Through the eyes of a child

RATIONALE:

Have you ever wondered what a child see’s through their eye’s? What if the child has a disability? Could you imagine what they see? This design proposal is based on what a child encounters living with a disability or a lifelong condition. A visual project involving myself and my son, who is now asking questions, aware that he’s different from his friends.

In the UK alone there are 770,000 disabled children under the age of 16 that is 1 child in every 20. My design project will focus on a condition called Tracheo Oesophageal Fistula (TOF) & Oesophageal Atresia (OA) which reoccurs in 1 in every 3,500 births. So what is it? TOF and OA are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway). In TOF the bottom of the oesophagus is joined to the windpipe, in OA the child’s oesophagus ends in a blind pouch, and corrective surgery is required, in order to feed, as there is no way through. Some children have to undergo additional surgical interventions; some will experience a few problems whilst others have difficulties with swallowing, digesting food, Reflux and Respiratory problems.

Children born with TOF/OA, or any child born with either a condition or a disability, encounter lots of hurdles. They each experience their own individual journey of hospital visits, therapy, surgery, medicines, painful procedures and medical tests. The child may also have concerns with school regarding extra help, feeding issues, absenteeism etc., plus having to take medicine at school. Knowing that they are different from their friends.

What prompted this proposal was my child is now asking questions realising that he is different from his friends, as they don’t get extra help at school. He knows he has food and feeding problems. He takes lots of medicines, and he is sick often and wonders, why all these hospital trips. He wants now to know about his TOF which is often difficult to explain and comprehend.

The purpose of this project and the goal to achieve would be to break down the issues these children experience and visually create a fun understandable and enjoyable experience for the children to relate to.

PROBLEM TO BE SOLVED:

At present there is nothing available for the children to view, most information is textual and visuals poor, not appealing even for adult viewing. The design challenge would be to gather not just TOF/OA and issues associated with it, but also cover the social side because all these children are going through the same experience and it is often up to the parents to try to explain and normalise these stressful periods and emotions.

To solve this problem I would create a visual experience of the issues these children face and make it child friendly, fun, with the children keen to explore more.

USERS/CUSTOMERS:

This project would be of interest to children that are born with TOF/OA, their parents, carers and friends. Also it could be of special interest to medical professionals and special needs educational bodies, especially those who may encounter these conditions and would like to gain further insight.

With this in mind my project will have an open age limit.

At present there is nothing designed specifically for these children to view. There is a TOF Child Book written by adult TOF Vicki Martin but this book has been designed basically for parents and interested medical professionals in mind. Most of the information in the book is textual and factual; the graphics applied are neither visually appealing nor appeasing and can appear quite alarming when first viewed. The book was published in 1999 it is outdated and is currently in the process of being updated.

There is a TOF forum which I and other parents can view, this is accessed through the TOF website whose charity is based in Nottingham UK. Other parents post on this, it is really beneficial as you often feel alone when facing problems associated with this condition. Parents rely on other parents as sometimes; some questions can only be answered through a parent’s experience.

Parents are often looking to knowledge themselves and ensure the child is treated as normal as possible. They seek information to understand, familiarise and reassure themselves or the child. As TOF and related issues are often difficult to explain and visualise, knowing exactly what to tell your child, can be an issue.

Whilst researching I came across a project between father and son. Timothy Archibald

produced Echolilila – a father’s photographic conversation with his son. In this project

Timothy Archibald uses his camera to find an emotional bridge to his son; they began

making photographs collaboratively, as a way to find common ground and attempt to

understand each other. Soon after the project began his son Elijah was diagnosed on the

autistic spectrum. “Though the diagnosis gave me the words and history to understand my

son better, it didn't take away the mystery and the need to try to find an emotional bridge

to him”.

For this design project to be successful it needs to be flexible and accessible to be used anytime that’s required. It could be used during long hospital visits, journeys or when the child is anxious and asking questions. Also it could be used many times for parents, carers and friends to give them a visual insight, into the TOF child and issues they face.

There are 11 TOF/OA support groups worldwide, 6 in Europe, 3 in America, 1 Canada and 1 Australia that could be interested in this final project as previously mentioned they too have nothing available for the children to view. I will be in contact with TOFs in the UK to see will they view the final project and contribute with any information that I may need for research.

Other charities such as the National Children’s Bureau (NCB) they support children, young people, families and those who work with them. NCB is a leading publisher in the field of children's services. They encourage proposals from first-time authors and are currently commissioning new books in subject areas such as disability and special needs, health and well-being, early years and learning.

Contact a family and Action for Children are both part of the Every Disabled Child Matters campaign, working to make disabled children being heard, a priority. They may also be interested on the completed design. The Northern Ireland Health Trust could be included in my list of potential customer’s.

This design proposal could be designed by anyone who has an interest in the subject but my design would portray more of a personal insight as I am close to the subject and living through the issues surrounding TOF daily.

TECHNOLOGY/MEDIA/MANUFACTURE:

There are many technical options for the synthesis of this design, a photographic visual diary or an interactive storybook, maybe with the kids putting themselves in the picture. It could be an ebook placed on Amazon and viewed through a Kindle. I have researched apps for mobile and ipad, because of pricing an app for ipad isn’t possible. Maybe an animation which could be accessed through Utube and screened to a wider audience.

I believe that an interactive storybook would make the most money it could be extremely popular with the TOF children and since statistics show that 1 in every 3,500 are born with TOF, that’s quite a lot of children that could be interested in viewing. To publish a book in hard format would be costly, finding a publisher, printing and how many volumes to print could affect the price of the book plus it won’t be as fun to use as an interactive book.

My design could be in digital format accessible to all and placed on a new TOF kid’s website on all 11 charity sites to promote. There is no fun interactive design out there for these children and parents have only access to the TOF Child book, TOF forum, other parents and doctor’s advice. Visually there is nothing.

TIME/PLACE:

This design entity could be used anytime as its purpose is to visually inform the user either for humour, insight or personal purposes. It could be used during the day or night, maybe when the child is going to therapy or overnight hospital stays, when the child is anxious and asking questions. This design could be 2 to 3 minutes long; basically long enough to entertain and inform for whatever purpose the user requires it for.

The design could be used when the child is off sick, which happens quite often during winter months. Most sickness during this time is due to respiratory problems, this topic will be included in the final design.

This design project could be incorporated into an interactive website where children can interact with each other, maybe swap stories, foods that work, tips for taking medicines. Introduce games and maybe quizzes for family and friends to test their knowledge on TOF. Could be the first ever kid’s TOF club.

An Interactive storybook could have more stories added not just about sickness and TOF issues but also social issues, such as school worries, friends, emotions and fears.

The design could be in audio format, children could listen anywhere no matter where they are, maybe when the child is sick and does not want to interact with any device or person.

CONCLUSION:

Through the eyes of a child will follow a 5 year old boy who will input on the pictures

relevant to his TOF, fears and questions. It may begin as a visual diary and the final

outcome not finalised yet but it will show a more personal insight into a child’s emotional

journey of knowing, something’s just not quite right.

There are many options available for output of this project but at present further

information gathering is required, before I can move on with designing the project. I will

pinpoint areas to cover such as eating, getting food stuck, medicines, hospital and

therapy visits. Presently relevant now is the emotions and feelings that starting school

has created.

As this design project is targeted at TOF kids, their parents, carers and medical

professionals, especially those who encounter these conditions, and would like to gain

further personal insight. There will be aspects of the design that could interest other

children, parents and/or carers of any disability that is just not relevant to TOF.

As there is nothing at all out there for these children and with my son now knowing he is

different, what a perfect opportunity to design a visual solution to this major design

challenge.

Links:

http://www.cafamily.org.uk

http://www.ncb.org.uk/resources/publications/write-for-us

http://timothyarchibald.com

TOF/OA support groups:

AFAO French support group for OA/TOF

EA/TEF US support group for OA/TOF

KEKS German support group for OA/TOF

TEFVATER US group for VACTERL

The VATER Connection US group for VACTERL

TOFS UK

UK support group

OARA Australian support group

VACTERL Swedish support group for VACTERL

VOKS Dutch support group for OA/TOF

AQAO Oesophageal Atresia Association in Quebec

LARYNGEAL CLEFT SUPPORT GROUP

European Support Group for children with Laryngeal Cleft