Any experience, info, advice, suggestions etc besides posting lists to websites i've already read a million times? Like things you didn't know or things you wish you knew before hand. Much like, when you have a kid for the first time, after the kid is born you go "ohhhh, i didnt think of that" or " ohhhh i wish i'd have known that before hand" etc. That sort of thing but applied to a child with hydrocephalus?
Amanda
That's a really BIG question. I have a 12 year old daughter with hydrocephalus and I wouldn't know where to start...unless you asked me specific questions or gave me a topic to talk about. I now work for the Hydrocephalus Association and there are great fact sheets about learning disabilities, social challenges, etc. Great video on our YouTube station from a senior in high school. But, I think the best place to get that kind of feedback is to read our Facebook page where people are throwing things out there all the time (and you can, too) and/or joining one of the closed support group pages where you get the benefit of the same conversations but with people that you may be able to meet. If you ever want to chat about an area you're interested in or concerned about, feel free to give me a call or shoot me an email. My information is on our website.