What do you do when you feel there is nobody to help you?

[SillyColours]

I have 2 ASD children, both with their own different needs. Some days I'm just completely stuck with knowing how to help them. I don't know where to turn, who to talk to. I'm having to figure things out all by myself. One lashes out alot and I don't know how to control that but of course everyone looks to me as the only one to fix it. Who do you go to? Are there professionals out there that can come and offer advice? Once you get their diagnosis you get 6 months to ask any questions and then you're on your own. What do you do?

Have DC had SALT and OT (including sensory OT) assessments? Do they have ongoing provision? Both can help with emotional regulation.

What support are their schools providing? Do DC have EHCPs?

Some people find the books the Out of Sync Child and The Explosive Child helpful. Others find PDA resources and/or non-violent resistance resources useful. It is sometimes possible to get an NVR course funded.

Have you kept a detailed diary to spot triggers? It is easier to work on preventing escalation (at least some of the time) than deal with the dysregulation once DC have reached the point of no return.

Have you had a home OT assessment? Do DC share a bedroom?

Have you had social care assessments? A carer’s assessment for you and an assessment of DC’s needs by the disabled children’s team for DC. On their website, Contact has model letters you can use.

Also, have a look at your local short breaks offer.

There are some coaches who will work in family homes. Although they aren’t always good so you need to be careful who you use. What is available will depend on where you are.

Thanks for responding. One has an EHCP and the other is just about to have one. Salt assessments but only support they get is in school. We have no outside contact with any professionals. School point the finger at me to fix the aggression. Sometimes it can be about taking a bath or not being allowed a certain item. We can keep demands to a minimum but still get the attacks.

I just feel like everything is directed around school and at home it's all on me. We've just had 2 weeks of disregulation and it's going to escalate when school starts so questions are going to be back on me as to what I'm doing about it.

Its great that support is arranged for school, I just think it's strange that home support kinda gets ignored.

I've not thought about social care assessments, I guess I've not thought that much about me being a carer.

It sounds like you need an early review of the EHCP. If school life was easier, home life would improve too. Plus you can look at indirect provision which will also help you at home.

Oddly enough we've just had an EHCP review. I was hoping 2 weeks off and giving them a bit of rest would help but seems not.

During the review process, did you discuss amendments to include further provision?

When you say you have just had the review, do you mean the whole process is now complete (with the LA either maintaining as is or having finalised amendments and you now having the right of appeal) or do you mean you have had the meeting but don’t yet have the right of appeal?

Hello, thanks, he's had an EHCP for a few years so this was the annual review. Surprised they didn't mention extra provision, they just seemed to amend some bits that were out of date and we finished it. Perhaps I need to see how the start of the year goes and if it's not improving to talk to the SENCO again.

I know it was the AR. What I was trying to establish is where you are with that so I can advise on next steps. The AR is a process with different steps.

What should have happened is:
2 weeks before the AR meeting, advice and information should have been circulated.
Then the AR meeting.
Within 2 weeks of the AR meeting the report must be circulated.
Within 4 weeks of the meeting the LA must inform you if they propose to amend or are going to maintain as is (or if they propose to cease to maintain). If they maintain as is, you get the right of appeal at this point. If they propose to amend they must send the amendment notice at the same time to allow you at least 15 days to make representations and state your preferred placement. Then they must finalise within 8 weeks of sending you the AN. At this point you get the right of appeal.

I was trying to work out if you had the right of appeal already or not. If you already have the finalised amended EHCP, you will have the right of appeal. Therefore, you can appeal. This will help you secure further support.

Unfortunately, many find they have to drive amendments rather than waiting for the LA to offer provision or the school to push for amendments.

Ahh I see, thank you. Considering last year's review, the LA are notoriously poor at doing things by the book. meeting was mid Dec, we've not heard any more so far, but it took 6 months for a previous final copy last time and then it was wrong and I had to argue it. But the school were'nt fussed by the amount given in section F so we didnt take it further. What you have explained has never happened before. Perhaps I need to speak with the SENCo. They were bending over backwards for us when the OFSTED survey was happening, now it's all gone quiet.

If the LA doesn’t to stick to the timescales, chase them. If that doesn’t work, you can force them to act, including via JR if necessary.

If the AR meeting was mid December, chase the school about the report that should have been circulated by now.

It would help you to read the IPSEA and SOSSEN’s websites so you know what should be happen and when.

Don’t rely on the school for information. Not all schools understand SEN law. Many are schooled in LA ‘policy’.

Don’t rely on the school pushing for more support either.