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How do you feel motivated?

UmaPumaUmaPuma Posts: 2Member Listener
edited April 15 in Parents and carers
Hi, after ivf, I am now a mother to a severely disabled child, who is epileptic, registered severely visually impaired with global delays. She is nearly two, does not walk, talk, seat, scoot or crwal. I work full time. Some days are good and some days very bad. How do you feel motivated?  

Replies

  • thespicemanthespiceman Posts: 5,278Community champion Disability Gamechanger

    Hello @UmaPuma   Pleased to meet you welcome.

    Thank you for joining and sharing.

    I am one of the team of community champions who guide, advise and help new members who join the forum.

    Sorry to hear what you are going through. You have come to the right place for support , information and most important of all friendship.

    In response to your question. There will be many members of our community be able to answer.

    Especially Parents with children who are disabled. We are here to listen be understanding. Care and share.

    Please have a look around our website, feel free to join in discussions.

    Please ask if we can help and advise on anything. Some one will know from our team or a member of our community.

    Please take care.

    @thespiceman

  • Ami2301Ami2301 Posts: 5,762Community champion Disability Gamechanger
    Hi @UmaPuma welcome to the community! You might like to check out our Parents and Carers message board. I'm sure you will find many parents who can relate and would be happy to offer advice and support.

    You may also find the information provided below useful
    I hope this helps and please do not hesitate to let us know if you have any further questions :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Kate_ScopeKate_Scope Posts: 74Navigate Pioneering
    edited April 15
    hi @UmaPuma and welcome to the forum, My name is Kate and while I am a parent adviser here at the navigate service at scope- I am also a parent to a beautiful daughter called Eve. Eve is now 18, she is a full-time wheelchair user, she has Cerebral palsy and epilepsy. Having a disabled child and working full time is very difficult, trying to get to all of the appointments it so hard as is trying to keep going. 


    I really started taking it a day at a time, as your daughter has a diagnosis of disability your employer should be able to give you time off for appointments. 
    It does get easier, and once Eve was in school- she attended mainstream, the physiotherapists would go in and teach the one to one staff how to do therapy with her, therefore taking some of the load off me. 


    The appointments do settle after some time and they start to get less once all interventions are in place. 
    I started to practice mindfulness in the evenings when she was asleep and also sort support from a place like Scope where I was able to chat with other parents- I found this the motivation needed, there are a lot of parent forums on Facebook and other places and I was managed to get support from others in the same situation.


    For me, the early years were the most stressful, like I said previously- once the interventions were in place it started to calm down. 
    What I would say is really take it a day at a time, if you are feeling very overwhelmed it may be a time to talk to your GP, don't do this alone- or feel you have to be superwoman. 

    I am not sure how long ago your Son/daughter was diagnosed but we have a service here at Scope, called Navigate. it is for parents of children who have had a diagnosis in the last year, we can offer emotional support for a period of six weeks if you live in England or Wales, here is the link if you feel it may be of use to you. 

    https://www.scope.org.uk/navigate


    I wish you well 

    Kate 


  • oliva087oliva087 Posts: 9Member Listener
    Don't' delay. Go to the doctor for better advice and motivation.
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