We reached out to Emilie and Lucy who run a group especially for parents with dyspraxia to find out a bit more about them, their condition and the community they are building.
Could you tell us a little bit about you?
When were you diagnosed with dyspraxia, have you always known you had it?
Lucy: I was diagnosed in year 9 of secondary school, after a long struggle to even get the assessment, we started in year 7 when my form tutor said she thought I had dyspraxia, I was very slow to grasp anything, could never keep up with copying off a white board & would generally fall behind very quickly.
Emilie: I’m 29 and live with my husband and our 2 and a half year old. I resigned from my job when my maternity leave finished so that I could continue to care for our daughter full time. I have recently started a training course to become a breastfeeding peer supporter, which is something I’m really excited about- I’ve never had an inclination of a “career,” but working with and empowering parents and their babies is something I’m realising I have a lot of passion for. I’d love to go into nursing and/or midwifery when I have more time for studying.
I have never received a diagnosis! The closest I came was when I was about 14- a teacher suggested that dyspraxia might be the cause of my issues – no focus in class, even less focus with homework, despite clear “ability”, and the school arranged for me to be tested. Frustratingly, the test turned out to be for dyslexia, which I knew wasn’t an issue for me, so was a waste of time for all involved, and nothing more ever came of it.
Now that our daughter is becoming a small child, I’m needing to be more organised than ever, which has prompted me to spend a lot of time in the past 6 months thinking about the ways dyspraxia is affecting my ability to manage my life. I have approached my GP surgery, who are currently helping me to chase a diagnosis in the hope that I can get some proper support- I’d love to get some help with ways I can improve my management of my- and my daughter’s- day-to-day life.
Does it affect you daily?
What does your own dyspraxic world look like, what are your most common traits?
Lucy: Yes, I would say it does, I’m always late, as there’s always something I’ve forgotten & have to go back for, my timing with cooking is awful, I’m always burning stuff, the family smell burning & they say, oh mum’s cooking again, lol, oops… My sense of direction is terrible, I always come out of a shop & go to go the way I’ve just been.
Emilie: Yeah, constantly! I’d be hard pushed to find a time it isn’t affecting me. Like Lucy, I’m late for everything (or on the rare occasion I’m not, I’m embarrassingly early, rather than pleasantly on time, or it’s the wrong day entirely…). I’ve made myself a timetable for the obvious things, because otherwise they don’t get done (dishwasher, washing my hair, cutting my daughter’s nails, sweeping the floor…).
My most prominent traits are my lack of organisational skills and my short term memory. I’m so messy and my life is very scatty, and it’s mostly down to a combination of those two. I manage to disguise the clumsiness to a degree because it’s something I’ve noticed and therefore worked on my entire life, but it’s still a big frustration and I manage to break something approximately once a week… Oh, and let’s not forget the anxiety! That’s something that’s really affecting me at the moment, too, mostly as a result of those other three symptoms.
You have started up a group for parents who have dyspraxia. Why?
Lucy: I always feel that I’m useless & completely alone & with the way, that I see how my brain works, never feel as if anyone understands & with parenting 2 small girls one who is 6 & one who is 4, I always feel frustrated, can never do things quick enough, I thought maybe talking to other parents in the same situation, they would understand exactly where I was coming from.
Emilie: The group was set up by Lucy, but was something I’d been considering for a while, but I was nervous of taking the helm of something when I didn’t have a diagnosis- I sometimes feel a bit of a fraud. I was passionate about being involved, though, so when I saw she’d created the group, I reached out to join her.
It was something I had felt a need for- I am in various parenting groups on Facebook, and I’m in a couple of dyspraxia groups, but there was nothing that overlapped where I could talk specifically to other parents with dyspraxia. Certain aspects of parenting are quite difficult to perceive until you’ve experienced it first hand, and that is the same for dyspraxia, so those two things combined create a relatively niche experience.
Add general anxieties that come with being a parent to the anxiety that is often associated with dyspraxia, and you can find yourself in quite a whirlwind, and it’s very reassuring just to put that out there in a place where you know that others will be able to empathise.
Where is it based and how often do you meet up?
Lucy: It’s a group on facebook for parents with dyspraxia & we generally talk about our experiences throughout the day or if we have had a situation that you need to vent about, just general chit chat really.
Emilie: We try to think of things to discuss frequently, but with us all being dyspraxic, that can often get forgotten! I might make myself another timetable especially for the group, actually 😂
Were you nervous dyspraxia would affect your ability to be a mum? And does it?
Lucy: Yes I was very nervous how I would cope, but I do it in my own way & my family are very used to my ways, my husband supports me massively.
Emilie: Until around 12 months ago, it wasn’t something that I’d thought about since I was 14, mostly due to not realising it was anything more than a general clumsiness, but I saw an infographic a while back that described lots more symptoms, and that is what set the cogs whirring.
Obviously, though, those traits were there, just without the dyspraxia label, and yes, I was definitely incredibly concerned, especially with the plan being to stay off work to care for her. Now I’m more aware of my difficulties, I’m working all the time to improve the ways I approach tasks I know I will struggle with.
Those struggles will always be there, though, and it’s a constant fear that I’m going to deprive my daughter of certain opportunities to learn and do wonderful things, specifically because I can’t get a grip on functioning as a normal adult- I beat myself up about it a lot.
How many members are in your group?
Lucy: 45 members
Emilie: We are still quite small, as it’s quite a niche, especially when so many adults aren’t aware the condition even exists. We would love to build our membership, the support that we as a network of people with similar experiences can provide to each other is invaluable, and it would be wonderful to share that further. Please do tell your friends!
What do you cover in your group – what topics?
Emilie: We are still in our early days and haven’t developed an approach for regular discussions, but all sorts has been covered, from the lack of recognition of dyspraxia to how our dyspraxia affects us as individuals, and as parents. We try to talk about the positives too, and we talk about ways we can better ourselves. We talk about routines, we talk about sleep (or lack thereof, for all sorts of reasons!), we talk about patience, and we talk about our little daily achievements. Just things you might like to talk about when you’re chatting with friends.
More mums or dads or a mix?
Lucy: More mums but all welcome.
Emilie: Yeah, more mums, but we do have some lovely dads who are active too! We’d love to get more of a mix in to get lots of different perspectives.
How useful is it to meet and chat to other parents with dyspraxia?
Lucy: For me very, as it makes me realise I’m not alone.
Emilie: It’s really nice. It’s a good place to have a little vent or share an achievement that would seem insignificant elsewhere. It’s a shame we aren’t closer together so we could have physical meets- maybe if the group grows enough, this might be a possibility in the future!
How did you feel before you set up the group?
Emilie – I don’t know what to say here that hasn’t been said elsewhere!!
What positive character traits that have that you think have come out of you having dyspraxia really help you as a parent?
Emilie: I have a lot of empathy, and I’ve found that I’m quite intuitive- I can really see when someone is struggling with something and I love supporting my daughter, I feel like it has meant that I am able to be more patient with her when it comes to trying out new things.
What have you learned about life (any wisdom) from living dyspraxically that you’d like to pass on to your children?
Emilie: One of my biggest rules in life is to give people the benefit of the doubt, and I definitely think that’s down to living with dyspraxia – people can assume that my approach is down to simply not caring enough, which couldn’t be further from the truth, and trusting that people are doing their best really can make a huge difference.
Any advice for a dyspraxic adult who is about to become a parent for the first time?
Lucy: Don’t panic, all will be ok, your children will grow around you & your ways.
Emilie: Trust yourself and your instincts! And love yourself. Trust that your love for your children will be the drive you need. And make lists. Lots of lists.
As a mother I’m sure you’re always on the go, how do you and other dyspraxic parents ensure you don’t forget anything. My short-term memory is hopeless!!
Lucy: Very difficult, I try to make lists, but sometimes forget to write them, I am constantly going over things in my head, muttering to myself throughout the day.
Emilie: Yep, lists. As I said earlier, I have a timetable stuck to the fridge, which includes a daily reminder to pick out mine and my daughter’s clothes for the following day, along with a list of the most essential items I may need with me for any time I am leaving the house. Especially since she has potty trained – spare clothing is now essential! And even more important now that she has been diagnosed with a potentially anaphylactic peanut allergy a couple of months ago!! I need to have that epipen with us wherever we go- it’s simply not an option to forget it!
How do parents join your group if they’d like to?
Lucy: They have to answer the questions as we want this group to be for parents who have dyspraxia, so we can support each other with our daily struggles
Emilie: Yes, anyone can join as long as they are a dyspraxic parent- or expecting, and all we ask is that when you request, you answer our joining questions. That is the only restriction we have in place, purely to ensure the group stays relevant and on-topic, and it means we are all going to be understanding of where we each are coming from- it’s really important to us that it is a safe, judgement-free place for our members.
How important is it to have a partner/co-parent who understands your dyspraxia?
Lucy: I would say it’s a must, if your partner doesn’t understand dyspraxia then they don’t fully understand you.
Emilie: Agreed. It can be very frustrating to spend a lot of time in a closed space with a dyspraxic person for people who aren’t dyspraxic even with that understanding. If the understanding isn’t there, it must be infinitely more frustrating for both parties.
Any advice for a parent who feels a bit lost?
Emilie: Reach out. To anyone. There is someone who understands somewhere. If not friends or family, then try a doctor, a health visitor, or even a Facebook group (see where I’m going with this…? 😉).
Seriously though, parenting is hard, and we get that as much as- if not more than- anyone, and that’s what we set the group up for, so please do come and say hello- we’re very friendly, and it’s very likely that more than a couple of us has been there, or is where you are right now.
Talking can make such a huge difference, and you never know, you might help someone else when you speak up, just by letting them see that they aren’t alone.