Julie Noted

Not a bad start to the day. Getting Cam ready in time for the school bus can be ….. challenging!

This morning’s agenda includes a trip to Cam’s school for an appointment with the Community Paediatrician. Same person that does the school medical which sounds like a good idea but are really a chance to catch up on what else has been happening, what other doctors or professionals we have seen etc. Not a complete waste of time although this opinion can change if they are running late and it has a knock on effect on me having to make more time up at work than I should have had to! Still at least this CP is more helpful than the last. Not even going to go there today however will mention that I have previously indicated the main school nurse is to be excluded from these meetings as she is a waste of space. Now that is a whole other blog itself which would get contributions from many of the school parents that I know and probably from some I don’t know.

That’s one of the big differences when your child goes to a Special Needs School as they are usually transported by a bus which means no school gate mums! You don’t get to meet the parents ‘naturally’ who may well be in a similar situation to you. I am trying to remember how I first got to know some of the other parents, some of whom are now very good friends. I think it was the Head Teacher who first put two of us together to help on the PTA. From there I have met some fantastic people although as the years have progressed I have realised that there is no one with a child at that school who is in a similar situation to me/us. This is partly due to the most basic fact that everyone is different and this is no different for our kids. However due to the number & complexity of Cam’s problems, he is truly a force to be reckoned with and having visited other families over the years it is slowly dawning on me that Cam is somewhat of an extreme example and bloody severe in every aspect. There is no respite from Cameron really – yes even when he goes away! – because that just gives you time to check prescriptions, medical supplies,  nappies and generally catch up on all the stuff you can’t do while he is around. Especially as he now requires two people for his care , it is very difficult for instance to get anything done without being interrupted after 5 mins to assist with some nappy change, manoeuvre or other issue. As he is now physically hard work it is difficult to take him out and so very frustrating to have a weekend at home yet not achieve anything – admittedly part of this can be due to apathy because of what else is happening in the house.

When other parents of special needs kids tell you “We wouldn’t want to be in your shoes” or ” I don’t know how you cope” you know you are in trouble. That and probably a little bit crazy, especially after all these years!