Hi all. It helps me reading these posts to keep positive myself.
We live in Pretoria. My son Erick has epilepsy since 11 years of age. He is now 19. The past 8 years have been very difficult for him and hard on us as a family, being in a special school for persons with learning difficulty, going through puberty, being withdrawn from society due to MY fears of my son having a seizure and so on and so on. I think we as parents with epilepsy children have the most fears. Fear of losing your child, fear of inability to reaching their dreams, fear of rejection by others, the list goes on. he always got upset with me if I take him somewhere and before I leave explain to everyone what to do in the event of a seizure, he didn't want people to know, he was embarrassed about the seizures. So I explained to him that people need to be made aware of what to do, not just for him but also maybe for someone they might get to know in a similar situation. His brother have always been his guardian angel since the first seizure, yet he always fights with him, but still love each other.
Epilepsy has always been the "excuse" for my fears. I have made peace with the fact that he has epilepsy but very difficult to accept certain conditions (possible sudden death, brain dysfunction etc). His dream is to one day have his own car and drive it, having a family. He did not complete school and always stayed home feeling sorry for himself. He had mood swings, constant anger and behavioral issues. Partly due to his medication.
To place the cherry on the cake, we have recently been advised that he is having epilepsy seizures due to another condition he has had since birth, autism. If only I have known the symptoms for autism, I probably would have picked this up earlier, but I never knew. Can you believe it, it took 19 years to come to this realization. He started speaking only after 3 years of age, I was always told by doctors and clinics that it was due to his over-sized tonsils, had learning difficulty since pre-primary, seen many psychologists and therapists and no one has ever picked it up. His new psychologist has done the effort to going through all his previous doctors and school reports.
I have done lots of research and every time I learned something new I would discuss it with him. I came into contact with other parents with epilepsy young adults for guidance on how to better his situation. As we got news from other parents, I shared it with him and he started getting excited. But he was still "jailed" at home with epilepsy, not living his life, not interested in sport, just online PC gaming kept him busy and the PC gaming I can tell you was not good for him and his epilepsy either.
He was offered a work in February and have since he started only had 2 seizures. Luckily the people at work knows and understand his condition and are very helpful. His overall outlook on life has changed, now he is not 'disabled' anymore. The new psychologist has him on treatment now and it appears to be going better now.
Hope my story helps someone else to hang in there. Do your research, discuss it with your teenager / young adult, get into contact with others with similar difficulties, get them out there in the world, they need to live a life, so do we as parents. My children always say YOLO (You Only Live Once). Yes, we as parents will always worry, but don't we always worry about our children, with or without epilepsy.
Hope you have a super day.