Hi, is anyone in a similar situation? — Scope | Disability forum
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Hi, is anyone in a similar situation?

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Khadeeja
Khadeeja Community member Posts: 5 Listener
Hi, I care for my son who was born with a rare, life limiting disease. I'm finding it hard lately as my son is in and out of hospital and is in a lot of pain. I'm finding myself more and more stressed and my body is breaking down. Does anyone have any tips on how to get through this. 
Thanks in advance for listening/reading/replying :smile:

Comments

  • surfygoose
    surfygoose Community member Posts: 430 Pioneering
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    Thinking of you and your son.

    Do you have any local hospice or other charity that can help? We have a local hospice charity for children with life limiting conditions our close friend uses and they send out carers from there to help out overnight for them as well as having him in for respite care. Also they give lots of support emotionally to the parents as well as running events for siblings of the poorly child.

    Sorry you are going through this.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @Khadeeja

    Welcome to the community! :)

    I am so sorry to hear you feel so stressed and it is having a physical effect on you. Can I ask, do you have support around you? Could I also ask, has your son ever had a needs assessment? They would be able to help support you with things from equipment to day centre trips that could give you a break. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Khadeeja
    Khadeeja Community member Posts: 5 Listener
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    Hi, i have an abundance of support. Im from a big family and so is my partner!. I dont think hes had a needs assesment but hes under a multidisciplinary team within hospital, pallative care in the community and hes also under acorns childrens hospice so theres lots of support there too. I wouldnt feel comfortable leaving him alone plus id miss him too much haha!
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Awww it's lovely to hear you and he have so much support. There may be something under Acorns where you could sit, have a cuppa and chat with other parents? 

    I've seen some children's hospices host days with an activity for an hour or so. That way he's not alone, you're there but you are getting that time with other adults too? May be worth asking about :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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  • Khadeeja
    Khadeeja Community member Posts: 5 Listener
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    Thank you! Yes they do indeed i attend a stay and play session every fortnight and also do a family swim session which is nice.  Thank you for your help
  • Khadeeja
    Khadeeja Community member Posts: 5 Listener
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    Hi Surfygoose

    Thank you for the kind message. Yes, he was accepted into acorns childrens hospice and they are amazing tbh. Specially the physios they're very helpful and run stay and play sessions. I just find i cant really open up to people in person. I feel like im putting to much on them. 
  • surfygoose
    surfygoose Community member Posts: 430 Pioneering
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    I understand that you don’t want to put on people but from our perspective with our friend we actually love the fact that she’s really open and tells us what’s going on and all her feelings. It makes it easier for us to help and support her. Maybe your friends will feel the same? 
  • Khadeeja
    Khadeeja Community member Posts: 5 Listener
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    Shes lucky to have you. Yeah i guess so. I do have a lot of overdue catch ups that i need to sort out. I always tend to put them off when my son isnt well etc. But i need to get out there more. Thank you 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    It is understandable that you put things off when your son isn't well etc @Khadeeja. However, time for yourself is also super important. Have you been able to plan any of your overdue catch-ups yet?  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

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