early help assessment, do I want this or not?

[elliejjtiny]

DS2 (aged 13) has Ehlers Danlos Syndrome type 3 and suspected ASD. We also have 4 other dc, 2 of whom have autism, 1 has moderate learning difficulties and 1 is NT.

We've been trying to get an official diagnosis for DS2 but we keep going round and round in circles. I'm currently half way through a course similar to cygnets but for parents of undiagnosed children but I'm not learning anything new from that.

We know more or less what we are doing but it's getting harder now that he is going through puberty and has all these new emotions flying about. He attempted suicide a few months ago because he asked a girl out and she said no. It was a complete impulse decision and he went from fine to overdose in about 10 minutes while I was dealing with his younger brother's meltdown over getting dressed.

I think we are doing all the right things but I'm very conscious of the fact that if I get it wrong then he might die and I keep trying to do everything I can to prevent him getting stressed out. CAMHS discharged him because talking about his feelings upsets him and they thought they were making it worse. He also gets upset by queues, loud noises and the idea of people finding out he is "different".

What I've been asking for is DLA (not just for the money but for things like being allowed to skip queues at theme parks and go to "quiet sessions" at the trampolining park etc. We get these for my 2 dc with ASD but DS2 really benefits from them as well), an ehcp and an autism assessment. We have now been offered early help assessment instead. I've looked through the leaflet and it seems to be about housing, money worries, unemployment etc, none of which we need help with. I'm worried if we say yes to this we will be wasting time with more appointments we don't need or patronising advice about trying a fidget spinner or ear defenders.

In my area to get an asd assessment you have to have an early help assessment.
I've found it very patronising (as if they know better than me), I feel dictated to, questioned when I refuse support (because its a tick box exercise they try to force things on dc that are inappropriate), and frustrated when they say they'll do something and they don't. And meetings every 8 weeks with so many professionals (who don't even know my dc). I'm using it as a means to an end. I've got one child on the waiting list, just waiting on getting the other on the list and then I'm going to refuse to cooperate.
Of the 7 professionals only one has made an effort to meet /get to know my dc the rest do not and rely on what the computer says. At the last meeting only 3 turned up (one of whom was late, one left early) and everything was 'we'll have to ask so and so and get back to you'.
I also find because dc have medical and sen needs that they can't seem to deal with the medical side of things as they don't have the experience /don't ask me or dc just make assumptions not realising that illnesses can have different effects on different people. One of dcs illnesses is rarely seen in children and at its best is an inconvenience at worst causes amputation (dc has quite a bad type but stable with medication and lifestyle changes /adaptions) teacher has it but is not medicated and doesn't have to make any adaptions but thinks she understands dc, so doesn't listen to what is needed because she knows best.
If I was you I'd make the decision on what help you need and do you need an eha to get this support. I'm sure for some families it's useful, however I've always been proactive and seeked out the support my dc need without intermediaries. You can always try it then refuse to continue if it's not useful.
Best of luck with getting the support dc and you need it's a hard continuous slog but worth it.

I would accept the early help referral, but in addition to an ASD referral, EHCNA and DLA, not instead of.

Even better would be a carer's assessment for you and social care assessments from the disabled children's team for your 4 DC with additional needs. Social care assessments could help with respite, direct payments which could include PA hours, another pair of hands for you or money towards a cleaner for you.

You don't need anyone to OK applying for DLA or an EHCNA, so I would just apply for them now.

Thankyou both. @Landslidelife I find that with my 8 year old's medical issues the education people try to offer incorrect medical advice at his send reviews. At his school entry planning meeting the ed psych said that we should be trying harder to avoid him having so many operations when he started school as it would affect his school attendance! And said we should give him less drinks to reduce the fluid on his brain!

We had a lot of pointless meetings and the wrong kind of support in the early years when dc1 and dc2 were little but over time we have got to the point where we only have the support that is actually helpful now. But with ds2 now having new issues with his mental health I am finding I don't understand how the system works.

DS2 doesn't have any other professionals, just us and the school so not sure how a meeting of professionals would work. Would it be just me, dh and the senco or would they invite a load of random people who have never met ds?

@10brokengreenbottles I have started filling in the dla form for ds2 but with no diagnosis of ASD and no ehcp I don't have much hope of it being granted. He had dla when he was little but was turned down at renewal aged 10. They said at the tribunal that his ehlers danlos syndrome wasn't enough on its own and no ehcp meant he obviously didn't have any care needs as he must be fine at school. The primary school senco wrote a long report that we included in the application but the dla assessor said the senco knew ds2 too well so couldn't give an inpartial opinion of his needs.

Where do professionals such as that EP get their ideas from? How ridiculous!

You could accept the early help assessment purely to use it as evidence for DLA. Do you have copies of CAMHS letters and discharge letters from DS2's suicide attempt?

TAFs will include your early help worker as well, and other professional could be asked for their input. For example, CAMHS are likely to be asked to explain their excuse for discharging DS. Your other DC's schools and any professionals involved with them may also be invited.