Podcast Episode 15. The earlier you know what you’re dealing with the easier it is to seek out the right support and put in place the right plan, this is the opinion of Scarlett mother of Edith. She believes her daughter Edith will achieve a great deal because her daughter has an in born desire to be independent. Edith’s spirit is inspirational.
Scarlet and her husband swapped countries and swapped schools to give their daughter the best chance possible, and Edith has moved from a child who struggled in mainstream to a child that thrives in the appropriate school. The family were in Switzerland when Edith was diagnosed the intervention they got was early and very detailed and even today this is still impacting on her positive progress.
Scarlett talks about how she feels the meeting milestones model is actually detrimental. She also provides some practical tips on how she helped her daughter to be able to do tasks requiring gross and fine motor skills.
Going your child’s pace is essential as its helps build confidence and self-esteem leading to a greater desire for independence. Finally, Scarlett reminds us that as parents/carers we need to believe in ourselves and the great job we are doing.
[.30] – All about Scarlett, her daughter and family
[1.00] – The Swiss way
[2.00] – The benefits of an early diagnosis
[2.35] – Patience is the key and sometimes the system doesn’t help
[6.30] – Tips on modelling tasks that need gross and fine motor skills
[10.30] – Rising to the challenges with strength and spirit
[13.00] – The importance of self-esteem and going at your own pace
[15.00] – The quest for independence and building the skills needed
[17.00] – As a parent believe in yourself
DEBRA: This week we’re talking to Scarlett who has a daughter age 11 with additional needs and we’re going to hear her story. Welcome, Scarlett!
SCARLETT: Hi, nice to be here.
DEBRA: Can you tell us a little bit about yourself, your background, where you are now?
SCARLETT: Yes, well, we are a family that have moved around a lot and really when it started first the journey with Edith, we were quite lucky we were living in Geneva in Switzerland and it was clear at a very early age she wasn’t walking and she wasn’t talking like everybody else and they don’t mock around there. So, we’re really very lucky that she got diagnosed at the age of 3. And we started speech and language and OT at age 3 and I think for us that was fantastic to get that much information and understanding of what Edith needed at such an early age. So that that was where the journey started. But unfortunately, for a child such as Edith when you’re living in a European country where the language is French, that’s not gonna help. So, we had to make the decision to come back to the UK for school when she was 4.
DEBRA: So, the actual medical and support was better there?
SCARLETT: I think, yes, in as much as it was the most incredible way that they will diagnose, they weren’t try to bush that you might have an NHS here, getting the right kind of diagnosis. She was given an MRI scan and we had a neurologist specialist in Geneva seeing us as a family which was just amazing so the level of detail and knowing what was going on inside Edith’s brain and the area that was affected was just phenomenal.
DEBRA: Do you think that made a big difference to her progress, generally?
SCARLETT: I think every step of the way, the fact that we’ve had the informational knowing more about how we can help, the medical side of it has made such a difference, yes very much so.
DEBRA: So, you moved to the UK for obviously school reasons?
DEBRA: How’s that been different then for her obviously language doesn’t become a challenge then, what would you say are some of the challenges she’s had to face?
SCARLETT: I think as much as you get back into the system in the UK, the thing is you have to be incredibly patient because it doesn’t matter where the children are and what they’re really in academically, you can’t make it happen until they’re ready and that’s probably the biggest thing that I’ve learned with Edith is that she has been very behind all of her peers and in the way that this country is run and the system that is run, in terms of learning for children, is very narrow. And so, therefore, I would say any kind of additional needs in any form, you’re going to struggle.
DEBRA: Do you make milestones?
SCARLETT: Yes, I think in this country, I mean if you even strangely, if we could have stayed in Switzerland, although their language barrier was there, they don’t believe in putting children into formal education until they’re 7. And they learn to read and they learn to write much later because they believe children should have a freer a childhood and a chance to express themselves. And then that, I think it would have helped Edith enormously because she never was able to be put into a system that she could follow because you can’t rush them and strangely, where she’s coming, she’s now 11, the things that she can do now have happened just in her own time. She’s needed the space and the time to achieve those things and they have come that is it doesn’t work in a system where we have to achieve at a certain time.
DEBRA: What does she find most challenging still?
SCARLETT: I think probably the things that, and again I don’t think the system in this country has helped her because it has completely turned her off but if you put a book in front of Edith then you ask her to read or she even sees the print, she wants to run a mile. I’m not sure she finds that very, very challenging anyway. And I think the whole way that it’s being presented with her in her young life in school has put her off.
DEBRA: Being compared to her peers then?
SCARLETT: And very much compared to her peers. In the very early days at primary school, she would come out and pretend to be reading a chapter book and say, “I have a chapter book.” There’s no way that Edith could even read a chapter book which she knew what she wants to do and she was really aware of those around her but she just couldn’t do the same as everybody else. She was made to look to fail really and I think that’s something that’s not being great for her to have been given the space and the confidence to learn because she can read and she’s actually more capable of it than she believes.
DEBRA: So, it’s confidence then?
SCARLETT: It’s confidence. And I do think with children with additional needs, again, it’s the confidence because if they find something difficult, they’re not going to try too hard if they think they’re going to fail. So, it’s giving them the expectation that they can succeed.
DEBRA: So, do you do that with her?
SCARLETT: Yes. It’s still something that we do find a challenge but she’s come an awfully long way in that. I’d say her writing and that’s again because of that sort of thing she struggles with; holding the pencil and learning to write and the lines and everything else. All of those things were challenge but that has come so far and I would say the school has been instrumental in More House in giving her the confidence to do that. So, when you get a card every year, when you write a birthday card for probably the last 3 or 4 years, that has got better and better and better in terms of her wanting to do it and being able to do it.
DEBRA: So, are you suggesting build confidence but it’s going to come quite slowly?
DEBRA: In terms of her independence because I mean she’s 11 but she still I’m sure wants to do things, what kind of things is she pushing to do and how do you deal with that? How do you help her?
SCARLETT: Well, I think again with her, a lot of her needs is the fact that she has weak hands, so therefore, lots of day to day pop tasks in the house are really, really tricky for her but yet she really wants to achieve those and do them herself independently. So, the shower and hair-washing has been the most amazing experience for us in getting Edith to be independent. To open lids and to be able to squeeze the shampoo out and to be able to wash her hair independently in the shower which most kids can just do without even thinking about it.
And it’s encouraging her and it’s been me standing there and saying, “Right, you’re going to take the shampoo, go on and squeeze it now and put it on your head” and talking it through and doing that over and over and building her confidence and now she can do.
DEBRA: Do you have visual cues or is it just you being there with her?
SCARLETT: It has been visual and I’ve used a hand-held mirror to show her herself with the shampoo on her head, to show her how hard you need to work with your hands to make shampoo soapy in your hair because you can’t just wipe it which she just love to have done, that was the easy option and it makes it not such hard work for her but it showing her visually, yeah. I get a mirror and we’ve shown her how to get it nice and soapy and then to rinse it. We’ve done that over a period of time, maybe six months, and now she really understands how that feels to do that and she can do it herself.
DEBRA: So, she did independently able to do those sorts of things.
DEBRA: Are there other things that she’s still learning that you’re still teaching her?
SCARLETT: Yes. I mean, when you talk about the hair bubble and most girls can put that because she’s a girl and she’s got long hair, putting a hair bubble into her hair again has been a whole journey where she started on a doll in school and they use like a bobby head with long hair and they make the children learn put a hair bubble around that and that took Edith a long time to get that hair bubble around that doll and now she’s been able to transfer that skill into her own hair. And we’re nearly there with getting all that hair into the hair bubble which again is a huge achievement.
DEBRA: Has that build her confidence then for other tasks, do you think? When she does this one thing, she then feels more….
SCARLETT: Yes, I think so. I think as people just generally in life were very impatient and I’m a very impatient person and that’s the one thing that I’ve been told in having a child with additional needs such as Edith, you’re gonna have to have an awful lot of patience and things take time. But it doesn’t mean say they can’t achieve them and pushing her into achieving… It’s like riding a bicycle.
It’s probably the biggest one of over us because of that coordination imbalance. One of her biggest things is that she’s really wants to ride a bicycle for years and in the early days, I’d say when she was about 7 or 8 and children start to learn a bike, we got a three-wheeler, it’s a trike and it meant that she didn’t need to worry about falling off that because it’s steady itself and she rode it round and round and round to close for years. And then literally in the last year and a half, two years of her life, we mastered the bicycle and that was here locally where we live and the times Edith would try and steady herself on a bicycle and fall to the side and for fall of it and just be totally frustrated with being able to steady herself, weeks and weeks and weeks of going to the park and falling off and in the end, she mastered it.
DEBRA: So, was it just perseverance then?
SCARLETT: It’s just for her and for us, it was about perseverance but also to feel it. She had to physically feel how it feels to steady yourself and to ground yourself on a bicycle and to find those skills, put your feet down and everything else. And again, the things that children do so quickly from stabilizes to running a bike, it’s weeks. But it was months, maybe a year but we got there and it proves that you can achieve these things and she did. And I think that was the most incredible sense of achievement for her.
DEBRA: So, what would you say she’s really good at? What kind of things does she excel at that she really pushes herself hard because she wants to be independent of you?
SCARLETT: Well that is Edith and its entirety. She is a child that when she was diagnosed when she was 3 years old, Edith has an incredible spirit and a determination and I think that really as your sort of asking me questions about anything in life, I can only say that she’s the type of girl that will rise to every challenge and she’s just not gonna let it beat her.
So, I’m not sitting here and saying there’s really anything because I think she’ll be able to achieve most things in life in her own time but it’s her spirit. She’s got so much strength and the spirit to do these things and I think they said that very early on that will be her saving grace, really.
DEBRA: Where do you think that comes from, though, that spirit? Do you think that’s something you’re born with or do you get that from people around you, believing in you?
SCARLETT: I think for Edith; she was born with it. And she’s a very lucky girl that she was born with that and because she’s got a strength of character that means all the things that other children do so easily, thankfully she’s got that real pushing confidence in herself. Strangely where you talk about the actual things to learn to do that are tricky within herself as a person, I would say she has more confidence in the person than my teenage daughter who has no confidence. She doesn’t struggle to do anything physically or even academically but it’s the person.
It’s very strange, you sort of look out for your children, you want to educate them, you want to do all the things but at the end of the day, you can’t give them a real sense of self-worth and that is something that Edith has probably more than her sister worrying about what she looks like, how she comes across to other people, interacting socially. She’s got so much confidence in that respect while my teenage daughter has absolutely none.
DEBRA: That’s interesting because that would, as you say, will stand her in very good state because the world will sometimes not be a kind place for her.
DEBRA: Does she not ever talk about things that make her feel less confident or she very much just gets on with it?
SCARLETT: If she can’t do something, she will readily say I can’t do that. She’ll pretty much set but interestingly, since she has joined More House which is a good 3 years now, the change in Edith where she would say “I don’t like school” or “I can’t do this, I can’t do that” that has totally disappeared. So, that again, is why I really believe that it stands how a child feels and their self-esteem. So, I’d say that she’s really in a very good place where she can achieve and also, she’s just given the space. So, I don’t find to saying that very often in life anymore.
DEBRA: When you say given the space, you mean given the time in her own pace?
SCARLETT: Yes, very much so. In learning I suppose in terms of Maths and English, I think the school get it so right. They push where needed to but it’s done in a way that is encouraging and pushing them on and not being a negative where she feels that she can’t achieve. So, I can only say all and all since her change of school and everything, has been the best thing that ever really happened to her. She doesn’t really have a say that she can’t do things anymore. She’s even says to us because we talk about… I’d never have said this before, but we talk a lot about what you’re going to do when you grow up? and she’s determined be a policewoman. She’s got it into her head. She’s got aspirations and she’s thinking about that which before she would never have…
DEBRA: Is even a good career choice?
DEBRA: So, she’s 11 now, if I said to you where would you like her to be in 10 years’ time when she’s 21, what’s your vision? If you could dream, what would it be?
SCARLETT: I’m not really sure on that because I think in sense of both of my children, all I would ever want for them is for them to be happy. Life is a funny thing and we all can get very caught up in the rat race of what life is about and I think sometimes Edith brings us all back down to Earth and what is important and she’ll say and do things that are just so basic but just maybe all of us could take moments, take some time out and stop and think. I just want her to be healthy and to be happy and to be secure in the person that she is. Just to be true to herself.
DERA: Would you like her to live independently though, from you?
SCARLETT: I would and strangely I think Edith will want it and I suppose that makes it easy for me as a mom where people have maybe children who sort of sit about and they don’t have any sort of compunction to put the washing machine on, she’s got more of that, she loves putting my washing machine on and getting the washing out and cleaning a bathroom with her at the minute and she’s fascinated to learn it.
She’s got that kind of insight believing herself, she wants to do these things. I think that’s probably half the battle but in terms of living independently, if it can be structured in the right way and of course that may mean some sort of overview from us even if it’s that she lives down the road or she lives locally, I’m sure we’ll all stay close to each other, we’re a very close family. Yeah very much so, Edith will live an independently life from me. I really do believe that, yes. And I think now that she’s in More House, she’s got more chance of doing that then she ever would.
DEBRA: Because she’s developing the skills that she needs…
SCARLETT: That’s the biggest thing and you know that’s why we fought so hard to get Edith into the school that she’s at because they give those children the tools to try live an independent life. And if you’ve got that happening, learning to cross the road, going in to a shop, who’s safe to talk to, getting on a train even if it’s just to Oxted and buying some food in Morrisons and they do that now and she’ll do that year after year after year where she’s going to stand more chance of having an independent life than most children who don’t have that chance to go to a school as good as this.
DEBRA: So, it’s almost that intensive, repetitive behavior, isn’t it?
SCARLETT: I think so. It’s certainly worked with Edith and some children maybe not but that repetition is key and doing things over and over and making them seriously aware, they’ll get there in the end. She certainly has proved that.
DEBRA: Just to sum up, if you had to give parents in a similar situation to you some advice, what would it be? What kind of things have you learned do you think that actually That’s what I would tell another parent who’s starting out on their journey?
SCARLETT: Well I think the main thing, more than anything is that you just believe in yourself as a parent and what you have in your heart and in your gut that you know your child the best and I really think that. We are probably the most empowering you can go and see psychologists, we’ve done so many in our time in different ways that have picked and dissected Edith to bits but ultimately, at the end of the day, you’re the parent and you do know best.
And if you believe in something for your child, you should not see that through and don’t let anybody tell you otherwise. Stick to your guns and believe in yourself. Certainly, with my husband, you know, I’ve been very fortunate I have a very strong relationship with my husband and everything we fought for Edith and together, you can achieve it. We did. It’s not been an easy journey but we’ve certainly got there and I’d say that goes forward for the rest of our life.
DEBRA: Thank you so much for your time and sharing your story with us.
SCARLETT: I’ve thoroughly enjoyed it, thanks for having me.
DEBRA: Key takeaway this week? Well, patience. Just be patient and let them make their own way and you will eventually get there. That’s what’s Scarlett was really saying, take time and be patient. And also, I think to trust yourself. You’re the person that knows them best, you should trust what you think.
Tips on Cycling Skills
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