To ask what you are supposed to do

[drspouse]

DS has an EHCP.
It's not very good and we have a tribunal coming up.
He has some challenging behaviour. We admit this and we are doing our best.
He moved school in Sept after we looked at 8 new schools, including 4 special schools.
The new school has just permanently excluded him. They have not tried all the suggestions of EP, OT etc and we know this is illegal but it doesn't help with the fact that he now has no school.
They are suggesting he goes to the PRU. I'm sure it's very nice but he has only just started to settle at the new school.
He's 8, in year 3, and loves to play with his teddies. We were told some of the older children at the SEMH schools we looked at had pulled knives on teachers. If there's any child like that at the PRU it will break him.
We both work, I've just been told I can't reduce my hours any further and DH has just started a secondment which will be for a year. The PRU has no after school club. We both have meetings at any/every hour of the working day. Giving up either of our jobs is not an option.
So we can't HE (and we don't want to, and we shouldn't have to, and it would be awful for DS).
What are parents of a child with SEN actually supposed to do? Is the idea that we are both supposed to sit at home with our child and keep him away from other children/schools/the public? Are we not supposed to work? Is the country going to pay us our (fairly high, which is partly why we aren't giving up work) salary for not working?
Note before you suggest it: yes we know we can look at out of area schools. We did, they are included in the ones above. We live quite rurally. We can't move (I have tried to move jobs for years). But we need school for DS NOW. Not in 6 months time after we've moved/fought for a private school place (there are none suitable anyway)/I've lost my job.

I'm sorry, I think that's the only Bingo phrase missing

She also could maybe do with a spa day to cope with all the stress 😁

I was just thinking that. Anyone want to pay for me and babysit?

When I first retired, I did consider hiring myself out as a short term SEN supernanny. I do think there's a gap in the market for experienced autism and behavioural specialist nannies/sitters.

@Mrshue, if your child at the school 15 miles away is at the nearest suitable school, why wouldn't you take up his right to home to school transport?

Some children wouldn't cope with school transport.
I could fight for my child to receive transport to school as we had to move her due to her disability, but I know that travelling with me is her best option.

@drspouse
I am not sure people with NT children understand the difficulties parents of SEN kids face on a daily and ongoing basis. Everything is a battle and it wears you down.
There simply is not enough provision for kids that aren't 'disabled' enough for a special school but cannot cope with the demands of mainstream.
I feel for you
My son is ASD and he is often referred to as having mild autism when in fact this is how others see him because he is articulate and looks normal. I hate this term because for DS it is a condition that affects every aspect of his life, the constant anxiety and coping with stuff that most take in their stride.
I have seen you posting on SEN board but feel glad that you have raised the issue here because I feel exactly the same as you

Some children wouldn't cope with school transport.

I've actually just seen a post on a local parents FB group saying that someone's child has been "banned" from the minibus to the PRU. I suspect (knowing our LEA) that the minibus has no or one not very experienced accompanier for 6-8 children who have behavioural problems (hence why they are in the PRU) and then not surprisingly the children don't behave well on the minibus.

It's all very well taking 6 children who have learning disabilities but no real behavioural problems, or severe motor difficulties, to a specialist school on a minibus, but not children who will be aggressive if triggered.

OP I want to apologise for judging you earlier. As I said earlier we are at the beginning of our journey with GS and already it's so hard. I hope you get a resolution soon. I've seen friends battle and battle with the school system for their children. Shouldnt be this way 😪

OP I think it was disingenuous of you to post this in AIBU 'because all of us should know and be angry at the state of SEN education' without mentioning until another poster asked pages and pages in, that your DS is adopted. As an adopter you have access to sources of support that most parents of DC with additional needs can't access. You can get the head of the virtual school for LAC in your area fighting your corner. You can suggest school use some of his enhanced Pupil Premium to pay for LSA time, or his private therapy for that matter. You could access the adoption support fund to pay for the private assessments, therapy etc that you have to work to pay for. You could request an assessment for an adoption allowance to cover the cost of leaving or changing work or taking a sabbatical. You could even go nuclear and say things like 'placement at risk of disruption' to get SS hopping. You are in a better position with more recourse to help than most parents of DC with SEN, yet you are responding here like you are the only parent having to live this shit.

I am a single adopter of 2, both mine are in mainstream primary and both have additional needs. So I do get how shit it can be. But I also get that being adopted means my DC get enhanced Pupil Premium, which can cover some of the things they need to cope in ms school. For context, the £ of my 2's PP is double the school's entire English budget for a year. We are more fortunate than most families with SEN DC to be able to access this.

We are also fortunate that I get an adoption allowance, and higher rate DLA for one DC, meaning I can work 0.5 fte. I need that for my own sanity, and my DC need it too. For context, AA plus DLA plus tax credits equals double what I bring home working 0.5 at the top of NHS band 7, so not a small amount. We are also fortunate to be able to access expensive specialist private therapy, via the adoption support fund.

Now I know that in some ways this is all like saying 'yep you're on the Titanic but at least you've got a really good suite', but you seem determined to think you are the most hard done by parent of a child with additional needs which aren't being met, when you've got more options than most. Also, unlike birth parents of DC with SEN, you've done prep and home study where you will have been told the likelihood of your DC needing extra support is high, and asked to demonstrate how you would deal with that, both emotionally and practically. Did you think it wouldn't happen to you, or just assume the system would have to sort it? Because forewarned is forearmed, and you would have been forewarned.

I get the frustration that there is no school which can meet your DS's needs, I really do. I get you don't want to HE, and shouldn't have to (I couldn't do it, a year of adoption leave had a massive impact on my mental health and if I tried to HE either of my DC at least one of us would end up dead or insane). I get the unfairness that other people get to go through life with kids who can cope with normal stuff and don't know what its like to have to battle for non existent suitable help for your DC. But it might help you and your DC to see and use all the extra resources you can access, which most parents of DC with additional needs can't.

@nothingcanhurtmewithmyeyesshut I see you are a very lucky adopter.

The Virtual School Head said "have you asked the specialist teacher for help? Oh I see you have. Have you got an EHCP? Oh I see you have. OKbye". Not so much fighting for your corner as completely ineffectual signposting. They gave us nothing more than a 5 minute Google search would have done (and way less than even the rather ineffectual SENCO did).

We wouldn't get an adoption allowance (and even if we did, it wouldn't touch the sides of private assessments, solicitor etc.). We asked for assessment for DS through the ASF and after a YEAR they couldn't find anyone who could do what he needed so we went private. 6 months later another psychologist had done one assessment which was hardly more than the LEA EP had done.

We get middle rate DLA which birth parents can get.

As a PP has said, if you are not an adopter you also don't understand the additional needs that an adoptive parent has.

Oh and wingingit thank you.
It is hard.
Your DGS is entitled to full time education, but your DD is lucky to have you around to help with care - we don't have any family who can or will help.

I think that’s really unfair @nothingcomestonothing yes there are some additional resources available to parents who have adopted but it’s still a very hard bloody road and folk often utterly underestimate the impact of adoption on children and their parents on an ongoing basis. Many of the resources you list simply aren’t that easily available - it’s still a fight to get services to engage.

You’ve found a way through it and have some additional resources - I’m delighted for you. I have a fantastically supportive school for my kids, I’m so glad of that but cover and support aren’t universal by any means and I expect to need to fight for my kids at some point. I’m not sure what’s got under your skin but the OP has every right to be unhappy with her child’s situation.

I want to wish you luck. I didn't get back to work for years after having my children because of DS1's SN needs and all the various issues that have popped up over the years (including exclusion). I did finally get back to work, but only part-time in min wage job as I am still very limited with what hours I can do. I'm not writing off my future, but DS1's special needs has dictated my life and it's very unlikely I'll have any meaningful career now.

It is what it is, but I hope you can find a way to make things work for all of you, that doesn't mean you have to give up your job.

I'm about to go part time and essentially give up on a career I love because of dd's SEND.

What's available is so dependent on area. My dd needs an OT sensory assessment, this was recommended on her diagnosis report. However my local authority/NHS Trust no longer provide this. So our only choice is to go private. Except we can't afford that at the moment because I'm having to go part time.

And my NT ds already misses out on so much and now he will have to stop swimming lessons and football, and not even a camping holiday. And if one more person tells me it doesn't matter, all that matters is loving parents I will punch them.

I get your anger OP, it's totally shit.

@jellycatspyjamas I think what got under my skin is the way the OP has been really dismissive of any posts which say something other than 'yep it's shit, the system has let you down, you shouldn't have to do anything you wouldn't choose to do to just because your child has additional needs'. She absolutely is entitled to be pissed off at how crap the situation is, of course she is, but it's not ok to be as rude and dismissive as the OP has been when she is in the relatively favourable position of both having been prepared in advance that struggles like these were likely to happen when she had her DC (by prep, home study, matching, CPR), and by being able to seek support others can't. I know it's all a leap in the dark, but at least we know we're leaping.

I know it's not a race to the bottom, and I know the services on offer are usually a tiny drop in the ocean of what's needed and are only offered at all once you've crawled over broken glass in front of at least 3 SWs who suggest you go on a parenting course. I wouldn't ever suggest that getting any useful help as an adopter is easy, please don't think I've found it easy, but I do think it's more possible than it is for some parents of DC with SEN.

OP I'm sorry if I gave the impression that accessing the right support is a piece of cake, I truly know that attempting to do so would cause the average person to explode with frustration. I have had to be more tenacious, stubborn, rude, demanding and sweary than I'd have ever believed possible (telling the LAC SW that the only way she could be of help to me would be by fucking off is still a fond memory). I get the feeling that the qualities needed might play to your strengths? . I truly hope you and your DC get what you need.

Hope I'm not speaking out of turn, but I think OPs child was not a UK adoption. I don't know if that means the same support is available.

@ClownsandCowboys- do you claim DLA or PIP for your daughter, and does she have a social worker?

If not- try to put both things in place, because they will give you access to direct payments, which will help pay for respite/carers so that your DS doesn’t miss out completely.

It was a lifesaver for us.

@drspouse- our DD is adopted. After a traumatic four years in mainstream, we applied to a special school. It was the best thing we ever did for her. There were three times the amount of support staff, and teachers, TAs and a head who knew all about attachment disorder.

I realised that keeping her in mainstream had been cruel, as they couldn’t possibly have given her the emotional support she needed. All our lives changed for the better after she moved.

@JemimaPuddleCat yes he is, we get most of what English families do but not all. We might as well not get the Virtual Head for all the use they have been.

@shockers we don't get direct payments despite getting DLA. You read the bit where I said there's no suitable specialist school?

@drspouse- I read the bit where you said there was no suitable specialist school. I also read the parts where you said that his present school should be able to cope with his behaviour. The LA can fund privately run specialist schools in extreme cases. The PRU will be able to help with accessing funding, if that’s what it comes to.

Can I just point out that you, and your son, will benefit enormously from trying to work with whatever school he attends. Schools have a duty of care to ALL pupils, not just yours- and you have no idea what other students have been, and still are, going through in their own lives.

Did I say we haven't been trying to work with the school?
Did you read the bit where I said we'd suggested a part time timetable?
Did you read the bit where I said there was NO SUITABLE SPECIALIST SCHOOL? Clearly not since you've just suggested we look for one.

Can I just double check, DrSpouse, is it you and your DH who think the specialist schools are unsuitable, or the LA?

I read it all. It is also something I have experience of both in my personal life, and as part of my job. What I said to you is that there will be private specialist schools which you haven’t been invited to look around because they are extremely expensive. In extreme cases, your LA will fund a place, but that usually comes after the PRU, and associated experts have assessed your child’s needs. There are these schools in every part of the country, but they are not widely known of, and are certainly not offered routinely to parents.

Both. The specialist teacher (who knows DS well) asked if we'd be prepared to consider specialist school and we said "where did you have in mind" and answer came there none.