CASE HISTORY – by Sarah and Gavin Hedges

Eleanor is 5 years old and following an injury at birth and starvation of oxygen, she now has brain damage which affects her speech, her development and she also has developed Epilepsy. We heard of Brainwave through some other special needs parents that had been and so we decided to do some research ourselves into the Brainwave programme as we were spending what felt like time and energy into appointments with various other professionals on Eleanor’s medical team that never actually seemed to get us anywhere other than another label or diagnosis.

We were apprehensive prior to our first visit, not knowing what to expect, wondering how Eleanor would react, wondering if we had done the right thing in bringing her little brother, unsure if we were being pushy parents, wanting someone else to see what we see in Eleanor but wondering if this would be another brick wall. We were very pleasantly surprised at how organised they were, initial letters and phone calls, covering everything beforehand and preparing us for what to expect, we were welcomed as a family and everything we did was together, including Eleanor’s little brother which for us was very important as we felt that all too often our focus can sometimes be mainly on Eleanor and her needs.

We stayed in one of the bungalows, it felt almost like a mini holiday, they are well equipped and homely and it helps to be onsite if you need anything or just want to pop back for some time out.

We were all very tired after the first day of assessment, lots of questions, lots of listening and talking and most of all lots of information. We were all very keen to go back on the 2nd day, Eleanor couldn’t eat her breakfast quickly enough, it was like a breakthrough, someone finally understood what Eleanor needed, finally it all started making sense. Our little girl that fidgeted constantly, couldn’t concentrate on anything, very difficult to communicate with and also had balance and co-ordination issues, actually became a little girl that although still had/has very complex issues, actually is our little girl that we know and love that seems now able to express what she needs and we seem more able to understand and meet her needs.

The therapists ran through our daily programme with us, I have to admit that the thought of a 30 minute program daily worried me, how was I going to fit that in to our day, it took nearly an hour to start with but once we got into the swing of things, it easily incorporated itself into our lives as Eleanor actually looked forward to doing it and would even ask to do Brainwave. Most of it can be slotted into daily routines too so it becomes just part of our usual day to day things rather than a specific thing we do each day.

We see lots of different professionals, each that specialise in their own fields, each giving Eleanor different labels and diagnosis, very few actually making life any easier for Eleanor. Brainwave is a breath of fresh air, and it’s the first time in 5 years that I actually cried with relief at what they managed to see and make sense of with Eleanor, I came away from the centre buzzing with ideas and thoughts, feeling more positive than ever and actually looking forward to working with Eleanor. They gave us all inspiration and hope beyond what we could ever have imagined.

Brainwave are the only professionals that treat the child as a whole person, they listen to what we say as parents and take it on board rather than dismissing it with a “that’s what all children do” remark .

They have a way of unlocking true potential, more potential in two days than I had seen in 4 years. The support to us as a family is truly amazing, I have never felt rushed or afraid to say or ask anything. The therapists have a way of never saying never, always looking for a way to help Eleanor when lots of other methods had failed.

The team of therapists are professionals that I totally truly trust with Eleanor and believe whole heartedly that their upmost priority is what’s best for her, regardless of anything else, their motivation and constant supply of patience has proved invaluable in trying to assess a very strong minded little girl who knows every avoidance tactic going.

Eleanor had an unsuccessful time at school and Brainwave went out of their way and beyond what anyone could possibly expect to support us and help us to make the next school transition as easy as possible for Eleanor. I truly wish that Brainwave could set up their own school setting for children like Eleanor, because I for one believe that what they do is truly amazing and it’s sad to think of all the other children out there that have all that stored away potential just waiting to be explored and realised.