4 year old coping

[Hecate123]

Hi, ( I'm new)

My son is 4 nearly 5 was diagnosed with RAF at 10 months. I've found doctors to be pretty useless and left us with 4 years of not much!

My son started school but has also realised he is "different" and it's really knocked his confidence. He is scared to talk to anyone but me about his seizures. I can't get through to him! If he has a seizure he freaks out about me telling his teacher...and begs me not to..it's heartbreaking

Any advice would be appreciated...I am struggling

[Duvetdaytoday]

I’m so sorry you are going through this. I have a. 9 year old with RAS who still had seizures so I get where you are coming from. My advice would be to share patient stories and the Jack has RAS stuff on the STARS website with him and maybe try and find example of people with disabilities who achieve amazing things so he knows he doesn’t need to be ashamed or feel different. My son has had a few seizures at school and his primary concern is always that he doesn’t want people to see, but actually his friends will always rush to his side if he gets hurt and will run for teachers if they are needed because they are worried about him and want him to be ok. I don’t know if you use Facebook at all but there is a STARS Support group on there and I’ve found them really helpful as it can be quite lonely to be an RAS mum. Agree that doctors are not very helpful! If it helps to reassure you my son manages a perfectly normal life despite his RAS and has became more confident in telling people about it over the years.