In March 09′ I created “Loving Simone” as a way to reach out to others who may be struggling with the same types of health and neurological issues Simmi is faced with. I also joined several different message boards, groups, listserv’s, as well as social networks trying to get a handle on what was happening to Simone. What I found were some of the most generous and beautiful families struggling to give their disabled children a better life. What I also discovered was that all of us are so scattered across the internet in little micro groups and categories without any place to connect us all.
There are parents out there that may have children suffering with a single food allergy and others on the other end of the spectrum holding on for dear life as their child struggles to live just one more day. No matter how mild or severe the problems are, we need to gather strength from one another and blaze forward in search of the answers that we seek. I believe that The Sensitive Souls Network can be a tool in connecting us with one another easily. I created this Network to be a stepping stone to providing a better quality of life not only for my own grand daughter, but also for all children suffering with a disability.
Reaching out to parents who may have a child with problems but is undiagnosed is another important goal that is very close to my heart. Parents often feel very alone as they take their child from one doctor to the next trying to figure out what is wrong with him or her. It’s frustrating to say the least, and when a child doesn’t fit into any one diagnosis OR has multiple unrelated health problems, parents can feel “left for dead.” I want this Network to be a place of comfort as well as a way to receive much needed resources, wisdom from experienced parents, and a place to grieve if necessary.
I was going to wait till the new year to launch The Sensitive Souls Network, but as I thought about it, I realized that this Network will always be a work in progress with new things to be added daily. The site is kind of empty right now and I still have a lot of resources and information to add, but I would like to open it up and invite you all to become members. Its free to join.
Here are some of the features I put in place, and there are more to come in the future:
- Personal profile page- You can set up your profile to let others know who you and your child are
- Blog- Blog as little or as much as you’d like. The thing I love about this feature is that it can help chronicle your life and keep everyone updated about how your child is doing (or you). I’m a part of a few different message boards, and when others inquire about Simmi, it can become frustrating to try and retell a story over and over. With your own blog on the Network, you’ll be able to write it once and then refer others to your blog about what’s happening so you won’t have to retell a story multiple times.
- Groups- You’ll be able to create your own groups and/or join an existing group.
- Forum- I’ll be adding the Forum in the next few weeks
- Video chat- You can start a private video chat with other members or simply instant message them
- Add photos and videos
Here are some things still to come and in the works:
- Resources
- Main chat room
- Facebook application- you’ll be able to keep your peeps on Facebook up to date with your latest blogs as well as signing in to the Network through Facebook
- Lots more!
As I said earlier, the Network is a work in progress. I value feedback and suggestions! If you have a link, resources or information that you feel would help add to the site, leave a comment on my profile page or send me a private message there.
http://www.sensitivesoulsnetwork.com
Thanks for reading!
Tags: families with disabilities, social network, The Sensitive Souls Network
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