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    spiritcharms's Avatar
    spiritcharms Posts: 230, Reputation: 30
    Full Member

    Oct 6, 2009, 03:17 PM
    My son has cerebral Palsy
    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.
    itsamor's Avatar
    itsamor Posts: 196, Reputation: 12
    Junior Member

    Oct 6, 2009, 04:57 PM

    Sorry about your son, I have a family member with the disease she's older than me though and doing fine they have a lovely program for her to go to in her town. I love the idea of your site. People really do need support
    spiritcharms's Avatar
    spiritcharms Posts: 230, Reputation: 30
    Full Member

    Oct 7, 2009, 03:10 AM

    Thank you itsamor for your post and the heads up x

    My son maybe going to a lovely charity place which deal with conductive education that helps children with neurological disorders such as cerebral palsy, brain damage and trauma. The place has an excellent reputation and was founded by a lady who's two sons have a rare life threatening genetic disease. People have started coming from all over the world to Rainbow House, children that were told they would never walk, talk, crawl, sit up have all been helped by this place and making excellent progress, able to walk, talk etc...

    still it's very emotional road and scary one at that not knowing what the future holds, that's why we have started this community.
    redhed35's Avatar
    redhed35 Posts: 4,221, Reputation: 1910
    Ultra Member

    Oct 7, 2009, 04:46 AM

    Hey spiritcharms,I think your site is a great idea.

    I work with adults with a variety of disabilities,including celebral palsy,most are on different parts of the scale... what I wanted to say was,they all are in paid employment and most are very independent,a lot of their parents thought that would never happen.

    I just wanted to give you a light at the end of the tunnel.
    spiritcharms's Avatar
    spiritcharms Posts: 230, Reputation: 30
    Full Member

    Oct 7, 2009, 08:10 AM

    Thank you redhed35 for the light at the end of the tunnel x I know that most do go to employment, that's why its so important they get the treatments and education and therapies at such a young age. Its sad when you get left to cope with it and not knowing the outcome. You really do have to fight tooth and nail these days to get adequate help.

    thanks once again and I hope that your post is seen by many, bless you. X

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