Living Life with Dyspraxia with Rosemary Richings

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Transcript of Episode 66: Living Life with Dyspraxia with Rosemary Richings

DANIELLE: Hi, everyone! Welcome back to the Neurodiverging Podcast. My name’s Danielle Sullivan and I’m your host. Today I’m here with Rosemary Richings who is a writer, editor, author, and public speaker specializing in the topic of neurodiversity and disability.

Rosemary lives with dyspraxia, which is a condition associated with difficulty in performing coordinated movements, and so a lot of her advocacy and freelance work is around accessibility and is rooted in her experience of dyspraxia. I think dyspraxia is one of those aspects of neurodivergence, a lot of us deal with it, but it is drastically underdiagnosed in my opinion, and so I’m very excited to give you this information from Rosemary and provide you this resource today.

Before we dive into our interview I just want to thank my patrons for supporting this podcast and Rosemary for donating her time for it. Patrons we really appreciate you, you make the wheels churn over here, and we wouldn’t be able to do this podcast without you. If you’re interested in becoming a friend of the show or a patron, please check us out at patreon.com/neurodiverging. Patreon is just a way to give a couple of bucks to support projects that you think are important in the world, and in return, you get some great perks back, so patreon.com/neurodiverging.

So Rosemary Richings is the cofounder of Dyspraxic Alliance, which is a support group run by dyspraxia advocates who are dedicated to providing support, advice, online safety, advocacy, and more. The group’s mission is to welcome and unite anyone who is looking for dyspraxia support and advice, please check out their link in the show notes, the link to the show notes is below. 

Rosemary uses her experience in the neurodiversity activism communities to better inform her work, as she is always taking into consideration the needs and interests of the community she interacts with on a regular basis. Rosemary also recently published a book—congratulations to Rosemary! It’s called “Stumbling Through Space and Time”. There is a link to how to purchase her book and more information about it in the show notes as well. Without further ado, welcome to Rosemary Richings!

What is dyspraxia and what causes it?

Welcome, Rosemary to the Neurodiverging podcast. I’m so pleased to have you here today, thanks for coming on!

ROSEMARY: Yeah! Thanks for having me on. 

DANIELLE: I was so glad to get your pitch. So, I know that you are an advocate for neurodiversity in general, but specifically for dyspraxia, and that is something we have not talked about on the podcast enough for how common and I think misunderstood it is, so I’m really excited to talk to you today about your experience with it.

ROSEMARY: Yeah, it’s very much sort of the misunderstood sibling of this whole sort of bubble of conditions, so, yeah, it’s always good to get it out there for sure.

DANIELLE: Yeah. I kind of suspect that as we’re talking about it, a lot of the listeners will be like, “Oh, this sounds familiar.” Would you mind just kind of getting us started with a little bit about who you are and your experience with dyspraxia, but also in general?

ROSEMARY: Yeah! So I am a freelance writer, editor, public speaker. I work in the area of neurodiversity and disability, basically on making resources and editorial content both accessible, but also not tone-deaf to all of the elements of inclusive language and disability-related issues and experiences and things like that.

But I am also an author of “Stumbling Through Space and Time: Living Life with Dyspraxia”. Which is an educational resource that uses stories from my own life as a dyspraxic person as well to try and help people understand, in very simple language, what that actually means.

DANIELLE: We’ll have a link to Rosemary’s book in the show notes, so you should check it out. I was able to read a couple of excerpts from it and I found it really (stammers), like, educational but also just the way that you laid out your life experience. I’m somebody who reads a lot of lived experience kind of memoirs, but it really did give a good indication, I think, of how a lot of our experiences with dyspraxia can be, so I do recommend it if folks are interested as we’re talking.

But would you mind, kind of, giving a summary of what dyspraxia is? I have seen it referred to, I’ve talked to OTs who say one thing, neuropsychs say another thing, and then folks with lived experience of it who say another thing. What’s your take on—how would you define dyspraxia or talk about it with others?

ROSEMARY: Well, it’s a coordination and movement condition. Basically, it is a wire in the brain for all the different, complex movements we do every day in terms of moving through our space, moving through our environment, figuring out motor skills and all those sorts of things, and just getting a general judgment of the limitations of our own environments.

DANIELLE: Thank you. I think I’ve seen it referred to as kind of a piece of the larger sensory processing disorder or sensory degradation disorder complex, I guess, because SPD can look like so many things. But specifically where your body is in space and, like, knowing where you are. 

You may hear in the background, I’m sorry listeners—we have a sensory swing downstairs for one of my children who is dyspraxic, and I can hear them on it and I need to WD-40 it, so Rosemary if you hear a horrible noise I’m sorry about that, I’ll try to edit it out. But one of my children—

ROSEMARY: I’m used to all the good stimming, so.

DANIELLE: I know! We are a stim-friendly household. I would never tell them not to use their swing, right?

ROSEMARY: Yeah. 

DANIELLE: But (laughs), yeah, one of my children is formally diagnosed dyspraxic, and one of my kids is probably but we haven’t done the formal thing, yet. I know it is comorbid with a lot of other neurodivergences, like, you know, autism, ADHD. I’ve met folks with borderline who are also dyspraxic, I’ve met folks with just larger SPD traits who are also dyspraxic, and then I think it exists in neurotypical individuals as well if I’m not wrong. I will find out and put a link in the show notes about that.

But it’s, I would say, maybe a widely—not misunderstood, but not widely known about. Has that been your experience? 

ROSEMARY: Oh, yeah! Yeah, I’m used to basically all circles I got into, all things I’m asked to work on, to really have to, like, describe it in detail. It wasn’t really until much later in my life that I started to, like, actually know other dyspraxics and, like, come across OTs and medical practitioners and such that, like, actually understood it.

What are the struggles of dyspraxia?

DANIELLE: Yeah. So, what is sort of your lived experience of dyspraxia? What are some of the challenges you have or things you noticed that seem to be different from the way your body works compared to other folks?

ROSEMARY: Yeah, I mean for me I was diagnosed really young, so a lot really had to do with the complexities of people only seeing a portion of the picture. Like, they only saw a portion of the picture in a sense that I would describe all these things that were going on with me and they wouldn’t fully see it for what it is. And I think the only reason despite that I was able to get a diagnosis was because my dad is English and he emigrated to Canada before I was born, and so he still had some connections within England and got ahold of some relevant resources, and that was really what unlocked us being able to, like, put a word on it in general. 

DANIELLE: Yeah. What were some of the things that were happening for you that made your parents seek diagnosis?

ROSEMARY: For me, it was early on. It was things like I was reaching a lot of milestones a lot slower like learning how to walk, learning how to ride a bike, learning how to dress myself, things like that. Although my dad often compares it to an incident where I fell down the stairs, and they were starting to see that perhaps there was some control-with-my-coordination issues that could be something much, much bigger than that.

DANIELLE: And are there other sorts of traits or symptoms associated with dyspraxia that you’re aware of, besides, sort of the—I’ve often seen it referred to as like, “clumsy child syndrome,” I’m making air quotes listeners because it’s not a great name (laughs). But what are some other traits that are associated with dyspraxia? 

ROSEMARY: Yeah, a lot of it is about, yeah, like I said, navigating through your environment. There’s a delay in understanding that if you’re in a crowd and one person turns right you might need to turn left, or getting easily overwhelmed by having to take in a lot of sensory details. Or navigation-wise, easily getting the concept of left and right or up and down really easily mixed up. And motor skills I find is a very confused term, and examples of that include, like, team sports, tying your shoelaces, basic grooming activities, things like that.

DANIELLE: Yeah. I was thinking about a couple of clients I have who are autistic or ADHD and are trying to learn how to drive and have reported difficulties, you know, paying attention to all the sensory stimuli, and telling their right from left, and figuring out how to copy what other people are doing with their gestures. And I know that that can sometimes be, I mean can be an aspect of several different neurodivergences, but I’ve seen it in a couple dyspraxics, too. 

ROSEMARY: Oh, yeah! No, no, I mean I admittedly, I always say this openly to help other people feeling less shamed of this, but I’m in my thirties and I still don’t drive because I never had an accessible environment to learn or anywhere where, like, I felt I could comfortably learn and people would understand my issues. And I hear about situations in the UK of how there are some drivings schools where you can go and they’re actually formally trained in learning difficulties, and the concept of that is just amazing to me. I really want to see that spread more widely.

DANIELLE: Yeah, I would love to see that. We have some of that in big cities in the United States, but I haven’t seen it, and like I live in a suburban area now, and there’s no really great accessibility option for anyone who doesn’t learn to drive in sort of the traditional from teenage years to young adult years way, and it’s a real shame because there’s so many folks who could very much be good drivers if they had the supports available to them.

What are social challenges of dyspraxia?

What motivated you to actually write your book about your experiences? 

ROSEMARY: Yeah, a lot was just based on the fact that I had gone so many years having no real sense of community in terms of other dyspraxics around me, and it was just really lonely feeling like I always had to be my own educator everywhere I went to get any kind of support. So it was always in the back of my head that one day I wanted to just, like, write it out and explain it, but I never knew for sure where that would go.

If I hadn’t had the mentorship and support that I had through writing groups and also a mentor that I worked with early on, then I would never have been able to finish it, because it was so hard to put all these, like, really personal experiences into words.

DANIELLE: Yeah. What’s the reception been like since you put the book out?

ROSEMARY: It’s done really well with a lot of parents of recently diagnosed people. I’ve had people reach out to me on social media and say that it’s been really comforting for them, and I’ve had a lot of adult diagnosises (sic) as well say something quite similar. And that’s been great because that was very much what I was going for, because I was just really, really frustrated that, like, most of the books on this subject were written in medical language or by doctors or stuff like that, which has its value but, like, if you’re just an average person getting to know this then, like, that’s very overwhelming to read.

DANIELLE: Absolutely—

ROSEMARY: Very difficult. 

DANIELLE: Yeah, yeah. When my kiddo was diagnosed I knew a bit about dyspraxia but not—you know, I’m not a medical professional, I’m not medically trained, I’m not trained as an OT. Like, there are some specialists who have a lot of training in motor coordination and the nervous system and all these things, and trying to find resources that were accessible, that I could understand, that wasn’t me digging through research papers that I found on PubMed or whatever, was really challenging! And especially resources for adults.

Like, my child’s a child, obviously, but whenever I have a client (laughs) who is saying things and I’m like, “Maybe you want to check in with an OT,” I can refer them to an OT but if they don’t have access to an OT I’m really excited your book exists, because it’s now it’s like, “Well maybe there are resources that they can access that are not PubMeds or an OT that they can’t afford or otherwise access—”

ROSEMARY: Yeah.

DANIELLE: “…because of the American medical system.” So, I completely—I mean, you must be more familiar with it than me, but I completely agree that there did seem to be a gap in and a need for this kind of material.

What support do people with dyspraxia need?

ROSEMARY: Absolutely. I mean, I’ve really been part of, a lot of my advocacy work has been around, like, connecting up with advocates around the world and being part of peer-support communities for young adults and teens, and I’ve helped out a bit with the Dyspraxia Magazine as well, which like—and really, I didn’t see anything like that up until quite recently.

DANIELLE: Yeah. Are there other resources—so you mentioned your book, obviously, and the Dyspraxia Mag, and if you were to refer somebody to a peer-support group or an advocacy group that works with dyspraxia, are there specific ones that folks who are listening might want to check out? 

ROSEMARY: Well, the one that I’m on the board of, Dyspraxic Me, unfortunately, that’s London only, but Dyspraxia Alliance is good, Dyspraxia Magazine is good. “Caged in Chaos”, Krystal Shaw’s YouTube channel, she’s doing a lot of great work around sharing her lived experience for a while, and, yeah, those are really the key ones.

DANIELLE: Thank you so much, that’s gonna help a bunch of people. Would you be willing to talk a little bit about your advocacy? What kinds of things do you work on? Do you work on dyspraxia solely or on other types of neurodivergent advocacy, and what are some of the messages that you’re trying to get across or information that you’re trying to get across to folks?

ROSEMARY: Well, a lot of the advocacy work is in dyspraxia. There is the Dyspraxic Me organization I’ve been doing some stuff on the board for, and that’s teens and young adults specifically who are dyspraxic to try to, like, create strong sense of peer support, also just being part of creating online resources.

My much broader neurodiversity work, though, has been in terms of my freelance work, though. That has been partnering with organizations that are looking to create more accessible workplaces and things like that, but also writing for publications to try and bring light to issues in this community, and help people understand neurodiversity in general and current issues around that. 

DANIELLE: That’s awesome. So you write across a large number of publications it sounds like. So you—

ROSEMARY: Yeah!

DANIELLE: …access a lot of audience.

ROSEMARY: And a bit corporates but, yeah, as well publications, too, yeah. 

DANIELLE: That’s fantastic. What are some of the messages you’re trying to get across? 

How do you accommodate dyspraxia?

ROSEMARY: It’s largely about inclusion and about understanding what barriers are existing that don’t necessarily exist in neurotypical circles. So that we can try and create better accommodations and support, because I’m very much responding to my early experiences where it really took me many years to understand my own condition, and I found that’s the same thing with other people, so it’s try and fill the knowledge gaps and make a more equitable environment within workplaces and schools and other institutions as well.

DANIELLE: Lovely. Are there specific accommodations or supports that you could have used as a child that folks maybe with kids now might like to know about you think? 

ROSEMARY: Yeah, I mean I had some access to special education support from having an early diagnosis, but many of them were things like having an alternate environment to write, like, really focused tests and such, and, yeah, extra time whenever necessary. Really clearly visually laid out specific detail-oriented dates and times about how much time things take, because, like, that is a huge issue, too, keeping organized and understanding how much time things take.

So little things like developing a good system for having, like, a whiteboard, keeping a diary of what’s needed and when; having electronic reminders is also great. I mean, wasn’t as much of a thing back then, but—

DANIELLE: Yeah (laughs).

ROSEMARY: …I find that with my freelance work, it’s like, amazing, to have all those little reminders of, just a reminder, “Tomorrow you’re doing this at this time.” All that goes a long way. 

DANIELLE: Yeah, it makes a big difference. And what about in the workplace? It sounds like some of those translate to the workplace, like maybe time and a half or having a quiet space and certainly the reminders, at least for my workspace. Are there other things that you often recommend corporations do to become more accessible on the ground level for dyspraxics?

ROSEMARY: Honestly, a lot of that stuff definitely translates, and also, too, a big one I’m always trying to push is more than one form of communication, because it’s so easy for instructions to get lost if they’re not literally expressed and they’re about really, like, complex details. So, that’s where things can get lost and people get really lost and they don’t produce their best work, so just having the option of having things also written down or if someone wants some more visual representation, really, like, asking the person what they prefer in terms of processing information. 

DANIELLE: Yeah. Well, thank you so much. Would you be able to tell folks a little bit more about where they can find your book and anything else about you, like your website and if you have socials?

ROSEMARY: Cool, so my book it’s called “Stumbling Through Space and Time: Living Life with Dyspraxia”, and, yeah, it’s available in most major bookstore retailers, both indie and the big ones, but if you’re not sure if it’s there, honestly just ask if someone has a copy and they can order a copy. Other than that there’s of course my website which is my first my last name, rosemaryrichings.com, and I’m on Twitter, I’m on LinkedIn, I’m on Facebook, and I’m also on Mastodon and Instagram periodically.

DANIELLE: Wonderful! Thank you so much! Listeners, please check out the links below to find out more about Rosemary’s website and all the social links, and the book, especially. 

Thank you so much for joining us on the Neurodiverging podcast, today! Please, if you haven’t yet, take a minute to subscribe if you’re on a platform that allows it, to rate if you’re on a platform that allows it, it really helps us get the podcast out there to potential new listeners who might benefit from this information. 

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