Lennox Gastaut?

Hi ... I'm searching for answers -- like we all are -- and finding none that satisfy the need to know. I guess It's the answer to "WHY" I'm still searching for. I'm finding it frustrating finding answers and even "what to expect" to a syndrome that people have NO clue what you are talking about. My son, Wade, has just turned 5. From the time he was a baby - we "knew" something was wrong but kept being pushed off by the medical system -- saying he was passive; that the older kids were waiting on him so why should he try. Finally -- when he was three we were referred to the children's clinic (I think just to shut me up) -- they diagnosed him as developmentally delayed. 10mths later, his eyes started to flutter or roll back. We were put on waiting lists for EEG's and MRI's. 3 months later, he started having drop seizures -- and it wasn't until they weren't stopping & a trip to the emergency room that we got some action. 10mths after that we finally got to see a neurologist -- where he was diagnosed as Lennox Gastaut. That was this past Sept. Wade is a very active, happy, mischievous little boy. His is non verbal; and yes delayed but slowly moving forward. My life has become so absorbed looking for answers and trying to get the school system ready for his entry in the fall - I have neglected my other three kids. Wade has autistic tendencies - so transitions and overstimulating environments are a challenge. Are there any other parents of kids with Lennox in here?? I'd love to hear how you cope.