Advice for future

[Fueledbycoffeealways]

Dear mumsnetters,

I am really hoping for some advice or stories to help me to best support my son.
My DS who is turning 4 next week has been recently diagnosed with Cerebral Palsy through an MRI showing hemiplegia, which affects his right side.

I feel let down by the system. For the last few years he was late with speech, walking difficulties and when I raised concerns I was was greeted with 'it's just a phase, he will grow out of it.' This was around four health professionals. It wasn't until he started pre-school and the key worker raised that there was something not right and to get it checked. We were seen at the GP the following day, hospital the following week and about 6 months later we have the diagnosis, continuous physio therapy and orthotics. He is also under OT Review.
I feel a bit like a rabbit in headlights as there has been so much information thrown our way. Obviously we do not know his developmental needs until he starts school and grows.

Please could you all advise me on if there is anything I can do for him when he goes to primary school or raise questions when looking for a suitable school. What should I be asking or looking for? What facilities will best aid him? Should I be doing anything at home?

He is such a happy a sociable little boy. I want to support him the best that I can. I have not had much first hand experience with CP. He walks one sided tip toes and has it mildly in his right hand. Although this doesn't restrict him, he has just started jumping, but his balance can be off.

Thanks

Ask to speak to the SENCOs of the schools you are looking at.
Look at how accessible the school is - e.g. is it a single building or multiple buildings, all on one level or multiple levels, if more than one level do they have a lift and does it work, are the playground and any outside learning spaces flat, toilets, size of classrooms.
Class sizes?
What support do they offer other DC with mobility difficulties?
What support do they offer other DC with motor skills difficulties?
What support do they offer with emotional regulation? (An often overlooked aspect of CP for some.)
What training do staff have?
What transition arrangements do they offer for those who need an enhanced transition?

Does DS attend nursery? If so, what support are they providing? If your area still has them, have they asked the specialist teaching service for advice?

IPSEA and SOSSEN are charities who support parents. They have lots of information about the SEN system on their websites. Including model letters to request an EHCNA if you want to go down the EHCP route.

Completely irrelevant to your question, but I would bring it to the attention of the services who brushed off your concerns.