, 30, 40 years into their lives
309
00:22:38,593 --> 00:22:40,494
with this new lens.
310
00:22:40,755 --> 00:22:46,200
And I really wanna repeat again that I
don't think the lens is new to them
311
00:22:46,200 --> 00:22:47,680
necessarily.
312
00:22:48,041 --> 00:22:53,845
I think it's this way that society or
that...
313
00:22:53,958 --> 00:22:57,721
the world has been able to translate them.
314
00:22:57,802 --> 00:23:03,027
I think people know their truth and they
often get silenced in that truth and
315
00:23:03,027 --> 00:23:06,470
saying no, that's not who you know the
reason you're acting like this is because
316
00:23:06,470 --> 00:23:11,235
of this and we come up with other
explanations other than the truth.
317
00:23:11,956 --> 00:23:17,581
And so understanding neurodiversity being
able to you know
318
00:23:18,242 --> 00:23:20,162
And this comes to one of your other
questions.
319
00:23:20,162 --> 00:23:21,082
So I'm going to jump to it.
320
00:23:21,082 --> 00:23:25,984
And sorry for that, that I'm jumping to
your question, but that idea of labels,
321
00:23:25,984 --> 00:23:26,864
right?
322
00:23:28,544 --> 00:23:34,466
Labels can be misused and they can be
things that people use to hurt people that
323
00:23:34,466 --> 00:23:41,688
belongs to the person trying to hurt a
label that helps us understand and honor.
324
00:23:41,828 --> 00:23:46,969
I want us to create a world where people
feel honor about having a
325
00:23:47,914 --> 00:23:50,735
you know, ASD or FASD.
326
00:23:50,875 --> 00:23:56,538
I don't want people to feel and think that
because I have FASD, that means there's
327
00:23:56,538 --> 00:23:58,638
something wrong with me.
328
00:23:59,099 --> 00:24:04,261
I want there to be a world where people
say, I have FASD.
329
00:24:04,401 --> 00:24:08,843
That's so that you can help understand
better how I experience the world.
330
00:24:08,843 --> 00:24:13,418
So for me, the difficulty with labels
doesn't come with the label.
331
00:24:13,418 --> 00:24:17,099
And it doesn't come with the fact that
label explains things.
332
00:24:17,099 --> 00:24:24,843
It comes with the misinformation, the
difficulty, the hatred sometimes of people
333
00:24:24,843 --> 00:24:27,305
who are using that label.
334
00:24:27,305 --> 00:24:32,927
Um, and, uh, yeah, so I don't know if I
answered that question.
335
00:24:32,927 --> 00:24:34,408
I kind of went on a rampage there.
336
00:24:34,408 --> 00:24:36,102
I hope I answered your question.
337
00:24:36,102 --> 00:24:36,964
because...
338
00:24:37,269 --> 00:24:38,433
Sorry, go ahead, Kitty.
339
00:24:40,027 --> 00:24:46,611
I feel like for some folks it's really
swung in the opposite direction now that
340
00:24:46,611 --> 00:24:54,497
we see, you know, autism is a superpower
and I am, for example for myself, I am
341
00:24:54,497 --> 00:24:59,421
very good at my job in large part because
of the way my brain works, but to say it's
342
00:24:59,421 --> 00:25:01,862
a superpower is also so...
343
00:25:02,183 --> 00:25:06,226
it's just as reductive as saying that the
way my brain works is a huge problem
344
00:25:06,226 --> 00:25:07,166
because
345
00:25:07,675 --> 00:25:14,878
it does make me very good at some things,
but I don't know that I'm gonna call being
346
00:25:14,878 --> 00:25:22,000
late either 20 minutes early out of
anxiety or late for basically everything
347
00:25:22,000 --> 00:25:28,723
ever to really be a superpower, you know,
and that it's just as reductive to see it
348
00:25:28,723 --> 00:25:34,345
in this toxic positivity kind of way.
349
00:25:34,786 --> 00:25:36,806
But at the same time
350
00:25:40,419 --> 00:25:46,165
trying not to cure people of something
that is not wrong with them.
351
00:25:46,165 --> 00:25:51,070
You know, there's nothing wrong with the
way my brain works, it just doesn't always
352
00:25:51,070 --> 00:25:58,779
work in a way that is the easiest to deal
with the way that society thinks that it
353
00:25:58,779 --> 00:26:00,180
should be working.
354
00:26:01,422 --> 00:26:02,242
But...
355
00:26:04,359 --> 00:26:06,059
it can be a real...
356
00:26:07,180 --> 00:26:11,442
it's gone so far in the other direction
too that it's, you know, it's such a
357
00:26:11,442 --> 00:26:17,165
superpower and that doesn't seem to be
something you hear from anyone who is
358
00:26:17,165 --> 00:26:27,430
neurodiverse it seems to just be a over
acceptance perhaps from other folks
359
00:26:28,342 --> 00:26:31,885
And I think we see that often, right,
where the pendulum swings from one extreme
360
00:26:31,885 --> 00:26:32,925
to the other.
361
00:26:32,925 --> 00:26:40,532
And I think, you know, when we're talking
about spectrums, I think really what we
362
00:26:40,532 --> 00:26:44,735
really want to do is honor the whole
spectrum, right, and not one extreme to
363
00:26:44,735 --> 00:26:45,715
the other.
364
00:26:45,856 --> 00:26:53,322
Bad, good, superpower, deficit, all of
these extremes, I think are meant to,
365
00:26:54,903 --> 00:26:56,564
they're meant to divide,
366
00:26:57,834 --> 00:27:03,437
When in reality, I think it's that piece
of we all have brains, all of our brains
367
00:27:03,437 --> 00:27:09,081
work differently, and that we need to kind
of challenge the social construction that
368
00:27:09,081 --> 00:27:14,505
we've come up with around valuing some
brains more than others, or some skills
369
00:27:14,505 --> 00:27:21,309
more than others, and really see
holistically that all brains have values,
370
00:27:21,309 --> 00:27:26,933
all people have value, and rather than
trying to divide ourselves.
371
00:27:26,933 --> 00:27:27,553
So.
372
00:27:27,850 --> 00:27:32,714
Yeah, I think the pendulum does often
swing, you know, we see that in many in
373
00:27:32,714 --> 00:27:37,497
many cases And I'm not sure pendulum
swings to either extreme or helpful
374
00:27:38,099 --> 00:27:45,765
I wonder too how much of that comes from
medicalizing neurodiversity that it's...
375
00:27:46,025 --> 00:27:51,290
You know, I mean, if you're diabetic,
basically you are diabetic or you're not
376
00:27:51,290 --> 00:27:51,790
diabetic.
377
00:27:51,790 --> 00:27:55,513
Like, there's not a lot of spectrum in
there.
378
00:27:55,613 --> 00:27:58,055
Or you have cancer, you don't have cancer.
379
00:27:58,055 --> 00:28:02,138
That's a pretty, like, this or that thing
where...
380
00:28:03,191 --> 00:28:10,293
being neurodiverse is a huge range of all
sorts of things and no two people are
381
00:28:10,293 --> 00:28:16,694
neurodiverse in the same way, where two
people can be diabetic in more or less the
382
00:28:16,694 --> 00:28:17,695
same way.
383
00:28:17,695 --> 00:28:26,137
And so I wonder how much of it is just
that medicine is not a great approach for
384
00:28:26,657 --> 00:28:28,838
the basics of how brains work.
385
00:28:31,235 --> 00:28:35,256
from a healthy brain standpoint, I guess.
386
00:28:35,256 --> 00:28:38,957
And now I'm just totally off, totally off
into...
387
00:28:40,638 --> 00:28:43,079
Oh well, people know to expect it by now.
388
00:28:44,259 --> 00:28:47,881
If this is the first episode you've
listened to, apologies, this is basically
389
00:28:47,881 --> 00:28:48,721
what it's like.
390
00:28:48,721 --> 00:28:51,442
So now I'm gonna let Arlene ask her
questions so that we can get back on
391
00:28:51,442 --> 00:28:52,282
track.
392
00:28:56,554 --> 00:29:01,315
So we've already been talking about labels
and Katie, I don't think you're off base.
393
00:29:01,315 --> 00:29:02,436
I get where you're coming from.
394
00:29:02,436 --> 00:29:06,937
So I know that I've heard some people say
they don't wanna label their kids and I
395
00:29:06,937 --> 00:29:10,219
really love what you're saying about
people knowing who they are, whether or
396
00:29:10,219 --> 00:29:17,201
not they've gotten that news or diagnosis
or all of the context that they need.
397
00:29:17,814 --> 00:29:22,695
they understand themselves, but maybe
can't always explain it to other people or
398
00:29:22,695 --> 00:29:28,397
it doesn't maybe make sense for them in
society potentially, or like you said, the
399
00:29:28,397 --> 00:29:30,838
way the world sometimes works.
400
00:29:30,838 --> 00:29:35,179
So some people say they don't wanna seek
diagnosis because then their kid will get
401
00:29:35,179 --> 00:29:37,900
labeled in that negative sense, right?
402
00:29:37,940 --> 00:29:42,682
And so they might be concerned that
seeking diagnosis means that they're
403
00:29:42,682 --> 00:29:44,562
actually limiting their child.
404
00:29:44,562 --> 00:29:46,503
And I was wondering what your thoughts
were
405
00:29:48,044 --> 00:29:54,027
testing, diagnosis, that kind of stuff, or
if you feel like your child has some
406
00:29:54,027 --> 00:29:58,189
differences that maybe you don't
understand and are starting the process of
407
00:29:58,189 --> 00:30:04,932
looking for support, like where do you
even start and what do you feel has value
408
00:30:04,932 --> 00:30:05,692
in that process?
409
00:30:05,692 --> 00:30:11,095
Like how can parents seek the support that
they need, both as parents and for their
410
00:30:11,095 --> 00:30:15,477
kids to learn how to understand themselves
better?
411
00:30:19,170 --> 00:30:24,114
So I think that the concept of labels
comes, and it kind of comes back to that
412
00:30:24,114 --> 00:30:28,819
medicalization piece, where we need the
label to access the service, or most
413
00:30:28,819 --> 00:30:29,519
services.
414
00:30:29,519 --> 00:30:34,684
Although I think services are getting
better at not needing labels.
415
00:30:36,045 --> 00:30:44,353
And I think that it still comes back to
that place of the label itself is not the
416
00:30:44,353 --> 00:30:45,353
problem.
417
00:30:46,090 --> 00:30:46,970
in my opinion.
418
00:30:46,970 --> 00:30:52,114
In my opinion, it is the baggage that
comes along with some of those labels and
419
00:30:52,114 --> 00:30:57,738
the assumptions and the, you know, the
discourse that comes with some of those
420
00:30:57,738 --> 00:30:58,759
pieces.
421
00:31:00,020 --> 00:31:05,704
And I think what we really want is for
children, youth and adults for that matter
422
00:31:05,704 --> 00:31:13,129
to feel a sense of pride and a sense of
wholeness in who they are.
423
00:31:13,474 --> 00:31:16,154
So I think, I do think it's individual.
424
00:31:16,154 --> 00:31:20,635
I think, you know, different kids have
different needs and expectations about
425
00:31:20,635 --> 00:31:20,835
that.
426
00:31:20,835 --> 00:31:27,417
Some kids, it really helps them to have
meaning, if you will, externalized
427
00:31:27,417 --> 00:31:32,579
meaning, to make sense of their behaviors
or their needs, or, you know, why, for
428
00:31:32,579 --> 00:31:38,400
example, you know, for one of my kids,
they could never walk into a birthday
429
00:31:38,400 --> 00:31:41,621
party if it had already started.
430
00:31:41,621 --> 00:31:43,481
They needed to be there first.
431
00:31:43,862 --> 00:31:46,063
They needed to kind of get grounded.
432
00:31:46,063 --> 00:31:50,626
They needed to kind of get a sense of the
space before, if you will, all hell broke
433
00:31:50,626 --> 00:31:51,346
loose, right?
434
00:31:51,346 --> 00:31:59,171
And the sensory input and the sounds and
the people and the movement and the, and
435
00:31:59,171 --> 00:32:05,214
when we were able to put meaning to that,
and we put meaning to it from a place of
436
00:32:05,214 --> 00:32:08,136
saying, this is just how your brain works,
right?
437
00:32:08,136 --> 00:32:10,517
Your brain needs to
438
00:32:10,918 --> 00:32:18,924
feel a sense of peace and anchoring in a
new space before you then have to interact
439
00:32:18,924 --> 00:32:20,225
with tons of other people.
440
00:32:20,225 --> 00:32:25,828
Your brain just likes a chance to, you
know, kind of chill for a little bit.
441
00:32:26,549 --> 00:32:31,633
And for you to walk into a room that's
already all happening, your brain then
442
00:32:31,633 --> 00:32:37,057
doesn't get the chance it needs to settle
to then be the best that it can be.
443
00:32:37,057 --> 00:32:37,777
So.
444
00:32:38,454 --> 00:32:44,418
Being able to provide meaning to that,
whether or not we use the label or not, I
445
00:32:44,418 --> 00:32:47,720
think it's the meaning making that makes
the difference.
446
00:32:47,860 --> 00:32:54,124
I think the labels, unfortunately,
fortunately, I think there's a debate on
447
00:32:54,124 --> 00:32:58,828
both sides, the labels are what help us
access the services, right?
448
00:32:58,828 --> 00:33:00,969
So they help us access the funding.
449
00:33:00,969 --> 00:33:05,472
They help us access, you know, whether
it's respite services or speech services
450
00:33:05,472 --> 00:33:07,913
or without the label.
451
00:33:08,118 --> 00:33:13,080
you're not going to easily access some of
those funding services or even services in
452
00:33:13,080 --> 00:33:18,984
the education system right around like in
the Ontario system that IEP IPRC process
453
00:33:19,164 --> 00:33:26,388
of being able to be noted with, you know,
having exceptionalities, which is a word I
454
00:33:26,388 --> 00:33:28,149
have a problem with as well.
455
00:33:28,970 --> 00:33:33,893
I think, you know, realistically, and not
that I have the power to change the
456
00:33:33,893 --> 00:33:35,573
system, but if I did.
457
00:33:35,590 --> 00:33:39,231
I would love every student to have an IEP.
458
00:33:39,231 --> 00:33:45,632
I would love the IEP process to be a
process attached to student wellness and
459
00:33:45,632 --> 00:33:51,954
student learning and success for every
student, not just students who are seen as
460
00:33:51,954 --> 00:33:53,554
having exceptionalities.
461
00:33:53,554 --> 00:33:58,096
So that's why I continue to do the
advocacy work I do so that I can change
462
00:33:58,096 --> 00:34:01,416
the system so that every child can get an
IEP.
463
00:34:02,277 --> 00:34:05,350
Until then, you know.
464
00:34:05,350 --> 00:34:11,334
having those labels per se, those
diagnoses, make the journey easier to get
465
00:34:11,334 --> 00:34:20,079
some of those things that make the playing
field equal.
466
00:34:20,740 --> 00:34:27,645
So, you know, for, like I said, for one of
my kids, where sensory issues are really
467
00:34:27,645 --> 00:34:29,165
significant,
468
00:34:29,666 --> 00:34:34,069
for them to walk into a classroom of 30
kids is huge for them.
469
00:34:34,069 --> 00:34:36,550
It takes so much energy.
470
00:34:36,891 --> 00:34:40,974
And the child beside them, whose brain
doesn't work like that, they don't have to
471
00:34:40,974 --> 00:34:45,116
use any of their brain power to walk into
that classroom, right?
472
00:34:45,237 --> 00:34:49,419
It doesn't mean that child's brain is
better than this child's brain.
473
00:34:49,419 --> 00:34:53,522
It means we have two brains who process
environment and information differently.
474
00:34:53,522 --> 00:34:55,223
That's all it means.
475
00:34:55,664 --> 00:34:57,986
And because the environment
476
00:34:57,986 --> 00:35:04,115
that we're asking a child to be in is a
room full of 30 other people, we need to
477
00:35:04,115 --> 00:35:07,040
adapt that environment for that brain to
work.
478
00:35:07,040 --> 00:35:13,049
If the environment that we constructed is
a room with three other people.
479
00:35:13,450 --> 00:35:16,651
we wouldn't need to adapt the environment
for the brain, right?
480
00:35:16,651 --> 00:35:22,013
So it all comes down to the fact that it's
not about individual people's brains and
481
00:35:22,013 --> 00:35:27,055
their neurodiversity per se, it's about
the systems and the way we've created
482
00:35:27,055 --> 00:35:32,537
environments that adaptations need to be
made because of the way that the systems
483
00:35:32,537 --> 00:35:32,938
are there.
484
00:35:32,938 --> 00:35:40,121
So the labels help access service, they
help with the advocacy, they help with the
485
00:35:40,121 --> 00:35:42,781
shared language sometimes.
486
00:35:43,374 --> 00:35:49,339
Um, there's still room for people, you
know, as you said earlier, right?
487
00:35:49,339 --> 00:35:52,842
Not one person with neurodiversity
presents in the same way.
488
00:35:52,842 --> 00:35:57,386
Neurodiversity is neurodiverse, diverse,
right?
489
00:35:57,386 --> 00:36:06,114
And so a label of ASD or a label of FASD
gives you, you know, a sense of a, of a
490
00:36:06,114 --> 00:36:08,556
community of realities.
491
00:36:08,556 --> 00:36:10,697
It does not tell you.
492
00:36:10,754 --> 00:36:14,676
who child A is because they have FASD.
493
00:36:14,676 --> 00:36:22,121
It gives you a sense of child A may have,
you know, a menu of 500 different
494
00:36:22,121 --> 00:36:28,885
realities from child B and you as the
adult in that system, whether you are the
495
00:36:28,885 --> 00:36:35,889
parent, the teacher, the coach, the
doctor, need to then step up.
496
00:36:36,294 --> 00:36:43,739
and be able to be curious about what does
FASD look like for this particular child
497
00:36:43,739 --> 00:36:45,580
right now.
498
00:36:45,580 --> 00:36:51,184
And know enough about neurodiversity to
know that doesn't mean that might not be
499
00:36:51,184 --> 00:36:58,609
who that child presents and is tomorrow
based on, you know, the environment, based
500
00:36:58,609 --> 00:37:02,872
on how well they slept last night, based
on, you know, if they have some trauma
501
00:37:02,872 --> 00:37:04,813
triggers about something, right?
502
00:37:05,714 --> 00:37:14,117
So I think the labels help to cue or
should help to cue other people that
503
00:37:14,117 --> 00:37:21,140
there's a need for curiosity from a place
of kindness and care, not curiosity from a
504
00:37:21,140 --> 00:37:30,545
place of hatred or gawking or like that
negative curiosity, but a place of
505
00:37:30,545 --> 00:37:32,585
curiosity be able to say
506
00:37:33,150 --> 00:37:38,177
I need to really, I need to work hard to
know who you are, not because of the
507
00:37:38,177 --> 00:37:42,644
label, but I need to work hard to know who
you are because you're another human being
508
00:37:42,644 --> 00:37:44,747
and I should be doing that with everybody.
509
00:37:44,747 --> 00:37:49,173
The label just helps me to cue that I need
to do this a little differently possibly.
510
00:37:50,499 --> 00:37:59,546
Karen, I love that idea of all children
having IEPs or even all people just having
511
00:37:59,546 --> 00:38:08,153
some sort of individual human program
where we would just have this because kids
512
00:38:08,153 --> 00:38:09,855
can be a pain in the ass.
513
00:38:09,855 --> 00:38:11,476
All humans can be a pain in the ass.
514
00:38:11,476 --> 00:38:13,197
That's just the way they are.
515
00:38:13,538 --> 00:38:19,082
But if it gives somebody a heads up that
maybe my kid or myself has...
516
00:38:19,911 --> 00:38:25,376
a reason for being difficult that isn't
just that there are pain in the ass, that
517
00:38:25,376 --> 00:38:31,702
maybe that clock ticking is legitimately
impacting whether my kid can listen to
518
00:38:31,702 --> 00:38:39,549
something, or whether I myself can listen
to something, and how much that is
519
00:38:39,549 --> 00:38:43,092
informed by what we're interacting with.
520
00:38:43,673 --> 00:38:45,094
I work in software.
521
00:38:45,315 --> 00:38:50,937
Probably half of my coworkers are
neurodiverse if we really got down to it.
522
00:38:50,937 --> 00:38:52,157
I work remotely.
523
00:38:53,558 --> 00:38:59,261
For me, having a diagnosis of every part
of how my brain works really doesn't
524
00:38:59,261 --> 00:39:04,123
matter because I'm in control of my own
life and nobody cares.
525
00:39:04,504 --> 00:39:10,626
But for my five-year-old, you know, where
the risk of them being labeled is
526
00:39:10,935 --> 00:39:18,140
difficult or non-compliant or doesn't work
up to expectations or whatever else can be
527
00:39:19,022 --> 00:39:28,610
very different But I'm wondering as in
your diverse adult How do I know if my kid
528
00:39:28,610 --> 00:39:29,410
needs?
529
00:39:31,811 --> 00:39:38,733
more exploration of how their brain works
or if they're just weird?
530
00:39:38,733 --> 00:39:40,053
Does that make sense?
531
00:39:40,994 --> 00:39:46,916
My one kid is very focused on their
interests and does not like loud noises
532
00:39:46,916 --> 00:39:52,358
and does not like flashing lights and all
this, but how do I know if this is...
533
00:39:52,923 --> 00:39:58,108
something that needs more understanding
and support or if I just say, yeah, my kid
534
00:39:58,108 --> 00:39:59,670
doesn't like loud noises.
535
00:39:59,670 --> 00:40:03,313
And does it matter one way or the other, I
guess.
536
00:40:04,566 --> 00:40:07,727
I think it's a great question and I think
it's a question that parents ask
537
00:40:07,727 --> 00:40:12,429
themselves all the time, right, around do
we need to go further with this?
538
00:40:12,429 --> 00:40:14,570
Do we need to get some help with this?
539
00:40:14,570 --> 00:40:15,970
Do we not need to?
540
00:40:16,871 --> 00:40:21,793
And I think there's no right answer, but I
think the place where I land on this often
541
00:40:21,793 --> 00:40:29,576
is a place of are these pieces of them
interacting in their ability to lead the
542
00:40:29,576 --> 00:40:32,277
best life they can lead?
543
00:40:32,277 --> 00:40:34,082
And if they are...
544
00:40:34,082 --> 00:40:38,865
then I lean to the point of maybe we need
to get some more information here to see
545
00:40:38,865 --> 00:40:43,508
if we can minimize the difficulty this is
having on their lives.
546
00:40:44,228 --> 00:40:48,952
If it's not, then I'm like, I got no
problem here to solve, right?
547
00:40:48,952 --> 00:40:53,374
Like, yeah, loud noises really bother
them, okay?
548
00:40:54,596 --> 00:40:58,358
And, you know, I personally don't like
549
00:41:03,242 --> 00:41:06,803
I'm not saying it to minimize the impact
of the loud noises.
550
00:41:06,803 --> 00:41:13,707
I'm saying it as a way of saying that we
all have things that we don't like, that
551
00:41:13,707 --> 00:41:18,710
are difficult, and we need to make some
decisions about whether those difficulties
552
00:41:18,710 --> 00:41:23,312
impact our life to a point where they're
affecting our ability to live our best
553
00:41:23,312 --> 00:41:28,015
lives, beyond our ability to problem solve
it.
554
00:41:28,375 --> 00:41:33,117
So I will use my ridiculous example of not
liking corn.
555
00:41:33,166 --> 00:41:37,707
to, you know, I can use my skills to
manage that, right?
556
00:41:37,707 --> 00:41:39,487
In a restaurant, I don't order corn.
557
00:41:39,487 --> 00:41:41,628
I don't buy it at the grocery store.
558
00:41:41,628 --> 00:41:45,509
If I'm at a friend's house and they serve
it, I eat what else is on the plate.
559
00:41:45,509 --> 00:41:48,030
I can use my skillset.
560
00:41:48,310 --> 00:41:56,133
I can use the ability I have to problem
solve to minimize that need, that impact
561
00:41:56,133 --> 00:41:58,613
on my life, right?
562
00:41:58,613 --> 00:41:59,313
If...
563
00:41:59,338 --> 00:42:04,240
you know, my friend, you know, were to say
to me, every time I serve you food, you
564
00:42:04,240 --> 00:42:04,880
don't eat it.
565
00:42:04,880 --> 00:42:06,481
And it's really upsetting me.
566
00:42:06,481 --> 00:42:09,463
And, you know, I'm taking it personally.
567
00:42:09,463 --> 00:42:11,984
And I don't think you're a very good
friend.
568
00:42:12,164 --> 00:42:16,826
And I don't know how to problem solve that
and manage that and have that conversation
569
00:42:16,826 --> 00:42:18,868
with her to say it's not about your
cooking.
570
00:42:18,868 --> 00:42:20,848
It's that I don't like corn.
571
00:42:21,629 --> 00:42:22,982
Then maybe
572
00:42:22,982 --> 00:42:26,644
I need to be looking at how I can come up
with some different strategies, some
573
00:42:26,644 --> 00:42:29,486
different ways of doing it, because it is
impacting my life.
574
00:42:29,486 --> 00:42:34,950
That analogy of the corn was really bad,
but it, I went with it because I started
575
00:42:34,950 --> 00:42:42,715
and I couldn't stop, but it really is, you
know, does, does the need outweigh the
576
00:42:42,715 --> 00:42:47,799
ability to feel like you're living your
best life and you can't use the skills or
577
00:42:47,799 --> 00:42:52,098
the resources that you have to mitigate
any negative impact.
578
00:42:52,098 --> 00:42:53,439
that it may have.
579
00:42:53,971 --> 00:42:58,414
think that's a really good analogy
honestly as someone who, and I
580
00:42:58,414 --> 00:43:03,278
legitimately know that this has come to a
shock to a number of people who know my
581
00:43:03,278 --> 00:43:04,399
daughter now.
582
00:43:06,101 --> 00:43:10,324
When she was about two and a half, I
pushed hard for early intervention for
583
00:43:10,324 --> 00:43:13,046
speech services because she had five
words.
584
00:43:13,471 --> 00:43:13,639
Mm.
585
00:43:13,639 --> 00:43:19,941
and she was so frustrated and so angry and
the rest of the family was so frustrated
586
00:43:19,941 --> 00:43:25,964
and so angry because she had so much to
communicate and no skills to do so and
587
00:43:25,964 --> 00:43:32,186
that was a huge problem and I ran into her
speech therapist recently and asked if
588
00:43:32,186 --> 00:43:37,849
perhaps there was some sort of money-back
guarantee because she now literally talks
589
00:43:37,849 --> 00:43:41,390
in her sleep, talks all the time, never
590
00:43:42,670 --> 00:43:44,439
She's using all of those words.
591
00:43:44,439 --> 00:43:45,759
of frustration...
592
00:43:47,000 --> 00:43:49,541
Oh yes, at length and repeatedly.
593
00:43:49,641 --> 00:43:51,602
I don't know how in our family.
594
00:43:51,602 --> 00:43:54,463
I mean, nobody else is talkative at all.
595
00:43:55,984 --> 00:44:02,547
But then looking at our son, who is quite
bothered by loud noises, but it has to be
596
00:44:03,168 --> 00:44:05,289
really loud before it's a problem.
597
00:44:05,289 --> 00:44:08,010
So maybe it's just that he doesn't like
loud noises.
598
00:44:08,010 --> 00:44:09,430
And if it's not...
599
00:44:10,403 --> 00:44:12,545
really impacting his day-to-day life.
600
00:44:12,545 --> 00:44:18,430
You know, I mean, not liking corn is not
going to cost you job opportunities
601
00:44:18,430 --> 00:44:22,833
probably, except like professional corn
eating, I guess.
602
00:44:23,154 --> 00:44:26,898
You know, it's not probably really
impacting your social life.
603
00:44:26,898 --> 00:44:32,202
It's not probably really messing with your
head.
604
00:44:32,202 --> 00:44:37,046
You know, it's not a real problem.
605
00:44:37,395 --> 00:44:41,656
So you know, if my kid doesn't like loud
noises, but it has to be at...
606
00:44:41,737 --> 00:44:45,358
took him to the circus this weekend and he
wasn't super stoked about it because it
607
00:44:45,358 --> 00:44:52,162
was very loud and very flashing lights and
a lot of people, that's not a thing he's
608
00:44:52,162 --> 00:44:53,822
going to run into on a daily basis.
609
00:44:53,822 --> 00:44:58,185
So if it's not impacting him on a regular
basis, then hand the kid a pair of
610
00:44:58,185 --> 00:45:01,859
earplugs and don't worry about it.
611
00:45:01,859 --> 00:45:02,900
mitigate it.
612
00:45:02,900 --> 00:45:03,461
Yeah.
613
00:45:03,461 --> 00:45:08,245
I think, I think that, you know, it can
get to a place though, where, you know,
614
00:45:08,245 --> 00:45:12,689
the, the not liking corn, if I have a
visceral reaction, right?
615
00:45:12,689 --> 00:45:18,374
When I see corn on the plate and it causes
me to have anxiety and it causes me to,
616
00:45:18,374 --> 00:45:19,415
how am I going to manage this?
617
00:45:19,415 --> 00:45:20,456
I don't know how to manage this.
618
00:45:20,456 --> 00:45:21,717
I don't know what I'm going to say.
619
00:45:21,717 --> 00:45:23,578
They're going to be upset with me.
620
00:45:23,578 --> 00:45:26,641
You know, then corn could be an issue,
right?
621
00:45:26,641 --> 00:45:27,221
Or
622
00:45:27,238 --> 00:45:31,539
I avoid going to certain places because
I'm afraid that corn is going to be on the
623
00:45:31,539 --> 00:45:38,901
menu or I start to look in an obsessive
kind of way at the ingredient list of
624
00:45:38,901 --> 00:45:43,483
everything to see if corn is, even if it's
illogical that corn would be in the
625
00:45:43,483 --> 00:45:44,603
ingredient list.
626
00:45:44,603 --> 00:45:51,766
So I think it can get to that place where
it could be this simple kind of piece that
627
00:45:51,766 --> 00:45:55,027
then manifests into a difficulty.
628
00:45:55,027 --> 00:45:57,089
And I guess that's what I'm talking about,
right?
629
00:45:57,089 --> 00:46:01,651
Is anything can be and anything can't be.
630
00:46:01,651 --> 00:46:08,675
And I think you need the context and you
need to really be able to balance that
631
00:46:08,675 --> 00:46:12,452
with the resources that someone has to
mitigate.
632
00:46:12,452 --> 00:46:14,537
Sorry, I was just gonna say your example
about...
633
00:46:14,639 --> 00:46:17,001
that today I can manage it.
634
00:46:17,001 --> 00:46:21,485
Maybe six months from now it becomes a
bigger issue and I need to move into a
635
00:46:21,485 --> 00:46:26,939
different way of looking at getting some
assessment or getting some intervention.
636
00:46:26,939 --> 00:46:31,640
the way our house was for a while a child
who maybe has some struggles you can
637
00:46:31,640 --> 00:46:36,422
manage well at home but then once they
enter the school system it gets to the
638
00:46:36,422 --> 00:46:42,083
point where they if they can't self
advocate and it's impacting them both
639
00:46:42,083 --> 00:46:46,684
socially it's impacting their teachers and
their classmates that depending on their
640
00:46:46,684 --> 00:46:50,838
age and stage there might be resources
that you need now that
641
00:46:50,838 --> 00:46:54,880
you didn't need six months ago, or that
you won't need six years from now or a
642
00:46:54,880 --> 00:46:58,603
year from now, but there could be points
along the journey where you do need
643
00:46:58,603 --> 00:47:03,386
support because there are going to be
things that are unavoidable, or that you
644
00:47:03,386 --> 00:47:08,850
need them to access those services or do
those particular things that it's beyond
645
00:47:08,850 --> 00:47:13,993
your ability to mitigate the things that
they can't handle or that they're
646
00:47:13,993 --> 00:47:15,294
struggling with.
647
00:47:15,634 --> 00:47:20,537
So that piece of what's okay in some
contexts.
648
00:47:21,026 --> 00:47:26,972
when things change, then maybe you do have
to seek support or look for services or
649
00:47:26,972 --> 00:47:32,838
figure out what the underlying issue is
and then see what you can do to help them
650
00:47:32,838 --> 00:47:36,200
in those specific times or places even.
651
00:47:39,197 --> 00:47:39,902
Mm-hmm.
652
00:47:48,510 --> 00:47:53,051
And a lot of times I hear from families
that, you know, kids will hold it together
653
00:47:53,051 --> 00:47:54,212
at school.
654
00:47:54,372 --> 00:47:56,813
And when they come home, all hell breaks
loose.
655
00:47:56,813 --> 00:47:59,634
Like they've held it together all day.
656
00:47:59,634 --> 00:48:01,955
It's been really hard for them.
657
00:48:01,955 --> 00:48:05,997
But when you talk to their teachers or
their peer group, it's like, oh no,
658
00:48:05,997 --> 00:48:07,538
they're doing just fine.
659
00:48:07,538 --> 00:48:09,318
On the outside, they're doing just fine.
660
00:48:09,318 --> 00:48:14,360
On the inside, they're working so, so hard
to give the illusion that they're doing
661
00:48:14,360 --> 00:48:15,661
just fine.
662
00:48:15,661 --> 00:48:17,441
That when they get home.
663
00:48:17,474 --> 00:48:22,818
home life for the next hour, two hours,
four hours, six hours is extremely
664
00:48:22,818 --> 00:48:23,979
difficult.
665
00:48:24,099 --> 00:48:30,445
And it's hard because the cause of the
distress was something that you don't have
666
00:48:30,445 --> 00:48:32,486
control over and it's hard for you to
mitigate.
667
00:48:32,486 --> 00:48:39,052
So you're dealing with the outcome of the
distress, but not necessarily being able
668
00:48:39,052 --> 00:48:40,693
to change the cause of it.
669
00:48:40,693 --> 00:48:46,037
So oftentimes I'll have families coming
looking for support.
670
00:48:46,602 --> 00:48:50,545
and saying, you know, people think I'm
crazy because the teachers say, you know,
671
00:48:50,545 --> 00:48:51,986
they're doing such a great job.
672
00:48:51,986 --> 00:48:54,887
And when they go to grandma's house,
they're doing such a great job.
673
00:48:54,887 --> 00:48:58,250
And when they go to their friend's house,
they're doing such a great job and great
674
00:48:58,250 --> 00:48:59,190
job.
675
00:48:59,210 --> 00:49:05,335
And, you know, and the only people who are
seeing the struggles are, you know,
676
00:49:05,335 --> 00:49:06,935
parents at home.
677
00:49:07,216 --> 00:49:11,339
And those, the parents are coming and
saying, are we doing something wrong?
678
00:49:11,339 --> 00:49:16,102
Because how are they holding it together
in all of these other environments?
679
00:49:16,150 --> 00:49:25,057
But then with us, we're seeing behavior,
we're having outbursts, and oftentimes
680
00:49:25,057 --> 00:49:31,161
that's the explanation of that is that
home is the safe place for them to be able
681
00:49:31,161 --> 00:49:36,606
to then expel all of the energy they've
had to hold in, in those places where
682
00:49:36,606 --> 00:49:40,068
they've had to work really, really hard,
even though they haven't been doing as
683
00:49:40,068 --> 00:49:42,089
well as it looks like they've been doing.
684
00:49:44,179 --> 00:49:51,501
I guess the thing I wanted to add to that
as someone who is neurodiverse and dealing
685
00:49:51,501 --> 00:49:57,823
with that is that the problem doesn't have
to make any sense to anyone else for it to
686
00:49:57,823 --> 00:49:59,684
be a legitimate problem.
687
00:50:00,544 --> 00:50:07,526
If corn has become an obsessive issue that
is causing you...
688
00:50:08,243 --> 00:50:13,346
real problems, it doesn't make any
difference whether I think it's ridiculous
689
00:50:13,346 --> 00:50:13,947
or not.
690
00:50:13,947 --> 00:50:17,749
It needs to be treated as a real thing.
691
00:50:19,211 --> 00:50:24,435
I didn't realize until I was 40 that other
people don't experience things as
692
00:50:24,435 --> 00:50:27,417
physically painful when they're
bothersome.
693
00:50:27,698 --> 00:50:32,601
That we're not talking about, you know, oh
I don't really like that light that we're
694
00:50:32,601 --> 00:50:34,022
talking about, you know.
695
00:50:34,307 --> 00:50:38,971
physical and emotional actual distress,
and that if something is causing distress,
696
00:50:38,971 --> 00:50:42,314
it does not matter if it makes any sense
to anyone else.
697
00:50:42,314 --> 00:50:49,001
You know, that it needs to be treated and
respected in the same way as you would
698
00:50:49,001 --> 00:50:54,485
presumably, you know, deal with a physical
injury to your child.
699
00:50:55,026 --> 00:50:58,450
That if it is causing them distress, you
would deal with it, because that's what we
700
00:50:58,450 --> 00:50:59,090
do.
701
00:51:01,086 --> 00:51:05,989
And sometimes it's even, even the person
themselves can't put meaning to it, they
702
00:51:05,989 --> 00:51:07,670
just know, right?
703
00:51:07,670 --> 00:51:13,314
And so sometimes we get caught in this
cycle of trying to have them explain, tell
704
00:51:13,314 --> 00:51:14,195
me what's going on.
705
00:51:14,195 --> 00:51:19,839
What's it, and they can't put words
through it, all they can say, ah, right?
706
00:51:19,839 --> 00:51:25,683
Like it's just this, it's just yuck, and I
can't tell you why, and I can't put
707
00:51:25,683 --> 00:51:29,145
meaning to it, and I can't make this a
cognitive process.
708
00:51:29,170 --> 00:51:34,731
I can just tell you that this really, this
causes me pain or discomfort or it just
709
00:51:34,731 --> 00:51:42,593
feels horrendous and oftentimes we're
looking for meaning so that we can try and
710
00:51:42,593 --> 00:51:48,175
come up with solutions when sometimes what
we just need to do is bear witness to it
711
00:51:48,175 --> 00:51:54,857
and be there and have empathy and really
help to be in relationship at the time to
712
00:51:54,857 --> 00:51:57,654
help somebody work it through because
it's...
713
00:51:57,654 --> 00:52:02,020
that discomforting and it's just really
hard and that's what they need at the
714
00:52:02,020 --> 00:52:02,841
time.
715
00:52:03,863 --> 00:52:08,349
So sometimes the answers aren't there and
we have to be okay with that.
716
00:52:09,075 --> 00:52:14,439
I think that's such a great point because
I think, you know, somebody breaks a bone,
717
00:52:14,439 --> 00:52:18,662
we don't expect them to explain to us what
pain is.
718
00:52:18,782 --> 00:52:24,047
And there's things that are universally
bothersome and distracting to such a
719
00:52:24,047 --> 00:52:24,727
degree.
720
00:52:24,727 --> 00:52:31,432
I don't know anyone who wouldn't be
distracted by mosquitoes in their ears or
721
00:52:31,633 --> 00:52:33,875
a fire alarm randomly going off.
722
00:52:33,875 --> 00:52:39,038
You know, it's pretty expected that those
things are bothersome.
723
00:52:40,143 --> 00:52:46,825
And we don't expect people to justify
being bothered by those things, or justify
724
00:52:46,825 --> 00:52:48,445
being in physical pain.
725
00:52:48,545 --> 00:52:56,908
And, you know, I think we can just
understand that we don't have to
726
00:52:56,908 --> 00:52:58,909
understand what is causing a problem.
727
00:52:58,909 --> 00:53:02,530
You know, we can just deal with the
results of it.
728
00:53:03,662 --> 00:53:09,025
the services don't always exist that we
might need or we're sometimes more
729
00:53:09,025 --> 00:53:11,687
interconnected than other people.
730
00:53:11,687 --> 00:53:17,810
We kind of have to live in community and I
mean, we get to live in community, but how
731
00:53:17,810 --> 00:53:23,533
can we support other families and other
parents adapt and be supportive?
732
00:53:24,710 --> 00:53:29,773
a lot of, especially with people who are
still trying to, in our communities, who
733
00:53:29,773 --> 00:53:33,716
are, who might be struggling, because
we're talking about a lot of the positive
734
00:53:33,716 --> 00:53:37,839
aspects and being able to figure out
what's going on in their families.
735
00:53:37,839 --> 00:53:42,522
They can go through times where they are
really struggling and feel, maybe feel
736
00:53:42,522 --> 00:53:48,226
judged or can't access the services that
they need and are then feeling really
737
00:53:48,226 --> 00:53:48,706
alone.
738
00:53:48,706 --> 00:53:53,489
So how can we be more supportive in our
communities of people who are struggling?
739
00:54:06,990 --> 00:54:10,432
I feel like that's a pretty loaded
question because there's so many layers
740
00:54:10,432 --> 00:54:11,253
there.
741
00:54:11,633 --> 00:54:15,396
Because you're right, there's not enough
service and the service that there is,
742
00:54:15,396 --> 00:54:20,060
there's often a wait list and you know,
like there's lots of barriers sometimes to
743
00:54:20,060 --> 00:54:21,641
accessing service.
744
00:54:21,802 --> 00:54:27,406
I think some of what we can do is we can
look to kind of non-traditional places to
745
00:54:27,406 --> 00:54:29,308
provide support, right?
746
00:54:29,308 --> 00:54:31,958
So I think about, you know...
747
00:54:31,958 --> 00:54:37,142
the parent in the grocery store with the
child who is having a meltdown about
748
00:54:37,142 --> 00:54:38,143
something.
749
00:54:38,523 --> 00:54:44,529
And I think about how much difference we
might be able to make as we walk by them
750
00:54:44,529 --> 00:54:48,732
if we just say to them something like, I
see you and you're doing a good job.
751
00:54:48,732 --> 00:54:51,254
And we just keep walking, right?
752
00:54:51,375 --> 00:54:57,160
Because I don't know about you, but I've
certainly had the experience more times
753
00:54:57,160 --> 00:54:59,221
than I want to remember.
754
00:54:59,550 --> 00:55:05,654
of having to try and manage and mitigate,
you know, difficult behavior in front of
755
00:55:05,654 --> 00:55:07,335
other people.
756
00:55:07,335 --> 00:55:12,779
And one of the first places I go as a
parent, as a member of the community is
757
00:55:12,779 --> 00:55:13,800
shame, right?
758
00:55:13,800 --> 00:55:18,243
Like I'm embarrassed, I don't, you know,
and I give myself a lot of negative
759
00:55:18,243 --> 00:55:24,447
self-talk of, oh, you know, and I may not
be necessarily using all of my skills or
760
00:55:24,447 --> 00:55:27,216
all of the, you know, the things I have
at...
761
00:55:27,216 --> 00:55:29,079
get to the car and then you can do this
there.
762
00:55:29,079 --> 00:55:30,700
want it to stop, right?
763
00:55:30,700 --> 00:55:33,122
Like, you know, please, can we just stop?
764
00:55:33,122 --> 00:55:37,526
Can we just get to the, you know, like get
me out of here.
765
00:55:37,987 --> 00:55:41,289
Yeah, yeah, exactly, exactly.
766
00:55:41,289 --> 00:55:45,793
And you know, I may have, you know, bribed
with chocolate bars, anything to just make
767
00:55:45,793 --> 00:55:47,374
it stop, right?
768
00:55:47,995 --> 00:55:52,479
So, and the difference that it could make
when you can just see that knowing look
769
00:55:52,479 --> 00:55:55,466
from someone that's not judgmental,
because that's your worry.
770
00:55:55,466 --> 00:56:00,109
right is that people are judging and
thinking you're sometimes somehow doing
771
00:56:00,109 --> 00:56:07,053
something wrong when all kids have temper
tantrums, all adults have temper tantrums
772
00:56:07,053 --> 00:56:07,674
for that matter.
773
00:56:07,674 --> 00:56:10,496
Like, let's be honest here, all human
beings do.
774
00:56:10,496 --> 00:56:19,282
And so why do we not see that we have such
power as community to just give that pat
775
00:56:19,282 --> 00:56:24,365
on the back or that you got this mom or,
you know, the statement of, you know,
776
00:56:25,202 --> 00:56:29,325
you know, way to go dad, you're working
hard, or even just a look, right?
777
00:56:29,325 --> 00:56:32,728
An eye to eye contact that says you're not
alone, right?
778
00:56:32,728 --> 00:56:34,850
I think we can do those sorts of things.
779
00:56:34,850 --> 00:56:44,218
I think we can think about ways that, you
know, we can encourage connection in our
780
00:56:44,218 --> 00:56:45,039
community, right?
781
00:56:45,039 --> 00:56:49,343
So some of the initiatives around, you
know, the benches on the schoolyard so
782
00:56:49,343 --> 00:56:52,765
that kids can, if they're feeling alone,
they can.
783
00:56:52,830 --> 00:56:57,412
sit on the bench and not in a way of
feeling excluded, but in a way of
784
00:56:57,412 --> 00:57:02,615
normalizing to say, I'm feeling alone and
I would like a friend.
785
00:57:02,615 --> 00:57:04,656
And it's not a shameful journey.
786
00:57:04,656 --> 00:57:07,638
And it's not a journey of, oh, let's feel
sorry for that child.
787
00:57:07,638 --> 00:57:14,742
It's a journey of, it's okay to express a
need and for that need to be acknowledged
788
00:57:14,742 --> 00:57:16,182
as a valuable need.
789
00:57:16,182 --> 00:57:22,445
And I have, you know, as a kindergarten
age kid, I have the power
790
00:57:22,606 --> 00:57:26,687
to change that trajectory for that friend
of mine today.
791
00:57:26,687 --> 00:57:30,708
They're lonely and I have the ability to
play with them, right?
792
00:57:30,748 --> 00:57:35,649
So I think being able to do those sorts of
things, I think being able to ensure that
793
00:57:35,649 --> 00:57:40,011
we have information available in ways that
people can access it.
794
00:57:40,011 --> 00:57:46,012
They used to work in the violence against
women community and we would often leave
795
00:57:46,012 --> 00:57:50,033
information taped to the back of the
bathroom stall doors.
796
00:57:50,230 --> 00:57:55,412
so that people can read it in a way that
they don't necessarily feel.
797
00:57:55,492 --> 00:58:00,395
Because there can be, people can feel
embarrassed or shameful, and they
798
00:58:00,395 --> 00:58:01,375
shouldn't.
799
00:58:01,576 --> 00:58:05,498
They shouldn't have to feel that, but they
do because of some of the structures that
800
00:58:05,498 --> 00:58:06,779
are still in place.
801
00:58:06,779 --> 00:58:11,421
So, especially in rural and small
communities, you may not wanna ask your
802
00:58:11,421 --> 00:58:17,724
neighbor for help because your neighbor is
also the person, your life is well
803
00:58:17,885 --> 00:58:19,486
intertwined with each other.
804
00:58:19,486 --> 00:58:19,746
right?
805
00:58:19,746 --> 00:58:25,049
And so if you want to have some of that
privacy, thinking about ways that we can
806
00:58:25,049 --> 00:58:30,053
provide information that's accessible, but
private at the same time.
807
00:58:30,053 --> 00:58:37,078
You know, I think also one of the one of
the groups that I'm a part of is the rural
808
00:58:37,078 --> 00:58:38,279
FASD network.
809
00:58:38,279 --> 00:58:43,683
And it was it's a network that's been
started by parents.
810
00:58:43,683 --> 00:58:48,098
And it came from a place of saying, we
don't have what we need.
811
00:58:48,098 --> 00:58:54,441
for our kids and for us, and the agencies
aren't doing it, we're gonna do it.
812
00:58:54,441 --> 00:59:03,746
And it's one of the most amazing sources
of information and support and empowerment
813
00:59:03,746 --> 00:59:07,788
that I know as a professional and as a
parent.
814
00:59:07,788 --> 00:59:12,091
So thinking about how can I make the
difference in someone else's life?
815
00:59:12,091 --> 00:59:16,333
Maybe, for example, I don't have a child
with Down syndrome.
816
00:59:16,393 --> 00:59:17,633
What could I do?
817
00:59:17,806 --> 00:59:21,427
that could make a difference for a family
in the community that does have a child
818
00:59:21,427 --> 00:59:22,288
with Down syndrome.
819
00:59:22,288 --> 00:59:27,870
I don't have to walk the journey to be
able to use my individual power in the
820
00:59:27,870 --> 00:59:29,631
community to make a difference for others.
821
00:59:29,631 --> 00:59:35,654
So having awareness, thinking about
opportunities that I can have to make a
822
00:59:35,654 --> 00:59:40,536
difference, and recognizing that no effort
is too small, right?
823
00:59:40,536 --> 00:59:43,917
Because if 20 of us do a really small
thing,
824
00:59:44,038 --> 00:59:46,719
it can make a huge difference.
825
00:59:46,719 --> 00:59:56,223
And like I said, even those looks in the
grocery store, even those at the community
826
00:59:56,223 --> 01:00:01,846
meeting, if you know that a parent is
really struggling going up to them and
827
01:00:01,846 --> 01:00:04,007
saying, you know what, you're doing a
great job.
828
01:00:04,007 --> 01:00:05,847
I just want you to know you're doing a
great job.
829
01:00:05,847 --> 01:00:09,689
Or I just want you to know I notice you
and I notice you in a really, in a
830
01:00:09,689 --> 01:00:10,949
positive way.
831
01:00:11,526 --> 01:00:17,090
You know, being able to do those little
acts of kindness to be able to help people
832
01:00:17,090 --> 01:00:24,416
feel like they belong and they belong in a
way that isn't shameful or isn't something
833
01:00:24,416 --> 01:00:28,759
that they need to be worried about, I
think can make a huge difference while
834
01:00:28,759 --> 01:00:33,683
we're still working hard to advocate for a
system and social change, right?
835
01:00:33,683 --> 01:00:36,345
I mean, we have to do that big piece as
well.
836
01:00:37,046 --> 01:00:41,550
But those individual interactions
relationally can make a huge difference in
837
01:00:41,550 --> 01:00:46,935
the journey of a parent who is his
parenting a child who is making, sometimes
838
01:00:46,935 --> 01:00:48,156
makes the journey hard.
839
01:00:48,156 --> 01:00:49,898
Sometimes it's exhausting.
840
01:00:49,898 --> 01:00:54,162
Sometimes you feel like you're all alone
and you're doing it all wrong.
841
01:00:54,162 --> 01:01:00,989
And having the person in front of you, Tim
Horton's buying you a coffee, they have no
842
01:01:00,989 --> 01:01:01,889
idea.
843
01:01:02,154 --> 01:01:04,096
much difference they just made in your
life.
844
01:01:04,096 --> 01:01:08,020
Like you can do simple things like that
too if you have the economic means to do
845
01:01:08,020 --> 01:01:13,787
that or you know those simple things can
make a huge difference.
846
01:01:13,787 --> 01:01:15,916
Like I said while we're still trying to
change the world.
847
01:01:15,916 --> 01:01:17,877
with them for years.
848
01:01:17,877 --> 01:01:20,679
And to that one person, that did mean the
world, right?
849
01:01:20,679 --> 01:01:23,241
So that's really important to remember.
850
01:01:24,562 --> 01:01:30,226
I know as our children grow up, the ways
that, you know, kind of the educational
851
01:01:30,226 --> 01:01:35,422
system or social systems interact with our
kids.
852
01:01:35,422 --> 01:01:39,244
change, you know, as they get older, I
know you have teens and adults, so you
853
01:01:39,244 --> 01:01:40,445
know what I'm talking about.
854
01:01:40,445 --> 01:01:44,448
So I'm wondering if you have any insight
for those of us who are parenting older
855
01:01:44,448 --> 01:01:49,911
children who are neurodiverse, both in
kind of helping them self-advocate and yet
856
01:01:49,911 --> 01:01:55,035
still being involved enough to support
them in those times where they can't
857
01:01:55,035 --> 01:01:59,297
really self-advocate or haven't learned
those skills quite yet.
858
01:02:13,374 --> 01:02:19,685
Yeah, I think for me, once again, it's a
recognition, first of all, that we're
859
01:02:19,685 --> 01:02:24,653
working in and working with a system that
is not what it should be.
860
01:02:26,886 --> 01:02:32,369
Um, because if, if it was the system that
it should be, then we shouldn't have to
861
01:02:32,369 --> 01:02:33,269
advocate.
862
01:02:33,269 --> 01:02:36,571
So that's kind of my, my baseline, right?
863
01:02:36,571 --> 01:02:40,133
Anytime I have to advocate for something
tells me that there's a lacking in the
864
01:02:40,133 --> 01:02:40,513
system.
865
01:02:40,513 --> 01:02:42,615
And that's not a blame of the system.
866
01:02:42,615 --> 01:02:48,178
I mean, the system has been created, you
know, for eons and we make changes and we
867
01:02:48,178 --> 01:02:51,199
make adaptations, but systems are slow to
change, right?
868
01:02:51,199 --> 01:02:55,061
And systems tend to work better.
869
01:02:55,126 --> 01:03:00,268
when they kind of look at, you know, kind
of the collective, you know, the
870
01:03:00,268 --> 01:03:04,691
collective mass of the majority of people
would work well with this, right?
871
01:03:04,691 --> 01:03:08,733
So anybody who's on either end of the
extremes of that majority, the system
872
01:03:08,733 --> 01:03:10,874
doesn't work the best for.
873
01:03:10,874 --> 01:03:15,577
So I think we have to acknowledge, first
of all, that we're working in an imperfect
874
01:03:15,577 --> 01:03:16,457
system.
875
01:03:17,138 --> 01:03:21,320
And that's not meaning that there's
anything wrong with our child.
876
01:03:21,840 --> 01:03:23,983
And it doesn't mean there's anything wrong
with their parenting.
877
01:03:23,983 --> 01:03:25,158
assume that not, yeah.
878
01:03:25,158 --> 01:03:28,361
there's anything wrong with what we are
doing per se.
879
01:03:28,361 --> 01:03:33,305
Maybe, maybe you are doing something
wrong, but it's not the default, right?
880
01:03:34,367 --> 01:03:39,031
And that's, yeah, yeah.
881
01:03:39,752 --> 01:03:47,159
And that sometimes it's not because our
kids can't advocate for themselves, it's
882
01:03:47,159 --> 01:03:50,741
that they can't advocate for themselves in
an imperfect system.
883
01:03:53,346 --> 01:04:00,772
And so there are times where we may need
to continue to do that role, not because
884
01:04:00,772 --> 01:04:07,117
of a lacking in them, but because the
system is not set up for them to be able
885
01:04:07,117 --> 01:04:09,779
to use those skills in a successful way.
886
01:04:10,500 --> 01:04:17,886
And I'm also, I'm always looking at that
kind of loss gain kind of, you know,
887
01:04:17,886 --> 01:04:21,902
analysis of how much is this going to
888
01:04:21,902 --> 01:04:25,763
cost for us to get this outcome.
889
01:04:26,404 --> 01:04:34,088
So yes, maybe they can self advocate and
continue to work and continue to do, but
890
01:04:34,088 --> 01:04:40,992
the cost of that is too big compared to
what we're gonna gain from them doing that
891
01:04:40,992 --> 01:04:41,252
piece.
892
01:04:41,252 --> 01:04:47,455
And so I'm often having those
conversations with myself in the mirror,
893
01:04:47,455 --> 01:04:51,978
with my partner, with my kids, like which
battles are we gonna fight here?
894
01:04:51,978 --> 01:04:54,039
right?
895
01:04:54,600 --> 01:04:59,384
And I come back to that piece of is this
going to matter a year from now?
896
01:04:59,384 --> 01:05:03,987
If it's not going to matter a year from
now, why am I making a big deal of it?
897
01:05:04,108 --> 01:05:09,252
Are they learning some skills or gaining
some things that they can't get any other
898
01:05:09,252 --> 01:05:09,752
way?
899
01:05:09,752 --> 01:05:11,433
Then it might be worth it.
900
01:05:12,222 --> 01:05:16,944
Could they gain these skills or gain this
information in other environments that
901
01:05:16,944 --> 01:05:22,226
would be less difficult, less challenging,
maybe less affecting of their sense of
902
01:05:22,226 --> 01:05:23,306
self?
903
01:05:23,586 --> 01:05:27,968
Maybe then I'm not going to, you know, I'm
not going to walk this walk.
904
01:05:28,228 --> 01:05:33,070
Is this going to affect my relationship
with them?
905
01:05:33,070 --> 01:05:36,992
And if it's going to affect my
relationship with them in a negative way,
906
01:05:36,992 --> 01:05:40,333
are there things I can do to make amends
for that?
907
01:05:40,513 --> 01:05:41,113
Or
908
01:05:41,482 --> 01:05:45,443
If not, I really have to ask myself if
it's worth it.
909
01:05:45,443 --> 01:05:48,664
It always comes back to that relational
piece, right?
910
01:05:48,664 --> 01:05:52,985
And what's the gain here and what's the
potential loss?
911
01:05:54,385 --> 01:06:07,049
I think that helping systems to remember
our kids holistically, so I advocate often
912
01:06:07,049 --> 01:06:10,569
with systems for them to remember.
913
01:06:10,738 --> 01:06:15,602
not just the things that my child may need
help with or is challenged with, but all
914
01:06:15,602 --> 01:06:19,164
of the strengths and the wonderful things
they bring as well.
915
01:06:19,185 --> 01:06:23,948
And when we only have 20 minutes for the
IEP meeting or we only have a small,
916
01:06:24,149 --> 01:06:27,732
oftentimes we can jump really quickly to
the, okay, what do we need to figure out?
917
01:06:27,732 --> 01:06:28,593
What are the needs here?
918
01:06:28,593 --> 01:06:29,653
What are the deficits?
919
01:06:29,653 --> 01:06:30,194
What are the...
920
01:06:30,194 --> 01:06:31,975
and I'm like, whoa, whoa.
921
01:06:32,536 --> 01:06:34,257
That doesn't set a good tone for me.
922
01:06:34,257 --> 01:06:36,099
It doesn't set a good tone for us.
923
01:06:36,099 --> 01:06:39,641
If we're going to be deficit or negative
based.
924
01:06:40,222 --> 01:06:47,027
So, you know, helping to set tone is often
something that I still do.
925
01:06:47,048 --> 01:06:49,750
I do a lot of advocacy behind the scenes.
926
01:06:49,750 --> 01:06:56,256
I do a lot of scripting with my kids
around, you know, these are some of the
927
01:06:56,256 --> 01:06:58,417
things you might want to ask.
928
01:06:58,417 --> 01:07:06,324
I do a lot of kind of even now there's
times where I attend meetings or I attend
929
01:07:06,324 --> 01:07:08,046
appointments online.
930
01:07:08,046 --> 01:07:12,710
through texting, so I'm not in the room,
but I'm there on the text so that if
931
01:07:12,710 --> 01:07:17,654
there's a question or sometimes I'm just
sending an emoji, right?
932
01:07:17,654 --> 01:07:24,580
I'm keeping that relational connection
there to say you have all of my power, you
933
01:07:24,580 --> 01:07:31,026
have all of my connection, you have all of
my knowledge with you in the room, and you
934
01:07:31,026 --> 01:07:34,789
can access it how and when you need to.
935
01:07:35,106 --> 01:07:41,491
and there's no shame in wanting or needing
to access it, you're no more successful if
936
01:07:41,491 --> 01:07:45,035
you access it or if you don't access it,
right?
937
01:07:45,035 --> 01:07:51,100
The concept of success is if the outcome
is your needs are met in a way that you
938
01:07:51,100 --> 01:07:54,283
can be the best person that you can be.
939
01:07:54,283 --> 01:08:01,909
And so trying to change the messaging
about what's a successful
940
01:08:01,926 --> 01:08:08,387
meeting or successful intervention,
independence did not always mean success.
941
01:08:08,407 --> 01:08:14,049
I am not always at my best independently
trying to do whatever I'm doing.
942
01:08:14,049 --> 01:08:20,711
I'm often usually actually at my best and
able to maximize my best self in
943
01:08:20,711 --> 01:08:24,252
relationship with colleagues who can help
together.
944
01:08:24,272 --> 01:08:29,042
And so this idea of independent advocacy
or being able to do it on your own.
945
01:08:29,042 --> 01:08:30,582
those are some great points.
946
01:08:30,843 --> 01:08:35,105
I mean, I know even as an adult, yeah,
there are times where you go into an
947
01:08:35,105 --> 01:08:40,368
appointment and you want your partner, a
sibling, a friend to come with you just to
948
01:08:40,368 --> 01:08:44,511
have, yeah, to have another set of ears or
to remember to ask that question that
949
01:08:44,511 --> 01:08:48,253
maybe you're not thinking of at the time
or have a podcast co-host, right, Katie?
950
01:08:48,253 --> 01:08:55,277
Because we're, yeah, we often work better
when we're using other people's skills as
951
01:08:55,277 --> 01:08:56,537
well as our own.
952
01:08:56,578 --> 01:08:57,558
That's a good point.
953
01:08:57,558 --> 01:09:01,902
I wonder too, do you feel like there's any
benefit in talking to your older kids
954
01:09:01,902 --> 01:09:05,586
about the gaps in the system and saying,
this isn't just about you.
955
01:09:05,586 --> 01:09:11,131
Like we're facing a system that doesn't
necessarily work for us.
956
01:09:11,131 --> 01:09:13,853
So we're gonna have to do these things
together.
957
01:09:14,734 --> 01:09:16,555
And I will help you.
958
01:09:16,555 --> 01:09:21,760
And this is because of the system, not
because of the way you are as an
959
01:09:21,760 --> 01:09:23,261
individual, right?
960
01:09:32,430 --> 01:09:34,851
Absolutely, absolutely.
961
01:09:34,851 --> 01:09:39,815
And I also talk to my kids a lot about the
fact that the system doesn't just work for
962
01:09:39,815 --> 01:09:42,537
them, it doesn't work for most of the
kids, right?
963
01:09:42,537 --> 01:09:47,900
And so, you know, when they're talking
about, you know, a colleague of theirs
964
01:09:47,900 --> 01:09:52,163
who's struggling, you know, we often have
that conversation of, you know, do you
965
01:09:52,163 --> 01:09:54,785
think the system's working for them?
966
01:09:54,785 --> 01:09:59,889
Because what I want is also to make sure
that my kids know that they're not the
967
01:09:59,889 --> 01:10:01,249
exception here.
968
01:10:02,578 --> 01:10:09,683
um that most of the systems that we have
are systems that many kids struggle with
969
01:10:09,683 --> 01:10:13,365
and they struggle with it for lots of
different reasons right so kids who have
970
01:10:13,365 --> 01:10:20,270
anxiety issues kids who you know are have
gender diversity kids who are you know
971
01:10:20,270 --> 01:10:29,256
neurodiverse kids who um you know like for
body image needs like there's so many um
972
01:10:29,376 --> 01:10:31,797
realities of our humanity
973
01:10:32,086 --> 01:10:38,893
that make our systems make it difficult
for us to be okay with who we are, that I
974
01:10:38,893 --> 01:10:44,399
would say the majority of humans in
various systems aren't okay with being
975
01:10:44,399 --> 01:10:46,621
involved in those systems, right?
976
01:10:46,621 --> 01:10:51,827
And so I actually wanna normalize that,
not just for my kids, but the kids and
977
01:10:51,827 --> 01:10:54,422
families I have the privilege of working
with that.
978
01:10:54,422 --> 01:10:58,985
The reality is that most of us are not
okay with these systems.
979
01:10:59,285 --> 01:11:03,808
You're not the exception because it's not
meeting your need.
980
01:11:05,870 --> 01:11:10,513
We have to be changing these systems
because they're not meeting many people's
981
01:11:10,513 --> 01:11:11,514
needs.
982
01:11:14,396 --> 01:11:20,620
That then creates a community of actually
being...
983
01:11:22,862 --> 01:11:27,114
a community of recognizing that many of us
aren't getting our needs met in the
984
01:11:27,114 --> 01:11:30,621
various systems that we're interacting
with.
985
01:11:32,931 --> 01:11:37,692
Karen, I was just thinking about how
important it is to help our kids start
986
01:11:37,692 --> 01:11:43,154
learning to advocate for themselves when
they're little, because, you know, little
987
01:11:43,154 --> 01:11:44,854
kids little problems.
988
01:11:44,854 --> 01:11:50,856
And as much as it can be a pain in the
ass, and I might wish that my children
989
01:11:50,856 --> 01:11:55,657
would quit telling me what they want,
because it would be easier to just do what
990
01:11:55,657 --> 01:11:59,758
I was going to do, there are certainly
times that...
991
01:12:01,155 --> 01:12:05,859
Taking into account their preferences for
things is a very important way to teach
992
01:12:05,859 --> 01:12:08,942
them to advocate for themselves.
993
01:12:09,083 --> 01:12:17,091
And considering that we have the entire
legal profession literally to advocate for
994
01:12:17,091 --> 01:12:22,696
us when we can't do it ourselves, you
know, asking for help and asking for
995
01:12:22,696 --> 01:12:24,778
guidance can be really important.
996
01:12:26,435 --> 01:12:31,498
I'm wondering, as a neurodiverse parent
who struggles a lot with things like
997
01:12:31,999 --> 01:12:40,065
timeliness and habits and routines and all
those things, how do we raise our kids to
998
01:12:40,065 --> 01:12:47,030
not learn our habits or to...
999
01:12:47,030 --> 01:12:49,732
let's just not talk about my kids' chore
charts, okay?
Speaker:
01:12:49,732 --> 01:12:51,513
Let's just not.
Speaker:
01:12:52,254 --> 01:12:53,474
You know, it's...
Speaker:
01:12:54,235 --> 01:12:59,160
It's really hard to teach your kids skills
that you don't have.
Speaker:
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
Speaker:
01:13:04,907 --> 01:13:07,410
to just keep working on it, which is
absolutely true.
Speaker:
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
Speaker:
01:13:12,135 --> 01:13:14,137
doesn't come naturally to me.
Speaker:
01:13:16,151 --> 01:13:19,035
So how do I make my children be better
people than I am, Karen?
Speaker:
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
Speaker:
01:13:22,661 --> 01:13:23,762
together.
Speaker:
01:13:25,366 --> 01:13:27,208
Help me out here, please.
Speaker:
01:13:29,396 --> 01:13:39,224
Well, I actually think the answer is in
the question, which is, I think that first
Speaker:
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
Speaker:
01:13:47,131 --> 01:13:48,151
struggle with.
Speaker:
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.
Speaker:
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
Speaker:
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
Speaker:
01:14:07,602 --> 01:14:10,323
that need met in a different way.
Speaker:
01:14:10,323 --> 01:14:16,466
Right, and so I think it's about that
concept that, you know, you said earlier
Speaker:
01:14:16,466 --> 01:14:20,827
about, you know, wanting kids to learn how
to advocate for themselves early.
Speaker:
01:14:20,827 --> 01:14:24,909
I think we also want kids to learn how to
advocate for others, right?
Speaker:
01:14:24,909 --> 01:14:26,249
So when they see
Speaker:
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
Speaker:
01:14:33,521 --> 01:14:38,325
that they have something to offer to that
person, not just for themselves, but they
Speaker:
01:14:38,325 --> 01:14:40,107
can have a gift to give to that person.
Speaker:
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
Speaker:
01:14:46,974 --> 01:14:49,876
we then look to others who do have
strength in it.
Speaker:
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
Speaker:
01:14:55,432 --> 01:15:00,214
know I know nothing, but when they were
younger and they still had the belief that
Speaker:
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
Speaker:
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
Speaker:
01:15:10,879 --> 01:15:11,719
the answer to that.
Speaker:
01:15:11,719 --> 01:15:13,080
I don't know how to do that.
Speaker:
01:15:13,080 --> 01:15:15,140
That's not something I'm good at.
Speaker:
01:15:15,281 --> 01:15:17,458
Let's figure out who does know how to do
that.
Speaker:
01:15:17,458 --> 01:15:23,643
let's look to somebody who has expertise
or knowledge in that or, you know, the
Speaker:
01:15:23,643 --> 01:15:27,706
internet's become a really, I mean, within
reason, right, because you have to be able
Speaker:
01:15:27,706 --> 01:15:31,089
to gauge the effectiveness of some of
those internet resources.
Speaker:
01:15:31,089 --> 01:15:34,852
But, you know, organization is not one of
my skills.
Speaker:
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.
Speaker:
01:15:39,576 --> 01:15:41,517
I'm certainly not organized, though.
Speaker:
01:15:41,517 --> 01:15:47,282
And, and so when I'm looking, and I
recognize that my
Speaker:
01:15:47,282 --> 01:15:51,425
of organization is not a skill I want to
pass on to my children.
Speaker:
01:15:52,106 --> 01:15:56,210
And so I'm looking to if there's other
people in my family who have
Speaker:
01:15:56,210 --> 01:16:01,695
organizational skills, if there's places
on the internet where we can look for
Speaker:
01:16:01,696 --> 01:16:04,558
strategies and ways to be organized.
Speaker:
01:16:04,719 --> 01:16:10,064
I'm always looking for things that are
play and fun based because brains always
Speaker:
01:16:10,064 --> 01:16:11,865
do better if it's fun.
Speaker:
01:16:12,254 --> 01:16:14,534
or if it's exciting or interesting.
Speaker:
01:16:14,534 --> 01:16:17,455
And the definition of fun is always
individualized, right?
Speaker:
01:16:17,455 --> 01:16:20,796
What I feel like would be fun may not be
fun for you.
Speaker:
01:16:21,256 --> 01:16:27,158
But if our brain is feeling energized and
excited about it, it makes the task
Speaker:
01:16:27,158 --> 01:16:28,178
easier.
Speaker:
01:16:28,958 --> 01:16:31,039
And I now have experts within my family.
Speaker:
01:16:31,039 --> 01:16:37,881
Like one of my kids is brilliant at
organization and cleaning and it didn't
Speaker:
01:16:37,881 --> 01:16:38,861
come from me.
Speaker:
01:16:38,861 --> 01:16:41,981
There's no ifs, ands, or buts about that.
Speaker:
01:16:42,326 --> 01:16:48,268
They've developed those skills with,
because we had a curiosity about how to
Speaker:
01:16:48,268 --> 01:16:55,071
develop them, and we looked for resources
and sources outside of ourselves, and they
Speaker:
01:16:55,071 --> 01:16:59,713
have now created and have a skill set that
I still don't have.
Speaker:
01:17:00,033 --> 01:17:06,276
And so I think it is that idea of
recognizing that you will never have all
Speaker:
01:17:06,276 --> 01:17:09,807
of the skills and abilities your kids need
or want.
Speaker:
01:17:09,807 --> 01:17:11,884
should probably wrap start.
Speaker:
01:17:11,884 --> 01:17:17,091
community or that interest about being
curious about where you can access those
Speaker:
01:17:17,091 --> 01:17:18,570
skills can be the answer.
Speaker:
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
Speaker:
01:17:23,872 --> 01:17:24,772
whole hour of talk.
Speaker:
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
Speaker:
01:17:29,814 --> 01:17:36,057
websites or books or resources that you
think would be helpful to people, either
Speaker:
01:17:36,057 --> 01:17:41,019
in the adoption community or in the
neurodiversity community, if you have any
Speaker:
01:17:41,099 --> 01:17:45,701
thoughts on things that you find helpful
or maybe refer to your clients or things
Speaker:
01:17:45,701 --> 01:17:46,521
like that.
Speaker:
01:17:58,478 --> 01:17:59,838
So I have a couple.
Speaker:
01:18:00,718 --> 01:18:06,640
The first one is in the adoption
community, and these are Ontario
Speaker:
01:18:06,640 --> 01:18:10,201
resources, but they're on the web, so
they're accessible to anybody.
Speaker:
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
Speaker:
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
Speaker:
01:18:19,564 --> 01:18:20,445
fair bias.
Speaker:
01:18:20,445 --> 01:18:23,485
I think they're a great organization and a
good resource.
Speaker:
01:18:23,598 --> 01:18:30,841
Tons of online information, webinars,
education experiences, lots of free
Speaker:
01:18:30,841 --> 01:18:37,563
resources on understanding adoption,
trauma, prenatal exposure, neurodiversity,
Speaker:
01:18:37,563 --> 01:18:39,084
tons and tons and tons.
Speaker:
01:18:39,084 --> 01:18:40,784
So that's at adoption.on.ca.
Speaker:
01:18:43,686 --> 01:18:51,129
For parent support around adoption, Adopt
for Life, so it's adopt, the number four,
Speaker:
01:18:51,129 --> 01:18:52,369
life.com.
Speaker:
01:18:53,866 --> 01:19:02,233
offering parent support and information,
parent support groups, just really tons of
Speaker:
01:19:02,233 --> 01:19:07,398
great information around that support area
around parenting kids who are on
Speaker:
01:19:07,398 --> 01:19:09,939
permanency journeys who are adopted.
Speaker:
01:19:11,241 --> 01:19:16,245
Another shameless plug for an organization
that's close to my heart is the Rural FASD
Speaker:
01:19:16,245 --> 01:19:17,165
Network.
Speaker:
01:19:18,270 --> 01:19:22,314
Once again, that's the network I was
talking about that started from a group of
Speaker:
01:19:22,314 --> 01:19:28,961
parents around a kitchen table saying, we
need more and created this amazing
Speaker:
01:19:28,961 --> 01:19:33,826
resource that has an online presence as
well as an in-person presence.
Speaker:
01:19:34,127 --> 01:19:37,089
So a really, really great resource.
Speaker:
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
Speaker:
01:19:42,411 --> 01:19:46,632
have questions They heard something that
I've spoken about on this podcast They
Speaker:
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
Speaker:
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
Speaker:
01:20:01,657 --> 01:20:04,578
or give some more info about things
Speaker:
01:20:04,578 --> 01:20:07,959
There are tons and tons and tons of
resources.
Speaker:
01:20:08,919 --> 01:20:14,722
Most of them will be listed on the
adoption.on.ca and they're not just
Speaker:
01:20:14,722 --> 01:20:15,882
adoption resources.
Speaker:
01:20:15,882 --> 01:20:22,065
So they're about parenting kids who are
neurodiverse around dealing with trauma,
Speaker:
01:20:22,065 --> 01:20:28,167
around talking to kids about difficult
things, tons of resources on that site.
Speaker:
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...
Speaker:
01:20:33,082 --> 01:20:34,371
have it all in one place too.
Speaker:
01:20:34,371 --> 01:20:38,122
encourage people to connect in with me if
they have specific needs, and I'll try
Speaker:
01:20:38,122 --> 01:20:40,849
hard to direct them to resources.
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01:20:45,406 --> 01:20:46,068
Yeah.
Speaker:
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
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01:20:54,494 --> 01:21:00,257
four hours long, we ask all of our guests
if you were going to dominate a
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01:21:00,257 --> 01:21:01,898
category...
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01:21:01,898 --> 01:21:03,158
I'm going to start over.
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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,
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01:21:07,701 --> 01:21:08,641
what would it be?
Speaker:
01:21:08,641 --> 01:21:11,822
And categories can be real or made up to
ensure that you win.
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01:21:14,014 --> 01:21:16,256
I was going to dominate a category.
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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
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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
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01:21:26,126 --> 01:21:32,933
would beat the merry-go-round writing,
longest writing kind of, and I could sit
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01:21:32,933 --> 01:21:36,098
on it for hours and hours and hours and
not have to leave.
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01:21:36,098 --> 01:21:39,442
because I could last probably a few
minutes and then start to feel nauseous,
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01:21:39,442 --> 01:21:41,444
so I would not compete with you at all.
Speaker:
01:21:41,444 --> 01:21:45,168
I'd be like, you get that category, for
sure.
Speaker:
01:21:46,550 --> 01:21:47,671
Yeah, that's right.
Speaker:
01:21:47,932 --> 01:21:49,653
Are you a right person, Katie?
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01:21:55,186 --> 01:21:56,947
Alright, I win, I win!
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01:21:58,471 --> 01:21:59,631
I am just...
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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
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01:22:07,453 --> 01:22:08,813
without telling me.
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01:22:09,354 --> 01:22:11,714
I love the Tilt-A-Whirl.
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01:22:11,774 --> 01:22:16,956
And the girl child also, anything with
that centrifugal force, we are here for
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01:22:16,956 --> 01:22:17,656
it.
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01:22:18,656 --> 01:22:22,657
Yeah, weighted blankets, Tilt-A-Whirl, all
of it.
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01:22:22,717 --> 01:22:23,757
Love it.
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01:22:23,958 --> 01:22:26,738
Anything upside down.
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01:22:27,859 --> 01:22:28,439
No.
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01:22:28,439 --> 01:22:31,600
Hard no on anything up in the air.
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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.
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01:22:37,182 --> 01:22:40,683
Although I can say that drinking a fair
amount of beer and then getting on the
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01:22:40,683 --> 01:22:42,524
Gravitron, bad idea.
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01:22:42,524 --> 01:22:46,065
I'm pretty sure it forces the alcohol
through your liver faster.
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01:22:46,205 --> 01:22:47,985
Worst hangover I've ever had.
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01:22:48,266 --> 01:22:50,406
Bad, bad choice.
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01:22:50,766 --> 01:22:51,384
Yeah.
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01:22:51,384 --> 01:22:54,307
or send us an email and we will read it
out for you.
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01:22:54,428 --> 01:22:58,493
Katie, have you got something to cuss and
discuss or cuss or discuss this week?
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01:23:09,151 --> 01:23:11,632
I do Arlene and it's kind of a two-parter.
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01:23:11,853 --> 01:23:14,975
One, I really hate when you're...
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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
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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
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01:23:24,643 --> 01:23:27,365
someone else with a negative opinion of
you.
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01:23:27,826 --> 01:23:37,414
And the second part of the same cussing
and discussing is the tremendous lack of
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01:23:37,414 --> 01:23:37,934
a...
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01:23:38,955 --> 01:23:48,018
commonly used singular gender neutral way
to refer to other humans.
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01:23:49,279 --> 01:23:55,962
My daughter was corrected by a server at a
restaurant this weekend as to that
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01:23:55,962 --> 01:23:59,783
person's preferred pronouns, which is
absolutely fine with me.
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01:23:59,783 --> 01:24:01,144
I appreciate that they did it.
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01:24:01,144 --> 01:24:06,886
I really appreciate the level of
vulnerability
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01:24:07,779 --> 01:24:09,039
put him in.
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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
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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
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01:24:20,587 --> 01:24:26,451
pronouns at all, because I try pretty hard
not to in general, because I think
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01:24:26,451 --> 01:24:28,672
gendered pronouns are kind of bullshit.
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01:24:28,893 --> 01:24:36,198
And especially with folks where my first
perception of who I might think they
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01:24:36,198 --> 01:24:36,878
are...
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01:24:37,783 --> 01:24:43,587
may or may not match how they identify
themselves, and as I tell our children, we
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01:24:43,587 --> 01:24:46,509
believe what people tell us about who they
are.
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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
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01:24:51,413 --> 01:24:56,316
corn, they identify in a way we don't
understand or that we might not
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01:24:56,316 --> 01:25:00,999
immediately jump to, I'm going to trust
what you say about yourself.
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01:25:01,360 --> 01:25:05,702
But the fact that there is not
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01:25:05,847 --> 01:25:11,051
good way to refer to people that is not
gendered in a singular way.
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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
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01:25:19,278 --> 01:25:22,401
gender-neutral singular pronoun, and there
should be.
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01:25:22,401 --> 01:25:23,401
Not a pronoun.
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01:25:24,142 --> 01:25:25,863
A way to refer to other humans.
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01:25:26,364 --> 01:25:28,906
That doesn't sound like hello, fellow
human!
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01:25:28,906 --> 01:25:30,127
Who is a human?
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01:25:30,127 --> 01:25:31,388
Just humaning.
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01:25:31,809 --> 01:25:32,509
Yes.
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01:25:32,509 --> 01:25:34,090
Greetings, human!
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01:25:34,143 --> 01:25:35,704
Maybe I'll just go with that.
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01:25:36,525 --> 01:25:40,550
Anyway, so if any of our listeners have
suggestions, I really would love to hear
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01:25:40,550 --> 01:25:42,332
them.
Speaker:
01:25:42,332 --> 01:25:44,794
Karen, what would you like to custom
discuss today?
Speaker:
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
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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
Speaker:
01:26:05,498 --> 01:26:09,240
reactions make me or them feel like we're
not.
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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.
Speaker:
01:26:15,975 --> 01:26:21,158
going through 10 minutes ago or a year ago
or how far we've come.
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01:26:21,879 --> 01:26:27,703
I think that, I think, you know, thinking
about how we can manage that better maybe,
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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
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01:26:35,929 --> 01:26:40,592
really affects a lot of us and it
shouldn't, it shouldn't take that power
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01:26:40,592 --> 01:26:41,232
away from us.
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01:26:41,232 --> 01:26:44,176
So I think that would be what I would say.
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01:26:44,176 --> 01:26:48,417
in terms of systems, there's obviously
lots to improve, but I think especially in
Speaker:
01:26:48,417 --> 01:26:55,959
rural places, one area that I know our
family has struggled is in finding
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01:26:55,959 --> 01:27:01,601
recreational opportunities that work for
our neurodiverse kids.
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01:27:01,841 --> 01:27:02,418
And
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01:27:02,418 --> 01:27:06,124
I'm not blaming the people who run the
programs because especially in rural
Speaker:
01:27:06,124 --> 01:27:09,990
places it's mostly volunteers and it's
hard to get volunteers at all.
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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,
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01:27:16,648 --> 01:27:22,471
that they're running programs that work
for them or that, you know, they're
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01:27:22,471 --> 01:27:24,872
following a structure that's been set out
for them.
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01:27:24,872 --> 01:27:26,713
And so that's what's going to work.
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01:27:26,713 --> 01:27:31,155
And there aren't the same options, you
know, just based on geography and the
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01:27:31,155 --> 01:27:33,436
number of people who live in the places we
live.
Speaker:
01:27:33,436 --> 01:27:38,178
So some of the things that might work
better for our kids that get offered in
Speaker:
01:27:38,178 --> 01:27:40,499
urban areas don't end up where we
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01:27:41,520 --> 01:27:45,472
the things that are here don't always fit.
Speaker:
01:27:45,472 --> 01:27:47,517
So then it means that.
Speaker:
01:27:48,226 --> 01:27:51,527
that some of our kids miss out, which is
really, really difficult.
Speaker:
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
Speaker:
01:27:57,850 --> 01:28:00,451
start a thing or run a program.
Speaker:
01:28:00,471 --> 01:28:04,573
When you're in the trenches and just
trying to figure things out for your
Speaker:
01:28:04,573 --> 01:28:09,716
family to try and start something new
might not be something that you can do
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01:28:09,716 --> 01:28:10,136
right now.
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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
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01:28:15,558 --> 01:28:18,340
think that's maybe something I could do
something about on a bigger scale.
Speaker:
01:28:18,340 --> 01:28:23,153
but right now it's just something I'm
gonna cuss about.
Speaker:
01:28:26,698 --> 01:28:31,315
I don't know if you've had similar
experiences, Karen, with that side of
Speaker:
01:28:31,658 --> 01:28:32,440
life.
Speaker:
01:28:43,731 --> 01:28:49,275
Absolutely, or the, you know, and I get
it, I understand it, but the idea that,
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01:28:49,275 --> 01:28:57,722
you know, child can participate if parent
attends and that idea of, oh, yes, you
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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
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01:29:04,048 --> 01:29:04,748
this.
Speaker:
01:29:04,748 --> 01:29:11,134
And, but, you know, making it work and,
but sometimes just wishing that I also
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01:29:11,134 --> 01:29:12,474
could have the hour.
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01:29:12,551 --> 01:29:15,833
to myself that the other parents are
having.
Speaker:
01:29:15,833 --> 01:29:20,537
And yeah, when my kids were younger
sometimes, or the school trips, right?
Speaker:
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
Speaker:
01:29:24,940 --> 01:29:28,550
them or you send somebody, you know, it's
hard, can be hard.
Speaker:
01:29:28,550 --> 01:29:30,553
already gave us where people can find you.
Speaker:
01:29:30,553 --> 01:29:32,075
So we're good on that end.
Speaker:
01:29:32,075 --> 01:29:35,879
But thank you so much for being with us
and for having this discussion with it.
Speaker:
01:29:35,879 --> 01:29:37,561
We both really appreciate it.
Speaker:
01:29:48,595 --> 01:29:49,476
My absolute pleasure.
Speaker:
01:29:49,476 --> 01:29:51,020
It was a lovely conversation.
Speaker:
01:29:51,020 --> 01:29:52,582
Thanks for the opportunity.
Speaker:
01:29:52,739 --> 01:29:53,971
Thanks so much, Karen.