Hi all,
I have a nearly two year old son, my only child. He has just been diagnosed with celebral palsy. He's the love of my life and I love him to bits. We, my partner and I are finding it very hard coping with all the emotions and physical demands of looking after our son, but we do everything we can. We have just been told that his hip ball is coming away from the socket on one side, so his pelvis is tilted. He may need a hip operation in 6 months time if we don't correct it by constant physio and excersises. Physio here is vertually non exsistant! So we are trying to get him into a charity place that uses conductive education, who hopefully will beable to help, it means me and my son being away from his dad for 6 months or so, but you have to do what you have to do, especially for your children.
Anyway, in view of all this going on, we have concerns, insecurties just like any parent would, but with the extra concerns of ongoing assessments and appointments and being mentally and emotionally drained.
We, well my partner has decided to build a community support network and forum for parents,grandparents,family,friends or people with disabilities as we understand there is a desperate need for people coping with this in their life, to beable to connect, talk to each other about their concerns, worries or just friendly chat etc, whatever helps you to cope. We just wqnt to let people know that they are not alone and they do have somewhere to connect where they won't be ignored or possibly even scrutinized.
If you know of anyone struggling with disabilities themselves or a family member,friend etc that could use the help and support and have a caring friendly place where they feel they would benefit by getting advice, or even giving advice for people in a similar boat, then I hope you don't mind me giving the link to it here,it's for a very good cause. :)
Here's our blog, you can get to the forum and community through our blog. Click link below.
Building a better future, support for families dealing with disabililty.