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New diagnosis of spastic diplegia at 14 yrs

Mandalea98

Hello,

My son has recently been diagnosed with cerebral palsy that has only become evident since he had a teenage growth spurt. On reflection he has had mild symptoms all his life. He is now unable to straighten his legs, walking/standing has become uncomfortable and he is experiencing some bullying due to the change in his appearance and manner. I thought he was taking his diagnosis well but just yesterday he admitted to feeling at a loss as to how to deal with the bullying as he feels the abuse is justified.

Are there groups for young people where he can find out more about his condition? He is struggling with physio as it is painful and he 'can't see the point.' Consultants are now suggesting surgery due to his non adherence to treatment plans.

I am a children's nurse and I feel really guilty that I missed this in my own child and at a loss as to how to help him. Any advice gratefully received.

Thank you in advance.

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Comments

Sam_Alumni

Hi @Mandalea98 welcome to the community.

Firstly, you should try and let go of the guilt, I know as a mum, we generally feel guilty all the time about everything but as you said, this only really became apparent with a growth spurt.

14 is a tough age for any kid, we just want to fit in at that age and so to get a diagnosis at this time in his life must be really tough for him. Perhaps he could do with some talking therapy for him to process all this new information?

We have lots of information for young people.

Firstly there is this video about bullying and disability, along with help and support contacts. It is a quite upsetting film of a young girl talking about her experiences.

CP Teens UK is a dedicated support group for young people with Cerebral Palsy so is definitely worth a look.

This page is full of links to useful organisations for young disabled people and their families.

It would be worth you having a search online for any groups local to you, search for 'teenage cp groups' and your area to see what there is. You could also ask at the hospital and GP surgery what groups there are near you.

We have a really caring and lovely community here, so I do hope you stick around and get involved. We have so many brilliant members who have such a wealth of experience, so I hope you can get some support, information and friendship here.

Mandalea98

Thank you. I will take a look at the links after work today. I have spoken to the school who offered counselling and, surprisingly to me, my son is happy to give it a go.

I have had a little look through previous discussions on here and will continue to look. Any information is gratefully received. I/we have a lot to learn. The school asked yesterday whether his ?dyslexia could be linked to CP and the truth is i just don't know. I have a child with dyspraxia and I just know about that. He has obviously had it all his life and we have managed it really well. This feels like it has come out of the blue. I realise its always been there but for us its still a new thing that we all need to learn about.

Thanks again.

Sam_Alumni

That's so positive @Mandalea98 that he is willing to try the counselling! I think you are right that it's a new thing for you all and new things can be scary and overwhelming, but I'm sure you can get lots of information and learn all about it.
All disabilities are different but I think if you asked anyone with a new diagnosis, that they would feel worried and uninformed, but as this becomes your norm, you learn so much about yourself and your impairment and soon feel like an expert.

Best of luck to you all, I hope you enjoy using the community, our members are lovely.

Sam_Alumni

This post by @mhewartson about her diagnosis of CP at 21 might be helpful to you.

@katyhump also wrote about her son and CP here.

@jeanarussell and @DannyBoy2541 do you have any advice?