Have you ever wondered what a child see’s through their eyes? Or what their perceptions are of what they experience? We could...attempt to imagine ...with some thought… but what if… the child has a disability….. could you imagine what they “see & how they see it”? This design proposal is based on what a child encounters daily when living with a disability or lifelong condition.A visual diary involving myself & my son…who now is asking questions:
About:Disabled Kids or kids with a lifelong condition experience lots of hurdles...they encounter a journey of hospital visits, surgery, therapy, medicines & difficult to explain medical procedures/tests , extra help at school, sickness/absent from school,...plus knowing they are different.With any child... it is often up to the parent’s to explain & reassure. They will go down every avenue available to aid their child.
Statistics in 2010 by Contact a Family showed: There are770,000 disabled kids in the uk alone aged under 16, that is 1 child to every 20.Having a disabled child not only affects the child but it can also put a tremendous strain on the family: Three quarters of families in the uk with disabled children feel so isolated that it has caused anxiety, depression and breakdownIn Northern Ireland alone 81% of parents said they experience poor mental health such as depression or breakdown due to isolation. 79% felt that a lack of support caused their isolation. Cafamilydec 2011 Parents often feel frustrated & alone because no one you know can relate to your experience.
What: My design proposal will focus on a child born with Tracheo-Oesophageal Fistula (TOF) and Oesophageal Artesia (OA) statistics show that 1 in every 3,500 births are affected with these conditions. Tofs info.So what is it? TOF/OA are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway), corrective surgery is normally carried out within days of birth. Pics: Normal child & oesophageal atresia OA-the child is born with a pouch at the top of the oesophagus (foodpipe) which prevents food from reaching the stomach. In tracheo oesophageal fistula TOF –the bottom of the oesophagus is joined to its trachea (windpipe).Some children have to undergo additional surgical interventions. Some will experience only a few problems, others may have difficulties with swallowing and digesting food, Reflux and respiratory problems. The effects of surgery and associated health problems can add a great deal to the usual challenges of parenthood...but also affects the child greatly!
Why/reason: Child asking lots of questions realizing now that he is different! on extra help school, sickness, hospital, medicines, painful procedures etc... explain all about tof that is often difficult comprehend. What do you say??!!Users: kids, parents, carers & could be of interest to medical professionals & special needs educational bodies especially those who may encounter these conditions & would like to gain further personal insight.Any age... open age limit
What’s out there: At the moment there is nothing available for the kids to view all information is textual based & visuals poor. Parents/kids/carers look up internet (TOF forum), TOF textual book or other TOF parents.Timothy Archibald parent of an autistic child produced Echolilia: A Father's Photographic Conversation with His Autistic Son http://www.time.com/time/photogallery/0,29307,2027433,00.html#ixzz1gFFfy0Nb this project is ongoing, its a personal journey between father & son.
When: Use anytime that’s needed. Anytime/ anywhere ...car/bus/train...Long hospital journeys /overnight stays...when child anxious & asking questions.. It could be used many times to for parents/carers to reassure & visually inform.Customers: There are 11 support groups worldwide.Who would be interested in this project:6 europe, 3 america, 1 canada, 1 australiaTOFS.UK, KEKS German support group for OA/TOF, VACTERL group for VACTERL Swedish support , VOKS Dutch support group for OA/TOF, AQAO Oesophageal Atresia Association in Quebec, Laryngeal Cleft Support Group EuropeanSupport Group for children with laryngeal cleft, AFAO (Association francaise de l’atresie de l’oesophage)France, EA/TEF USA, TEFVATER US Vater Support Group, The VATER Connection US group for VACTERL, OARA (Oesophageal Atresia Research Auxilliary) Australian support group.Also charities: National Childrens Bureau, Contact a family, Action for Children. And local health services such as Northern Ireland Health Trust + Health Promotion Agency. At the moment I have received interest from uk support group & local Paediatrician Dr. Mallett who are keen to view final design. Audience worldwide...this can be used either just for kids with tof or also any child.
Final outcome... At present this visual diary will follow & record daily what a 5yr old child encounters...my son will input on the pictures taken & on what subject matter...all related to his fears & questions.. I’m unsure yet what the final outcome will be for this project as there are many possibilities, it could be an ebook, or phone app who knows anything is possible.Before I forget.. a thought may have crossed your mind that being mum and very close to the subject that “NO” this won’t be possible as she is to emotionally involved..but who better than a parent could give an insight into the anxieties, emotions & fears of what a tof child see’s through their eyes!