Cerebral Palsy
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just found out my daughter has cp need support and info

astrachanastrachan Member Posts: 2
edited June 2014 in Cerebral Palsy
I found out my daughter Miyah has cerebral palsy at the begining of december. Im still coming to terms with it and still finding it hard, i go through stages of me not thinking about it and im ok and then the next week i think about it and cry my eyes out, mostly when im alone and thinking about her future etc. Altough i have a very supportive family and miyah's dad is supportive its still hard as i carried her and keep thinking i done something wrong.
I knew something was wrong when she was supposed be sitting and she wasnt and crawling was really late aswel with walking, she cant use her right side as this is whats been affected.
I dont know anyone who has a child who has a disability and finding it hard to express how i feel, im scared about her future and finding it very hard to talk about it.
Miyah's pedatrian has asked for a brain scan to be done as she is having these fits and to see what part of her brain is scared, im very nervous and not looking forward to this.
Im also finding it hard with her behaviour for a while now.
i just abit want of imformation and what to exspect in the future?

please get back to me
Aimee

Replies

  • icedgemsicedgems Member Posts: 1
    Firstly, things like this happen and it's not your fault. The same sort of thing happened with my brother, it was unknown til he wouldn't respond to noises. It's a case of monitoring progress and assessing their condition because it differs from one person to the next. Important thing is that you have the support of your family and disability is unfortunately quite common, it not something people always discuss.
  • milnenicolamilnenicola Member Posts: 1
    Hi I know how you are feeling it is so difficult my son is 5 years old and was diagnosed at 18 months. I feel the past 5 years I have gone through so many emotions. For a couple of years I have been in complete denial! Every time my son turned his back I cried and cried. However he has taught me so much he is so determined to do everything he wants to do and more. I am so grateful he is the way he is as I appreciate every milestone he reaches more than any other mother I know. It is so difficult it can be but I promise it gets easier to deal with!

    I hope the scan goes well, it might not give you want you want to know. My only advice would be to take one day at a time. Take time for yourself also without you can't give a 100% to Miyah. I have been through all the feelings you have gone through was me? Could I have done something different? There is nothing you could have done. You are just very lucky because as she gets older you will realize what an amazing determined person Miyah is. Take Care keep your chin up and keep fighting for her. you are her voice her everything xxx
  • nanniejnanniej Member Posts: 1
    We have also recently found out that my granddaughter has mild CP and my daughter is finding it difficult to accept. I grew up surrounded by children with CP some mild some severe (my sister has CP and is in her 40's now!) my best advice would be to take each day as it comes celebrate the milestones whenever Miyah reaches them and never compare her to any other child. The joy she will bring you will surpass any fears you have for her. My granddaughter has had her brain scan and took this in her stride, has Miyah started physiotherapy yet? This has been a great help to my granddaughter. You have done nothing wrong, this is not your fault, enjoy being with your daughter she is a special little girl. Someone once told my mum that God only gives handicapped children to people who are special because he knows they have the strength to look after them and give them the life they deserve. Now I am not a religious person but I have to say that I agree wholeheartedly with those words.
    Join a group in your area, talk to other people whose children have CP, it will help eventually. xx
  • astrachanastrachan Member Posts: 2
    thankyou everyone, it is really hard to come to terms with. Im trying to take everyday as it comes and no she isnt having physio yet on the waiting list which is between 12-18weeks wait. its just so hard work as she needs my attention 24-7
    xx
  • edwards49edwards49 Member Posts: 4
    Hi there, have just joined the new website and just read your post after browsing on here. I was in your position two years ago and fully understand every emotion you are going through. I felt my world had fallen apart when I was told something was wrong and they wanted Max to have a MRI to confirm what they believed was CP. I too blamed myself...was it something I did/didn't do during pregnancy/am I bad parent/what did I do to deserve this to my child...I'm sure you can continue this list with me!

    However, I will tell you that each day gets better and yes I still have low points when things happen (i.e. Max has started having frequent fits and we are being sent for ECG now to see if changes in his brain)where I feel the same raw emotions all over again. I used Face to Face the befriending service on scope and I had a scope advisor come out to our house and talk to me - both of these ladies were the best support I could have asked for in those early days. I felt no one around me knew what I was going through!

    Max is very mild but I know he is different...he won't let anything stop him and for a 2 year old he is so smart and people often think his older than he is. I ensure I don't treat him any differently than I would any child, and I know that there are children worse than Max out there.

    Yes I have the same worries as any mother...will he be picked on as he gets older, will he blame me, will he ever be able to drive/work etc! But that is the life of any mother.

    Being an early years teacher has taught me one thing howver, push at an early stage for every bit of help you can. Max is under the physiotherapist, occupational therapist, child development centre and has constant checks with his peadiatric consultant. I never wanted to claim disability for Max but when I became a single mum I realsied that Max has an entitilement to it and they were great at helping me sort things.

    Make sure you get plenty of 'you' time (that's where I went wrong in the earlly days of diagnosis!). Your little girl will be your strength and be reassured there are people in the same position as you out there. Shout anytime you need to chat.

    Kim x
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