Tag Archives: disabled children

Dear Minister for Disabled Children and Families

Carly is an Autism advocate, consultant and professional speaker. She didn’t receive her Autism diagnosis until she was 32, after two of her daughters were diagnosed. She found it a battle to get the voices of Autistic women heard and in 2008 started to notice a lack of understanding and resources when it came to autism and girls.

In this letter Carly shares her thoughts on why she is supporting our Now is the Time campaign, and how a future Minister for Disabled Children and Families can help disabled children and their families get the best start in life.

Dear future Minister for Disabled Children and Families,

My name is Carly. I am an autism advocate, the mother of autistic daughters, and autistic myself.

Like many British disabled parents, we want our children to have a better tomorrow.

We have the passion and the drive. We won’t stop until all UK children have equity, including our disabled children. We don’t want anybody left behind.

Our task is lifelong. Our resilience is remarkable. Our need for support to help our children live a fulfilling life, is at times desperate.

Talent is everywhere, opportunity isn’t

As an advocate I have the privilege (and it is exactly that) to work for phenomenal British pioneers leading the way in disability equality. Most recently, participation with Right Honourable Lord Holmes on his vital independent review on disabled applicants and public appointments. Lord Holmes so wisely said that, “Talent is everywhere, opportunity isn’t.”

This lack of opportunity for our disabled children fails to recognise the gifts and talents disabled youth have, this lack of recognition could come at a great cost to our country in the long term.

Some of the brightest minds that can serve our country not only reside in well performing schools but also in Special Educational Needs and Disability (SEND) schools.

I have a friend, the acclaimed artist Rachel Gadsden, Rachel has a visual impairment yet in her talks she explains that “you do not need sight to have vision“.

The saying, “The quieter the mouth the louder the mind” means that as assistive technology becomes more sophisticated, the loudest thoughts, minds and perspectives will soon be heard louder than ever before.

Many are left isolated and forgotten

Please visit the family homes where home educated children live.  The children who were “not able enough” to flourish to their full potential in mainstream schools, yet not “disabled enough ” to warrant a SEND educational provision.

There you will find new thinkers, leaders and cyber security experts of tomorrow.  The most creative of artists, inventors and entrepreneurs, are waiting for you to notice them.  They are all missing out on the governments most diverse forward-thinking schemes like Cyber first, aimed to be advertised in schools.

This grey area of education leaves many of our most capable children isolated and forgotten.  They are left without opportunity or support outside their family.  This comes at a cost to our wallet, to our mental health, to our relationships, to our physical health and the NHS. And not to mention the cost to wider society of all that lost opportunity.

Carly writing on a poster at an event all about equality
Carly is an Autism advocate, consultant and professional speaker.

We aren’t asking for pity, we are asking to be heard

We must see disabled children’s abilities and not just their impairments.

We need a minister to work alongside parents, and the existing Minister for Disabled People and Minister for Children to ensure that no grey area is missed. We need you to be concentrating on disabled children alone so that no task is deemed too big, too small, too out of remit to be pursued as a policy priority.

Minister for Disabled Children and Families, we need you to ensure that when any new Disability Act, policy or project is discussed, you are there with a fine-tooth comb.  You need to ensure disabled children are a part of that policy .

At present some policies are too vague to be implemented. Some Acts have been written with adults in mind, and although this is of vital importance, it leaves disabled children behind.

Now is the time

What if parents of disabled children were better understood and work with a Minister as agents of change, respected by professionals and not viewed as “hysterical” or “hard work”? The truth is we aren’t either, we are often just exhausted.

How much talent could be discovered if we supported the most underestimated?

What if we celebrated disability history and the vital contributions disabled people have made to the UK?

What if we had someone like you making it happen? Now is the time to help disabled children and their families get the best start in life.

Yours faithfully

Carly Jones MBE

British Autism Advocate and Mum

Be a Disability Gamechanger and sign our petition calling for a new Minister for Disabled Children and Families.

Letter to Louis: a mum’s story of her son with CP

“I’ve never quite known how to explain what our daily life is like. I wanted to write how it is in order to give others a greater understanding of disability and caring. And to be totally honest, I wanted to write something that would make people consider being Louis’s friend. So here is me introducing you: Louis, this is your story. Readers, this is my son.”

Fighter

Alison White’s memoir of bringing up her son Louis covers the first 18 years of his life. It’s written to him, even though he doesn’t have the capacity to understand his mother’s writing.

From the beginning Alison White is brutally honest. When she first sees her son in the intensive care baby unit, she thinks, “I would not have chosen you.”

The name Louis means ‘fighter’, according to the baby names book Alison and her partner Greg used. It proves to be prophetic. His first Christmas present is to be able to come off oxygen and to bond with his mother for the first time.

The things people say

One of the things that I found most shocking about the book is the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child:

  • The woman from the parents group talking about how ‘perfect’ her own child is.
  • The nurse who calls Alison ‘Ermintrude’ when she brings her expressed milk to the intensive care baby unit.
  • “Look at him. That’s an apology, that is!” says another nurse.
  • From Louis’s own grandmother: “There’s something not quite right about him. He’s not like any baby I’ve come across before.”
  • The homeopath who attributes Louis’s cerebral palsy to his father not being present at the birth.
  • The shoe shop worker who says that it is not her company’s policy to sell shoes to people who cannot walk in them!

Celebrate every step

Scope used to have a child development tool called Celebrate Every Step. This was a way of marking the tiny developmental milestones that were missed by mainstream ways of assessing child development.

After so many battles, Alison begins to see the way forward:

“All those things that we take for granted like being able to walk, play, write, get dressed, wipe our bums, brush our teeth, tie our shoelaces, chew our food, blow our nose, lick our lips. You still can’t do any of these things. We help you to do everything and little by little, at a pace that is imperceptible, we make progress with some things. Other things will never come. The damage is done.”

Alison finds a music therapist from Nordoff Robbins who unlocks Louis’s love of music. Louis can sing his own name before he can say it. As Louis begins to express himself, his personality and his obsessions come to the fore. He likes to carry maps with him wherever he goes. His bedtime routine consists of his mother having to pretend to go for a bike ride before he can settle.

Presents of life

Louis’s birthday wishes become more and more eccentric: for his 10th birthday he asked for a Henry Hoover; for his next he wants an escalator! One Christmas he asked for a Soundbeam, an inclusive musical technology system used in sensory rooms which costs thousands of pounds. When his mother tries to explain that this is impossible, his response, which could almost be the motto of this book, is: “You could try.” Alison does try. She contacts Soundbeam who offer to lend a system over the Christmas holiday so Louis does get his wish: he gets a Soundbeam for Christmas!

18 plus?

For his 18th birthday, Louis and his mum get an unwanted present: no more respite.

“As you turn at 18, as we were told, are respite has been cut to nothing, gone. Yesterday you were a child and today you are an adult and everything will change with social services again but nothing has changed with you. You still need all of your care, but nobody seems to be able to tell us anything. We are not going to worry. We are having a party and your parties are known as the best.”

Letter to Louis by Alison White is published by Faber on 2 February 2018.

Win a copy of the book!

We have 10 copies to give away. To be in the draw,  post the things people say to parents of disabled children on our online community. 

Terms and conditions

Only one entry per person will be counted. The prize draw closes on 10 February 2018 at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter.

“They told me Evie may never sleep”

Meet Sarah, whose daughter, Evie, suffered from severe sleep issues for the first six years of her life. The lack of sleep affected every aspect of Evie’s life, including her health and her ability to get on at school. 

Have you ever gone without sleep? If you have, maybe you’ll understand when I say I don’t know how we survived. My six year old daughter, Evie, slept for as little as two hours a night, and it affected my whole family.

Living a nightmare

It was a nightmare – that’s the best way I can describe it. Except a nightmare ends when you wake up. This didn’t. There was no escape.

We felt terrible through the day and the night. As many as 80 percent of disabled children have sleep problems, and Evie, who has autism and hydrocephalus, was severely affected. Any loud noises frightened her. Bright lights hurt her eyes. She was very tearful, and emotional. She was often ill. She began to hate school because she struggled to make friends and spent a lot of time alone.

I knew how she felt, because I was tired, drained and often ill myself. I felt isolated too. I felt like no one understood. When I asked for help, I got nowhere. I was told that disabled people just don’t sleep, and that we just need to learn to live with it. But we couldn’t.

Finding a solution

I find it unbearable knowing that there are disabled children and families still trapped in that nightmare, thinking that there’s no way out. Because there is – there’s Scope.

I can’t tell you what it felt like to finally find help. Scope understands how severe sleep problems are, and how profoundly they affect a disabled child and their family. Most important of all, they have solutions – tried and tested techniques that can be used to get a disabled child to sleep. Their Sleep Solutions service runs training workshops and clinics for parents like me.

The training came at just the right time – I was at a really low point and was losing hope that things would ever get better.

Techniques that work

With Scope’s help, I looked at everything we did again – from what time Evie and her little brother, Isaac, got into their pyjamas to what we did before bedtime. I learned that even though watching television seemed to calm them down, the light from the screen tells their brains to stay awake.

The training even taught me what kind of food we should eat to induce melatonin – the hormone that makes us go to sleep.

We put together a new routine for bedtime, and I stuck to it even though the first ten nights were exhausting. There were times when I felt like giving up again, but Scope was there for me.

Now our nightmare is over

As the weeks went by, Evie woke up fewer and fewer times during the night. Her behaviour during the day improved too – she became much calmer. Isaac asked me if I had a magic wand that had made Evie nicer. But it was sleep – just sleep.

Except it isn’t ‘just’ sleep. You only realise how important it is when you don’t have it.

Thank you for your support

Your donations help Scope run this vital service which made such a difference to my family.

Sleep is so important to a child’s development. It helps them grow, learn and become more independent – it’s a key part of ensuring disabled children get the best start in life. And that means it’s vital to Scope’s work to make sure disabled people have the same opportunities as everyone else.

I’ve seen the difference Sleep Solutions has made to Evie. She’s now doing well at school. She’s gone up five reading levels in six months and it means so much to me to see she has two new friends. She doesn’t just sit in a corner with ear defenders on any more. She can finally play, like any child should have the opportunity to.

Now I work for Scope Sleep Solutions myself and help other families who have gone years without support. Thank you for making my work possible.

We plan to expand Sleep Solutions so Sarah and the team can provide vital support to more families. Sign up to enter the Spring Jackpot Draw today and you will be helping to make sure disabled children get the best start in 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’s book has just been published by Graffeg.

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.

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.

This Dad turned his disabled daughter into a comic book hero

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

In this blog Dan tells us how his daughter Emily was disappointed to find that she there weren’t any superheros that looked like her – so he decided to make his own!

“Born to be different. Born to save the world”

My name is Dan and I am an artist with a beautiful, talented daughter called Emily, who I adore. We are both proud to be part of an incredible community of people.

Emily was born with Spina Bifida and Hydrocephalus. This is a condition where the spine does not develop properly, leaving gaps in the spinal cord. When she was younger she was a very impressive bum-shuffler! But around five years ago, we bought Emily her first wheelchair. She loves exploring the world around her, and in her new wheelchair she could introduce herself to all sorts of new exciting things.

Like so many other incredible kids, Emily is blessed with endless amount of curiosity. She is a complete book-worm and absolutely loves learning through books, comics, films and music.

“Something had to change”

Unfortunately, this wonderful curiosity often gave way to frustration, annoyance and bewilderment. Emily always wanted to find characters, icons and images that she could relate to. However, very few made her feel accepted and included. Speaking to other kids, it became clear that they often felt the same.

Soon it became obvious to me that something had to change. I started gnawing on my pencil and, very soon, the ideas started flowing.

Just like Emily I love comics, and I have always enjoyed drawing. Before long I had sharpened my pencil and started developing a new comic that all children would enjoy. I soon realised that it had be about what all children aspire to be: Superheroes!

It is easy to underestimate children. But they are so much more imaginative, accepting and inclusive than adults. This is why I designed my comic for all kids. Because they will be responsible for a future in which people are not discriminated against or side-lined.

Meet the superheroes

With Emily’s help I created a whole world of diverse, unique and accessible heroes. All our heroes are dynamic team-players who use their impairment as their greatest superpower. After a lot of deliberation, we decided to call the comic The Department of Ability.

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

Among the first people to see the images were the charities on Facebook. Strongbones, a  relatively young charity, was the first to respond with real enthusiasm, and gave me the support and backing I needed. They are still very involved with the growth and global adventures of the Department of Ability.

Taking over the world

As soon as we started we had big hopes in the comic/cartoon world. It wasn’t long before our superheroes were taking social media by storm, with just a quick click and a paste on my PC.

Soon after designing the characters I gave up my day-job to become a full-time artist so that the Department of Ability could keep growing. The characters became more and more popular, from Australia, through India, to America. It is clear that Emily’s vision and insight have struck a chord with people all over the world.

It’s a Marvel!

At this point we knew everyone loved the characters, but we still had to design and produce the comic. I knew this would be a 24-hour job, but with the help of a literary agent (a real life wonder woman), it started taking shape.

She even showed the drawings to Stan Lee of Marvel, one of the most influential, brilliant and creative figures in the whole industry. He loved the idea, and now we are looking to work with him. I couldn’t believe it. It is one of my childhood fantasies realized.

The disabled community is a hub of amazing talent, from artists to dancers, to film makers to musicians. It is time they were all able to share and showcase their brilliance.

To infinity and beyond

Right now it couldn’t be a more exciting time for the comic. Strongbones threw an enormous party for us at Hamleys in June and The Guardian broke the news of Stan’s possible involvement. Since then Emily and I have appeared on The Saturday Show, CBBC Newsround, ITV Lunchtime News, and BBC Radio. There has even been some film interest from overseas and discussions with Merlin entertainment. I might even be working with one of the world’s leading comic book writers to finish the first adventure.

I could never have imagined our idea and vision would appeal to so many people. But it seems attitudes and prejudices are finally changing. Inclusion is coming!

Or, in the words of the Department of Ability: Born to be different, born to save the world.

Visit the Department of Ability website to read the comic strips. Alternatively, you can find out more on Facebook and on Twitter.

Want to see more characters disabled children can identify with? We would love to hear your thoughts. Leave a comment below to share your ideas.

The best thing about being a disabled dad or dad to a disabled child?

We put a shout out on our online community and social media, to find out what the best things about being a disabled dad or dad to a disabled child are. You didn’t disappoint.

Happy Father’s Day to all you legends! 

Dad sitting ont he soaf with his young son, who has Down's syndrome. They are reading a book together.

Hughie on Facebook: “I have an inspirational 11 year old boy who faces daily challenges but always has a smile on his face. He never lets his disability stop him from having fun and reaching his goals. He’s also supported by his little brother who is just amazing with him. Proud to be their dad. You are both amazing and love you all the world.”

Zec on our community: “My daughters are now 21 and 23 but I’m gramps to Oscar who’s 20 months old. Since he could sit up he’s loved sitting on my lap in the wheelchair. People seem fascinated when we go round the supermarket with him sat on my lap. Now he tries to push me in the wheelchair and he moves it.

The best thing is that he doesn’t bat an eyelid at me in a wheelchair, to him it’s just what gramps does and why wouldn’t he.”

Dad smiling and looking at his daughter who is sitting on his lap, who is making a funny face. She has Down's syndrome.Charlimaisdad on our community: “The best thing about being a dad to Charli-Mai is seeing her achieve milestones, and to see how much she gets out of life.”

FoodFatigue on our community: “For me it’s raising and seeing that my daughter doesn’t bat an eyelid when seeing other people with disabilities. She’s developed a great empathy and it’s great to see.”

Guy on Facebook: “I have had the wonderful privilege of easing and shaping the difficult life of an amazingly inspirational young woman, and it’s such a pleasure to see her flourish now!”

Speedincaesar on our community: “I love being a dad! Watching my daughter grow unfazed by differences. I love the conversations we have. Being a dad in a wheelchair has also given me the opportunity to meet other families with kids that may not have ever met a disabled person before.”

Martin on our community: “Being a dad is the one thing I’m most proud to be in my life.  Having a child with disabilities just amplifies that honour and pride. The two younger children get our eldest involved in everything they do, they see when doors need to be opened and recognise places his wheelchair won’t fit.

Two brother sitting togather at a football match, the youngest sitting on the lap of his older disabled brotherAn amazing moment for me was at a football match recently.  I campaign for better access to stadiums, and one of the things I asked for is accessible family seating so that families can enjoy a game sitting together. In our life it’s often our eldest getting looked after by his younger brothers, but at a football match I took this picture, where clearly big brother, is looking after the youngest.  Had a lump in my throat when taking this, and still do when I see it. It’s pictures like this that make being a dad the best thing in the world. Of course it may be Father’s Day on Sunday,  but I couldn’t be half the dad I am without the support of my wife, and their mum. Like football, being a dad or a mum to me is a team thing.  And when we’re on form, we make one hell of a team.”

We’d love to hear your reasons too. Tell us in the comments below. 

From Nike to Manchester United, brands are listening to disabled people

There have never been so many different ways to influence decision-making at all levels of society. Social media allows disabled consumers to have a direct conversation with brands and companies. They are taking notice.

Manchester United

Martin Emery is a life-long Manchester United fan and a father to three sons. Zac who is five years old, Ethan who is seven and Jordan who is now 18.

Jordan has a number of medical conditions, which means he has learning difficulties, has many seizures a day and uses a wheelchair.

Martin and two boys outside Old TraffordMartin was initially told by Manchester United that he couldn’t seat his family together, and Jordan could only have one carer with him.

Things then got worse before they got better.

A club official emailed Martin to say: “there are some clubs that would welcome you with open arms and possibly ask you to bring as many family members as possible, the downside is it wouldn’t be at Old Trafford, most probably Rochdale, Oldham or Stockport”.

Undeterred, he set up a campaign and website United Discriminates and kicked it off in a blog a year ago.

Read Martin’s blog on the campaign.

The good news is that by the end of last season United had constructed a new accessible seating area for disabled fans, families and friends.

Consumers speaking out

Iconic high-street brand M&S recently launched an online range of bodysuits, sleep suits and vests with poppers in additional larger sizes. That was on the back of a Rita Kutt, the grandmother of a three-year-old Caleb, who has cerebral palsy, contacting the retailer. Read the discussion Rita set up on Scope’s online community.

They had difficulty finding clothes to fit him, as he uses nappies and is fed through a tube in his stomach.

Caleb’s family then set up a Facebook page called M&S and Me: Special Needs Clothing for Children, which now has more than 4,500 members.

When M&S wanted to test their new designs we arranged for parents from our Scope community to trial some sample sizes with their children. Their feedback helped to shape the products.

The new range of clothes cost between £3 and £7, cheaper than similar items of clothing for disabled children currently available in the market.

The influence of social media is growing

Social media allows individual consumers to have a direct conversation with brands. Nike developed an easy grip trainer in response to an open letter from a 16 year-old boy with cerebral palsy.

Lego introduced disabled characters after they were contacted by Toy Like Me, a Facebook campaign run by a disabled mum, who realised that there weren’t enough toys representing disabled people and children.

A growing number of businesses are taking action in response to the Extra Costs Commission, an independent inquiry that last year found daily life costs more on average for disabled people. In response to the report, ride-sharing app Uber launched UberAssist in the UK, a service that allows disabled passengers to call specially trained drivers.

Thinking about what disabled consumers need makes sound commercial sense

There are over 11 million disabled people in the UK and their spending power is over £200 billion a year.

In February, ticketing agent The Ticket Factory following complaints from disabled customers upgraded its booking system to allow disabled people to buy tickets.

Barclays Bank has launched a new portal on its website that supports businesses to make their services and products more accessible to disabled people.

What we need now is even more companies to listen to disabled consumers and recognise the power of the purple pound. Let us know in the comments below if you’ve come across any brands going the extra mile for their disabled customers. 

Come on supermarkets – please stock nappies for disabled kids

Laura is a mum on a mission. She’s noticed a big gap in the market, and is campaigning for supermarkets to start stocking nappies in larger sizes. Here she tells her story. 

“Nothing worth having comes easy.”

Laura and her son Brody smiling on a rollercoaster rideMy life (well, house) is full of quotes. So much so, my best friend jokes with me about it. Still, on the days I feel like I’m fighting a lost cause, this one drives me.

Around a month ago, I started a change.org petition asking leading UK supermarkets to consider manufacturing or selling larger sized nappies, for incontinent children with additional support needs.

There are thousands of children in the UK, older than “typical” children, who are not potty trained. Naturally, as a result they require bigger nappies. Are they easy to find? Of course not!

My son Brody

A close-up photo of Brody amilingBrody has Global Development Delay, epilepsy, hypotonia and hypermobility. In our special world, he is known to a large community as a SWAN – not yet diagnosed with a syndrome to explain his disabilities. Brody is a tall four-year-old. He wears the largest nappies available in supermarkets (– 6+),  but they are fast becoming too small for him. Frustration with this led to my campaign.

Whenever my campaign is posted somewhere on social media, I get people commenting with recurring suggestions: the continence service, pull ups and cloth nappies. Let me explain why, despite this service and these products, I strongly believe there is a huge gap in the market for bigger nappies in stores.

What’s currently available

Brody has recently been referred to the continence service and hopefully, after a waiting time (my friend has been waiting six months so far) we will receive a set amount of nappies per day. These will arrive in bulk. The continence service is great and very much needed for families like ours. However, the service itself is inconsistent, varying greatly depending on where you live in the UK. This becomes more apparent, the more I speak to others. For example, I’ve heard from families who have children with autism who aren’t entitled, families who are only allowed two nappies a day, and families who aren’t eligible for the service until their children are six to eight years old. One woman told me her child has severe chronic constipation, requiring medication and at least 10 nappies daily. But she’s not yet entitled to any help from the NHS.

Pull Ups, which come in slightly larger sizes, are designed for children in the process of potty training. Hence there are fewer nappies in a pack and the absorbency isn’t as good. They’re not adequate for a child who is doubly incontinent. Not only this, it would cost a small fortune for parents to buy Pull Ups, as one pack may last only a day or two.

Cloth nappies may suit some children with additional support needs, and there are some fantastic companies where parents can buy these online. However, this isn’t a best fit solution for every parent and child for many reasons (although, I’ve found a lot of cloth nappy fans will argue this point).

Life costs more when you’re disabled

The simple truth is thousands of parents require larger nappies because their children are either ineligible for the continence service, or require more nappies than they receive. As such, they are forced to buy online because they have no other choice. These nappies come with the classic ‘special needs’ price tag – overpriced! The sad reality is – life costs more when you’re disabled.

Online shopping can also be inconvenient because you have to wait for an order to be delivered. Not as simple as popping to your local supermarket when you’ve run out of a product.

Disabled consumers are a big market

Brody on a red plastic rockerIf you are in my shoes, you’ll be all too aware that people don’t think about these things unless it affects them. However, it really shouldn’t be this hard. The Extra Costs Commission report noted that there are over 12 million disabled people in the UK – that is almost 1 in 5 of the population – and our households’ expenditure, the so-called ‘purple pound’, totals £212 billion a year. That’s a lot of money. And high street businesses could take advantage of it.

I strongly agree with Scope that by sharing information about our needs and expectations as shoppers, and by being more demanding as consumers, companies will have the market data to serve us better. We need to shout loud and let our voices be heard!

We are a community, used to fighting battles. Please fight this one with me. Sign the petition and share it with your friends. Maybe together we can make a difference – one that would benefit many families.

My message to the supermarkets?

You have the opportunity to take the lead and cater to a huge consumer group – one that is often disregarded. Please listen. This is about supply, demand and inclusion. It’s simple – there is a demand for this product and you can provide it. Just take M&S as a wonderful example. Grandmother, Rita Kutt wrote to them and explained the need for larger sized clothes with popper buttons for disabled children. They listened! We are consumers – like everyone else – that should be heard.

What do you think? Could you benefit from being able to buy this product in a supermarket near you?

The Extra Costs Commission has called for disabled consumers to be ‘bold and loud’ just like Laura.

Self-publishing: How do I publish my book?

Following our In The Picture campaign to include disabled children in the books they read, Scope published children’s storybooks,  My Brother is an Astronaut and Haylee’s Friends.

As a result, we receive quite a few approaches from people wanting to publish books about their experiences of disability, either as a disabled person or family member.

Much as we might like to, we can’t become a mass publisher but we’d love to see your books get published! Here are some people we know who have done just that.

Brighton Face 2 Face parent befrienders

Brighton Face 2 Face parent befrienders with their Paperweights book
Brighton Face 2 Face parent befrienders with their Paperweights book

Parents and carers of disabled children in Brighton and Hove joined a creative writing group and have published an anthology of their moving poems and short stories.

Kate Ogden, who ran the group, says: “The woman on my course inspired me, impressed me and surprised me. I believe it was the first course of its kind for parent carers, and I really hope it wasn’t the last. We have dreams of taking this nationwide, and the group went from struggling to say things out loud to shouting from the rooftops: our stories must be told.”

Parent Tracy Harding agrees, “We came together as strangers with something in common: coping with our children’s diagnosis through every type of obstacles life put in our way. All of us felt the therapeutic effect that comes from listening to others’ stories. Deeply identifying with every personal story. Opening our hearts and feelings with complete strangers brought us so close. Even though the disabilities were so diverse among our group our experiences were all so similar. Our anthology shows evolution and the journey from acceptance to continuing progress.”

The collection, Paperweights, is available to buy at Waterstones in Brighton  for a donation of £5. All the money raised from the sale of the books will go to the Brighton Face 2 Face appeal.

Beaumont College: Creating Catpig

Disabled students from Beaumont College have written and illustrated a children’s book called The Adventures of Catpig.

Catpig
Catpig

Beaumont’s Lauren Blythe says: “We created the book by hand using various craft materials, then we scanned each page into a Word document. We then printed these flat pages out and went around each character with a permanent marker due to our lack of Photoshop technology. We then scanned in our hand-edited pages and pieced them together on a Word document. The next stage was to send this document to a printing service”

“We have been lucky enough to win a creative enterprise award, which we collected at a local awards ceremony. We also did a speech using a communication device to share with the public something new they might not have seen before.”

Contact lauren.blythe@scope.org.uk if you would like to purchase a Catpig book, mug or shopping bag!

Crowdfunding for books

Here are some examples of books looking for funding:

Tips for aspiring authors

Tips for a stress-free Halloween and bonfire night

The nights are drawing in, which means Halloween and Bonfire night are almost upon us. For some disabled children, it can be quite a stressful time of year, so we’ve put together some top tips from our online community.  

Be prepared

Have a calendar, and count down the days to Halloween with your child. If they like knowing as much as possible about everything, it can be really helpful for them to learn lots of facts about Halloween such as where it originated from, and why it is still celebrated today.

Any day can be Halloween!

My daughter gets scared of the costumes at Halloween, so I encourage her to dress up at any time of the year to help her understand about costumes and that dressing up doesn’t change the person underneath the outfit.

Gauge your child’s reactions

Always keep an eye on how your child is handling the situation, whether it’s Halloween or fireworks. Even if you have prepared for every possible scenario, they may still have a difficult time engaging in activities. Pay attention to their cues and if it’s all too much, it may be best to remove them from the situation and go home.

Distract with snacks and games

Familiar toys, games and snacks can provide comfort and distraction from over-stimulating sights, sounds and smells. These favourites can also come in handy if your child gets anxious while waiting for the fireworks to start.

Wheelchair friendly pumpkin

Daisy can’t go out but she loves to answer the door in costume and hand out sweets. Last year we carved a wheelchair symbol into her pumpkin.

Knowing what to expect

Whatever you’re planning this bonfire night, make sure your child knows what to expect. If your child responds to visual cues, try showing them a video of fireworks (with the volume turned down at first). Although it’s important they know what to expect, try not to go overboard. Sometimes too much anticipation can be just as overwhelming.

Lead by example

If you’re calm, your child is more likely to stay calm. If you start getting anxious, they are more likely to pick up on your cues.

Keep your clothes on

Some children with sensory issues may not like the feel of costumes – a lot of them can be quite synthetic and scratchy. Try letting them leave their own clothes on – or pyjamas – underneath.

Wheels of pumpkins

I have seen some great designs on Google. Sadly, I am somewhat lacking in the artistic skills department so I will be keeping it simple by turning the wheels on my daughter’s chair into giant pumpkins!

Keep your distance

View firework displays from a distance. There’s no reason you have to be right up close. Most displays are better viewed from a distance. Stand away from the crowds. If you are having fireworks at home, let your child watch from indoors where it is warm and they can enjoy the display without the loud noises.

Use headphones

A set of headphones can help block out loud noise and reduce the anxiety that people with sensory issues experience around fireworks. You could even play soothing music through them.

Let your child take the lead

Don’t force your child into participating in Halloween. Let them engage with it however they want to and at their own pace. They may never want to take part, and planning a different activity to do on that day and evening could be a much happier and calmer experience for all involved

Alternative mask

If your child doesn’t want to wear a masks try giving them one on a stick that they can hold in front of their face as and when they want to.

Adapt your child’s own clothes

If your child doesn’t like wearing an unfamiliar costume, make one using their own clothes, so they feel more comfortable. For example, take old leggings and a T-shirt and tear them to make a zombie costume.

These tips were all contributed by parents of disabled children. Find more great tips like these, and share your own on Scope’s online community.