To ask for people's experience of SEN provision

[RhaenysRocks]

First of all I don't want this to turn into a thread about VAT and private schools. On those threads there has been lots said about SEN kids only finding suitable provision there after state / CAMHS / the EHCP process has failed them. People comment on "where is all the outrage about the state failings". This morning there's a thread about a non verbal autistic child not in school whose relative is concerned..she had no idea there was an issue with places for such children.

The SEN board is great but AIBU is where the traffic is. Could those who have battled the system for years to get help, provision etc please tell their stories to try and raise awareness about just how bad it can be. I know there are success stories, it varies so much, but maybe if people who have had no dealings with this system find out a bit more, there would be more pressure brought to bear.

YABU...we don't need to know
YANBU...It's important to get this info out there

I think a lot of people dont understand that many specialist provisions will seek to end the placement when it becomes apparent they cant meet need (ie the child is too disruptive, non attending, violent to others other risk factors)

Then theres no other specialist provision for them so they're out of school.

Mainstream schooling needs to adapt for ALL children. Teacher training (teacher perception) needs to adapt to the changing cohort of children that don't fit the "average" profile.

Money currently being given to private specialist provision, should be directed into mainstream with better oversight of effectiveness.

SEN children are being poorly provided for in all types of schooling limiting their onward life chances.

It definitely does, and if it did the mental health of all kids would be better, but I think autistic kids with a usual academic profile would always be better in their own school. I would like to see one per county

@robotindisguise No hard disagree here that autism needs its own school.

Autism, particularly groups formerly known as Asperger's maybe not best served in specialist provision.

From personal experience I've seen poor provision, bullying, poor academic achievement and devastating low levels of self esteem.

I get that parents want to protect their children especially when younger, but spending many of their formative years excluded from mainstream peer cohort is limiting their future ability to navigate mainstream society.

@soupyspoon. When children are placed in specialist provision because of difficulties it's not unheard of that they can be re - integrated into mainstream after intensive support. I've seen this happen - but years ago. System now not serving parents/ children. Too many vested interests - hanging onto some children for funding.

Social services very fragmented and underfunded to support above.

I haven't read the entire thread. For me (parent of sen kids and previous job in working with parents of sen kids) please please do not underestimate your role. In the same way that taking a child to swimming in between lessons will help them learn to swim quicker, you also can support learning. But God, it's a bloody tough and lonely road.

Yes - very hard and isolated for many. It's not just the children being excluded from mainstream.

Special educational provision isn’t based on diagnosis, it is based on needs.

This is similar to our experience, DS got an EHCP in reception but the ASD diagnosis didn't come through till a year later. As he didn't mask at all, we had reams of evidence of ND and sensory-seeking behaviors to submit for the EHCP.

DS is in a specialist ASD base within a mainstream secondary school and can attend the mainstream lessons if he wants to/is able to - he is also able to leave and go back to the base if other children are being too loud/disruptive.

We've found that having some control over this is beneficial to him, and he's done well so far in attending many of the mainstream lessons.

We were fortunate in that we had a fantastic ALNCo (we're in Wales) in primary school who fought to get DS assessed for ASD quickly (we waited a year rather than the initial estimate of 26 months), and the Engagement Team were also excellent.

Outside of that though it was hellish. I spent hours phoning round different organisations just to be signposted to other organisations that signposted me. Actual practical help was pretty much non-existent - what we begged for over and over again was help with what to do when DS has a meltdown as they are violent, and we have had nothing, no help at all outside some information on NVR most of which we found we were already doing and none of which is much use if it gets to the point where you're being bitten and punched in the face because of something outside of your control.

CAMHS have been useless (I don't completely blame them I know the pressures they're under due to my job) - wouldn't do anything about a child with extreme anxiety who was constantly talking about wanting to die or killing themselves. Just getting the assessment was a fight, with the ridiculous requirement that we had to check out services DS wasn't even eligible for due to his age. Then when they turned down the initial request for an assessment they sent the wrong fucking letter and instead told us he wasn't accepted for ASD assessment (he was on the waiting list at this point), which was an awful moment - I have never seen DH so despairing and angry as when he saw that letter.

DH and I were both referred to the Primary Care Mental Health Service, where we were told in the face of daily violence from our child to try mindfulness. DH never contacted them again. I did and got six sessions of counselling, and the lovely lady I was talking to was so concerned about me during the sixth session that she got permission to provide an extra two sessions. Apart from that I was offered group CBT I couldn't get to, or if it was online it was during DS bedtime routine.

We've had a number of services involved with DS, all of them were lovely people, but ultimately got us nowhere, except to give us more to do and a lot of appointments to work around. Then everyone dropped us at the same time on the grounds of all the other people/services we had involved, so now we have nobody except the school. I should try to contact a couple of them - OT for example - but I feel permanently exhausted. I'm also going to be made redundant this year and will be involved with the wind up of the organisation I work for, and I'm worried about how DS will take that - and that's our life, everything is about considering how DS will manage with anything that happens. Even just a family meal out is all about how well DS is likely to cope in any particular venue.