Living With Dyspraxia

Podcast Episode 41. What is Dyspraxia? If you don’t know or if you do and want to know more this week’s podcast is for you. My guest, Christine Draper has written a book called My Friend Josh has Dyspraxia to help more people understand dyspraxia and, more importantly, help more people understand what it means for her son Luke who has dyspraxia. Christine strives to spread awareness about the condition to help people have a better understanding of Dyspraxia.

Christine starts by explaining her journey with Luke and the early days of getting a diagnosis. Concerned about her son constant dribbling, Christine took Luke to the doctor who initially dismissed it as the normal dribbling of a young child. However, Christine persisted and was finally referred with Luke to a paediatrician.  Luke was diagnosed with Oral Dyspraxia and later on diagnosed with General Dyspraxia.

Christine explains Dyspraxia in simple terms and talks about her son’s challenges with Dyspraxia. She explains how it impacts on his communication and coordination and how it affects his daily life, including being unable to play any sports or ride a bike. This has made it difficult for him to join activities with other children.

One result of Luke’s dyspraxia (in part because of his communication difficulties) is that he never made any real friends when he was younger and now has no desire to. However, as Christine argues, as long as he is happy and content in himself, she isn’t going to try and force him to make friends. Christine goes on to talk about the impact dyspraxia has on her son’s independence. His navigation and organisation skills are affected, which means he finds getting from one place to another difficult without help. He also has difficulty with daily tasks like using a knife and cutting things up.

We also discussed what the future might hold for Luke and Christine admitted she doesn’t know, although at this point in time she feels it will be very difficult for him to be completely independent. We discuss the impact of this on the family and, in particular, his older sister who he is very close to.

One area that Luke has got a head start on is purpose. He has already written a novella with plans for it to be published later in the year. As Christine says, the purpose he gets from his writing, has given him a real sense of identity and self-worth.

Dyspraxia is sometimes called a hidden disorder because it is often not as obvious. But the impacts are very obvious. However, Christine and Luke show that it possible to not only live with dyspraxia but find your own identity and be seen as an individual who just happens to have dyspraxia.

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Podcast Transcript
DEBRA: Welcome to episode 41 of the Journey Skills podcast. This week I’m talking to a fellow antipodean, Christine Draper. Christine is also an author and has a book called “My Friend Josh has a Dyspraxia” which she hopes that people would better understand what Dyspraxia is and also a better understand how it impacts on her son, Luke’s’ life. So that is why I would call one of my parent podcast where I share a parent’s journey. It’s also a bit of an educational Dyspraxia. And I’ll be honest; I didn’t know that much about Dyspraxia before I talked to Christine.

So we talked about the impact of Dyspraxia on her son’s life and when it will mean for him in terms of his future. Bit of a hard listening in some ways because one of the consequences of Dyspraxia for Luke is that he doesn’t have that many friends. Christine is very open about this when we talked about whether this is okay. And although I’m not personally convinced that not having friends okay, I think she’s right in a sense of saying that it’s about what’s right for the individual and she knows her son. It certainly got me thinking about whether I might be over-stressing when it comes to my own daughter’s friendships. Not sure the verdict on that one yet though.

We also touched on issues around what happens when we’re not around. I know I’m not the most hearing subject but I genuinely think the more we talk about it, the better. Just doing this podcast has made me think about the what-ifs. Not in a negative way. In fact, it’s often been the opposite and benefited my daughter. I often admit, I might just be that bit overprotective so forcing myself to step back has been good for me and for her. If you’re like me and don’t know an awful lot about Dyspraxia, then I think you’ll be much better educated at the end of this. And if you know anyone who has Dyspraxia then you’ll certainly have a much better understanding of the challenges that they’re facing.

DEBRA: Today on talking to Christine Draper who is a teacher and an author and she also has a son with Dyspraxia. Welcome, Christine.

CHRISTINE: Thank you very much.

DEBRA: You tell us a little bit about your story and background about your son?
CHRISTINE: I’m an Australian. I’ve been living in England for the last eleven years and I have two children, Ruth she’s 19 and Luke he’s 13. When he was 2, he’s still dribbled a lot so he dribbled continuously from when he was born to probably five-six and he used to wax. His bibs are all provided to protect his clothes and he just got through 3 clothes during the day. So when do the doctors and I commented that he said I was hitting him, I said “You don’t understand he dribbled every day since he was born”. So we got a referral to a pediatrician at the hospital and they don’t know to do with all Dyspraxia then with the aged of 2. We then moved country and when he was in nursery, he then was diagnosed probably about the age of 4 when he’s in reception with general Dyspraxia.

DEBRA: So what is Dyspraxia?

CHRISTINE: So Dyspraxia is characterized by motor coordination difficulties but it also has other issues that normally go along side Dyspraxia including organization and there are those other features as well.
DEBRA: How does that impact on his life having Dyspraxia?

CHRISTINE: Well, coordination was bit thing fishy when he was younger so we went to the nursery, even I couldn’t understand his speech. And so he ended up having no friends because he couldn’t communicate with his piece at all. So that was a big problem in the early years. Then when he went to year 1, would tip other parents telling us that every time they pass the school lunch time, he’s hitting on his own. So he became very, very used to being on his own, not having friends. So that now means that he got to the point where he just told us how things were and he got accustomed to it. So when we turn to school in year 3 and they try to put him with a buddy and he said, “Why do I want friends? I’ve never had friends.” So he went from the point of ‘wanting friends desperately need one or two’ to ‘I never had friends, it doesn’t matter anyway’. And so he still, the only friend he has in the world is his sister.

Coordination is a problem because of his coordination, his writing is awful. He does everything on the computer and also things that he can’t ride a bike. He can’t play sports because his coordination does have disability. He can’t do music, he can’t sing. So one thing he went doing when he was younger was play the guitar; he can’t do that because he doesn’t have the coordination to lift his fingers.

DEBRA: We talk about that friendship a bit. Is something that you’d like him to the have friends?

CHRISTINE: Unfortunately, I think because he’s now gone so long without him having friends and now he’s happy in himself without having friends. I’ve come to a realization that that’s not gonna happen. And I’ve come to an acceptance of that.

DEBRA: You mean an acceptance because you would prefer him to have a friendship or probably a small one or do you think that’s trying to push him to do something that he doesn’t actually wanna do?

CHRISTINE: I want him to be content with himself with friends or no friends. So if when he, himself is content is to have no friends, then why should I be putting my desires on him? Because that’s not what he wants. So I’ve come to the acceptance of that now.

DEBRA: Just on a wider point, do you think that something sometimes as parents we do then? That we sort of, you know, I can use my daughter as an example. Doesn’t have lot of friends and I was worried for her but should I be thinking “Well actually, maybe she’s not that caught, she’s not like me.”

CHRISTINE: I would think if she’s got a few friends and she’s happy with those few friends and that’s okay. If she’s only got a couple friends, she’s upset because she doesn’t have a wider circle and she, herself would like a wider cycle, well then that’s an issue.

DEBRA: In terms of his long term independence, how would Dyspraxia impact on that?

CHRISTINE: There’s a number of ways. He can’t cook at the moment because of course things like knife skills and chopping visuals, things like that would be a problem for him. So obviously, to living independently you need a better cook. He also has no navigation, he can’t find anywhere and so of course to live independently you need to be able to sometimes leave the house and go to shops or wherever you need to go.

His organization is severely affected, so being organized or things that one has to organize in an adult life would be very difficult for him. So he has a number of obstacles that are a problem for that. Now, how they will resolve this over for years as he gets older, I’m yet to say. So it’s really in some ways wait-and-see game to see how he develops over the next some few years.

DEBRA: What would he like to do in the future?

CHRISTINE: He likes to become an author. So he’s actually finishing his first novela, which were he get freshly edited because I said “If you want to become professional editor, I don’t want people to look back, find that book and him being bashed and out effects on him later on. So that book is actually going to hopefully be published this year. Hopefully he’ll be able to make a go of that and then he’ll have some kind of creation and sense of purpose and function in this world.

DEBRA: Is that important to you that he has that sense of purpose and doesn’t just sit around?

CHRISTINE: I like him to feel that he has worth and what he does has worth because I think that’s really important to his sense of identity and who he is and his sense of self- worth. And obviously, some people cannot do anything and still have a good sense of self-worth, but for him I think it’s really important for him to have something valuable that he feels he’s contributing to society.

DEBRA: We talk a lot on Journey Skills; really one of the focuses is independent living. Have you see him, let’s say when his 25, would he be living independently? Or do you think you’ll still be…do you want to be involved?

CHRISTINE: Oh, absolutely! I want to be involved. He’s already 16 now and I’m still involved. [Laughs] I don’t see him being completely independent but as I said how his views increase and how things work out over time is yet to be worked out but I’m quite happy with the concept that at 25, he may still be living under our roof and it doesn’t upset me at all.

DEBRA: In long term, when you’re not around?

CHRISTINE: That’s an interesting question. I have had that concern before and when I voiced that concern my daughter said “Well that’s easy. He’ll come and live with me.” and I said “No. I don’t want you at the age of 18 to feel responsible for the long term care of your brother.” and she was like “Why not?” So I know that something that will have to look at and look out in the future and I want to find a way of doing that where it doesn’t have to fall on his sister.

DEBRA: But they have a good relationship you said [Yes, I do], so why, and again I have the same issues about not wanting my daughters oversees to be responsible for a her but what other alternatives are there? Should we not expect siblings to get involved or at least feel a sense of responsibility?

CHRISTINE: I think she will always have sense of responsibility and she will always look out for him. But I think she needs to better work out her life’s direction and where she’s going and organised her life without the burden of ‘I’m gonna have full responsibility of my brother’. And maybe long-term that is what happens because as life unfolds that suits her and him and it works but I don’t want her to be working out her career and her life’s choices on what she’s gonna do with that in mind.

DEBRA: So you’re just taking that burden as far as all parents saying ‘Don’t feel that you have to do it’ even though I think we’re all hoping at the back of our mind that they will.

CHRISTINE: I’m hoping that she ends up with a life where she’s happy and fulfilled. The same with our hope that Luke is happy and fulfilled. And that she’s able to do what she wants to do with her life and have the freedom that she needs to do that. I don’t want her to be burdened by her brother in anyway.

DEBRA: So you said that they get along really well. Is that because he didn’t have friends or is that just their personalities?

CHRISTINE: I think there are a number of reasons. One, is the fact that she’s 5 years older and being 5 years older, she had an understanding that a younger sibling possibly couldn’t have had. Secondly, I worked hard at manifesting a relationship between them. So if there are issues, I wouldn’t just scream ‘You need to deal with it’. I would actually moderate between them and help them to work at that and discuss it. If he was doing something that was hard for her to understand, I would talk to her about it, I would explain it. There’s a lot of that, coupled with the fact that she does have a very caring heart. Now with this, because she has a brother like that or she would have it anyway is a question. I think she possibly would have it anyway. There is that luck if you like coincidence that she does have that very caring nature as well.

DEBRA: I mentioned when I introduced you that you’re an author. Tell me a little bit about that.

CHRISTINE: Yes, I have a number of books but I have one related to Dyspraxia called My Friend Josh has Dyspraxia. I wrote it for a number of reasons. Firstly on personal level, I wrote it so that Luke’s cousins could understand how he is and why he is like he is because even when they are much younger, in some things he’s probably in a lower level from there. They live outside the world so it’s not like they’ll just accept him as he is Luke. They don’t really know him very well. So that was one reason I wrote it.

Another reason is because it was a hole in the market. There wasn’t anything like it and when the problems with Dyspraxia are often referred to as a hidden disability. It’s not obvious that the children have it and yet it can affect children very profoundly. A lot of people don’t have an understanding of it either. A lot of people go “Oh, that’s Dyslexia, isn’t it?” A lot of children have both but in different conditions. Completely different conditions. So it was written so that children’s cousins or family members or friends or classmates can get an understanding of that. It’s written purposely as a picture book so that a teacher can read it to a class with someone’s been diagnosed with Dyspraxia. And instead of the condescension about being the student, suddenly you’re talking about Josh. And kids are clever they can relate it. And you can have a discussion, you can open up the aspects so students can start to see “Oh that’s why he is as he is, what he does as he does” and make it a little bit more understandable for kids because one thing I’ve come to understand with teaching for about 20 years is that children are very accepting if they understand the reason, but if they don’t have a reason then children can be quite harsh.

DEBRA: To be fair, I would be one of those people that wasn’t very clear what is Dyspraxia was. Do you think it gets misdiagnosed then?

CHRISTINE: I’m on some Facebook groups about Dyspraxia. And lot of parents has come going of just be too much opposes Dyspraxia and know nothing about it. So this was something that when people diagnosed sometimes they don’t know about it and a lot of people think it’s just about coordination and that’s all it’s about. A lot of people think “Oh, it may say that they can’t write very neatly” and then look at just mild coordination difficulties. Whereas there’s a whole range and that’s when the issues with a lot of these conditions whether it’s autism or Dyspraxia, whatever it is, is that they tend to have a very wide range in the child’s ability and how the condition is manifest in each particular child.

DEBRA: What are some of the strategies you use with him then that helped him cope with obviously what makes life a bit harder for him?

CHRISTINE: One thing is we have been very honest with him so the fact that he knows he has Dyspraxia and this is what structure is helped him to understand this is why I have these difficulties, this is why can’t do these things. And so this been able to maintain a sense of self-image that he won’t have managed without that because he has a reason.

Secondly he had speech therapy and occupational therapy from a very young age and they made a huge difference to his abilities in those areas.

Thirdly, over time I’ve learned to adapt, to accept some of his abilities where he is and so you kind of learn where to push and where not to push. And just sometimes this is simple things like he wears his own shoes, we don’t worry about the fact that he can’t tie shoelaces. Ruth was very useful in that because I asked her when she’s preparing for my tea when she was ten, “How would I go about teaching him do shoelaces?” and she looked at me and goes “Why would you? He’s never gonna be able to tie shoelaces.” And that was really liberating because I no longer felt bound to be out making door, I could just say, “Okay, not an issue.” So picking your issues as well and he uses computer for everything at school. He doesn’t hand write so that’s very useful.

DEBRA: Has technology been really helpful in that scene?

CHRISTINE: Absolutely! He loves the computer, he loves technology. School says it got easy for him as he got older because his most hated thing at school was coloring ink. He hated coloring ink because he doesn’t have the fun-related skills for it. Whereas when he’s got older and things like writing and maths and so on, he can do those things. So school has actually got easier for him as he got older.

DEBRA: Did you have to dictate anything at home? You said “Don’t worry, if you feel like crying and that’s fine”, is there other things when you thought “We’re not gonna fight this, we’re just gonna go with the flow”?

CHRISTINE: One thing was accepting clothing. One thing that’s very common in Dyspraxia is something calls Sensory Processing Disorder. He doesn’t like particular fabrics on him at all. So instead of trying to get him to wear jeans or whatever, just accept that they’re not comfortable to him and he can just wear tracksuit pants and a top without an issue. So just dealing the acceptance and not trying to push him to always be like you expect a child his age should be is actually quiet helpful.

DEBRA: You said there’s when you spoke to him to see then understand that sometimes he’s maybe gotta do things and he doesn’t necessarily want to do?

CHRISTINE: He is always having to do things he doesn’t particularly want to do. We tell him that his Dyspraxia is not an excuse not to do anything and he cannot use that as an excuse. So we may make modifications for him, so for instance even with his homework sometimes I would scribe for him, no he doesn’t get away with anything. He would setup the table and everything normal child would had to do.

DEBRA: Thank you very much Christine.

CHRISTINE: You’re welcome.

DEBRA: Key takeaways? Obviously for me I’m much better understanding of what Dyspraxia is and how it can impact on young people, short term and long term. Also everyone’s journey is very unique but in lots of ways, we’re all dealing with the same What-ifs. Thanks for listening!

My Friend Josh has Dyspraxia

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