Parents, carers and disabled parents
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A long journey

SystemSystem Posts: 519

Scope community team

This discussion was created from comments split from: Calling all lovely disabled parents.


  • Kathy_BramleyKathy_Bramley Member Posts: 133 Pioneering
    edited February 2017
    I have sensory, executive function/coordination/,planning, short term memory and mental health difficulties, possibly due to DCD/dyspraxia or high functioning autism, a bookworm coding son with high functioning autism and a daughter with electic interests but especially cooking and singing. She also has Severe Learning Disability/brain injury and cortical visual impairment due to neonatal sepsis, probably Group B Strep. But she's 12 now. It's been a long journey. People tend to assume she has autism.  I hate the fact that trying to do a thumbnail pen portrait that doesn't sound cheesy but gives a relatable flavour comes down to medicalised details. Negatives. Or cheesy sound bite takes on their interests.

    My husband eventually couldn't cope with his job and supporting all of us. I feel low, and scared. But now isn't our darkest times somehow. And I  probably need to get a job to gove something back having not worked since before my children were born and that was my only real job after failing uni. But I have very little confidence as to how that will feel or work with strains of being over confident! 

    Cally, I have a couple of friends with ataxia, one friend from the village I grew up in, Kerry. 

    I was severely ableist bullied at school and although to talk to seem not really disabled at all, and I can cook at timea, I struggle with everything against my inner self, and in working with my children, and haven't really found the right help or self confidence. But somehow I do have some. So I feel like I am punching in the dark as a stress ball. But also an interesting old hand.
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
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