SWAN UK (syndromes without a name) estimate that 6,000 children with undiagnosed genetic conditions are born every year. Today’s Undiagnosed Children’s Day has a mystery theme to highlight the fact that many undiagnosed children are medical mysteries. They’ve also created this fun video for the day:
Last month, Lauren Roberts from SWAN UK wrote a blog for us about the practical reasons why a diagnosis can be so important – Why do you want to label your child? We had a big response online to the blog, with many people agreeing with Lauren that without a diagnosis getting the right support is incredibly hard:
“If you don’t get a diagnosis your children don’t get the help they desperately need or deserve from the medical profession.” – Pam
“My daughter is a SWAN and hardly gets any help what so ever, anything that could actually help her that costs money she’s not considered for using her non diagnosis as a ‘one day she might’.” – Kathleen
“From experience I know this is extremely difficult and no offers were made before diagnosis, only after.” – Andrea
This year marks 20 years since we changed our name to Scope.
As we look back at the last 20 years, how do you think things have changed for disabled people? Have things got better or worse?
Here’s what you’ve told us so far. Let us know what you think in the comments below.
“Better in many ways but the ignorance continues unfortunately and now backed by the government with it’s war on scroungers, we are people, we contribute towards society” – Bobbi
“I think things have got better in some ways but if you have a disabled people it is hard to get work.” – Jodie
“Things got better and now they’re going the other way. Very very sad times.” – Tina
“Things have improved a little in my 50 years of CP but, not much. Still having to fight for everything, benefits, adaptions, equipment.”- Donna
“I’ve just adopted a beautiful 14 month little girl who has CP and even at this young age I’m shocked at the lack of facilities – doors too narrow, badly designed high chairs in all restaurants, no suitable play equipment in parks. If this is an improvement, god knows what it was like before.” – Lesley
“I think things are much better now, yes welfare reform has had an impact the past few years but overall I feel like the situation has improved markedly especially the last 3 years.” – Michael
“There’s more medical knowledge and laws have been passed to make public places accessible to all regardless of physical condition, so that’s positive.” – Tre
“Better than it was, but still got a long way to go.” – Karl
Guest post from Jo, who is creating a book with her daughter Jess.
Jess is such a special person, I know I am her mum, but she has the ability to make people smile and just wants to help others. She has changed everyone’s life in the family for the better. Jess has learning and physical disabilities and I feel very humble to be her mum and have watched her cope with many situations over the years.
She is the inspiration for a lot of things in my life. I have always wanted to put pen to paper about Jess’s life and never known where to start. Rather than writing about the constant battles with the authorities (the never ending red tape, the moving goal posts), I thought that there must be a better way to tell people about this incredible young lady.
The Goth Fairy
Whilst I was looking at some of the cartoons that Jess had drawn, the idea came to me (one of my very few brain waves!) – a fairy.
Jess loved the idea. So we put our heads together and came up with “The Goth Fairy”.
Jess just wants to be treated the same as everybody else. She wanted to put across her feelings about what happens to her, such as being stared at or not being able to do things that most people can. We hope people who will read the book will realise that it OK to be disabled and it OK to be different.
Jess the Goth Fairy has learning and physical disabilities, just like the real Jess. Wings that don’t work very well, so flying is scary and landing is a nightmare! She looks different, doesn’t do pink or wear dresses. Having a normal life as a fairy is very challenging for her.
Unfortunately we can’t create this book for free. The book needs illustrating, proofreading, copy-editing, marketing and much more, so we started a Kickstarter campaign to fund the estimated £6,000 we need. Thanks to some incredible support – we’re almost there!
Jess would like to take the book into schools, colleges, and disabled organisations to read the book to anyone who would like to hear and talk to her about her life. I’m happy to support her but I hope somebody, such as her care provider, will also support Jess to do this on her own.
I know life will never be easy for Jess and things will probably get harder as she grows older. The thought that her dad and I won’t always be about to protect her fills me with fear. The last two years I have had ill health and been diagnosed with ME, and I have experienced in a very minor way, the prejudices that Jess goes through.
We hope the book will teach people about life with a disability. We want to show that though very hard at times, with the correct support, someone like Jess can achieve a lot and give so much to the community they live in!
Guest post from Conrad Tokarczyk. Conrad and double Paralympic gold Medallist Natasha Baker MBE are both from Hillingdon in London. Natasha is supporting Conrad’s campaign to make all their local tube and train stations accessible to disabled people within five years.
In the aftermath of London’s 2012 Paralympics, awareness of disability issues is supposedly on the rise. But access to public transport still remains a major obstacle for disabled people. The effect this has on people’s lives is not being taken seriously.
The term “public transport” by definition suggests that it is a service for everyone. But as many people reading this will know, many stations have large flights of stairs leading to the platform and no lift. This makes it impossible for wheelchair users and people with mobility issues to get around.
In my home borough of Hillingdon in London the majority of tube and train stations are inaccessible to wheelchair users like me, so I’ve launched a petition calling on decision makers to improve access.
Why it it such a big problem?
I’ve had to turn down certain jobs which I couldn’t get to using public transport. And it’s not just about work. Many people miss medical appointments, trips out with friends, and have difficulty getting to college – all the normal everyday things they want to do.
Driving is sometimes an option. I drive, and I have a Blue Badge, which should help with parking. But in London journey times can be nightmarish, twice as long as public transport, and parking in central London is difficult and expensive. Taxi rides are also incredibly costly.
Many generations of disabled people have been prevented from leading fulfilling and independent lives as a consequence of poor access to public transport. Politicians need to take action now to improve the accessibility of our transport network. If they continue to dither on the issue, yet another generation of young disabled people like me will miss out.
Where will the money come from?
Politicians often cite a lack of funds as the reason improvements can’t be made, which is why our petition is also asking decision makers to publish the costs of making the UK transport network accessible.
In January this year politicians spent £250,000 on portraits of themselves; last year MP’s spent £13,000 refurbishing the House of Commons Strangers bar; and in 2012, politicians spent £400,000 of taxpayers’ money renting dozens of trees to decorate their offices! I think it’s unfair that the purse strings are tighter when it comes to spending on issues that could improve the lives of disabled people.
If, like me, these acts of self indulgence make your blood boil, please take a moment to sign the petition calling for decision makers to take the views of disabled people seriously.
We run workshops which cover all the basics in addressing sleep problems and provide a toolkit to address your child’s sleep problems. Our workshops are for 10 professionals and 10 parents. If you’re interested in booking, email email@example.com.
Tips for tackling sleep problems
I hope you can join us for one of our training sessions. In the meantime, here are some of my tips you might like to try for dealing with sleep problems:
Certain foods can help at bedtime – 1 hour before bed – like bananas and warm milk. Food and drinks with colouring or sweeteners can affect a child’s ability to settle at bedtime.
Some children use bedtime as an attention seeking exercise, attention, good or bad, is all attention to a child. Children are clever, and find some amazing distraction techniques to avoid going to bed.
Some children are lacking a routine at night time or haven’t learnt appropriate behaviour at bedtime. Visual clues and consistency are key for all children. Children with learning difficulties may not understand why or when they need to go to sleep.
Addressing sleep problems is exhausting for all the family, but given time, patience, and support they are many approaches that will help.
Older children and teenagers naturally experience a shift in their body clock, meaning they want to go to sleep later and get up later. Modern technology impacts on this even further.
Many disabled children need moving and repositioning in the night, if you do this near the time of one of their natural night wakings they are more likely to wake up. You need to work out when they are in a deep sleep so if you do it then they are less likely to wake.
If your child suffers with anxiety, the physical symptoms of anxiety will impact on their sleep. Try doing anxiety exercises at the beginning of your bedtime routine.
Many people think sleep problems are linked to a child’s impairment. This is not always the case – there are many causes of sleep problems which need to be explored.
Research has shown that using a behavioural programme to address sleep disorders can help almost all children. However it can take longer to see improvements if a child has a neurological condition.
The reaction to this Sunday’s Call The Midwife has been overwhelming!
The episode features my character Jacob, who lives in an institution for disabled people. We learn about his relationship with another resident, Sally Harper, who has Down’s Syndrome. The story follows their struggle to be together as everyone around them rejects their right to be in love.
The media has described the episode as the most controversial story line yet. For me it’s highlighted an aspect of our social history that has not had the recognition it deserves: disabled people in love.
My character Jacob first appeared in series two of Call The Midwife. Living in St Gideon’s institution, he symbolised the segregation of disabled people in post-war Britain.
In the episode a couple need to decide if their child with spina-bifida should be put into St Gideon’s. Jacob steers them towards bringing their child up in the community with the line: “there’s a biscuit factory next door… we get the broken ones”.
Viewed by over 10 million people, people praised the show for using a disabled actor.
When we meet Jacob again in today’s episode he’s a responsible young man, contributing to the running of St Gideon’s.
How things have changed
Lots of the media attention has been on my own love life. I’ve always tried to be as independent as possible, with support to enable me to achieve this. I believe that dating should be an ordinary part of my independence.
People aren’t as shocked at this as they were back in the 1950s. To see disabled people in a relationship isn’t the taboo it used to be. But it’s still difficult for disabled people to date.
Inaccessible venues, pressures to conform to stereotypes, and people’s attitudes all make dating challenging.
Changing attitudes towards disabled actors
I believe the courage shown by Call The Midwife will encourage writers and agents to include disabled people in their programmes. I hope we will see more disabled people in ordinary roles, where the focus is on their inclusion as equal members of the cast.
It was incredible to get my first professional acting role on such a popular drama. Playing the role of Jacob has been an amazing honour, but the best part has been the acceptance as an actor by the cast and crew. During the filming I felt like one of the family – chatting with Miranda in make-up, Helen and Bryony between scenes, and sharing banter with the sound crew. It gave me the sense of being an actor in my own right.
Guest post from Elle Jepson, a photography student at Middlesex University in London.
I think it’s very important to capture people with disabilities and mental health issues in a way that shows it’s only a small part of them, not entirely who they are.
Having had two profoundly autistic brothers and a best friend with schizophrenia means I’ve often battled with prejudice. When I was younger, just being related to two people as profoundly disabled as my brothers, was enough to be belittled and mocked – and I wasn’t even the person dealing with the disability.
These experiences have shown me that people have such a set idea of what it means to be disabled, influenced by what they see in the media and in things like art and photography.
My new project is called ‘Identity’, and it’s about how people are boxed into a stereotype once people have found out a person has a disability, and my aim is to take pictures where you can’t tell if the person in the pictures is disabled or not because it’s not about that, it’s about who the person is aside from that.
Basically my aim is to show in portraits that there is more to a person than what they may be diagnosed as, if that makes sense. I feel this project is one way I can help change the bias surrounding disability.
Back in October we announced that Netbuddy was joining Scope. We’ve spent the last few months talking to members of the Netbuddy and Scope communities about what they’d like to see on the new joint community. We’ve done this through an online survey, emails, phone calls, Skype and face to face interviews.
Here are the common things people told us they wanted from the online community:
People spoke about the desire to connect with people in a similar situation, in a variety of different and changing ways. Some people came to the sites looking for emotional support, for others it was about getting practical advice – but the common need was to find people “like them”. We want the new community to help people make these connections.
The ability to help others
It’s not all about receiving support – people also had a strong and genuine desire to help others through their contributions online. We want to make it easy for people to ask for and give help by letting people discover areas of expertise, find people who need support and enable people to acknowledge when content has been useful.
Immediacy and timeliness
With sites like Twitter and Facebook, immediacy has become the norm.
The people we spoke to expected immediate responses when they posted online so an online community can’t just run 9am – 5pm, only on weekdays! People expect their posts to be sent out immediately and be notified if anyone responds straight away. We will need to make sure people can access advice from the community whatever the time or the day.
People felt strongly about the need to belong to the community. This might mean that staff will occasionally need to take a step back, and give people in the community more control over how it’s run and how it develops. Doing this research and involving people from the community in the process is the first way we’re doing this, and we will involve the community in anyway we can as we progress.
Users of the Netbuddy site told us how much they valued the site champions and experts, so we hope to continue these roles and grow the number of champions supporting people to use the community.
A safe and trusted space
Whilst people wanted ownership and immediacy, they also wanted to be able to use the community to suit their personal situation. This might mean discussing sensitive personal issues, not suitable for sites like Facebook, without fear of abuse or prejudice.
We’ll work closely with the community, champions, experts, and staff to make the community as safe, welcoming and friendly as possible.
Thank you to everyone who has taken part in the research so far. We’ve learnt so much over the last few months and we will continue going through all the feedback as we build the new community.
We’ll be posting more updates here on the blog and we’ll share any opportunities to get involved. Our focus for the coming months will be on building and moving across the forums from Scope and Netbuddy onto the new Scope community. If you are part of the community – we will be in touch. Later in the year we plan to start moving the tips and events content into the new community.
Thanks also to Sam Menter and Ant Mace for conducting the research with us and providing their fantastic insight and expertise.
The Undateables is back for a third series. We asked on Twitter and Facebook what you thought of the show and here’s what you told us:
You really don’t like the title
“Why call this programme by this horrible title? Doesn’t this just perpetuate stigma?” – Pauline
“Can’t stand this show. Yes it shows that as disabled people date etc. but the title is an automatic barrier. Why are we UNdateable?” – Stixie
“Wish it was called something less awful.” – Davida
“I am really offended by the title.” – Christine
“I’ll be watching! The title is dreadful but the programme is really good at understanding disability.” – Elizabeth
Many of you enjoy watching the show
“I love the show. As a mother of a severely disabled little girl it gives a lovely insight to adult life of disabled people. People who take the mickey are just ignorant. I will be tuning in to watch every week” – Tanya
“The programme shows that the people on it are just people with feelings looking for love, like the next person” – Julie
“It’s actually an ironic title. A friend of mine was trying to get on to the programme. It’s seen through able bodied – so hence the title. But it turns out that they are not undateable but very pleasant people.” – Steve
“As a lesbian woman with diplegia and spastic cerebral palsy who is married with step children, I celebrate this program as it forces people who would be uncomfortable around disabled people to see just how ordinary we are in our need as any able bodied person.” – Tre
“I’m really looking forward to watching it. If you’re going to watch it with a closed mind, chances are, the program won’t change that – it’ll need much more than one show to make that much of a change.” – Faye
“Love this series. Good to see people’s personalities coming to the fore rather than their conditions.” – Heidi
But many worry that disabled people are being used for entertainment
“So many people sitting in their homes tonight will be taking the piss or passing their negative comments . Why is it so shocking that people with disabilities want to find love?” – Christine
“I love this program but I’m getting so fed up with lots of people taking the mickey out of them all!” – Sheenagh
“Personally I think it paints a bad viewpoint of disabled people, and I am disabled, so I have an idea.” – Shau
“Hate the title, hate the idea. Disabled people are not frickin entertainment.” – Shohna
“I also feel a small degree of shame and anger. Segregating disabled people from other dating shows and creating a special show angers me but I can’t quiet articulate how. It’s like deep down I’m feeling this anger because the show almost makes it look like while disabled people are great – it takes a special person to see past that an love them, when that’s not the truth.” – Tre
It’s not perfect, but it’s a good start
“The show has a long way to go, but maybe it’s a start. Having spoken to the creators on the phone, I realise they have a set agenda…” – Downs Side Up
“I think we have to start somewhere. Disability issues are so far off the mark and ignorance is the only reason for this.” – Emma
Let us know what you think in the comments section below.
Guest post from Ian Ray. Ian is editorial manager at The Children’s Trust, the UK’s leading charity for children with brain injury. He leads the Brain Injury Hub, an online resource and forum for families of children with brain injury.
How do you tell your child they may not be quite the same again?
Thousands of parents across the UK face this very problem each year after their child sustains an acquired brain injury.
It’s hard to overstate how shocking this can be for a family, as their otherwise healthy little boy or girl is hospitalised through an impact to the head, or a ‘non-traumatic’ injury such as stroke or meningitis. This shockwave may rumble on for many years afterwards, as children and families contend with a huge range of issues and impairments (it would take another handful of blogs to cover them all!).
Just one of these issues is the difficulty some children have with their own awareness about their injury and its effects. This makes a lot of sense when you think about it, in that the very organ children use to make sense of themselves may not be at full strength.
On the face of it, this lack of awareness might seem a blessing, but actually, it may be hard for children to address their difficulties if they don’t understand them. They may push themselves too hard, or miss mistakes they’re making.
Heads Up, Tim-Tron
With Heads Up, Tim-Tron, we’ve tried to help parents of younger children broach this complex issue in a colourful and interesting way. It’s a picture book about a little robot who bangs his head, an idea that came about after one of our clinicians compared the human brain to a cluster of tiny working circuits.
We know boys are disproportionately affected by traumatic brain injury, and a comparison with the circuits in a little robot’s brain seemed like a funny way to appeal to them (hopefully without excluding little girls!).
The more we thought it through, the more aspects of brain injury seemed ripe for the robot treatment; the tiredness children experience after an injury might be rendered as a battery running low, or the difficulty some children have absorbing information might be trouble with a processor.
After working up the story from home, I nervously took my first draft to a writing tutor, who helped me get the book in better shape. He suggested I put together some guide illustrations to ‘storyboard’ the book, which was enormous fun.
As the story developed, it became increasingly important that we didn’t have a big, shiny happy ending. Sadly, we know rehabilitation can sometimes be an ongoing process for children, so it was important that our story ended on a cautiously optimistic note. I hope we’ve achieved this.
When I had something that looked like a (somewhat amateurish) children’s book, our own experts made sure it ‘did its job’ from a clinical perspective. We also shared the draft with some of our families, who weren’t shy about telling us it was far too long.
Illustrating the book
Our director of fundraising was able to have the project charitably-funded, and we were now ready to take on an illustrator for the book. This was far and away the most exciting aspect of the project, as I trawled through illustration directories looking at every conceivable style of children’s artwork.
We eventually chose Garry Parsons, an award-winning artist who hand-paints each page of his books. With his expert eye, Garry saw immediately that my version of Tim-Tron was too adult-like for young children, so he put together a collection of little robot drawings we could show to children to see who their favourites were.
With our main character designed, Garry developed initial ‘thumbnail’ sketches that soon became a pencil storyboard for the entire book. This itself then blossomed into a series of vivid paintings telling Tim-Tron’s story.
Richard Hammond lends his support
Over the last few years The Children’s Trust has benefited from the support of Richard Hammond, the Top Gear presenter who himself sustained a brain injury during filming. Despite a manic calendar of filming and appearances, Richard took the time to record an audiobook version of Heads Up, Tim-Tron for families to read along with.
With the audiobook recorded, our production process was almost complete, and after a couple of insomnia-inducing slip-ups in our schedule, we got the book to our printer.
Getting the final product back in a series of neat little boxes was a genuine thrill. And shortly afterwards, we were told the United Kingdom Brain Injury Forum had awarded us their “Innovation in the Field of Brain Injury” award for the project, a wonderful recognition of the hard work of our little team.
All we need to do now is get the book into your hands. I’m already proud of our little robot, and I hope his story will be genuinely useful to children, their friends, siblings and families.