Parents, carers and disabled parents
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Feeling lost and confused

Rayche45Rayche45 Member Posts: 8 Listener
Hi there, 
My twin boy Ted had been diagnosed with CP hemiplegia of the right side. He's 2 next month 

I've spent so many nights researching I feel like I'm my own doctor but I just feel so let down that I'm having to find out information myself. 
Should I not have been told about Dla and support groups? How do I know where I can get help. 

I've literally been told he has Hemiplegia and that's it........ I want to do my best here but I have no idea who to go to and how to start moaning to?? 

He have physio once a week but she seems a bit new and won't really offer advice. 
Ted cannot walk and I feel like he'd benefit from a splint AND/OR a walking frame but that idea was turned over by his physio saying he was to young.... Surely the younger than better???? 

Any help would be greatly appreciated and if anyone can point me in the right direction thanks.  (I've been on Hemi help which has been a great help) 

A lost a confused parent  xx

Replies

  • americanabroadamericanabroad Member Posts: 11 Courageous
    Hi there,
    It really is a bewildering start to a rollercoaster journey for you!  We got a lot of advice and support from Scope, who came and did a home visit for us.  We also had a lot of help from our portage worker.  She introduced us to different services that were available, helped us apply for DLA and my son's EHCP, and supported us as we looked for his nursery.  Do you know if there is one available in your area?  You should check in your borough or ask your PT if one is available.  My son doesn't walk either and they didn't suggest a walker for him until he was around 2 1/2 or 3.  

    I hope that helps.  Remember, you're not alone!
  • [Deleted User][Deleted User] Posts: 740 Listener
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  • Rayche45Rayche45 Member Posts: 8 Listener
    @americanabroad can anyone arrange a home visit? That would be something that would be of great help just to see what I can do to help him out. The health visitor is pretty useless and his consultants just say it's not there area. As @DannyMoore  says its all in funding cuts so now we are left to find everything out ourselves. And with both of us working full time to pay the bills it's so hard to spend every evening on the Internet. 
    Scope has already helped me release I can claim Dla just filled in the forms. (otherwise I would have never of thought of it) 
    I'm. Also looking in private physiotherapy sessions as I feel he may benefit from a more at home environment.. It's amazing how we are entering a completely new world of wonders 
  • Rayche45Rayche45 Member Posts: 8 Listener
    Never knew what a portage worker was until now. Just been looking it up. Is this something I can look at now or for a few years on? 
  • AlexAlex Scope Posts: 1,324 Pioneering
    Hi @Rayche45

    I'm afraid Scope don't offer home visits anymore, but we have lots of information that might be able to help.

    You may have discovered our information content and our helpline (08088003333). We also have a wonderful service which connects parents -  it's available online everywhere and in certain areas in real life.

    Hope that helps.
  • ACPLACPL Member Posts: 4 Listener
    Hi Rayche45, 

    sorry to hear that you are struggling and overwhelmed by the whole situation . I'm happy to help you with specific exercise program for him if I get more information about him . Hemiplegic children do really well with intensive physiotherapy and occupational therapy if needed . They could achieve a near normal life if the intervention started early and done regularly. Intensify his physio or learn the exercises and do them at home . ( happy to help you with guidance for exercises) first thing first , start off with the stretches for his arm and leg ( please learn how to stretch him from the physio) and don't forget to do it everyday . The stretches make it easier for him to move his arm and leg . Learn the weight bearing exercises and do it regularly. 
  • StayceStayce Member Posts: 681 Pioneering
    Hi Rayche45

    Hemihelp have a DVD "my moves" which will help with exercises that you could do at home

    http://www.hemihelp.org.uk/support_us/shop/my_moves_exercises_children_hemiplegia

    Hope this is helpful

     Best wishes 
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