Child with Cerebral Palsy

[FigTree123]

Hi everyone - I'm just wondering if anyone is aware of any support groups, or has personal experience of a child with Cerebral Palsy? My DS is fairly mild but does affect him in a number of significant ways and I quite often worry about how school will be for him, how he will cope as an adult and all the other worries I'm sure all mums have about their children! I don't really have anyone to talk to about it. Family are very supportive but I don't feel like I can vent honestly about how unfair it feels sometimes or to admit when I'm having a bad day. Hope this is ok to post on here. Thanks

Scope run the CP Network. It is online.

Depending on where you live, there are some local charities who run support groups specifically for CP.

If you don’t mind a support group with a mix of needs, you could approach your local parent carer forum.

We have a pub thread on SN Chat here if you want to join us. Posters’ DC have a range of needs.

I have a DS who has a strange ‘CP like presentation’ description because HCPs can’t agree whether he should be diagnosed or not. Some think so, some think other explanations are responsible. Hoping to get a call one way or the other soon.

@flawlessflipper thanks for your advice. I'm in Scotland so we're supported by CP Scotland. They signpost to forums and the like but I've never been able to find any local groups or people I could meet up with. I'm maybe expecting too much. The mumsnet thread you shared sounds great, I'll have a look tonight.

That must be difficult with your son not really knowing what's going on. Has he had any testing or due for any? We had an MRI scan which confirmed it but doctor was fairly certain before that.

I don't know of any support groups in Scotland but I wonder if Contact or Enquire might be able to signpost you. As DS gets older, you might find parents via joining disability sports groups. Even if DS doesn't remain in the group/club once you have made contacts.

DS has had a huge number of tests, including multiple scans and genetic testing. He has a lot going on, which complicates the picture. A complex mix a physical, medical, developmental and psychological difficulties. So unpicking it all isn’t straightforward. Hence the HCPs’ disagreements. This has gone on for years, but a current admission has brought it to the fore again. It is interesting you posted this thread because I had posted about this on the Pub thread at lunchtime.

@flawlessflipper funnily enough I just received an email today about a local sports programme for children with motor impairments that's starting up - skateboarding, parkour and other things, so I'm hoping to give that a try and maybe meet some mums that way.

That sounds so difficult and confusing. It's hard when you don't have a diagnosis and you're left feeling like you don't know what the long term plan is. How old is your son?

Hopefully the group will be a way to meet other parents. Someone there may know of a local support group too.

DS1 is a teen so much older than your DS.

TBH, a diagnosis wouldn’t change anything for us. DS has all the support, treatment, adaptations, etc. he would have if he was diagnosed. It is more the not knowing and frustration the non-diagnosis description some HCPs involved have taken to using brings.