5.5 yo son with CP, PVL, Tourette's etc, advice pls

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Hi,

My son is 5.5, he has been diagnosed with Periventricular Leukomalacia, Spastic Diplegic Cerebral Palsy and Tourette’s. He also has suspected ADHD and high functioning autism, OCD traits and anxiety. He is on the waiting list for CAMHS and we’ve recently paid privately for OT assessment which was a huge eye opener. My son can walk and run, he has issues with his legs and arms but mildly, the CP and PVL mostly affect his brain, he is cognitively impaired but bright if something interests him. He is in mainstream school with no TA support at the moment, the OT report says he needs a TA 60% of the day as well as other 121 support, not yet put in place by school . His main issues at school are severe lack of focus and he is frequently aggressive with his peers, 3 days this week he has been physical with others. The SEN support is not great, today his teacher said ‘there are other naughty children in school’. He’s not naughty, he has no emotional control and needs help working on dealing with emotions.

I am unsure where to turn, does anyone have any advice? School are about to apply for EHCP. Is mainstream or specialist provision best for him? I’m really struggling with how I can support him for the best, thank you

Is he in yr 1? I think you need to push forward with the EHCP as quickly as possible. I don’t think you can access a special school without one in any case.

Regarding SS v mainstream, it’s hard to say. Hopefully someone with a similar dc can shed some light. Mainstream with 1:1 support could be very different for him but ultimately you need a supportive school. What are the head and SENco like?

Hi, thanks for the reply. Yes he is in year 1. His reception teacher continually asked for more assistance with him but school ignored her till I complained. The OT report highlighted that he is struggling in all areas academically. School have not given him any TA assistance and he is floundering pretty much. In mid December we met with SENCO and went through OT report and she assured us they'd put everything in place and they weren't relying on the EHCP for funding they could implement all the recommendations straight away, but so far they haven't implemented one thing. Apparently they are meeting next week to discuss his behaviour, I am going to ask when so I can go. I really feel if the SEN support was better he'd be able to focus better, he can't follow instructions and needs constant reminding so I think the behaviour comes out as he gets agitated that he doesn't know what he's doing.

I am going to ask for a meeting with the SENCO next week or week after, if nothing happens following that I'll ask to meet the head. It annoys me that they call him naughty even though they know all of his issues and are not doing anything to support him.

Thanks for listening!

It’s appalling the school are calling any children naughty, behaviour is communication after all. Is it a big school?

I think meeting with the SENco is a good next step, he needs proper support.

The assessments that are part of the EHC Needs assessment should make recommendations to meet his needs.

It should be apparent if these needs can be met by mainstream or not.Even if it doesn't specifically mention special school, things may point to it eg "small class size", "calm quiet environment."

The main thing to be aware of is all the reports need to identify needs and specify and quantify provision. If you get woolly reports that say things like "regular", "would benefit from" "access to"(and sadly all too often reports commissioned by LAs often are) you then get an EHC Plan that is not worth the paper it is written on, and is totally unenforceable.

The LA must seek advice from a range of people. The list is set out in Regulation 6(1) of the Special Educational Needs and Disability Regulations 2014.

• the child’s parent or the young person;
• educational advice (usually from the head teacher or principal);
• medical advice and information from a health care professional;
• psychological advice and information from an educational

psychologist; -advice and information in relation to social care; -advice and information from any other person the local authority thinks appropriate;

• where the child or young person is in or beyond year 9, advice and

information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and

• advice and information from any person the child’s parent or young person reasonably requests that the local authority seek advice from.

The LA is legally required to seek all of this information as a minimum.

You already have an OT report. I would also request that the LA seek SLT advice, and if autism/ADHD are diagnosed, advice from an autism/ADHD specialist.

Info here:

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

A checklist to ensure your child's EHCP complies with the law.

www.ipsea.org.uk/Handlers/Download.ashx?IDMF=afd8d11f-5f75-44e0-8f90-e2e7385e55f0

And if school start faffing about and try to delay the application for the EHC Needs Assessment, apply yourself. The link above tells you what to do.

Thank you for the in depth information, it is much appreciated. SLT have reviewed him, I am waiting for a copy of the report, school have seen it already. EP have also seen him and concluded that he has 'complex difficulties'. EP are next due to review him in April. The SENCO said to leave it all with her and said she's never yet had an EHCP turned down, so I was happy leaving it with her but I don't think she has progressed at all. I will ask for a meeting with her and if she hasn't done anything I'll complete the EHCP application myself (I'll contact IPSEA).

Many thanks for your help :)