Told by Benjamin’s mum, Rebecca
Benjamin was born prematurely at 32 weeks. We left the Special Care Baby Unit with no health concerns ready to start our journey as a family of five. At the age of five months, we realised that things were not quite right with Benjamin’s progress and development. Fast forward six years to now and Benjamin is still unable to sit unaided, crawl, stand or walk. His diagnosis includes Cerebral Palsy, Epilepsy and Benjamin is registered blind.
In the early days we were left feeling lost and confused however we made a promise to our son that we would never let a diagnosis (or three) define Benjamin’s future. The research then started into what we could do to support Benjamin and his development. Through lots of Google searches we found Brainwave and without hesitation booked him in for an assessment.
For the first time as parents, we felt supported. Benjamin’s therapists really got to know him and his cheeky little ways… they quickly learned that he loved bubbles and hydrotherapy! We were able to ask questions which we had never felt we could ask before. We left with a very detailed Physio Programme and a set of Speech and Language goals.
First and foremost, attending Brainwave made us feel like we were doing something positive for Benjamin and gave us some more structure to his therapy. We learned that physio is not just about stretches but different positions for play and how play-based activities can have such a significant impact on his progress and development.
Instead of just doing static stretches with Benjamin, we were encouraged for example to get Benjamin to play cars with his brothers with him sitting in a crossed leg position, we never realised the benefit of such a position for him.
For us as a family the Brainwave Programme has supported our journey and with every reassessment made us realise the positive progress which Benjamin has made. He can now sit unaided for a few seconds and his communication has improved immensely.
Benjamin received the life changing Selective Dorsal Rhizotomy (SDR) surgery only six months ago. Unfortunately as Benjamin’s Gross Motor Functional Classification System (GMSCF) score is a grade five we had to self-fund the operation. As parents this was one of the hardest decisions we have ever had to make as the surgery is permanent. However, Benjamin’s recent reassessment at Brainwave proved that we had made the right decision.
We would encourage any family in a similar position to us to get in touch with Brainwave to find out how the Programme can support their child’s journey and progress. It can be very daunting taking those initial steps however I have every confidence that it will be worth it. Brainwave has changed the life of so many children and I know will continue to do so.