The most important thing I can say to someone who has just received a diagnosis — any diagnosis, for them, their child, whoever — is to find and connect with people going through the same thing. The Internet Age is a wondrous thing — even people with extraordinarily rare circumstances can find each other, console each other and laugh together.
No one knows this better than me — who, with nothing more than a laptop and a dream, has cobbled together an ever-growing group of parents of multiples with cerebral palsy. I originally tried to get them together on my too-cleverly titled FOR(m)UM (get it? A forum? For mum?) but that didn't work as well as I'd hoped. Plenty of people introduced themselves but the notification system was poor and even I had no idea when someone had asked a question or posed a problem.
So, I did what everybody seems to be doing these days: I moved it to Facebook! Oh, so much better. I'm a bit of a Facebook nut, so this is working much better. I love the dialogues about stroller options for so many little ones who can't walk and the support we offer each other after a particularly hard day.
If you are a parent of a multiple (or two or three...) with cerebral palsy, please request to join us at: https://www.facebook.com/groups/174459189319732/ (This group is closed so we can talk amongst ourselves; another benefit over the old public FOR(m)UM. HOWEVER: This means that you need to request to join it through me directly and be prepared to answer a few questions about your child. Message me through Facebook.)
Another passion of mine is the Anat Baniel Method, Malachi's primary form of therapy. I started a Facebook group for parents of children who are getting ABM lessons so we could share our success stories, our tips and our real-world applications of the method, which differs greatly from traditional physical therapy. This group has really taken off and I'm so pleased. This group is open, so if you're just curious, you can read our discussions there. Otherwise, if you want to join, by all means request it: https://www.facebook.com/groups/172740526149963/
I've also recently gotten into Pinterest. I have a board for cerebral palsy products,cerebral palsy services and inspirational stories. If you're on Pinterest, let's connect! http://pinterest.com/shastakm/
And of course there's always Twitter and my Facebook page.
That's everything, right? Whew!
(This page was originally published as a post at Are we connected?)