These are just a few of the many hundreds of children who have benefited from the Brainwave Programme.
To read about them, just move the mouse over the relevant picture and the case history will appear.
To read about them, just move the mouse over the relevant picture and the case history will appear.
GIVE £5 to Brainwave by texting "BRAW22 £5" to 70070. Please ask bill payers permission.
CASE HISTORY - by Anita Croucher
Edward was born in 2005 and got into distress during the labour. He had a decelerating heart rate that didn't recover. We ended up with an emergency forceps delivery and I knew instinctively that something was wrong.Edward wasn't breathing. He was taken to Neo-natal Intensive Care, where he was ventilated. It was the worst moment of my life. After 35 minutes, he decided to breathe by himself. Within the first 24 hours he suffered from abnormal movements or fits, so he was heavily sedated. We then spent the next 12 days with him in intensive care and another four in the special care baby unit before he was finally discharged and we could bring our gorgeous baby home.
We were told that he would have to be monitored over the coming months but we were just glad to have him home.
When Edward was 16 months old, he was finally diagnosed with Spastic Quadriplegia Cerebral Palsy. Although in our heart of hearts we knew the consultant was going to tell us this, it still came as a shock. After hearing the news I hit Google and found Brainwave.
Edward's Cerebral Palsy severely affects his mobility. He can't walk unaided and, until recently, he was still in nappies. His fine motor skills are considerably delayed and awkward and his speech has also been delayed. He only started speaking in four or five word sentences about two years ago.
When we began our journey with the Brainwave we didn't know how it would help Edward, but the team were so positive that he would be able to achieve more independence that we felt really encouraged. Our first goal was to get him to crawl with a reciprocal movement instead of 'bunny hopping'. He achieved this in the first six months. When we returned for our first review, they couldn't believe his progress. Every time we go back for a Reassessment they are astounded at how well he has improved, and I know that if it wasn't for Brainwave he wouldn't be achieving the milestones that he is.
Since then, our objectives have been to improve his speech and his core stability, with our ultimate goal being to get him to walk unaided. This may never happen but with the Brainwave Programme, anything is possible. We never thought we would hear Edward speak so even though he turns six in March, you never know what is around the corner.
Brainwave's staff are amazing. They gave us new hope that we would be able to do something productive for our child. Their ethos of 'the parent knows the child best' is refreshing and they give you the tools that you need to help your child progress to their full potential. They provide the exercise Programme and they show us how to do the exercises. Then we have the hardest task of all - convincing a five year old that he needs to do them! But they are there to support you every step of the way. Any problems, they are at the end of the phone. I couldn't imagine life without them.
It is hard work for all of the family but it continues to be worth it. Being able to help our son progress and become more independent has been very empowering and every time we visit the Centre, we come away feeling more positive.
These were the two things that really struck me when we left after our first Assessment: we were now able to help our son and we had been given the tools to do it. Until then, I had felt completely helpless.
Brainwave are our saviours.
Our trip to The Brainwave centre – warning this is quite long so grab a cup of tea and a biscuit!
Thanks to everyone that supported us with fundraising for William to be able to come to The Brainwave Centre, we have just had our first sessions and wanted to let you know all about it. Special thanks to Ifield Chestnut House & the Masons for their generous contributions.We travelled up to Bridgwater in the car which we were slightly worried about as William isn’t a good traveller but it was ok, there was a bit of fuss but a few stops at Little Chef and the nursery rhymes on repeat soon sorted that out!
The accommodation was amazing, a beautiful 2 bedroom bungalow that was so nice you could easily have lived there! William was also very impressed and settled in very quickly, even managing to sleep through until 6am the first night!
DAY ONE
Our first day was the assessment day and started off with a meeting with one of the team taking a detailed history of Williams birth and everything that has happened since, he was shattered after his long day the previous day so he slept through most of that!After that it was down to work, we spent 2 hours with 2 very experienced physiotherapists. They tried William out in all sorts of positions, sitting, standing, lying, rolling etc etc. A lot of the positions he’d never been in before and we’d never been shown them either and the few things we did know turned out to be completely wrong for him! He tolerated the whole session incredibly well and surprisingly didn’t cry once.
The therapists explained Williams extension patterns and why they happen which we didn’t understand previously. They then showed us some techniques to break his extension and help him to maintain a better position. They explained to us that William extends a lot because he doesn’t know any differently; he hasn’t developed his stomach muscles to be able to do any other movements properly or to have control of his limbs or head. The plan is to try and help him to build up these stomach muscles in order for him to have better control and therefore when he does go into extension he can try and control it himself, it’s very unlikely that he will ever stop going into extension completely but if he could regain control quicker and easier that would be a massive step for him and would help him to be able to do a lot of things he can’t do now. Obviously this will be a long slow process but it all starts tomorrow!
We were shown some different sitting positions for William to try that will allow him to develop the stomach muscles and be in a good position to play.
They explained to us that one of the reasons William dribbles is that he hasn’t developed his cheek muscles and that is why his cheeks look so chubby, like babies do before they learn to chew. So he now has a special chew stick that we put between his teeth and his cheek so he can learn to chew and develop those muscles; that will in turn help him with his eating and communication etc. We always thought that the reasons the therapists and doctors still told us to give William small tasters of food even though he now has a gastrostomy was so that he could sample different tastes, not so that he could develop these muscles so that was a real eye opener.
They tried him in positions on a wedge and a roll and he tolerated most of the things they tried, those that he didn’t tolerate they simply adjusted to suit him.
We discussed Williams equipment that we have at home and they were very surprised by the type of standing frame he has, basically it is totally unsuitable for a child with dystonia which explains why William doesn’t tolerate it – good god is there anything that our physio didn’t get wrong?! So when we get home we’ll be on the case to get a different type to try out! Basically he needs what is known as a prone stander, which is where he is on his feet but on his front on a board at an angle so he is not fully upright, that way he can play and learn to bring his head down. The standing frame he currently has starts with him lying on his back and being strapped in and we then tilt it until he is upright, the problem with this is that the more pressure points he has the more he pushes so he is constantly fighting this one!
I showed them how we’ve been taught to help William to learn to roll and they weren’t very happy. They explained that William isn’t ready to roll yet, when we try he just goes straight into extension, his head goes straight back and he looks like a banana! So instead they’ve encouraged us to try William rolling on his back from side to side and not right over, that is something he tolerated really well and in time once he’s confident with that and has built up the muscles he needs he will be able to try rolling right over.
The afternoon consisted of a hydrotherapy session which William enjoyed, the physio spent a lot of time trying out different positions in the water, similar to those on land, and helping William to swish and sway to experience different movements and also encourage the stomach muscles to strengthen.
We were shown a lot of things to try when we go swimming, tomorrow William will have hydro again and we will be shown a range of position / exercises and will be taught how to carry them out properly.
Then we went on to going through a special graph they use to plot childrens levels and abilities in correlation to age – as expected William is below the age level he should be but we were really encouraged when they showed us what he can do and in some things he was much more developed than we would have thought. For example, his vision is at a level similar to a 12-15month old and we would have thought it would be far below that, and his socialisation skills are that of a 1 year old. All this may sound negative but to us it was very positive as it plots where he is now and we will be able to see how he develops.
We then went on to talk about feeding and showed the therapist how he eats, they were surprised by how well he does eat but had some tips for us which helped a great deal.
Then they spent the last hour or so going through the programme they have put together for us to carry out at home, it is a series of 1 or 2 minute exercises and positions that put together will take 30 mins to an hour & we will do it every day. Tomorrow they will go through it all with us, showing us how to do it and then teaching us both how to do it properly and it will all be recorded on a DVD for us to take home.
William was shattered after the long day and all that hard work, he was in bed before 8pm! Roll on day 2!
Morning of DAY 2
This morning started at 4 am when William decided to wake up! We put his nursery rhymes on and settled him back in his cot which worked well until the songs stopped and he cried again! After listening to them 3 times it was time to get up at 6am and get ready for day 2!Unfortunately due to Williams early start day 2 didn’t start off too well as he was so tired by 9.30. The therapists had planned to go through the whole programme with him but after a couple of exercises he was kicking right off and we couldn’t get him to do anything but go into extension! So back to the bungalow we all trudged and William was asleep a few minutes after his head hit the pillow!
After a well needed sleep William was a different child and we went back to start learning the programme. It starts off with showing him an object and a photo of the object with the aim to teach him some language which in turn will develop his communication skills. Then it is a series of different positions using a wedge, a roll and a peanut ball as well as sitting on our laps and different ways to lift him and get him dressed etc.
Gosia the therapist showed us each exercise/position with William so we understood how to do it before both trying ourselves. So William had 3 attempts at each one! Needless to say this wore him out! He tolerated the positions very well and those that he didn’t get straight away he soon tolerated once he was shown a toy or listened to his nursery rhymes. (if I hear Humpty Dumpty once more I may scream!)
We’re so proud of him to be able to tolerate trying out these new things so well and not crying once. Apparently they have a lot of sessions where the children cry throughout the whole thing so for William not to was a real achievement and shows how much he wants to learn all these things – then again whether he’ll manage it so well next time, we don’t know!
The strangest part of the whole programme will be getting used to picking him up and hold him in a completely new way to enable him to use his stomach muscles as much as possible and also to try and stretch his spine to work on preventing the scoliosis from getting worse. I need to show everyone else involved in his care how to handle him so that they are all doing the best thing for his development too – thank goodness for the DVD!
The whole programme is fantastic, it’s just a shame that we have had to fundraise to afford this therapy when really the therapy we receive from the NHS should be at this high standard too. Seems very strange & somewhat lazy that the physios in Worthing bother to train for so many years to become physiotherapists but then don’t carry out any hands on therapy and instead rely on equipment to do the job for them – and in our case equipment that isn’t even suitable for a child with dystonia like William! Still, I am so pleased we found this place and we will be coming back regularly in our quest to help Williams development as much as we can.
This afternoon its learning how to dress William and then a hydrotherapy session which I am secretly looking forward to the most!
DAY 2 AFTERNOON
Well the morning session wore William out so much that he fell asleep at lunch time and we couldn’t wake him up! We managed to carry him over to the centre and have a conversation and he was still asleep – that’s never happened before! He ended up sleeping for an hour and he’d already had a sleep in the morning so that was a shock! At least now we know if we need to wear him out then therapy is the way forward!The afternoon consisted of hydrotherapy which William enjoyed, we learnt a lot of great exercises to carry out in the water to help him to stretch & work out his muscles and improve his head control. We all had a go at holding him and carrying out the positions and he tolerated it well and seemed to enjoy himself. The pool here is lovely, nicest hydro pool we’ve been in! We tried out a fantastic star shaped rubber ring which William can go in – because of the shape of it he can put his arms either side of one of the star points and rest his chin on the rubber so he doesn’t go under the water, he relaxed straight away in it and was really happy. We were given one of these to take home so we can use it when we go swimming with him which we are planning to make a regular thing now we know what to do when we get there!
They also gave us a wedge, a roll and a peanut ball to take home to carry out the programme which is brilliant as those sorts of things aren’t cheap!
All in all the whole thing was incredibly successful, far better than we could have imagined and I think William will really benefit from it. We’re booked in again at the start of January for a re-assessment and that’s when they will see how he has progressed / changed and adapt the programme accordingly.
We are all shattered from the last 2 days but it was so worth it! The programme costs the centre £3500 per child per year and we only have to pay for 20% of those costs but they get no government funding and fund the whole of the programme throughout the year from donations and fundraising. So if you would like to help William and all the other children that attend the brainwave centre, please visit their website for more information.
Tomorrow we’re taking William to see the animals at Longleat – monkeys mainly as hopefully he’ll love them climbing on the car!
p.s. throughout writing this Kev has asked me a million times whether I mentioned him in it so yes Kevin now I have!!!
CASE HISTORY - by Lawrence and Sally Preston
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.
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.
MEDICAL
"What we appreciated was your honesty. Although you said you couldn't make Kieran better, you gave us HOPE that Kieran could improve. This we valued and still do… We can't thank you enough for all the support you gave us. We always say Kieran would not have achieved what he has today, and we would not have been as positive without the hope you instilled in us."
DOWN SYNDROME TESTIMONIAL - EMMA
I think Brainwave is brilliant. I'd been looking for this type of help, and although it took me three years, I know I've found it.
The therapists are fantastic; they are so supportive. At the Initial Assessment, they really gave us hope and made us feel there is something we can do to help Emma. They were there to help us, and to teach us how to help Emma.
So many people you see suggest that you do a bit of this, or that you do that, it can become quite mind-boggling. To have a clear and structured programme written down in a simple list that you know is addressing all her areas of development, is brilliant. You know then that you're doing as much as you can.
Although Emma had just taken a few steps when we started Brainwave a couple of months ago, I still can't quite get my head around seeing her walking about now. We started with working on her balance, and now she's doing so well.
I think Brainwave is brilliant. I'd been looking for this type of help, and although it took me three years, I know I've found it.
The therapists are fantastic; they are so supportive. At the Initial Assessment, they really gave us hope and made us feel there is something we can do to help Emma. They were there to help us, and to teach us how to help Emma.
So many people you see suggest that you do a bit of this, or that you do that, it can become quite mind-boggling. To have a clear and structured programme written down in a simple list that you know is addressing all her areas of development, is brilliant. You know then that you're doing as much as you can.
Although Emma had just taken a few steps when we started Brainwave a couple of months ago, I still can't quite get my head around seeing her walking about now. We started with working on her balance, and now she's doing so well.