Through the eyes of a childRATIONALE:Have you ever wondered what a child see’s through their eye’s? What if the child has adisability? Could you imagine what they see? This design proposal is based on what a childencounters living with a disability or a lifelong condition. A visual project involving myselfand 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 inevery 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 thechild’s oesophagus ends in a blind pouch, and corrective surgery is required, in order tofeed, as there is no way through. Some children have to undergo additional surgicalinterventions; some will experience a few problems whilst others have difficulties withswallowing, 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 hospitalvisits, therapy, surgery, medicines, painful procedures and medical tests. The child mayalso have concerns with school regarding extra help, feeding issues, absenteeism etc.,plus having to take medicine at school. Knowing that they are different from theirfriends.What prompted this proposal was my child is now asking questions realising that he isdifferent from his friends, as they don’t get extra help at school. He knows he has foodand feeding problems. He takes lots of medicines, and he is sick often and wonders, whyall these hospital trips. He wants now to know about his TOF which is often difficult toexplain and comprehend.The purpose of this project and the goal to achieve would be to break down the issuesthese children experience and visually create a fun understandable and enjoyableexperience for the children to relate to.
PROBLEM TO BE SOLVED:At present there is nothing available for the children to view, most information is textualand visuals poor, not appealing even for adult viewing. The design challenge would be togather not just TOF/OA and issues associated with it, but also cover the social sidebecause all these children are going through the same experience and it is often up tothe 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 faceand 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 specialneeds educational bodies, especially those who may encounter these conditions andwould 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 TOFChild Book written by adult TOF Vicki Martin but this book has been designed basicallyfor parents and interested medical professionals in mind. Most of the information in thebook is textual and factual; the graphics applied are neither visually appealing norappeasing and can appear quite alarming when first viewed. The book was published in1999 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 theTOF website whose charity is based in Nottingham UK. Other parents post on this, it isreally beneficial as you often feel alone when facing problems associated with thiscondition. Parents rely on other parents as sometimes; some questions can only beanswered through a parent’s experience.Parents are often looking to knowledge themselves and ensure the child is treated asnormal as possible. They seek information to understand, familiarise and reassurethemselves or the child. As TOF and related issues are often difficult to explain andvisualise, knowing exactly what to tell your child, can be an issue.Whilst researching I came across a project between father and son. Timothy Archibaldproduced Echolilila – a father’s photographic conversation with his son. In this projectTimothy Archibald uses his camera to find an emotional bridge to his son; they beganmaking photographs collaboratively, as a way to find common ground and attempt tounderstand each other. Soon after the project began his son Elijah was diagnosed on theautistic spectrum. “Though the diagnosis gave me the words and history to understand my
son better, it didnt take away the mystery and the need to try to find an emotional bridgeto him”.For this design project to be successful it needs to be flexible and accessible to be usedanytime that’s required. It could be used during long hospital visits, journeys or when thechild is anxious and asking questions. Also it could be used many times for parents, carersand 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 1Australia that could be interested in this final project as previously mentioned they toohave nothing available for the children to view. I will be in contact with TOFs in the UK tosee will they view the final project and contribute with any information that I may needfor 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 thefield of childrens services. They encourage proposals from first-time authors and arecurrently 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 Matterscampaign, working to make disabled children being heard, a priority. They may also beinterested on the completed design. The Northern Ireland Health Trust could be includedin my list of potential customer’s.This design proposal could be designed by anyone who has an interest in the subject butmy design would portray more of a personal insight as I am close to the subject and livingthrough the issues surrounding TOF daily.TECHNOLOGY/MEDIA/MANUFACTURE:There are many technical options for the synthesis of this design, a photographic visualdiary 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 researchedapps for mobile and ipad, because of pricing an app for ipad isn’t possible. Maybe ananimation 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 extremelypopular with the TOF children and since statistics show that 1 in every 3,500 are bornwith TOF, that’s quite a lot of children that could be interested in viewing. To publish abook in hard format would be costly, finding a publisher, printing and how many volumesto print could affect the price of the book plus it won’t be as fun to use as an interactivebook.
My design could be in digital format accessible to all and placed on a new TOF kid’swebsite on all 11 charity sites to promote. There is no fun interactive design out there forthese children and parents have only access to the TOF Child book, TOF forum, otherparents 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 usereither 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 isanxious and asking questions. This design could be 2 to 3 minutes long; basically longenough 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 duringwinter months. Most sickness during this time is due to respiratory problems, this topicwill be included in the final design.This design project could be incorporated into an interactive website where children caninteract 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 onTOF. Could be the first ever kid’s TOF club.An Interactive storybook could have more stories added not just about sickness and TOFissues 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 wherethey are, maybe when the child is sick and does not want to interact with any device orperson.CONCLUSION:Through the eyes of a child will follow a 5 year old boy who will input on the picturesrelevant to his TOF, fears and questions. It may begin as a visual diary and the finaloutcome not finalised yet but it will show a more personal insight into a child’s emotionaljourney of knowing, something’s just not quite right.There are many options available for output of this project but at present furtherinformation gathering is required, before I can move on with designing the project. I willpinpoint areas to cover such as eating, getting food stuck, medicines, hospital andtherapy visits. Presently relevant now is the emotions and feelings that starting schoolhas created.
As this design project is targeted at TOF kids, their parents, carers and medicalprofessionals, especially those who encounter these conditions, and would like to gainfurther personal insight. There will be aspects of the design that could interest otherchildren, 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 isdifferent, what a perfect opportunity to design a visual solution to this major designchallenge.Links:http://www.cafamily.org.ukhttp://www.ncb.org.uk/resources/publications/write-for-ushttp://timothyarchibald.comTOF/OA support groups:AFAOFrench support group for OA/TOFEA/TEFUS support group for OA/TOFKEKSGerman support group for OA/TOFTEFVATERUS group for VACTERLThe VATER ConnectionUS group for VACTERLTOFS UKUK support groupOARAAustralian support groupVACTERLSwedish support group for VACTERL
VOKSDutch support group for OA/TOFAQAOOesophageal Atresia Association in QuebecLARYNGEAL CLEFT SUPPORT GROUPEuropean Support Group for children with Laryngeal Cleft