International day of dance

This weekend we went camping. It wasn't wholly successful; we went to the Peak District and of course I've never been in the Peak District when it wasn't raining and it didn't disappoint.

We arrived quite late Friday evening, Seth was overtired and couldn't wind to sleep for hours. Then he woke up at 5 and I don't think he went back to sleep. So he spent the day very tired and grizzly, so much so that after tea time I was so worried about a terrible night that we packed up and came home. I don't know, given that all he wanted was sleep it might have been fine but I wasn't sorry to wake up in my own bed this morning.

Seth chills out in the tent

Despite how this sounds we actually had a fun time. The rain actually held off in the afternoon and we went into Bakewell. And that was when we discovered it was International Day of Dance. At least that's what the signs said and every corner we turned, there was different styles of music and random groups of people dancing. Naturally, Seth loved the music. The first group we encountered were line dancing, the second were swing dancing and the third were a group singing South African songs. Seth had a good bop and I found myself dancing my way round the town.

We haven't been put off camping. We've just learnt a few more lessons for next time. :)

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.

We went to the zoo

Last weekend we went to Whipsnade Zoo for their Special Kids day. It's discounted entry and they have speical events such as sensory story and singing hands. They've held a special kids day at London Zoo for several years and we went to it a couple of years ago but this was the first year they extended it to Whipsnade.

It was a lovely day. We started with a senosry story; the children sat on beanbags in a darkened room. Twinkly lights were hung around and a member of staff told a story of the rainforest and the different creatures that were there. Se and her colleagues walked around the children with different materials to simulate the different animals, butterfileds 'landed' on hands and as night fell in the story, the lights were dimmed and 'fireflies' appeared on the ceiling.

It was really well done and just at the right level for Seth. When it finished we made our way to the sea lions just in time for a show. Seth sat right at the front with other wheelchairs...and got soaked when the sea lions grabbed hoses in their mouths and sprayed the audience with water. Talk about a sensory experience! He seemed a little taken aback by the experience but otherwise was quite happy.

I think his favourite bit though was eating ice cream...it was very good ice cream! It was a really lovely day and I really hope they do it again next year.

Today for Fathers Day, Seth took Craig round Salcey Forest for a Grufallo Hunt. We saw owl and snake but managed to completely miss the Gruffalo! Not sure how that happened; presumably fox was there too. Still, a good exuse to go back....

Seth and I start talking to each other!

Yesterday Craig and I attended a course organised by the Speech & Language Therapists. There were a mix of parents, teachers and support workers. It was all day and there is a 2nd day, and a further morning in a couple of weeks.

What frustrates me the most at the moment is our inability to understand Seth's wishes. We interpret a lot of very subtle body language and so get by on that. However, he bangs his head a lot which I believe is often related to frustration at not being understand, and a much easier way of saying 'no', even though we don't actually know what he wants instead, or often even what he's actually saying 'no' to!

We've signed with Seth for years, tried objects of reference and switches but don't feel any of this is actually working. Seth's visual impairment doesn't help with this. Not knowing what he can actually see means we don't know what will work best for him. My goal for this course was to come away with a toolkit that will enable us to apply a consistent method of giving him choices that he can respond to. And I think we're going to get just that.

The morning of the course was spent watching a presentation on why communication is so important but an appreciation on why communication aids can be difficult and frustrating to use, there was some group discussion and we watched a couple of amazing videos of children and adults with no, or limited speech, who were using both low and high tech symbol boards to effectively communicate. It was very inspiring.

In the afternoon we discussed the 5 stages that our children progress through and the core language for each stage. For Seth, who is at stage 1, we simply need to start with the 'more' and 'stop' symbol. It could take months to get the hang of it but once he has we can expand the language and symbols. By the end of the course we will have created our own personalised boards to take home with us.

I have learnt that asking him questions isn't enough. I need to be continually commenting on his subtle body language telling him how I think he's responding to my question. I need to give him time to process my question. And then I need to continually point to the appropriate symbol. They called it 'modelling'. The idea is that, in time, Seth will understand the symbols and learn that if he eye points to them he will be able to clearly tell me what he wants. I'm quite excited about this. I knew all of this kind of before but I've now had a step by step instruction on how to do it. Today we have already started. We didn't have the symbols with us but I kept up that commentary, asking him a question and then saying 'I think that you want....' and things like that. Normally I would still read that body language but by voicing it back to Seth I was telling him that I understand what he was 'saying'. I really felt a difference and he seemed a lot more relaxed. I also noticed a lot more than I would have before, I think.  So I asked him a question and he tapped his foot and I read that as a response, rather than just a random movement. So I told him that I thought he was saying 'yes' and he laughed. It made me aware that he was communicating to me a lot more than I had ever realised which really is very exciting.