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Cerebral Palsy guilt and coping strategies(5 Posts)
To cut a long story short, ds has shown signs of cp for months. At 7 months we are now in the process of getting investigation under way, partly due to lockdown and partly due to the rubbish wait and see attitude of the NHS around cp. Anyway just wanted some help with how to cope emotionally because I am not. I've been referred to local mother and baby mental health team but nothing is helping. I keep ruminating on what caused this/ how bad it is/ what future will be. This coupled with the fact that ds literally never sleeps longer than an hour even at night means I am losing my mind and so sad to the point that I cannot cope at all. I just can't seem to confront the idea he is disabled and as a result spend hours trying to Google how he could still be normal, which I don't think is helpful to my mental recovery. I think I am suffering from trauma from the birth in addition to all this but the team around me don't seem to have any suggestions to help, to be honest I find all it does at the moment is upsets me further. Please if you have any positive cp stories let me know as ATM life is unbearable.
How is your son presenting? Is he hitting any milestones?
My daughter had a terrible birth and we were told she would have cerebral palsy at 5 days old, so I think it was a little easier for me as any milestone she hit was a gain and not a loss iyswim. We were told she would never walk or talk. Her brain damage wasn't as severe as feared and she eventually met all her milestones - she used makaton at 18 months, spoke (badly) from 3, more clear by 5 and fluent by 6/7
She walked her first steps at 3, she went to mainstream school and coped, she was never destined for high grades but she got some GCSE's, a B-tec and then finally a performing arts degree at 23
She is in her 20's now - she walks and talks like she is drunk - wobbly and slurs a bit, her biggest problem are hand/arm intention tremors - a bit like parkinsons so daily stuff is tricky for her. She struggles a bit with retaining information but she lives a good life. She does get pain in her joints and back and she needs lots of rest but she manages it well. She's still at home but I don't think she will always need to be here and she will live independently, probably with visiting carers to help her keep on top of admin, cooking etc
Those early days are scary and it took me a long time to lose the constant 'what if' thoughts. I get them occasionally but I now have the adult I was always looking for so I've come to the end - not sure that makes sense, I think when she was little, I just wanted to see her future and now we are there, I'm happy with how everything turned out.
I will say though, she changed my life - for the better. Her siblings are amazing and have a kindness you don't see everyday. I sought out other families who had children with disabilities and those people became my friends and support. I used the internet for research and support groups.
You will have to battle for support and you will have to fight to get him what he needs and you need to look after you!
Just try and keep in you head, he is just a little boy, your little boy. Love him, get joy where you can get it, appreciate what you have and mourn what you have lost, celebrate any progress - a friend once said 'we have inchstones, not milestones' and every tiny inch is worth so much more to us as everyone has worked so hard to make them
It's hard I know
He has a clear preference for his left side along with severe arching, reflux and constipation. I'm just feeling so sad and guilty about it that I cannot really see past it right now.
I have a four month old and have been told that very likely has CP following brain damage from loss of oxygen in birth. I identify so much with what you write. All the love in the world to you and your DS. I’ve been lucky to get support from psychologist from NICU. I hope you can get some via your GP or HV? Are you able to self refer to perinatal mental health team? It is hard xx
Sorry to hear you are struggling and I don’t mean to intrude (my DS has SEN of a different nature but not CP) however one thing that jumped out at me from your post is the lack of sleep. That must be making it hugely hard for you. Any time I have been sleep deprived I have struggled with mental health. Is there any way you can focus on getting a few nights of proper rest? You might then be able to process and deal with things more easily.