Maureen Bennie - Autism Awareness & "The 8th Sense"

In this episode of the Sensory Friendly Solutions Podcast our Host Matt George is chatting with Maureen Bennie, the Founder of the Autism Awareness Centre.

Maureen Bennie created the Autism Awareness Centre in 2003 to address what she saw as a gap in support, information, resources and advocacy for those who experience autism spectrum disorders. 

Maureen is the mother of two young autistic adults– Marc and Julia.  For 8 years, she managed an at-home Intensive Behavioral Intervention Program which involved working with speech pathologists, child development specialists, psychologists, occupational therapists, and physical therapists.

EPISODE GUIDE
2:19 Maureen talks about the effects of COVID-19 on the Autism Awareness Centre
5:19 Maureen introduces her two adult children with autism and their experience with the pandemic
7:47 Maureen introduces the disruption of routine we've all experienced and it's effects on our wellbeing
12:13 How Maureen breaks down routine and consistency with her children
14:59 How important the discussion around PPE and Sensory Overload is to the current time
16:41 Creating consistency in the home
22:01 Maureen's unique solution that allowed her children to better experience the world
25:35 Interoception: The Eighth Sense
36:21 Where you can find Maureen's work
42:26 Maureen's strategy to reduce the noise of the current world
47:07 Christel Seeberger addresses our listeners
49:15 Acknowledgement of violence within families in this moment
54:29 Christel's reflections on Interoception
58:31 Innovation Segment

Thanks for listening - Christel Seeberger and the Sensory Friendly Solutions Team.

Full blog posts and transcripts for each episode can be found on our website.

Podcast leadership is provided by Sensory Friendly Solutions Founder & CEO Christel Seeberger.

This podcast was produced by Matt George and was engineered by Zachary Pelletier.

Thank you to our sponsor TakingITGlobal, ensuring that youth around the world are actively engaged. Head to risingyouth.ca to learn more and to become the next RisingYouth grant recipient.

The podcast is also supported by New Brunswick Community College as part of the Community Resource Awareness During and After COVID-19 applied research project, funded by the New Brunswick Innovation Foundation. Learn more about NBCC's efforts to transform lives and communities.

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Transcript

Matt George (00:00:01):

Today's episode of the Sensory Friendly Solutions podcast on the Unsettled Media Podcast Network is brought to you by Sensory Friendly solutions. Discover Sensory Friendly Solutions for daily life. To learn more head to sensoryfriendly.net. Unsettled.

Matt George (00:00:24):

On the Sensory Friendly Solutions podcast this week is Maureen Bennie. Maureen is the founder of the Autism Awareness Centre. She's also an author, she's co-authored books, written over 200 articles and book reviews that have appeared in magazines, newsletters, and on websites throughout North America and the UK. Maureen created the Autism Awareness Centre in 2003 to address what she saw as a gap in support, information, resources and advocacy for those struggling with autism spectrum disorders. For Maureen, education and knowledge brings positive change to the lives of those affected by autism and autism spectrum disorders. Without further ado, we give you Maureen Bennie. Maureen, welcome to the Sensory Friendly Solutions podcast.

Maureen Bennie (00:01:23):

Thank you so much for having me today. I'm really honored to be here and honored to have the invite.

Matt George (00:01:28):

You told me before we started recording, this is your first podcast, is that correct?

Maureen Bennie (00:01:33):

It is indeed. So I feel a little bit nervous today. But hopefully I can share my wealth of information on this topic. And yeah, let my thoughts and feelings be known around all of these good things around autism and sensory issues.

Matt George (00:01:49):

Absolutely. And that's why I was talking to someone this morning who has a podcast production company out of Halifax. And we talked about the really interesting applications of a podcast. And the beautiful thing about it is we get to hear from experts like you about your personal experience with these topics. And so with that, I want to dive right in, we got to do a COVID check-in. It's been a weird year. Tell us a little bit about how you are personally and what's been going on. I mean, it's a strange time.

Maureen Bennie (00:02:19):

So for what's happened with COVID-19 for Autism Awareness Centre is that we have mainly been a conference provider and training provider, small group trainings. So when the pandemic was declared on March 11th, and then that shutdown started to happen on that weekend, I lost both of my major conferences in Ottawa that was scheduled on April 2nd and third in Ottawa. And then two weeks later, I had one in Halifax and I had to cancel that as well. So rolling into the fall season, I normally have three conferences this fall, Saskatoon, Winnipeg and Calgary, I had to cancel all of those.

Matt George (00:03:00):

Wow.

Maureen Bennie (00:03:00):

And now I'm looking now going into 2021 pretty much letting everything that I had booked in place go as well, because we have to work a year ahead to get these incredible international speakers from Europe and United States. And of course with the travel restrictions going on, we can't get them here. We have problems getting medical insurance, of course for travel. And then there's just the whole worry of bringing people together. So that's been a huge alteration in the business as well as not having that in-person connection anymore. Now we've jumped online with webinars, and I'm trying to do two of those a month. And I started in early May. And I was brand new to webinars.

Maureen Bennie (00:03:46):

But the funny thing is, is that we actually had that in my business plan for the past two years that I was going to jump online and start doing webinars. But your fear level especially I'm a woman now in my mid 50s, and it's hard to start something new, that you don't know anything about. And it was hard to jump in at first. Once I got going, I was okay. But I still remember doing my first trial recording and watching it and crying. And I was over because I was just like, oh. I am so used to speaking in front of audiences. I'm a person that jumps off the stage and starts mingling in the audience. I like to put a little comedy in there. And it's so difficult to do when you're just in a room by yourself and you're staring at that little webcam and you just think, "Am I holding your attention? Is this sounding okay?"

Maureen Bennie (00:04:45):

And then also that inability when you're doing this type of format, even though people can type in their questions and whatnot, it's not the same as you can catch somebody's eye in the audience and say, "Oh, I can see that person is puzzled. They have a puzzled look on their face." Or, "This person seems to be getting upset. I need to spend some time with them." So there's not that one-on-one or also group interaction and group dynamic. But it's the next best thing. And I say, thankfully, we've got this technology piece.

Maureen Bennie (00:05:19):

Now on the other side of things, I have two children with autism, my son Mark is 23. And my daughter Julia is 21. So I have what's called a family managed services program, meaning the family, i.e, myself, I manage the entire program for them, all of their activities. And they were having very rich and full lives out in the community with a nice balance of work, some additional educational opportunities, recreation and leisure opportunities. And of course, all of that is basically gone now. And I have my kids here, all the time. And there's a computer next to me in my office, which my daughter insists on sitting on and she wants to be in here when I'm doing everything, but I don't allow her in here for podcasts, webinars and that sort of thing. Plus, I don't always like her hearing the different topics that I'm talking about, she can be very sensitive about it, or she can say that applies to me. And then she starts perseverating on it. So yeah, it's been hard.

Maureen Bennie (00:06:27):

We still have our staff, we have an aid for each child, and we've managed to retain them. But again, it's what do you do? I used to even send them out to do various errands to make my life a little bit easier and now I'm reluctant to do that because I also don't want to be putting my staff at unnecessary risks as well out in the community. So yeah, life has been very different.

Maureen Bennie (00:06:51):

The other thing I did was I really increased my writing when COVID-19 first happened, because Autism Awareness Centre is a very global international website, I knew people would be looking to us for guidance. So I began to write a blog that was COVID-19 related every single week on a different topic. So I covered increased screen time, sensory issues around wearing personal protective equipment. And as different rules came in, for example, when mandatory mask rules came in, in different parts of the world, then I offered resources on that, how do you get this population to be able to use things like hand sanitizer, that's cold and then it evaporates, and you get that cool feeling. And a lot of our folks cannot tolerate these different types of sensory issues around these measures.

Maureen Bennie (00:07:47):

And then also helping people through loss of routine. So for example, all of a sudden, now you had kids at home all day, like my own kids, and how do we still keep that even keel because I'm on another project right now on family violence and the increase in family violence in particular that's happened around our community. And this is a real reality. And a lot of it has to do with, again, the predictability and the routine being interrupted, but also everybody living together in a small enclosed space. And even if you're fortunate, and you're in a larger house, when you're together all the time, those walls really start to close them. So I tried to focus a lot of my writing around physical activity, mental health issues, calming strategies, anything that I thought would be helpful for this population. So that's another thing that I did.

Maureen Bennie (00:08:50):

And then I also jumped into eBooks. So I had started writing one eBook a month back in January, and I just thought I better keep that going. So the eBooks, each one focuses on a different topic. For example, toileting issues. I've done one on life skills, adulthood, sexuality and relationships, feeding issues, education. I did one, yeah, education and I can't even remember. I have eight of them out there. And they're-

Matt George (00:09:21):

Wow, you're prolific.

Maureen Bennie (00:09:24):

Yes. And they're less than a latte. They're $3.90 and those are being downloaded all over the world, which is great. So it's an expensive way to get information that's very focused on one topic. And all of the little chapters are short articles, between 800 and 1200 words on a different topic, like around adulthood for example.

Matt George (00:09:50):

There are so many things that we're going to be plugging on this podcast and in our show notes to drive traffic to those things, the blog, the webinar, the eBooks, etc. But let's really dig in to some of those aspects. In the first episode of the podcast, we talked to a pediatrician who works on the social determinants of health, named Dr. Sarah Gander. And she brought up the same point that you did with this routine disruption. So she said, "The government has been good about keeping us safe and walking us through this for the most part. But things being introduced, like alternative school schedule," so you're doing one thing one day, and one thing the other, "we as a general population, maybe underrating the effect that that has on the sensory friendly community or the neuro diverse community." Was that something that became apparent to you really quickly, because of your personal circumstance and professional circumstance?

Maureen Bennie (00:10:45):

Absolutely. And you know what? It's the first thing I jumped into personally in my life. I said to my husband, "We have got to keep all of these routines as similar as we possibly can." So even though, especially in when the lockdown first happened, and we had two weeks of limbo, where we didn't really know what to do, I still had the kids getting up at the same time, my daughter gets up at 8:00 in the morning, my son gets up at 9:00. We had them dressed by 9:30, 10:00. We tried to do something physical. And at that time, of course, we were still in winter temperatures and that was hard. But what we did was, my kids are both really, they love WeFit. And so we got them going on WeFit routines.

Maureen Bennie (00:11:33):

And it was interesting, because I thought my daughter in particular was going to do a lot better. And what she started describing very early on into the pandemic was she said, "I feel my chest rising." So I knew what she was trying to describe was anxiety, but she didn't have that word for anxiety. And so I said, "Okay, you're describing anxiety, let's figure out what we can do." So she came up with, "I think I can do WeFit and that will help me." Great. So we went over to the WeFit and then she started to get panicked. She said, "I don't know how long to do it for. I don't know what I should be doing."

Maureen Bennie (00:12:13):

So we figured out, "Okay, let's break it down. What activities are you going to do on WeFit?" And I said, "Why don't we start with 20 minutes?" And she said, "Well, I know how to set a timer on my iPhone." I said, "Well, great, let's use your iPhone then." And she put that up there where she could see it, and then that became her go-to thing. And eventually, she was good enough at identifying those internal signals that were coming forth, and was able then to jump off the computer and then go and do the WeFit. Because Julia is very driven by screen time. And it's really hard to get her off of that. Whereas my son has always had more diverse interests, even though he's the more intellectually disabled and more profoundly affected by autism, he's always had these very big routines, I would almost call them. On a Monday he meditates from 4:00 to 5:00.

Matt George (00:13:10):

Wow.

Maureen Bennie (00:13:10):

Yeah. He has a coloring period in there where he gets out a coloring book and he colors for 30 minutes to classical music. He had a Thai massage therapist and yoga therapist coming in once a week and she stopped. But he had the sheet with all of the poses on it. So he started to take himself through that routine at exactly the same time that he always did it, which was at 4:15 on a Wednesday. Now I would suggest, "Why don't you do some yoga moves on other days as well?" No, he couldn't get his mind around that, he had to stick with what that routine was.

Maureen Bennie (00:13:45):

So he also reads aloud to himself about three hours a day, an adult nonfiction book. So he was looking at that. The library closed as well, and that was a hard one for us because I like to get Mark different documentary DVDs out of the library every week. And I know you can stream things but he is very tactile. He's got to have the case, he's got to open it up, put that physical DVD in the player-

Matt George (00:14:20):

Interesting.

Maureen Bennie (00:14:20):

... and then if there's a little booklet with it, he likes to be holding that. He likes to have-

Matt George (00:14:24):

So streaming doesn't have the same effect sensory-wise for your son?

Maureen Bennie (00:14:28):

Yeah, exactly. So yeah, that was the biggest thing, was just jumping into those routines. But then the next thing I really started teaching them about was the hand washing and the hand sanitizing. Because I knew that was going to be a really big one. But a lot of parents just think, "Oh, well you tell them to wash their hands." No, you have to tell them exactly when to wash their hands. So if we'd gone out for a bike ride, it was about coming back in and doing that immediately before they did anything else.

Maureen Bennie (00:14:59):

So they've been really good and Mark had to start wearing masks almost right away because he's in specialist medical clinics. So that was a requirement right away. And that just became part of his daily routine. So that's, I think, been the biggest thing, and also the increased screen time that a lot of our folks have had. And with schooling going to online, a lot of teachers did not really know how do we still reach this population, because the other thing is, a lot of our population has aid support in the classroom. Now you've lost that aide support. So mom and dad are expected to take that role at home. And that is a very difficult thing to do, particularly if you're schooling other neurotypical children.

Maureen Bennie (00:15:49):

And I don't know about other parents out there, but my children don't tolerate a lot of help from me. It's like, "Mom get away." They'll tolerate it from a support worker, they're good with that, but not... Well, I was like that too when I was in high school. If my mother looked over my shoulder I was like, "Get away."

Matt George (00:16:07):

Sure.

Maureen Bennie (00:16:08):

So yeah, lots of changes happen, for sure.

Matt George (00:16:12):

I know, lots of our listeners are looking for strategies to improve the quality of everyday life, especially given what we're going through right now. And I've written down so many things already. When you think about the habit and the routine change, is your counsel just to build that consistency and stick to it and absolutely be consistent with it? You also mentioned the interesting need to find alternatives. I mean, that could be a challenge for parents as well.

Maureen Bennie (00:16:41):

The consistency is key. And that's one of the things too, that I talked about when I did my webinar on the new At Home World with COVID-19, was if you need to make any changes in the routine, and that was going to happen, no matter what you did, you were going to have to have some alteration, that you got it going as quickly as possible and you stuck with it. If you are changing things every day, it just becomes chaotic, but it does for you as well, or I mean for neurotypical people it does as well. You really need to have that routine, that purpose, those goals that drive. And even if the goal is small, you've got to have something measurable at the end of the day to just feel like you did something, that you accomplished something. And that is one thing I really did advise to families at home was jumping in as fast as you could and keeping that consistency. One of the things we did in our house a year prior to COVID-19, I got into the whole Marie Kondo thing, the Art of-

Matt George (00:17:53):

Sure.

Maureen Bennie (00:17:53):

... Tidying Up on Netflix.

Matt George (00:17:54):

Sure.

Maureen Bennie (00:17:54):

Everyone was talking about it and I'm like, "Who is this Marie Kondo?"

Matt George (00:17:57):

Are you watching the new one called The Home Edit on Netflix?

Maureen Bennie (00:18:01):

No.

Matt George (00:18:02):

Oh, you're going to be obsessed with it.

Maureen Bennie (00:18:03):

Oh, okay. I'm looking forward to that. But I was watching Marie Kondo, and the first few episodes, I thought, "Oh my gosh, this has an amazing application to our neuro diverse community." Because it really had a sense of visual order categorical thinking and systematic thinking, which is the neurology in autism, is thinking in categories, groups systems. So the first thing I did is I emptied the kids' drawers, and you fold things up almost like a little packet, and you stand like a T-shirt on end.

Maureen Bennie (00:18:42):

So what was great about it is that you could open the drawer then and you could see every single thing that was in it. And it gave my children a higher level of independence, because I could say grab yourself a gray shirt. So they could open that drawer and see that gray shirt or they could see that pair of jeans. Whereas before, things were in a stack and that requires a lot more motor planning and skill to be able to move through a stock of clothes because you have to grab the top layers, you have to flip them up-

Matt George (00:19:15):

Sure.

Maureen Bennie (00:19:15):

... you have to look underneath, you have to stick your other hand in and then you have to pull that item out. So I Marie Kondoed pretty much every area of the house and then my daughter has an at home baking program. So I made sure that all of the baking things were in these two shelves in one area. And then we alphabetized all of the spices so they're in units where you pull out A through N, is in one tray, and then the rest of the alphabet on the other side. So it just made again, for more independence. So when I think about setting up the way we've set up our home, it's about how do we give our kids an independence, but the ability to know where to find things?

Maureen Bennie (00:20:05):

So we have a massive book collection, there's shelves all over the place, built-ins. And we took every single book off the shelf and then we categorized it by like celebrity biography, ocean liners, British history, the royal family. And so when Mark wants to get a topic for himself, he can do that. So one of the things we took a little drive, I think it was back in April, just to get out of the house and-

Matt George (00:20:33):

Sure.

Maureen Bennie (00:20:33):

... see something different. Yeah. And I stopped at a honey place, it's a small little place, and I just went in by myself to get honey. But Mark, he's been in there before and he knows that they have honeybees behind a glass, so you can see them making their honeycomb and everything. So a few days later, he went to the nature section, and he pulled a book off the shelf on bees and he said, like the trip. And I thought, "Oh, my gosh, he's made that connection." But he knew where to find that book on his own, he did not need my help. So particularly now because my kids are in their 20s, they don't want mom always showing them where things are. So we try to get that level of independence.

Maureen Bennie (00:21:18):

But the other big thing that we've done too, and this took me a long time to get there is there were certain things I had to accept that there was going to be some skills that my children were never going to master no matter how old they were or they would not get to the level of other people in their age bracket for certain things. Like my son is very dyspraxiac, he has a lot of trouble coordinating his movements, for example. So I'll give you an example that for years we tried to teach the children how to ride bikes. We hired an occupational therapist, we had one-on-one therapists working, we were trying ourselves, it just wasn't going to work.

Maureen Bennie (00:22:01):

And then it dawned on me too, that even if they were able to master riding that bike, were they ever going to be able to master the quick thinking that is involved with processing rules and information that's going to fly at them extremely fast? So for example, you're out on a bike path, there's a walker, and you ring the bell, and they don't move because you don't realize they have earbuds and then they can't hear your bell. So my kids would say they've run the bell and they'd probably run into the person because the rule is you ring the bell and then the person is supposed to move. Or what happens when someone is walking on the wrong side of the path, or what happens when you're on the bike path, but the walkers have come over onto the bike path rather than stay on the walking path, or a dog runs in front?

Maureen Bennie (00:22:52):

So I knew that our children would never have this quick thinking mechanism of being able to make snap safety decisions. But I still wanted them to have the joy and experience of being out on a bike. So we came up with the idea of we bought the tandem bikes, we are constantly stopped on bike rides. People are like, "Did you rent those bikes?" They are such a huge topic of conversation, because people are fascinated by seeing these two tandem bikes together. So my husband rides with Mark and I ride-

Matt George (00:23:28):

That's excellent.

Maureen Bennie (00:23:29):

... with Julia. But again, they are pedaling, they're getting the exercises, they're getting the joy of riding that bike without having all of these other safety layers involved. So it's still giving them the experience, but with an adaptation. So five years ago, when we were renovating our kitchen, I said to my husband, Ron, "We've really got to make this an autism friendly kitchen because we're going to be moving them into adulthood, we want them to be independent." So for example, we got an induction stove because when you take a pot off of that, even if you forget to turn the burner off, the burner's not on. It has to make contact with that pot. The burner is almost instantly cool as soon as you take a pot off of there.

Maureen Bennie (00:24:17):

If it's on high and the water's boiling and you turn it down to medium, it immediately goes down to medium. It's not this slow, gradual going down to that temperature. We put a tap in that is a touch tap. And it's got a light at the bottom that says it'll be blue for cold then it goes pink for warm and then it goes red for hot because again, because my children are delayed in getting that sensory information to the brain, they would stick their hand under there way too long, it would be hot, and it would be too late. They would be burned before they got the message to pull their hand away.

Maureen Bennie (00:24:57):

So another problem they've always had, they never know when they're thirsty. So we put the fridge in with the water and the ice, and that's been pretty good. They're still not great at going and getting those things on their own. And that brings me to my whole point around interoceptive awareness, which is something-

Matt George (00:25:16):

Yes.

Maureen Bennie (00:25:17):

... yeah, I discovered six years ago through starting to have conversations with the occupational therapist, Kelly Mahler. And-

Matt George (00:25:25):

And some of your readings Maureen, you call this the eighth sense.

Maureen Bennie (00:25:29):

Yes. So-

Matt George (00:25:31):

Right. Let's dig into it.

Maureen Bennie (00:25:32):

Sorry, go ahead.

Matt George (00:25:33):

No, let's dig into it. That's wonderful. Let's into it, the eighth sense.

Maureen Bennie (00:25:35):

Okay, yeah. So yeah, so Kelly Mahler, started talking about this eighth sense, where this is the sense that helps you feel if you're too hot or too cold, pain levels, if you're hungry, if you're thirsty. And when we started talking about this, it was like a light bulb came on. I said, "Kelly, this is why my children never tell me that they're hungry. They never tell me that they're thirsty." Both have had different types of toileting issues for years. And this is still ongoing. Particularly Julia will hold her bladder until she's ready to burst and she almost barely makes it to the toilet. So she's obviously not getting that signal early on that her bladder is full, it has to go to this bursting level. The pain thing, when my daughter was two, she had an ear infection, I mean, most kids are screaming when they have an ear in-

Matt George (00:26:33):

Sure.

Maureen Bennie (00:26:34):

All she did was pull her hair out bald around the area. But I still had no idea. I thought, is she-

Matt George (00:26:42):

Wow.

Maureen Bennie (00:26:42):

And she had just gotten her autism diagnosed at 23 months, so she was just over two. And it wasn't until that infection burst and everything was running out of the ear, I said, "Oh my God, she has had an ear infection."

Matt George (00:26:58):

Wow.

Maureen Bennie (00:26:58):

But never complained about it. So I've worked for years to try to get Mark and Julia to feel these different kinds of sensations and identify them. But again, there's just going to be some aspects of their impairment level where that is never going to come. And I've met people even in England, for example, through my work in the UK, where we're talking about adults in their 40s with very high IQs, they seem very capable and then they're found in their apartment on a Monday morning after having no help over the weekend, just on the floor. They have not eaten, they have not had a-

Matt George (00:27:42):

Sure.

Maureen Bennie (00:27:42):

... drink, they're completely dehydrated, because that signal never came to them, to have them go and get that drink of water. So that was a big revelation. And then through Kelly's work, I started to really pull this into the toileting issues, because this is probably... Toileting and feeding and eating, the biggest amount of mail that I get is on those particular issues.

Matt George (00:28:10):

Oh, wow.

Maureen Bennie (00:28:11):

But particularly in the toileting, it seems to be around constipation and withholding the bowel movement. Which got me to thinking again, is this that the person is not feeling this need to go? And the problem is when you withhold a bowel movement, after a certain period of time, it gets harder and harder. And then it becomes this vicious cycle, because then when the person does try to poop, the pain level is so high and now you're getting a fear and anxiety components tying in with this.

Maureen Bennie (00:28:44):

So my blog post this week was on constipation, withholding and what we call overflow, because sometimes too when you're withholding a bowel movement, then you get it's like diarrhea leaking out and the parent will think, "My child has chronic diarrhea," and it's not, they're actually chronically constipated, and they're getting this leakage coming out. So there's so many issues around that, and this is this interoception piece that really, in my opinion needs to be pulled into so much more of the work that we're doing with any neuro diverse population. Because if I look at myself and say, "Okay, what are my interoceptive issues?" I took up figure skating as an adult at the age of 40. And I'm competitive and I compete in Europe and I'm really enjoying it, it's been my big self regulation piece with all the stress that I have in my life. But-

Matt George (00:29:43):

That's fantastic.

Maureen Bennie (00:29:44):

... for example, I'll be going in to do a jump and my coach is like, "Your back arm is up way too high. It's up almost at your head level." And I'm like, "No, it's not, it's down my side." And then I look at it and he shows me on video and I have no concept. It's such a revelation, when I see the video played back because I'm like, "I thought I looked completely different than that." I thought my leg, on a spiral was way higher than it is. So I look at that for myself too and say, "Look at your own physical interoceptive awareness problems that you have." And it's interesting because my son is so dyspraxiac and I guess in some ways, I'm dyspraxiac too, because even when my coach is showing me something, if she's facing me, I can't convert that movement around. I have to have her skate in front of me so that I know, okay, I can't mirror image yet. I can't flip that in my mind. So I consider myself a fairly intelligent person, but obviously, I've got some deficits in that area.

Maureen Bennie (00:30:55):

So I think this whole piece around interoceptive awareness, it affects all of us because even you'll know certain people too, where they get a paper cut, and they go on and on about it. And then there's other people that we have to point to them and say, "Did you see that your finger is bleeding?"

Matt George (00:31:11):

Sure.

Maureen Bennie (00:31:11):

So why do we have those differences? But that's that interoceptive awareness. Or how can some people forget to eat? I love to eat, I would never forget to eat. And some people forget to eat, and all of a sudden they're feeling sick and lightheaded and then they realize, "Oh, I haven't had anything to eat in like six hours." So yeah, I think it applies to all the population.

Matt George (00:31:36):

Absolutely. And am I right in saying that there's an upcoming webinar on that very sense, or is that a past webinar?

Maureen Bennie (00:31:42):

No. Well, we have two on interoception. So we did one in June, which is available on demand with Kelly Mahler, which was a lovely introduction to interoception. And because we had such a strong response to it, and are still having a strong response to it, I asked Kelly if on September 24th, she could do a more in depth training for three hours. So she's developed a curriculum around this, she has developed all different kinds of strategies and tools about how you raise interoceptive awareness. So the first one was more of a this is what it is, this is what you're looking at, and some helpful hints. But this next one is a three hour deep dive to really get more of those skills and then how do we take this, knowing this information to the next level? How do we create interoceptive awareness? What kinds of materials can we use to support people to get this increased interoceptive awareness because you can see if people have that, their level of independence is going to be increased.

Maureen Bennie (00:32:50):

But it's also on many levels, a safety thing, because interoceptive awareness is also connected to interpreting your emotions. So when people, and this is another thing I get a lot of mail on, is my child is having a lot of meltdowns. Or I have an adult that's having a lot of meltdowns. And that has increased incredibly so during COVID-19.

Matt George (00:33:15):

Sure.

Maureen Bennie (00:33:16):

So it's how do you help that person recognize, like someone like my daughter, who's saying, "Mom, my chest is rising." And this is the first time she's been able to express that. When we're out on those tandem bike rides, sometimes she gets into free fall conversation behind me. And she's like, "Mom, when I was in elementary school, I didn't feel any happiness or joy. I only felt blank."

Matt George (00:33:44):

Wow.

Maureen Bennie (00:33:44):

So she is only able to articulate those feelings now in her 20s. So imagine if this is something we can start working on with young children at that preschool, kindergarten age to really help them build that interoceptive awareness, which will help them with their eating, pain management. Because this is another thing, I don't know if you know this, but our population has a much higher mortality rate of people dying under the age of 40. It's being studied by a group called Autistica in the UK, led by Dr. James Cusack, fantastic man also on the spectrum himself, very brilliant man. But he's starting to talk about, is it connected to this fact that our folks don't internally feel some of these medical problems? So if they have an ulcer, do they feel that? If they have some infection, like the infection I described with my daughter, being two years old, never complaining about that. Or not being able to articulate that.

Maureen Bennie (00:34:57):

For example, I will get parents who will just tell me that their child is chewing on wood, for example. Like the side of a table. And the first thing I'll ask them, is this something new? Or have they always been going for these harder objects? No, it's something new. I will almost immediately then my next thing will be, when have they had a dental exam? Or when was their last dental exam? And a lot will say, they've either rarely been to the dentist because again, it can be that real trauma experience, or it's been a long time. And so a lot of times that strange, like chewing on inedible objects can be related to we have cavities. We've got impacted food back there now where the gums are irritated. And again-

Matt George (00:35:48):

So kind of pain response.

Maureen Bennie (00:35:49):

Exactly. But this ability to articulate it is not there. So wouldn't that be great, if through raising interoceptive awareness, we help give our kids this language where they can start to point to things because that's one of the things that Kelly Mahler does is this whole body check, of going through from head to toe and helping people figure that out.

Matt George (00:36:15):

That's really fascinating, Maureen. If our listeners want to take part in any of these webinars, where can they register?

Maureen Bennie (00:36:21):

They just go to www.autismawarenesscentre, R-E, spelling on centre.com. And all the webinars are listed there right on the homepage, as well as we have a navigation bar along the top. And there's a separate one for webinars. So you can see all of our past webinars that have happened and then what are the upcoming webinars.

Matt George (00:36:46):

And we certainly want to drive traffic to the blog as well, because I think one thing that the entire population has been looking for throughout the pandemic is what do I do? What are the strategies that I take to actually make an action here? Because I'm feeling a bit like a deer in the headlights, especially in March and April. I know we all felt that way.

Maureen Bennie (00:37:05):

Well, and I think, too, is that when you have a neuro diverse community, that just looking at the general responses. If you just Google COVID-19 and you look, it doesn't necessarily apply to a neuro diverse population, because some of our population has really unique needs. So that's something I was trying to do through my writing. I also wrote a free download eBook on COVID-19 and coping at home. And it was, again, it's a collection of articles on aspects of COVID-19. And even things like, okay, I still want my child to be educated at home, but they can't do an education in a traditional way. What are some ideas?

Maureen Bennie (00:37:53):

So I did one blog on starting your own garden, and all of the things that could happen around that. Because you can involve a lot of senses, and a lot of those sensory pieces in doing gardening. Because you've got digging. You can be moving dirt around in a wheelbarrow for that heavy action stuff. You can be visually keeping a journal about, hey, where are those little seedlings? Having a look at them every day. It's also part of that routine, oh, we get up we have breakfast, then we go and water the plants. And there we are again, we're getting out that watering can, we're filling it with water. It's that heavy work type thing.

Maureen Bennie (00:38:35):

So I thought gardening would be a great way for, it's still an educational thing, you've got science there. But you're also with those sensory issues as well addressing those sensory issues. And by keeping say, a gardening journal, that would be something that you could share with a class. If you have a non verbal student, that student could be taking photographs, like my daughter is wonderful with photography, she speaks but she gets very shy speaking in front of a group. But however, if she could present her information or her findings visually through photographs, that would be much more effective for her. So wrote about that.

Maureen Bennie (00:39:18):

Also talked about the physical literacy piece, because we know that physical activity really reduces anxiety and keeps us self-regulated. But what happens if you've got a child who really hasn't moved? Like how do you even start this movement piece? Or when you've got a child like my Mark, who has so much difficulty with all of these coordinating things, what kinds of activities can I find for him that he can do? Or because he also has a lot of autoimmune issues and I don't want him at a public pool, what are some other things that we can just do in the backyard? Can we do some badminton? Can we set up some little bowling pins and practice our bowling? Because he loves to do bowling. So it's trying to find all these ways to meet these needs, but also within the confines of our home.

Maureen Bennie (00:40:13):

So I think I really talked a lot about that, about the calming strategies too. Because we talk a lot about addressing meltdowns or aggression after the fact. But there's so much that we can do to prevent our children from getting to that stage, and it's got to do with that regular physical activity, and those calming strategies, creating the predictability within the home. So calming strategies, both of my children have relaxation plans in place and they know how to do them. Julia knows how to take herself through a deep breathing cycle, to get herself calm. As I said, Mark is really fluent now with meditation, he has a period in the day where he goes into his room and listens to classical music.

Maureen Bennie (00:41:01):

And I talked about that, too, in my own webinar on COVID-19 about, you've got to have a time in the day, where you all separate, and maybe it's a quiet time in the house and TV isn't on and everybody's in their respective areas, just to have that break from the high level of sensory stimulation that can be going on, when you've literally got a full house. I think the only people that have really benefited from the full house are pets. They're having a great time-

Matt George (00:41:34):

[crosstalk 00:41:34].

Maureen Bennie (00:41:34):

... owners and all the family member. We have a cat, Mr. Darcy, and we got Mr. Darcy as a calming tool for Julia because she's very interested in cats. And yeah, he's loving it. Because he's got somebody petting him, carrying him around, letting him outside, bringing him in the second he wants. And I don't think he's ever had so much attention in his little black furry life. So he's having a-

Matt George (00:42:00):

Too funny.

Maureen Bennie (00:42:01):

... great time. Yeah.

Matt George (00:42:02):

Too funny. Maureen, you've been so generous with your time, we have so many action items here for our listeners to dig into your content, your material. Our final question is always what are your strategies? What are your strategy with you, with your family to reduce the overall overwhelm of the current time? And you've given so many already, but leave us with a strategy.

Maureen Bennie (00:42:26):

One strategy? I think my top one, again, would be sticking with routines and keeping the predictability. So we've kept our mealtimes the same. My son's getting much more adventurous in eating, but even with that, I've kept certain things on his menu to keep those favorites and those comfort foods there. Julia does a baking program on Tuesdays and Thursday mornings, we've kept that going. We've kept the getting dressed at the same time, every day going. Julia also has this period, it's at 7:30 to 8:00 every night where she sings karaoke. And I mean, it's-

Matt George (00:43:12):

Wow.

Maureen Bennie (00:43:12):

... loud.

Matt George (00:43:13):

Yeah.

Maureen Bennie (00:43:13):

So she does it in my office on a microphone, not this microphone, another microphone. And I don't do any work at that time down here, I just clear out. That seems to be something, that idea of singing is very calming. And of course, I think the regular physical activity, and I think that's going to become more of a challenge as we get into the winter months here in Canada, and we're forced more and more indoors. But finding things, is it getting a stationary bike? Is it using WeFit? Is it doing yoga? And there's so much available online too, on YouTube for free, little simple exercises you can do with weights. We're going to keep Mark's yoga up. So the routines, the predictability, and getting some of that physical activity in every day.

Maureen Bennie (00:44:04):

And also, again, get those calming strategies in place, what works for your child, make sure they get fluency in that, start to help them recognize when that anxiety is building, "Oh, it's time to go and do some WeFit." Or it's time to do some deep breathing to music or whatever it is that works for that particular family. For myself, it was going for walks. Our rinks opened again in August, so I'm back skating now. We're back up to three times a week. We have to skate with masks on which is a real challenge.

Matt George (00:44:45):

Interesting.

Maureen Bennie (00:44:46):

Let me tell you. But that for myself. Again, I know just by doing that the exercise is really helping with self-regulation, with sleeping, and it's interesting because I look at Mark in particular, whose awareness is not... I always think it's not massive about what's going on with coronavirus. But then I still remember the first time we tried to take him outside in March when the lockdown happened and he said, "Not safe, coronavirus outside." So he-

Matt George (00:45:21):

Wow.

Maureen Bennie (00:45:21):

Yeah. He was processing that, but again, not really expressing that in his day-to-day. So respecting those fears, those anxieties around COVID-19, but also providing information and explanations. Because a lot of parents get worried and think, "Oh, if I give my child too much information about COVID-19, they're going to perseverate, they're going to be fearful, but in many ways, it can take away their fears. Because it's something that we don't see, but it's also reassuring. By washing your hands, by social distancing, you're going to be okay. You will stay safe. And also showing what does that look like.

Maureen Bennie (00:46:05):

So I've put a lot of interesting things, there was a back to school article I did a couple of weeks ago. I think, actually last week of August, and it was about, I put all kinds of resources in there about what does social distancing actually look like? Because if you tell somebody stand six feet apart, that's a very abstract thing. So show it in a concrete way. So six feet apart is a hockey stick's width. So if you've got a hockey stick, start practicing that, get a tape measure, put objects apart and say... So create those visual supports around what these safety measures look like and when and where we have to use them.

Matt George (00:46:48):

Maureen, that's great advice. I could do this all day with you. Thank you so much for being on the Sensory Friendly Solutions podcast.

Maureen Bennie (00:46:54):

Well, thank you so much for having me, Matt. It was really fun to talk about this subject.

Matt George (00:46:59):

Be well.

Maureen Bennie (00:46:59):

Thank you. You as well.

Christel Seeberger (00:47:07):

So first of all, a huge thank you, to the people in organizations who reached out to us after the launch of our first full episode last week. Folks reached out across Canada. We're recording from the East Coast of Canada. But again, people all the way from coast to coast reached out to us, folks and organizations in the States, Ireland and as far away as Australia just gave us, yeah, shared news of our podcast, keep sharing. I'll say to people and organizations for whom sensory sensitivity, sensory overload and sensory friendly, are important, we really want them to be part of our conversations, and let us know what you think and what you want to hear about.

Christel Seeberger (00:48:05):

So in our second episode, we had the phenomenal, Maureen from Autism Awareness Centre, just share her wisdom and insights. And one of the things she talked about really echoing what Dr. Sarah Gander said in our first episode to start us off, talked about how our predictability and routine right now are being so interrupted, where everyone is living together, sometimes in a small enclosed space. And even if the space is not some enclosed, we're together all the time. And when we talked about the feeling about the walls closing in, and I'd say for everyone, not just for our community of people with sensory sensitivity, who experience sensory overload, just coping with all of that is difficult. And Maureen named it, she gave it voice and she said, "This can lead to family and domestic violence."

Christel Seeberger (00:49:15):

And I thought that it was incredibly important for her to recognize that and that violence in families and in households is something we often shy away from talking about recognizing or admitting it exists in our families, in our home, in our circle of friends, in our neighborhoods, in our colleagues at work. And violence, it can be physical, it can be sexual, it can be emotional, it can be financial, it can be abuse or neglect. And Maureen talked about a little bit of the work she was doing in her community around it. And we need to recognize that it can be between parents, between partners, directed from parents towards children, but also children towards parents or between siblings.

Christel Seeberger (00:50:21):

And there's all these things about it and we don't know how to talk about it, it's something that makes us really, really uncomfortable. That there's such huge, I'm going to say just stigma and shame, even the words we use, we're a victim of violence, a perpetrator of violence, and I just Maureen really shone a light on that. Those words are emotionally laden, they're heavy, there's a lot to unpack there.

Christel Seeberger (00:50:55):

So each week we share a blog post associated with every episode of the podcast. So something I did this week is I went and found links, because we know we're reaching an audience around the world. I went and found some resources. So for Canada, the United States, UK, Ireland, Australia, New Zealand, I went and found help and resources and links for people to go to, we'll put them in our blog post. And I really encourage our listeners to go learn, even if it's something that they don't feel they're experiencing, to go learn, to reach out if they have experienced violence in particular, because of the added stress of COVID. If you think you're more at risk of experiencing abuse and neglect.

Matt George (00:52:02):

And for you listeners, we'll also include the link directly to the blog in our show notes for this episode and for all episodes that follow. And one of the things Christel, that I loved so much about talking to Maureen, I was really captivated and just let her go, because she was really, really on a roll. And she was volunteering her personal experience about familial overwhelm, and I thought that was such an underrated point, that this is probably first and foremost, affecting families the most. And then you tack on sensory unique or neuro diverse needs. And I just thought that was so forthcoming, I've heard a volunteer, the personal experience of her and her family and her daughter and her son and their unique experiences of not only COVID but of the world. And I was captivated by that.

Christel Seeberger (00:52:50):

Yeah, Maureen gave so many just very concrete examples of how she problem solves. The challenges of daily life, I'm going to say in general. And then with the added burden of COVID and coronavirus. And Maureen is someone who, because of her work at the Autism Awareness Centre has this incredible toolkit of knowledge and resources available at her fingertips to go find ways to help. And I think recognizing that not everyone has that at their fingertips. And that's why we're talking about these challenges, and trying to give examples of solutions here. The Sensory Friendly Solutions podcast, let's share ideas. Let's share ways to help and recognize that everyone at this point in time needs help.

Matt George (00:54:03):

That's really excellent Christel. Is there anything else you'd like to reflect on, for episode two?

Christel Seeberger (00:54:07):

Yeah, there's three, actually a lot of things. I had a very long list of things that were just I-

Matt George (00:54:13):

She was great, wasn't she? She was great.

Christel Seeberger (00:54:15):

... a really long list. I narrowed it down to two more, Matt. And so the second thing I want to highlight is Maureen talked about all of the senses. And she introduced, she some really good examples.

Matt George (00:54:28):

Yes.

Christel Seeberger (00:54:29):

I thought you'd like that. She introduced the eighth sense, interoception, that internal body sense. So I want to share with the audience. I've written a blog post specifically about the eight senses and we'll include that link as well. And very specifically, Maureen gave a lot of examples. But the one that was just this fortuitous coincidence for me where she talked about how going to the dentist is incredibly difficult, because it's such a sensory experience. And that's exactly at this time something that we're working on at Sensory Friendly Solutions. We just had an MBA intern who is also a dentist, he spent nine weeks with us, talking to parents, talking to people with sensory sensitivity, and talking to dentists about just going to the dentist is a sensory rich experience. It affects all of the senses.

Christel Seeberger (00:55:33):

So what I want to do is direct listeners, we're going to include a link. We did an interview with Dr. Peggy Bown for her YouTube channel. And she talks to me and talks to our MBA graduate and dentist, Dr. Dhilip Kasthuri Rengan about sensory friendly dentistry. And it really highlights some of the easy solutions that can be put into place to tackle that that big problem of going to the dentist when sensory sensitivity is a challenge.

Matt George (00:56:10):

The discussion around that eight sense was so fascinating to me. And it made me think of actually Dr. Gander in episode one, in that mind-body connection. And when Maureen talked about certain individuals with a certain specific sensory friendly issue not being able to give voice to a specific thing in the body, that was completely fascinating.

Christel Seeberger (00:56:31):

Yeah. That really, especially that eighth sense. But even I'll say our sense of balance, our sense of movement to just our insights and our awareness of that, Maureen gave some examples of proprioception as a figure skater and her as an athlete and her difficulties with that. We have a lot to learn about ourselves and our bodies and how that works. And that actually, nicely leads into my third and final kernel of incredible wisdom that I wanted to end with is Maureen's brilliant advice. I just, I love this. She said, be fluent in what works for your child. And I'm going to add to that, be fluent in what works for you as a person too. As an occupational therapist, I often use concepts. I talk to people about being a parent detective or a person detective, understand yourself, understand your child, build a toolbox of strategies to have at the ready. But I really like just her idea of developing fluency in what sets your daily life up for success and just I guess, honor that literacy of being happy, healthy human beings every day. Be fluent.

Matt George (00:57:56):

Yeah. Really excellent advice. And Maureen also has webinars and eBooks available on all of these topics, and she invited our listeners to go to autismawarenesscentre.com. We will include that in the show notes for this episode. Episode two with Maureen was fantastic. Christel, thank you for reflecting on the things that you heard, giving us a download of your own experience in the field. We'll be back with part three of episode two, our innovation segment very shortly.

Matt George (00:58:31):

Hello, listeners. And welcome back to the third segment of episode two of the Sensory Friendly Solutions podcast. We loved hearing from Maureen Bennie, the founder of the Autism Awareness Centre. We loved hearing from our leader, Christel Seeberger on what really hit home with her in that second episode. And as always, we want to point you to real world solutions. We want you to have the tools, the tactics, the strategies, the resources to improve your quality of life, not only in this time, but in all times.

Matt George (00:59:13):

And with that we're going to point you to the Autism Awareness Centre website. This is autismawarenesscentre.com. Maureen mentioned some really fascinating webinars and online resources available to you during this time. We did some digging on the website. The first one is that eighth sense, interoception. There's a webinar featuring Kelly Mahler who Maureen mentioned more than once as being an authority in the space. You can buy this webinar, it's pre recorded, it's ready to go, it's $20 on the autismawarenesscentre.com website. It's called Interoception, The Eighth Sense Webinar – Impact on Behavior, Regulation and Positive Mental Health. We think this could be really beneficial.

Matt George (01:00:04):

The Autism Awareness Centre also has a really interesting webinar called 10 Ways to Cope with Changes During COVID-19 and Beyond. We talk about COVID-19, hand washing routines, visual supports. It's really interesting. This is actually a free pre-recorded webinar. Once again, head to autismawarenesscentre.com. Click the webinars tab and you can engage with all of these resources.

Matt George (01:00:35):

Maureen mentions the blog, just a lot of writing here. She curates a news blog for Autism Calgary called, What in the World is Going On about Autism? Her blog minds and expands on the articles and events that she's detailed in that news feed as well as looking at current best autism resources, news stories and events on a variety of topics about autism, and ASD. The most recent post, September 24th of this year, what is anger, rumination and how does it affect individual individuals with ASD? She talks about school changes and protocols in this pandemic world that was back in August, she talks about literacy. She talks about the low arousal approach and how it can benefit a family. There's a guide to diagnosis for adults in the autism space, tons of great resources available to you so that you have the tactics, tools, strategies and resources to navigate this time and the future going forward. We'll see you back here for episode three, of the Sensory Friendly Solutions podcast.

Matt George (01:01:49):

Thank you to our sponsor, TakingITGlobal, ensuring that youth around the world are actively engaged and connected in shaping a more inclusive, peaceful and sustainable world. As part of their rising youth initiative, they're looking for young people who are inspired with ideas and ready to take action through youth-led community service grants. Head to risingyouth.ca to learn more and to become the next Rising Youth grant recipient. The podcast is also supported by New Brunswick Community College as part of the community resource awareness during and after COVID-19 applied research project, funded by the New Brunswick innovation foundation. Learn more about NBCC's efforts to transform lives and communities at nbcc.ca. The Sensory Friendly Solutions podcast is produced by me, Matt George, is engineered by the great Zachary Pelletier and is part of the Unsettled Media Podcast Network.