From Cancer to SEND – a bumpy journey of acceptance.

calendarNovember 30 2019

by Emma Bara

In July of 2012 our family was dealt a body blow when, at the age of 2 ½, our daughter, Adi, was diagnosed with a brain tumour A year of intensive chemo and radiotherapy followed a 7-hour surgery, which we got through mostly in a shocked daze with the help of family, friends, charities and amazing hospital staff. During treatment our life was consumed by hospital stays for treatment, appointments for scans, assessments by healthcare professionals and visits from the community nurses.  We lived on constant standby for the next emergency, call from a doctor or mad dash into hospital for a blood transfusion or antibiotics. We did our best to ensure that our young son, Asher, was holding it together but otherwise didn’t have space to think about much else. Once treatment came to an end, our lives suddenly became less prescribed and we weren’t sure what to do with ourselves. Oddly, instead of feeling elated, we felt a bit scared, a bit alone and a bit disorientated.

People think that once treatment for cancer has finished then the trauma is all over for the child and their family, that they can now get on with their lives just like everyone else but the reality is somewhat different. The treatment was successful but it was also brutal and there are lasting impacts; Adi has been left with hearing, sight and cognitive impairments; she needs daily hormone injections (which she does herself!) and has other ongoing issues. At first, 3 monthly appointments for MRI scans, checks on her eyes, ears and hormone levels and oncology clinics kept us busy but now these appointments have become less frequent and in June 2019 we were told that she only needs to attend the oncology clinic once a year and doesn’t need scans anymore!! Woohoo!!!! It has been six years since we finished treatment and we finally feel that we are able to look about us and take stock of where we are.  

We didn’t stop thinking about Adi as a cancer kid until last year. It took a visit from the teacher for the deaf to make us realise that this was what we were doing. For several years running we’d been invited to a Deaf Awareness Day at a local primary school, a mainstream school with a unit for deaf children. For several years we didn’t bother going. Last year, Adi’s teacher for the deaf mentioned it to us again, I ummed and aahhed, until she said, ‘You don’t think of Adi as being deaf, do you?’ That comment stayed with me for weeks, slowly getting louder and louder in my mind until, a couple of days before the Deaf Awareness Day, I rang up and asked if we could still attend.  The school was very happy for Adi to join in and it was an amazing day for her. She could suddenly access all of the activities; she played with other deaf children and saw them interacting with their deaf teachers. ‘Mummy, there are children like me here, and some of the grown-ups even have hearing aids!’ she said excitedly at the end of the day, ‘do you think I could come to this school?’. Just like that, we stopped being the parents of a cancer kid and became the parents of a deaf child.

I have to say that the local authority wasn’t impressed with us. The Deaf Awareness Day was in July and we submitted our request to transfer with just a few days to go until the end of term. That meant they had to process it over the Summer holidays to allow her to start in September but for Adi it meant a very excited and happy Summer, waiting to start at her new school with other children like her. It took a while for her to settle in properly but it was definitely the right move for Adi. She is now learning British Sign Language and it has given her a whole new additional way to communicate. She is also learning about her deafness, what she needs and how to express that to others. At the same time, David and I are also becoming more deaf-aware. We are understanding better some of the things that Adi finds difficult, why that is and how to make things easier for her.

Making the transition from a ‘cancer family’ to a ‘Special Educational Needs and Disability (SEND) family’ has taken time and we are still adjusting and understanding what it means for us. The longterm effects of the chemo and radiotherapy are likely to continue to emerge for us as Adi grows up.  For now, learning to take a different approach has helped us enormously in supporting Adi and enabling her to access the world around her and reach her full potential.  

Emma Bara is co-founder of and proud parent of two.

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