Tag Archives: Children

Bullied for being disabled, but we turned it into a positive – Anti Bullying Week

Rosie and Glen were both bullied at school because of their impairments. In this blog they talk about how they moved forward with their lives and want to spread awareness about the bullying many disabled people face. 

Rosie’s story

“Being bullied made me determined to raise awareness about invisible disabilities”.

Being dyspraxic meant at school I always stood out like a sore thumb compared to others.

From the way I walk and move in a clumsy uncoordinated way which was different to others, always falling or bumping into others or other things.

To it’s made me socially anxious and struggle to maintain friendships. I always had and probably will have different interests to people my own age. I’ve always been seen as disorganised, chaotic, messy and a bit all over the place.

Being so different made me an easy target for being at the receiving end of some awful bullying. Words can have such an impact on your life and how you see and perceive yourself. It made me lose what little confidence I had to begin with and really struggle with my mental health and I would hear the words of what people were saying constantly. I thought I must really be stupid as it was constantly being said to me.

I put a lot of the bullying due to lack of awareness to what dyspraxia is, the fact that dyspraxia is invisible to the eye and negative assumptions of what I could or couldn’t achieve. As an adult I still struggle with anxiety and will never be a naturally confident person.

But my experiences made me decide that nobody should have to go through what myself or my family had been through and I was determined that more awareness needed to be raised about issues invisible to the eye.

Rosie 1 edited square

The bullying I experienced has taught me the power of words and why I choose mine so carefully and not make judgements and assumptions about others.

I work as a learning support as a college and know the value of time, patience and empathy can have on students who may be struggling. I have also been able to prove the people wrong who said I wouldn’t achieve anything.

Words have the power to encourage, destroy, make someone loose confidence in themselves or make someone feel hopeful. We can all try and help people feel hopeful.

Glen’s story

“I’m still a little bit shy and probably always will be, but I’m far more positive now”.

I first went to a mainstream school, but it didn’t go well. The teachers didn’t know how to help, and I was bullied by other kids because of my sight loss. So I was removed very quickly, and transferred to a school for the visually impaired that my parents discovered.

Of course, my confidence had been shattered, so I was very shy. Which led to some of the kids at my new school bullying me as well. Not because of my sight, as they were in the same boat, but because they realised they could wind me up easily.

Glen wearing a suit in a park

However, I made good friends, and the teachers were extremely supportive, so my confidence gradually improved over the years. And I even became friends with the kids who had teased me at first. Partly because I was being more successful than them, but I also got to learn more about them, which helped me understand their behaviour and put it into context. We learnt a lot from each other.

So things turned out well in the end. I came away with great friends, fond memories and good results, and got myself a degree and a job. I’m still a little bit shy today, and probably always will be, but I’m far more positive and confident than I would have been if I hadn’t moved schools when I did.

This is an extract from Glen’s blog Well Eye Never. You can read Glen’s full post about bullying here. 

If you have a story you would like to share, contact Scope’s stories team.

Do you need someone to talk to?

ChildLine – 0800 11 11

ChildLine is a free, confidential support service for children and young people. Their staff speak to thousands of young people every day – you are not alone. Phone 0800 11 11 or visit the ChildLine website.

“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.

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.

6 steps to encourage healthy eating habits in disabled children

Deborah French is a cookery teacher and activity coordinator for disabled children and their families. She has a son on the autistic spectrum, a daughter with Down’s syndrome and young twins, and is the author of a new cookery book for disabled children.

This blog has now moved to our online community.

Join Deborah on our online community.

“Shopping with my son and wheelchair in tow is a challenge.”

Claire is a mum to Daniel who is six. Daniel has profound and multiple learning difficulties. Claire has discovered a great solution for taking her son on their weekly food shop and wants everyone to campaign for better trolley access.

As a mum, taking my son to the weekly shop is a really common thing. But, shopping with my son and wheelchair in tow is a challenge.

I really struggle with both the standard and disability trolleys that are available in most supermarkets. Neither provides my son Daniel with the trunk support that he needs. It is also impossible for me to lift him in to a standard trolley. He’s just too heavy and tall now.

This leaves me with very few options. I could do my weekly shopping online, leave Daniel at home while I go shopping, or settle for buying what I can carry as I push his wheelchair.

I am sure that this is a familiar story to many parents of disabled children up and down the country. All of this changed for me when Sainsbury’s rolled out the GoTo Shop trolley to 650 of its larger stores.

The GoTo Shop is an adapted trolley for disabled children that provides extra postural and head support and a secure five-point harness. The GoTo Shop Trolley keeps Daniel safe and secure on our weekly shop.

The GoTo Shop Trolley has been a revelation for us, it makes life so much easier and Daniel actually really enjoys our shopping trips.

I think every family with this a disabled child should have the opportunity to use a GoTo Shop Trolley, this is the reason why I became a GoTo Shop Trolley Champion.

I am very lucky I have two Sainsbury’s stores near to me, but I like having choice. I love collecting my Tesco Clubcard Points, you can’t beat the Asda Mother and Baby Events, Marks and Spencer for little treats and Lidl fruit and veg every time. So you see, I’d like every supermarket in the UK and Ireland to have a GoTo Shop Trolley.

If you’re looking for a supermarket with GoTo Shop Trolleys, you can use the Firefly Finder App.

How to get involved

If like me you’re a parent of a disabled child, who would love to have the option of shopping where and when you want to, then we need to work together to tell every supermarket about the difference a GoTo Shop Trolley can make to our lives.

All you have to do is print out and add your name to this leaflet (PDF) and hand it in to your local supermarket managers.

Let’s raise awareness of the challenges we face in our daily lives as parents of disabled children. By showing how simple solutions can make a huge difference to families like ours we can encourage all our supermarkets to provide GoTo Shop Trolleys.

If you’re not a parent or carer of a disabled child, don’t worry! You can still get involved. Support the #GoToShop Trolley in #EverySupermarket by using our ‘Friends of’ leaflet (PDF).

You can read more about the Firefly Garden GoTo Shop Campaign on their website.

“I wasn’t going to do it for charity this year. But I saw Scope is the official charity – it made sense!”

On 2 August more than 15,000 amateur riders will take to the streets of London and Surrey for the third Prudential RideLondon-Surrey 100 – a 100 mile route on closed roads.

700 of those will be taking part for Scope as part of our official charity of the year team, and one of those is Carl. He knows the route having taken part in 2014 and will be hoping the sun shines, unlike last year!

“Box Hill was okay. But Leigh Hill was shut, we had to go down a diversion because of the weather and that was horrendous. So I’m hoping it’s not like that!” A keen cyclist, he’s often out with his friends testing themselves on the local hills. But there’s nothing quite like event day. “I think if you ride for a charity, the support you get on the day is fantastic. I rode with a couple of friends who weren’t riding for charity and they were completely in awe of us getting cheered on.”

Carl’s reason for taking part is his nephew. Connor was born prematurely and has cerebral palsy. Connor’s mum, Lauren, explained how they initially found out about his diagnosis through their physiotherapist. “One day I got asked to fill in some forms – I asked her for help because it asked what was wrong with him and I didn’t quite know what to say. She just said “well it’s cerebral palsy” but nobody had actually told us that. We were quite shocked. We just thought it was because he was premature, that he would catch up.”

Connor has received fantastic support from the local community. His first play group had a sensory room and it was here that he first walked – a great milestone when the family had been warned he probably wouldn’t walk or talk. “He walked properly. He was nearly three when he started, the same week as his cousin who was one.”

The family first came across Scope when they were looking for help choosing Connor’s secondary school – the local authority recognised that Connor was bright and wanted to place him in a mainstream school. But Lauren and her husband, Kevin, felt that Connor progressed more with one to one support at a specialist school. Connor went on to prove them wrong, attending the local secondary school and gaining good results in his GCSEs. From speaking to Scope and another charity called Network 81, they were able to encourage the school to make the alterations Connor needed for his education, including having his lessons on the ground floor instead of up two flights of stairs. But now, the real work begins – deciding what Connor should do once he leaves college. Connor is keen to get involved in a local community project, the Harwich Mayflower project, where he can socialise and discuss doing an apprenticeship.

Cricket posterWhen Carl saw that Scope were the official charity for this year’s Prudential RideLondon-Surrey 100, he felt it made sense to do the full 100 mile route with us. “Technically I didn’t complete it last year. It was 87 miles; it wasn’t 100 (due to the weather) so I felt a bit of a cheat.” He’ll be continuing his training and fundraising over the next few months, including a cricket night called Essex Legends, hosted at a local venue.

There’s still time to be a part of Scope’s Prudential RideLondon-Surrey 100 team. Get your place today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike!

Four things we’ve learned about hospital stays – #100days100stories

Guest post by Anna from Oxford. Anna works for Scope coordinating our Face 2 Face befriending service in Oxfordshire. She has a disabled daughter, Scarlett. Anna is sharing her story as part of our 100 days, 100 stories campaign.

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I’m not sure how many times we have been in hospital over the years.

My eight-year-old daughter Scarlett has a genetic condition which means she can’t produce hormones the body needs to deal with stress, illness or injury. This means a sickness bug is life-threatening for her. She also has autism and sensory issues, which means she doesn’t always realise when she’s unwell, or let us know about it.

Scarlett is going into hospital again for surgery in two weeks’ time, and it’s led me to reflect on some of the things we’ve learned about hospital stays…

Every child has unique challenges

Scarlett’s sensory issues mean she sometimes has extreme reactions to things that might seem harmless. For example, she has always hated having anaesthetic gel (‘magic cream’, in children’s hospital-speak) put on her arm before she has a blood test or an IV tube put in.

When she was a baby I thought it was because she was anticipating the pain, but now I know it’s because the feel of it makes her sick. She actually vomits looking at some creams just at the thought of it on her skin.

Scarlett and her two-year-old sister both looking through cameras, standing at the top of a hill
Scarlett with her little sister, Heidi

Explaining this at hospital can be hard – she has been told many times “Don’t worry, it doesn’t hurt”, but to Scarlett, it really does!

It’s hard work for us, too

I am up almost 24 hours a day when Scarlett is in hospital. During the night I’m often up every hour to comfort her, or help get her to cooperate. It’s difficult to even leave the ward for a cup of tea.

A lot of care is expected to come from us rather than the hospital staff. The nurses do an amazing job, but they are often very stretched, and I can’t imagine what would happen if every parent handed over all their care duties to them.

It is also really expensive! My husband Andrew, Scarlett’s stepdad, often has to take time off work, and there are things like parking and food to pay for. Parents and carers lose their DLA if the person they care for is in hospital for more than a week, and I think this is shocking.

Explaining things can be difficult

It can be hard to explain to Scarlett what’s happening, and particularly why she has to endure so much that her younger sister Heidi doesn’t.

I’m always on the look-out for children’s books about going to hospital that don’t involve ‘getting better’ at the end. I have seen lots about having tonsils out, or a broken leg, but Scarlett’s condition will never go away, which can be hard to explain.

Scarlett and Heidi on a toy tractor

I find the best approach is to be fairly honest and say that the medications, procedures, operations and masses of appointments are there so to give her the best chance of staying well.

…But it gets easier

Taking Scarlett to hospital, and seeing her looking awful, has become less of a big deal over the years, but it is always a reminder of how fragile she is.

Scarlett lying back on a sofa, stroking a cat
Scarlett with Dolly, one of our cats

When she was born, I remember being scared about taking her home because there was so much to remember. I was so anxious that I even bought a breathing monitor after a scary incident when I couldn’t wake Scarlett up.

Even now, I find myself looking at the doctors’ faces to see if they seem worried, and starting to panic – what if this is the time things don’t turn out okay?

But generally it has been far easier than I thought it would be in those early days. You adapt as a family, and Scarlett is very happy, lively and brave in dealing with the things life has thrown at her.

We’re into the final weeks of our 100 days, 100 stories campaign. Read the rest of the stories so far.

My daughter cannot speak, but we communicate in so many ways – #100days100stories

Guest post by Amanda, who is coordinator of Scope’s Face 2 Face befriending service in Brighton. Amanda’s daughter Livvy (below) has very complex impairments and does not communicate verbally. Amanda has shared her story as part of our 100 days, 100 stories campaign.

Head and shoulders shot of Livvy, looking down

One of the first questions people ask me when they meet my amazing 14-year-old daughter Livvy is, “Does she talk?”

Well, Livvy has no spoken language – she is ‘preverbal’. But, as we have learnt, there’s more to communication than the words we say.

I remember in the early days being so desperate to hear her voice. She babbled on cue at six months, but after an ear infection at eight months, she became eerily silent.

At first, we suspected her lack of communication was down to glue ear and that she couldn’t hear us, but after two grommet operations the words still didn’t come.

Livvy wasn’t playing social communication games such as peekaboo. She didn’t wave or clap. We spent hours with an inspirational speech therapist – she virtually stood on her head to get Livvy to engage, but it was very difficult.

Livvy with her brother Harry
Livvy with her brother Harry

Livvy then went through a stage of saying the word ‘more’ in a low, drawn-out way. You could sense the effort it took to push the word out. She would over-generalise this word, using it for everything.

And then, one day, she stopped, and we haven’t heard any words since.

Body language

But so much of our communication is non-verbal. Livvy’s body language is key to us understanding her mood, and she uses it to express choices or even an opinion.

This can be very subtle – a sideways glance, or a brief movement of her arm. She lets us know that she would like to get out of her wheelchair by moving her legs and arms and pushing on the sides.

Livvy can express pleasure by laughing, or annoyance with a low, irritated growl. She lets us know she is upset or doesn’t want to do something by raising the intensity of her vocalisation, or using a deeper tone of voice.

Livvy smiling at the camera

She most definitely recognises voices, and will turn to familiar people. I remember a few years ago rushing up to school as Livvy was not well after a very severe seizure.

Staff had struggled to calm her down and Livvy was pacing round the room, very agitated. I walked in and she immediately calmed down. It was a really memorable moment for me.

Livvy also used PECS (Picture Exchange Communication System) for several years before her epilepsy became so severe that it was too demanding.

We felt the power of this was that she realised she was sending a message to somebody else – she was having a two-way exchange, the very core of a conversation. We’re now looking at eye gaze technology as a way for Livvy to make choices.

Livvy knows she is heard

We chat away to Livvy constantly. We have no sense of how much she understands, so it is important to tell her as much as possible out of respect.

Family photo of Livvy, her brother Harry and dad Neil, smiling at the camera
Livvy with her dad Neil and brother Harry

We use intonation to give her a sense of what we are saying. We get close to her, we sit with her, I put my face very close to hers and tell her I love her. She cannot say it back but, very subtly, she will often smile.

Livvy knows that she is loved, that she is valued, that she is heard.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.

Read tips from our online community on non-verbal communication.

Disability Innovations: How magic is helping children with hemiplegia grab life with both hands

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We hope it will inspire more innovation in the disability field.

Breathe Magic

Breathe Magic is a creative approach to traditional therapy which uses magic tricks to put the fun back into children’s recovery and rehabilitation. They run ‘Magic camps’ in the school holidays for children aged 7 to 19 with hemiplegia, teaching children specially selected and scalable magic tricks as part of a fun and effective intensive therapy programme. The two week programme focuses on learning to use two hands by combining magic, circus skills, costume design, fabrication and theatre production in a targeted way, to improve motor skills and hand function.

At the end of the two weeks the children have the chance to show off their new skills to family and friends in a performance at a professional theatre. After the camp the budding magicians attend a once per month Saturday club for six months to help sustain their new skills, provide an ongoing peer support network and ensure lasting impact of the progress made.

The Secret Behind the Magic

Breathe’s approach to intensive motor therapy is well-researched and has shown clear clinical benefits and improved outcomes for participants. delivers clear clinical benefits and improved outcomes for participants. The programme is also in line with the National Institute for Clinical Excellence (NICE) guidelines for the management of spasticity in children, as it follows the HABIT (Hand-Arm Bi-manual Intensive Training) model which is a task focussed intensive bi-manual therapy.

Over the 10 days (60 hours) children work together with magicians, Occupational Therapist’s and physiotherapists on a one to one basis within a group setting, to learn and practice magic tricks which develop motor and bi-manual skills. Every trick requires the children to practise precise movements that incorporate the rehabilitation exercises therapists often ask children with hemiplegia to do to improve hand and arm function. Time old tricks such as the ‘cups and balls’ trick require the young magicians to turn a cup over in their hand and to pick up the ball using the thumb and forefinger. This helps to develop essential movements such as forearm rotation, grasp and release, and co-ordination. Similarly, rope tricks involve stretching movements and movements to increase dexterity.

The real magic is that these tricks can only be mastered with plenty of repetition – practice makes perfect! The repetitive nature of practising magic tricks helps to build up the child’s strength and dexterity in their weaker hand/arm. Every child has their own ‘Magic Diary’ to record the tricks they learn each day, and the tricks they should practice at home each evening. Although children know that the camp is designed to improve hand function, the real focus is always on learning magic and having fun, rather than doing the ‘boring repetitive exercises’ that children usually associate with therapy.

What are the results?

Turning the exercises into magic tricks helps children stay motivated and engaged, meaning exercises are no longer a chore but something children look forward to doing. And the results found are pretty impressive.

The programme shows sustained benefits across functional motor and psychosocial outcomes for the young people. The programme also addresses additional associated problems such as; parent/child relationships, psychosocial difficulties and self-esteem. 
The young people are often able to do daily living activities for the first time in their lives after completing the programme, such as getting dressed independently and cutting up their own food.  This increased independence resulted in parents and carers reporting a 50% reduction in extra time needed to support their child, equating to up four hours each day! The research results from the programme have been published in peer reviewed medical journals and presented at conferences around the world.

The performance skills taught as part of the camp are designed help to increase the children’s communication skills, self-esteem and general emotional wellbeing. Children and parents also reported increased confidence and a more positive outlook, which resulted in numerous additional benefits, such as improved performance at school.

Breathe Arts Health Research

Breathe Arts Health Research was founded in 2012, and is the social enterprise behind Breathe Magic. It is run by a small team of staff, which includes clinicians, academics, artists and business professionals.  The team work together with frontline staff, patients and their families to deliver new healthcare programmes which bring the arts and science into healthcare to improve health outcomes.

Breathe Magic has now been commissioned as a clinical service by the NHS Lambeth Clinical Commisisoning Group and NHS Wandsworth Clinical Commissioning Group, they are piloting adapted versions for children with mental health problems and adult stroke patients. Other Breathe projects include bringing music and poetry into hospitals, clinical healthcare settings and community centres, as well as putting on high quality performing arts programmes in hospitals in partnership with leading cultural organisations such as the National Theatre and the Royal Academy of Music.

Why we like It

We love how Breathe AHR combines magic and fun with therapy – words you rarely see in the same sentence! It not only has clinical benefits, but giving children magic skills also hugely boosts their confidence by teaching them they can use weaker limbs for tricks which even their friends at school can’t do! The magic camps ‘can do’ and fun approach to therapy focuses not on a child’s impairment but on talent and potential, teaching children to grab life with both hands!

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

To tell us about a Disability Innovation, please email innovation@scope.org.uk.

I had falls with my baby daughter in my arms. It was very scary – #100days100stories

Imagine being trapped in your home, alone, knowing you can’t safely care for your two small children. This was Soña’s experience last year, when her funding for a support worker was cut overnight. She has shared her story in an interview as part of our 100 Days, 100 Stories campaign.

Soña, who has cerebral palsy, was struggling to care for her small daughters, three-year-old Natalie and Mary, aged one.

Proud mum smiling at her three-year-old daughter
Soña with her three-year-old daughter Natalie

A support worker visited two hours each day to help her get out of the house, lift Mary, and take Natalie to nursery. It made a big difference, but it just wasn’t enough. Soña’s condition was getting worse and she was worried for the safety of her children.

“I cannot use my left hand at all, and my left leg is a few inches shorter than my right which makes walking difficult,” says Soña. “I’d get so tired just trying to walk from place to place, and I would lose my balance.

“I couldn’t go out with the children alone – I’d end up overturning their pushchair, and it would be dangerous.”

Devastating news

When Soña asked for extra support from her local authority, she was given shocking news. An official explained there had been a mistake with her case – she wasn’t entitled to any funding any more.

Couple in their thirties talking at a table
Soña and her husband, Adam

The family’s support was cut overnight. Soña’s husband Adam works 14-hour shifts as a delivery driver, so she was left at home alone with the children every day.

“I knew that this was not right,” says Soña. “Mary was only about nine months old, and I was starting to have major back problems and spasms.

“I was having constant accidents – I would fall several times a day and get slammed against the door or the wall. I dropped Mary a number of times, which was very scary.”

Struggling on alone

Soña tried again and again to explain why she needed support, but was repeatedly ignored. One professional suggested that if Soña couldn’t cope, Adam should give up work and become her unpaid carer.

“There was no compassion whatsoever. You’re made to feel like you’re making something up. Why would you make it up?

“I felt very vulnerable, here by myself. I was really upset and stressed. All I wanted was to be able to take my children outside, but I was basically trapped in my own house.”

After months of frustration, Soña called Scope’s helpline and spoke to one of our advisors. Realising it was a complex case, the advisor referred her to Karin, a regional response worker.

“I was quite desperate by then,” Soña says. “My situation was getting worse, and I felt like no one wanted to help me.”

Taking control

Karin came to visit Soña at her home and they talked through what had happened. She drafted letters, contacted experts to ask for legal advice, and accompanied Soña to meetings with the authority.

Two women having a conversation on a sofa
Karin, a regional response worker from Scope, with Soña

“We worked together very closely. Karin was always there to help, or to find someone to help me. She constantly reassured me I was doing okay.

“It kept me going, basically. Everyone kept shutting me down, and I was feeling like: maybe I don’t deserve this. To know there is someone out there who actually does support you made a big difference.”

When Soña finally decided to take legal action, Karin helped her apply for legal aid. Soña found a solicitor to argue her case.

“It took six months, but the outcome was absolutely mind-boggling,” she says. “I ended up getting 30 hours’ worth of support a week, far more than before. I couldn’t believe it. I’d been told for so long that I didn’t need anything.

Sona and Mary with Dor, their support worker
Sona and Mary with Dor, their support worker

“Now my carer comes for six hours a day to help me get the girls ready for nursery. We can go out and do the shopping, or take Mary to an appointment. I don’t feel like I’m a prisoner in my own home.

“Without Karin, I would still be stuck at home by myself, struggling. You need support when you’re in this situation, you can’t do it alone.

“I was made to feel like getting social care was a privilege, but it’s not. I need it just so I can have a life.”

If you’ve had a similar experience with social care, you can make a difference by sharing your story as part of our 100 Days, 100 Stories campaign. Please contact us on  stories@scope.org.uk if you’d like to get involved.