In the last couple of weeks we finally got our WAV! For those not accustomed to disability “speak”…Wheelchair Accesable Vehicle. We are finally free to do as we want, when we want, without having to take Jack’s wheelchair to pieces and lift him in and out of the car into (what is now) an outgrown car seat.
Not only am I totally cock-a-hoop about this, but Jack absolutely loves it! We have the choice of him being in between his brother and sister or at the back if we are using the extra removable chair. Jack is currently at the back as I haven’t yet attempted to move the removable chair. Will probably sort that out when we have sold our other car (which now must be a priority!). However, to see Jack’s face when he is in the car is wonderful. He’s no longer cramped into a seat that’s too small, he has tons of room back there and he LOVES it!
Paul, initially, pulled a few faces. This car doesn’t have a complex trip computer on as our old car does, and that’s got up his nose a bit….I suspect only because he can no longer spy on whether I have been driving the car “economically”. He had a few other niggles too, but to be honest I can’t remember what they are because I don’t care! We have freedom and that’s all that counts!
The school transport issue is still rumbling on. To be honest the stress of it has caused a lot of problems. I don’t feel that it’s my problem to sort out – therefore I could be seen as not being proactive enough in the matter….but I tell you what - I don’t give a fig. My son deserves the care that he has been denied. I suspect that the transport dept are going to try to push the issue of transporting Jack onto me from september. It would cause a lot less hassle. However, Matthew and Hannah’s schools won’t give me a parking permit, and I am damn sure I am not parking miles away and leaving Jack in the car unattended.
The official reason for Jack being refused a Continuing Healthcare Package is that his seizures currently respond to protocol. Meaning that Stesolid and oxygen work in bringing him out of the seizure. I find this appalling in the fact that the day that Jack “stops responding to protocol” will mostly likely mean that he will die.
I could appeal. Jack’s school wants me to appeal, but as I wasn’t the one who started all of this crap, I am not having anything else to do with it. The facts are:
a) Jack is legally entitled to an education.
b) The local authority are obliged to provide transport as stated on his statement of special educational need.
c) If I transport Jack to and from school, who is going to help me when Jack has a seizure in the car??? I am expected to deal with it myself! Well I have dealt with things by myself for long enough.
I don’t care who resolves this. Be it Continuing Healthcare, Social Services, Transport or Jack’s school, but I have enough on my plate to deal with without being actively involved in arguing over red tape!
And on that note – it’s time to get tea on the go!
xxxx
