Tag Archives: disabled children

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.

Through the Eyes of Me will be published by Graffeg on 24 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.

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. 

“Your child is not the diagnosis they’ve been given” – Chloe, the CP student blogger

30 under 30 logo

This story is part of 30 Under 30.

 

Chloe Tear an 18 year-old blogger who has mild cerebral palsy. She’s the creator of Life as a Cerebral Palsy student and also an Ambassador for CP Teens. 

As part of 30 Under 30 campaign, she has shared an open letter to parents of children with Cerebral Palsy.

I cannot begin to imagine what it is like to hear the words “your child has Cerebral Palsy”.

Initially, it’s probably expected that you will have thousands upon thousands of questions about expected progress, attainment, abilities / disabilities, meeting milestones and so much more. Now, if you have been in this situation, I expect you know that these questions cannot be answered in any great detail – with the vast majority left to play the ‘waiting game’ with approximations.

Like any ordinary parent, you may research Cerebral Palsy (CP) in the hope of finding these answers or at least a bit of support in this new unknown world for you and your child. Everything I can tell you is purely based on my experience over the last 18 years (as CP is unique to everyone and part of quite a large spectrum), but I hope it can at least give you a possible glimpse into the future: the highs, the lows and everything in between.

1. They will surprise you

Doctors have a way of airing on the side of caution and making predictions based on little information right from the start. However, people with CP are often determined to challenge these predictions which they have been given. I may not have received my CP diagnosis until the age of 7 but being 8 weeks premature made even surviving a matter of fighting the odds. At that moment in time, it would have been impossible to write the next 18 years and all the challenges which have come my way, but also all of the victories- because there has been plenty of them!

It may have taken longer to walk, run, ride a bike, tell the time but woe betide anyone who says I cannot do anything. Even if it may take them longer, I guess that can make it even more special when they get there. Your child will have their own unique milestones and their own victories, no matter how small they may seem.

Chloe in her wheelchair smiling and taking a selfie with a Minnie Mouse character

2. There will be frustration

I would be lying if I said it was all plain sailing – but isn’t that the case with everyone? The hospital appointments, the physiotherapy, the urge to fit in with peers. At times, it can be incredibly difficult and I can assure you that many tears were shed.

When I was younger I was such a girly girl, everything had to be pink and pretty- trainers and a splint didn’t really fit the look I was going for. All I wanted was nice pretty shoes. We spent hours in shoe shops (and even a few shoes were thrown in sheer anger as the ‘perfect’ pair of shoes wouldn’t fit over my newly cast AFO splint).

Or maybe the frustration will come from coming last at a sports day running event when all you wanted to do was win for once. People with CP are resilient, we have to be, but that doesn’t mean it’s all progress.

3. Family and friends are all the support they will need

The support that you get from friends and family can be fundamental. At the end of the day, we all need a little helping hand – some people just need a little more.  I have found that having friendships with other young people who have CP can be incredibly valuable. The opportunity to share similar experiences and to know you are not alone can certainly help when you are having a rough day. And by having other people with past experiences (who may even be older than you) can be a glimpse of how things might be. For example, I am currently planning university and speaking to other young people who are at university at has been really reassuring.

A black and white photo of two people walking away from the camera with Chloe in the middle in her wheelchair

4. They will be amazing at adapting

Who says that you have to do everything just like everybody else? From personal experience, I know that sometimes it is actually easier to do things in your own way – in order to get the same result as everyone else. This could be mastering tasks with one hand, like tying shoe laces or eating a meal.

Adapting is often part of each day and at times can be difficult to come up with solutions, but you do get there. For some people adapting can include the use of certain equipment in order to gain independence. From experience I know this can sometimes result in a love – hate relationship. However, it can allow loads more freedom and give you the ability to achieve much more – it might just take time to adjust.

5. Humour will get you through

Sometimes you just have to laugh, even if that is just so you don’t cry. Laugh at the fact that you have ended up on the floor – again! Or laugh at the fact you did something and might have looked a bit silly. Yes, at times this can be hard, and laughing isn’t always the answer, but it will certainly help.

“When you find humour in a difficult situation, you win” – I believe this is so true and certainly a quote to live by!

Chloe with lots of friends wearing Christmassy outfits and laughing

6. The diagnosis is a very small part of your child

Your child is not the diagnosis they’ve been given, they are not solely the label put on them. First and foremost, they are your child, who just happens to have Cerebral Palsy, just like they happen to have blue eyes or brown hair!

A diagnosis may seem like it is taking over at times but really it is only one piece of the thousand piece puzzle that makes up a child. Having Cerebral Palsy can open so many doors and opportunities, it can make your child unique in the best possible way. The diagnosis is what you make  of it, and if I was to pass on one piece of advice. It would be to turn those obstacles into opportunities, don’t look back and never ever put a limit on what you can achieve.

Chloe is sharing her story as part of our 30 Under 30 campaign. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To read more from Chloe, visit her blog.

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.

Top tips for inclusive half term holiday fun

Half term doesn’t have to break the bank. Visit your local Scope shop and chose from lots of toys, DVDs and other fun activities to keep the kids entertained.
Find your local Scope shop

Wondering how to entertain the kids this half term? It’s never easy trying to juggle everyone’s needs, so we asked our online community for ideas. Here’s what they came up with:

Get out and about

Euan’s guide

Use the Euan’s guide website & app to check out access in places you want to go or for ideas of things to do in your area.  Better still, upload your own reviews to help others and expand the coverage of the website. Reviews include features such as accessible toilets, carers discount, disabled parking and dedicated seating etc.

Free copy of the Rough Guide to Accessible Britain

Download a free copy of the Rough Guide to Accessible Britain, which has got loads of great ideas for accessible family days out.AccessibleBritain_cover_2014

Free lunchtime concerts

Most big cities have free lunchtime concerts if you look out for them.  If you live in London, you’re spoilt for choice!

Accessible countryside for everyone

If the weather’s nice, head outdoors. Accessible Countryside for Everyone  lists wheelchair walks, buggy walks, easy walks, support organisations, disability sport info, camp site with disabled facilities and more. Visitwoods.org.uk also lists over 10,000 woods open to the public, and allows you to search for  features such as car parks and wheelchair access.

Children playing with toys

Toy libraries

Most Toy libraries have specialist toys for disabled children to borrow. Many projects also have stay and play opportunities. There may also be mobile home visiting services. Find out more at the National Association of Toy and Leisure Libraries.

Just ask!

Most attractions offer disabled discounts, special access or carers-go-free solutions, but people don’t often think to ask. Do ask whenever you are visiting any facility, as it can save you a small fortune.

Free cinema tickets for carers

Apply for a Cinema Exhibitor’s Card, which allows disabled people to obtain one free ticket for a person accompanying them to the cinema. The card costs £6.00 and last for one year.

Get away from it all

Tourism for all

Disabled child surfboardingPlanning a short break? Check out Tourismforall.org.uk  which provides useful information on accessible holidays in the UK and abroad. Their website also has a directory of holiday venues.

Disability Holidays Guide

The Disability Holidays Guide lists specialist tour operators for wheelchair users. You can search the guide for accessible hotels, villas and cottages. You can also find travel insurance, hire accessible transport and pre-order mobility aids and equipment.

Accomable

Described as ‘Airbnb for disabled people’  – if it’s just accommodation you’re looking for, check out Accomable for listings of accessible places to stay in the UK and abroad.

Get creative

Child with painted face sewing

Treasure hunt

My kids love a treasure hunt. The other day we collected sticks to make a pretend camp fire. Other times the ‘treasure’ has been stones or daisies. It’s a good, inclusive activity disabled and non-disabled children all enjoy.

Cheerio necklace

Try threading cheerios with your child to make an edible necklace.

Smelly socks game

Use up some old small socks or go to a charity shop. Then scent some cotton wool balls with different smells like tea, coffee, lemon, apple or tomato ketchup. Try a variety of smells, taking care not to use anything to which your child may be allergic. When the cotton balls are dry and all the ingredients are placed in the socks, tie the socks up with a ribbon, and play a game of Guess the smell.

Wrapping paper’s not just for Christmas

If your child is visually impaired children or has a sensory impairment, sparkly Christmas wrapping paper is very good for catching and holding attention. Gold, in particular, or anything with a rainbow/prism effect seems to work well to stimulate those with visual impairment.

Pitch perfect

Play tents make great sensory spaces when kitted out with everyday items e.g. fairy lights, hanging old CD’s, tinsel, etc…

Get scribbling

Stick some blank paper on a wall somewhere and turn it into a ‘graffiti wall’. You can also paint a wall with blackboard paint or put up a big white board for graffiti fun.

Children's artwork

Star in your own film

Use your camcorder – or the video on your phone if you have one  –  to make a film  of a favourite book. We did The Tiger Who Came to Tea, using a toy stuffed tiger, shots of our table set up for tea, empty food packets, and a homemade cardboard claw peeking round the front door. You can do lots of voiceovers to explain what is happening, or do it documentary-style and interview the Mummy, the child, the cafe owner, Daddy, the Tiger etc.

Get gooey

Make home-made slime. Get a pack of cornflour, mix it with water so it’s gloopy but not runny and then add green food colouring.

Life-sized cardboard cut-outs

Use either a large piece of card or lining paper (joined together, if necessary). Draw around each other and cut up old clothes and cloths to dress your portraits up.

A real catch

A velcro ball and catch mitt set has been fantastic for my son, who is unable to catch a regular ball. Great for fun, cause and effect and coordination. Ours was under £5 from eBay – check out ‘Spordas No Miss’.

Cinema club

Turn your house into a cinema. Choose a DVD together (bought or borrowed from the local library) make tickets, posters etc. Invite friends if you’ve got the space and then make popcorn, close the curtains and enjoy.

Make a den

My daughter loves it if we put a sheet over the dining table and make a den. I bring some of her sensory lights in and we all sit underneath. Her brothers think it’s great too!

Home-made jigsaw puzzle

I’ve found a good cheap way to keep my daughter occupied is to get her to choose a picture from a magazine, then I cut it up, and she reassembles the picture, gluing it on to paper. You can use photos as well. You can make it as simple or complicated as you want. I use simple ones to help calm her down and more complicated ones when she needs a new distraction.

Dance competition

Put on the music and have a competition.

Sensory play

We use a plastic box and fill it with different things for sensory play. Sometimes dried beans, sand, shaving foam – we put different smells in like vanilla essence or curry powder to make it more interesting. Sometimes we squeeze toothpaste in which is good fun when you get it all over your hands because it dries quickly.

Word games

We’ve been using words on the back of paper-clipped paper fish with a magnetic fishing rod to make a game out of reading.

Rubbish instruments

Raid the recycling and make some musical instruments. Fill jars and plastic containers with rice to make shakers, elastic bands over a box can make a great guitar and balloons stretched over tubs for some bangin’ drums!

Glitter party

Poppy has very little fine motor skills and struggles with most art and craft activities. So I stuck some wrapping paper to the wall and we made hand prints on it. Then we cover it in glue and threw glitter at. Messy but great fun!

Sensory wall

We’ve created a ‘sensory wall’ by sticking old yoghurt pots on the wall – you can also put bubble wrap, biscuit packet insides, corrugated paper, sand paper ….

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.

Descriptive praise – how to get your child to cooperate!

This is a guest blog from Noel Janis-Norton, our online community’s parenting advisor. Here she explains how to use a technique called ‘descriptive praise’ to get your child to cooperate. 

One of the most frustrating things about being a parent is the endless repeating and reminding, just to get our children to do what they’re told. In the heat of the moment it’s easy to forget that children aren’t born knowing that they’re supposed to do what we tell them to do. Cooperation is a habit that they need to learn.

Mum and dad playing at a table with their young disabled daughter

My definition of cooperation is that our children do what we ask them to do the first time we ask, and without a fuss. Thankfully, it’s never too late to guide children and teens into the habit of cooperating. Of course children aren’t robots, so they’ll never be perfect. But it really is possible for children and teens to get into the habit of cooperating 90% of the time. That’s what the programme I’ve developed – Calmer, Easier, Happier Parenting, can help you achieve.

If your children tend to ignore your instructions, or if they argue or say “in a minute,” a good question to ask yourself is, “how can I motivate them to want to cooperate?” You’ve probably noticed that threats and telling off don’t actually motivate, but luckily there are more effective ways. One useful technique is descriptive praise. This is the most powerful motivator I’ve ever come across.

Two young brothers and their sister playing with multi-coloured plastic bricks

Descriptive praise is the opposite of how we usually praise.  Generally, we try to encourage good behaviour by using lots of superlatives: “Terrific!”, “Wow!”, “Brilliant!”, “Amazing!” But superlative praise is so vague and exaggerated that the child is often unclear about what was so great.

Descriptive praise is far more effective. Just describe exactly what your child did right or exactly what they didn’t do wrong, being very specific:

“You did what I asked the first time. You’re cooperating.”

“You didn’t say “In a minute”. I asked you to set the table, and you did it straightaway, without any complaining.”

Mum kneeling on the floor hugging her son

In my book, Calmer, Easier, Happier Parenting, a mother explains how descriptive praise motivated her six and eight-year-old sons to become more cooperative:

“The day after Noël’s seminar, I told my boys to wash their hands for dinner. The younger one hopped up to do what I said. I jumped in with descriptive praise, saying “You’re a first-time listener.” As soon as I said this, his older brother got up, saying “I’m a first-time listener too”, and rushed off to wash his hands. I hadn’t expected my words to have such an effect. The next day my six-year-old washed his hands and came to the table, saying “Look Mum, I’m a no-time listener because I did it before you even asked!”

When you make a point of mentioning each time your children do what you ask the first time, soon they will be cooperating more and more. You can use this strategy to improve any behaviour that’s problematic.  Descriptive praise brings out the best in children, even in teenagers!

In this short blog I can only scratch the surface of this useful parenting tool, so you’re bound to have questions. In my CD called Descriptive Praise, The #1 Motivator, I answer all the questions parents have about putting descriptive praise into practice, and give lots of examples you can use to improve a wide range of family issues.

Dad mixing cake mixture in a bowl with his young daughter with cerebral palsy

As important as descriptive praise is, it’s not the only strategy you’ll need to bring out the best behaviour in your children and teens. But it’s the first strategy. So for the next four weeks, take the Calmer, Easier, Happier Parenting challenge and start using descriptive praise whenever you notice your children doing something right or even any tiny improvement. You’ll see positive results sooner than you can imagine.

Got a question for Noel? Ask her on our online community