Welcome to the UDGD Spot's Parent's Place!
A nice place to start
I am still throwing the basics of this site up, so please bear with me! I just managed to get the forum up - where people can communicate with each other, ask questions, and such. This forum is woefully empty at this time - but hopefully this will change soon!
I would like to start off by listing some very important links for parents of children with rare or undiagnosed genetic disorders - this is where you need to start.
You can find helpful links here - and please feel free to add your own site - or your own favorite resource!
I have begun to write out a bit of Tom's medical history - so if you're interested, just click here to find out what we know.
I have just opened a chat room at mIRC named #Undiagnosed_Disorders. I am in this room most every evening from around 7:00 pm to midnight Pacific Standard Time.
This room was located on dal.net, but because of dal.net's inconsistant performance I have moved the chat room to EFnet. When you open the mIRC chat program, just click on file, then options. A box will open up with a plethora of choices and settings - but all you need to do is change two settings and add our room, and I'll walk you right through it.
Where it reads IRC Network, just set it to "ALL". The setting below allows you to choose which server you want to use to connect with the chat room. It may sound complicated - but it's not. Just pick any one of the servers listed that start with the word EFnet and then click on the "Connect to IRC Server" button and wait a half minute or so. If you get no connection after a few tries just go back and select a different EFnet connection from the list mentioned above. It can be busy here at times so you might have to try once or twice to connect, but it's all worth the effort.
After you are connected (you will know when you see a flood of text across your screen about the server). Just run your mouse over the icons at the top of the screen - one will say "Channels Folder". Click on it and you will see a list of rooms - chat rooms that you can visit. Click on the "Add" button on the right side of this box to add the UDGD Chatroom to your list. The top line asks for the channel - #Undiagnosed_Disorders is the channel name, number symbol and all. The next line requests a password - leave it blank. Following line asks for site description - write whatever you please, or nothing at all. Then just click "Add" and it will be on your list of channels - or chat rooms. Anytime you want to drop in, just go to the list of chatrooms and select #Undiagnosed_Disorders to come visit!
If you need any help setting this up I will understand completely. I have been doing this computer stuff for a while and often forget the stuff that seems obvious to me. Just click here to ask for a hand!
I am in the process of setting up a web community (so people can make their own web pages here). I would hope that I am not the only person out here who would want to share pictures and stories of their special kid - and I think it makes people feel better when they see other families in similar situations.
This page will eventually provide a list of books for working with these wonderful kids, and I am sure more ideas will come to mind as I work on this!
Well, wish me luck! I hope to get everything up and running before
the end of March.