We first came to Brainwave when Natalie was two and a half years old. We had struggled since she was 9 months of age to get a diagnosis from the Consultant, and once we had the diagnosis of cerebral palsy, we were desperate for help and support of any kind but which we discovered was sadly lacking. We were told she would never walk, talk, sit up or achieve academically. We were distraught.
No-one seemed to care that Natalie was a ‘whole’ child. Nobody seemed to have any sense of urgency that she had little movement, and any movement she had was abnormal. One person would look at her hand movement, someone else her leg movement, and all they could offer was school term-time input to treat the symptoms of her condition. We were frantic.
Through investigating alternative options to mainstream physiotherapy we found Brainwave. It wasn’t easy back then as there were no home computers to ‘Google’ on. Visiting the centre for the first time was like a breath of fresh air and we felt as if a weight had been lifted from our shoulders.
We met the team of therapists who saw Natalie as a whole child – not in various bits and pieces. She, like us, immediately felt at home as she was assessed over the first 2 days. The other amazing thing was that we were asked questions about our daughter, and the information we gave was not ignored or discarded as it had been up to now by doctors and physiotherapists. The knowledge we had of our child was valued by Phil, Carl and the team, and used to produce an individual Programme of therapy for her. Brainwave believed that as her parents we knew her best!
During that initial visit and the countless visits since, we have never, ever felt rushed. The team have devoted as much time as necessary to Natalie and her needs. Over the years if we have been unsure of any aspect of the Programme there has always been someone at the end of the phone, or after she had hip surgery, Carl came out to assess her at home. We were so appreciative as circumstances would have made it difficult to travel.
Being introduced to the Brainwave Programme was fantastic! It was the first time that anything had made any sense to us. It was made up of exercises and activities lasting between 1 – 2 minutes each, and added up to about 25 minutes altogether. It had been devised just for Natalie and her needs. We could see the benefit of the exercises it contained and the philosophy behind it. Brainwave gave us time and support which we hadn’t previously experienced elsewhere. Everything was explained fully, demonstrated, and then practiced by us. All this was videoed so that we had a DVD of it all to take away with us. The areas that Natalie needed most input in with her physical development were specifically targeted with the Programme. After just one month we began to see terrific progress! Each time we returned for a re-assessment (about every 4 – 6 months) she had progressed more and more. We found it hard to believe that she would be able to cope with the standing element of a Programme, but she did – just as she did with taking her first steps, and walking independently!
It was so helpful to have the structure of the Brainwave Programme to work to, with the timed exercises. You knew just how much to do, and because we repeated it several times a day, it meant that she very quickly made advances. All the targets that were set were realistic and achievable, but also Natalie was challenged, and she enjoyed the challenges, and achieving the goals set. We really felt that, at last, we were doing something positive to help her, and that what we were doing was very obviously working! Before Brainwave our daughter had physiotherapy once a week (excluding school holidays). She made more progress in one month with Brainwave than she did in over a year with conventional input.
Natalie is now 21 years old. She underwent massive spinal surgery successfully in 2009 before taking her place at University to do a BA Hons Degree in Animation in September 2010. She has chosen to live in halls of residence and is fiercely independent.
We always wanted to look back and know that we tried everything for our daughter. Now we can confidently say that we did, and we all know that without the help and support of Brainwave that Natalie would not have fulfilled her potential – every child’s right.
It is very difficult to put into words what Brainwave’s unique points are. It has to be experienced to be believed and is just very, very special.