Thursday, 14 August 2014

School Holidays Flying by.......

Well, I meant to update this again towards the end of our two weeks in Scotland, but as ever the days have flown by, and we have now been home the best part of two weeks.

Our time in Scotland was great! Because this was Daniel's third trip up to MP Fitness he very much knows what to expect now. Yes, we did have some tears, especially relating to his old foe, the treadmill, and he also started to get very tired towards the end. But he worked very hard and enjoyed himself, and as always, we saw a big leap forward in terms of progress.

Some action photos....









The major gains from the fortnight were that Daniel went to Scotland not having ever walked independently with his crutches, and now can. There's A LOT of practice needed, but we can certainly see the potential for this being a method of mobility for him in the long term. Although of course the crutches give him less support than the quad sticks (and much less than his walker) they will ultimately be much more flexible (the walker is of course big and bulky). They are also lighter than the quad sticks, and take up less space on the floor so he is less likely to kick them with his feet as he walks. So far, he is pretty good with the '1-2 - 3-4' pattern of walking (ie right stick, left foot, left stick, right foot), but the stiffness in his arms means he has a tendency to pull the crutches inwards, so keeping them apart and pushing them into the ground is the tricky bit.



The other massive leap forwards was in Daniel's independent walking! You may remember that Daniel only took his first ever controlled (balanced) independent steps in May, and his record before we went to Scotland was four steps. He repeatedly smashed that record while he was there, to the point where we stopped counting steps and started just focusing on quality!

This was one of his best. You can see Mike is tapping his hips to remind him which leg to lift next (and which way to transfer his weight - remember these things are not intuitive for Daniel - each move is considered) but he is not supporting him.  Because Daniel still has one side of his body that is weaker than the other, it means is is easier to transfer his weight to one side than the other. This means that unless he focuses, his steps can be of different lengths, because he is less confident to balance on his left leg while stepping with his right foot.  If one leg takes bigger steps than the other then you can't walk in a straight line! This was an attempt where he did manage good, equal steps with both feet. Annoyingly my phone decided its memory was full half way through and quit, so you are only getting about half what Daniel did, but you get the gist...



Along with the independent walking practice, came a bit of falling practice. If Daniel is ever to walk independently within his own home, even across a room, without someone being right behind him, he needs to learn to fall. At the moment he still falls like a log, and would hurt himself a lot, if not caught. He needs to learn to fall more effectively, and put his hands down. This is extremely difficult, because the spasticity in his arms means that the more anxious he is, the more his arms tighten inwards, rather than putting them outwards, for instance when falling. The beginning of getting used to falling was this, which fun as well...



Apart from the approximately four hour round trip to Perth every day, of course we still had time for some relaxation, and quality time with Grandma and Grandpa, during the few days they were with us. The first week the weather was hot, hot , hot (even in Scotland!) and one of the highlights was some water play in the garden one evening.....





...while Grandma and Grandpa did this......(to be fair, it was about the only time they had a chance to sit down while with us!)


So.....what have we been up to since getting home at the start of last week? Well, Lucy spent all of last week indulging her passion for dancing, on her summer school, which was her 'reward' for the amount of time she had to just 'fit in' around Daniel's timetable in Scotland. Meanwhile, Daniel has had around 5 hours with his private physio, plus more physio at home, as ever. His physio Jenny is keen to buid upon all the work from Scotland.



She is also focusing a lot of the need to dissociate his arms from what the rest of his body is doing (so they are not clutched against his chest when walking) and also the weight transference thing. That led to some exercises like this (where he has to transfer his weight from one foot to the other, squashing the air out of the thing he is standing on)....


....AND to Daniel riding a scooter for the first time in his life! This again is about putting his weight through one leg. He was more than a little bit pleased with himself!


He has discovered the delights of David Walliams' books for children (thanks to his friend Ieesha), and so there has been plenty of this going on as well.....


We have also had two appointments with the wheelchair repair service, one hospital appointment, one trip to Bristol for his splints to be adjusted, and various other fascinating activities along that sort of line.

Daniel has again shown some signs of the frustration he experienced last term. This of course is sad to see, but we know it is part of our job (and indeed everyone that works with Daniel) to help him work through this phase, hopefully towards acceptance of his condition and pride in himself. He has also expressed a real desire to be independent. To some degrees this is easier said than done, but the fact that he wants to do it is a big step, and we have stepped up our efforts to work on independence skills at home. More on that in a future post.

Only just over two weeks until school starts again - where on earth are the holidays going?