only recently just found out — Scope | Disability forum
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only recently just found out

lozzer25 Community member Posts: 89 Courageous
hello my name is laura i was diagnosed with having cerebral palsy 2 months ago after 25 years, intially i was very frustrated and rather annoyed but on the other side of the coin i am relieved to know what was the matter with me i still think that it should of be known when i was younger


  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    Hi Laura

    Wow - what a long time to have to wait for a diagnosis! What sorts of things do you have difficulty with? How on earth have those things you find hard been explained away before now?! At least now you know you will get more help (hopefully) and we are always on here to chat with when you get frustrated about stuff.

    My little boy Tom has CP in all 4 limbs and is very stiff. He's nearly 19 months now but still can't sit unaided for long or crawl yet. However, as we speak he's in a baby walker on wheels borrowed from a friend and is slowly making his way around the room so that's pretty exciting! He's a bright little boy but gets very frustrated when he finds things hard and he's got a twin sister so he can see all the things that she can do that he can't do yet so it's tough for him. Mind you, she also provides him with the drive to achieve new things so it's good that they have each other. I have a 4 year old called Molly too and she's a wonderful big sister to her little brother and sister.

    I know it must have come as a big shock but it's just a name... Nothing has changed - you are still you it's just that now the difficulties you have now have a name. Easier said I know but when Tom was diagnosed at 11 months it just knocked me to the floor and then I gradually started to think 'he's still my little boy, he's still my Tom, he's still wonderful - at least we know WHY he finds all these things hard'. It takes time.

    Big hugs & speak soon

    Maria xx
  • NicolaMc
    NicolaMc Community member Posts: 8 Listener
    Getting around the room in a baby walker! Go for it Tom!! Such a lovely update, has really made me smile.

    Laura, I can completely understand your frustration. But as Maria has already said you're still you, just now you have a reason why the things you've always found difficult have been difficult. Here's a good place to vent if you need to, lots of people who just 'get it', which is worth its weight in gold.

  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    hello maria, thank you for your reply i have had always had problems with certain things when i was younger it was running as i suffered from spasticity in my legs, when i was 17 after years of being fobbed off i was given a brain scan which revealed that i had slight brain damage and when 17 i was in college and had a test done in which they said that i more than likely had dyspraxia. i suffer from tremors in both my hands which have become increasingly noticeable over time. the last 3 years have been a wake up call and highlighted my problems which were more or less always in the background before, i had a little boy in 2005 when i was 19 he was born with a chromosome abnormality he has had two lots of heart surgery, but thank god he has been discharged from cardiology now, me and daniels dad split up just before he turned three and i moved back with my mum, daniel is now six but mentally is three he has unpredictable violent emotional outbursts which i find very hard to cntrol(restraint wise). i was referred to adults services who referred me on to the neuro-rehabilitation team and the consultant, then the report came back and there it was in black and white finally, my tremors was starting to worry me as i didnt know what was causing it, finally i know now. I am gettin o.t and physio input now, and i have to try to learn my body to sit, stand using a completely different set of muscles. I have alot of problems with lifting carrying and the most frustrating is cutting i suffer from hand spasms which come out of the blue. I have dyspraxia aswell. Aww thats brilliant about your little boy the thing that i have realised is that are special children are resilient and so strong and they never stop surprising us :). it may take them a bit longer but they will get there, aww bless em :). xxxx


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