As I
mentioned in my previous post (Just when you start to relax), we got a call
from Julian’s high school last week and were told by the Year 8 co-ordinator
that his teachers’ had expressed their concern about how constantly tired
he is in class. The outcome from that was the dropping of two of
his subjects, which starts this week - half days on Tuesday afternoons and Wednesday
mornings.
Last
Thursday came with another good result, with the Physiotherapist attached the
Pulmonary Hypertension clinic, and the school/community physio attached to the
hospital both coming up to Julian’s high school to do a review and help both us
and the school work out a ‘program’ I guess, to safely get Julian out of his
wheelchair at school more and more until – fingers crossed – it will only be at
school for the inevitable so-so health day. This meeting came about after
my ‘Stand your ground’ post, which spoke about how Nigel and I were pushed to
have Julian out of his wheelchair at school, despite no one from the clinic
ever having actually attending his school to see how viable that was. We
had had no support, nor advice on what we should be doing or how this should
happen, and the end result was that Julian’s health started to decline almost
immediately, and we made an ‘executive decision’ along with support and advice
from his GP to have him back in his wheelchair again until someone could assess
the school.
Well,
both physios were in agreement when it came to the size of the school.
One actually used the word ‘sprawling’! After a walk of one of Julian’s
busiest school days and a very long meeting (thank you so much to the Year 8
co-ordinator for her patience during this time!), we established a plan to –
slowly – get Julian out of wheelchair at school, and unlike the demands from
the clinic, the physios have put together a plan to gradually ease him out of
such a high need to use it. We’ll be starting with one of his half days,
where he has just one double-period, walking next to his wheelchair while one
of his mates pushes it up to the eating areas and back again. The physio
will be presenting her suggestions at the next clinic (next week) to have it
approved by his cardiologist before it’s implemented at the school.
Keep
your fingers crossed they agree to this and don’t try to push it further!
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