Struggling with child who enjoys being poorly — Scope | Disability forum
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Struggling with child who enjoys being poorly

Carolyne74
Carolyne74 Member Posts: 4 Connected
Hi there,
Anyone have a child with chronic illness who enjoys being poorly because it means they get you to themselves???  Struggle getting her off treatment as she gets upset if recovering as it means a return to normal life! 
Anyone?

Comments

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Carolyne74   Pleased to meet you welcome.

    Thank you for joining and sharing.

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  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @Carolyne74 and welcome to the community! I hope you find this a supportive place :)
    I was just wondering how old your daughter was and how long she had been ill for? Adjusting back to 'normality' can be a challenge, especially if someone has been ill for a long time. It can be a daunting process, does she have support for this?

    I look forward to seeing you around the community and please do let me know if there is anything else I can do to help :)
    Scope

  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @Carolyne74 and welcome to the Community.  It is nice to meet you.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Carolyne74
    Carolyne74 Member Posts: 4 Connected
    She will be 14 next month and yes I have another daughter called Mary who is 10. Real resentment from Lily ( the eldest one who is poorly) towards Mary. 
    Lily seems to think that I belong to her. 
    She's been poorly since birth. Born with Tracheo oesophageal atresia and oesophageal fistula. Repaired at 2 days old. 
    She has tracheomalacia for which she had surgery which was unsuccessful, reflux, over reactive airways, brittle asthma, a host of immune issues, Alpha zero thalassemia trait despite being incredibly rare in children with 2 white parents. Basically she is ill about every 12 weeks. She will get a virus and her breathing will deteriorate really quickly. Will need oxygen, nebulisers and have now found a machine in hospital called Optiflow which is great but means a hospital stay. 
    I totally get that I have been her lifeline and that she feels that she needs me to keep safe, it's just so smothering and difficult! 
  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    This sounds really difficult @Carolyne74. Do you think some sort of counselling might be of use to Lily? Are you getting any support for yourself? I can only imagine how much of a struggle this has been and it sounds as if her behaviour now is affecting you. Do you get much respite, or any opportunity to do anything for yourself (or with Mary)?
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  • April2018mom
    April2018mom Posts: 2,872 Connected
    Do you have respite care? That might make a difference. Also see if Lily is keen on the idea of therapy or counselling.
    Sibling resentment can be easily fixed. How much time do you have to yourself? Do ask for help. Apply to the social services department of your local council. They can assist. 
  • Carolyne74
    Carolyne74 Member Posts: 4 Connected
    She is having counselling and has been for ages. The main psychologist admitted to me the last time that she doesn't know how to help Lily. I am now with someone up at GOSH which is great but not good for acute issues and it means yet more time away from an already poor School attendance. 
    I am not getting any help for myself no but am thinking I may need to. 
    What can social services do? I did get an early help worker who came once then never again. I don't think I'm that bad ?
  • April2018mom
    April2018mom Posts: 2,872 Connected
    She is having counselling and has been for ages. The main psychologist admitted to me the last time that she doesn't know how to help Lily. I am now with someone up at GOSH which is great but not good for acute issues and it means yet more time away from an already poor School attendance. 
    I am not getting any help for myself no but am thinking I may need to. 
    What can social services do? I did get an early help worker who came once then never again. I don't think I'm that bad ?
    Girl I thought my son’s issues were bad but behavioral issues are a different kettle of fish. Ask your local council for support. 
  • BeckyOTW
    BeckyOTW Member Posts: 2 Connected
    edited July 2019
    Hi Carolyne! I think this is probably a more common problem than people realise. When kids have been poorly for ages, returning to 'normal' is often really daunting. Because it's not 'normal' for them! I don't think it's anything that you've done wrong. Have you heard of Over The Wall? They're a charity that provide free residential camps for children with health challenges. You could always think about this for Lily? Here's their vision (taken from the website): 

    Our vision is that all children and young people, living with the challenges of serious illness and disability, can access transformational therapeutic recreation camp programmes, free of charge.

    There are an estimated 50,000 children and young people in the UK living with a serious health challenge. For these young people, quality of life is adversely affected by isolation and their inability to participate in many of the everyday activities enjoyed by their friends and peers. This often results in a growing lack of self-esteem and confidence which can become a barrier to future growth and development. Over The Wall’s residential programmes are designed to bring about transformational change to tackle these issues and to ensure our campers return home with a new sense of their abilities and ambitions, and feeling far less isolated.

    Our long term aspiration is to build the next generation of children’s residential camp through which to deliver educational and recreational activities for children living with serious health challenges. This purpose-built facility will be an asset available to every UK children’s charity, and allow us to transform the lives of far more children and young people than ever before.
    They also run camps for siblings of children with health challenges. A lot of the time, the child with the health condition is the one that naturally needs a huge amount of attention, and their siblings can feel left out. These camps are GREAT for them! 

    Here's a link to Over The Wall's website: https://www.otw.org.uk/ 

    Wishing you all the best, 

    Becky
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Thank you for this @BeckyOTW and a very warm welcome to the community!
    Scope

  • Carolyne74
    Carolyne74 Member Posts: 4 Connected
    Massive thank you. Have had al  looks really good. I reckon we are a way away from her leaving my side for that long but something to work towards. X
  • April2018mom
    April2018mom Posts: 2,872 Connected
    How are you doing today?
  • BeckyOTW
    BeckyOTW Member Posts: 2 Connected
    @Carolyne74 Over The Wall also do family camps- you could all go for a weekend together if you don't think she's ready to go alone? :) All the best x
  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    Hello @Carolyne74, how are you and Lily getting on?
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  • Charleyy1512
    Charleyy1512 Member Posts: 1 Listener
    Hi @Carolyne74 my little one is 18mo and was born with TOF/OA and Tracheomalacia too. I've joined scope today and your post was the first i've seen. How coincidental! Hang on in there mama, you've got this.
  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    Welcome to the community @Charleyy1512. Please let us know if there's anything we can do to help. :smile:
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