Cerebral Palsy
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Anger, Frustration and Sadness

hayley564564hayley564564 Member Posts: 6 Listener
Just wondering if anyone has any advice or thoughts on how to deal best with my 8 year old son who has quad CP and dystonia and his feelings.  Cognitively he is like his peers....he has very limited mobility and is powerchair dependant with hoisting etc at all times.  He often becomes (quite understandably) frustrated and upset.  Do any of the slightly older members or other parents have experience of this kind of thing and did anything help at all?

Replies

  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    Hello, again @hayley564564,
    I didn't introduce myself on your other post. I'm the CP Officer for Scope and I have quad CP too. I was around 7 years old when it dawned on me that I was different from the other kids that I knew and my younger siblings. I can remember the feelings of frustration and anger that I felt seeing kids younger than me doing things that I wanted to do. That said though it was also frustration at my own body and the fact that one day I could do something fairly well and the next I couldn't, because of spasms and the like.
    I saw an educational psychologist at age 8 to help work through some of the anger and frustrations that I felt. It was helpful just speaking to somebody that wasn't family. I was very aware of the guilt that my mum carried (and still does) about my CP, so I didn't want to make her feel worse. Plus mum had other children to care for. 

    Here are some resources that might help:
    Scope's Mindful Monsters
    YoungMinds
    Educational Psychology Suffolk Council

    This is also a great resource if you have other children:
    YoungSibs for Brothers and Sisters

    I would just say that all you can do is help to provide your son with the tools to come to terms with himself, which he will eventually, in his own time. Try to remember the anger he is demonstrating isn't at you, even though it feels like it. We always fire off at those closest to us.

    I'd be really happy to talk to you further about anything and everything CP related and to share more of my experience if you would find that helpful?

    Be kind to yourself :smile:

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • hayley564564hayley564564 Member Posts: 6 Listener
    Hi Richard and thank you so much for coming back to me so soon!

    It is so helpful talking to someone that has gone through it into adulthood.  I wish there was a book to guide us all through everything which worked!

    It really resonates with me that Elliot vents his anger etc at me as I guess I am his mum and he feels safe doing so, it's tough though.

    I will take a look at the resources you have passed on as I think these will be extremely helpful.

    I think you are so right with what you say about one day being able to do something and the next, not.  Elliot struggles mainly with the dystonic element of his CP and as he grows, it is getting stronger and stronger.  I also think being cognitively fine is making him more frustrated, seeing people and his twin sister doing things that he cannot easily do.  I cannot even begin to imagine how he, and you must feel.

    It is also, from what you say, that his age is playing a significant part in all of this.  During lockdown he has not wanted to video chat or talk with his friends as he is so self conscious about it all.  I wish I had a magic wand for you both....sadly I do not.

    Please can we keep in touch as it really does help from a parent's perspective as, as much as I can try, I can in no way understand what is going on for him really.

    With thanks.

    Hayley
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    The fact that you are reaching out and asking these questions means that you do have a good understanding. Sadly there is no 'one size fits all' solution for CP. As I've got older I have had conversations with my mum and have an insight into what things were like for her perspective.
    Eliot will find his own ways to do most things it will take effort and tears but he'll get there. 
    My daughter hasn't wanted to video chat with her friends much either, so I wouldn't read too much into that. Unless you feel that he is isolating himself further than you would like.
    If you click on my name you'll see my email address. Of course, I'll keep in touch. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @hayley564564, I just wanted to say welcome and I'm glad that you found us. :) I have CP which mainly affects my left side, I know I went through a stage of frustration and comparing my physical abilities to my peers.

    As @Richard_Scope said, we all find our own way through it. Please do keep in touch. :)
    Community Partner
    Scope

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  • hayley564564hayley564564 Member Posts: 6 Listener
    Chloe - thanks so much for responding, it does mean a lot.

  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    Hi @hayley564564
                                   How are you? Welcome to the community and thank you for joining us. I was about 8 years old when I started to realise that I was different to other children who I was mixing with, both in the school environment and in life in general. I have Cerebral Palsy, it effects all four of my limbs but my right side is affected more. I remember feeling extremely frustrated and sad because I just wanted to be like everyone else. I didn't speak to someone until I was much older about these feelings which caused my teenage years to be difficult. Now, when I talk to my Mum about things, she also comments on the guilt she feels and as @Richard_Scope has commented on, I think this may be one of the reasons I didn't share my feelings with my family. I do recall being at Primary school and demonstrating my frustrations when my Mum was around and I know that I did this because I felt safe too. My Mum was always there for me and though it must be incredibly difficult as a parent, all you can do is support your child and provide them with the tools they need to help them come to terms with who there are. It is not always easy and there will be tears along the way but Elliot will get there, in his own time, when he is ready. I hope that the resources @Richard_Scope has shared are useful. Please if there is anything else I can do to help you and Elliot, then please do just ask. Please do take care of yourself. Thank you
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    Hi @hayley564564
    How are things going? I hope you and Elliot are enjoying this wonderful sunshine? 

    Scope
    Specialist Information Officer - Cerebral Palsy

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