Category Archives: Real life stories

Why we’re taking on the London Marathon for Scope

Vicky, Louise and Nina are running the London Marathon for Scope – “a charity close to our family’s heart”. In this blog, Vicky, her sister Mell and her nephew Moss, all talk about why raising money for Scope means so much to them, and why they are excited to take on this challenge! 

“My little sisters have decided to run the London marathon!”

They are raising money for Scope – a charity close to our family’s heart.

My eldest son, Moss, has cerebral palsy. Thanks to Scope’s support, and against the odds (prognosis was that he would never walk), he took his first unaided steps when he was almost four. To hold your child in your arms and be told that life would not be the same for him as it was for his peers was the hardest moment in my life. Scope gave us hope.

To be able to walk into school on his first day and be able to stand up in a bar and look at people in the eye when he was older – that was my goal. My son is now more independent than any other lad of his age I know. With the use of sticks he walked into his first day at school and he walks into bars on his feet often! To say I am proud of him wouldn’t even ‘cut the mustard’ (if that’s a real saying?)

This, I know was down to the support of Scope at the beginning of our journey. I am mega proud of my little sisters for doing this. I hope Scope’s support for parents continues as I honestly don’t know what we would have done without them.

“I’m so happy that my aunts are running for Scope”

Scope had a huge impact on my life. If it wasn’t for Scope and the encouragement from my mum I wouldn’t be able to walk unaided now. When I was a kid I was told I would be in a wheelchair for the rest of my life but that’s not the case and that’s down to Scope and my mum.

I’m so proud and happy  that my aunts, Vicky and Louise, are running for Scope. I didn’t realise they knew so much about how Scope helped me when I was growing up, so it’s great they are raising money for Scope. I work at Scope now so I really appreciate where the fundraising goes and how important it is.

I really hope to be there to support them on race day. My dissertation is due though so I don’t know if I can make it, but fingers crossed I can be!

Head and shoulders shot of Vicky and Louise smiling with a field in the background

“I’m really looking forward to marathon day”

I started running last February as I wanted to get fit after having my two children. I started the ‘Couch to 5k’ on my phone. This developed into entering 10k races and a half marathon with my younger sister Louise. Then we decided we wanted a challenge as I was turning 40 this year and we entered the London marathon.

Running for Scope was a natural choice for us because our nephew Moss has cerebral palsy. Without being supported by Scope we really believe he would possibly be in a wheelchair, rather than having the strength and determination to walk with his crutches. Scope also offered my older sister Mell the support she needed when Moss was growing. We met other families who benefited from Scope’s service too and have family friends who have also greatly appreciated the service Scope provides.

I’ve loved training for the marathon with my sister and our friend Nina has been a huge part of it too. It’s been challenging and tiring at times but we have all pulled each other along. When my legs are stiff and tired at the end of a run I think of my nephew and this makes me more determined and motivated to carry on and more proud of him. He is one totally amazing person.

I’m really looking forward to marathon day and running for Scope. Although I’m feeling a little overwhelmed about how many people are going to be there! We really feel that Scope are an amazing charity and we’ve all been working hard to fundraise so that they can continue the great work they do.

Want to help Vicky, Louise and Nina reach their goal? Make a donation on their fundraising page.

If you fancy taking on a challenge, sign up for 2018 or check out some of our other events!

“We have a feeling that our family’s future is bright”

Aslam and Sadia live in London with their four daughters. They struggled to get the support they needed for their daughter Kinza after she was diagnosed with cerebral palsy. She went through many health problems and it was a very stressful time for the family. Aslam and Sadia turned to Scope for support and it turned things around, making them feel less isolated and stronger as a family. In this film and blog, they talk about why support is essential for disabled children to get the best start in life.

As my daughter, Kinza, was growing, we saw that she was not developing like other children. When she was six months old, we took her to a specialist. They told us that some children have a tendency to develop later and to wait until she was 9 months old. We waited but she was still the same so the specialist referred her for some tests and we found out that she had cerebral palsy.

Dealing with the diagnosis

The diagnosis made us feel very depressed. Kinza was our first daughter and we had plans in our mind about what it would be like. We took her to many places and specialists to get their advice. What were the options? Is there anything we can do for her? So many questions. Nobody could make any guarantees. We just had to wait and see. My wife was worried and she still asks me sometimes “What is going to happen?”

As she was getting older, we were finding it difficult to handle. We asked for advice about what you can do for this type of condition. They all spoke about physical things, but no-one talked about her mental development.

As life went on, Kinza started having a lot of health problems. It was a very difficult time for us. We didn’t know what was going to happen next. So many things were going through our mind and we were really upset.

We got in touch with Scope because I was struggling

We were given a number for Scope and a few other organisations. We called everyone. We couldn’t find help from those organisations but we found help from Scope. It was a great experience. We discussed our problems and got some advice and we started to feel better. Before that, we were alone and nobody was helping.

Without Scope’s support, we don’t know what we would have done. We’d be struggling more and maybe getting worse. The emotional support that they have given us has been fantastic. We’re feeling much better compared to previous days and we have a lot more strength now.

Without Scope, we wouldn’t have achieved everything so far for Kinza, which is a lot. She’s in less pain now, she’s concentrating, she makes noises to communicate. She feels happy, she laughs.

A man and woman smile with their disabled daughter who is a wheelchair user

The future is looking bright

Hopefully, we will reach that point where Kinza will be totally independent. At this point, Kinza will be happy and we will be happy. After coming out of these difficult times, we have a feeling that our future, especially for our kids is bright, they will get good education and succeed in life.

The most important thing is that you never lose hope. If you have hope, then you can achieve everything. Don’t be isolated and try and find the support you need.

At Scope, we work to change society so that disabled people have the same opportunities as everyone else. There are 13 million disabled people in the UK today and life is still too hard for too many.

Our new strategy has been developed with disabled people and their families and sets out how we want to make this country a better place and drive positive, lasting change.

We’ll support parents of disabled children get the support they need, so that all children can succeed at school and get the education they want. We’ll work to make sure that disabled young people are supported as they move in to adult life, whatever they want to do.

Visit our website to find out more about our new strategy.

“Everyone deserves to live a life of dignity”

Ricky is currently studying for a Masters degree in the Theory and Practice of Human Rights. In this blog he describes his experience of living independently while at university.

I worried about the support I’d get at university

As I did my A levels, I was encouraged to go to university and I knew I wanted to carry on studying. I’ve always had a passion for politics and I wanted to take it further. My concerns were that I had never been in a mainstream environment. I had always been to specialised schools and colleges before that point.

I didn’t know what to expect and how other non-disabled people learnt as, obviously, being blind means that you can’t learn in the usual visual way of learning. I was also worried about the support I’d be able to get in relation to my care and social support. It was always there in school and college, I just didn’t know what was going to be there for me.

I could be left in my room for 24 hours at a time

Originally, I had agency support for my care. I stayed with them for about a year and a half, then I went onto direct payments. I applied and got the maximum disabled students allowance DSA so I’ve always had academic support, people to take notes, scan my books and reading materials etc.

I really enjoyed the academic side of things and the academic department did everything they could for me. I don’t think they ever had a blind student before. Socially, academic support at Sussex was a total disaster in terms of being left in my room for 24 hours at a time. It really took its toll on me. I felt really lonely and I didn’t really get the student experience at undergraduate level.

My current support is so much better

I’m now at the University of Essex and I’m studying for an MA in the Theory and Practice of Human Rights. I have to say, the support is a lot better at my new university. There are some hiccups but overall, it’s going pretty well. The student support department actually really care about the students and they’re really on the ball, properly qualified and their expertise levels are a lot higher. They know what they’re doing.

I’ve been so well accommodated and I’m really grateful to my local authority for giving me those opportunities to live life as any other university student should. I have choice.

More hours means more independence

I’ve just had my support doubled to 41.5 hours a week. It has made such a tremendous difference to me. Previously, I only had just about enough support just to live, to survive. I could only have a daily meal cooked and have a sandwich made up for the following day. It also meant that I could only get washing and shopping done, there wasn’t any time for social activities.

The increase in hours has meant I can do so much more. I now don’t have to rely on carers to do things for me out of their good will as a friend. I now have people coming in twice or sometimes even three times a day. I have a great team and they support me to do so many things.

Two men share a coffee in a cafe

Good social care is so important

Bad social care looks very bleak; staff not turning up, miscommunications, random staff turning up. There was one occasion where my mum had to drive down to Brighton because the agency had no one available and I would have been without food.

The alternative to agencies is direct payments. The only problem is that you have to advertise yourself for carers but once you establish a good network of people who can help you recruit it’s a really is a liberating experience to be able to employ people who have similar interests to you. When you’ve got a good team, it can work really well.

Having the right support is really good for my emotional wellbeing. As well as being able to survive, it allows me to socialise, take opportunities and explore avenues that are available to other people at university. It is so important to have good solid, reliable and enjoyable social care. Everyone deserves to live a life of dignity, autonomy and to be themselves no matter what.

At Scope, we work to change society so that disabled people have the same opportunities as everyone else. There are 13 million disabled people in the UK today and life is still too hard for too many.

Our new strategy has been developed with disabled people and their families and sets out how we want to make this country a better place and drive positive, lasting change.

We want all disabled people to be able to live the life they choose. That’s why we are focusing on making living independently a reality. From campaigning for better social care to providing information, advice and support, we’ll fight to make independence and choice a reality for many more disabled people.

Visit our website to find out more about our new strategy.

Working with disabled people: it’s so simple to get it right

Today we publish ‘Working for all?’, our new research about experiences of employment support among disabled people with high support needs. Aidan is 27 and works in London. In this blog he talks about his experiences of accessing support and colleagues’ attitudes at work.

Like many people, I get up at 6am each morning and commute to London to do a long day’s work at a job I love and an organisation I’m proud to be a part of. The only difference is that I’m blind, having been born with a genetic condition that affects my retinas. I’ve experienced a lot as a disabled employee: the amazing and the truly awful. I want to share what I’ve learned and explore where in-work support goes wrong and, most importantly, how we can get it right.

Not all employers think flexibly

I have had experiences in work where my disability has been viewed as a problem. The simplest adjustments have been refused, despite many adjustments not being expensive or requiring a lot of effort to implement. I once asked a line manager if I could structure my tasks in a way that would enable me to get the most out of my Access to Work support worker on the days she was in. This was met with the dismissive retort that it wasn’t “a part-time role.”

In another job, it was virtually impossible to get the managers to commit to the highly practical job descriptions that Access to Work require. I was refused simple requests such as using an alternative to PowerPoint or recording meetings. As a consequence, I’d often be working at home until 11pm to catch up and require far more support than would otherwise have been necessary. I was even told that because I had help with minuting, “you don’t look like a leader. You don’t look in control.” The message was always the same: I was presenting them with problems, and that is all they were. It was one way or no way.

I can’t hide my disability and wouldn’t want to, but I’ve developed tricks for subtle positive advocacy. At interviews, I always ask a question about the practical day-to-day work involved with the role. It allows me to slip in that I’m considering whether I’d need to use certain bits of equipment, or seek some support from the Access to Work scheme. I use a question to give them a crash course in case they were hung up on the disability. I believe that, right from the start, disabled employees should have a strong partnership with the employer. We are, after all, experts in our own disabilities. We need to support our managers, who in turn must take into account our needs in order to get the most out of us.

Employers’ mindsets need to change

In my experience, there are many people willing to challenge themselves and learn more about disabled colleagues. In my current organisation, for example, describing slides in meetings and running through proposed events in advance, have all become standard practice.

Colleagues understand that a disabled person is a person first and foremost. Combining their adaptability, my skill in offering solutions, good will and a sense of humour on both sides, we just make it work. Indeed, the fact that I require help sometimes has brought me into contact with colleagues in many different departments and roles. What might be thought of as a weakness is actually an asset for building strong networks, knowledge about other areas of the organisation and relationships that enable us to work better.

I want to see us get to a point where, instead of persuading employers to take a chance on disabled talent, they would say, “Why ever wouldn’t you?” I believe that with disabled people increasingly willing to express themselves and talk about their experiences, more and more employers are going through that game-changing mindset shift. That’s a great thing, but we’ve still got many more battles to fight before we win the war!

Find out more about experiences of employment support amongst disabled people with high support needs. Read our new research report, Working for all?

I’m just like any other mum – disability doesn’t change anything!

Marie and her husband Dan are the proud parents of Mark, who’s three years old. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. To mark Mother’s Day, Marie updates us on their past year –  Mark has been coming on in leaps and bounds, and there have been changes for Marie and Dan too.

Mark has my independent streak

Mark has stopped being a toddler and is most definitely now a fantastic, handsome and intelligent little boy. He has absorbed my fierce independent streak and most household tasks now echo with ‘No, Marky do it!’ in his own special little voice. His increased independence makes life easier physically – all the jobs I couldn’t do like picking him up are now in the past – but we have new challenges, how DO you discipline your toddler when he’s your own height? It’s a good job I can still shout and hold the purse strings!

One of his favourite things (at the moment!) is cooking, and this is where our fantastic adapted kitchen comes in; it means I can cook for the whole family and Mark can get involved too. He loves making gingerbread men! We designed the kitchen ourselves with a number of clever adaptations using standard materials to make it as cheap as possible – things like using wall units as low-level cupboards to give my chair room to fit underneath. It’s amazing how a few simple bits of lateral thinking make all the difference!

While the more sedate things are mummy jobs, the active things are daddy’s domain. Mark recently started swimming, something that he can do with Dan while I watch. I can swim (I’ve been known to flap about and propel myself up to 800 metres, although I won’t break any records!) but the idea of going in a bustling, busy public pool with Brittle Bones doesn’t sound too smart. I leave that one to the boys.

Marie and her 3 year old son Mark sat at table

Returning to work

And Mark definitely is a boy now, we registered him in our local preschool for 3 mornings a week starting back in January – the start of his funded time. He adores it! Whilst we’ve always had him out and about doing things (Start the Art, Mini Strikers, Rugby Tots to name but a few) since he was about 6 months old, he really has responded well to the structure of preschool. The loving and nurturing home we have created for him has worked, he’s ahead of his age targets across the board.

Mark now being at preschool has left a hole in my life, and I’m never one to sit still doing nothing. I’d get bored too fast. So, I decided to use my degree (First-class BSc in a number of subjects including Social Policy and Child Development) and my long experience in the health and social care field as both a recipient and worker to get a job where I can really make a difference. Such an opportunity arose and I’m proud to say I am now a college tutor, tutoring a wide range of courses. It’s brilliant! I get to bring a unique view to the table, helping students (e.g. care practitioners) see the wider issues at play beyond just learning the course. I hope they are learning a lot! Mark can also see me earning (as he puts it) ‘pennies for rides!’. I guess that returning to work as your child gets older is just another one of them milestones and I see myself as just like any other mum despite the 200+ broken bones, life-saving surgery as a teenager, the fact that I’m fully wheelchair dependent and have daily chronic aches and pains from years of physical trauma.

Dan has a new job too. Sadly he was made redundant following a very successful career in space research – he was one of the team who landed a spacecraft on a comet in late 2014. Google ‘Dan Andrews Rosetta’ if you want to read more! Sadly the end of the mission meant an end to the funding, and he lost his job. That was, naturally, a worrying time for us all. Not only was he job-hunting – he needed a company within a short commute distance to tie in with family, with normal office hours and that would recognise his transferable skills. He struck gold and is now working in the fascinating field of special missions aviation. Mark should have fun telling his school friends about what Daddy’s done for a living!

Marie holding a tray of gingerbread men while Mark sprinkles on flour

Remembering my own mum

So that’s it from us. A year of changes for us all and a lot of adventures! We like to think we’re giving Mark the best upbringing we possibly can. He’s always doing things and he most definitely doesn’t see me as anything other than ‘Mum’! It is still hard doing this without my own mum, there are countless times when I want to just call her and ask ‘What do I do if he…?’ or to share the latest milestone met. Readers who read my last blog will know that she passed away very suddenly in 2012 and this will be another emotional Mother’s Day for me. As well as all my other health conditions I am now also battling prolonged grief disorder but I am using my strength to ensure I am making each day count and living life to the full with my lovely little family. All I can say is that my upbringing from her definitely stuck, I wouldn’t be the fiercely independent working mum and wife that I am today without her teaching me that my disability needn’t stop anything!

Find out more about Marie and her family – read her previous blogs. If you have a story you’d like to share, get in touch with the stories team.

It took me 32 years to get a diagnosis. Why is autism in girls still overlooked?

Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, after two of her daughters were diagnosed. She found it a battle to get a diagnosis and started to notice a lack of understanding and resources when it came to autism and girls.

In this blog Carly shares her journey and talks about why we need to start recognising and supporting autistic women and girls. 

Growing up feeling different

My earliest memory is being the kid that couldn’t go to preschool without my mum staying. My mum actually got a job at the preschool so I would go! I remember it seeming very noisy and busy. All the kids were playing but I wasn’t. Then when I started school that didn’t change. I remember feeling very different then and things got even harder in secondary school. I was really anxious. I started realising that I never got invited to birthday parties. I couldn’t cope with bright lights and they actually made my quite hyper. My teachers just thought I was naughty.

My parents took me to see a psychologist at 14. He said I was just lazy and his advice to my parents – which is the worst advice you give an autistic person – was she needs everything new, she needs a fresh start. So we moved house and I started a new school but life just took a downward spiral for the worst. I got into all sorts of trouble, bad boyfriends. Obviously I had no understanding of how vulnerable and naive I was, no idea of the consequences of my actions at all. I ended up pregnant at 15 and living in a homeless hostel. I had my daughter who’s wonderful and I worked hard to turn things around, but there are serious consequences to not being diagnosed and not being supported.

carly-jones-blog-3-resized
Carly at the UN, where she spoke about autism and girls

“You can’t be on the autistic spectrum because autistic people can’t act”

I have three daughters and two of them are autistic as well, which is how I found out that I was. My 14-year-old was diagnosed when she was six and my youngest was diagnosed when she was just two. In the process of trying to find out anything I could about autism and girls for them, I realised “oh this explains everything!”

I went to see an NHS psychologist who gave me a tick sheet with things like “Do you prefer parties or museums?” – you know, one of those. I scored quite highly on it but then he asked “What are your hobbies?” and I said “I love acting” and he said “Oh then you can’t be on the autistic spectrum because autistic people can’t act”.

I left it for a while, then I wrote to the lady who discovered Asperger’s. I wanted to film it so that no-one else would have to go through this alone. Because I felt so alone. She invited me to meet her and I finally got my diagnosis – on film! There was a mixture of emotions but overall it was complete elation. I had my answers and I could start rebuilding my life, understanding who I am. I always felt like a second class ‘normal’ person and now I know that I’m a top class autistic, so I’m fine!

Why is autism in girls overlooked?

I was told in 2008 by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to “he” or “my son”. There was nothing for girls. I just thought why?

I think gender stereotypes are a big problem. Not only are there lots of women who are undiagnosed and unsupported, there are lots of men who present themselves in a more feminine way and they’re not diagnosed and supported either because they’re not the stereotypical view of what autism is – they’re not “train spotters” or like “Rain Man”. Also, female pain and female differences aren’t always taken as seriously. It’s always “Oh they’re probably hormonal”. Even my reaction to the sensory overload was seen as “Oh she’s in a bad mood” – and being autistic, I couldn’t explain my discomfort to them.

Then there’s what I call the ‘chameleon effect’ – masking your differences and trying to blend in. We do this just to survive in a scary, unpredictable world. Things are changing but there are still pockets in the UK where this is happening and girls aren’t being believed and supported.

Head and shoulders shot of carly in front of a brick wall

I want to make sure the girls in our country are protected and supported

Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.

Some things that happened in my life were awful but in hindsight I’m grateful now because I know how important it is to make sure that the girls in our country are protected and given proper support. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Being diagnosed gives you an understanding that this is how you see things and this is how other people see things differently to you. It gives you self-awareness. I’ve got a lot more confidence now. The hardest thing is knowing who you are after years of it being eroded away. I’m still discovering myself now but it’s quite exciting. I’m getting there!

Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you have a story you would like to share, get in touch with the stories team.

Why is it so hard to find books with a disabled character?

Dan White is the author of the brilliant The Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower.

For World Book Day, Dan tells us how he was inspired to create the comic book and why there needs to be more disabled characters in literature.

My book-devouring, art loving daughter, Emily, had stopped anticipating reading about disabled characters in her comics or literature.  For her, that day would never appear. Or would it?

It was the disparaging look I saw on her face when she first learnt to read that set me on a course of action.  Art, writing and comics are my second love, and that drove me to create the group of disabled superheroes that is The Department of Ability – a graphic novel with a difference, launching later this year!

Disability isn’t the main focus – they’re battling to save the world

I wanted to draw disability in a way that was not really about the disability. Yes, the five characters in he Department of Ability show physical differences, but there’s no backstory, no preface on disability and how it affects this motley crew, you just get 5 different SUPERHEROES battling to save the world in a final war between good and evil.

The Department of Ability are colourful, strong and fun! A ghost? Alien? A Dog? A Cheetah? Emily? How’s that for diverse!?

Several of the characters designed for Department of Ability comic strip
The characters from The Department of Ability comic strip

The Department of Ability has captured hearts worldwide even before the first volume is published. But it’s not just disabled hearts, it’s hearts from everywhere. From the warmth of Matthew Wright, to the voice of The Today Show USA, to the desk of comic genius Stan Lee, the belief and enthusiasm of established comic writer Leah Moore (daughter of Alan) and the tireless work of Scope, all who have seen and loved my creations see a future of change.

There’s a growing desire worldwide to see more diversity and essential inclusion. It’s a strong a message to those in charge of what we read and watch, telling them, “we love difference, and want to see more of it. We all have a right to be heard”.

Inclusion is vital, especially for children

Currently, this world seems to be run by people terrified of accepting disability into the media they enjoy but inclusion is vital, especially for children. They need and want to see images that reflect themselves, otherwise we’re going to have another generation growing up being seen solely as needy and marginalised.  Who wants that?

I read and review many books on disability but they are incredibly rare and it makes you wonder how much more could be achieved if the industry threw caution to the wind and realised the good they could attain by giving us everyday, non-static, non-stereotypical characters.

Inclusion means include, and that means all. It will dispel myths, preconceptions, and will inspire the reader to discuss disability in a whole new light, barriers will fall and disability will not be seen as the last to the party.

A young girl holding up her drawing of her superhero, a mermaid with a wheelchair

I hope The Department of Ability will kick open a door for more diverse stories

All the talents that blossom and bubble in this amazing community will finally be able to show itself to the wider world, it just needs a thinker outside the box to see there is no barrier, and to see the power and might of the untapped purple pound, all £249 disposable billions of it.

2017 is the year of Department of Ability BOOK One, and it will hopefully kick open a door for an army of stories, pictures and talent to emerge.  The authors are there, the future is there, let it in. The Department of Ability are loud, brash, dysfunctional, passionate and determined, a bit like everyone else on earth really.

For National Storytelling Week, we asked for better representation of disability in literature. Read about the activities we’ve done so far and please help us spread the message.

Visit the Department of Ability website to read the comic strips and keep up-to-date with the launch.

Dear Mum and Dad of a newly undiagnosed child

Around 6,000 children are born in the UK each year with a genetic condition that can’t be diagnosed because it is so rare. These are called syndromes without a name. A proud mum who is a member of the Swan UK community has written an open letter to other parents of undiagnosed children.

Dear Mum and Dad of a newly undiagnosed child,

This Rare Diseases Day, I want to tell you that you are not alone. We are here, in our thousands, living amongst the mostly unaware. You are now a part of the undiagnosed community. I am guessing that you feel lost, bewildered and don’t know where to turn. We too have been through the shock and disbelief. You now have a child known as a Swan – Syndromes Without a Name.

No-one knows what the future will hold.

I will never forget being told that 9 out of 10 children presenting my child’s array of challenges remain undiagnosed. It was confusing and incredible that in the world of modern medicine, undiagnosed was even a thing. I was in denial, googling frantically, unable to accept there was no answer. Yet, we are still here six years later. The living proof. I can honestly say that we have never reached the point of acceptance, we search hard for that elusive diagnosis.

Please believe me, our life is lots of fun. Every down turns into an up. Our child is an inspiration who continually reminds us what is truly important in life. It will become easier to live with, I promise.

There are many positives.

Without a label, no-one will set a limit for your child. They are free to reach any milestone without hindrance. No-one knows what the future will hold. Hold tight to the hope and don’t let anyone take it away. Many of us have experienced the joy of our child exceeding medical and developmental milestones and, believe me, it feels like magic.

Your child is unique. This will create an incredible bond between you, no-one will know your child like you do. Medical professionals will turn to you for an insight into your bundle of joy. Any siblings will be equally special and treasured in a way you can only describe. The love of a Swan unifies a family.

It won’t always be easy.

I should, however, warn you that you will plummet into the world of genetics. It will baffle you, it still does me. One tip, unless you are a scientist, don’t buy ‘Genetics for Dummies’ – I couldn’t get past the first few pages. Progress in genetics is nothing short of fascinating. There is a good chance in your lifetime that the ultra rare disease your child has will be identified. When that moment arrives, your reaction will be mixed – excitement, relief, not being sure if you want to know. The possibilities for future treatment and therapies and the opportunity to meet others with the same condition will hopefully follow.

I can guarantee that you will be welcomed with open arms into the Swan UK community. It’s a generous and caring group. We cry as one and laugh together – there is always someone who has had a similar experience. It’s a virtual listening ear sprinkled with a few regional get-togethers to meet up in person.

It won’t always be easy. There will be tough times ahead. It will take time to come to terms with the absence of answers but make sure you take time to enjoy your child. Focus on the positives and always remember, you are not alone. We are here in our thousands supporting each other.

Best wishes,

A proud mum

Visit SWAN UK’s website to find out more about the work they do.

You might not think it, but up to 30 million people may be affected by one of over 6000 rare diseases. Carole Villiers’ son Dexter is one of them. Read Carole’s blog where she shares the story of Dexter’s Angelman Syndrome diagnosis and how it changed her family’s life. 

Through The Eyes of Me – Writing a book for my autistic daughter

Jonathan Roberts has written a story book about his daughter, Kya, who was diagnosed with autism. After a great reaction to his book from Kya’s family and the professionals who work with her, Jon is hoping to publish it as a paperback.

Getting a diagnosis

We adopted Kya at 17 months old. We realised fairly soon that there were differences between Kya and other children of her age and we initially put this down to post adoption attachment issues. Kya’s Health Visitor raised her concerns and referred her for an assessment with regards to her development delays which resulted in a diagnosis of severe autism.

As Kya’s parents we’re blessed –  she is a lovely, placid happy child and I wanted to capture her lovely little quirks before we forgot them so I started to record them. I started writing things down and showed my wife Sarah. She liked them and we thought it might make a little book.

When Kya started mainstream school, the children in her class asked the teacher questions about her, like:

“Why is Kya allowed to run around?”

An illustrated page from Kya's book. The text reads: I am always on the move. I don't care for sitting still. I love running.

Kya has lot of energy and finds it difficult to sit still. It’s hard for us to keep up with her sometimes, particularly when we are out shopping and we forget her rucksack with reins. Luckily, we live near some long, sandy beaches and open spaces where Kya can run around in a relatively safe environment but we still have to keep our eye on her all the time! She doesn’t understand danger so she’s always climbing stairs, railings and on top of kitchen work tops. It can be very tiring!

“Why won’t Kya talk?”

She has difficulty concentrating and finds it hard to communicate. She has delays with her speech and often babbles but she is learning a few words now. When we read the book to her, she points and says, “Kya!” and looks at me for approval. She loves looking at the book but she has a tendency to rip things up, it is like her sign of approval, as if she is multiplying things as opposed to destroying them.

Picturing a book

And illustration of Kya and her Dad swinging her aroundI wanted to create a nice, pretty looking and simple to read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully.  We got in touch with Hannah Rounding, who was spot on with her pictures even though she had never met us!

We hope Through the Eyes of Me will help siblings, classmates and anyone who knows of someone on the autism spectrum.

In the meantime, you can get Through the Eyes of Me ebook!”

Through the Eyes of Me will be published by Graffeg in August.

Pre-order the paperback and add ‘Scope’ as coupon code to get a 20% discount on the normal price of £6.99.

Check out our Pinterest board of kids books for siblings of disabled children.

Joan Ross: A life remembered, 1939 – 2017

Joan Ross, a contributor to Scope’s Speaking for Ourselves project, died in January. Born with cerebral palsy in 1939 (when disabled children didn’t have to have an education), she went on to become  a language teacher, girl guide leader, advice officer for 17 years at Haringey Disabilities Consortium and a published author.

Using extracts from her interview in the British Library Sound Archive, we celebrate her life.

Going to schoolJoan as a child in a black and white photo

“My mother took it for granted that I was entitled to education like everyone else… She wanted me to be able to read so that I could read to myself and so on. She saved for me to go to a little private school very near where we lived, but they refused to have me so she tried the local infants school that was all on one level, and they were very reluctant. The headmistress did want to take me, she was willing to have me, but the education authority weren’t happy about me going and I didn’t have to go to school; it wasn’t compulsory.

So my mum decided to go to the education offices every day to ask them when they were going to find a place for me at this school she had in mind, and one day when she went she heard one of them say, ‘That Ross woman is here again’, and so she said, ‘Yes. And I’ll be here again tomorrow until you offer me a place for my daughter at school’.

So they did agree to place me in the school that she’d chosen, on condition that she came there and took me to the toilet twice a day, maybe more, fed me at lunch time; the teachers would teach me but nothing else, no personal care. But she was willing to do that and I was very happy there.”

Brownies and Guides

“We had a uniform which made me feel one of them. Our school icwbicc-24didn’t have a uniform so I enjoyed having an identity. I enjoyed the badge-work in Guides because that was way of proving myself.

“We didn’t really take a lot of exams and that at school, so this was a way of stretching myself and proving myself. The Guides, once they realised that I was just the same as them, except I was in a wheelchair, accepted me and I really felt one of them.

“After I left school. I was still in the Rangers, the senior part of the Guides, and one of the things the Rangers did was help with Cubs and Brownies, so I was delighted when I was asked if I would like to help with a Brownie pack, and I did that for about a year, or maybe longer. And then my own church Brownie pack was without a leader and I longed to offer to take over the pack but I didn’t want to do that because I didn’t want to be turned down. So I was delighted when I was approached to actually do that, and I did it for 15 years.

And it really compensated for not working because it gave me an important job to do which took a lot of time but was very worthwhile.”

Looking for work

“I kept on looking out for jobs. I went to a few interviews and some of them were better then others, but nothing very promising.

“There was nobody to advise me. I went to the job centre to see a disablement resettlement officer, but she really didn’t seem to have a clue how to help me. And so I just looked up jobs and I wrote to the Director of Social Services in Haringey and I did have an interview, which looked quite promising…

“They wanted to set up an advice and right centre for handicapped people in Islington in the day centre, which would deal with telephone enquiries on benefits and also lots of problems relating to disability.

“And I applied for that job and got it and it was an amazing experience.

“I wasn’t teaching but I was helping other disabled people and
carers and expanding my knowledge all the time. I went on training courses and the project was managed by the Citizens’ Advice
Bureau so we were able to go to their training courses as well.

“And the scheme lasted the year and… they hoped that they would get more funding for it to continue but when the year was up no funding materialised, at a time when the centre – it was called ARCH [Advice and Rights Centre for the Handicapped] by the way – and it was really making very good progress and helping a lot of people, and we just couldn’t abandon it because the project wasn’t being
funded. I had another worker – there were two workers on the scheme – the other person was disabled as well, he was called Melvin, and we decided to carry on working for ARCH voluntarily for another year.”

Joan’s commitment to her community then led to her being an advice officer for 17 years at Haringey Disabilities Consortium.

To hear Joan’s interview in full, go to the the Disability Voices website at the British Library Sound Archive.

Joan Ross and Lynda Bellingham
Joan Ross and Lynda Bellingham at the launch of Joan’s book

Read Joan’s autobiography, I Can’t Walk, But I Can Crawl.