It is something universally hated by all SEN parents – from the joys of badgering school/council etc to get the right forms out to the right people on time, to the moment when you actually do say “you have got to be joking” down the phone to a harassed, innocent individual from the Council transport team who has drawn the short straw of having to tell yet another parents that they can’t find a suitable escort for their child. Trust me, you are not alone in this. We knew early on that Sam’s seizures meant he would be far better placed in a SEN environment where the impact of his seizures was understood and the relevant support was in place with a 1:1 (that, dear reader, is a post for another day).
We started the process in April 2014, ready for him starting school full time in September. First nightmare; getting school to fill in the cursed discretionary funding form and getting it BACK to the right lady in the council. By the end of the summer term, school closed and still no form had arrived at the council. By August, with my return to full-time work imminent, let us just say stress levels were stratospheric … the phone was going off every other hour as I tried, together with the SEN and assessments team at the council, to find a way around the lack of form… eventually and by the grace of God, funding was approved and the search for an escort could begin…. Ah, escorts. We foolishly thought they’d find one in no time. Wrong again.
Some of the issues we discovered are:
1. None of the escorts are trained in how to recognise/deal with seizures – quite an issue when around 1/3 of their passengers are likely to have seizures as part of their condition.
2. In the school transport provided, there is one escort for maybe 2-3 children; all with differing issues/needs which could be physical, behavioural, or a.n.other.
3. In the event of a seizure, policy is to pull over and call an ambulance; said child is then transferred to ambulance and sent off to hospital while the others go on to school. Alone. Sam is non-verbal, like Hell am I going to allow this to happen.
4. And my favourite – the transport taxis are not allowed to carry more than 1 oxygen cylinder…. which meant that if there were more than two children on the taxi who carry oxygen, one would have to go to school without it. Genius. My favourite suggestion was that the four children in Sams nursery class who all had uncontrolled epilepsy could share a taxi together.
See points 1, 3 and 4 above.
Once I’d finished laughing hysterically and could actually get the words out, I explained as gently as possible why this would be a very, very bad idea indeed. As a rule in one child starts to have a seizure, another will follow suit – it’s as if they don’t want to be left out – then the others may join in too.
You see, for reasons unknown to the world of medicine, children with epilepsy seem to spark seizure off in each other; whether it’s the stress/anxiety that comes from the carers that tips them over, we don’t know.
But any SEN teacher will tell you that it happens.
So. Here we were half way through September with no transport sorted. Both Sam’s Dad and I were working full-time so it was a bit of a nightmare. Eventually, Jonathan’s Mum stepped in as an escort and at last, Sam could get into school! Not everyone is so lucky – J’s parents only live 15 minutes away from us, and his Dad gives him a lift to work every day as they work in the same place.
So if you’re going through the turmoil of trying at arrange transport, my one piece of advice is to keep on at them! You’ll get there, eventually, but be prepared for a few more grey hairs by the end of it all x