Deakans body doesn't fit and convulse but his brain does instead

A few short week ago on the 17/7/2023 after 2 years of fighting the health system for answers we were finally given a diagnosis for my beautiful boy. For 2 years we have been told what he experiences is normal without any formal testing to finally have testing and find he has a rare epilepsy that's normally more common in girls called absence epilepsy! Deakan has gone from fully independent to needing 1 to 1 for many day to day tasks including crossing the road deakan has had multiple seizures in the middle of the road imagine going from being able to cross the road alone at a zebra crossing to needing mum to hold your hand at 8 years old!! he's no longer allowed to play futsal which he so dearly loved and is so good at he's not even allowed to bath/shower unsupervised due to the risk of seizure activity resulting in him drowning he's unable to swim anymore as I can't be in the water with him for swimming lessons due to conflicting schedules with my children so deakan misses learning life saving skills until alternatives can be arranged and it's really affecting him mentally in a big way and not just him but his younger siblings also as I am a solo mother this is a huge adjustment for all of us as I have now become a full time fully hands and eyes on carer and a mother of 3 and it's a juggling act Deakans siblings have had to adjust to less attention from me as I am required to supervise a majority of deakans daily activities and that's the part that's affecting deakan most!