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International Dravet Syndrome Awareness Day 2015

2015 Dravet Syndrome Awareness Day Logo

2015 Dravet Syndrome Awareness Day Logo

Dravet Syndrome Awareness Day 2015

This year International Dravet Day is celebrated on 23rd June 2015, and it has a special significance at Trabasack HQ as the son of Duncan and Clare, the creators and founders of Trabasack, lives with the condition. International Dravet Day is a chance to raise awareness and this year, the charity Dravet Syndrome UK are suggesting we ‘take a break’.

The charity are suggesting that 23rd June should be the day where we all take the time out to enjoy a cake and a cup of tea to help raise awareness for the condition and to help raise funds and support the work the charity is doing to fund research and further awareness of the rare syndrome. They are giving people the chance to put together their own fundraising events in awareness and you may be able to find one near you. If you’re interested in finding out more they are offering special International Dravet Syndrome Awareness Day fundraising packs via linzi.c@dravet.org.uk. This is only the second time 23rd June has been recognised at Dravet Syndrome Awareness Day so it’s a real opportunity to

Dravet Syndrome and Trabasack

Joe at 4 with one of the first Trabasack lap trays

Joe at 4 with one of the first Trabasack lap trays

Our first Trabasacks were created for Joe and because of Joe. Joe was diagnosed with Dravet Syndrome as well as a SCN1a deletion, linked to the condition, where he was just four. He is non-verbal and has support with most daily tasks and to support Joe, the Trabasack team always ensure they attend the Dravet Conference and are aware of any new treatments and research into the condition.

Joe is now 11 and still using his trabasack every day

Joe is now 11 and still using his trabasack every day

 

 

 

Joe has always had seizures and this has meant that traditional buggy and wheelchair tray designs were simply too dangerous for him and therefore his parents needed a solution that was more lightweight and easy to remove, giving him the space needed when having a seizure. His mum Clare began designing and soon a soft beanbag cushion with a tray on top had come together and Joe was able to access his toys and games. The design worked perfectly and was developed further to include a Velcro receptive top to keep things in place. The tray was designed to fit closely to Joe’s body, meaning he could play his arms comfortably on top of the tray and this original idea was refined and reworked to create the Trabasack, a retail product which thousands of people use in all sorts of ways.

2015 DSUK Conference

Dravet Syndrome UK Conference 2015

Dravet Syndrome UK Conference 2015

This year’s DSUK Conference is in November and as the only Dravet Syndrome specific conference in the UK it is of high importance to the family behind Trabasack, as well as many other people across the UK. The conference is designed to provide information, innovation and support and where possible answer questions that parents, carers and professionals may have. On 7th November the conference is holding its Family Day where a panel of internationally renowned experts will be attending to discuss the latest innovations and research in the field. Family Day also features a disco, buffet and the opportunity to network and connect with others.

Speaker at Dravet Syndrome UK Conference 2012

Speaker at Dravet Syndrome UK Conference 2012

The Professional Conference takes place the day before the Family Day where a wide range of professionals involved in working with people with Dravet Syndrome, including teachers, GPs, nurses and neurologists have the chance to learn more about the condition and crucially the challenges involved.

In 2012 the Duncan from Trabasack attended the Dravet Conference in Warrington and got together a wide range of notes and information in tweet form, fantastic for looking back on when this year’s conference comes around. This Storify feed is an amalgamation of all the notes together in one place to get a good feel for what happened back in 2012, in preparation for 2015.

The DSUK Professional and Family Conference in November is being held at Tower Hotel, St Katherine’s Way, London.

New Research for DSUK in 2015

Professor Sisodiya - leading up a new research project into Dravet Syndrome this year

Professor Sisodiya – leading up a new research project into Dravet Syndrome this year

Alongside announcing their fundraising plans for International Dravet Syndrome Day, as well as the Conference at the end of the year, the team at DSUK have delightedly announced a new research project for 2015.

This new ground-breaking research project will be undertaken by Professor Sanjay Sisodiya and his team at University College Hospital London. It is looking at ‘Genetic influences on cognitive function in Dravet Syndrome’ and has received grant funding from DSUK who believe it could make a huge different to how we understand the condition.

Raising Awareness for Dravet Syndrome

With all of the above happening to focus on Dravet Syndrome happening in 2015 it is a year where real focus and awareness can be raised. It is an extremely rare condition which is believed to occur in between 1 of 20,000 and 1 of 40,000 births. Children with Dravet Syndrome are at a higher risk of sudden unexplained death in epilepsy than children with other forms of epilepsy. Despite this, Dravet Syndrome UK statistics suggest that children have an 85% of surviving into adulthood and this has meant a need for more adult specialists in the condition.

There are a wide range of different treatments for Dravet Syndrome that range of antiepileptic medications to diet plans, specifically the ketogenic diet which has found to have a positive impact for some individuals. More treatments are regularly being researched and tested to give people living with Dravet Syndrome the best possible quality of life.

It’s no surprise that Dravet Syndrome awareness is close to the hearts of the Trabasack team and we will continue to provide relevant updates, event notifications and awareness day announcements as they occur.

Visitors to this site can access a special bundle offer for trabasack at this link

http://sensoryplaytray.com/product/curve-connect/

Gripping Aids for Children

Active Hands Mini Gripping Aids

Active Hands Mini Gripping Aids

Helping Children Grip to Play and Learn

We like to highlight products that we find that can help children play and explore new sensations. Active Hands now make smaller gripping gloves that are for children:

There are many children who live with medical conditions which affect their hands and grip. Conditions from Spina Bifida to Cerebral Palsy and Guillain-Barre Syndrome to Muscular Dystrophy can make gripping and holding things difficult but thanks to Active Hands, there is no need for these children to miss out.

Weak hand function or difficulty gripping can make many daily tasks difficult as well as limit access to many games and activities. Active Hands Mini Gripping Aids have been developed to remove these limits and give many children access to games and activities they may previously have struggled with.

What are Active Hands Gripping Aids?

Active Hands Mini Gripping Aids in Action

Active Hands Mini Gripping Aids in Action

Active Hands Mini Gripping Aids are glove-like accessories which can be worn and attached to a range of items, allowing the hands to be held in place and allowing for items to be gripped and held. This could be anything from a drinking cup to the handlebars of an adaptive tricycle.

Active Hands Gripping Aids are designed to last and made from a soft yet durable neoprene webbing material. They can be popped in the wash if kids being kids, they get a little dirty and the mini size gripping aids are designed for children aged up to five. For older children the General Purpose Gripping Aids come in three sizes and the company recommend the smallest size should be perfect for children aged 5-10.

The Mini Aids are available in Blue or Pink to suit the preferences of your child and can be used for a wide range of play activities.

Using Active Hands Gripping Aids

There are many ways that kids can get the most from their Active Hands Mini Gripping Aids and this video shows just how fantastic they can be when using an adaptive bike:

They are also great for enjoying ride-on toys, outdoor activities and for more therapeutic purposes such as physiotherapy and exercise sessions. They can help children who need to exercise to strengthen their muscles grip comfortably as they are working.

The aids hold the hand or hands gently but firmly in gripping stance, making it possible to grip all manner of toys, handles and therapy equipment.

Active Hands Happy Customers

The Active Hands Company has many happy customers, including many parents, children and carers and below is just a closer look at some of the fantastic feedback they’ve had:

“Thank you so much for your help and assistance. This product is a life-saver for my daughter.”

Debbi Moore

“My grandson has a genetic disorder generally referred to as Micro Cephaly with symptoms similar to cerebral palsy.  He cannot speak, sit up, walk or control arms but is such a warm hearted little guy who loves to ride an adaptive bike.  For some reason, his little legs work on the pedals!

When he first started riding the bike, there was no way to control his arms and hands… I came across your website one night after a pretty extensive search.

Well they work as well as I could have hoped. His movement is much more controlled, he is stronger at pedaling (which is great exercise for him).  The teachers in his school, his parents, and of course myself could not be happier.  Thank you!!”

Bob Majkrzak

“I am a big fan of Active Hands and every one of my clients that has grip issues has been shown how effective Active Hands are. They are quite simply the best tetra gloves on the market and I am very happy to recommend active hands to my clients at Prime Physio.  I am a big fan and meet people throughout the country and occasionally in Europe, I always recommend Active Hands. Active Hands can be applied easily and adapted to so many exercises, I think they are a great bit of kit.”

Andy Galbraith

MCSP MLACP, Physiotherapist, Prime Physio Specialist Therapy Centre

Mini Gripping Aids for One Hand or Two

Playing with Active Hands Mini Gripping Aids

Playing with Active Hands Mini Gripping Aids

Active Hands Mini Gripping Aids are sold in single packs but many children use two to ride bikes and trikes and other toys. In some instances only one will be needed but it’s up to the individual parent, carer or therapist to decide which is best for each child.

Active Hands Gripping Aids really can change someone’s life and ensure any physical disabilities are not a barrier to enjoying the same fun, toys and entertainment as other children.

 

Active Hands products are available through Amazon – click the images below for more info:

Sensory Stories for Children and Teens – The Book!

Sensory Stories: A Practical Guide

Sensory Stories: A Practical Guide

Launch of New book: how to create your own sensory stories for children and teens with special educational needs

We’re really pleased to share the fantastic news that Joanna Grace, who we have worked with on several occasions and backed her Kickstarter campaign last year, has a book out very soon! Joanna is the name behind The Sensory Story Project and has done fantastic work for many years developing her project and her works for a wide range of people with profound and multiple learning difficulties.

We have talked about Sensory Stories in depth previously but couldn’t resist the opportunity to show off how amazing they are once again, especially as this book is due out in just a few days.

Sensory Stories Kickstarter

Back in May 2013, The Sensory Story Project successfully funded their Kickstarter campaign, gaining over £5,000 in funding. This money was put towards the development of a range of sensory stories that could be adapted and used in different environments for different disabled adults and children. The Kickstarter was a huge success and allowed Joanna to continue her work and keep writing and developing the stories which have provided so much for so many people.

We love that sensory stories are a fun, social way of enjoying storytelling that can be enjoyed by the whole family or classroom and that, if used with a bit of knowhow, can open up communication for people with profound disabilities. Joanna recommends sharing the stories on a one to one basis for people with profound and multiple learning disabilities, and adds how well the stories are suited to being presented on a Trabasack.

The Sensory Story Project: The Book

The Sensory Stories for Children and Teens with Special Educational Needs: A Practical Guide book has been designed as a practical guide and is to be published by Jessica Kingsley Publishers on the 28th of October (Amazon are currently open for advanced orders). The book begins with a simple explanation of what sensory stories are and expands considerably on this point, providing an indispensable guide for practitioners. Joanna provides an overview of the research backing for the stories, looking at the importance of sensory stimulation and narrative for cognitive development and inclusion.  There are chapters on how the stories can be used to support individuals with a wide range of needs, including those with Profound and Multiple Learning Disabilities, Sensory Processing Disorder, Autistic Spectrum Disorder, Learning Disabilities, Communication difficulties, Memory problems, physical impairments and mental health difficulties. Joanna gives clear guidance on how to tell the stories to maximise their benefits for your story experiencer and gives useful ways to record progress and achievement. And of course the book has five new stories in it which should suit a range of interests and ages. Each story is supported with six lesson plans for schools who want to use the stories to facilitate learning, or for people to dip into if they want to do activities following on from sharing a story.

Sensory stories require imagination and are designed to delight the senses in a simple and effective way, as this example shows:

 

Rave Reviews already published

Although the book won’t be hitting the book shop shelves for a week or two, a few lucky folk have had the chance to take a sneak peak and positive reviews are already out there.

Flo Longhorn (Principal Consultant in Multisensory & special education author, great grandmother and beekeeper, and fellow backer of The Sensory Story Project) provided the forward for the book, saying in it: “This book tells a sensory story. It is for the seeker of sensory knowledge, looking for substantial ideas with which to plunge into new worlds of sensory story telling. Each chapter offers a wealth of ideas and knowledge including themes and ideas that could be placed at the core of a curriculum for special learners.”

James Gordon, an autism advocate and parent, has described the book as ‘vital reading for every special needs parent and teacher’. Gill Warren, the English coordinator at Sir Charles Parsons School, which provides care and education for pupils with severe learning difficulties and associated physical disabilities described it as ‘Take a pinch of glitter, a peck of spice, a splash of water, pebbles, a torch and noise makers; add the guiding spell of this book and we are ready. Through inspirational ideas, clearly and simply explained, Jo shows how everyone, including those with the most profound needs, can share and learn through the deep magic of stories. I wish this book had been around years ago when I first began teaching students with profound learning difficulties.’

With reviews so positive already published, we’re sure this book will have a profound influence on the wider special educational needs community.

Sensory Stories and Trabasack

Trabasack Sensory Stories

Sensory Story & Trabasack

We have worked with Joanna on several occasions and had the opportunity to hear all about how effective Sensory Stories can be.  As mentioned above sensory stories are best delivered one on one allowing the individual enjoying the story to interact and get involved with the story on their own terms. The picture above shows the Princess Esme story (one of the ones we backed the creation of) being told on a Trabasack – a perfect fit!

We are really looking forward to reading and using the book with our son Joe Sensory Stories for Children and Teens with Special Educational Needs: A Practical Guide’ and are sure it will be a big success.

 

Personal Message from Joanna

I am so excited that this book is being published. The initial aim of the Sensory Story Project was to create five stories. Without the project backers these stories could never have been created. When I finally finished them I wrote to all the backers liking their donation of funds to the project to a penny thrown in a wishing well. The project backers are an amazing group of people and organisation and I think we all have the same hopes and wishes for inclusion. I wondered in that message where the ripples from those coins might spread, and over the past year I’ve been staggered to find out just how far they roll. The Sensory Story Project has enabled so many people to be trained in how to use sensory stories, from Early Years Practitioners to people working in Adult Care. Sensory Stories to support postural care have been created and are being used as far away as Hong Kong. Practitioners from around the globe, most recently Portugal and New Zealand have been in touch to get support and advice for the people they support. In the summer Kensington Palace commissioned The Sensory Story Project to create a sensory tour of the King’s State Apartments, opening up the palace for people with learning disabilities, dementia and mental health difficulties. The Sensory Story Project has also been working with people who specialise in dementia care to create sensory life stories for people as they begin their journey into dementia. I couldn’t pick a favourite thing that’s happened since the launch, every day I wake up delighted that this is what I get to do. Certainly some of the most moving moments have been hearing feedback from people who have used the stories and opened up communication with individuals with profound disabilities. Next year I’ll be delivering training around the UK, I’m looking forward to each date. Sharing the stage with Flo Longhorn and Richard Hirstwood will be real pinch me moments for me, and in August I’m doing a whole weekend at a residential retreat centre, fabulously the Quakers are subsidising this course so that delegates will be able to have their bed and breakfast paid for and attend the whole course for a little over £200 I’m hoping that a real mix of people will attend, I might even bring my new little assistant – he’s proving very useful assessing what makes a high quality sight experience.

Joanna Grace's baby boy and her stories

Joanna has lots more information and many free resources at her website http://jo.element42.org/ Highly recommended!

How to make your own Sensory Wall

A Sensory Area in Your Home

 

Board with locks and latches for a child to play with

Sensory walls can be very different depending on the likes and dislikes of your child

It’s the dream of many parents with children living with a range of disabilities to create a whole sensory room. A separate area where sensory play and fun can be enjoyed without interruption. This isn’t always possible but building your own sensory wall can be much simpler and it can be affixed to the regular wall of a bedroom to add an extra interactive fun element to any child’s room.

The importance of sensory play and stimulation cannot be disputed. It can be a valuable way of helping children with disabilities connect with their environments and learn in a way that suits their physical and emotional capabilities. There are many different ways of building a sensory wall so this is just our example. Our previous post looked at creating a sensory cube, now let’s look at making a sensory wall.

The wall can be specific to your child, like this board for children who love locks and door latches!

Making your Sensory Wall

You will need:

  • A large wooden board/piece of MDF to cover the wall area you’re planning to make
  • Cable clips or similar for securing hard to hold items
  • Plastic chains
  • Reflectors
  • Carpet and Wallpaper swatches and scraps
  • A mirror
  • A pushable light
  • Locks of different types (chain lock/slide lock)
  • Tissue paper and foil (for scrunching and crunching)
  • Fibre optic cables
  • Squeaky Balls/Toys
  • A curtain pole, fixtures and fittings & dark curtain

One you’ve laid out all your items you can spread them equally over the board and secure them in place. Items such as the squeaky toys can be nailed onto the board so they can still be pressed and made a noise and the tissue paper and foil can be placed in a nailed or glued plastic envelope so they can be easily replaced.

 

 

The curtain rail and dark curtain are provided so you can affix this to the top of the board, allowing it to be covered when not in use and also to avoid overstimulation and the urge to get out of bed at night to continue playing!

This is just our suggestion and there are many more interesting and innovative ideas out there such as those shown on this Pinterest board:

 Follow Connie’s board Sensory wall on Pinterest.

We also love this idea of Mother Geek who made her children a Lego Wall. The beauty of this design is that is can be extended and grow with the family!

If the space for a sensory wall isn’t available then consider making sensory books or boards that can be packed away. If your children’s room includes this sensory element alongside the other homemade sensory toys we’ve shared then you can be sure they’ll be kept busy and stimulated.

 

 

 

 

Sensory Room Video Ideas

This video from the Global Hydranencephaly Foundation shows some really great ideas to include in your child’s sensory room:

Sensory Play at Naidex National 2014

The Five Senses

It’s commonly known that we as humans have five main senses: hearing, taste, touch, sight and smell. Sensory play allows your children to explore those senses and use them as a learning tool, teaching them skills they will treasure for the rest of their lives.

Why we need Sensory Play

Homemade play dough for sensory play

Homemade play dough – ideal for sensory play. For a play dough recipe click the image

Having been proved through research to build nerve connections in the brain’s pathway, sensory play can tune your child’s fine motor skills. Picking small objects up or pouring water teaches your child to focus his or her mind on the intricate task at hand, essentially giving the brain “practice” at coping with situations which require a high level of concentration. By repeating sensory play activities, you teach the brain to remember sequences and routines, thus improving your child’s memory.

Another benefit of sensory play is that it can help develop language skills in children. Often used as a tool in helping children who have language or communication difficulties, sensory play teaches them to be descriptive in what they say; the child learns to say that something is too hot, or that it is too salty, instead of simply expressing displeasure without the means to explain. Adults and children learn best when they engage their senses, and it is impossible to teach a child to speak in descriptive terms without allowing them to experience what “bumpy” or “soft” means for themselves.

Getting bored and restless is natural in children, and can be particularly problematic in those with additional behavioural needs. By engaging the mind in sensory play you are eliminating restlessness and replacing it with a calm, controlled activity. A huge benefit in sensory play is that it suits every child’s mind, whether they academically excel or not. There is no failing at sensory play; this can be a huge boost to a child’s self-esteem.

Early Years Sensory Play Sessions at Naidex

The RNIB Pear’s Centre for Specialist Learning will be featured at Naidex National 2014, presenting Parent and Early Years Sensory sessions at stand E114. These sensory play sessions are aimed at children aged 0 to 5 who have a disability, or social and emotional needs, and will include games with light, interactive signing and sound and tactile materials, all prepared by a Qualified Teacher of the Visually Impaired.

Trabasack for Sensory Play

Trabasack Curve and Media Mount holding a sensory toy

The Trabasack team are pleased to say we’ll also be at Naidex. Our multifunctional bag and lap trays are suitable for adults and children and are great for sensory play. The Trabasack’s secure and comfortable lap tray is the ideal surface for sensory play involving small or textured items, and will be featured just a few spaces down at stand E102. We’ve discussed many of our sensory play ideas before and noted how you could include your Trabasack in play.

Naidex National 2014 is running from 29th April – 1st May 2014 at Birmingham’s NEC.

Trabasack and Sensory Play Video

This is My Child: The Trabasack Story

This is My Child: The Trabasack Story

mumsnet: new campaign logo

mumsnet: new campaign logo

Mumsnet has launched a timely and important campaign which we felt we needed to get involved with. In their own words:

This Is My Child is a myth-busting and awareness-raising campaign, launched in response to requests from our members and supported by input from some of the leading charities in the field.

This is My Child wants to support the parents of children living with additional needs and start conversation about living and coping with children with disabilities of all kinds. It’s a well-known fact that our product was launched and inspired by the parents of a child with additional needs and this campaign applies to us as many thousands of others out there.

Trabasack Inspiration: Joe

Behind the scenes at Trabasack and inspiring the invention in the first place is Joe. Joe is the son of Trabasack founders Clare and

Young boy takes part in sensory play using a Trabasack bag

Joe aged four with one of the first Trabasacks

Duncan Edwards and lives with the epileptic condition Dravet Syndrome and a SCN1a deletion which is linked to the condition. Joe received his diagnosis aged just four.

Dravet Syndrome life limiting, genetic condition that causes severe epilepsy, learning disability and global developmental delay in childhood. The seizures are usually hard to treat and do not respond well to epileptic drugs. You read more about the condition here.

Dravet Syndrome means Joe is non-verbal and needs support in most daily tasks and the condition is not one well-known across the UK and even the world. The Trabasack team always make the effort to attend the National Dravet Conference to find out more about developments in research and treatment for the condition.

Joe is a wheelchair user and through the determination of his parents, he is happy and content and always learning and experiencing new sensory things. This is helped through the use of his Trabasack, invented by his mum to make accessing toys, games and multimedia much easier.

The Invention of Trabasack

Joe (centre) was on the ketogentic diet for 5 yrs - also pictured Clare Edwards (Trabasack creator), Victor Edwards, Joe's brother

Joe (centre) was on the ketogentic diet for 5 yrs – also pictured Clare Edwards (Trabasack creator), Victor Edwards, Joe’s brother

Living with Dravet Syndrome means Joe has always had seizures and traditional buggy and wheelchair tray designs proved dangerous in the early days. Bulky and hard to remove his parents worried about him hurting himself when seizing when the tray was in place. His mum Clare then began creating.

The original design was simply a soft bean bag cushion with a tray on top so Joe could easily access his toys and games. The original design was a complete success but then the problem came of sticking things to the tray. Initially Velcro tape was used but this got dirty and messy quickly so the Trabasack team once again got their heads together and found a material which was Velcro receptive without getting filthy.

The tray developed its curved shape to fit to Joe’s body and it meant his arms could sit comfortably on top of the tray when using the toys and games. This product idea was honed and refined to create the Trabasack Curve – a product which hundreds of people living with disabilities around the world rely on.

The Trabasack can be used for many purposes, as a mount for media devices, a platform for communicative switches and simply as a handy writing surface when you’re out and about. We’re fiercely proud of our product and are pleased it’s helpful for so many people around the world and are equally proud of the boy who inspired it!

Visit other stories below:

We’re happy to share our support for the This Is My Child Campaign and would love to hear your stories too.

Congratulations Ann Maxwell Winner Tesco Charity Mum of the Year

Congratulations Ann Maxwell Has Won the Tesco Charity Mum of the Year

Dravet Syndrome Mum Wins Award

MMT Epilepsy Charity

The Muir Maxwell Trust

We’re extremely pleased to announce that Ann Maxwell, founder of the Muir Maxwell Trust, a paediatric epilepsy charity, won for the Mum of the Year Competition 2013. She will be honoured at London’s Savoy Hotel on March 3. The event will be shown on Channel 5 on Mother’s Day a week later. The Trust is named after Ann’s son Muir who lives with Dravet Syndrome and as the husband and wife team who are at the core of the Trabasack team have a son with the same condition, it is obviously an issue close to our hearts.

Ann Maxwell with son, Muir Maxwell who has dravet syndrome

Ann with son, Muir. Photo Credit: STV

Charity Mum of the Year

The Mum of the Year Award is sponsored by Tesco and looks to find the most inspirational and amazing mums out there. There are just 35 shortlisted women, after over 2000 nominations and we’re especially pleased that Ann has won as her work for childhood epilepsy raises awareness of a range of conditions that many know very little about. Ann found herself nominated as her work in fundraising has secured over £8 million in funding into further research and information about paediatric epilepsy and committed £1 million to the construction of specialist research building at the University of Edinburgh.

The Muir Maxwell Trust

The Muir Maxwell Trust (MMT) was set up when Ann’s son Muir was diagnosed with Dravet Syndrome or severe myoclonic epilepsy. The condition has meant Muir has had seizures throughout his life and this has resulted in speech and developmental difficulties too. Muir is now 15 and via the MMT website you can read Ann’s blog where lots of info and updates regarding Muir’s progress are recorded as well as tons of useful information about paediatric epilepsy and seizures.

MMT aims to provide children with epilepsy and their parents/carers with practical support and in many cases, helping to speed up what can be an extremely slow diagnosis process.

Big Congratulations Ann!

The work Ann and MMT do makes a huge difference to many families and with more than 70,000 children living with epilepsy in the UK, the work is desperately needed. All of us at Trabasack wish you biggest congratulations on winning, which is thoroughly deserved and will help raise the profile of Dravet Syndrome and severe epilepsy in children. It is fantastic news.

Dravet Syndrome Conference Young boy takes part in sensory play using a Trabasack bag

Pictured is Joe the son of the Trabasack founders who was the inspiration Trabasack and who also has Dravet Syndrome.

for people interested in Dravet Syndrome and the latest research, a recent Conference report can be found here.

Ann Awarded her Prize and featured on Channel 5

Charity mum of the year Ann Maxwell

Ann Maxwell, photo credit Channel 5

Many Dravet families proudly watched Ann looking fabulous as she received her Tesco Charity Mum of the Year award on Channel 5. As one mum said “A much deserved award and great that you took every opportunity to tell the listeners about Dravet syndrome and how it affects our children and young people. Well done and thank you!”

 

When Ann’s youngest son, Muir, was finally diagnosed with Dravet Syndrome (a rare form of epilepsy that causes profound learning difficulties, behaviour problems and severe developmental delay) she discovered there was a lack of support available. Ann, 50, from Dalkeith, Midlothian, pledged to help other families get the diagnosis and care they needed.

‘I’d spent a fair amount of time mourning the loss of the perfect child I thought I’d given birth to,’ says Ann. ‘Learning about Muir’s condition was an awakening. He began having seizures when he was four months old and I noticed his language regressing as a toddler, but the medical profession didn’t acknowledge he had special needs until he was three or four years old. After a clinical diagnosis they speculated that he had epilepsy but we didn’t get results from the genetic diagnosis (which at that point involved sending his DNA to Australia and took over two years) until he was 10. That’s late – it impacts on both treatment and prognosis.’

Read the rest of the article here.

NEW book : To Touch An Angel’s Wings

Ann has written down her experiences about Muir’s life and her journey with the family in a new book which will be published soon, called “To Touch an Angel’s Wings”.

“It’s a book about our lives, It’s called To touch an angel’s wings which is pretty much a summary of Muir. Every cloud has a silver lining. He’s affected us, his brothers and everyone he meets.”

We look forward to more news and will update this post when the book is published.

 

Flying with a Disabled Child.

Travelling with Disabled Children

Having a disabled child or children shouldn’t inhibit your family’s opportunities to holiday and get away from it all. More often than not though, people do find it difficult to travel when they have a child who is living with a disability. Whether your child is a wheelchair user or has a learning disability that is considered ‘invisible’ travelling for holiday purposes can be really difficult and in some instances seem like more trouble than its worth.

This doesn’t need to be the case and we’ve got together some tips which you should consider if planning to travel in the UK or abroad with your whole family.

Before you Travel

Before you travel there are many preparations you can make. You could consider booking your trip through an agency who specialises in disabled travel, this is an option most suitable to those travelling with wheelchair users. In most instances regular travel agencies have little or no experience of disability travel and won’t be able to think of everything. The planning stage of your trip will take a lot of research and your holiday itinerary will need to be detailed and specific. It may seem like a military operation but it will result in a smoother journey in the long run.

Before you travel you should also talk to any medical professionals involved in your children’s care. They will be able to advise to a point if they believe your child is ready for such a break and can give you specialist advice relating to their condition if needed. You can also top up on any prescription medication required.

Preparing your child is another point to consider. Every child and their condition is obviously different and only you know how your child will react. Children on the autistic spectrum for example may need a lot of notice and reminders so they are able to handle the change and enjoy the experience.

Key Considerations

You will need to consider a wide range of things which could impact on your ability to travel. Consider the assistance you may need and ensure you contact your airline or travel provider. Cover all specialised elements of your child’s condition such as dietary requirements and medications.

You will also need to think about specialist equipment you may need upon a flight and below we’re looking more closely at the MERU TravelChair and how this can revolutionise travelling with young wheelchair users.

Thinking again of medical information – you should double check the locations of the nearest emergency medical facilities from your holiday home to ensure easy access if the worst were to happen. Not knowing will only cause more panic and make the holiday much more stressful.

Depending upon the disabilities of your child or children you may need to check your travel insurance covers you all adequately. In some instances you may need to purchase specialist insurance to cover all of your child’s needs.

Meru TravelChair for Wheelchairs Users

At Trabasack, we realise the worry of booking a flight when you have a disabled child. We also like to highlight the work of others to create a more inclusive and accessible world and with that in mind, we’d like to introduce the TravelChair.

Flying with a disabled child the travelchair

TravelChair Logo

Tackling the Worry of Flying with a Disabled Child

The TravelChair is a product developed by the children’s charity MERU, who campaign and work towards improving the lives of children and young adults with disabilities by designing and producing custom-made equipment that can aid independent living and support daily activities at home, at school and in the community. The TravelChair is just one product from MERU and it’s a development which could make a huge change to air travel for children with disabilities, making it both more accessible and more enjoyable.

At present, very few children with disabilities in the UK have had the opportunity to travel abroad due to what MERU describe as ‘perceived limited options of additional support in the chair when travelling on planes’. To combat this problem, MERU have developed and created the one-of-a-kind chair for supporting children with disabilities during a flight. The TravelChair fits easily into a standard airline seat and in the past few years, MERU say it has meant over 1,000 children with severe disabilities have been able to experience the holidays of a lifetime. The TravelChair (formerly known as the AirChair) is currently available on Virgin Atlantic and Monarch Airways flights and was developed with advice and input from parents of children with disabilities, airlines themselves and also the Civil Aviation Authority.

Travel chair for flying with a child with special needs

The TravelChair installed in an airline seat

The TravelChair itself is a very lightweight and easy to carry design which fits easily into all airline seats and if you were to travel with Virgin Atlantic, the cabin crew are also trained to fit the sit for you if you need assistance. It is designed for children around three to nine and provides full postural support. Some of its main features include both waist and head support, shoulder restraints, optional pommel strap and an adjustable height leg rest. Despite being extremely robust and secure, the it is also comfortable and is designed specifically for children, providing them with the full body support they may require. Other aeroplane support options are often ‘one size fits all’ which is often unsuitable for children, being too large or small, the TravelChair is different.

It is a brilliant development that is making a huge difference to childrens’ lives and giving children with severe disabilities a chance to experience foreign travel like everybody else.

For more info about the Travelchair visit MERU website here

special chair insert for fyling with disabled children

The Travel Chair pictured at Naidex

We also have a free guide available containing information about grants, holidays and agencies for travelling with a disabled person. If you would like a copy, please sign up here and it will be sent by email.

UPDATE from OT Expert Site and NAIDEX SOUTH 2012

The Travel Chair was seen at Naidex South 2012 and Meru’s Anna-Stina was interviewed about the flight chair by the OT Expert site. The interview can be heard on the link, but an edited transcript follows:

“Meru is launching a ‘try before you fly’ service so that parents of disabled children who need postural support can try the Travel Chair before flying.  We are hoping that the airlines will buy them and Virgin has already ordered them. Parents can also buy them. We are offering a service where parents can try out the chair in situ in a fuselage that looks like an aeroplane and you can walk between the aisles and experience the tightness of the seats. You can actually find out “will this chair suit my child?”.

We were approached at Meru by Virgin, Monarch and British Airways one and a half years ago to design a seat that suit disabled children. They wanted a seat that would provide postural support to disabled children while flying.  10 years ago, Meru had created a seat for British Airways, the Travel Chair Mk1, so it was a good opportunity to revisit it. It has been carefully redesigned and we have done extensive research, finding out from disabled children what their requirements and needs are, we now have the finished product for sale to individuals and charities for £2500.

Civil Aviation Authority Safety Notice

You will also find some more useful facts about the use, weight and storage information of the chair on the CAA website. There is a safety document from the Civil Aviation Authority for aircraft companies and passengers about the chair here.

Video about the Meru Travel Chair

Below you can see Graham Race (TravelChair Designer – MERU) speaking at the Hamburg Aircraft Interiors Expo about the TravelChair.

As you Travel

When you’re travelling the equipment you keep on you needs to be minimal to make the journey as easy as possible. Keep all your regular travel information on your person including tickets, passports and relevant paraphernalia. Also keep a copy of the most pertinent information about your child’s condition to hand in case of emergencies and the same goes for any emergency medications.

Travel isn’t all about the admin though, be prepared to enjoy it. Stock up your child’s travel bag with their favourite snacks and games and ensure reminders of home are present to keep them comfortable.

If you’re travelling by car you should also factor in breaks to ensure no one gets overwhelmed and you are able to enjoy your journey as much as possible.

Holidays for Children with Autism

Preparing for a holiday with children on the autistic spectrum takes considerable effort and as well as all the above points you may need to be discerning with your choice of destination. There are several holidays across Europe which have been adapted especially for Autism families to ensure the whole family have a fantastic experience.

Happy Kids Holidays for example rents ASD-friendly cottages in France and the chance to prepare for the break with personalised social stories and online chats so your child can get to know their environment before they arrive.

There are also breaks in the UK which include specialised Autism-friendly sessions such as horse riding lessons at Coworth Park in Berkshire which also incorporates sensory play.

Have a Happy Holiday

Travelling with children with disabilities can be hard-going and even arriving at your destination can be difficult with children who find change hard to cope with. There are ways and means though and we hope our points give you a further opportunity to explore what’s available and take the step to introducing your child to new experiences. It’s great for the family as a whole too.

Kindle Fire for Special Education

Kindle Fire for Special Education

The Kindle Fire Tablet comes to the UK

Kindle Fire for Special Education

Kindle Fire Tablet

We have discussed the launch of the Kindle Fire in the past and how it can be used in a special educational environment. The newest incarnation of the top Amazon product has now been announced on the UK version of the site and is due to be released on October 25th 2012.

Amazon has brought their Kindle a long way from a simple eReading device. Now, it stands out amongst the competitors such as the Barnes and Noble Nook and the Kobo. Its product range is further advanced and their Kindle Fire HD Tablet is described as the most advanced tablet of its size. Kindles are for more than just readers now; they can help in many environments including the special educational needs classroom. What’s also encouraging is that they’re extremely affordable compared to other devices on the market such as the Apple iPad.

A Closer Look at the Kindle Fire for Special Education

The Kindle Fire has been the most popular item on Amazon.com for a long time and it has been further developed and brought to the UK. A small, handheld tablet device available for less than £150, the Kindle Fire
can be packed full of tons of apps and run all manner of games, educational support apps and more. The Fire is also easy to handle for users with disabilities which affect their dexterity and grip.

It incorporates a touch screen and Android operating system. It has been equipped with a new 1.2GHz processor to improve performance and incorporates all the qualities of an Amazon reading device, so you can access many books and stories and also a high-spec tablet device. The Amazon Kindle Fire is ideal for the special learning environment because of its affordability and quality. The price is fantastic for what you get and all users can benefit from different features within the device.

There is also the HD Version which is even further enhanced with Dolby sound and a choice of both 16GB and 32GB versions.

Apps for the Kindle Fire

Amazon Kindle Fire for Special Education AppStore

Amazon AppStore

The full range of apps available for the Kindle Fire in the UK is only accessible via the UK Amazon Appstore. However, we’ve been able to take a look a few currently available in the US and are sure similar options will be available through the UK store. Popular apps for the Kindle Fire for Special Education include:

TapToTalk : an innovative AAC app which promotes communication and learning

iStoryBooks : interactive audio story books, ideal for the bookworm of the class

Calm Counter : a behavioural management app for children with challenging behaviours and difficulty expressing their needs verbally.

Autism iHelp Series: a range of specifically designed apps for those with an Autistic Spectrum Disorder. Encouraging speech and learning in several categories including: Home, Animals and Food.

Please note, many of these apps are available for other tablets and via Android and Apple so we’re sure they’ll come to the UK Amazon Appstore too.

Amazon Fire in the UK

We can’t wait to enjoy all the apps on offer from Amazon.com and are sure users looking for an affordable tablet option will be considering the Kindle Fire for Special Education as a great value version of more expensive, higher-spec competitors. There are so many tablets on the market, it is clear there is a lot of choice but the Amazon Fire has already taken the US by storm, so maybe the UK is next?

Here’s a look at an original review of the Fire, before it was launched in the UK:

New Amazon Kindle Fire Launched in the UK

New Amazon Kindle Fire Launched in the UK

A Closer Look at Amazon’s Exciting New Product Range

We’re excited to announce that the new Kindle Fire Tablet has finally reached the UK, with its release date scheduled for next month. As the biggest selling product on Amazon.com, we’re sure it will be a huge success in the UK too and we’ve been waiting for its launch for a long time now. We initially discussed the Amazon Kindle Fire back in June and are now excited to see it here in the UK. Let’s take a look at the full range of new products from Amazon.

Amazon Kindle Fire

Amazon Kindle Fire

New Kindle Fire

The original, most desired product. The highest seller on Amazon.com and soon to be the same in the UK we don’t doubt. With a brand new processor promising 40% faster performance than the original design, if you’re looking for high spec without the high price, this is definitely an option to consider. Amazon highlight the simplicity of use and portability as the highlights of the their original Fire and we have to agree but also rate it’s super value when compared to other leading products from Apple and Blackberry for example. It features an intuitive 7″ Touchscreen and a 1.2GHz processor.

Amazon Kindle Fire HD

Kindle Fire HD

Kindle Fire HD

If high spec is really important to you, the HD model is another top consideration. Available in 16GB and 32GB models, both for under £200, the HD features Dolby sound and super-fast Wi-Fi. Ideal for use in a learning or entertainment environment, games and apps can be accessed easily and enjoyed in the highest quality. It’s hard to believe Amazon are able to offer such high quality products at such an affordable price.

Amazon Kindle Touch eReader

Kindle eReaders have taken the world by storm. Most people don’t even use the word eReader anymore; simply Kindle which shows their domination of the market place. The original design featured just keypad buttons but it has been developed and now has an integrated, intuitive touchscreen. Ideal for users with motor skills disabilities, the Kindle Touch responds efficiently to light touches and is also equipped with text-to-speech capabilities so it can read aloud to you.

We’re looking forward to the arrival of the Kindle Fire and Kindle Fire HD in the UK on 25th October and are sure you are too. If you have any doubts about the product at all, check out this review video:

In our next post we will be looking at the Kindle Fire for use in Special Education whether it will be an alternative to the ipad.

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