The Sunflower Conversations

It’s okay to be different

March 28, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
It’s okay to be different
Chapters
The Sunflower Conversations
It’s okay to be different
Mar 28, 2021
Hidden Disabilities Sunflower

Maria Cook is very candid about the multitude of hidden disabilities that her son, Ryan, has. They include autism, development delay, significant learning disabilities, sensory processing disorder, sensory modulation difficulties, hyperacusis and synesthesia. 

Maria is Ryan’s champion and voice as she has had to navigate the various diagnosis’ and adapt to the challenges of Ryan’s conditions. Nothing is insurmountable for this family and we get a real insight to what their life is like and what they have overcome together.

Show Notes Transcript

Maria Cook is very candid about the multitude of hidden disabilities that her son, Ryan, has. They include autism, development delay, significant learning disabilities, sensory processing disorder, sensory modulation difficulties, hyperacusis and synesthesia. 

Maria is Ryan’s champion and voice as she has had to navigate the various diagnosis’ and adapt to the challenges of Ryan’s conditions. Nothing is insurmountable for this family and we get a real insight to what their life is like and what they have overcome together.

Paul Shriever:

Hi guys, I'm Paul. And with me today is Ruth Rabet.

Ruth Rabet:

Hi, good afternoon, Paul.

Paul Shriever:

Today we are talking to Maria Cook, a Crawley Community Awards Local Hero, 2017. She's a County Mall Community Angel, 2017 and 2018. She's an autism ambassador for London Gatwick Airport, and governor for Manor Green Primary School. And today we're going to be talking to her about her son, Ryan. Let's start off with Ryan's conditions. Can you tell us what they are, please?

Maria Cook:

So, Ryan has a multitude of diagnoses. The main one is autism. And along with that they're called co-morbidities. So autism sits right on the very top. And then alongside that he has developmental delay, significant learning difficulties. A really horrible one that I refuse to really acknowledge is severe mental retardation. And I just find that so offensive. I hate it. But yeah. So although it's in black and white, we don't talk about that, because it's just horrible.

Paul Shriever:

Is that word still used? Is that something that is acceptable?

Maria Cook:

It shouldn't be.

Ruth Rabet:

No.

Maria Cook:

It absolutely shouldn't be. And seeing that in black and white was really quite shocking. But I know that it is still used. It is still used unfortunately, and it's not just in this country. I know that it is still used in European countries when you see the whole translation things going on. And it just makes me really, really sad and angry, because words like that should have been eradicated decades ago.

Paul Shriever:

Absolutely.

Maria Cook:

So they're not, yeah. So on top of the learning difficulty side of thing, and the autism, Ryan has a sensory processing disorder. And again, I don't like disorder, because it makes it sound like there's something wrong with him, and there's nothing wrong with him. So I tend to say sensory processing difficulties. And then alongside of that. So he really struggles with every aspect of his sensory processing. And when we were at school we were told there are five senses. Touch, taste, smell, all that sort of thing. But there's actually eight. And it's really, really interesting when you start doing some research on to all of those that we didn't really know existed. So then with all of that. We've got sensory modulation disorder. Again difficulties. They're so negative, isn't it? It's just awful. And so that is how he copes with his sense of feeling, where he is, where his body is in relation to the ground, or where he's sitting. And perhaps the feelings of hunger or thirst, which he doesn't experience.

 

So that's all within the sensory modulation difficulties. He's got what's called hyperacusis, which means he has really super, super sensitive hearing, likened to that of a dog, where he can hear things that we just can't hear ourselves. But then that obviously then brings along pain as well, because some noises are very, very painful for him, because they're too sensitive. He has a condition called synesthesia, which is really, really interesting, because we all know the colour red is synonymous with danger or stop. Green, it's synonymous with go and good. But for someone like Ryan that has synesthesia, they actually physically feel those feelings as those colours. And yeah, it's really hard to get your brain around. But talking to people that can communicate that have got synesthesia, they can say that something like the colour purple feels really prickly to them and makes them feel really itchy.

 

And so Ryan tends to be affected more by ... And affect, again, that's another negative term. Ryan really struggles with reds and blues that are emitted from the TV screen, iPad, devices, things like that. Because again, we can't hear these things, but every single color that, when we're watching a program on the TV, every single color is emitting a sound that is different to anything else. And for someone with synesthesia, they can actually hear the sounds as well. And obviously with the hyperacusis, so he's feeling all these different colours. And we found that the reds and blues were really painful for him on his eyes. And he would be covering his eyes because it was too much for him. But he was also so drawn to them as well because he could feel them that he wanted to still experience them as well in a way that he could regulate.

And we stumbled across that purely because there was a program on CBeebies called Wooly and Tig, and it was about the spider that was blue and red. And every time the spider come on the telly his anxieties went off the scale, his behaviors went off the scale.

Paul Shriever:

All these conditions, how were they diagnosed?

Maria Cook:

The autism is where it all started, because we knew very, very early on that Ryan wasn't hitting the milestones, hitting the targets, he wasn't developing as he should have done as a typically developing child would do. And at six months old, I knew that there was something different. He had his two year check about 10 days after his second birthday in November, back in 2010. And his developmental levels came in at that of a six month old, which was really hard, really hard to accept, because as a parent, you aspire your children to become, I don't know, brain surgeons or nuclear physicists or something like that. And then when that reality hits that actually this little person's going to need care for the rest of their lives, you do go through a kind of a grieving process.

 

And so along with the autism, within a month we were seeing a pediatrician and we got the diagnosis right away, which we were really lucky to do, but it was very glaringly obvious. But the system now is a hell of a lot different to what we experienced. But on that day, we had the developmental delay, we had the learning difficulties, and that R word that we don't talk about all in the same day. And then, as and when I then started to do ... because we left that pediatrician's office with nothing. It was like, "Okay, you got your diagnosis. Off you go." And we were left to it. And we just had a referral to a lovely local authority funded service called Portage, which then got in contact with us to look at any other difficulties that possibly were underlying. But other than that, we were just left to fend for ourselves. And thanks that Google existed, just about existed in those days. But then there's so much wrong information out on the internet as well, as we know.

Ruth Rabet:

Has that improved now, Maria? If it was today, have we progressed at all in supporting families like yourself?

Maria Cook:

It's a bit of a postcode lottery, to be perfectly honest. It really, really is. With one of my other hats on as chairperson of a support charity, we make sure that we have information packs that we send out to the child development centers, that we asked to be handed out, not even upon diagnosis, but upon that first referral appointment. But back in the day there wasn't anything. So we've been able to improve it on a local level, but even then sometimes it doesn't happen. And we'll get families come to us that have been through that system and still didn't know it existed. So yeah, it is quite a postcode lottery, unfortunately. And depending on who they see.

So lovely Portage could see that, they helped set us up with Learning Makaton to help with the communication.

Paul Shriever:

What's Makaton, Maria?

Maria Cook:

Makaton is a form of signing communication, and also symbols as well. So most people are very familiar with perhaps British sign language, which is for the hearing impaired. Makaton is a simplified version for the learning disabled. And if you've heard of Mr. Tumble, then that's Makaton. And yeah. So we've got a lot to be grateful for for Mr. Tumble, because he helped us to be able to communicate with Ryan. And Portage also brought into place the picture exchange communication system, which is just the acronym PECS. And that's basically just symbols for absolutely anything you can think of. Toy, food, vehicle, animal. So it's the symbol, the picture, and it's the written word as well.

 

And it's helping that child to learn to request. Say that Ryan wanted a biscuit, we would have a folder of all these symbols. And he has then learned, very, very quickly, that if he wanted a biscuit, he only had to ... because he couldn't speak. He's completely nonverbal at such a young age. If he gave me a picture of the biscuit, he was actually going to get a biscuit. So it was a very simple way of being able to communicate and ease the frustration, because he couldn't convey his needs. He was an angry, angry little person, that manifested in a lot of behaviors.

Paul Shriever:

Maria, did that manifest in like an episode or like a reaction, or did he have like kind of moments where he would get across and frustrated with the situation?

Maria Cook:

On every single day we would be having these awful moments of meltdowns because he just couldn't communicate. And it was just awful to see because there was such pain in his eyes, and I couldn't help him. And he started, even at three years old he was self-harming just to try and get out what he was wanting to say. He would be headbutting the walls or any hard surface. And it was just really awful.

Paul Shriever:

Could you see it coming, Maria? Could you see it coming? What would trigger it?

Maria Cook:

The lack of communication straight away.

Paul Shriever:

Frustration.

Maria Cook:

But then also it was the reds and blues on the TV, but we didn't know that at the time. It was not understanding what anything meant. The whole world was alien to him. It was the sensory processing side of things. The fact that the washing machine on a spin cycle made him so upset because he couldn't handle the noise of it, yet was so drawn to it because of the spinning of the drum, and wanted to watch it but couldn't bear to listen to it.

Paul Shriever:

It's also the understanding of that and how you need to understand it as a mum and as a parent, and that people around Ryan, understanding that. Because he wouldn't understand that at that age. It's like, "I don't get why I'm being this way or behaving in this way." How do you on Earth work that all out? And that's [crosstalk 00:12:07] challenging [crosstalk 00:12:07].

Maria Cook:

It is. Yeah, it's a real detective story, really, of just unpicking every single little behavior. Why? What's triggered? And a classic example was being in a supermarket, where there's so much white noise and bright lights, and the whirring of the refrigerators and the freezers. And to us, we just block it out. It doesn't mean anything to us. But for someone like Ryan, that's all he could focus on. And it just becomes so overwhelming. And again, it was just purely, you know  I take him shopping, and I've be happily, no problem in fruit and veg, and bits and pieces. Then as soon as I was going off into the refrigerated section where like the hams and the cheeses, and all sort of thing, you'd see the behavior spike. And all of a sudden it's like, "Ah, my goodness, it's because of these fridges." But then you then get the looks and the stares and the comments from people out there going, "Can you not shut him up?" The things I have had said to me out in the community would make your toes curl.

Paul Shriever:

How did that make you adapt and change? Because I'm sure that over the years you've had to shift the way that you are, because it's been a learning curve for you as much as for Ryan in understanding his conditions.

Maria Cook:

Yeah, absolutely. I mean, things like ear defenders have been a lifesaver, because whenever we knew we were going into a supermarket ... because again, it could be so easy to go, "Do you know what? I'm just going to do my shopping all online." Pre-COVID. It's a bit different now obviously, but pre-COVID people would say to me, "Well, just don't go out. Just do your shopping online." I'm like, "But that's just keeping us prisoners in our own home. I want to help support Ryan so he can still do everyday things. There has to be a way around this to help support him." So ear defenders, an example, was a phenomenal life change, because as soon as we knew it was like ear defenders on. Yeah, fine. No problem. Off we go. Ear defenders off and we're okay again.

 

Things like the adapted trolleys that I work very hard with, to start with with Sainsbury's a few years ago, that have now been rolled out nationally and across so many other supermarkets now. Because when he got too big to sit in the supermarket trolley, I'm like, "Okay. I can't put him in a buggy and push a trolley. He can't walk independently. He's going to go off and just completely trash an aisle." So I highlighted that there was a real difficulty, purely because people were laughing at me again. And I said, "This isn't acceptable, we've got to change it." And so we did, and now we've got brilliant trolleys.

Paul Shriever:

Did it get any easier with time? Did you learn triggers to avoid, for example? Like sounds, places, environments that you perhaps shouldn't go to that would upset Ryan? Is that something that you became better with?

Maria Cook:

Yeah. I think as, and again, it all stems back to the communication. Once you improve the communication. So there was lots of signing, there was lots of this picture exchange, small words started to then come. And he was then able to highlight easier to us what was really hurting him, or that he didn't like, or just made him feel very uncomfortable. And so that really, really did help. We learned very, very early on that ... there's me talking about the washing machine on a spin cycle. Yeah, he hated that, but I could still run the vacuum cleaner around at full power and it wouldn't bother him. Then when it comes to blowing up armbands to go swimming, or putting some cream on. It was those very short, sharp noises that would then really aggravate his hearing. So it was just going, "Right, okay. I've got to blow these. If we want to go swimming, he's got to wear armbands. Let's do it." So it was just adapting, really. And working together to know what works.

Paul Shriever:

As he's got older, Maria, has he been able to express himself? Can he express himself?

Maria Cook:

Oh yeah. Very, very much so. It is very obvious when Ryan doesn't like something, because the whole world knows it. And it is like pressing that button, it is like Hiroshima going off. If something's not going his way, that light switch that flickers, and it's instant. It's nought to 1000 in a couple of seconds.

Paul Shriever:

Can I ask, has it put a strain on you, on the family, on your relationships? Because I would imagine it could.

Maria Cook:

Yes. 

Ryan:

[crosstalk 00:17:02] circle!

Maria Cook:

[crosstalk 00:17:03] just chipping in here as well. I'm one of the statistics, unfortunately, because it's approximately one in three relationships break down when there's someone with autism involved. And I-

Ryan:

I am a square!

Maria Cook:

Are you a square? Okay my darling, I think you're more of a circle. And I split out with Ryan's biological father when Ryan was three, because it was just too much. It just took its toll, and something had to give, and that was it.

Ruth Rabet:

And Cookie's incredible with Ryan, isn't he?

Maria Cook:

He is. Those boys are just like the best mates ever. And people don't realize that Ryan isn't his biological son, because they get each other, they understand each other. They wind each other up just like any father and son do, to be perfectly honest. And then I'm the one that's got to sort it all out. Cookie's just a rock. He's a big kid himself, and he'll do anything, he'll do anything to help support Ryan. But that doesn't mean to say it's not easy. Two nights ago it took me, and here's another thing to do with sensory processing, toenail cutting. Oh my goodness. All right? Haircuts, things like that. We're lucky that Ryan bites his nails. I know we're not supposed to make that sound like it's a good thing, but it is, because that's one less thing that I don't have to worry about. He regulates that himself.

 

It took me an hour to try and do one toe nail two nights ago. And I never even got it done in the end. I had to give up because all three of us had gone past the point of no return, because it was too stressful. So we would do it in his sleep, tried that as well. Because he's so hypersensitive, he even feels that and it wakes him up.

Paul Shriever:

Maria, do you work?

Maria Cook:

Very hard, but everything's unpaid. I never went back to work after I had Ryan. I've worked all of my life up until that point. Had every intention of going back to work. But then it became very clear that Ryan needed such a high level of support that only I could give that to him. And again, that was a kind of another reason where the marriage broke down, because it was made very clear to me that no one else was going to help me. Everything has been a fight to make sure he's got everything that he's entitled to and everything is the right level of need for him. And so I just, I've never gone back to work, because I just never know if I'm going to get a phone call. I've always prided myself on being half an hour earlier than one second late, and never off sick, always doing the overtime. But with Ryan I'm never on time for anything. Even virtual meetings at home like this, I'm always late.

Paul Shriever:

But there's a reason for that. And it's clearly something that's profoundly affected your whole life. How do you see Ryan developing through his life? What will happen to Ryan? Is he going to be living on his own? Where do you see it going? Because there'll be a time when perhaps you can't support him. And have you thought about that?

Maria Cook:

Yeah, I think about it every single day. Every single day, because I'm not going to be here forever, am I? Cookie's not going to be here forever. Ryan is going to need some form of care for the rest of his life. He's not going to be able to live independently. And if there is supported living out there, you've got to make sure that it is appropriate. And at this moment in time locally, there isn't the right level of support out there for supported living. So yeah, as far as I'm concerned, he's here with us for as long as it takes really.

Paul Shriever:

Takes.

Maria Cook:

But we've had to take out a disabled person's trust, we've had to take out, to protect his inheritance as well, and to keep this roof over his head for him when Cookie and I are not here anymore. Obviously Liam and Sophie will be beneficiaries as well. And they can do whatever they like with it. It's up to them, it's theirs. But for Ryan, because he does require such a high level of care, the local authority would say, "Okay, so all the money that he's inherited, or the property, has to be used to fund his care." That's not right, because that's his, he should be able to buy as much Star Wars Lego as he wants with it, eat as much garlic bread as he wants with it. But he can't as it stands. But with a trust, a disabled person's trust, it goes into the trust with two trustees, and they protect it. And so they then have the power to use it for the Star Wars Lego.

               

And the government and the local authority can't touch it. They can't make the house be sold. They can't make them spend the money to fund his care.

Paul Shriever:

Of course. And it's something that clearly needs thought and consideration. Right?

Maria Cook:

Absolutely. And also, I'm ... where he has mind blindness, is another part of his condition. He thinks that he and I are the same person, and he really struggles with separation anxiety. Well, what's going to happen with that one day when I'm not here? And he's, "Where's mummy, mummy?" Because it will be. I'm going to be mummy for the rest of my life. It's not going to drop to mum. He's completely dependent on me. And it breaks me, and I shouldn't think about it, but you can't help it. I've always got this picture in the back of my mind with me up in the fluffy clouds looking down on Ryan, with him going, "Where's mum? Where's my mummy. When's mummy coming back?"

Ruth Rabet:

And Maria, in the six years I've known you and worked with you, I can't tell you or the people listening to this, the incredible work you have done and how you fight for him. But about the disabled trust, for example, there's lots of people out there that don't even know that they do that, that you fight for everything, and it's hard work. And I feel you're fighting uphill all the time. But there are so many people out there that wouldn't know to do that.

Maria Cook:

No. And this-

Paul Shriever:

Exactly.

Maria Cook:

Yeah.

Ruth Rabet:

You have to fight for everything. And it's because of you so many people have learned from you because of the hard work you put in and the fights that you have to put up with.

Paul Shriever:

Yeah.

Maria Cook:

Yeah. I've grown such a thick skin. And you've had to. Everything is a fight, up into tribunals to make sure he's got the right disability living allowance. Same with making sure he got his place in the right school setting as well was a hell of a fight. When he won that place I felt really guilty for a second. And I was like, "No, because I've been the polite nuisance on the phone every single day."

Paul Shriever:

You know what Maria? I think what strikes me is how lucky Ryan is to have you, because I think that there are probably a lot of people in the world or in society that don't have parents that perhaps are as aware or as driven as you. And there's a clear evidence there that you're very invested in Ryan's welfare, and can see that through what you're saying now and the-

Maria Cook:

Absolutely. Yeah. I mean, I'll do anything to get what Ryan deserves and is entitled to, but it's not just about Ryan, Paul. This is about every single Ryan out there, every single family that are going through it. And some, as you say, they just can't. We're all exhausted. And some people just have given up. They have given up because the systems are made too complicated that they just can't do it. And everything that I've ever done is finding the right person that cares enough to do it because it's the right thing to do, rather than because it's a tick box exercise and looks great on their CV. So yeah, I've kind of got a bit of a reputation now unfortunately.

Paul Shriever:

Yeah. No that's good.

Maria Cook:

Oh, Maria is involved. Oh okay. Righteo. Better listen then.

Paul Shriever:

I'm Ryan, as a young man, has plenty of energy. Can you tell me what activities he's into?

Maria Cook:

Well, if I was to say to you that Ryan is a cross between the Duracell Bunny and the Tasmanian Devil, that is no understatement. His brain never switches off. He is just on the go the whole time. And even in his sleep, he is chatting away all night long. And you think, "He must be awake," and he's not. He's absolutely gone to the world, but he just doesn't switch off. And we found that he just loved being out in the open. He loved bouncing, because he was getting a lot of sensory feedback from that. He loved it. So we focus a lot on that. And when he was about five we were offered the opportunity for him to start accessing horse riding through his specialist school, at a Riding for the Disabled Association stables. I was very nervous, very cautious there. "You really want me to trust you to put my child on a horse? What are you thinking?"

Paul Shriever:

Understandably.

Maria Cook:

Yeah. And they were like, "No. No, no, come on. Give it a go." I think we've seen how much he loves being on the trampoline at school. We've seen how much he loves being in the hydrotherapy pool at school. Let us give it a go. The reports that then came back going, "Oh my goodness, he absolutely loved it. He was so happy. He was singing away. He didn't want to get off the ponies." So I was just like, "Right, okay, I need to look into this so that we can do it as a family activity as well." And so that's what we started to do. And it's just become a regular event ever since. Still through school, but then also weekends, school holidays. And he has built up. It's a happy place for him. And they love him there. It's just a real safe place for us to go to where they get him. They accept him. They understand him. They go, "It's Ryan, it's fine."

 

This is a child who is scared of dogs, like beyond phobic level. He's terrified of dogs. He's quite into cats, and he'll stroke a rabbit and stuff because they just there, they don't do anything, do they? Whereas dogs are just like all over the place. But these huge animals, there's huge powerful animals, he can't get on them real enough. And then when he's on it, you just see any bit of anxiety that he may have had just completely leave his body.

Paul Shriever:

Does he have one particular pony, or does he have a number ponies or horses?

Maria Cook:

Yeah, well initially it was only ever one pony called Liquorice, and he still rides him to this day. But at some point he's going to be too big to ride him. But we realize where Ryan gets so fixated and doesn't like change, we're like, "Actually, Licorice isn't always going to be around." So we actually do unfortunately need to get him to ride other ponies so that it's okay to ride Beauty and Tice and the other ones that are available. So there's three ponies that he rides now. And he'll get on any of them.

Paul Shriever:

Amazing.

Ruth Rabet:

Maria, how is he with his music? Because I know he was a George Ezra massive fan. He'd sing the songs, wouldn't he, constantly, constantly. Does he still like George Ezra?

Maria Cook:

Do you know, I had to go and pick up a click and collect earlier, and George Ezra come on the radio, just complete and utter coincidence. And he's singing away. I was like, "Ryan, who is?" And he's like, "Ezra!" And he's singing away. And that's such another amazing phenomenon about Ryan is because, although he hasn't got the conversational language, he has got words, but you can't chat with him. I couldn't pick him up from school and say, "What did you do today, mate? What did you learn? What did you do?" He can't convey that. But hear a song on the radio, and he'll sing it word for word perfectly. Pitch perfect, in tune. And it's just like, "Wow." And he only needs to hear the first intro bars of a song and that's it, he's lost in that music. And he's got a phenomenal taste of music, he really, really has. And his back catalog of songs is incredible. And I just love everything about that, because again, that makes him so happy.

Paul Shriever:

Is World Autism Awareness Day, is it important to you?

Maria Cook:

I'm going to say yes and no, which I don't know whether you want to hear a yes and no answer to be honest. But yes, it's incredibly important. It absolutely is. Because there's not enough out there every single day to promote the condition. The World Autism Awareness Day has been around for many, many years, and when we first started on this journey, I look back from my social media memories, and all of the stuff that I'd be putting on there about it. And yeah, this is such an important day. You then realise, but every day should be autism awareness day. So it's great to get the conversations going out there. It's great to get the messages out there. It's great to take over social media, leading up to it on the day and then afterwards. It's great to celebrate, because that's what it should be, a celebration of some incredible people that are very, very misunderstood.

Paul Shriever:

Yeah. In terms of how autism is generally perceived, what needs to change in your opinion?

Maria Cook:

Wow. How long have we got left? Right? I would say that there are so many myths out there that need dispelling. Not everyone with autism is a math genius. It's something like 2% of people with autism have got what's called a savant about them, where they are so super, super intelligent. Number of times I've had people say to me, "Well, he doesn't look autistic." Well, what do you expect him to look like? Dustin Hoffman? This isn't about Rain Man. To stop the looks and the judging and the comments and assuming that it's a naughty child, assuming that I'm a bad mother. Just to have a bit more patience and tolerance and some understanding. And that's why every day has to be an autism acceptance day.

Paul Shriever:

Is there one major obstacle that you face all the time, daily, or is it just a combination of multiple things?

Maria Cook:

I think it is a combination. To name just one would be really, really hard. It's like what would Ryan's favorite song be? It changes on a daily basis. And it really does, because it all depends on what environment you're in at the time, what situation you're in at the time, but I think it really does come down to the prejudice that's out there, really, unfortunately. And it's a horrible word to say, but there is a lot of prejudice out there, because not enough information is perhaps out there. People are too quick to judge, because again, all of the difficulties that he has are all hidden disabilities. And so he appears to be a typically developing person, but it only takes that fridge in the supermarket for people to then see, actually, there are a lot of underlying difficulties going on.

Paul Shriever:

Absolutely.

Maria Cook:

And we're lucky we are familiar faces out in the community now. We are. But some families just are too frightened to go out. I'll never, obviously I can't at the moment, but once the restrictions are relaxed and we can access the community again, Ryan and I are going to be out there busting those boundaries again. Because he can't advocate for himself. But I want to have the conversations with people. In years gone by I've got angry and I've had a go at people, and I'm like, "Well, that's not actually helpful, is it? That's not going to solve the situation. I'd rather just have a conversation and educate them."

Paul Shriever:

I like the thing that you said about how that this is 24/7, 365 days of the year. This is constant. This is not just a one day awareness thing. This is something you're living with every day. And some awareness of that and understanding is so important.

Maria Cook:

There's no off switch, is there? There's no pause button. There's no volume control either, I can tell you that. So, yeah.

Ruth Rabet:

Maria, you were instrumental when the Sunflower was created at Gatwick five years ago. Now, can you believe that it's five years? What difference has that made to you, Ryan, Cookie, to your lives?

Maria Cook:

It has been, again, another life changer for us, because it's something so simple, but so effective. Yet it's not in your face either. There's not that big arrow pointing down, glaring, spotlighting you. But it's just a very subtle marker for people to go, "Ah, hold on a minute. Right. Let's see what we can do to help this family." And it really does make a difference. People do, again, pre-COVID obviously, people have actually come up to us in shops, and we've got the lanyard on, and said, "Okay, is there anything ... well, what can we do to help you today?" And I'll be like, "Right. I'm all right at the minute, but I know when I get to the checkout I'm going to need some help." And they be like, "It's fine. Just call one of us over and we can help you." That has been phenomenal. It's the recognition.

 

And also, when you see other people wearing it as well, there's that knowing look, and you get that nod you're like, "Yeah, I get you. I get it." So it has created quite a nice community feeling as well, because we all know. And again, I wouldn't know what condition they perhaps have, and they might not guess, work out what condition Ryan has, but it's that, "I get you. Good for you. Good for you for accessing the community, but just letting people know that you might need a little bit of extra help."

Paul Shriever:

Yeah. It's like an enabler. It just gives you a bit of comfort and confidence than perhaps you would have without it.

Maria Cook:

Yeah, absolutely. Yeah. I mean, I've got one hanging in the car all the time. I've got one in my handbag all the time. I wouldn't go anywhere without one, because it really does mean so much to us to know that it is so recognised far and wide now. And it does, it does give confidence and reassurance to families, and individuals as well, that people are going to help them.

Paul Shriever:

If there was one thing, as a result of this conversation today, what would it be that people take away with them?

Maria Cook:

That there's nothing wrong with Ryan. There's nothing wrong with someone with a hidden disability. Ryan is the most incredible person. He touches, every person he meets is touched by him. And he leaves a mark on them. He leaves an impression that they'll never forget. So there isn't anything wrong. He's just wired differently. It's like I'm sitting here talking to you through my iPad that runs on Safari. You might have your PC or your laptop that's running on Microsoft. They both do the same thing, but they're different, aren't they? That's what I want people to think of, that it's actually okay to be different. There isn't anything wrong with someone with autism. And actually they can change your life. If you give them the time, that's all we're asking for. Just give us some time and some patience and tolerance and let us show you how great they are.

Paul Shriever:

Thank you ever so much, Maria. And thanks for 

Maria Cook:

You're welcome.

Paul Shriever:

... all the words, and just wish you all the very best Rose. Ruth, is there anything you want to say?

Ruth Rabet:

No, just a huge thank you. She's an amazing lady.

Maria Cook:

Ryan, you're going to come and say goodbye? Come here. Come here. Are you going to get up or am I going to get up? I think I'm going to have to get up. Oh, here we go. Let's put you on loud speaker so you can say hello.

Ruth Rabet:

Hi Ryan. How are you? Are you good?

Maria Cook:

What do you say? you said, "I'm?"

Ryan:

Fine.

Maria Cook:

"I'm fine," he says.

Ruth Rabet:

Oh, well done. High five, Ryan. Do I get high five? Yay. Good boy. Had a proper high five from you for ages.