What would you tell your parents now? — Scope | Disability forum
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What would you tell your parents now?

a_foakes Member Posts: 20 Connected
Hi all,

My daughter has recently been diagnosed with CP (mixed spastic and dystonic, all 4 limbs) and it struck me recently I have been trying myself up in knots trying to work out the best things I can do for her. These range from purely physical therapies all the way through to ensuring I have a positive attitude about her CP, especially when we meet other people.

Everyone here has always been so helpful so I thought I would ask you for your advice. In particular if you could go back to your childhood and give your parents some advice on how best to help you what would it be? Annabelle is 1yr old but it would be great to hear any thoughts for any age group. 

Thanks for reading this post and wishing you a lovely day!


  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Great question! Can this be for any disability or is it just for CP?
    Disability Gamechanger - 2019
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Really interesting and mindful question @a_foakes, really hope to see some responses to this!
  • Scampicla09
    Scampicla09 Member Posts: 1 Listener
    I don't have cp but have spina bifida from birth. I would say to my parents not to wrap me in cotton wool and follow my lead on what I want to have a go at doing even if it's a struggle, easier said than done though when you are the parent and only want the best for your child.
    Therapies available today are far better than I was born in the 1970s , I'd say try everything that is offered to you , you sound like you are doing a great job.
  • a_foakes
    a_foakes Member Posts: 20 Connected
    That's really helpful and great advice, thank you. It's so tempting to try and wrap her in cotton wool but every time I get tempted I'll do my best to remember your words. 
  • a_foakes
    a_foakes Member Posts: 20 Connected
    Thanks for your question Ami2301 and I'd love to hear advice from anyone with any disability, not just CP
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    I became disabled at 22, so it's difficult to say. However, if I were to go back to my childhood and talk to my mum about becoming disabled, I would say

    Mum, whatever happens to me when I grow up, don’t be scared because I need you to be strong for me. I will always be Ami, nothing can change that. Please don’t become overprotective of me, let me spread my wings, if I fall then let me learn to get back up again. 

    I have a voice, I will say if I’m not OK, I will ask if I need something. I will always appreciate everything you do for me but you have to let me breathe, we need our own space sometimes. 

    Please just be patient with me, we will always be a team. We will get through this together.
    Disability Gamechanger - 2019
  • a_foakes
    a_foakes Member Posts: 20 Connected
    Ami, your reply is so beautiful, thank you. It made me cry very happy tears and will inspire me to be a better mother to my daughter. 
  • a_foakes
    a_foakes Member Posts: 20 Connected
    Your words ring so true Richard. Thank you for taking such time to think about your reply, it's very much appreciated. I will definitely be showing your reply to my partner and thinking about my own feelings of guilt and how little purpose they serve. 
  • Richard_Scope
    Richard_Scope Posts: 3,105

    Scope community team

    Feelings of guilt and even of grief are very normal. The very fact that you are asking questions such as this indicates to me that you a fantastic parent already. The community will be here to support you!

    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. 
  • SarahJones
    SarahJones Member Posts: 3 Listener
    I haven't replied to any threads before but I felt I had to on this one as it is such a wonderful question.  Richard, your comment about making your mum realise it's not her fault made me cry.  As a mother, you always feel responsible and to see your words written down really struck me, thank you.
    As parents, we always try and do our best and hope that it will be good enough so to see some of those thoughts/suggestions written above really made me feel comforted.  Thank you.
  • JulesA65
    JulesA65 Member Posts: 33 Courageous
    I would say to my parents don't isolate me in my room, Mum be honest about your cancer and how long you have left, stand up to my grandparents and don't let them takeover. My Mum died just after my 15th birthday and made everyone hide the truth from me about the seriousness. It kind of screwed me up. I also spent a lot if time on my own shut in my bedroom as my Mum struggled to cope with my Dad's mental illness
  • mmarquis
    mmarquis Member Posts: 6 Listener
    I'll repeat what others have said by saying what a wonderful question.
    I have a daughter with CP, she's 17 and has just put in her University choices, I had a complete wobble about this but know I must let her go, she wants to live away and this is something I need to let her do, it's not going to be easy and I will worry every moment but also believe it will be the making of her. I agree we shouldn't wrap up out kids in cotton wool and we must let them try everything they want to and encourage them to be the best they can. I also took on board the comment about feeling guilty, as this always sits in the back of my mind. 
    You sound like you're going to be an incredible parent and I wish you all the best for all the wonderful times ahead of you.  
  • essjay
    essjay Member Posts: 5 Listener
    It's that fine line between letting them try to do what they know they can do and letting them try to do something new. Letting them try without you hovering in the background a bag of nerves rattling in the background.  They know when we get anxious, they know when we're relaxed about stuff, they're kind of clued up about body language usually from people watching so much.  It's letting them move on and out knowing we've done the best job possible by giving them a sense of being able but also knowing they can ask and we'll be there in a heartbeat, right?  But getting that balance is the hardest thing of all. With all the support here I'm totally sure you will do your damndest to make sure she can and will do the things she is able to,  But like anything its babysteps, literally.  So much better to be warned in advance than to have  a hindsight education.  What a good question and lively thread, thank you. :smile:
  • Eadiesmummy1
    Eadiesmummy1 Member Posts: 90 Courageous
    Good evening, i hope you are well. I suffer lots of complex neurological disorders, i am hospitilised regularly and my mum worries to death. I told her "Thanks mum, but remember to take time for yourself, take a breath, have a nice hot bubble bath and dont worry for at least half an hour. you worrying makes me even more anxious, so try to be strong and dont show me your fears, just reassure and guide me where you can, come to my appointments and dont treat me like i need special treatment because just for a few seconds it allows me to feel normal' im sorry if none of that relates. I'm happy for your daughter that you are so supportive as a mother! xx 
  • a_foakes
    a_foakes Member Posts: 20 Connected
    Thank you all for your inspiring words. Jules I am so sorry about your mum and I am touched you were able to share your story. Sarah, marquis and essjay you all sound like amazing parents and your words will encourage me to follow your excellent examples. Eadiesmummy1 you sound like the most wonderful daughter and I would consider myself blessed if Annabelle were to have your outlook on life when she is older. 
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    I would say please be mindful of your children’s mental health.


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