Looking to connect with other who have similar questions

Alma2702

Hello Scope community, I want to introduce myself. I am the mum of a 9 year old with CP. It's relatively mild (GMFCS 2) so he can do quite a bit, and is at a mainstream school. I face a number of issues from to time regarding his development, and wondered if I could connect with others who have similar questions or concerns.

Thanks!

Alma2702

Currently he is suffering from a lack of friendships. He finds it difficult to run about with the boys (he can walk but not run or play competitive sport), and his group of girl friends who he played with until last year have now moved on - this is a typical girl/boy split that happens socially at this age. the problem is that he has no one to play with, and he is lonely. I wish I could find a child/children who could play with him. I'd be interested in any ideas/suggestions. he is a very happy and playful boy who loves free play, Roblox, board games, pretty much most things. His speech is affected, it is a bit slow and dysarthric but not severely affected. Any idea, suggestions, welcome! His loneliness and alienation are worrying us parents - we live in such an ableist world and it feels like for even this relatively mildly/moderately affected boy, peer friendships are difficult. Thanks for reading.

KittyTinker

My son is 22 now and has same grade of CP and although very popular at school, everyone liked him, finding good friends was hard. Could you speak to his teacher, SENCO or TA to see if there are any other children struggling to make friends who may have similar interests. Are there any after school clubs he could go to. I found that inviting friends to our house was best. Does he have cousins or the children of your friends you could invite to play dates. My son did have on and off friendships throughout his school life but I definitely had to be the parent that did the hosting running around etc.

pooleemily29

@KittyTinker Hi Kitty my names Emily and I suffer with Cerebral Palsy while I'm aware that your son 22. Would you like me to be his friend I could certainly give him the support he needs I'm 30 now but I was once his age I struggled to find the right friendships too after I left primary school and when into secondary. The offers there! Emily ❤️

pooleemily29

@KittyTinker it's @pooleemily29

KittyTinker

Hi Emily thank you so much for the kind offer. My son is at University now and is much happier. I always hoped he would find his tribe when he got there and he really has. He’s found people with the same interests and the maturity to see past his CP. He’s not on the scope forum but the next time I see him I will mention it.

pooleemily29

@KittyTinker if you show him my profile @pooleemily29 I'd be more than happy to talk to him. 🙂

pooleemily29

@KittyTinker The type of Cerebral Palsy I have is Hemiplegic Cerebral Palsy @pooleemily29

Alma2702

Hi, thanks so much for replying and the suggestions. We are trying quite a few things along the lines you mentioned. He goes to a one form entry primary, it's lovely and small but that also means they haven't got the staff or means to put together groups of children during play time. It's all free play and he really struggles. No cousins close to his age I'm afraid, sadly. We will keep trying to set up playdates for him.

I'm really interested to know the experience of your son since he has the same grade of CP. How did he get on at secondary school? Are you London-bassed? Did he manage to find more friendships? You mention he's at uni and thriving which is fantastic.

Thanks again

KittyTinker

My son went to a small rural Yorkshire primary 400ish students then the local academy 800ish. He has Athetoid CP there was one other girl at secondary with CP but they had nothing in common. He does have a younger brother which I think has been helpful but he also went to clubs, judo, games club and even debating club in his later school years which was great for his confidence because it focused him on his speech control and people had to listen.
He had some friends at times over his school life and still keeps in touch with some boys from 6th form who were a year older and in the debating team. He’s also a bit of a force of nature and knows his own worth so doesn’t put up with fools. But he really found his feet when he went to university. He met his tribe. It was worrying for us as parents and has had some challenges but has been the most amazing time. He started as an undergraduate in 2021 graduated last year and is now doing an MA. He’s met more students with disabilities at Uni lots on the Autism Spectrum and several with CP.

pooleemily29

@KittyTinker that's great im really happy that your sons doing so well at uni. I too found it hard when I went primary rk secondary whilst most of my friends were able bodied I like I rely needed someone in my ball park. I had one friend who also went to uni after leaving school time as me but now im looking even harder to find friends with CP. I understand how it hard can be to find people that are let's just say not in our situation to speak. But still I'd really like to help in any I can with your son Kitty if it just a talk on here of course I know he's on the community but I really think it would help him. Emily ❤️ @pooleemily29

KittyTinker

Thanks Emily I will show him this post when he next comes home for a visit but I can’t promise that he will be in touch as he has just recently been on a couple of dates with a girl and probably wouldn’t want to jeopardise that by contacting other girls.
Are you in any clubs Emily?

pooleemily29

@KittyTinker I was but I just didn't feel comfortable with them. I went to a group for people with disabilities called ME2 but that got disbanded and I've joined writing groups not really my age group. Finding any groups is like finding a needle in a haystack because the government have cut everything 🙄. Which is another added pain in the bum. I too have been struggling with finding that right person. Good on him for having the confidence to go on dates I say that's fantastic that he's done that. That's another thing I struggle with dating. I'd luke someone like me with CP but whether I'll actually the confidence to do what your son did that's a different story. @pooleemily29 ❤️

KittyTinker

Hi Emily my son met this girl through a shared interest, they both study the same subject but at different universities. I don’t post on Scope very often, just check in from time to time but have you asked any of the advisers on the Scope website if they know of anything that could help. I see that they do online meetings sometimes. Also I can see that school was not a great experience for you but would further education courses at a local college or university be something you could think about?

Richard_Scope

Hi

CP Teens is an excellent organisation for young people living with CP.

CP Teens UK

And my colleagues @Lucy_Scope @SaraC_Scope and I run the CP network. We meet monthly online and have face-to-face meet-ups in Wrexham and Leeds.

Cerebral Palsy (CP) Network | Disability charity Scope UK

Lucy_Scope

Hi Alma2702,

Your concerns are valid. As people have mentioned on here, it would be worth speaking to your school's SENDCO.

I am setting up a parent support group online. The first meeting is on Thursday 26 June from 11:30 until 1PM. You can get a free ticket on Eventbrite.

If you have any questions, please do not hesitate 😊

Best wishes,

Lucy

 

SaraC_Scope

Morning @Alma2702

Facebook have a great page for families and carers of children with CP. Cerebral Palsy UK It's a space to connect with other parents, ask questions and potentially find local networks that you or your son could be part of.

Alma2702

Thank you Sara will look it up, very helpful.

Alma2702

I want to say thanks to all those who replied. Maybe I'm missing something but is there no reply button? Thanks to all though. very helpful info and context. Wish you all the very best