Joshua was brewing something all day, from waking up at 5am with me, when he was happy and lively and ate a couple of breakfasts! He started to stare towards the ceiling around 7.30 and so I wrote in the school diary that I expected a seizure at some point during the day. I was not too concerned as I was collecting him at 11 to take him to his neurology appointment, so he was only away from me for a couple of hours. He greeted me with a huge beam and a ‘mummy’ when I entered the classroom where it was snack time. But he threw his toast away and was raring to go- he would have been less keen if he had known where we were off to.
Joshua was very excited and sociable in the busy waiting room, trying out the pens and paper for colouring in and interacting with other parents and children. He browsed through the books on the shelf, but throwing a few on the floor he was clearly unimpressed by the Book Club. He was weighed and measured, then was ushered into the consulting room.This particular neurologist had not seen Joshua for around a year so she noticed a big change in him : she thought he looked much more grown up, he was busier than in the past – grabbing her pen and dotting on the notes and prescription was his favoutite activity, right under her nose – and he was more independently mobile too – getting out of his chair himself and walking around the room then trying to escape out of the door. In the end, I locked it so that I did not have to stand guard at the exit.
She wanted an update on his health generally, as well as his seizure activity. She used a well-used word that I keep hearing around school, ‘transition’; as she was already thinking of him being an adult and having to transfer from Children’s neurology and a Children’s epilepsy nurse to adult provision. She seems ahead of herself, as he has just had his 15th birthday, so there are three more years before he is adult, but I understand that, as things move so slowly, this is possibly a sensible approach. I explained that I hardly knew what I was doing next week let alone in three years’ time! The more professionals keep mentioning Transition, then eventally we will tackle the thorny issue of what to do when Joshua leaves 6th form and enters an adult world. They make it sound as though we have choices but I am fairly confident that for a young person of Joshua’s abilities and understanding, that his future options will be pretty limited in our area. He has had to travel over an hour for his latest respite provision into another Local Authority area and so I do not have high hopes for what will be available for him as a young adult, when his time comes.