The Sunflower Conversations

Different is my normal

April 25, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
Different is my normal
Chapters
The Sunflower Conversations
Different is my normal
Apr 25, 2021
Hidden Disabilities Sunflower

Different is my normal 

Bailey is in a mainstream secondary school and has the following health conditions, dyspraxia, attention deficit disorder, dyscalculia and DAMP which means Deficits in Attention, Motor Control and Perception.
 
Parents, Steven and Aneeta, tell us how Bailey has exceeded the limitations of her diagnosis with support from them. Bailey’s experiences at school made her decide to use her artistic talent to raise awareness and acceptance of hidden disabilities. She has designed some clothing using impactful language related to how she feels.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Show Notes Transcript

Different is my normal 

Bailey is in a mainstream secondary school and has the following health conditions, dyspraxia, attention deficit disorder, dyscalculia and DAMP which means Deficits in Attention, Motor Control and Perception.
 
Parents, Steven and Aneeta, tell us how Bailey has exceeded the limitations of her diagnosis with support from them. Bailey’s experiences at school made her decide to use her artistic talent to raise awareness and acceptance of hidden disabilities. She has designed some clothing using impactful language related to how she feels.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Paul Shriever:

So today we're going to be talking to Steven and Aneeta and Bailey Marshall-Law. Welcome guys.

Aneeta:

Hello. 

Bailey Marshall-Law:

Hello.

Steven:

Hello.

Paul Shriever:

Bailey is a talented 15-year-old who has recently been raising awareness of hidden disabilities by creating T-shirt designs in a bid to stop bullying. Can we start off guys by just talking and telling us about Bailey's conditions? What are they?

Aneeta:

Okay, so Bailey the diagnosis are that she's dyspraxic. She has ADD, dyscalculia and DAMP, and we are just awaiting an assessment for autism, she's been assessed by the educational psychologist and as we suspected shows a number of autistic traits, and we're just waiting for an official diagnosis on that as well.

Paul Shriever:

I know a little bit about dyspraxia and correct me if I'm wrong please, you can obviously add to this, but it's to do with physical coordination and movement, how does that kind of manifest itself and impact Bailey on a daily basis?

Aneeta:

So she is very stiff all of the time. Her muscles, her hips, everything is very stiff. It controls her body in a way where, for example, in Bailey, it shows because it pulls your legs in and so forth as well. She's got very fine motor skills, haven't you Bailey? So holding a pencil writing and so forth, takes an enormous amount of pressure. So she now has a laptop at school. Her coordination, she will often make a joke about herself when she knocks into a wall or a door or a table, which she does regularly. She will be oh, people are going to think I'm drunk mum, because she just can't-

Steven:

Make her way.

Aneeta:

Navigate herself particularly well in and around furniture and so forth. And spatially, she's very unaware. So social distancing, as you can imagine, is incredibly tricky at the moment as well.

Paul Shriever:

When was that diagnosed? When did you start noticing things was perhaps a little bit different?

Aneeta:

Well, I noticed very, very early on. I would say around the age of 18 months or so. I think because we've got twins, you've got someone to compare against and I noticed that she was doing things, Bailey never crawled she just got up and walked, which was unbelievable and so forth. So, but actually the school, we highlighted it very early on in year one and two. And it wasn't until year three that they took us seriously and sort of agreed that they thought that there was some sort of diagnosis there to be had. So she was officially diagnosed in 2014.

Chantal:

How old were you then?

Aneeta:

She was seven.

Paul Shriever:

Did that help you as a family process things? Did it explain a lot?

Aneeta:

Not really, because actually we'd never heard of dyspraxia, if I'm entirely honest with you. I guess it explained some of the physical elements that she was struggling with, but because there was other stuff that was still undiagnosed. It didn't make complete sense. It gave us dare I say a label, which I don't like the idea of, but it gave us something. I think you struggled didn't you?

Steven:

Yeah, because there's so much, when you're growing up so much stigmatism attached to hidden disability. Maybe from a point of ignorance, people don't understand it.

Paul Shriever:

Absolutely.

Steven:

And to be a parent and to find out your child has been given a label and accepting that because you don't, as a parent, I never saw my child different to other children. That's just the way she was, that's coming from a place of love, if she decided to walk on her handstands everywhere. So, I bucked against the idea of them labeling her, I found that really hard to accept. But then it was apparently myself, I when we wanted to do homework the information wasn’t going in clearly Bailey. She wasn't processing the information that I was trying to teach her. So, I was getting quite frustrated from that point of view. So, having the diagnosis after a period of time, after I accepted the situation, it made the path a lot clearer and gave us better understanding I suppose for want of a better thing.

Paul Shriever:

One of the things that I've read is that four out of every five children evident with dyspraxia are boys and that actually it's seemed to be quite rare in ladies and girls.

Aneeta:

Yes.

Paul Shriever:

And that it's an underdiagnosed. Is that something you're aware of or?

Aneeta:

100% yeah, 100%. I've read a number of articles and so forth and it's really uncommon in girls. Girls are very good at disguising their traits, let me tell you. They are really good at looking at their peers and mimicking other people's behaviors, just to kind of fit in. So yeah, it's not as common in girls as it is in boys. I don't know, but with the dyspraxia goes dyscalculia, it's quite common on a lot of forums. And if there is a girl that has dyspraxia more than likely or the likelihood that she will have dyscalculia is so high in my findings.

Paul Shriever:

They tend to go together do they? Is that something that, yeah. Are there things to avoid? Are there little triggers that perhaps make things more uncomfortable for Bailey that you've learned over the years?

Steven:

With the exceptions of Bailey's conditions e don't want her to feel ostracized or dis-included in anything. So, Bailey gets treated exactly the same way as Joshua, her brother, gets treated. And we have the same level of expectation on her as well. The difference is that we know if we ask things of Bailey, what time is it? Well, you've got X, Y, and Z, give her X, Y and Z time. We know that that’s not necessarily going to be achieved, there's going to be issues. So rather than as a parent, you get frustrated and upset that your child hasn't done what you told him to do or asked him to do. That's where you make the allowances and you gain a better understanding of things.

Steven:

I suppose it's equivalent to saying to a fish run this race and the fish isn't built to run a race. That's the approach we have towards Bailey. And what we say to her with school is, because your conditions have wired you differently the education system is not yet up to a level where they can educate you how you need to be educated. Therefore, you do your best, what we need to see is grit and determination from you and so we try to give her as much confidence and self-worth that she can go and do that.

Chantal:

So, Bailey's in a mainstream school?

Steven:

She is.

Aneeta:

Yeah. I remember speaking to the pediatrics team and saying, okay dyscalculia, what did this mean? And they said, she's going to find she's not to swim, she's not going to be able to ride a bike. Well, they were in swimming lessons the following week and we got a bike and we got all the padding possible, found the biggest fields and Steve was running up and down it trying to get, to teach her to ride a bike.

Paul Shriever:

Brilliant.

Aneeta:

She can ride a bike, physically strength-wise she is a powerhouse, she's very strong, but her muscles don't allow her to ride a bike for as long as she would like to do, but she can ride a bike, not particularly well, but she can absolutely ride one. And she can swim. She's not an elegant swimmer at all, she's splashing around, I'll spot my daughter a mile away in the sea, but she's in that sea all day long swimming, backwards and forwards and so forth. So we tried to not have any limitations around that. There are certain things obviously, we don't let her go out on her own ever because she's vulnerable and she's not competent. And her anxiety would kick in massively, which will then bring on other episodes and so forth. I just wanted to sort of say, for us as a family we tried to have realistic limitations and tackle things that we think that she should be able to do.

Chantal:

That sounds fantastic because otherwise Bailey would never have had that experience of having fun in the water, you know if you'd taken your doctor's advice on that.

Aneeta:

Yeah.

Steven:

Yeah.

Chantal:

That's so much fun that she would have missed out on. So, I hear this from many parents, in that I know my child.

Aneeta:

Yeah, absolutely.

Paul Shriever:

You've got your brother in the background now. His name's Joshua. Isn't it?

Bailey Marshall-Law:

Yeah.

Paul Shriever:

Is he an older brother?

Bailey Marshall-Law:

He is my twin brother.

Paul Shriever:

He's your twin brother, amazing.

Aneeta:

You've gone and opened the can of worms now.

Chantal:

Who's slightly older?

Paul Shriever:

I love it.

Bailey Marshall-Law:

My brother is one minute older.

Paul Shriever:

One minute, okay. And that's quite a lot, right. I suppose it, does he say that he's older than you?

Bailey Marshall-Law:

All the time.

Paul Shriever:

All the time. Okay. And how does that work? Do you and your brother get on well, Bailey?

Bailey Marshall-Law:

Yes, but we argue constantly over little things.

Paul Shriever:

I can see him in the background. You all right Joshua?

Chantal:

Giving us a wave there.

Paul Shriever:

Yeah, nice to meet you guys. What I think is lovely is that you seem like you're a very tight little unit and its lovely to see.

Aneeta:

We're a team.

Steven:

Yeah.

Paul Shriever:

Yeah, that really already is very evident. I want to hear all about these T-shirts Bailey.

Chantal:

Yes, yeah, we would like to know what's the story?

Bailey Marshall-Law:

I've been bullied for having additional needs, like nearly all my life.

Paul Shriever:

I'm amazed at your designs and what you've done. And I think you're very talented. So, if you want to tell me about your designs on your shirts, I think they're amazing. Is that something you're into, are you into art?

Bailey Marshall-Law:

Yeah, I am into art. I like anything arty.

Paul Shriever:

Amazing. Is that something that you think you might do a bit more of as you get a bit older you think a bit more art?

Bailey Marshall-Law:

Yeah, I really like creating things and making things.

Chantal:

How did you go about designing them? Do you do it with a pencil and pen or how do you do it?

Bailey Marshall-Law:

I do it with a pencil and pen and I think of words that go well together and that come from my head and I put them together. And I do little designs first, small designs and then I work on the ones that fit what I want to do.

Chantal:

And how many designs have you got on your website?

Bailey Marshall-Law:

Five.

Chantal:

And is it for any age or for children or?

Bailey Marshall-Law:

Any age.

Chantal:

That's brilliant. You must feel very proud of what you've been able to achieve.

Bailey Marshall-Law:

Yes I am, I'm very proud.

Aneeta:

All of her slogans are around how she feels and just trying to break the boundaries. But, what she wanted to do, is she wanted to make a design that would appeal to not just children and actually not just people with hidden disabilities, but something that's trendy enough and attractive enough that will appeal to anybody.

Paul Shriever:

And what that does is it pushes awareness of people with hidden disabilities. That's only a good thing it's a positive thing. Can you tell me what your slogans are, Bailey? Do you know any of them?

Bailey Marshall-Law:

Different is my normal, blatant ability, drop the label, off the spectrum.

Chantal:

So, it's a really nice black hoodie, everyone. It's black with white lettering on the label and then it's got a really cool graphic, which looks like the letters drop are being dropped with force to the ground. And it's striking, but its super, super cool. 

 

Aneeta:

And then this was the first one, which is, different is my normal.

Paul Shriever:

I love that.

Chantal:

That's lovely, really n ice

Aneeta:

She always says well just because I'm different, everyone says I'm different, but that's my normal.

Steven:

That's where it came from.

Aneeta:

That's where it came from. That's exactly where it all came from.

Chantal:

What else have you got there?

Aneeta:

[Crosstalk 00:12:54] she was saying. I'm wearing the blatant ability, which is a play on words for hidden disability, blatant ability.

Chantal:

Very clever.

Paul Shriever:

Guys, how has this been received? Tell us about that. Where are you selling it and how many have you sold? Tell me.

Aneeta:

To be fair we didn't really expect it to take off as quickly or as well as it has in the first instance. Bailey has struggled massively her whole of her school career with not being accepted, being left out, being victimized, being bullied, just her whole school career. Every other child in the class invited to a party except for her, all the stuff that you've heard time and time again, I'm sure. And she reached a very low point at the tail end of last year, a very low point. And we just thought what can we do? Bailey is, and I'm not just saying this because she's my child, but she is the sweetest child that wants everybody included in everything. She's all about inclusion and making people happy and she'll give you her last chocolate button.

Chantal:

That is very kind.

Aneeta:

Incredibly. And she didn't want people to feel the way she feels all the time. She puts a big smile on her face and she walks into school every day and she just didn't want people to feel the way she did. So, we sort of had a chat about it. And we thought we have to turn, what did we say, we have to turn the negative into?

Bailey Marshall-Law:

The positive.

Aneeta:

Right, okay. And you wanted to raise awareness for?

Bailey Marshall-Law:

Hidden disabilities.

Aneeta:

Okay, so we thought, what can we do? She's not that confident in talking as you can see, but she's very creative. So, we had all the coloring pencils around the kitchen table on a Saturday morning and we said okay, let's do some design. And that was it.

Paul Shriever:

Yeah, amazing.

Aneeta:

And she said, I just don't want people to feel, I want to be accepted. And she used the word, can I tell them? She said, I don't want people to be made to feel like freaks and not normal because it feels horrible. I just want everyone included mum.

Chantal:

The fact that you've been able to turn what has been a really painful, hurtful experience to something positive. And again, like you said, thinking about other people and them not having to experience what you have had to experience.

Paul Shriever:

You know what Bailey you've got what matters. And this is something that as you get older you'll realize, but you've clearly got very loving parents and a family around you. If you've got that, you've got everything. And I think you're clearly very lucky to have people around you that are supporting you in that way, darling. So, you're going to be fine. I think what you're doing is amazing and you just keep on.

Aneeta:

What was wonderful and heartbreaking all at the same time was just the stories and the conversations that came off the back end of other parents. And, for Bailey because she read all the social media comments. We just put it on Facebook didn't we, and people were sharing and sharing it. She was amazed. She would read a name and she wouldn't even know the name of this person, but she'll say oh, so-and-so said they're really proud of me and thank you for what I'm doing. And they really just spurred her on. So we only came up with two originally, and then we released a further three logos and we thought right, okay, what can we do? How far can we go with it? So we contacted the Dyspraxia Foundation because that was our first diagnosis and said, can we raise money for you? And they said yes, you can. So we thought that's what we'll do.

Paul Shriever:

Amazing.

Chantal:

That's just brilliant. That's so good. And through it you've created a forum, a community then where people have been able to share their experiences with you and talk with like-minded people who are having the same journey.

Paul Shriever:

Experiences.

Steven:

One interesting thing that's come out of it is that on my Facebook page and talking to people that I know, there are quite a few thousand people on my Facebook, is they never mentioned that their child had hidden disabilities before.

Speaker 4:

Oh, wow.

Steven:

They come out here, well my child is dyspraxic or my child has got Asperger's. And it was never at the forefront of their Facebook page at all. And hearing their stories is like to a certain degree it's nice to know that you're not alone as a parent in these circumstances. And that there is something to fight for. And I think raising awareness of children, young adults with hidden disabilities, and we're not seeking tolerance, we're seeking acceptance of what it is. It's very much my thought that some forms of what they call hidden disabilities are just merely the next step in mental evolution. Especially more so when you start looking at things on the autistic spectrum and high-performing autism, where that goes. And I think that needs to be recognized and accepted by mainstream.

Steven:

And having a little SEN department in the school where they have a little hub, is not good enough, more needs to be done about this. So by Bailey doing these T-shirts and the hoodies and hopefully the caps that we're doing and we can raise awareness. We can bring these things to the forefront, through these podcasts and other interviews that we're doing, that we're speaking to and really trying, there's more than one type of person in this world. And just because people are different, it doesn't mean that they're below you or above you.

Aneeta:

And having the confidence, like Steve said, you know there are people, friends that he knows over the years and so forth, but never ever said, oh my child has got this, but the minute someone else says it. Okay, I can now talk about that. And it gives you a bit of an out and you share experiences and stories. And actually there are so many of us out there, that are hidden, not just the disability's hidden, but we hide because it's not socially acceptable, and that's not right.

Paul Shriever:

Do you think this experience has helped Bailey's confidence?

Aneeta:

Yes.

Steven:

Oh yeah.

Aneeta:

Yes, without a doubt. She is really proud of herself. She can be quite shy. I think if you were sitting here you'd see a very different Bailey. She's not great virtually, are you darling, you don't really enjoy telephone talking and stuff, but.

Chantal:

You should be really proud of yourself Bailey. Do you wear the Hidden Disability Sunflower?

Bailey Marshall-Law:

Yes, I do.

Aneeta:

We tend to wear it in airports or if we're going somewhere where there's a lot going on, we'll then wear them, won't we darling?

Steven:

Yeah.

Aneeta:

I'm not sure how, we're very aware of it because obviously we know about the charity and so forth, but I'm not sure how publicly aware people are.

Paul Shriever:

In terms of how its awareness has grown. It's really moved a lot and improved, but it's something that we're always striving to do, it's something that still needs to be pushed.

Chantal:

How it runs is that the business joins the Hidden Disabilities Sunflower, and then they undertake to train their staff and we provide some hidden disabilities training. So that's how it works. So, at the airport they've joined and what we ask is that if business joins that they buy the lanyards and they give them to the customers who need them for free. So, because like you mentioned, it can take a long time to get a diagnosis. So, there's no proof needs to be given. It's just that if somebody has a hidden disability and they feel that they would like to make themselves identifiable, then they can choose to wear it.

Chantal:

It's a personal choice. And as you've said with Bailey, you wear it in certain instances where you think it would be a benefit. So every week there are more companies joining the scheme, which is brilliant because, as you said, we want everyone everywhere to recognize if someone has a hidden disability, you just need to be kind, bit more understanding, bit more patient. It's not a big ask. It's very, very simple. One in five people in the UK has a disability. So everyone in your school will either know someone, even if it's you, or have a friend or have a family member or their neighbor who has a disability. It's not a small, tiny, little unique club. It's everywhere. Everyone will know someone. So, I think that you've started a brilliant campaign here to raise awareness of hidden disabilities.

Paul Shriever:

You've clearly got lots of energy. And can you just tell us what activities you're into?

Bailey Marshall-Law:

I am into cooking and baking. I love baking and cooking very much. And I love music. They're my favorite things to do. I mostly cook on my own, sometimes my mum or my dad is in the kitchen while I'm doing it. And, my favorite thing to cook are lasagnas or baking cakes. I love banana loaf.

Paul Shriever:

Amazing.

Chantal:

I love a good banana loaf too.

Aneeta:

She's a mean little baker actually. She got a food mixer and that was it, she's off.

Paul Shriever:

The COVID pandemic has been a massive thing hasn't it? How has that impacted everything?

Steven:

Very scary situation to be in for any family. I think we're quite lucky because we got a lot of tightness in our family and we have enough space that we can all go to different four corners of the house and go do separate activities. Then come together as and when we need to. So, having a bit of mental stability during the pandemic, I think is definitely key. And obviously trying to get out as and when you can to do a bit of exercise and get a bit of fresh air or just a change of scenery, stop you from going stir crazy. We've done it before and the priority for me and my family is to stay safe. We have adhere to the rules. We don't go out unnecessarily, we don't try to push the boundaries by meeting up with loads of different people, because it's not a case of being overly optimistic, but it's a case of taking a negative and turning it into a positive. For us, we've got to spend an extra year with our children that we wouldn't have had before. And just know them even more and help them out and give them more guidance about what they want to do more than any teacher ever could.

Paul Shriever:

Absolutely. It brings you tighter, doesn't it?

Steven:

Absolutely, yeah.

Chantal:

Okay, so if you could ask for one thing as a result of our conversation today, what would it be?

Steven:

If I could get one thing out of today's conversation, it would be acceptance of hidden disabilities.

Aneeta:

Inclusion, yeah.

Steven:

Inclusion Yeah, that's it.

Chantal:

Perfect.