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daughter of ten months just diagnosed with cerebral palsy

chelseabudworth24chelseabudworth24 Posts: 8Member Listener
edited May 2016 in Parents and carers
hi,
my daughter is ten months old and has just been diagnosed with mild cerebral palsy, she has been seeing a physio once a week for 2 weeks now. they say that because there was birth problems and my daughter has right sided brain damage that the cerebral palsy is in her left side requiring lots of physio on the left leg and left arm.
is there any one in a similar situation as im really struggling to get my head round it all and come to terms with it..
many thanks xxx

Replies

  • WonderdogWonderdog Posts: 1Member
    That was me 24 years ago. There is a HUGE community of parents/kids/carers/siblings out there. CP Sport were fabulous and we were also given help through the early years/health visitor. Contact your GP and ask for any help they've got out there. You'll have to fight for DLA (pip) once she's older but do it, and good luck.
    my daughter has a left sided hemi, epilepsy and a slight visual impairment. She's at Uni now and also a budding Paralympian. 
    There's lots of help and support out there but don't get overwhelmed. Get the leaflets etc and go through them over the next few months when you feel your head can cope with them. Good luck xx
  • SwoodyxSwoodyx Posts: 1Member
    Hi Chelsea. My 17 year old son was born with Left Hemiplegia. We've been through it all, and learned so much along the way. I always wished there was someone else in the same situation I could talk to, so I know how frustrated and scared you must be. Don't worry! I've met soooo many AMAZING children and fully functioning adults with CP over the past 4-5 years. I'm a member of a Facebook group full of parents just like us! They share photos and tips, and we all talk about everything. From hospital talk, to achievement videos from proud parents. I'd be lost without them. It's a private group, so nobody else in your friends list will see what we're posting and we've all been through the treatments, ops, physio and specialist appointments... If you would like I could nominate you? :) If that's not really your thing, you can always message me on Twitter @swoodyx My child is only disabled in other people's eyes, to us, he's a legend :) 
  • RosRos Posts: 12Member Connected
    My daughter has cerebral palsy affecting all four limbs and her trunk muscles, and is a wheelchair user.  She was diagnosed at 15 months old and I remember being utterly devastated.  I can't pretend it has been an easy ride - at one point with speech therapy and physiotherapy she was attending over 100 hospital appointments each year, and at home it was very hard work.  However, my daughter is now 32.  Her life has turned out very different from what I would have planned for her - she has had a number of operations, and because she is severely autistic in addition to her cerebral palsy (as a result of prematurity) she now lives in a care home.  But I can tell you this: she is the most loving, caring individual you could hope to meet, with a cracking sense of humour and amazing musical ability.  She is really happy and is in good health.  Some people might look at her and think we have all had a hard life and that her quality of life now is poor but I don't see it that way at all.  I feel that parents of disabled children live more fully than other people.  Yes, we have heartaches others will never know (as you are experiencing right now) but we also have incredible highs when our children achieve something no one thought they would manage.  We watch them struggle to do things that come easily to other children, and when they succeed, the buzz we get out of that is indescribable.  We might have lower lows but we have higher highs too, so I feel as if we really live life in all its fullness and extremes in ways that other parents don't.  I look back now my family are all grown up and I don't think there's much about the past that I would change.  It has been a really worthwhile, rewarding experience bring up a disabled child.  And although I struggled with her moving into a care home at the age of 22, I found that I almost instantly swapped back from being her carer to being her mum, and that has been really lovely.  I'm very fortunate that she lives just down the road from me and I see her very regularly, and when I do it's nearly always for lovely things like girly shopping or lunch out.  She comes home every Sunday to spend the day with me and her sisters, and we are one of the happiest families you could find.  I won't pretend it hasn't been hard, but it also hasn't been bad or negative.  It's been a bumpy but very rewarding journey and I feel happier and more at peace now than I ever did before she was born.  Having said that, I've had a really supportive church who have always been there when we needed it with practical and emotional support, and if I have one bit of advice for a new parent of a child with cerebral palsy, it would be accept every bit of help you are offered, especially if it involves babysitting and giving you a chance for a night out or a good rest.
  • cpmummycpmummy Posts: 2Member
    Hi Chelsea, firstly well done on bringing yourself to discuss this openly, secondly, my son was diagnosed at 10 months with exactly the same as your child. Left sided hemiplegic cerebral palsy. Depending on where you live there are plenty of places you can take your child to really help them progress. My son is now 5 and he sat up at 1 and a half, walked at 3 and a half and spoke at 3 and a half. He now goes to a mainstream school and is doing fantastically well. As long as you have time and determination to put in, you can achieve as much as your child wants to. If you let me know where you live I can suggest some places if I know any. 
    All the best,
    Chelsea 
  • wheelygirlwheelygirl Posts: 45Member Courageous
     I have spastic athetoid quadripelgic cereablpalsy but that's just the label they give in 96 yes my body doesn't work normally but they said I wouldn't talk sit walk be  able to use my hands  they right about somethings  like waking and I can't use my left side at all and I need hoising  but I have learned to use the limited functionality of my right side to feed myself and drive my elecicte wheelchair and  use my phone/iPad oh and I can talk the hind legs off a donkey I guess what I'm trying to say is that she wil find her own way round thins :)
  • chelseabudworth24chelseabudworth24 Posts: 8Member Listener
    firstly thank you all for you're wonderful comments,in a way its nice to have people in a similar situation if that makes sense.
    its also nice to see so many wonderful stories on how well you and your children are doing!  swoody that would be amazing if you could join me on that group, i think that would be ideal for me :)
  • Hi Chelsea..... I'm a family support coordinator for a charity called Caudwell Children and we support families across the UK who have children with additional needs.... If you want any additional support please don't hesitate to contact me to discuss how we can help you.... our website address is www.caudwellchildren.com

    Ema Harker..

  • InformationSupportWorkerInformationSupportWorker Posts: 15Member Connected
    Hello Chelsea
    I am an Information and Advice Worker at Scope , you've got some great posts but if you need any further information please let me know.

    Best wishes

    Vicky
  • frowlfrowl Posts: 1Member
    Hi there. I have a group on Facebook your welcome to join. If you search "somewhere to chat for parents of children with cerebral palsy". There are lots of parents on there who can help and give advice. I am also a mummy to my 22 month old son who has quad cerebral palsy, a visual impairment and epilepsy. I understand just how you feel! We were told my son wouldn't roll over/sit up or move. At 22 months he can do all of this and is now starting to communicate. So always have faith and focus on your child not the doctors. If you want to add me on fb for a chat or help please do. Tessa Whiting xx
  • ZeezeeZeezee Posts: 80Member Pioneering
    Hi, I am really sorry to hear about your daughters cp. It can be a really stressful and heartbreaking time when your beautiful child is diagnosed with cp. Even though you will have no doubt suspected what the doctors would tell you, it is still a bodyblow when your worst suspicions are confirmed. I may be struck down for saying this but I felt cheated, When me and my ex-partner decided to have a baby we had the usual discussion about if the baby had any problems we would love her the same but you don't seriously believe your baby will be anything other than perfect. My daughter was two in march and I can honestly say I don't see her as disabled any longer she is perfect to me and my family, she rolled over on 13th Nov 2015 at 19mth old and sat up unaided on 9th may 2016 age 2yr 2 mth. So she is reaching her milestones, ok it's later than other kids and has taken a lot more work/physio etc, but trust me the ecstatic pleasure I felt when she did get to those milestones was so much more than any parent of a child with no additional needs. So yes you will have to change your expectations and timelines for what you thought your childs and your life would be like but with the lows you experience come incredible highs, I won't lie and say I don't get a little sad when I see a cute three yr old prancing around in a pretty little tu-Tu knowing that Ziyal may never be able to dance around but who is to say that if she didn't have CP she may have been into bob the builder at 3yr old anyway. It's amazing how quickly you realise that despite how back breaking and heartbreaking at times raising a child with additional needs is, the pleasure and the way their strength of character inspires you every day, and how proud we are when our children do things that the professionals say they will never do, that it is us the parents of these wonderfully special children are the ones who are truly blessed.
  • JadeBJadeB Posts: 62Member Courageous
    Hi my name is jade, 
    i am 23 and have ataxic cp. I was born at 29 weeks. I was considered at time as a mirical baby. I had a bleed on my brain and my mum was told the part of my brain controlling abilitys to move walk and talk had died of and I would have severe learning difficulties. BUT at age 3 I learnt to walk and could already talk. I went to mainstream schools and have no learning disability. Although this took a lot (14 years of physio in total.) my parents never wrapped me in cotton wool and allowed to discover things myself the same as any other child. I am now a support worker for disabled people and am travelling the world next year with my loving partner, who fully accepts me and my Cp. x
  • chelseabudworth24chelseabudworth24 Posts: 8Member Listener
    Sorry my reply to your comments is delayed! But thank you all for your wonderful comments and it really does help me. My little darcey is 18 months old now she can sit unaided and can commando crawl! She has just been given some boots she has to wear and help and the physio mentioned casting? And splints also we are waiting on a standing frame. Seems to be taking a long time to even get an appointment at this stage and was waiting for 16 weeks for her boots. I was wondering if any one knew is it possible to buy my own equipment? 
    Thank you every one 
  • wheelygirlwheelygirl Posts: 45Member Courageous
    My parents think it would be ok for you to buy your own equipment as long as you  get it set up by pt /ot
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