parent needing support and advice — Scope | Disability forum

parent needing support and advice

twem Member Posts: 3
edited June 2014 in Cerebral palsy
i,m really hopeing that somebody could give me some advice on cp and when will i know how bad she is when will i know if she will ever walk shes 7 and a half months at the minute no where near sitting up she cant roll over and she lowers her head all the time almost like its to heavy we only found out on friday that she has cp still dont know much could do with some advice from parents with children with cp


  • Benko1
    Benko1 Member Posts: 6
    Hi. I feel for you - I really do - but unfortuntely there is no quick and easy way of answering these questions as every child with CP can be affected in different ways so you can't really compare. The truth is that it could be years befroe you will know if she will walk or not. My son is nearly 4 and he has a walker that he can walk with (with quite a lot of support) - but we still don't know whether he will walk properly and with what level of independence - only time will tell.

    You have no option but to take one day at a time. You will probably find that it takes much longer for her to master skills - particularly motor skills. What can take an 'abled' child weeks to learn can take months and months for a child with CP to learn. You may also find that they master a skill to a certain level and then plateau for a while and then have another spurt.

    I don't know if your child has already been referred to your local Child Development team - but if not you should try and get referred if possible, The Occupational Therapists and Physios will monitor her and recommend things you could be doing to help.

    There will be days when you are rock bottom but by contrast there will be days where you will be so proud of her when she manages to achieve something, however small it may seem to others. I know it is hard, but try not to let the worry takeover you - it will always be there in the back of your mind but try not to let it affect you all day everyday otherwise you will miss out on things with her.

    One last thing - however bad things may seem - you will change your opinion. As you learn to accept things - what seems like the end of the world now will not seem that way anymore.
    Be strong and you will be fine xxx
  • jenster22
    jenster22 Member Posts: 9
    I read your post and it was almost like reading my own a few years ago. My eyes are welling up!

    My son has CP was diagnosed at pretty much the same time as you and our lives were just turned upside down.
    Its so hard in the few few days, weeks months to concentrate on anything, you just want to know what sort of a life your child will have. These questions never go away, but i promise they do get easier.
    You will be so confused with so many appointmnents and tests the next few months but there are so many people on here that can help.

    We were told if Joe, my son, was sitting my age 2 there is a good chance he would walk. We tried every excersise possible to get him to reach that milestone but he just wasnt ready. He was no way near sitting when he turned 2 and we lost all hope, we were told he wont walk and wont talk. It was just devistating.

    Now, hes 3 coming up for 4 and has just learned to sit unaided. He did it, it was a long hard struggle but he did it. He still cant talk or walk and we arent sure if he ever will, but we lost all hope of him ever sitting and he proved us wrong.

    If you speak to your Paediatrican they should be able to give you little markers to guess how they might come along but the thing to remember is each child with CP is totally different. Ive never come across a child just like Joe, similar but not the same.

    Just try to stay positive, not sure if it will help you but something my mum said to me (sometimes on a daily basis!) "this too will pass" The feelings of sadness, anger, lonelyness, unfairness, they WILL pass, and when you get a smile or cuddle from your little one it makes it so worthwile.

    Joe has visual imparement and we were basically told he would be blind. He looked me right in the eye for teh first time a few months ago and smiled. My heart just broke. Whether he can see me or not, he knows who I am and I can make him happy.

    Same goes for you. no one knows your child like you do, and whether they will be in a wheelchair like Joe or able to run faster than a cheeter, no one can give them more love than you can ... and no one will love YOU more than they do.
    Keep in touch and stay strong

  • renacahill
    renacahill Member Posts: 145
    I agree so much with the other posters. It is almost impossible to tell how CP children will develop and no one ever seems the same as another! Has your daughter had an MRI.? This will show where any damage is and it is an indicator of what the CP will be like. Having said that another toddler with the same damage as my grandson is totally different, and some children with severe damage have hardly any effects and vice versa! As I said its only an indicator! Take a pinch of salt with what the doctors say, they always seem to paint the worse picture.
    My grandson rolled over at 10 months but then didnt bother again till he was 17 mo. Now we cant stop him. His sitting (he has just turned 2) is very wobbly still and he needs to be placed there, but we were also aware about the sitting at 2 making it more likely he would walk thing. We have a gait trainer and what work the physio has done shows good promise that his legs can walk with a normal gait but he has v poor balance and coordination. Babies with CP often have weak necks and backs, but dont worry this improves with time and exercise. Give her as much tummy time as she will tolerate, take all the physio and OT on offer, and try for hydrotherapy, fabulous all body work out.
    We can identify fully with the despair, fear and anxiety, but it does get better with time. Make sure you also look after yourself, you can easily get burned out trying for different therapies, and with all the home physio that is needed (not to mention needless worry). Take time-out from time to time to just enjoy life and your daughter. Take one day at a time, and you will eventually get to that good place.
  • optimistic
    optimistic Member Posts: 8
    Hi there.
    My little girl was diagnosed with CP at the end of July at 15 months. I know exactly how you are feeling.
    For the first 2 weeks I was at rock bottom with the shock of the diagnosis, and things only started to look up once we started physio, and I no longer felt alone.
    We now have physio once a week and hydrotherapy once a week and we have had all sorts of equipement sent to us organised by the physio which helps me with the day to day activities. I am currently exploring all the other help available, there is so much out there.
    every day I look at my beautiful daughter and am grateful she is here, and celebrate the small but important developments. I cried my eyes out in a cafe last week because she clapped her hands together for the first time.
    The best advice I was given is look at the things your child can do, rather then cant.
  • traceym
    traceym Member Posts: 1
    I really hear your fear and pain, and relate to it.
    My son, now nearly 6 has CP Spastic Diplegia. He could not sit up unaided until almost a year old, and couldn't roll over for much longer. I was told by his paediatrician at the time that he may never walk unaided.
    We attended numerous physio sessions, and did some blocks of private treatment at the Cerebral Palsy Physiotherapy Centre (which helped massively). He began to walk unaided a couple of months after his 3rd birthday, wearing ankle splints.
    He still uses his Kaye-Walker some of the time at school (and abuses it frequently). He also has a wheelchair for medium to long distances. He can now walk around the town without his walker (sitting down for a while every now and then) for about 20 - 30 minutes before he really starts tiring.
    He attends mainstream school, and has taken it upon himself to educate his classmates about disability when he gets questions about his frame and his splints.
    I would really recommend loads of physio - especially CPPC. It's also worth getting a stander when your little girl is older as this distributes the weight evenly giving a better change of improving her gait.
    In the beginning I never would have thought it possible for my little boy to achieve what he has. They were dark days indeed when I first got his diagnosis.
    It sounds like your little girl has a very loving mum behind her. I have tried to take it one day at a time, and over the years I have gradually come to accept things about my son's disability that I would never thought I'd have the strength to face.
    I believe children with special needs are given other gifts, and my boy is really gifted at maths...and so confident too!
    Best Wishes, and keep reaching out for support. x
  • twem
    twem Member Posts: 3
    awe thank you so much if makes a big difference to have some other parents to talk to its all still up and down at the minute x
  • sarana
    sarana Member Posts: 4
    hi . how is your little one? seem to be your daughter and mine as similar issues. has she start physio and occuptional ? earlier we start is always better. we start some other therapy too. have you seen your community team yet?.sometimes this is too difficult to put the things right at the first place which take lot time and frustration.I am live near north london.if you have some sparetime (i know how hard to get spare time) we can have a chat or meet up. take care
  • Hymerkar
    Hymerkar Member Posts: 63 Courageous
    Hi Twem and welcome to the forum. So sorry to hear about your little girl, but you have come to the right place for help, support and advice. You have already had some good advice and you know you have friends here, you are not alone.

    I have posted on here in the past, but just wanted to let you know that when I was 10 months old, my parents were told that I had CP. I would never talk, walk, dress myself and they were advised to leave me at the hospital, go home and get on with their lives. That was 48 years ago, thank goodness they didnt take the doctors advice.

    With their help and determination I can walk unaided, although now I am getting older I am relying on the support of crutches and the use of a wheelchair for distance. I did well at school, passing 5 GCSE's and went on to college where I trained as a telephonist (LOL a now extinct profession but never mind). I have lead a relatively 'normal' life never letting my cp get in the way. I can drive, I was married, but now divorced, so no different to many others there! I now live with a wonderful bloke, who cant do enough for me, we own a motorhome and enjoy traveling around Europe.

    I could go on, but I dont want to bore you. One thing I will add, is that despite all I have achieved I still cannot sit up unaided!! I have several friends my age with CP and nor can they, so dont read too much into that theory. Please dont dispair at your recent news. As the other mums have said, take each day and each step at a time. CP is a complex physical disability, and we are all different. Listen to the physios, they really are brilliant and if anyone can help you, they can.

    Good luck, keep us informed. Take care till we hear from you again.

    Karen XX