Latest / Barnyard Language / Off grid and off script with LSW Karen Moore

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Off grid and off script with LSW Karen Moore · Barnyard Language

• 0:03
  We are welcoming to the episode Karen Moore, who is from Eastern Ontario, just
• 0:07
  like I am.
• 0:08
  And Karen, we start each of our interviews with the same questions.
• 0:11
  So this is a way to introduce yourself to our listeners.
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  And we always ask, what are you growing?
• 0:15
  So for our farming guests, that covers crops and livestock, but it can also
• 0:18
  include families, careers, businesses, social change, awareness, anything.
• 0:23
  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.
• 5:24
  Sorry, I muted myself and then I couldn't get unmuted again.
• 5:28
  So Karen, we're talking to you today because of your expertise, both
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  professionally and personally, with neurodiversity and your work with children
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  and families.
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  Can you tell us, in your own words, about your background and your work and such?
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  Sure.
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  So I'm a registered social worker and I have a private practice here in Eastern
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  Ontario working primarily with families who are walking the journey of
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  neurodiversity and or adoption and permanency.
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  So one or the other or both.
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  So I do a lot of work with children, youth and families where
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  the initials of FASD, ASD, ADHD, all of those labels and initials come dancing
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  through the journey.
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  And we have a lot of those initials in our family life as well.
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  So I dance that dance professionally and personally.
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  And a lot of work in really thinking about
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  What does neurodiversity mean and the impact of neurodiversity on individual
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  lives as well as family lives and really trying to navigate some of the
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  complexities that I would say sometimes often don't need to be there, but they get
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  created because we often have a kind of narrow sense of what neuro-normative is.
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  And if we had, if we would actually just expand our sense of neuro-normative, a lot
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  of the barriers and a lot of the challenges wouldn't exist.
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  And in fact, I could be unemployed and I would love that.
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  I mean, I would obviously move on to a different level of employment and do
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  something else, but I would love to not have to be helping people navigate some of
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  the complexities that are
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  kind of put in the way of children, youth, and families because of the way that we
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  perceive neuro-normative reality.
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  I think the reality is everything is neuro-normative and we have created these
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  social constructions around what's diverse and what's not and what's acceptable and
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  what's not.
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  And it's those human creations of those labels that actually create the
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  difficulty.
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  Yeah, I'm absorbing all of that.
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  Well, I'm thinking, so you shared, your four children are all adopted and they had
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  various journeys themselves.
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  Can you tell us, without getting too personal into their own experiences, but
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  as a parent, how did you navigate those journeys, both kind of individually and
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  separately, because I'm sure that they all impacted each other, and like the family
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  as a unit.
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  Mm-hmm.
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  Yeah, I'd like to say we navigated them brilliantly every single time, and I can't
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  even say that with a straight face.
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  Exactly, and I think that makes it more difficult sometimes, right?
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  Because I think that there's an added pressure that I put on myself and that
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  systems put on me that if I'm a professional doing this work that
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  I must have it all figured out when it comes to my own journey and my journey
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  with my kids and that's far from the truth.
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  My kids have been my best teachers actually.
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  But we've navigated difficulties with doctors, with schools, with recreation
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  programs, with family expectations, with our own expectations.
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  We've navigated parenting dilemmas and strategies around.
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  you know, do we consequence more?
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  Do we consequence less?
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  Do we, you know, do we take things away to change behavior?
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  Do we, all of those kinds of messages that we got like everybody else did around, you
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  know, this is how you parent a child who is neurodiverse.
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  You do more of this, you do less of this, you, you know, add this, you subtract
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  this, you just need to be more consistent.
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  You just need to be more, you know, open.
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  You just need.
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  there was always you just need to be more of or you just need to do less of or and
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  So, you know those dilemmas and they still follow because each child is different
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  Like you said Arlene, right?
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  and so what worked for one child isn't gonna work for the our next child and
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  isn't gonna and What works for child one on Monday might not work for child one on
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  Monday afternoon Hey, like it worked Monday morning, but it's so
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  I think that, you know, came to a learning of the fact that what really mattered in
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  all of this, and I speak about this often in the adoption work that I do and the
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  work that I do with families and in my own journey as a parent, is that what really
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  matters at the end of the day is the relationship.
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  And I'm always now looking at that being my guide to.
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  decisions, interventions, strategies.
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  At the end of the day, will this add to my relationship with my child or will this
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  take away?
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  And my favorite saying, my partner and I are favorite saying is five years from now
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  is this gonna matter?
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  A year from now is this gonna matter?
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  And if it is gonna matter, then what do we need to do to ensure that this is going to
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  matter well?
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  And if it's not gonna matter a year from now, why?
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  why are we invested in this?
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  Why, you know, is it peer pressure?
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  Is it pressure from family?
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  Is it pressure from the school?
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  Is it pressure from wherever?
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  And really being able to use that as our touchstone around the relationship with
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  each and every one of our kids is what matters the most.
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  And that's what we're gonna use.
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  That relationship is what's gonna keep us going in the tough times.
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  And it's also gonna be what keeps us going in the easy times or in the good times,
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  right?
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  And so really kind of thinking about, when we're trying to come up with a strategy,
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  when we're trying to come up with a next step, when we're trying to figure out what
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  the hell do we do now, what's the impact gonna be on this relationship?
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  And that served us well, it served us well.
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  And it has given us the opportunity, I think sometimes,
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  to kind of sit back a little bit and give some time for reflection.
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  There's very few things that we've learned that need immediate response.
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  Of course, safety issues do.
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  Issues around life and death, absolutely.
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  There's an immediate response there needed.
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  Issues related to the fact that one of our kids has done something they weren't
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  supposed to do or they haven't done something they were supposed to do.
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  That doesn't need an immediate response.
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  That can give us a time to reflect, think about who they are, think about who they
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  are in this interaction, who we are, and what do we want to move forward so that
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  our relationship remains intact and we move forward from a place of connection.
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  So it's an important piece, I think.
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  really important.
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  And I agree with what you're saying, that sometimes those outside pressures end up
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  creating a sense of urgency that isn't there, right?
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  Where if you have a teacher who is only teaching your child this year, they wanna
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  see results within, you know, this time period before the next report card, before
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  the test, all that kind of stuff, or, you know, whatever the situation may be.
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  But you're right, sometimes our responses are gonna be...
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  things that take longer or that aren't gonna show an impact for a long time.
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  So thinking about things in that more long-term connection type journey is
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  really important whether our kids are neurodiverse or not.
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  Yep.
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  So, Karen, I just added a question here, and I hate the wording I'm about to use,
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  but I couldn't really come up with anything better.
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  Because all four of your kids are adopted, how much warning did you have about the
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  likelihood of them being neurodiverse, especially knowing that they were all
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  young when they came into your family?
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  You know, I mean, it...
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  It seems like adopting older kids you tend to get more warning.
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  But...
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  Even with older kids, we sometimes minimize the potential.
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  I mean, I think the reality is adoption is trauma, right?
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  And so whether or not a child is adopted at one day old or a year old or five years
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  old, the fact that they are going through an adoption journey means that they've
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  experienced a trauma and will continue to experience that trauma for the rest of
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  their lives.
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  It doesn't mean that trauma always has to be traumatizing.
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  It does though mean that the reality is they will always be adopted and that will
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  have impact in different parts of their lives.
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  So I think, you know, I think as an adoption community, and it may be
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  different in different, you know, different provinces, different countries.
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  As an adoption community, I think we're working hard to be more upfront and honest
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  about the fact that we often don't really know about kids' beginnings, right,
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  there's often huge gaps.
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  And some of that can be minimized with people taking, you know, more knowledge
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  and thought about how to document things and keep track of things.
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  But some of those things aren't known, right?
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  Like if, for example,
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  the child comes into care at the age of five or seven or eight, there might be
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  years and years and years of experience that we don't know about, especially in
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  including prenatal experiences, right?
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  So when we're talking about FASD, which is a particular interest in area of expertise
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  for me, although I use the word expertise in a very light way because I don't
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  consider myself an expert at all.
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  When I say expertise, it's that place of
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  of curiosity and passion about enlightening the world about the realities
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  of fetal alcohol spectrum disorder and the way that we can absolutely change
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  trajectories if we clue in quicker sometimes.
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  And if we, you know.
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  And if we have some of these honest conversations and look at some of the
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  barriers that make it difficult to be able to have some of these conversations.
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  So I think for our kids, we got as much information as was known, but I think
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  there was much more information that could have been known.
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  And there were, you know, lots more places where certainly, I mean, we adopted our
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  kids
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  20 plus years ago, well, 15, 20 years ago.
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  And even the concept of adoption being trauma or the idea of kids, even that idea
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  that kids have a life before.
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  We often, I think in the adoption community used to kind of think once kids
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  were adopted, it was almost like they had a new beginning, a new start.
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  And I think
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  I'm so glad to say we're much more enlightened about that now and recognize
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  that it's one person, one life, one journey, and that it's about addition, not
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  subtraction, right?
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  It's not about a new beginning when a child moves into adoption.
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  It's a continuation of a journey.
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  And I think we still need to do a lot better in knowing and sharing and talking
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  about the histories of the possibilities of the realities of.
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  the impact of trauma and adoption on children, youth and adults.
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  still my question, isn't it?
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  I just added a whole bunch of questions in here.
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  So now none of my questions make any sense in the order they're in.
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  That sounds like my life.
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  Well, I feel like I'm gonna move one of these questions up and see if that helps
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  things.
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  So, as someone who...my own neurodiversity was diagnosed at the age of 40, and
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  realistically it's been a part of who I am forever.
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  But, you know, it was one of those doesn't perform to expectations sort of things.
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  crucial parts of who we are as adults, and especially for women, there's been such an
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  explosion in the last few years of people who are reaching a place where we're
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  completely redefining what we know to be true about ourselves.
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  And especially trying to raise children when you're learning so much about
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  yourself at the same time is really
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  really strange.
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  So I'm wondering what your thoughts are on that, I guess.
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  So I think I have a couple of thoughts as I hear you speak.
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  I think the first one is, I honestly believe that our children know the truth
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  about their identity.
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  They know who they are, and oftentimes adults, systems, et cetera, don't
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  recognize that truth or try to convince them of a different truth.
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  And so I think that when adults get diagnosed,
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  you know, as adults with a neurodiversity.
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  It's not this thing that comes out of nowhere.
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  It's this recognition of a truth that has always been but was never honored.
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  And it was always trying to be packaged in a different way, in a way that the adults
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  around could.
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  explain it or understand it, sometimes from a limited understanding of what the
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  possibilities could be, right?
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  So especially, like you said, for girls and women, the idea of neurodiversity is
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  often missed, right?
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  Or we come up with other ways of trying to understand those behaviors and those
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  existences.
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  I think it...
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  I think that's why I'm so passionate about the fact that I really want us to
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  understand and really see kids for who they are because we have that identity
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  formation all the way along, right?
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  From the time we're born, we start to create through all of those different
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  child development stages a sense of who our identity is.
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  And if we find out at the age of 15 or the age of 18 or the age of 20 or 30 or 40 or
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  that there's a significant part of our identity that we didn't know or that
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  wasn't acknowledged.
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  We have to kind of do some backtracking, right?
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  We kind of have to go through those identity formation stages again.
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  And if you will get to know ourselves from this new place of truth.
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  It's a similar journey when, you know, I'm working with families around the adoption
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  piece and they're saying, you know, we haven't told our kids they're adopted.
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  and they may be teenagers, young adults at this point.
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  And my first thing to say to them is somewhere in your child's sense of who
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  they are, they know that they're adopted.
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  They have that in their DNA, right?
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  And so I guess my long-winded answer is I always hope that we can...
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  help people understand their truth as soon as possible so that we don't have people
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  trying to re-understand themselves, you know, 20, 30, 40 years into their lives
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  with this new lens.
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  And I really wanna repeat again that I don't think the lens is new to them
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  necessarily.
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  I think it's this way that society or that...
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  the world has been able to translate them.
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  I think people know their truth and they often get silenced in that truth and
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  saying no, that's not who you know the reason you're acting like this is because
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  of this and we come up with other explanations other than the truth.
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  And so understanding neurodiversity being able to you know
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  And this comes to one of your other questions.
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  So I'm going to jump to it.
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  And sorry for that, that I'm jumping to your question, but that idea of labels,
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  right?
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  Labels can be misused and they can be things that people use to hurt people that
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  belongs to the person trying to hurt a label that helps us understand and honor.
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  I want us to create a world where people feel honor about having a
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  you know, ASD or FASD.
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  I don't want people to feel and think that because I have FASD, that means there's
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  something wrong with me.
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  I want there to be a world where people say, I have FASD.
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  That's so that you can help understand better how I experience the world.
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  So for me, the difficulty with labels doesn't come with the label.
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  And it doesn't come with the fact that label explains things.
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  It comes with the misinformation, the difficulty, the hatred sometimes of people
• 24:24
  who are using that label.
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  Um, and, uh, yeah, so I don't know if I answered that question.
• 24:32
  I kind of went on a rampage there.
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  I hope I answered your question.
• 24:36
  because...
• 24:37
  Sorry, go ahead, Kitty.
• 24:40
  I feel like for some folks it's really swung in the opposite direction now that
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  we see, you know, autism is a superpower and I am, for example for myself, I am
• 24:54
  very good at my job in large part because of the way my brain works, but to say it's
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  a superpower is also so...
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  it's just as reductive as saying that the way my brain works is a huge problem
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  because
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  it does make me very good at some things, but I don't know that I'm gonna call being
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  late either 20 minutes early out of anxiety or late for basically everything
• 25:22
  ever to really be a superpower, you know, and that it's just as reductive to see it
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  in this toxic positivity kind of way.
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  But at the same time
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  trying not to cure people of something that is not wrong with them.
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  You know, there's nothing wrong with the way my brain works, it just doesn't always
• 25:51
  work in a way that is the easiest to deal with the way that society thinks that it
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  should be working.
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  But...
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  it can be a real...
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  it's gone so far in the other direction too that it's, you know, it's such a
• 26:11
  superpower and that doesn't seem to be something you hear from anyone who is
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  neurodiverse it seems to just be a over acceptance perhaps from other folks
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  And I think we see that often, right, where the pendulum swings from one extreme
• 26:31
  to the other.
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  And I think, you know, when we're talking about spectrums, I think really what we
• 26:40
  really want to do is honor the whole spectrum, right, and not one extreme to
• 26:44
  the other.
• 26:45
  Bad, good, superpower, deficit, all of these extremes, I think are meant to,
• 26:54
  they're meant to divide,
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  When in reality, I think it's that piece of we all have brains, all of our brains
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  work differently, and that we need to kind of challenge the social construction that
• 27:09
  we've come up with around valuing some brains more than others, or some skills
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  more than others, and really see holistically that all brains have values,
• 27:21
  all people have value, and rather than trying to divide ourselves.
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  So.
• 27:27
  Yeah, I think the pendulum does often swing, you know, we see that in many in
• 27:32
  many cases And I'm not sure pendulum swings to either extreme or helpful
• 27:38
  I wonder too how much of that comes from medicalizing neurodiversity that it's...
• 27:46
  You know, I mean, if you're diabetic, basically you are diabetic or you're not
• 27:51
  diabetic.
• 27:51
  Like, there's not a lot of spectrum in there.
• 27:55
  Or you have cancer, you don't have cancer.
• 27:58
  That's a pretty, like, this or that thing where...
• 28:03
  being neurodiverse is a huge range of all sorts of things and no two people are
• 28:10
  neurodiverse in the same way, where two people can be diabetic in more or less the
• 28:16
  same way.
• 28:17
  And so I wonder how much of it is just that medicine is not a great approach for
• 28:26
  the basics of how brains work.
• 28:31
  from a healthy brain standpoint, I guess.
• 28:35
  And now I'm just totally off, totally off into...
• 28:40
  Oh well, people know to expect it by now.
• 28:44
  If this is the first episode you've listened to, apologies, this is basically
• 28:47
  what it's like.
• 28:48
  So now I'm gonna let Arlene ask her questions so that we can get back on
• 28:51
  track.
• 28:56
  So we've already been talking about labels and Katie, I don't think you're off base.
• 29:01
  I get where you're coming from.
• 29:02
  So I know that I've heard some people say they don't wanna label their kids and I
• 29:06
  really love what you're saying about people knowing who they are, whether or
• 29:10
  not they've gotten that news or diagnosis or all of the context that they need.
• 29:17
  they understand themselves, but maybe can't always explain it to other people or
• 29:22
  it doesn't maybe make sense for them in society potentially, or like you said, the
• 29:28
  way the world sometimes works.
• 29:30
  So some people say they don't wanna seek diagnosis because then their kid will get
• 29:35
  labeled in that negative sense, right?
• 29:37
  And so they might be concerned that seeking diagnosis means that they're
• 29:42
  actually limiting their child.
• 29:44
  And I was wondering what your thoughts were
• 29:48
  testing, diagnosis, that kind of stuff, or if you feel like your child has some
• 29:54
  differences that maybe you don't understand and are starting the process of
• 29:58
  looking for support, like where do you even start and what do you feel has value
• 30:04
  in that process?
• 30:05
  Like how can parents seek the support that they need, both as parents and for their
• 30:11
  kids to learn how to understand themselves better?
• 30:19
  So I think that the concept of labels comes, and it kind of comes back to that
• 30:24
  medicalization piece, where we need the label to access the service, or most
• 30:28
  services.
• 30:29
  Although I think services are getting better at not needing labels.
• 30:36
  And I think that it still comes back to that place of the label itself is not the
• 30:44
  problem.
• 30:46
  in my opinion.
• 30:46
  In my opinion, it is the baggage that comes along with some of those labels and
• 30:52
  the assumptions and the, you know, the discourse that comes with some of those
• 30:57
  pieces.
• 31:00
  And I think what we really want is for children, youth and adults for that matter
• 31:05
  to feel a sense of pride and a sense of wholeness in who they are.
• 31:13
  So I think, I do think it's individual.
• 31:16
  I think, you know, different kids have different needs and expectations about
• 31:20
  that.
• 31:20
  Some kids, it really helps them to have meaning, if you will, externalized
• 31:27
  meaning, to make sense of their behaviors or their needs, or, you know, why, for
• 31:32
  example, you know, for one of my kids, they could never walk into a birthday
• 31:38
  party if it had already started.
• 31:41
  They needed to be there first.
• 31:43
  They needed to kind of get grounded.
• 31:46
  They needed to kind of get a sense of the space before, if you will, all hell broke
• 31:50
  loose, right?
• 31:51
  And the sensory input and the sounds and the people and the movement and the, and
• 31:59
  when we were able to put meaning to that, and we put meaning to it from a place of
• 32:05
  saying, this is just how your brain works, right?
• 32:08
  Your brain needs to
• 32:10
  feel a sense of peace and anchoring in a new space before you then have to interact
• 32:18
  with tons of other people.
• 32:20
  Your brain just likes a chance to, you know, kind of chill for a little bit.
• 32:26
  And for you to walk into a room that's already all happening, your brain then
• 32:31
  doesn't get the chance it needs to settle to then be the best that it can be.
• 32:37
  So.
• 32:38
  Being able to provide meaning to that, whether or not we use the label or not, I
• 32:44
  think it's the meaning making that makes the difference.
• 32:47
  I think the labels, unfortunately, fortunately, I think there's a debate on
• 32:54
  both sides, the labels are what help us access the services, right?
• 32:58
  So they help us access the funding.
• 33:00
  They help us access, you know, whether it's respite services or speech services
• 33:05
  or without the label.
• 33:08
  you're not going to easily access some of those funding services or even services in
• 33:13
  the education system right around like in the Ontario system that IEP IPRC process
• 33:19
  of being able to be noted with, you know, having exceptionalities, which is a word I
• 33:26
  have a problem with as well.
• 33:28
  I think, you know, realistically, and not that I have the power to change the
• 33:33
  system, but if I did.
• 33:35
  I would love every student to have an IEP.
• 33:39
  I would love the IEP process to be a process attached to student wellness and
• 33:45
  student learning and success for every student, not just students who are seen as
• 33:51
  having exceptionalities.
• 33:53
  So that's why I continue to do the advocacy work I do so that I can change
• 33:58
  the system so that every child can get an IEP.
• 34:02
  Until then, you know.
• 34:05
  having those labels per se, those diagnoses, make the journey easier to get
• 34:11
  some of those things that make the playing field equal.
• 34:20
  So, you know, for, like I said, for one of my kids, where sensory issues are really
• 34:27
  significant,
• 34:29
  for them to walk into a classroom of 30 kids is huge for them.
• 34:34
  It takes so much energy.
• 34:36
  And the child beside them, whose brain doesn't work like that, they don't have to
• 34:40
  use any of their brain power to walk into that classroom, right?
• 34:45
  It doesn't mean that child's brain is better than this child's brain.
• 34:49
  It means we have two brains who process environment and information differently.
• 34:53
  That's all it means.
• 34:55
  And because the environment
• 34:57
  that we're asking a child to be in is a room full of 30 other people, we need to
• 35:04
  adapt that environment for that brain to work.
• 35:07
  If the environment that we constructed is a room with three other people.
• 35:13
  we wouldn't need to adapt the environment for the brain, right?
• 35:16
  So it all comes down to the fact that it's not about individual people's brains and
• 35:22
  their neurodiversity per se, it's about the systems and the way we've created
• 35:27
  environments that adaptations need to be made because of the way that the systems
• 35:32
  are there.
• 35:32
  So the labels help access service, they help with the advocacy, they help with the
• 35:40
  shared language sometimes.
• 35:43
  Um, there's still room for people, you know, as you said earlier, right?
• 35:49
  Not one person with neurodiversity presents in the same way.
• 35:52
  Neurodiversity is neurodiverse, diverse, right?
• 35:57
  And so a label of ASD or a label of FASD gives you, you know, a sense of a, of a
• 36:06
  community of realities.
• 36:08
  It does not tell you.
• 36:10
  who child A is because they have FASD.
• 36:14
  It gives you a sense of child A may have, you know, a menu of 500 different
• 36:22
  realities from child B and you as the adult in that system, whether you are the
• 36:28
  parent, the teacher, the coach, the doctor, need to then step up.
• 36:36
  and be able to be curious about what does FASD look like for this particular child
• 36:43
  right now.
• 36:45
  And know enough about neurodiversity to know that doesn't mean that might not be
• 36:51
  who that child presents and is tomorrow based on, you know, the environment, based
• 36:58
  on how well they slept last night, based on, you know, if they have some trauma
• 37:02
  triggers about something, right?
• 37:05
  So I think the labels help to cue or should help to cue other people that
• 37:14
  there's a need for curiosity from a place of kindness and care, not curiosity from a
• 37:21
  place of hatred or gawking or like that negative curiosity, but a place of
• 37:30
  curiosity be able to say
• 37:33
  I need to really, I need to work hard to know who you are, not because of the
• 37:38
  label, but I need to work hard to know who you are because you're another human being
• 37:42
  and I should be doing that with everybody.
• 37:44
  The label just helps me to cue that I need to do this a little differently possibly.
• 37:50
  Karen, I love that idea of all children having IEPs or even all people just having
• 37:59
  some sort of individual human program where we would just have this because kids
• 38:08
  can be a pain in the ass.
• 38:09
  All humans can be a pain in the ass.
• 38:11
  That's just the way they are.
• 38:13
  But if it gives somebody a heads up that maybe my kid or myself has...
• 38:19
  a reason for being difficult that isn't just that there are pain in the ass, that
• 38:25
  maybe that clock ticking is legitimately impacting whether my kid can listen to
• 38:31
  something, or whether I myself can listen to something, and how much that is
• 38:39
  informed by what we're interacting with.
• 38:43
  I work in software.
• 38:45
  Probably half of my coworkers are neurodiverse if we really got down to it.
• 38:50
  I work remotely.
• 38:53
  For me, having a diagnosis of every part of how my brain works really doesn't
• 38:59
  matter because I'm in control of my own life and nobody cares.
• 39:04
  But for my five-year-old, you know, where the risk of them being labeled is
• 39:10
  difficult or non-compliant or doesn't work up to expectations or whatever else can be
• 39:19
  very different But I'm wondering as in your diverse adult How do I know if my kid
• 39:28
  needs?
• 39:31
  more exploration of how their brain works or if they're just weird?
• 39:38
  Does that make sense?
• 39:40
  My one kid is very focused on their interests and does not like loud noises
• 39:46
  and does not like flashing lights and all this, but how do I know if this is...
• 39:52
  something that needs more understanding and support or if I just say, yeah, my kid
• 39:58
  doesn't like loud noises.
• 39:59
  And does it matter one way or the other, I guess.
• 40:04
  I think it's a great question and I think it's a question that parents ask
• 40:07
  themselves all the time, right, around do we need to go further with this?
• 40:12
  Do we need to get some help with this?
• 40:14
  Do we not need to?
• 40:16
  And I think there's no right answer, but I think the place where I land on this often
• 40:21
  is a place of are these pieces of them interacting in their ability to lead the
• 40:29
  best life they can lead?
• 40:32
  And if they are...
• 40:34
  then I lean to the point of maybe we need to get some more information here to see
• 40:38
  if we can minimize the difficulty this is having on their lives.
• 40:44
  If it's not, then I'm like, I got no problem here to solve, right?
• 40:48
  Like, yeah, loud noises really bother them, okay?
• 40:54
  And, you know, I personally don't like
• 41:03
  I'm not saying it to minimize the impact of the loud noises.
• 41:06
  I'm saying it as a way of saying that we all have things that we don't like, that
• 41:13
  are difficult, and we need to make some decisions about whether those difficulties
• 41:18
  impact our life to a point where they're affecting our ability to live our best
• 41:23
  lives, beyond our ability to problem solve it.
• 41:28
  So I will use my ridiculous example of not liking corn.
• 41:33
  to, you know, I can use my skills to manage that, right?
• 41:37
  In a restaurant, I don't order corn.
• 41:39
  I don't buy it at the grocery store.
• 41:41
  If I'm at a friend's house and they serve it, I eat what else is on the plate.
• 41:45
  I can use my skillset.
• 41:48
  I can use the ability I have to problem solve to minimize that need, that impact
• 41:56
  on my life, right?
• 41:58
  If...
• 41:59
  you know, my friend, you know, were to say to me, every time I serve you food, you
• 42:04
  don't eat it.
• 42:04
  And it's really upsetting me.
• 42:06
  And, you know, I'm taking it personally.
• 42:09
  And I don't think you're a very good friend.
• 42:12
  And I don't know how to problem solve that and manage that and have that conversation
• 42:16
  with her to say it's not about your cooking.
• 42:18
  It's that I don't like corn.
• 42:21
  Then maybe
• 42:22
  I need to be looking at how I can come up with some different strategies, some
• 42:26
  different ways of doing it, because it is impacting my life.
• 42:29
  That analogy of the corn was really bad, but it, I went with it because I started
• 42:34
  and I couldn't stop, but it really is, you know, does, does the need outweigh the
• 42:42
  ability to feel like you're living your best life and you can't use the skills or
• 42:47
  the resources that you have to mitigate any negative impact.
• 42:52
  that it may have.
• 42:53
  think that's a really good analogy honestly as someone who, and I
• 42:58
  legitimately know that this has come to a shock to a number of people who know my
• 43:03
  daughter now.
• 43:06
  When she was about two and a half, I pushed hard for early intervention for
• 43:10
  speech services because she had five words.
• 43:13
  Mm.
• 43:13
  and she was so frustrated and so angry and the rest of the family was so frustrated
• 43:19
  and so angry because she had so much to communicate and no skills to do so and
• 43:25
  that was a huge problem and I ran into her speech therapist recently and asked if
• 43:32
  perhaps there was some sort of money-back guarantee because she now literally talks
• 43:37
  in her sleep, talks all the time, never
• 43:42
  She's using all of those words.
• 43:44
  of frustration...
• 43:47
  Oh yes, at length and repeatedly.
• 43:49
  I don't know how in our family.
• 43:51
  I mean, nobody else is talkative at all.
• 43:55
  But then looking at our son, who is quite bothered by loud noises, but it has to be
• 44:03
  really loud before it's a problem.
• 44:05
  So maybe it's just that he doesn't like loud noises.
• 44:08
  And if it's not...
• 44:10
  really impacting his day-to-day life.
• 44:12
  You know, I mean, not liking corn is not going to cost you job opportunities
• 44:18
  probably, except like professional corn eating, I guess.
• 44:23
  You know, it's not probably really impacting your social life.
• 44:26
  It's not probably really messing with your head.
• 44:32
  You know, it's not a real problem.
• 44:37
  So you know, if my kid doesn't like loud noises, but it has to be at...
• 44:41
  took him to the circus this weekend and he wasn't super stoked about it because it
• 44:45
  was very loud and very flashing lights and a lot of people, that's not a thing he's
• 44:52
  going to run into on a daily basis.
• 44:53
  So if it's not impacting him on a regular basis, then hand the kid a pair of
• 44:58
  earplugs and don't worry about it.
• 45:01
  mitigate it.
• 45:02
  Yeah.
• 45:03
  I think, I think that, you know, it can get to a place though, where, you know,
• 45:08
  the, the not liking corn, if I have a visceral reaction, right?
• 45:12
  When I see corn on the plate and it causes me to have anxiety and it causes me to,
• 45:18
  how am I going to manage this?
• 45:19
  I don't know how to manage this.
• 45:20
  I don't know what I'm going to say.
• 45:21
  They're going to be upset with me.
• 45:23
  You know, then corn could be an issue, right?
• 45:26
  Or
• 45:27
  I avoid going to certain places because I'm afraid that corn is going to be on the
• 45:31
  menu or I start to look in an obsessive kind of way at the ingredient list of
• 45:38
  everything to see if corn is, even if it's illogical that corn would be in the
• 45:43
  ingredient list.
• 45:44
  So I think it can get to that place where it could be this simple kind of piece that
• 45:51
  then manifests into a difficulty.
• 45:55
  And I guess that's what I'm talking about, right?
• 45:57
  Is anything can be and anything can't be.
• 46:01
  And I think you need the context and you need to really be able to balance that
• 46:08
  with the resources that someone has to mitigate.
• 46:12
  Sorry, I was just gonna say your example about...
• 46:14
  that today I can manage it.
• 46:17
  Maybe six months from now it becomes a bigger issue and I need to move into a
• 46:21
  different way of looking at getting some assessment or getting some intervention.
• 46:26
  the way our house was for a while a child who maybe has some struggles you can
• 46:31
  manage well at home but then once they enter the school system it gets to the
• 46:36
  point where they if they can't self advocate and it's impacting them both
• 46:42
  socially it's impacting their teachers and their classmates that depending on their
• 46:46
  age and stage there might be resources that you need now that
• 46:50
  you didn't need six months ago, or that you won't need six years from now or a
• 46:54
  year from now, but there could be points along the journey where you do need
• 46:58
  support because there are going to be things that are unavoidable, or that you
• 47:03
  need them to access those services or do those particular things that it's beyond
• 47:08
  your ability to mitigate the things that they can't handle or that they're
• 47:13
  struggling with.
• 47:15
  So that piece of what's okay in some contexts.
• 47:21
  when things change, then maybe you do have to seek support or look for services or
• 47:26
  figure out what the underlying issue is and then see what you can do to help them
• 47:32
  in those specific times or places even.
• 47:39
  Mm-hmm.
• 47:48
  And a lot of times I hear from families that, you know, kids will hold it together
• 47:53
  at school.
• 47:54
  And when they come home, all hell breaks loose.
• 47:56
  Like they've held it together all day.
• 47:59
  It's been really hard for them.
• 48:01
  But when you talk to their teachers or their peer group, it's like, oh no,
• 48:05
  they're doing just fine.
• 48:07
  On the outside, they're doing just fine.
• 48:09
  On the inside, they're working so, so hard to give the illusion that they're doing
• 48:14
  just fine.
• 48:15
  That when they get home.
• 48:17
  home life for the next hour, two hours, four hours, six hours is extremely
• 48:22
  difficult.
• 48:24
  And it's hard because the cause of the distress was something that you don't have
• 48:30
  control over and it's hard for you to mitigate.
• 48:32
  So you're dealing with the outcome of the distress, but not necessarily being able
• 48:39
  to change the cause of it.
• 48:40
  So oftentimes I'll have families coming looking for support.
• 48:46
  and saying, you know, people think I'm crazy because the teachers say, you know,
• 48:50
  they're doing such a great job.
• 48:51
  And when they go to grandma's house, they're doing such a great job.
• 48:54
  And when they go to their friend's house, they're doing such a great job and great
• 48:58
  job.
• 48:59
  And, you know, and the only people who are seeing the struggles are, you know,
• 49:05
  parents at home.
• 49:07
  And those, the parents are coming and saying, are we doing something wrong?
• 49:11
  Because how are they holding it together in all of these other environments?
• 49:16
  But then with us, we're seeing behavior, we're having outbursts, and oftentimes
• 49:25
  that's the explanation of that is that home is the safe place for them to be able
• 49:31
  to then expel all of the energy they've had to hold in, in those places where
• 49:36
  they've had to work really, really hard, even though they haven't been doing as
• 49:40
  well as it looks like they've been doing.
• 49:44
  I guess the thing I wanted to add to that as someone who is neurodiverse and dealing
• 49:51
  with that is that the problem doesn't have to make any sense to anyone else for it to
• 49:57
  be a legitimate problem.
• 50:00
  If corn has become an obsessive issue that is causing you...
• 50:08
  real problems, it doesn't make any difference whether I think it's ridiculous
• 50:13
  or not.
• 50:13
  It needs to be treated as a real thing.
• 50:19
  I didn't realize until I was 40 that other people don't experience things as
• 50:24
  physically painful when they're bothersome.
• 50:27
  That we're not talking about, you know, oh I don't really like that light that we're
• 50:32
  talking about, you know.
• 50:34
  physical and emotional actual distress, and that if something is causing distress,
• 50:38
  it does not matter if it makes any sense to anyone else.
• 50:42
  You know, that it needs to be treated and respected in the same way as you would
• 50:49
  presumably, you know, deal with a physical injury to your child.
• 50:55
  That if it is causing them distress, you would deal with it, because that's what we
• 50:58
  do.
• 51:01
  And sometimes it's even, even the person themselves can't put meaning to it, they
• 51:05
  just know, right?
• 51:07
  And so sometimes we get caught in this cycle of trying to have them explain, tell
• 51:13
  me what's going on.
• 51:14
  What's it, and they can't put words through it, all they can say, ah, right?
• 51:19
  Like it's just this, it's just yuck, and I can't tell you why, and I can't put
• 51:25
  meaning to it, and I can't make this a cognitive process.
• 51:29
  I can just tell you that this really, this causes me pain or discomfort or it just
• 51:34
  feels horrendous and oftentimes we're looking for meaning so that we can try and
• 51:42
  come up with solutions when sometimes what we just need to do is bear witness to it
• 51:48
  and be there and have empathy and really help to be in relationship at the time to
• 51:54
  help somebody work it through because it's...
• 51:57
  that discomforting and it's just really hard and that's what they need at the
• 52:02
  time.
• 52:03
  So sometimes the answers aren't there and we have to be okay with that.
• 52:09
  I think that's such a great point because I think, you know, somebody breaks a bone,
• 52:14
  we don't expect them to explain to us what pain is.
• 52:18
  And there's things that are universally bothersome and distracting to such a
• 52:24
  degree.
• 52:24
  I don't know anyone who wouldn't be distracted by mosquitoes in their ears or
• 52:31
  a fire alarm randomly going off.
• 52:33
  You know, it's pretty expected that those things are bothersome.
• 52:40
  And we don't expect people to justify being bothered by those things, or justify
• 52:46
  being in physical pain.
• 52:48
  And, you know, I think we can just understand that we don't have to
• 52:56
  understand what is causing a problem.
• 52:58
  You know, we can just deal with the results of it.
• 53:03
  the services don't always exist that we might need or we're sometimes more
• 53:09
  interconnected than other people.
• 53:11
  We kind of have to live in community and I mean, we get to live in community, but how
• 53:17
  can we support other families and other parents adapt and be supportive?
• 53:24
  a lot of, especially with people who are still trying to, in our communities, who
• 53:29
  are, who might be struggling, because we're talking about a lot of the positive
• 53:33
  aspects and being able to figure out what's going on in their families.
• 53:37
  They can go through times where they are really struggling and feel, maybe feel
• 53:42
  judged or can't access the services that they need and are then feeling really
• 53:48
  alone.
• 53:48
  So how can we be more supportive in our communities of people who are struggling?
• 54:06
  I feel like that's a pretty loaded question because there's so many layers
• 54:10
  there.
• 54:11
  Because you're right, there's not enough service and the service that there is,
• 54:15
  there's often a wait list and you know, like there's lots of barriers sometimes to
• 54:20
  accessing service.
• 54:21
  I think some of what we can do is we can look to kind of non-traditional places to
• 54:27
  provide support, right?
• 54:29
  So I think about, you know...
• 54:31
  the parent in the grocery store with the child who is having a meltdown about
• 54:37
  something.
• 54:38
  And I think about how much difference we might be able to make as we walk by them
• 54:44
  if we just say to them something like, I see you and you're doing a good job.
• 54:48
  And we just keep walking, right?
• 54:51
  Because I don't know about you, but I've certainly had the experience more times
• 54:57
  than I want to remember.
• 54:59
  of having to try and manage and mitigate, you know, difficult behavior in front of
• 55:05
  other people.
• 55:07
  And one of the first places I go as a parent, as a member of the community is
• 55:12
  shame, right?
• 55:13
  Like I'm embarrassed, I don't, you know, and I give myself a lot of negative
• 55:18
  self-talk of, oh, you know, and I may not be necessarily using all of my skills or
• 55:24
  all of the, you know, the things I have at...
• 55:27
  get to the car and then you can do this there.
• 55:29
  want it to stop, right?
• 55:30
  Like, you know, please, can we just stop?
• 55:33
  Can we just get to the, you know, like get me out of here.
• 55:37
  Yeah, yeah, exactly, exactly.
• 55:41
  And you know, I may have, you know, bribed with chocolate bars, anything to just make
• 55:45
  it stop, right?
• 55:47
  So, and the difference that it could make when you can just see that knowing look
• 55:52
  from someone that's not judgmental, because that's your worry.
• 55:55
  right is that people are judging and thinking you're sometimes somehow doing
• 56:00
  something wrong when all kids have temper tantrums, all adults have temper tantrums
• 56:07
  for that matter.
• 56:07
  Like, let's be honest here, all human beings do.
• 56:10
  And so why do we not see that we have such power as community to just give that pat
• 56:19
  on the back or that you got this mom or, you know, the statement of, you know,
• 56:25
  you know, way to go dad, you're working hard, or even just a look, right?
• 56:29
  An eye to eye contact that says you're not alone, right?
• 56:32
  I think we can do those sorts of things.
• 56:34
  I think we can think about ways that, you know, we can encourage connection in our
• 56:44
  community, right?
• 56:45
  So some of the initiatives around, you know, the benches on the schoolyard so
• 56:49
  that kids can, if they're feeling alone, they can.
• 56:52
  sit on the bench and not in a way of feeling excluded, but in a way of
• 56:57
  normalizing to say, I'm feeling alone and I would like a friend.
• 57:02
  And it's not a shameful journey.
• 57:04
  And it's not a journey of, oh, let's feel sorry for that child.
• 57:07
  It's a journey of, it's okay to express a need and for that need to be acknowledged
• 57:14
  as a valuable need.
• 57:16
  And I have, you know, as a kindergarten age kid, I have the power
• 57:22
  to change that trajectory for that friend of mine today.
• 57:26
  They're lonely and I have the ability to play with them, right?
• 57:30
  So I think being able to do those sorts of things, I think being able to ensure that
• 57:35
  we have information available in ways that people can access it.
• 57:40
  They used to work in the violence against women community and we would often leave
• 57:46
  information taped to the back of the bathroom stall doors.
• 57:50
  so that people can read it in a way that they don't necessarily feel.
• 57:55
  Because there can be, people can feel embarrassed or shameful, and they
• 58:00
  shouldn't.
• 58:01
  They shouldn't have to feel that, but they do because of some of the structures that
• 58:05
  are still in place.
• 58:06
  So, especially in rural and small communities, you may not wanna ask your
• 58:11
  neighbor for help because your neighbor is also the person, your life is well
• 58:17
  intertwined with each other.
• 58:19
  right?
• 58:19
  And so if you want to have some of that privacy, thinking about ways that we can
• 58:25
  provide information that's accessible, but private at the same time.
• 58:30
  You know, I think also one of the one of the groups that I'm a part of is the rural
• 58:37
  FASD network.
• 58:38
  And it was it's a network that's been started by parents.
• 58:43
  And it came from a place of saying, we don't have what we need.
• 58:48
  for our kids and for us, and the agencies aren't doing it, we're gonna do it.
• 58:54
  And it's one of the most amazing sources of information and support and empowerment
• 59:03
  that I know as a professional and as a parent.
• 59:07
  So thinking about how can I make the difference in someone else's life?
• 59:12
  Maybe, for example, I don't have a child with Down syndrome.
• 59:16
  What could I do?
• 59:17
  that could make a difference for a family in the community that does have a child
• 59:21
  with Down syndrome.
• 59:22
  I don't have to walk the journey to be able to use my individual power in the
• 59:27
  community to make a difference for others.
• 59:29
  So having awareness, thinking about opportunities that I can have to make a
• 59:35
  difference, and recognizing that no effort is too small, right?
• 59:40
  Because if 20 of us do a really small thing,
• 59:44
  it can make a huge difference.
• 59:46
  And like I said, even those looks in the grocery store, even those at the community
• 59:56
  meeting, if you know that a parent is really struggling going up to them and
• 1:00:01
  saying, you know what, you're doing a great job.
• 1:00:04
  I just want you to know you're doing a great job.
• 1:00:05
  Or I just want you to know I notice you and I notice you in a really, in a
• 1:00:09
  positive way.
• 1:00:11
  You know, being able to do those little acts of kindness to be able to help people
• 1:00:17
  feel like they belong and they belong in a way that isn't shameful or isn't something
• 1:00:24
  that they need to be worried about, I think can make a huge difference while
• 1:00:28
  we're still working hard to advocate for a system and social change, right?
• 1:00:33
  I mean, we have to do that big piece as well.
• 1:00:37
  But those individual interactions relationally can make a huge difference in
• 1:00:41
  the journey of a parent who is his parenting a child who is making, sometimes
• 1:00:46
  makes the journey hard.
• 1:00:48
  Sometimes it's exhausting.
• 1:00:49
  Sometimes you feel like you're all alone and you're doing it all wrong.
• 1:00:54
  And having the person in front of you, Tim Horton's buying you a coffee, they have no
• 1:01:00
  idea.
• 1:01:02
  much difference they just made in your life.
• 1:01:04
  Like you can do simple things like that too if you have the economic means to do
• 1:01:08
  that or you know those simple things can make a huge difference.
• 1:01:13
  Like I said while we're still trying to change the world.
• 1:01:15
  with them for years.
• 1:01:17
  And to that one person, that did mean the world, right?
• 1:01:20
  So that's really important to remember.
• 1:01:24
  I know as our children grow up, the ways that, you know, kind of the educational
• 1:01:30
  system or social systems interact with our kids.
• 1:01:35
  change, you know, as they get older, I know you have teens and adults, so you
• 1:01:39
  know what I'm talking about.
• 1:01:40
  So I'm wondering if you have any insight for those of us who are parenting older
• 1:01:44
  children who are neurodiverse, both in kind of helping them self-advocate and yet
• 1:01:49
  still being involved enough to support them in those times where they can't
• 1:01:55
  really self-advocate or haven't learned those skills quite yet.
• 1:02:13
  Yeah, I think for me, once again, it's a recognition, first of all, that we're
• 1:02:19
  working in and working with a system that is not what it should be.
• 1:02:26
  Um, because if, if it was the system that it should be, then we shouldn't have to
• 1:02:32
  advocate.
• 1:02:33
  So that's kind of my, my baseline, right?
• 1:02:36
  Anytime I have to advocate for something tells me that there's a lacking in the
• 1:02:40
  system.
• 1:02:40
  And that's not a blame of the system.
• 1:02:42
  I mean, the system has been created, you know, for eons and we make changes and we
• 1:02:48
  make adaptations, but systems are slow to change, right?
• 1:02:51
  And systems tend to work better.
• 1:02:55
  when they kind of look at, you know, kind of the collective, you know, the
• 1:03:00
  collective mass of the majority of people would work well with this, right?
• 1:03:04
  So anybody who's on either end of the extremes of that majority, the system
• 1:03:08
  doesn't work the best for.
• 1:03:10
  So I think we have to acknowledge, first of all, that we're working in an imperfect
• 1:03:15
  system.
• 1:03:17
  And that's not meaning that there's anything wrong with our child.
• 1:03:21
  And it doesn't mean there's anything wrong with their parenting.
• 1:03:23
  assume that not, yeah.
• 1:03:25
  there's anything wrong with what we are doing per se.
• 1:03:28
  Maybe, maybe you are doing something wrong, but it's not the default, right?
• 1:03:34
  And that's, yeah, yeah.
• 1:03:39
  And that sometimes it's not because our kids can't advocate for themselves, it's
• 1:03:47
  that they can't advocate for themselves in an imperfect system.
• 1:03:53
  And so there are times where we may need to continue to do that role, not because
• 1:04:00
  of a lacking in them, but because the system is not set up for them to be able
• 1:04:07
  to use those skills in a successful way.
• 1:04:10
  And I'm also, I'm always looking at that kind of loss gain kind of, you know,
• 1:04:17
  analysis of how much is this going to
• 1:04:21
  cost for us to get this outcome.
• 1:04:26
  So yes, maybe they can self advocate and continue to work and continue to do, but
• 1:04:34
  the cost of that is too big compared to what we're gonna gain from them doing that
• 1:04:40
  piece.
• 1:04:41
  And so I'm often having those conversations with myself in the mirror,
• 1:04:47
  with my partner, with my kids, like which battles are we gonna fight here?
• 1:04:51
  right?
• 1:04:54
  And I come back to that piece of is this going to matter a year from now?
• 1:04:59
  If it's not going to matter a year from now, why am I making a big deal of it?
• 1:05:04
  Are they learning some skills or gaining some things that they can't get any other
• 1:05:09
  way?
• 1:05:09
  Then it might be worth it.
• 1:05:12
  Could they gain these skills or gain this information in other environments that
• 1:05:16
  would be less difficult, less challenging, maybe less affecting of their sense of
• 1:05:22
  self?
• 1:05:23
  Maybe then I'm not going to, you know, I'm not going to walk this walk.
• 1:05:28
  Is this going to affect my relationship with them?
• 1:05:33
  And if it's going to affect my relationship with them in a negative way,
• 1:05:36
  are there things I can do to make amends for that?
• 1:05:40
  Or
• 1:05:41
  If not, I really have to ask myself if it's worth it.
• 1:05:45
  It always comes back to that relational piece, right?
• 1:05:48
  And what's the gain here and what's the potential loss?
• 1:05:54
  I think that helping systems to remember our kids holistically, so I advocate often
• 1:06:07
  with systems for them to remember.
• 1:06:10
  not just the things that my child may need help with or is challenged with, but all
• 1:06:15
  of the strengths and the wonderful things they bring as well.
• 1:06:19
  And when we only have 20 minutes for the IEP meeting or we only have a small,
• 1:06:24
  oftentimes we can jump really quickly to the, okay, what do we need to figure out?
• 1:06:27
  What are the needs here?
• 1:06:28
  What are the deficits?
• 1:06:29
  What are the...
• 1:06:30
  and I'm like, whoa, whoa.
• 1:06:32
  That doesn't set a good tone for me.
• 1:06:34
  It doesn't set a good tone for us.
• 1:06:36
  If we're going to be deficit or negative based.
• 1:06:40
  So, you know, helping to set tone is often something that I still do.
• 1:06:47
  I do a lot of advocacy behind the scenes.
• 1:06:49
  I do a lot of scripting with my kids around, you know, these are some of the
• 1:06:56
  things you might want to ask.
• 1:06:58
  I do a lot of kind of even now there's times where I attend meetings or I attend
• 1:07:06
  appointments online.
• 1:07:08
  through texting, so I'm not in the room, but I'm there on the text so that if
• 1:07:12
  there's a question or sometimes I'm just sending an emoji, right?
• 1:07:17
  I'm keeping that relational connection there to say you have all of my power, you
• 1:07:24
  have all of my connection, you have all of my knowledge with you in the room, and you
• 1:07:31
  can access it how and when you need to.
• 1:07:35
  and there's no shame in wanting or needing to access it, you're no more successful if
• 1:07:41
  you access it or if you don't access it, right?
• 1:07:45
  The concept of success is if the outcome is your needs are met in a way that you
• 1:07:51
  can be the best person that you can be.
• 1:07:54
  And so trying to change the messaging about what's a successful
• 1:08:01
  meeting or successful intervention, independence did not always mean success.
• 1:08:08
  I am not always at my best independently trying to do whatever I'm doing.
• 1:08:14
  I'm often usually actually at my best and able to maximize my best self in
• 1:08:20
  relationship with colleagues who can help together.
• 1:08:24
  And so this idea of independent advocacy or being able to do it on your own.
• 1:08:29
  those are some great points.
• 1:08:30
  I mean, I know even as an adult, yeah, there are times where you go into an
• 1:08:35
  appointment and you want your partner, a sibling, a friend to come with you just to
• 1:08:40
  have, yeah, to have another set of ears or to remember to ask that question that
• 1:08:44
  maybe you're not thinking of at the time or have a podcast co-host, right, Katie?
• 1:08:48
  Because we're, yeah, we often work better when we're using other people's skills as
• 1:08:55
  well as our own.
• 1:08:56
  That's a good point.
• 1:08:57
  I wonder too, do you feel like there's any benefit in talking to your older kids
• 1:09:01
  about the gaps in the system and saying, this isn't just about you.
• 1:09:05
  Like we're facing a system that doesn't necessarily work for us.
• 1:09:11
  So we're gonna have to do these things together.
• 1:09:14
  And I will help you.
• 1:09:16
  And this is because of the system, not because of the way you are as an
• 1:09:21
  individual, right?
• 1:09:32
  Absolutely, absolutely.
• 1:09:34
  And I also talk to my kids a lot about the fact that the system doesn't just work for
• 1:09:39
  them, it doesn't work for most of the kids, right?
• 1:09:42
  And so, you know, when they're talking about, you know, a colleague of theirs
• 1:09:47
  who's struggling, you know, we often have that conversation of, you know, do you
• 1:09:52
  think the system's working for them?
• 1:09:54
  Because what I want is also to make sure that my kids know that they're not the
• 1:09:59
  exception here.
• 1:10:02
  um that most of the systems that we have are systems that many kids struggle with
• 1:10:09
  and they struggle with it for lots of different reasons right so kids who have
• 1:10:13
  anxiety issues kids who you know are have gender diversity kids who are you know
• 1:10:20
  neurodiverse kids who um you know like for body image needs like there's so many um
• 1:10:29
  realities of our humanity
• 1:10:32
  that make our systems make it difficult for us to be okay with who we are, that I
• 1:10:38
  would say the majority of humans in various systems aren't okay with being
• 1:10:44
  involved in those systems, right?
• 1:10:46
  And so I actually wanna normalize that, not just for my kids, but the kids and
• 1:10:51
  families I have the privilege of working with that.
• 1:10:54
  The reality is that most of us are not okay with these systems.
• 1:10:59
  You're not the exception because it's not meeting your need.
• 1:11:05
  We have to be changing these systems because they're not meeting many people's
• 1:11:10
  needs.
• 1:11:14
  That then creates a community of actually being...
• 1:11:22
  a community of recognizing that many of us aren't getting our needs met in the
• 1:11:27
  various systems that we're interacting with.
• 1:11:32
  Karen, I was just thinking about how important it is to help our kids start
• 1:11:37
  learning to advocate for themselves when they're little, because, you know, little
• 1:11:43
  kids little problems.
• 1:11:44
  And as much as it can be a pain in the ass, and I might wish that my children
• 1:11:50
  would quit telling me what they want, because it would be easier to just do what
• 1:11:55
  I was going to do, there are certainly times that...
• 1:12:01
  Taking into account their preferences for things is a very important way to teach
• 1:12:05
  them to advocate for themselves.
• 1:12:09
  And considering that we have the entire legal profession literally to advocate for
• 1:12:17
  us when we can't do it ourselves, you know, asking for help and asking for
• 1:12:22
  guidance can be really important.
• 1:12:26
  I'm wondering, as a neurodiverse parent who struggles a lot with things like
• 1:12:31
  timeliness and habits and routines and all those things, how do we raise our kids to
• 1:12:40
  not learn our habits or to...
• 1:12:47
  let's just not talk about my kids' chore charts, okay?
• 1:12:49
  Let's just not.
• 1:12:52
  You know, it's...
• 1:12:54
  It's really hard to teach your kids skills that you don't have.
• 1:12:59
  And as much as people say, well, you know, they'll, they'll learn that it's important
• 1:13:04
  to just keep working on it, which is absolutely true.
• 1:13:07
  There are still things that it would be better for them to just do, even if it
• 1:13:12
  doesn't come naturally to me.
• 1:13:16
  So how do I make my children be better people than I am, Karen?
• 1:13:19
  Despite the fact that they are 5 and 6 and I'm 42 and still can't keep my shit
• 1:13:22
  together.
• 1:13:25
  Help me out here, please.
• 1:13:29
  Well, I actually think the answer is in the question, which is, I think that first
• 1:13:39
  of all, we want our kids to learn that we all have areas of growth and areas that we
• 1:13:47
  struggle with.
• 1:13:49
  And we want our kids to learn that it's not about being able to manage everything.
• 1:13:56
  It's about being able to recognize the things we can't manage or we don't want
• 1:14:01
  to, because there are also things we just don't want to, and look at ways to get
• 1:14:07
  that need met in a different way.
• 1:14:10
  Right, and so I think it's about that concept that, you know, you said earlier
• 1:14:16
  about, you know, wanting kids to learn how to advocate for themselves early.
• 1:14:20
  I think we also want kids to learn how to advocate for others, right?
• 1:14:24
  So when they see
• 1:14:26
  and a child who has a need, they can advocate for their peer as well and see
• 1:14:33
  that they have something to offer to that person, not just for themselves, but they
• 1:14:38
  can have a gift to give to that person.
• 1:14:40
  So when it comes to things that you as a parent may not have strength in, I think
• 1:14:46
  we then look to others who do have strength in it.
• 1:14:50
  I'm always saying to my kids, not so much now because they're teenagers and they
• 1:14:55
  know I know nothing, but when they were younger and they still had the belief that
• 1:15:00
  I might actually have some knowledge, and they would ask me a question or ask for a
• 1:15:06
  skill that I didn't have, I would really clearly say, you know what, I don't know
• 1:15:10
  the answer to that.
• 1:15:11
  I don't know how to do that.
• 1:15:13
  That's not something I'm good at.
• 1:15:15
  Let's figure out who does know how to do that.
• 1:15:17
  let's look to somebody who has expertise or knowledge in that or, you know, the
• 1:15:23
  internet's become a really, I mean, within reason, right, because you have to be able
• 1:15:27
  to gauge the effectiveness of some of those internet resources.
• 1:15:31
  But, you know, organization is not one of my skills.
• 1:15:34
  I'm not neurodiverse, as far as I know, maybe I am, you know, it's possible.
• 1:15:39
  I'm certainly not organized, though.
• 1:15:41
  And, and so when I'm looking, and I recognize that my
• 1:15:47
  of organization is not a skill I want to pass on to my children.
• 1:15:52
  And so I'm looking to if there's other people in my family who have
• 1:15:56
  organizational skills, if there's places on the internet where we can look for
• 1:16:01
  strategies and ways to be organized.
• 1:16:04
  I'm always looking for things that are play and fun based because brains always
• 1:16:10
  do better if it's fun.
• 1:16:12
  or if it's exciting or interesting.
• 1:16:14
  And the definition of fun is always individualized, right?
• 1:16:17
  What I feel like would be fun may not be fun for you.
• 1:16:21
  But if our brain is feeling energized and excited about it, it makes the task
• 1:16:27
  easier.
• 1:16:28
  And I now have experts within my family.
• 1:16:31
  Like one of my kids is brilliant at organization and cleaning and it didn't
• 1:16:37
  come from me.
• 1:16:38
  There's no ifs, ands, or buts about that.
• 1:16:42
  They've developed those skills with, because we had a curiosity about how to
• 1:16:48
  develop them, and we looked for resources and sources outside of ourselves, and they
• 1:16:55
  have now created and have a skill set that I still don't have.
• 1:17:00
  And so I think it is that idea of recognizing that you will never have all
• 1:17:06
  of the skills and abilities your kids need or want.
• 1:17:09
  should probably wrap start.
• 1:17:11
  community or that interest about being curious about where you can access those
• 1:17:17
  skills can be the answer.
• 1:17:18
  like we've gone in a lot of, to wrap things up before we go into like another
• 1:17:23
  whole hour of talk.
• 1:17:24
  But I'm hoping that you can share maybe some of your go-to resources, be it
• 1:17:29
  websites or books or resources that you think would be helpful to people, either
• 1:17:36
  in the adoption community or in the neurodiversity community, if you have any
• 1:17:41
  thoughts on things that you find helpful or maybe refer to your clients or things
• 1:17:45
  like that.
• 1:17:58
  So I have a couple.
• 1:18:00
  The first one is in the adoption community, and these are Ontario
• 1:18:06
  resources, but they're on the web, so they're accessible to anybody.
• 1:18:10
  So the first one is the Adoption Council of Ontario, and I do need to be honest
• 1:18:15
  here that I also do work with them, so there's a bias there, but I think it's a
• 1:18:19
  fair bias.
• 1:18:20
  I think they're a great organization and a good resource.
• 1:18:23
  Tons of online information, webinars, education experiences, lots of free
• 1:18:30
  resources on understanding adoption, trauma, prenatal exposure, neurodiversity,
• 1:18:37
  tons and tons and tons.
• 1:18:39
  So that's at adoption.on.ca.
• 1:18:43
  For parent support around adoption, Adopt for Life, so it's adopt, the number four,
• 1:18:51
  life.com.
• 1:18:53
  offering parent support and information, parent support groups, just really tons of
• 1:19:02
  great information around that support area around parenting kids who are on
• 1:19:07
  permanency journeys who are adopted.
• 1:19:11
  Another shameless plug for an organization that's close to my heart is the Rural FASD
• 1:19:16
  Network.
• 1:19:18
  Once again, that's the network I was talking about that started from a group of
• 1:19:22
  parents around a kitchen table saying, we need more and created this amazing
• 1:19:28
  resource that has an online presence as well as an in-person presence.
• 1:19:34
  So a really, really great resource.
• 1:19:38
  And I'll put a plug out there if people you know want to connect in with me they
• 1:19:42
  have questions They heard something that I've spoken about on this podcast They
• 1:19:46
  want more info about they can find me at CP professional services dot CA So CP the
• 1:19:54
  letter CP professional services dot CA And I'd be happy to you know Expand on things
• 1:20:01
  or give some more info about things
• 1:20:04
  There are tons and tons and tons of resources.
• 1:20:08
  Most of them will be listed on the adoption.on.ca and they're not just
• 1:20:14
  adoption resources.
• 1:20:15
  So they're about parenting kids who are neurodiverse around dealing with trauma,
• 1:20:22
  around talking to kids about difficult things, tons of resources on that site.
• 1:20:28
  So I think I'll, rather than list off more, I'll just send people there and...
• 1:20:33
  have it all in one place too.
• 1:20:34
  encourage people to connect in with me if they have specific needs, and I'll try
• 1:20:38
  hard to direct them to resources.
• 1:20:45
  Yeah.
• 1:20:48
  All right, so Karen, since we're wrapping up in the interest of this show not being
• 1:20:54
  four hours long, we ask all of our guests if you were going to dominate a
• 1:21:00
  category...
• 1:21:01
  I'm going to start over.
• 1:21:03
  We ask all of our guests if you were going to dominate a category at a county fair,
• 1:21:07
  what would it be?
• 1:21:08
  And categories can be real or made up to ensure that you win.
• 1:21:14
  I was going to dominate a category.
• 1:21:16
  I think for me, and I don't know if this answers your question properly, but for
• 1:21:20
  me, it would be the person who got to sit on the merry-go-round the longest, and I
• 1:21:26
  would beat the merry-go-round writing, longest writing kind of, and I could sit
• 1:21:32
  on it for hours and hours and hours and not have to leave.
• 1:21:36
  because I could last probably a few minutes and then start to feel nauseous,
• 1:21:39
  so I would not compete with you at all.
• 1:21:41
  I'd be like, you get that category, for sure.
• 1:21:46
  Yeah, that's right.
• 1:21:47
  Are you a right person, Katie?
• 1:21:55
  Alright, I win, I win!
• 1:21:58
  I am just...
• 1:22:01
  I love, you know, I'm compiling a list of ways to tell me you're neurodiverse
• 1:22:07
  without telling me.
• 1:22:09
  I love the Tilt-A-Whirl.
• 1:22:11
  And the girl child also, anything with that centrifugal force, we are here for
• 1:22:16
  it.
• 1:22:18
  Yeah, weighted blankets, Tilt-A-Whirl, all of it.
• 1:22:22
  Love it.
• 1:22:23
  Anything upside down.
• 1:22:27
  No.
• 1:22:28
  Hard no on anything up in the air.
• 1:22:31
  But if you want to leave me on the ground and spin me around in circles, absolutely.
• 1:22:37
  Although I can say that drinking a fair amount of beer and then getting on the
• 1:22:40
  Gravitron, bad idea.
• 1:22:42
  I'm pretty sure it forces the alcohol through your liver faster.
• 1:22:46
  Worst hangover I've ever had.
• 1:22:48
  Bad, bad choice.
• 1:22:50
  Yeah.
• 1:22:51
  or send us an email and we will read it out for you.
• 1:22:54
  Katie, have you got something to cuss and discuss or cuss or discuss this week?
• 1:23:09
  I do Arlene and it's kind of a two-parter.
• 1:23:11
  One, I really hate when you're...
• 1:23:15
  I don't want to say taken aback, but kind of surprised and left wrong-footed by
• 1:23:19
  something and so you don't react as fast as you might want to, and it leaves
• 1:23:24
  someone else with a negative opinion of you.
• 1:23:27
  And the second part of the same cussing and discussing is the tremendous lack of
• 1:23:37
  a...
• 1:23:38
  commonly used singular gender neutral way to refer to other humans.
• 1:23:49
  My daughter was corrected by a server at a restaurant this weekend as to that
• 1:23:55
  person's preferred pronouns, which is absolutely fine with me.
• 1:23:59
  I appreciate that they did it.
• 1:24:01
  I really appreciate the level of vulnerability
• 1:24:07
  put him in.
• 1:24:10
  I feel very, very bad that I did not react as quickly as I should have to thank him
• 1:24:15
  for correcting us, because I was trying to think to myself if I had used any gendered
• 1:24:20
  pronouns at all, because I try pretty hard not to in general, because I think
• 1:24:26
  gendered pronouns are kind of bullshit.
• 1:24:28
  And especially with folks where my first perception of who I might think they
• 1:24:36
  are...
• 1:24:37
  may or may not match how they identify themselves, and as I tell our children, we
• 1:24:43
  believe what people tell us about who they are.
• 1:24:46
  And so, whether it makes sense to us or not, if they like corn and they don't like
• 1:24:51
  corn, they identify in a way we don't understand or that we might not
• 1:24:56
  immediately jump to, I'm going to trust what you say about yourself.
• 1:25:01
  But the fact that there is not
• 1:25:05
  good way to refer to people that is not gendered in a singular way.
• 1:25:11
  I frequently use y'all to refer to a group, but there's really not a good
• 1:25:19
  gender-neutral singular pronoun, and there should be.
• 1:25:22
  Not a pronoun.
• 1:25:24
  A way to refer to other humans.
• 1:25:26
  That doesn't sound like hello, fellow human!
• 1:25:28
  Who is a human?
• 1:25:30
  Just humaning.
• 1:25:31
  Yes.
• 1:25:32
  Greetings, human!
• 1:25:34
  Maybe I'll just go with that.
• 1:25:36
  Anyway, so if any of our listeners have suggestions, I really would love to hear
• 1:25:40
  them.
• 1:25:42
  Karen, what would you like to custom discuss today?
• 1:25:48
  I think for me it is building on what we talked about earlier and the difficulty of
• 1:25:58
  feeling shame when I or other parents are doing a damn good job and other people's
• 1:26:05
  reactions make me or them feel like we're not.
• 1:26:09
  When they have no frigging idea what my life is like or what we just were doing.
• 1:26:15
  going through 10 minutes ago or a year ago or how far we've come.
• 1:26:21
  I think that, I think, you know, thinking about how we can manage that better maybe,
• 1:26:27
  or how that can not matter so much or not have as much impact, because I think it
• 1:26:35
  really affects a lot of us and it shouldn't, it shouldn't take that power
• 1:26:40
  away from us.
• 1:26:41
  So I think that would be what I would say.
• 1:26:44
  in terms of systems, there's obviously lots to improve, but I think especially in
• 1:26:48
  rural places, one area that I know our family has struggled is in finding
• 1:26:55
  recreational opportunities that work for our neurodiverse kids.
• 1:27:01
  And
• 1:27:02
  I'm not blaming the people who run the programs because especially in rural
• 1:27:06
  places it's mostly volunteers and it's hard to get volunteers at all.
• 1:27:11
  And so, I mean, people end up doing the things that their kids love or, you know,
• 1:27:16
  that they're running programs that work for them or that, you know, they're
• 1:27:22
  following a structure that's been set out for them.
• 1:27:24
  And so that's what's going to work.
• 1:27:26
  And there aren't the same options, you know, just based on geography and the
• 1:27:31
  number of people who live in the places we live.
• 1:27:33
  So some of the things that might work better for our kids that get offered in
• 1:27:38
  urban areas don't end up where we
• 1:27:41
  the things that are here don't always fit.
• 1:27:45
  So then it means that.
• 1:27:48
  that some of our kids miss out, which is really, really difficult.
• 1:27:51
  And sometimes those of us who see the need for programs don't have the capacity to
• 1:27:57
  start a thing or run a program.
• 1:28:00
  When you're in the trenches and just trying to figure things out for your
• 1:28:04
  family to try and start something new might not be something that you can do
• 1:28:09
  right now.
• 1:28:10
  So I mean, I guess maybe I look 10 years or maybe five years down the line and
• 1:28:15
  think that's maybe something I could do something about on a bigger scale.
• 1:28:18
  but right now it's just something I'm gonna cuss about.
• 1:28:26
  I don't know if you've had similar experiences, Karen, with that side of
• 1:28:31
  life.
• 1:28:43
  Absolutely, or the, you know, and I get it, I understand it, but the idea that,
• 1:28:49
  you know, child can participate if parent attends and that idea of, oh, yes, you
• 1:28:57
  know, okay, I didn't think we were signing up so that I could also do this, this or
• 1:29:04
  this.
• 1:29:04
  And, but, you know, making it work and, but sometimes just wishing that I also
• 1:29:11
  could have the hour.
• 1:29:12
  to myself that the other parents are having.
• 1:29:15
  And yeah, when my kids were younger sometimes, or the school trips, right?
• 1:29:20
  Where the school trips were, yes, you can go, your kid can go as long as you go with
• 1:29:24
  them or you send somebody, you know, it's hard, can be hard.
• 1:29:28
  already gave us where people can find you.
• 1:29:30
  So we're good on that end.
• 1:29:32
  But thank you so much for being with us and for having this discussion with it.
• 1:29:35
  We both really appreciate it.
• 1:29:48
  My absolute pleasure.
• 1:29:49
  It was a lovely conversation.
• 1:29:51
  Thanks for the opportunity.
• 1:29:52
  Thanks so much, Karen.