Sunday, 11 May 2014

Another little sprinkle of magic.....

We have been home three weeks now, and trying to establish our new routine. As expected we are struggling to increase the amount of physio we do at home, but we have shifted the focus of our long weekend home sessions, to concentrate on hip stability and the excercises suggested by the team in St Louis. We also continue to do stretching, standing frame, walking practice etc every day. We would like it to be more, but that's all we can manage right now.

Meanwhile, in school, Daniel continues to have one hour sessions with his private physio on two days each week, and on the other three days, his TAs do a mini session of 15-20 minutes with him. He is wearing long splints for half the day and short for the other half.

One of the main issues that has started to become apparent over the course of this academic year has been that is now becoming too difficult to integrate Daniel into mainstream PE / Games lessons. When he was in the infants, he was able to take part in activities, pushed in his wheelchair by the TA. However, as the other children start to learn 'proper sports', like rugby, hockey etc it is simply too difficult for Daniel to be included, in the true sense of the word. What I mean is that Daniel can be present in the lesson, ie not excluded, but he simply does not have the gross or fine motor skills to be part of the game. He gains very little from the experience - his poor TA does a lot of running around, while having to protect the safety of both Daniel and the other children, and her reward at the end of the session is a very muddy wheelchair, which she then spends twenty minutes brushing off before she or Daniel can re-enter the school building.

Even swimming, which Daniel loves at home, has proved to be frustrating for him when trying to keep up in a 'mainstream' swimming lesson with schoolfriends.

So, we have decided that from September, Daniel will be withdrawn from PE and Games sessions. If possible, his physiotherapy will take place then. If not, we will consider taking him out of school at those times to do exercise more suitable for him.

It is worth pointing out that these issues with inclusion are not due to any lack of effort on the part of the school. In fact, as a result of some of these problems (which came particularly to a head over a lunchtime compulsory Dodgeball activity - a game for which Daniel has neither the strength to throw well enough, nor the ability to move to avoid being hit), one afternoon the Advisory Teaching Service came in and taught Daniel's whole class 'New Age Curling' (sort of curling without the ice!) Not only did Daniel come home saying he had "the most awesome day ever", but it was touching that at the end of the session, when the teacher asked the children if any of them would like to miss dodgeball the next week and try Boccia (which you may remember from the Paralympics) instead, almost the whole class put up their hands!

There are still some physical activities in which Daniel can take part, as long as he has sufficient adult support. This was him at a friend's rock climbing party a couple of weeks ago. It took the support of 2-3 adults at any one time, and he couldn't climb any higher than I could reach to place his feet, but he had a fabulous time!

He also still enjoys riding his trike. Last weekend we went for a lovely ride to the park. The sunny weather meant the ground was mainly dry, but Daniel did manage to find this muddy puddle, which he just sat in for ages and refused to move.

During the home physio session last weekend, we discovered that Daniel's independent standing practice was much better to music. It means he does not 'fix' in an abnormal position, but relaxes and dances, and this dynamic standing is much better for building his stamina and balance. He loves it too....

You will see he is wearing both his tall splints, and his lycra suit, to give better alignment. You can also see how close Rich is, because although Daniel is very steady for ages, if he falls forwards he falls like a log and he doesn't need to lose any more teeth!

And, having done a bit of dancing, Daniel stunned us, by taking his very first controlled INDEPENDENT STEPS!!!!! You may remember he managed some 'falling steps' with Mike Poole, back in the autumn, but here he actually balanced in between. Like this....

AND ..... it wasn't just a one off. There was this.....

And this.....

And this....

 And more! (But I won't bore you by posting each and every one!)

You see what I mean by falling like a log? Lucy learned that where she was lying in that last clip was maybe not the best place!

It's a funny feeling - both Rich and I thought we would never see Daniel take independent steps,  and it was just incredible. It's the times like those which buoy us up and keep us all working at the physio on those days when we just can't face it.

Of course, that's not to say that our physio sessions are all smiles and achievement! Sometimes Daniel just isn't in the zone, for whatever reason, and a lot more nagging, cajoling and even threats are involved, as well as some sessions taking ages because of how much time we waste while he messes around procrastinating!

In other news.....Daniel is in this week's edition of Take a Break magazine. ..

The article claims to have been written by wasn't! A certain amount of artistic licence has been taken, but in essence the story is right, and the money paid to us by the magazine will go towards Daniel's ongoing physiotherapy.

So, three weeks ago today we arrived back from St Louis. It seems like a lot has happened since then. I thought I would finish with this last photo, so ordinary in many ways, but for me my first ever photo of my two children standing up side by side, and unsupported.