Monday, 23 June 2014

The importance of breathing

Last week we spent 3 days in East Grinstead, Sussex, at the Advance Centre learning the Scotson Technique. I learnt about it from a friend, who in turn learnt about it from a friend. We camped near by using my parents campervan at Sumners Pond Fishing & Campsite and I heartily recommend them. Fab facilities, 2 disabled showers and really friendly staff.

At the centre we learnt about how the respiratory system develops in a new born baby and how children with neurological problems suffer with underdeveloped systems, especially if they need to be on ventilation. If a child isn't mobile their already suffering respiratory system suffers further as the normal small, movements that a 'mainstream' baby makes slowly builds their lungs and diaghrams. So a child born with difficulties falls further behind in a vicious circle; not getting the oxygen supply around their body they need to their brain and joints, not having as much energy to move and so not increasing their oxygen supply etc etc. Their underdeveloped diaphragm can be seen in physical abnormalities and posture; flared ribs, sunken chest and high shoulder blades.

So the science I understand. Seth has these physical attributes. They took photos so we have a benchmark later. Linda Scotson has a son with cerebal palsy,she developed the Scotson Technique on her son and she attributes his ability to not only walk but run marathons on the work she has done with him. She says that it will help posture, speech, mobility and eating. Linda also explained how the diaphragm aids digestion. The technique is gentle, slow rhythmical pressure on different parts of the diaphragm. You use a rolled up flannel so that it is soft and prevents you pressing too hard. It needs to be done every day and takes over an hour to complete the routine. We have to go back in 3 months to review Seth's progress and learn new elements to the routine, and we do this for the next couple of years. A charity paid for the cost of our first sessions and we have to apply to another charity to pay for the rest.

It all sounds pretty amazing and there is anecdotal evidence of real improvement for children after treatment. The big question of course is 'was it this that helped, or would they have improved anyway'? It's the 6 million dollar question, isn't it! Linda is completing a PhD on her technique which is due to be published and peer reviewed but this is the main problem with any therapy like this. You don't have a base group to compare findings against to be able isolate this therapy as being the cause of change. I do think that Seth is making enormous leaps forward at the moment. I think this is because of the epilepsy medicine either helping him to sleep and so giving him more energy in the day and/or calming his head so he can concentrate more. He's also loads more mobile; he uses his walker to get to and from the school bus and we try to walk with him round the house as much as possible. This is turn will be improving his lung capacity, blood and oxygen circulation and energy. We will just have to take note of where he is now, and again in 3 months and take a view whether this new therapy has caused improvements then.

On that note, I have 2 videos of Seth walking up and down our stairs to and from his bath. Unfortunately, I chose to wear a dress on this day and had to hitch it up to walk back down the stairs with Seth- I apologise now for the ungainly view of my legs you are forced to endure!

Anyway, I'm not advocating the Scotson Technique but it's worth checking out. Linda reckons that it is helpful to all children who were born with difficulties, can be started at any age and is also helpful for children with autism. After all this, on Friday we had the second day of our communication course. We practised using aided communication and discussed how we could use it and develop it with our children. Another useful day and by the end of this week my mind was blown and I was knackered.