Mild cerebral palsy and social delays

[Lily27]

Hello to everyone on this board. As a mum of a little boy (5.5) with cp I thought I would post on here to see if others have similar experiences. I’m looking for stories on how things are developing for other children with a similar condition. My DS suffered from hypoxia shortly after birth and an MRI scan showed some scarring but not much and a diagnosis of mild cp was given at the time. He has low muscle tone and dystonia; he can walk talk and appears to learn well - he is mainstreamed with an EHCP. His speech can be difficult to understand although improving and he’s wobbly when he walks so he is distinctly different to other nt children even though his cp is mild. One thing we have noticed are his poor play skills with his peers. On his own and with adults he plays well. He doesn’t know how to initiate play with children and DH feels that the solution is to organise play dates with peers so he can learn and develop. In my view he just becomes shy and often not saying much and not cooperating in play, refusing to join in. I feel he lacks confidence and doesn’t know how to behave or what to do. I’m so worried this will set him back and he will be friendless and will lose heart. He is such a lovely happy sunny child with us but he drains of all personality at these play dates. Anyone have any positive stories of friendships and social development? Apologies for such a long message

Hello OP

My DD also has mild CP and it has caused her some social issues. In her case she is not withdrawn, but she is very impulsive, has poor emotional regulation and was slower than other dc her age to learn not to hit or shout or to take turns etc.

At your son’s age I was on eggshells during each playdate because I didn’t know if she might have an outburst. She was also very tired after school days which made it worse. However as she has got older (she is 8 now) this has improved greatly. She now has a really nice group of friends, some have their own quirks too.

I wondered if your DS has had a hearing test? Just in case that might be an issue. However this may be a complete red herring.

Minipie, thanks for much for your post. It was interesting to read, and heartening too that things have improved for your daughter. My DS also has some emotional regulation issues too - when he gets angry, he gets very very angry - yesterday he threw my phone, kicked the bin, slammed doors etc. all because of some small thing he wanted. later he felt guilty and apologized but has no self control in the moment. As with your daughter, he gets very tired too and I feel for him as he has to work so much harder than others, at everything really - moving, talking, eating, sitting up etc.

Interesting that you asked about hearing - he had grommets fitted last week at GoSH, surgeon told me a lot of glue flooded out of his ear so it turns out he had pretty bad glue ear. That wouldn't have helped him all this time either.

Does your DD learn well? Does she have a TA? I'm a bit anxious about the transition to Year 1 and how DS will fare with more structured learning. so far, he has shown no sign of learning disabilities - he is curious and observant and meets his cognitive milestones but I've noticed that some of the others in reception read better than him and are ahead in maths. I assume he will catch up, really hope so.

Hello! Ah if he had significant glue ear then I am not surprised he was unconfident in social situations - especially group situations with young children, as they don’t always talk terribly clearly. Hopefully now the ears are clear then he will find that a lot easier, and his speech should improve too.

Yes, DD is pretty academic, she took to reading very quickly and is in the top sets at school. No TA. So her CP has not affected that side as far as we can tell. She actually found y1 easier as it was more structured so less opportunities for social discord, plus she was less tired by school then. It helped that she is older in the year, October baby.

I wonder if your DS’s glue ear may also have affected his learning if he couldn’t follow what the teacher was saying? Tiredness will also affect learning, especially in the afternoons. When is his birthday?

Hi minipie, thanks for your message. I meant to reply earlier but just too much happening right now. The grommets have started to make a difference to his attention and speech, and I'm hoping for more improvement on both fronts. I'm not sure how mild your DD's CP is - my DS cannot run as yet and finds it hard to keep up with other children in the playground and park. He stays on the sidelines at these times and watches others, and that really breaks my heart, and I wonder what's going on his mind when he feels he can't join in.

We haven't yet explicitly told him he has CP although that conversation is coming soon I think. I just don't know how to talk to him about his difficulties and he is still very young. Did you have these conversations with your DD, it sounds like she has probably milder CP and what was she like socially at 5, did she throw herself into group activities?

It's so exhausting, DP and I have near daily conversations; we are trying to give our son every opportunity we can, and as much fun and experience as we can but I really hope he doesn't lose heart.

Hey no worries at all.

DD has always thrown herself into activities and social stuff, no shyness or hesitation, however she definitely is slower especially anything involving running around. This has often upset her (especially in reception/y1) as she can’t really play these games as she can’t keep up. There were a few things that helped with this - school started a “quiet corner” so she and few others who got overwhelmed by the playground could go do quiet activities at playtime. Also she got very into swapping football/pokemon cards which is obviously less physical.

As well as being slower she gets tired much more quickly and so although she will want to do all the activities and join in, I know she will be exhausted (and behaviour will go downhill) after a few hours. So I kind of have to limit her iyswim as she doesn’t want to miss anything? It’s often a fine balance between letting her do all the activities because it’s good for her to join in, and she wants to, vs managing her tiredness and avoiding meltdowns.

I can’t remember exactly when we discussed CP with her. I don’t know whether it was too early maybe - she has definitely felt very upset about it. But then if we’d never told her, she’d just think she was slow/clumsy/tired for no reason which wouldn’t be great. Tricky one.