Sam has been at the same fabulous, specialist PMLD school for almost 5yrs.
It’s about 1hr’s drive from home and he has always been taken to school and brought home by a wheelchair-adapted taxi.
I can’t even begin to explain how much that hurts.
I always hoped that we’d still be able to take him to school, that it would be one ‘normal’ parenthood experience we could still have, but it wasn’t to be.
One of the most frightening aspects of sending my baby off in a taxi is that while he has a wonderful passenger assistant and driver, they are not legally permitted to give him any medical attention in the event of a seizure.
Given that Sam has around 6-10 seizures daily, it’s almost guaranteed that he WILL have some in the taxi.
Most are milder, short lived. But some are the life-threatening tonic clonics that stop him breathing, cause him to vomit and be at a high risk of complications such as choking or aspiration.
Sam carries oxygen with him at all times, a suction machine to help keep his mouth/nose clear of any blockages and when with us he also carries his emergency medication which can be used to stop one of these major seizures in its tracks.
However, neither his driver nor PA are allowed to use any of these.
And that’s where the problem comes.
After a couple of particularly aggressive seizures at school, funding for a medically trained attendant to travel with him was requested.
And almost as quickly refused; there simply wasn’t anyone suitable.
So it was quite a shock when on the first day back at school an ambulance pulled up outside our house and for us to be told that they would be taking our boy to and from school for the next 6 weeks.
We hadn’t been informed, neither had the taxi company who had also just turned up to collect him.
Everyone had expected someone else to tell us.
In the middle of this communications breakdown was an 8 year old child, confused by the sudden change, upset that his much-loved PA wasn’t there, and his wrung-out parents; distressed beyond words that their baby was deemed fragile enough to be taken to school by ambulance.
It has taken a week of phone calls to sort and to put more suitable arrangements in place.
I think we can safely say that this is not how I thought motherhood would be.