How to support DS (16)

[samecrapdifferentname]

Wasn't sure whether to put this here, in Further Ed, Secondary Ed or what.

Anyway. DS is 16, and was born with Spina Bifida and hydrocephalus. His hydrocephalus was stable at birth and remained so (he has enlarged ventricles but no build up of pressure and no shunt). After the first year of measuring his head we were pretty much told not to worry about the hydrocephalus as everything seemed stable.

Late 2019, having started GCSE course, it was clear that things which had always been described as 'just how DS is' by school were in fact quite major barriers to him being able to work in the way he needed to. Parents' evening chat changed from 'well he's not very academic but he's a lovely chap' to 'he's just not trying is he?', when actually he was trying bloody hard.

So I got in touch with a charity who advised us that what we were seeing (slow processing, little to no perception of the passage of time, disorganisation, poor short term memory) are actually classic hydrocephalus issues, and also that since he was born there has been research indicating that Spina Bifida itself can have cognitive effects, even without hydrocephalus.

Anyway, went back to school with this information in January 2000. They made all the right noises about support etc but really that was support in assessments (extra time, breaks etc) rather than support with learning. Then we went into lockdown and everything changed anyway.

He's now at an FE college doing a bTec and retaking his maths. I've sat down to try and support him with some maths this week and it is shocking how poor his retention of information is. We sat down and successfully went through a topic at the beginning of the week and he seemed to grasp it. Looked at it again last night and it's as if he's never seen it before.

He finds all this very upsetting and gets defensive and wants to get on with it on his own, with no support from me. This is understandable but I just don't think the information is going in.

I have no idea how to help him. Family life is not straightforward (other DC also with SEN) and I feel totally ground down by it all, as does he I think.

I just don't know what to do and any suggestions would be great. I haven't spoken to college yet as I don't know the form there; they seem to be encouraged to be so much more independent I don't know how appropriate it is that I contact them.

Any ideas? - Or suggestions I should post this in a more active part of Mumsnet - I really wasn't sure where.

I would contact them. People are obsessed with not doing anything for their kids to 'make' them independent. You are not stopping him being independent or being a 'helicopter parent' you are doing all you can to enable him to (hopefully) cope in the world. He may be 16 but he has SN and still needs support.

The question is though - how will he feel about you talking to college? He may well find out and could react very badly and feel you've betrayed him. Can you talk to him first and see how he feels about you contacting them on his behalf?

Do speak to the college, sooner rather than later. They can't help if they don't know and you don't want the tutors stereotyping DS as lazy.

I recommend applying for an EHCNA too, IPSEA have a model letter you can use.

Has DS ever been assessed by an Ed Psych?

SN chat and SN children are generally busier than the SEN board.

I would apply for an EHC Needs assessment.

Information and model letter here:

www.ipsea.org.uk/ehc-needs-assessments

Thanks all.

He's happy for me to contact the college, it's something we've talked about before. (I will check again before doing so, though.)

We are in Wales so the system is different; in fact the new ALN system came into force at the beginning of this month.

His sister has had a statement since she was three so I haven't massively kept up with changes in how it all works.

He's never been assessed by Ed Psych - I don't think school thought there was any need.

I'll contact the college in the first instance.

In which case apply for an IDP, SNAP Cymru can help.

An EP assessment sounds very much needed.

Thanks everyone. I've had some very encouraging conversations with college and things are being put in place for DS which is great.

I really need to get a handle on how the system should work though. Apparently IDPs for new students at FE colleges come in next year and because he hasn't come to them with anything else in place it seems like they don't quite know what to do with him.