Did anyone else feel down about their child's diagnosis? How did you deal with it? — Scope | Disability forum
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Did anyone else feel down about their child's diagnosis? How did you deal with it?

Aj09 Member Posts: 3 Listener
Hey did anyone feel down about their child's diagnosis. How did you deal with it. 


  • Teddybear12
    Teddybear12 Member Posts: 752 Pioneering
    Hi @Aj09  My daughter was 24 years old when she was diagnosed with IPAH no cure only hope a double lung transplant. She had just started teaching and was engaged to be married really fit went to the gym everyday. Within three weeks could not walk to the end of the drive as she could not breath. I was devastated her whole life had been taken away. It does not matter how old your child is you expect as a mother/father to be able to sort it out. You deal with it one day at time and fight for everything. The only thing I can say is that you still have to find time for yourself even if it is only ten minutes a day. Never give up and if you need to shout and scream do.  
  • Aj09
    Aj09 Member Posts: 3 Listener
    Awwwk that's terrible your beautiful daughter. Sorry to hear that. My daughter is only 3.5 but got diagnosed with a learning disability and I feel so low... I know I shouldn't but I don't know how to get rid of negative thinking. I just wish I was well again x
  • Teddybear12
    Teddybear12 Member Posts: 752 Pioneering
    edited October 11
    @Aj09  The big thing you have to remember is that your daughter herself will not be unhappy as she has never been any different. At the moment it is you that it is so difficult for. You will have good and bad days as you get used to her diagnosis. Be kind to yourself have you spoken to your doctor ?  You will get there just do not expect to much to soon. Take care. x
  • poppy123456
    poppy123456 Member Posts: 23,694 Disability Gamechanger
    You child having a diagnosis can be a shock and will take some getting used to especially if you weren't expecting it. What you must remember is your child is still the same person they were before you had the diagnosis. In time you will come to terms with it and deal with it the best way you can.
    My daughter was 17 when she was diagnosed with a learning disability and Autism. I had been fighting for her for 14 years because i knew in my mind that something wasn't quite right. I went through He!! with different schools, local Authorites, GP's and CAMHS, who were absolutely useless! We were at home when we had the offical diagnosis, after a visit from my daughters Consultant who wanted to come to our home for the appointment. After she went i said to my other daughter that i was very relieved to have finally got the formal diagnosis, after fighting for so long. It didn't change the way we thought of her, she was still the same person.
  • Aj09
    Aj09 Member Posts: 3 Listener
    It's hard. I love her with everything I have and don't understand why I'm so low. :( 
  • Tori_Scope
    Tori_Scope Posts: 5,974

    Scope community team

    edited October 12
    Welcome to the community @Aj09 :) 

    I'm glad that some fellow parents have been able to share their experiences. I hope that this has helped you to realise that it's okay to feel low, as getting a diagnosis for your child can bring up lots of difficult feelings and worries? I've moved your post into our parents, carers, and disabled parents category so that you can connect with other parents.

    Have you spoken to anyone about how you're feeling? If you haven't yet, I'd definitely encourage you to speak to your GP. Many parents put the needs of their chid first, but it's really important that you look after yourself as well. 

    I also wanted to point you towards our family services, in particular our Navigate service, as they could help you to work through your feelings and concerns and find a positive way forward. Perhaps you could have a look and let us know if you've got any questions?

    I realise that you've said you're not sure why you're feeling so low, but have you been able to identify any particular thoughts that have been popping into your mind that might be contributing to how you feel?
    Online Community Coordinator, she/her

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