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SN undiagnosed genetic conditions

This forum is for Mumsnetters to discuss undiagnosed illness.

I’m becoming so angry and depressed at how the school are dealing with my child!

2 replies

Nikki037297 · 10/10/2021 09:19

My child is 5, he’s in reception and he has multiple disabilities which we are waiting for genetics testing to see if we can link them all together, he has since been diagnosed with sever autism and sever global development delay, he’s almost deaf, his sight is not good, so the school he’s in is mainstream he went to the nursery there last year so he never did a full day, he was sent home early every single day! Some days it was 10am, other days 11am some days 1pm, he was supposed to be there 9-3, this year he’s in reception and they are sending him home 12pm every single day! They say they need to wean him in gradually, one day they brought him out he was breaking his heart because he wanted to stay! I had a bit of a kick off and rang the head about this immediately and she was on the teachers side that this was just a bad day for him I said no he wanted to stay but you were not allowing him too. They then kept him ah extra half an hour the next day. Iv asked for 3 weeks in a row are you keeping him longer tomorrow? It’s always a no, last weekend his teacher said she would call me over the weekend to discuss, she didn’t, they kept him until 12pm all week, on Friday just gone she said she same she will call
Me, she hasn’t! Iv been to view a different school which isn’t mainstream and I asked how do I get my child in here she said I need to suggest this school in my child’s EHCP, which has been on going since February and we are still not finished, I was told it would take 20
Weeks at the time of starting it, I don’t know what I can do? Iv contacted a team called Sendiaas who Iv been told can help but they haven’t got back to me as of yet. Has anyone had these issues and how did they pan out?

OP posts:
Lindy2 · 10/10/2021 09:26

I think you need to push for the EHCP to be completed.

It sounds like the mainstream school can't cope and he needs to be in a more specialised setting.

They may be delaying the EHCP because of the cost to their school budget. If they know you are looking at specialist provision that might help.

It does sound like the school communication is very poor though. They should be helping you establish the correct education environment for your child.

Imitatingdory · 06/11/2021 19:59

What the school are doing is illegally excluding DS, don't allow them to. Inform them he will be staying full time and you will not be picking him up early unless they give you formal exclusion paperwork. Put everything in writing so you have a paper trail.

You can threaten Judicial Review if the LA are in breach of the statutory EHCP timescales. IPSEA have a model letter you can use. The LA are not allowed to delay because of their budget.

IPSEA and SOSSEN have lots of information on their website and have advice lines, imo they are better than SENDIASS. Some SENDIASS are helpful, but too many aren't and they aren't completely independent they receive LA funding so will ultimately toe the party line.

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