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My baby boy 14th month and diagnosed with CP

msujb Community member Posts: 9 Listener
edited June 2014 in Cerebral palsy
Hi everyone. Im Harry's dad whose been reading this forum for a number of months now. Just thought I'd share my story with you. Harry was born going through some major difficulties during delivery due to total negligence.........thats another story!! Anyway you can imagine we were both just relieved he was here and after eventually taking him home he seemed to be coming on fab until we noticed he was having difficulty picking things up. Of course now its not only grabbing things but he can't crawl........though he can roll over all the time!!!!.........sit up yet. He wants to be on his feet constantly though, walking everywhere when you hold onto his upper body. There are some heart lifting stories on here which I have found so positive at a very negative time of our lives. I have even printed some stories off at work to show my wife. I know its best to take one day at a time but I can't stop thinking about the future and what it holds. Thanks for all your positive stories.


  • Blusoop
    Blusoop Community member Posts: 6 Listener
    I too have a 14, almost 15 month old boy who has recently been diagnosed with CP (right hemiplegia) sounds like they are at similar point. Billy is rolling but not crawling. Tries to stand all the time, Physio has been very good and says he needs to shift weight to right hand side. Billy's could stem from a Meningitus-like infection he had at 11 weeks.

    Hearing positive stories has also helped me and my husband through the difficult times since diagnosis. We have met some incredibly helpful and genuine people too - or SCOPE representative was wonderful.

    It is a very difficult time but for the sake of our sons we have to be proactive which is very hard when you are still reeling from the diagnosis. I am so thankful there is help out there like SCOPE and Hemihelp.

    Wishing you all the best
  • TP
    TP Community member Posts: 8 Listener
    I remember this moment at fifteen months as though it were yesterday. Here's a story - sixteen years later. My son has had wonderful care. He has worked hard. He had botox before people used it to smooth out wrinkles. It helped him move from a K-Walker to sticks. He had multi-level surgery which has helped him stop sinking and has allowed him to continue to stay on his feet. He has coped well with being "different". He has survived bullying and insensitivity at school from both teachers and students. He has taken overt discrimination on the chin with dignity - Fulham Prep, City of London School for Boys, Dulwich College (among others) - be ashamed. He has been embraced, protected and supported by dozens and dozens of others: A football club, friends, teachers - the headmaster of a wonderful "academically challenging" school who was prepared to take a chance. He has been inspired by and inspired his brother and sister. He has seen the good and bad of the human condition. He has achieved 9 A*s and As at GCSE despite the educators who insisted that it wasn't appropriate for him to be in main stream schools - ah, the unexpected consequences of league tables. The physical challenges of disability are so much easier to cope with than the unexpected and invisible discriminations and humiliations that lie in wait. But the extraordinary result is that he has changed the attitudes of some, accepted some tough lessons and developed into a strong positive unyielding individual who acknowledges his own limitations but has developed aspirations that would stretch disabled and non-disabled alike.

    I had no idea at the beginning of the journey, sixteen years ago where it would lead us - (and we're still not entirely sure!). I have learned more from him, from the disappointments and the successes, from the courage of my son and the cowardice of others - from the kindness, generosity and love of those we have met along the way - than I ever expected. It is a test we didn't expect to take and one which we couldn't afford to fail. There is one thing I can tell you with some certainty: Embrace the future, take it head on - there's no other choice.
  • hilsflynn
    hilsflynn Community member Posts: 24 Listener
    Thanks TP for your wonderful story of your son's and your journey so far. Positive and inspiring and the kind of journey I hope we are headed on with our 3 year old boy. It would be lovely but naive to think that discrimination (overt or otherwise) is not going to happen, so I hope that I am giving Harry the strength to deal with it in as positive a way as he can. Always onwards and upwards.
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