Daisy Mason was the first wheelchair user to be featured on the BAFTA-nominated TV series The Secret Life of 5 Year Olds tonight.
The series that lifts the lid on the uncensored drama of life in the playground returned with more cameras than ever before.
Inside a brand new inner-city school, and with ever more ambitious and revealing games and tasks, The Secret Life of 5 Year Olds offered an intimate and fascinating window on the ups and downs – the tears, tantrums and triumphs – that unfold when children meet each other for the very first time.
In an exclusive Q&A, Daisy’s mother Lucy revealed what the TV process was like, and offered advice for other families living with cerebral palsy.
Have you had a chance to watch the episode yet?
“I have actually. I saw it yesterday. I had seen it a little while ago. I think it’s really good and sends a really important message.”
Was it as you expected?
“It was, yeah. I think it doesn’t show the other side of Daisy which we see most of the time. It doesn’t show just how outgoing she is and how chatty she is and how funny she is. It shows the very important things that sometimes get missed because sometimes in our world she is so sort of chatty and bubbly and lovely that I think people tend to forget how much of a struggle things are for Daisy, especially in the instance where she first meets people, and especially other children, I think it’s quite difficult for her to establish that she’s the same age as other children of a similar age and for them to not treat her like a baby.
“I think it’s a fantastic episode and really does show the struggles that she has and also highlighted to us the struggles that she has, because as I say, we just see her as fitting into every single situation that we throw her into, and her being the centre of attention loving life really. I think it’s been a real eye opener for us certainly.”
What did Daisy think of her experience on the show?
“She hasn’t seen the episode, but she absolutely loved being there. She loved the other children and cast and had a special place for Simon, I think out of everyone, snd Isobel who I don’t think features in the episode. She really likes her too. Daisy tends to draw more towards adults because they’re more useful I think to her than other children at the moment.”
What you see when she is with you might be slightly different to when you’re not. What was it like for you having a peep into a world that is normally unseen?
“It was completely different. The reason that we applied, solely, really was to see if other children and other adults treated her the same and just to find out where her place was within her peer group, and just to see if she was happy being on her own, and happy being with other children, and I think the episode highlighted that, certainly. She loved every minute. She didn’t want to come home. She found it difficult to leave me in the morning and she got upset because she sees me doing everything for her.
“She is very physically disabled. She can’t stand or crawl or walk, obviously, or roll over or anything like that by herself. Or feed herself particularly well. She relies on me for so much, so she did struggle leaving me. Once she got settled and started having fun chats she thoroughly enjoyed it and I think Ellie-Mae was her favourite child.
“I think she got Daisy quicker than the others. Some of the others still, even towards the end of the week, thought of Daisy as still being a baby because she’s so small and because she couldn’t walk. I think they found it difficult because they didn’t realise that they were the same age. I think Ellie-Mae did get that quicker!”
Another child said that she couldn’t play up the stairs because she couldn’t walk and wasn’t old enough.
“To watch that for me was a bit like, oh, she is! I wanted her to just say ‘I’m the same age as you’. She’s quite mature. She kind of can’t be bothered in a way, she’s like ‘Ah, whatever’. A few times throughout, I think you could see her saying ‘Yeah but, yeah but, yeah but, oh,’ and then just thinking ‘Do you know what, I’m not even going to bother. I think rather than getting really upset and getting cross and being angry, that is how she is.
“If someone takes her toy away from her, she’s like ‘ah’ but then moves onto the next thing. Nothing is that much of a big deal to her, and I think with some of the other children, getting upset over losing and over chocolate and things like that, I do think that for Daisy, the issues that she has to deal with and the things that she has to put up with are so huge for such a small person, that those trivial things really are just not that important.
“With the chocolate, she would just be thinking ‘My mum will have chocolate in her bag, I’ll have some of that later’. She would be more worried about who is going to take her to the toilet or if she’s going to get there in time as opposed to the things that some of the other children got upset about.”
What shocked you the most?
“I don’t think anything particularly shocked me other than the fact that she didn’t come across as lively or funny as she does normally.”
Do you think that was cut out so they could get their point across?
“No, I don’t think they did. I think it was because the other characters were quite strong, and it takes Daisy a little while to settle. I don’t think she was completely comfortable and settled with her environment, with her own little group who she was then going to be part of. I don’t think that the filming was long enough for her to get to that level. Daisy takes a long time to establish herself, for people to accept who she is and to realise actually that she is quite funny and can join in with the rest. I don’t think that’s detrimental to any of the other children or anybody on the programme.
“Actually, I think the programme was fantastic how they dealt with Daisy. If it had been longer, I do perhaps think we would have seen another side to her. Going back to the question, nothing shocked me. I was aware of all of the difficulties that Daisy had, but it did bring them back home to me, it did make me realise that she has got it really tough, and sometimes I’m probably too hard on her in that I expect her to behave like everybody else and be really good an polite and patient, and actually, she has to wait for everything all of the time.
“I think maybe for me, it did make me more aware of me perhaps being a little more patient with her, because she does have to wait for everything all of the time. Children aren’t good at waiting are they!”
Will she have new found fame at school?
“Yes, she has. She’s loving it. We were actually late for school for the first time this term this morning and we had to go through the office, not in through the class – only a couple of minutes late. We opened the door and there were a couple more children and she shouted ‘Miss, I’m on the telly tonight!’ Tonight we’ve got some close friends and family coming round, and we’ve said that she can stay up late to watch it and she is so excited.
“‘Can we have crisps, can we have chocolate,’ she’s absolutely loving it to be honest. It’s funny because I think possibly, a lot of the reasons for applying for something like that is for fame, a very short five seconds of fame for people. For us it was different. It was to see where Daisy’s place was, to make sure that she was happy without us and just to see her getting along. To see what really does go on, and if other children need educating, if their parents need educating a little bit more.
“I think that Channel 4 and the programme itself have done an absolutely amazing job in hitting that exactly. For Daisy and other children like her and families it will be like ‘Please treat our children the same, please realise they are the same, they just don’t walk, that’s the only difference’. For me that’s the only difference with Daisy. She doesn’t mobilise the same as everybody else. But she is the same. I think adults need training almost, to know and to realise that everybody needs to be treated the same. We don’t want our children to be treated specially, we don’t want them to have any more advantages.
“We just want them to have the same opportunities. I think the programme highlights that and I think the scientists at one point saw ‘She doesn’t need a mother figure, she needs a friend,’ and I think that is absolutely right. She has got a mother figure. That’s me. That’s my job. She just needs friends.
“Fortunately in her mainstream school, she does have that, but it did take a long time. They treated her very similarly to how some of the children do on the programme. Actually, she really can initiate play, and she does. It took probably six months for her to be completely accepted within her school as just being another child. I do think it takes time, but the children were fantastic really and it is lovely to see how they first saw her as someone disabled. It was quite lovely really.”
Daisy has been in mainstream schools for the past year. What differences have you noticed?
“She was in a mainstream nursery. We didn’t really know whether to send her to mainstream or to a more complex special needs school, but we decided that because she is quite bright, not overly, probably just below average place I would say, we thought we’d give her the opportunity to go to mainstream, and it was by far the best decision we have made so far for her. She is doing very well.
“She couldn’t read at all when she joined the school. She is now progressing through the levels at quite a fast rate. Faster than some of the children, and is reading at a higher level than them. She uses a specialised keyboard to write her work up on and she can manipulate the iPad second to none.
“She FaceTimes and sends emails and things like that. She uses Voicetech, so the little microphone and writes a message via talking, and also will type it so she can type messages to my family who have iPhones or iPads. She can communicate with them like that. She’s doing absolutely fantastically. We’ve noticed every week, a massive change in her. It was certainly the best decision for her.”
During the episode she revealed that she wants to be a secretary when she grows up. Does she still have aspirations for the same job?
“I don’t know where that came from actually because that’s the only time she has ever said that. I’m a secretary and so is her grandma so I think maybe it has come from there.
“For around the last two years she has been going to Spanish lessons out of school, so she does speak a little bit of Spanish. She always says that she wants to go to university and she wants to be a Spanish teacher.
“I was really surprised when she said a secretary, but who knows. Whatever she wants to do will be fine by us. Whatever she decides to do, we’ll find a way through, I’m sure.”
Has she got the chance to be a bridesmaid yet?
“Ah, not yet! She has been a bridesmaid before, but her auntie gets married next year so she has a little bit longer to wait still. She is very excited, we’re already looking at dresses.”
Is there anything else you’d like to add?
“Daisy, which I’m very proud of, is completely toilet trained. We were told not to bother with teaching her to use the toilet because with her level of cerebral palsy, it was highly unlikely to be dry day and night. We didn’t think she was going to speak either. We were gearing up for it to be much much worse for her than it is. And it is. At 18 months we started potty training her and it probably took about three years before she was dry day and night. She speaks because we played a phonic CD to her constantly every night from when she was old enough at about two.
“I just think it is so important that you don’t always listen to the information that you’re given by professionals. Nobody really knows what the potential of the child is. I think the more effort you put in and the more you make them work hard, the more of it you’ll get out.
“I don’t think Daisy would be as far forward already as she is if she didn’t have so many people around her that believe in her and really try. I just think that all parents of disabled children should do what they think is best for their children, alongside the help of professionals. Nobody knows kids like you do, and you obviously want the best for them in a different way to a health professional does. Daisy is a very special little girl and we’re all very proud of her.
“It’s such an important message. If I would have listened to a certain person at a hospital I wouldn’t have even tried. She would still be in nappies, definitely. Just because someone is disabled and uses a wheelchair, it doesn’t mean to say that they absolutely can’t do everything. She has held onto, or been strapped onto horse rides, she has been swimming and just passed her five metre certificate on her back without anybody holding her, just a float under her head.
“For somebody who can’t even roll over, they’re just massive achievements. I think she has done so well. My husband and I are really sporty and we were keen snowboarders before we had Daisy. We planned to take our children on the slopes as early as we could. Although she hasn’t been yet, we are looking at adaptive skis and stuff that we can strap her into somehow. As long as you’ve got the want to do stuff, you can do anything.”
On the Twitter reaction:
“If there are any negative comments, then everyone has a right to their own opinion. I know how special Daisy is and how proud we are and how proud she is of herself, so I don’t really care what anyone would say negatively, but it is always nice to hear the positives.”
The Secret Life of 5 Year Olds continues next Tuesday on Channel 4 at 8pm.