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!!!
