Friday, 3 October 2014

October already??....

It's been a VERY long time since I last managed to do an update, not for any reason other than the weeks fly by in a busy blur.

In late August we were lucky enough to spend four nights at The Calvert Trust on Exmoor. For those who have a member of their family with a disability this is an amazing place, and I would certainly recommend it! It runs activity holidays where the disabled and non-disabled members of the party are treated equally and take part in all the activities together.  This - the 'together' bit is far more of a big deal than it seems. It is obvious that many of the activities Lucy enjoys are not accessible to Daniel, but it is also true that Lucy is excluded from many of the 'special' activities that are put on for disabled children, for instance Riding for the Disabled, which Daniel enjoys on Sundays. Therefore, to see Daniel and Lucy (and indeed Rich and I) taking part in exactly the same activities, was just amazing. All the activities were accessible, using adapted equipment where necessary, for instance special harnesses for rope-based activities, a trigger-bow for archery etc. Needless to say, the whole centre was also wheelchair accessible, and Daniel really enjoyed being more independent in his wheelchair, saying "I'll meet you back at the room in a minute". As always, his self esteem was hugely boosted too by spending time with other people with disabilities.

Here are a few memories of an action-packed 3 days of activities....

And my absolute favourite video clip..... here's Daniel on the zip-wire (in the rain), having the time of his life!

Once we came back from holiday we were quickly back to school - Year 4 for Daniel and Year 2 for Lucy.

Daniel is busy with a similar routine to last year. His private physio sees him twice a week at school, and we do an hour of physio on Saturday and Sunday mornings at home. He also has swimming and horse riding. Daniel is very keen to be more independent, so we are also working lots on that, particularly dressing and undressing. He has been able to put t-shirts (both short and long-sleeved) on and off for a while now, but can now also get his underpants on and off. Here he is celebrating last weekend after getting out of bed himself, taking off his own pyjamas and putting on his own top and pants!! (He can't do his own trousers or socks yet but it seemed more appropriate to take the photo fully dressed, rather than just in his underwear!)

He also comes downstairs on his tummy, and we are waiting for some assistance from the Occupational Therapists (rather a long waiting list) to try to make our toilet adapted to help Daniel toilet himself a little bit more independently.

One final bit of BIG news - Daniel no longer has his wheelchair with him in school! He uses his walker all the time in the playground, and his TAs are just using his classroom chair (which admittedly does have wheels on the bottom) to move him around within the classroom and sometimes when a speedy move is required between lessons.  Of course, as you can see from the Calvert Trust photos, he still needs his wheelchair when out and about quite a lot of the time, but not having it in school is rather a milestone.

Finally, I wanted to mention the pupils of Glasshouses Primary in N Yorkshire. Daniel's third cousins Beth, Nell and Olli are pupils there. The whole school, inspired by Daniel's story have been inspired to help another little boy, named Sebastian, who lives locally to them, fundraise for his SDR operation. They have already held a non-uniform day for World CP Awareness Day this week, and one class's homework was to think of fundraising ideas! We are so touched that Daniel's story will hopefully be able to help another boy, who lives nearly 200 miles away!

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