Cerebral Palsy
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Looking for advise on SLT for my 3 yr old with quad cp

welwynbabewelwynbabe Member Posts: 3 Listener
edited October 2017 in Cerebral Palsy
Hi, 
My son was diagnosed with severe quad CP last year and we have been trailing different methods of therapy in terms of physio. We now have a private physio that cones 2-3 times a week anund the improvement has been good. However my son is cognitively unaffected and very bright and we feel his lack of being able to communicate is effecting him. In the last three months he has learnt to shake his head for No, he can say Yeah and Go. He has also just learnt to sign finished and point to his mouth for food or drink. He tries so hard to communicate but our experience of SLT with NHS was not good all they were interested in was symbols which he isn't interested in using as it's a slow way of him communicating.  Does anyone have any experience or advise of how we can help with forming sounds? Sign language is limited due to his severe physical disabilities x

Replies

  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @welwynbabe

    Good mourning & a very big welcome to our online community.

    I do hope that we can help we can offer you some help and support ????

    I have attached you some info from our website please let me know if you have any probems,

    https://www.scope.org.uk/Support/Families/Diagnosis/Cerebral-palsy/Hemiplegic-CP
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Morning @welwynbabe,

    Thank you for getting in touch, I really hope you're able to pick up some useful hints and tips from other users. In the meantime, you might like to take a look at this resource about communication difficulties.

    Hope this helps and have a lovely day!
  • welwynbabewelwynbabe Member Posts: 3 Listener
    Thank you I will have a look 
  • forgoodnesssakeforgoodnesssake Member Posts: 354 Pioneering
    Hi, please also look here www.communicationmatters.org.uk and www.1voice.info
    These orgs offer info, support and resources for children and adults who use AAC (augmentative amd alternative communication).  Lots of people who use AAC have some speech but find that it is only understood by close family or poeple who know them really well and so they need a way to be understood by everyone.  I can see that your son is frustrated with being asked to use symbols as it is slower than speech; and if he has physical issues which make his hand use difficult then that makes that even tougher. 

    Can I just check that he was not being asked to use PECS (Picture Exchange Communication System)?  This is a system of symbol use which involves the child physically having to take a little card with a symbol on it and put it somewhere else and this system is intended for use by children with ASD  but not actual physical disability.  However I have unfortunately heard of it being used with kids with CP..which is totally ridiculous because of the physical effort involved.  Symbol use for kids with CP should be either on screen or low tec (paper or a book) and a way should be found for them to indicate their choice with as little effort as possible.

    My own son has no speech at all and so symbol use (and now spelling word prediction)  was the only way for him to communicate consistently (and he has just started at Newcastle University!)  Best wishes
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