My 2 year old with CP doesn’t understand he has arms — Scope | Disability forum
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My 2 year old with CP doesn’t understand he has arms

pszaf27
pszaf27 Community member Posts: 3 Listener
Hi everyone,

I was wondering if anyone had a similar challenge with their child suffering from CP. My nearly 2 year old has been diagnosed earlier this year with spastic quadriplegia and has been given loads of support from the NHS but they mostly focus on his hips and legs, however I am mostly concerned he has yet to use his hands. He doesn’t reach for toys or food, he constantly puts both of his hands to his mouth and when we try to guide him to grab a toy / snack, he tenses up, pulls away and clearly gets frustrated. I would love to hear from anyone who’s experienced anything similar and could give us tips on how to help him understand he’s got two hands attached to his body that he can control and use? 

Thank you

Comments

  • atlas47
    atlas47 Community member Posts: 238 Pioneering
    Hi @pszaf27

    I have tagged @Richard_Scope, who is the lead on CP keep an eye out for him.

    You could also try the Online Cafe about CP, to the right in green letters.

    Best wishes
  • pszaf27
    pszaf27 Community member Posts: 3 Listener
    Hi @atlas47,

    Thanks! I will keep and eye out and have a look at the cafe forum too! :smile:
  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @pszaf27
                          Welcome to the community and thank you for joining us. How are you? Firstly, I am pleased to hear that the NHS are supporting your son however I can understand your concern regarding your son's arms. I have Cerebral Palsy, though a different type to the one that your son has, and I know that when I was younger I used to have to do lots of exercises to build up the strength and use of my arms. I feel though our Specialist Information Officer @Richard_Scope will be better placed to offer you advice, I will let him know and I am sure he will answer. I'm sorry that I am unable to be of any help and hope you are able to get some advice. Thank you and best wishes. 
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @pszaf27
    great to meet you! Thanks to @atlas47 and @WestHam06 for tagging me into the conversation.
    I live with quadriplegic CP too and I can relate to what you describing with your son. Gentle stretches are very useful for helping to create muscle memory through the repetition of movement. This will be something that the physiotherapists should move on to and something that you can continue to do at home.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • pszaf27
    pszaf27 Community member Posts: 3 Listener
    Hiya,

    Thanks @WestHam06 for your reply!
    Thank you @Richard_Scope! We try to do stretches with him every day but whenever we touch his arms he pulls away nearly immediately as if he was scarred or uncomfortable ?
    For weeks I was worried he was in pain but he recently started to crawl and he can also do weight bearing on this legs while resting his hands on the sofa so I’m guessing it can’t hurt him if he happily does all this? 
    It’s like he doesn’t know the hands are his?‍♀️
    I really appreciate you sharing your knowledge and experience with us so thank you ☺️
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    It's about going gently but persevering with the stretches. He may not want to do them!
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 

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