SEND Parenting Podcast
EP 82: Dyspraxia Advocacy with Rosemary Richings
Episode 82
Have you ever wondered how dyspraxia affects day-to-day life from childhood into adulthood? Join us on this enlightening episode of the SEND Parenting Podcast, where we're excited to have Rosemary Richings, a talented writer and advocate, share her personal journey with dyspraxia, offering unique insights drawn from her book, "Stumbling Through Time." Together, we unpack the complexities of living with dyspraxia, its impact on daily activities, and how it intertwines with conditions like ADHD and autism.
Rosemary candidly shares personal anecdotes and discusses the ongoing challenges , from time management to misconceptions about "growing out" of dyspraxia to workplace self-advocacy, stressing the importance of educating others about the condition. With practical strategies for breaking down tasks and improving executive functioning, this episode is a valuable resource for anyone seeking to better understand and support those with dyspraxia, particularly for parents recognizing dyspraxia in children
This episode ends on a hopeful note, highlighting that with the right support, children with dyspraxia can achieve great things. Tune in for an episode filled with knowledge, compassion, and a message of perseverance.
Rosemary's Linktree
Link to Rosemary's book "Stumbling Through Time."
www.sendparenting.com
Episode 82
Have you ever wondered how dyspraxia affects day-to-day life from childhood into adulthood? Join us on this enlightening episode of the SEND Parenting Podcast, where we're excited to have Rosemary Richings, a talented writer and advocate, share her personal journey with dyspraxia, offering unique insights drawn from her book, "Stumbling Through Time." Together, we unpack the complexities of living with dyspraxia, its impact on daily activities, and how it intertwines with conditions like ADHD and autism.
Rosemary candidly shares personal anecdotes and discusses the ongoing challenges , from time management to misconceptions about "growing out" of dyspraxia to workplace self-advocacy, stressing the importance of educating others about the condition. With practical strategies for breaking down tasks and improving executive functioning, this episode is a valuable resource for anyone seeking to better understand and support those with dyspraxia, particularly for parents recognizing dyspraxia in children
This episode ends on a hopeful note, highlighting that with the right support, children with dyspraxia can achieve great things. Tune in for an episode filled with knowledge, compassion, and a message of perseverance.
Rosemary's Linktree
Link to Rosemary's book "Stumbling Through Time."
www.sendparenting.com
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade. Hello everyone, and welcome back to another episode of SEND Parenting Podcast. Today we have a really special episode lined up for you. We're going to delve into a topic that often goes unnoticed but affects many lives in profound ways Dyspraxia.
Speaker 1:Dyspraxia is also known as developmental coordination disorder. It's a neurological condition that impacts fine and gross motor skills, coordination and sometimes even speech. It's not something you hear about every day, but it plays a significant role in the lives of those who experience it. It can affect everything from handwriting to playing sports and even simple day-to-day tasks like tying shoelaces. To help us navigate this important conversation, I'm thrilled to bring to the podcast our guest today, rosemary Richings. Rosemary is an accomplished writer, editor and advocate who shared her personal journey with dyspraxia in her compelling book Stumbling Through Time. Her insights and experience offer a heartfelt and informative perspective on living with this condition, and I can't wait for you to hear her story.
Speaker 1:So let's dive right in and start uncovering the realities, challenges and triumphs of living with dyspraxia. Stay tuned everyone. So welcome, rosemary, it is a pleasure to have you on the SEND Parenting Podcast and I'm so happy that you reached out to me because you are right, we have not done anything on the topic of dyspraxia, and dyspraxia is actually in five to 6% of school-aged children, and I don't think enough of my listeners, or even myself, knows enough about it. So it's a real pleasure to have you on the show today to talk to us about it, and I guess probably the first question that I'd like to ask you is to kind of, in your own words, describe to listeners what is dyspraxia.
Speaker 2:Well, the big keyword to it is coordination. Well, the big keyword to it is coordination and that can relate to everything. The big thing for children that's often introduced is motor skills fine and gross motor skills, and I personally prefer not to subcategorize it. I simplify it much more so in everyday activities, so that can be everything from arts and crafts to household things like using knives and when you first start learning all the skills around cooking, to team sports and busting and dance move, team sports and bus and dance move. But there are also the other layers to like sense of time and space, which are a big part of things, and with verbal instructions around movements and how you interact with your environment and the limitations of your environment, which are very important part of things. That time and space piece is about perception and it's about understanding how muchue it as more of a motor issue and to actually contextualize it, that it's actually more than that.
Speaker 1:Although it does primarily affect coordination, it can also affect speech or perception of time, thought processes. There's a lot more to it than I think some people maybe have in their minds or I had in my minds. I think some people maybe have in their minds or I had in my minds how does one get diagnosed with dyspraxia and when does it usually get picked up? Is it in school? Is it by parents? Who usually picks up a diagnosis or goes looking for a diagnosis?
Speaker 2:So often it is through developmental delays in things like you're walking, all the things around motor skills around the house, like learning to dress yourself or brush your teeth or do household chores. The big one for me that I told on another podcast about a month ago was my parents found that I would very easily fall down the stairs when I was learning to walk and I'd just be surprised how on earth I ended up on the bottom of the stairs. And it's little things like that that can be a sign. But sometimes it's picked up in schools, Sometimes it's a matter of a teacher seeing that something's off. But the real key piece is the GP and going to the GP, getting a referral to an occupational therapist or physical therapist who can then assess motor skills and from there make the right judgment.
Speaker 1:And make that diagnosis. And I know from talking to some parents as well that they you know with their journey with their son children that sometimes the dyspraxia diagnosis comes first, maybe because you see some of those motor things really early on in a child's development and then they can actually have other coexisting conditions alongside dyspraxia, such as ADHD or autism, so they can occur together or they can have similar traits to a degree too in some regards as well.
Speaker 2:Oh yeah, absolutely. For example, I was separately picked up on by an occupational therapist for sensory processing issues which, although it's not in the DSM-5 as a separate diagnosis, occupational therapists can sometimes treat it. But yeah, autism is a common one, adhd is a common one, dyslexia is a common one and I know that Dr Amanda Kirby, who is a very, very iconic speaker on dyspraxia research, who's a very, very iconic speaker on dyspraxia research, she has been a very careful advocate for allowing people to see the full picture of the diagnosis and see both, like perhaps this person could be dyspraxic but they could also have some dyslexic traits, rather than having to later, down the line, figure out that there's one or more others.
Speaker 1:Okay, so having more of a flexibility in terms of the diagnosis and the characteristics? Yeah, Now you've said your parents kind of noticed you falling downstairs and it would be great to hear your journey of dyspraxia. And I know you've written a book as well, called Stumbling Through Space and Time, where you kind of explain your journey. What was it like for you getting diagnosed in school and, you know, now becoming an advocate for dyspraxia.
Speaker 2:Yeah, so I was very young I was only around four years old back then, so I was only starting very, very early days of primary school. So really there are certain parts that I personally don't remember. But I do remember that it meant that I had to be put into the special education system, that I had to be put into the special education system. There was a lot of paperwork, a lot of psychological assessments and things that had to be conducted in order for me to allow myself to be put through that system.
Speaker 2:Much in the same way that I've heard is the case with the UK system as well, where you have to go through a long, long series of paperwork to tick all the boxes, and that was a big part of things early on. And then really from there it was pretty much a matter of every year I started a new level of education. I had to then go show this paperwork, start all over again, figure out who would, how people could accommodate me properly with a new educator whenever that happened, and that was really the pattern part. And then as I got older it was sort of a different thing because I was diagnosed in the 90s, so that was really the end of them thinking of it as a childhood thing. So the big thing was that it was a bit of a trial and error to figure out what that could possibly look like as I got older, from teen years to adulthood, and that took a long, long time, I found.
Speaker 1:Yeah, I suppose because it was originally thought of as just as a childhood condition that you would kind of grow out of, but now it's considered a lifelong condition in terms of how it can impact your life, in terms of how it impacted you as you've grown older. What are some of the things that you found challenging? Or how has it progressed from, you know, from difficulty with walking and getting dressed to challenges as you grew into teenage years and as you grew now into an adult?
Speaker 2:Yeah, a lot has been about time.
Speaker 2:I found the hard lesson I learned when I was an adolescent was that everything to do with the coordination tasks although I had occupational therapy for it, physiotherapy for it, and they did a wonderful job all that gets thrown right out the window as soon as I'm in really any sort of situation of stress, and that meant that there was a whole period of time where I was late for everything all the time, because I just underestimated how much time it would take me to do makeup, brush my teeth, brush my hair and then get out the door, and how much time it would take to then go from my home to school.
Speaker 2:So I really I had to learn to live my life as always, thinking that things will take way longer than I assumed, always pre-planning everything I need long, long before I need it, and that was a big part of things for me early on, and then after that it was a matter of figuring out in workplaces how that translated, because of course, there was the layer of sensory issues and instructions that I had to figure out how to communicate, and I wasn't my own best advocate yet, and ever since I've found that that's quite a common one with theracics, because people are so used to people not really knowing what it is of others knowing on the outside, that you seem quote-unquote normal, but then it being somewhat confusing that you would need another layer of support and then finding that language to have the right balance of saying I need that support but I also have strengths, to not then be stigmatized.
Speaker 1:Yeah, and being able to yeah, as you say advocate for yourself. It's interesting you talking about the time management things because it does resonate kind of with ADHD as well, whereas it's not so much like the planning of it but the actual perception of time or being able to repeat something in a certain duration of time is very difficult because of the executive functioning skills. So using an external timer or, you know, being able to track it externally, not internally, so you know, with like a clock that has a marker that shows, or a timer or something like that, can be really helpful for in ADHD, I know for my daughter she finds it very helpful to have you know, to have that external timer to know, to understand what you know, what time is passing and when it needs to be done by. Is it a similar kind of situation or is it more of a planning situation?
Speaker 2:Like you, you know you need to get somewhere and then thinking about how long it's actually going to take you Both, I would say it's both that because, of course, for things that are like, I need you to just to use an example off my head I need you to write this document by like four days from now. Then the big thing for me would be okay. How long would the first draft take? How long would I need to then go through the revisions? How long would I need to then talk to these three people and go over what they said? And that would involve a technique similar to what you described.
Speaker 2:But, um, also, I mean, there's always the the need to get from point a to b, and that's where the extra like planning and organization parts of things come into play. And I've kind of had to memorize a pattern of like, almost memorizing that something is 20 minutes away, rather than just intuitively knowing that it's 20 minutes away. And there's always a process of looking up something new, with people to figure out visually, like what a space looks like and what its limitations are and how you get there.
Speaker 1:Yeah. So you have to really be use tools and break it down into chunks, which is, you know, very similar to what I, what I do have my daughter of ADHD too, because doing something in four days that's way too far in the future and it's it's too insurmountable. So breaking it down and then having accountability at each step of the way really helps to get to that end goal, because it's too big otherwise to deal with. So it's interesting.
Speaker 1:There's quite a lot of crossovers that I can see in terms of my knowledge base, because I would definitely say my knowledge base of dyspraxia is minimal and my knowledge base of ADHD is probably maximal. But I see a lot of correlations there, especially with the time and place things and also probably with fine motor issues as well. That's also quite common in ADHD as well as dyspraxia, I would imagine as well. And in terms of you know your working life and you know people are pretty, I think now more clued into dyslexia, even to ADHD and autism in the workplace. How have you found it with dyspraxia? Do people go like what, what's that? Or? And you have to explain it, or do you find that there is a general knowledge about it?
Speaker 2:I do have to explain it. Really, I've just planned things assuming that the person I'm talking to doesn't know, like that's become so normal for me and I, more so, have had to just have it less, as I have dyspraxia, and more as breaking it down in terms of like, how would I process feedback? How much time would I need? Would I be too overwhelmed if I had three meetings that day versus four and more? So, breaking it down in terms less in terms of, just straight up, I have dyspraxia and more in terms of what that means for my work life.
Speaker 1:Okay, well, that sounds very helpful and practical actually for the people that you work for, so you can tell them exactly how you need it, which is great. Are they receptive and do they accommodate?
Speaker 2:hopefully, much younger and I was much more of like a people pleaser person, so I was saying the word no less than I really should have, and I think that meant that I ended up working with some people that were like really horrible fits for me generally. So that was really when, like, there was less kindness about it. But as I got older and I got more focused on specific areas and specific specialties, then it just kind of became well, if they're not willing to accept me for what I can't do as much as I can do, then they're probably not worth my time anyways.
Speaker 1:That's the beauty of getting older, isn't it? I think that you know you start to develop that or lose that desire to people please as much, and is that kind of what inspired you to write your book, or what was your inspiration?
Speaker 2:It was a general idea I had for a long time, like it just became quite normal. Every time I had a new social situation, a new workplace situation I was introduced to anyone new that I had to start all over again on explaining and really the way I framed it was how anyways, how I would explain it in terms of just simplifying it to stories in my own life, and that makes more sense to people that are like super specialists in medical and science areas than anything else. So that's just what made sense to me and it felt like kind of a coming out, in a way, of the condition itself more than I had before and I think I finally just released it because of where I was emotionally and in terms of confidence. I thought of doing it, but finally I was in a better state with that. So I just was like you know, I'm just going to write those stories out.
Speaker 1:I think stories are very powerful ways to get messages across, but they do take a level of sharing your soul to a wider audience, which is also making yourself vulnerable. But it is a really great way to illustrate to people and to have them actually understand what it's like through the power of stories. If you were looking at those stories, is there any ones that you'd like to share today? That would maybe help some parents who are listening who might suspect that their child has dyspraxia, or a teacher that might be listening that might suspect someone in her class. Are there any stories in your history or in your experience that could help to help those individuals maybe recognize if a child is struggling?
Speaker 2:Yeah, the one that I often that does quite well in the parenting circles because it's always wonderful to hear that you can connect so well with another sibling and another family member is well. My brother was always a dear supporter early on when I was first diagnosed and I would argue he still is and when I was first learning how to catch a ball it wasn't working out so well for me because there was always a delay in knowing what to do once it got to me and really I just found that one day that it was a matter of he had shouted the words duck, uh. So many times that it was like I memorized that sequence I. It took a little bit more time for me to understand that when someone says duck, you duck from a ball and to then see that as a pattern, it didn't come immediately. That was very much. That's very much one that has resonated with a lot of people.
Speaker 1:Okay, so am I understanding this correctly, Rosemary? Your brother would throw a ball at you to catch. It would smack you, and he would say, just before it smacked you in the head, he'd scream out duck. And you just stand there and the ball would hit you in the head and that's what highlighted to your parents.
Speaker 2:They were amazed for me to even have that motor skills reaction, though it was kind of a win for the family. He's now a military man and I think it very much works with his kind of hands-on way of throwing you in the field and just getting you to try things.
Speaker 1:So now before. So you know, if someone was to throw a ball for you now, they should scream duck before they throw it and you might catch it. Is that what you know?
Speaker 2:No, I catch quite well. People are always surprised but, yeah, for some reason that just worked for me, right?
Speaker 1:And in terms of teachers, like what would be some of the signs that a teacher should would look out for, or is it something that you know gets picked? I mean, if I look back into like parents that I know who've gotten this diagnosis, it usually comes up in an ed psych report. Is usually where it comes up, not usually from the teacher. There's something not right, the kid is struggling in school and they recommend let's get an ed psych report so educational psychologist report I shouldn't be using acronyms and then the dyspraxia comes out of that report. Is it something that teachers pick up on, like they pick up on dyslexia, or is it something that is you kind of have to go one step to a higher?
Speaker 2:knowledge base. Honestly, not often. I only mentioned that because it is. If they they have a really good relationship with them and they'd they'd somewhat been familiar with it before, then there would be a possibility that they might pick up on something being off, but not in a completely formal, bureaucratic sense.
Speaker 1:Yeah, more likely the parents would pick up on it because of walking issues, like you said, going up and down stairs, issues, trying to put on clothes, things like that, and having it become challenging and then looking for further help as to why the child is struggling from the GP and then getting referred.
Speaker 2:Yeah, although the one thing not a lot of people are aware of with dyspraxics that I think is like more a surface behavioral thing that when you're looking for it you can really find it if you know what you're looking for is there's this instinct to freeze. In situations of stress, where you're in a crowded environment, it's really noisy, you have someone saying go that way, while a bell goes, while there's lots of music, while there's lots of shouting, to then freeze while all that is going on in the background. And that is the only real example I can think of that freezing might happen and physically stop someone from knowing what to do next or remember what to do next.
Speaker 1:Okay, so almost like a deer in headlights kind of scenario. Yeah, yeah, it's super interesting, and you know in terms of what kind of support. Yeah, yeah, it's a. It's a super interesting and and you know in terms of what kind of support they put in place in school. What's, what did they do for you? What, what, what I mean, and I guess again this could go back to an educational psychologist report, because they would then say what supports need to be put in school. But are there common techniques you've mentioned your brother's technique with you that are used in schools or used by parents at home to help dyspraxic children.
Speaker 2:The main thing in a classroom context is about having the option of an alternate environment and more time because of that element of time management and different look at time as a concept to reduce stress, because it's very stressful being in noisy classroom environments when you're dyspraxic especially, and that can really help with allowing more focus. Also, the big thing is handwriting. Often dyspraxic children, a big big problem is when you're first learning how to write by hand. It physically hurts, like it really really physically hurts. Pre-ot occupational therapy and that is another one. If children can have the option to type or another way of doing any kind of written communication, yeah, then that can really help. Although if you can get that OT piece, that's really helpful because obviously in everyday life it's a useful life skill to be able to write by hand sometimes. But in something like a classroom you really really need that option so that, like children don't start affiliating writing with pain and that doesn't distract from the actual learning itself.
Speaker 1:Yeah, hopefully. You know. In the UK technology, although schools are technology abled, it's not as accessible as I would like to see it, because I've seen what a huge difference technology can make when writing is difficult, because also a lot of kids with ADHD have fine motor issues. My daughter also has cerebral palsy, so left-sided, so she has fine motor issues as well and technology has made it go from something that's so difficult.
Speaker 1:The way I like to describe it is if you're right-handed and you try and use your left hand, it's super difficult. You have to concentrate so hard and that's what writing is like for someone who struggles with fine motor or even more so and I didn't realize, with dyspraxia. That actually even causes pain. But you know the grip that she has and how hard she presses to get the words down is so you can't think anymore or have free thought. But then you use technology where you can use dictation and all of a sudden she's writing stories. You know, because what's in her mind now can come out without that painful barrier of the fine motor.
Speaker 1:But to your point, it's super important to keep trying to write and getting you know, getting that practice in, because it is sometimes important to be able to write a note that it's also helped strengthen your hands for doing things like buttons and zippers and all the other things that you need fine motor for your hands for doing things like buttons and zippers and all the other things that you need fine motor for. So getting that occupational therapy and physical therapy is important to well. Occupational therapy for fine motor but yeah, but it's. I wish that technology was available for more children who could benefit from it and not have to be in that. You know, keep writing your lines. So I think those are some really good ways that children can be supported in school in terms of dyspraxia and in terms of the awareness in schools of dyspraxia. I mean 5% to 6% of school-aged children is quite a large number of school-aged children you know, so I'm surprised it's not more well-known.
Speaker 1:And you know you've mentioned to me before that there is the Dyspraxic Foundation as well, which has sadly closed its doors. You know what is the advocacy kind of movement within dyspraxia and how to make it more known, because knowledge can then be support which can then help kids to overcome this. What would be some of your ideas or thoughts on that?
Speaker 2:Well, it isn't a very unified cause right now. Unfortunately. It's quite fragmented in terms of the groups themselves, but there are quite a few good Facebook groups online. There's a dyspraxia adults one. There's also things like my friend, crystal Shaw. She runs the dyspraxia magazine and that has been a great way to make more accessible to people resources and also everyday lifestyle thinking about what it means to live as a dyspraxic person right now, and people like her have been really useful.
Speaker 2:There's an emerging project I just filled out a survey for called Dyspraxia Collective. That is a mix of researchers and lawyers and academics and individual advocates that's starting to show up and most of the major advocacy has been within the larger neurodiversity advocacy bubbles right now and little pieces of people starting to say, look, we need to talk about this more. Dyslexia is in that conversation, but what does dyspraxia mean? In the context of that and really looking around those online communities, there's starting to be lots of great content creation projects showing up. There's people like to me, the black dyspraxic who is one of the first uh person of color advocates in the dyspraxia community I've ever seen. But because and that's amazing because uh, neurodiversity unfortunately doesn't get great sort of awareness in people of color communities.
Speaker 1:And he has started to give a voice to that and help people understand what that children have, so then you can put the right solutions in place to help them. And that's great that there are resources out there and it makes sense. You know, because children have. You know they can have dyslexia and dyspraxia, or ADHD and dyspraxia or just dyspraxia. You know joining forces, you know, with other organizations, because dyslexia is quite huge, right, a lot of people know about, a lot of schools know about it. But you know making sure that we're not missing a trick in terms of dyscalculia, dyspraxia. You know, and enabling educators and parents to know and then supporting them with tools and techniques that have been tried and tested to work so that you know kids can go on keeping their self-esteem intact. And you know being supported to progress and to learn and to go on and live life. Being supported to progress and to learn and to go on and live life. That's very much what we've tried to do.
Speaker 2:I'm on the board of trustees of Dyspraxic Me, which is a young adults peer network for dyspraxics, and that's very much in reaction to all this what we've tried to do, and even before that there was so much insight. You could get so much valuable insight from looking beyond that and seeing what that means in the context of ADHD and autism and various other things under the umbrella.
Speaker 1:Yeah, and you know I really appreciate you reaching out to me and saying hey, olivia, you haven't done anything on the Send Parenting podcast about dyspraxia.
Speaker 2:And.
Speaker 1:I'm like, oh, you know, so my bad because I haven't. You haven't done anything on the Send Parenting podcast about dyspraxia. I'm like, ooh, you know, so my bad because I haven't. So I think it's been really helpful to have this discussion today. One thing that I always ask all of my podcast guests at the end of the show is kind of to ask if you were to give three top tips from today's discussion that parents could put in their back pocket and take away with them, what three top tips would you give from that lens?
Speaker 2:I'll give it more from looking back to when I was a dyspraxic kid point of view. Okay, well, the first one is no multitasking is no multitasking. Try your hardest to if you do have a dyspraxia kid or a suspected dyspraxia kid to make everything you do every day, every task, every little chore. Make it a one thing at a time.
Speaker 1:thing not a 20 things at the same time thing. I have to stop you there because I can't tell you how many times my daughter screams that at me. Would you stop telling me so many things at once, please, yeah, so I have to just say that is a really good one for moms to listen to out there, including myself.
Speaker 2:That and also, just if things are getting emotional and things are getting hard, give your kid a moment to breathe, just take a second, just go somewhere quiet and just allow that silence and just try again later. And also that message of hope, that message of you have to keep sticking up for yourself and not listening to everyone that says that no, you can't. There's always a way you can. And just keep trying, just keep seeing what you can do.
Speaker 1:I love that. That's a really great message to end on that there's always a way you can. It's just might be a different path than other people, but there's always a way you can. I really like that. They should make a bumper sticker out of that. People don't use bumper stickers anymore, but in my old age we used to have bumper stickers and that is a wonderful motto. To end on, rosemary, I want to thank you very much for taking the time to speak to us today and to opening all of our eyes and ears to dyspraxia.
Speaker 2:Yeah, no problems, lovely to be on here.
Speaker 1:Thank you for listening. Send Parenting Tribe. Please, if you haven't done so already, take the time to rate the podcast. It helps bring the show to more parents' ears. I know I ask this a lot of you and we have seen some movement, but more ratings would be really appreciated. I want to wish you and your family a good week ahead navigating the end of school or, some of you, starting the summer holidays. Kids are going to be home for a while. Enjoy Till next week.