Hi, my name is Sophie

SRose

My son has a rare condition called Dravet Syndrome. He is nearly 3 1/2 and finding he is well looked after in the healthcare side for his seizure control, but as a parent you get very little support in the development delay and SEN side if things that are very common in this syndrome. I’m joining communities such as this to help educate myself so I can fight for what He needs. And also hopefully help others! 

bg844

Hello @SRose
Welcome to the community. Please have a look at the Coffee Lounge and join in with the discussions.

Tori_Scope

A warm welcome to the community from me too @SRose It's great to have you on board!

You're not the first parent we've heard say that, so you're certainly not alone in feeling that the support in that area is lacking. I'm sorry it's something you're experiencing. 

You may be particularly interested in checking out the following categories:

• children, parents, and families
• education
• rare, invisible, and undiagnosed conditions

You may also be interested in visiting the following pages:

• Scope's family services
• Special Needs Jungle

What would you say the biggest barrier to getting your son the right support is at the moment?

Jo_2022

Hi Sophie @SRose! 👋 A friendly welcome to you on the community. Yes, it’s understandable that there is a lack of understanding and support for your son with SEN needs. We are here for you and it’s great that you are trying to help yourself. Take care 😊