Should we look for additional support for our 1 y/o? — Scope | Disability forum
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Should we look for additional support for our 1 y/o?

mansfield_bitter
mansfield_bitter Member Posts: 2 Listener
Hi all, 

My 12 month old son is likely to have CP, just waiting for a final sign off on the diagnosis. I've had a look around the site and forums quite a bit, there's been lots of great info which has really helped us process. I did want to ask a question though, or be told I'm over thinking it!

We've started some NHS physio sessions and (I think) we will end up with an occupational therapist too but we'd really like to know if there's any additional support that is worth requesting or even paying for? For example, is it worth getting some private physio sessions in as well as NHS? Are there any specialist centres or programs we could try out (we are in Manchester, but could travel)?

He's one of a set of twins so we sometimes struggle to give him regular help and exercise. Just having someone who can help out here and there would be useful but not sure what type of person we may need! 

Thanks!
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Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Hi @mansfield_bitter - & welcome to the community. Have you seen the CP info on the main site? Please see: https://www.scope.org.uk/advice-and-support/cerebral-palsy/
    May I ask how often your son is getting/going to get physio? As to getting additional private physio, personally I would discuss this with his current physio first, but your feelings about that may differ if he's not getting/going to be seen on a regular basis.
    I think your son is off to a good start, i.e. getting therapy, & most importantly having such a loving & caring parent..... remember as parents you are the most important part of the team! When you can, & don't beat yourself up when you can't, as I'm sure having twins must be exhausting, try doing any suggested exercises at home, but keep it fun; children learn through play. This may at this stage be the best thing. I speak as a long retired physio who specialised in treating babies & children with CP.
    There are specialist centres for children with CP. These would include the Bobath centres, but one's in Watford, just north of London, another in Cardiff, & one in Scotland.
    Scope also has some services that may be helpful, such as 'Navigate' & 'Parents Connect.' Please see: https://www.scope.org.uk/family-services/     Hope some of this helps.
  • mansfield_bitter
    mansfield_bitter Member Posts: 2 Listener
    Thanks @chiarieds, good thoughts. We have signed up to Navigate, sounds really useful! Looks like Bobath also do some baby groups so are going to attend some of them as well. There's a lot to take in so just trying make sense of it allat the moment.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 567 Pioneering
    Hi @mansfield_bitter

    I am glad you have found some of the suggestions provided useful. If you have any questions, need clarification or anything, or simply need a listening ear, we are here with you. We can see you are doing your best and care  :)
    I am a Scope volunteer. I have knowledge about the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    You're welcome @mansfield_bitter - we have heard such good things about 'Navigate' from other parents, so I'm pleased you've signed up for it. Please let us all know how you get on. :)
  • Tori_Scope
    Tori_Scope Posts: 6,620

    Scope community team

    @Jtregoning I thought you might be interested in this thread :) 
    Online Community Coordinator, she/her

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