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To think the LEA should pay our bloody salary then....

(144 Posts)
springintoaction Sun 24-Feb-19 15:21:32

Well, not really. But we're so frustrated and upset at our current situation I don't know what to do.

To cut a very long story short, ds8 has had a fairly recent diagnosis of autism and is also gifted. He is behind in social and emotional development mainly and has severe anxiety that makes him explosive in the wrong environment. He's had a really difficult time at school for 18 months and hasn't been full time for a year and now hasn't gone for nearly 4 months as they kept excluding him and his mental health was worsening. He now has an EHCP and needs a new setting.

Small mainstreams all say his autistic needs are too much. Autism school says he's too bright. Provision is poor here. Independent schools are very intolerant and independent specialist schools are all focused on forest school/EBD type provisions which doesn't work for him (we've tried as intervention support). He needs the structure and learning of 'school' but in a quieter, more nurturing environment. The nearest place is over 2 hrs away. He couldn't travel 4hrs a day nor could he board - it would break him and us to rip the family apart - we're what keeps him safe and secure.

LEA have said there don't think there is a school for him. Very'll have to keep him at home and we'll send a tutor in a few hours a week for the rest of his education.....

Apart from everything else (ds wants to go to school, he has no friends at home, we don't want to be responsible for his whole education for the next 10 years and all his therapy requirements - it's terrifying and he's hard work) we need to work ourselves. I've taken a 6 month career break as things were so bad for him thinking we'd get him in to a school by then but I had no idea there wouldn't be one for him. I need to go back to work. We've spent every penny of our savings and we are getting in debt with this 6 month break. Our mortgage is fairly big. We can't afford to move house now and actually, why should we have to? Children without disabilities get to own homes and go to work. I love my career. I can't stay at home for 10 years dealing with everything. I'm absolutely terrified and trapped in an impossible situation and have no idea what to do.

springintoaction Mon 25-Feb-19 21:07:24

Sunshne2019 - I've sent you a pm (hopefully!)

Unicornfeathers Mon 25-Feb-19 12:42:50


I’m nearly In this position but I’m in a landlocked county (so theoretically more options) and there is no way I would trust ANY LA enough to move counties without having the school placement in place first (it is possible to do this but it means securing the placement as an out of county then moving and HOPING the receiving LA agrees to the same placement). Even then I don’t think pp really understand the risks associated with moving counties.

My DS is 14 (yr 10) and special provision has failed - I came on to say you have SO much time to play with and also your DS doesn’t sound disaffected so there is hope. Sunshine sounds like a really good person to connect with to find a way forward at this stage too.

The whole system is a bloody disgrace and it’s disgusting how SEN children with average to above average IQ are treated.

Oh and I’m experiencing this in the East Midlands so pp saying to move here are way off the mark. Schools are are full with waiting lists and aren’t even letting parents visit them because they have to draw a line somewhere. I have looked at everything that might be suitable in a 2 hour radius and although there is some provision only ONE is letting me see them and they are not keen on having him.

Good Luck and keep battling - you sound like an amazing parent

springintoaction Mon 25-Feb-19 12:03:59

Sunshne2019 - thank you so much for replying. I would love to chat more over pm as I haven't found anyone in our situation and yours is almost identical. When I get chance I'll fire up the laptop and see if I can work out how to message!

grasspigeons Mon 25-Feb-19 11:57:30

we are too exhausted to riot!

LakieLady Mon 25-Feb-19 11:33:34

Every other child without SEN will be given a place at a local school whether it's the one of your choosing or not, there will be one available. For SEN and with an EHCP you don't have that luxury. Everywhere can say no on the basis of your SEN and you are left with nothing. That is disability discrimination.

I totally agree with this. I don't understand how LEAs get away with failing so many children with additional needs, or why parents aren't rioting in the streets, tbh.

Sunshne2019 Mon 25-Feb-19 11:02:24

I have been transported back reading your post OP, your situation is so similar to ours. I have named changed to share my story incase it helps you going forward.

At the end of year 2, the wheels well and truly came off. What we would not know for almost a year from that point was that he had masked his undiagnosed ASD from everyone and almost equally shocking was an IQ of 160. But by then the ‘he is just a naughty child’ strategies of isolation and exclusion by school had compounded his anxiety and his inability to deal with teasing and peer rejection meant that he could no longer cope in a mainstream class. I was unable to work for most of his year 3 whilst all the assessments, exclusions, part time timetable, EHCP development etc was undertaken. I eventually had to resign my post.

I used the time to look at alternative schools, including independent, independent specialist and mainstream/ LA special schools and realised that there was nothing within a 90 mile radius that could or would be willing to, meet his needs. Moving was, and still is, not an option both financially and personally and boarding at 7/8 was simply out of the question. Trying to home educate him myself, whilst still on roll on a part time timetable quickly made me realise this was not a long term solution, as even though I am an experienced teacher myself, I was his mum not his teacher. Bringing in a tutor was also ruled out as he wanted to be ‘part of a school community’ as, regardless of his ASD, he remains a socially driven child. An Ed Psy, experienced in gifted education, explained that he needed to learn in a group situation and to bounce off ideas and thoughts with similar children or adults.

Once it became clear that the LA was only going to offer us the default of EOTAS (and well done for not letting him be removed from the school roll), We chose to fight for online school funding and a personal budget to cover the cost of things that he should have received at school (eg swimming /various sports lessons) and EHCP requirements such as social communication support (we use this to fund buying the Michelle Garcia social thinking system which was recommended to us given his profile) and costs to attend things run by a local ASD charity such as a weekly social group and lego therapy, etc.

Fast forward to now, and at almost 10 he is still at home, however, he is very much a part of his online live school community. He does live lessons each morning, he is in a class group two years ahead for most subjects. He has ‘online class friends’ and in the afternoon/evenings he is able to join in some local activities. He recently joined a local chess club with his dad and really enjoys playing with the older children and adults.

I went back to work (teaching) two days a week in November on a long term supply contract. He goes to his grandfathers (with his laptop) for one day and one day I use his personal budget/DLA to fund an ASD experienced TA to support/redirect him during his morning on line lessons and then in the afternoon she does some thrive/social communication work with him. Working has given me back my emotional stability and enables me to support him the other days. Yes we have less money, a very old car and no fancy holidays any more, but with his personal budget, DLA and me working a couple of days a week, we have been able to stay in our home and close to our family support network.

What supporting him in his online lessons made us quickly realise was how our boy who could articulate exceptional well with adults, was not able to communicate effectively directly with his peers. It really helped us to focus his support on his social communication needs that neither we or the Salt during his EHCP assessment, had not picked up on. No wonder he struggled at school and communicated his distress in action and not words.

We will shortly start the process of fighting for an independent specialist placement at secondary level. Mainstream secondary will not be an option where we live. We know there are only two or three suitable in the U.K. that can meet both his ASD and educational needs and that this will mean boarding. However, that will also brings social benefits for him that will help him longer term. What I do know is that being at home full time for these past 20 months reduced his anxiety significantly and gave us the opportunity to do a lot of social communication skills learning and self regulation development with him. He is no longer the sad, anxious, angry child he once was.

If you feel that only a physical school is appropriate and you cannot travel to the Independent specialist school in the next county, then you will need to fight the LA for full time (including breaks, etc) targeted 1:1 support, not just a banding amount. Expand your mainstream search to include larger schools that may be better equipped than most smaller schools and I would play down his academic needs, as that will probably scare most schools, almost as much as his ASD and to be honest his social and communication needs are probably more important at his age. But you will need to understand that the social and emotional needs are likely to increase and most MS are ill equipped to deal with this. Alternatively if you feel it is the most appropriate place, go back to the ASD school that rejected him and ask them what additional and specific support would be needed to be put into place for him to attend. If this is a LA maintained ASD school, then fight the LA for that additional resource.

MumUnderTheMoon Mon 25-Feb-19 09:38:52

None of your choices are great so you have to make the best one you can. From your posts the choices seem to be: a forest school, an intolerant independent school, home education or boarding at a school which meets his needs. If those where my choices I'd go for boarding school you could drop him off on Monday morning first thing and pick him up at the end of school on a Friday. Most autistic people thrive on routine and that would be offered in abundance at school and if it's awful then at least you've tried.

JuniperGins Mon 25-Feb-19 09:25:52

I have a child with HFA. I was a senco and sat for years on our local SEN panel allocating places.

Not helpful I know but with the knowledge I had we reorganised our lives to EHE. The system is shit and I’ve watched so many waste a while education fighting and getting nowhere effective

SquareTriangle Mon 25-Feb-19 09:13:25

I agree that everyone involved (schools, local councils etc) need to think more creatively.

SquareTriangle Mon 25-Feb-19 09:05:27

Why can’t they send the tutors to the school for autistic children. He can get the care and therapy he needs and then part of his day can be reserved for independent study and working with tutors so he keeps up on academics.

I think that this is an excellent idea too.

However, I imagine the LEA would argue against it on grounds of cost.

In our situation, my child's 5 hours per week of 1:1 tuition counts as "full time" and therefore no other provision can be undertaken.

Special schools, especially independent special schools, cost ££££.

Also, in our experience, special schools (again, esp independent ones) are run in a very particular way. If you have a child who fits in at a special school (in terms of needs and the provision required to meet those needs), then great, but if your child's needs differ, then it's a case of looking elsewhere.

BlueSkiesLies Mon 25-Feb-19 08:40:19

Why can’t they send the tutors to the school for autistic children. He can get the care and therapy he needs and then part of his day can be reserved for independent study and working with tutors so he keeps up on academics.

Now THAT is a good idea.

Skittlesss Mon 25-Feb-19 08:11:47

Can he go to the school 2 hours away, but perhaps shorter school days so his days aren’t going to be over 10 hours long? Maybe 4 hours a day school? You say he did have wraparound care and after school clubs, so I assume he is already used to quite long days.

Phineyj Mon 25-Feb-19 07:47:09

OP I am sorry you are feeling so sad. Can you ask the GP for some support for you? Put your own oxygen mask on first etc. There will be a way through but you are going to have to be strong and determined. Can you repost this in SEN?

whatsagoodusername Mon 25-Feb-19 07:40:05

We might be you in a couple of years DS is HFA but is having a lot of trouble coping with mainstream in his very sympathetic small independent (which doesn't actually have much experience with SEN). We're still at the stage of trying to get an EHCP.

I went to a workshop run by Cerebra a few weeks ago, "Accessing Public Services Toolkit Workshop", which I found pretty helpful and informative. It was a lot of what to do when they say no information. They've got a number of them scheduled, might be something close enough to you?

Good luck with it all.

IntentsAndPorpoises Mon 25-Feb-19 06:41:39

@springintoaction if you touch the three dots in the bottom right corner of @Fuckcalmrhageon post one of the options is to PM. That's on the mobile site.

springintoaction Mon 25-Feb-19 06:40:20

I don't know what I envisage really. I think I thought people would try a bit harder to get solutions. It would be nice if we went to a school and they said 'maybe we could make this work if we did x, y and z. Your son has a lot to give, that's try' rather than 'no'. Everywhere we try looks as us like we're mad, he's a monster and slams the door in our face. The LEA don't care and won't help yet they're breaking the law.

I hate the mentality we're supposed to be grateful that we could give our jobs up, leave our home and our family, get into more debt, live somewhere we don't want to so he could go to school, something every other child gets to do easily, because we dared to have a SN child with the wrong type of SN. It's our fault therefore our problem. It makes me very sad for his future and wonder if we should just load the car up and drive off a cliff so we're not a burden to society anymore. That's what it makes me feel like.

springintoaction Mon 25-Feb-19 06:32:33

Fuckcalmrhageon I don't know how to message on here but if you do, could you PM me the name of the schools your son attends and the one opening? Worth a look - thanks.

FuckCalmRhageOn Mon 25-Feb-19 02:06:50

So sad to see another family struggling. For what it's worth the structure and routine of boarding is amazing. I thought we'd hate it but it's been the best thing for my son and he's on his 3rd year now. We are Somerset based and as much as I doubted the school he is thriving and has the opportunity to sit GCSEs in the subjects he's very able in (maths mainly) and other exams for less able subjects. Don't rule it out before trying. We are local to our school and my soon chooses to board with friends he has finally made, staff he loves like family and a routine he does so well with.
The provision for boys is easier to access here we have found. There is a new school opening in September which isn't boarding but is a mixed sex SEN school. My sons is all boys. If the commute is doable then research Somerset. We have kids at my sons school who live quite far out and travel in daily and or board. Keep fighting. You are his voice. Don't let red tape silence you or break you down.

Purpleartichoke Mon 25-Feb-19 00:41:20

Why can’t they send the tutors to the school for autistic children. He can get the care and therapy he needs and then part of his day can be reserved for independent study and working with tutors so he keeps up on academics.

categed Mon 25-Feb-19 00:28:26

Not that our school is perfect or getting even half of it right. But at least we are trying and we do try to accommodate all children.

categed Mon 25-Feb-19 00:13:02

Op, huge hugs and i hope you manage to find an appropriate placement soon.

This situation is awful! Why do we as a country feel it is ok to fail our children? Get it right early and we can support our kids to be able to access ms school when appropriate.

I am feeling lucky. I teach in a department attached to a ms primary. We can accommodate all kids from 5-12. We can do small group, supported ms or unsupported ms for appropriate lessons and time periods. The only time we have been unable to support pupils is when aggresive behaviour put other students/staff lives at risk, and that has only ever happened once. We are all trained primary teachers so teach the curriculum up to age 14. It's not perfect, funding cuts make it more dangerous for everyone and impact on access to ms, but it sounds better than what many of you have available.

It makes me so sad that we are doing this to our children because we lack understanding of their needs and councils are unwilling to provide funds to allow it to happen.

AspergersMum Sun 24-Feb-19 23:47:19

I can't imagine some posters here giving advice in real life to a dad with an autistic child. "Could you maybe give up work? Sell your house and relocate to xxxx where there is a school your child might be accepted at? Worth a shot. Maybe you and a few other dads could set up a group in a church hall and teach your kids there...." yeah the kids that need 1 to 1, sounds ideal LOL and is I'm sure what every parent dishing out advice would do if there was no school space for their DC. There are no real breaks with Home Ed. It is relentless. I love my DC dearly but it is so hard to do this 24/7 for years on end.

AspergersMum Sun 24-Feb-19 23:40:17

We're in the same boat. "Elective" Home Education is by far mainly kids with Autism in our area. A friend did manage to get funded to HE but it took a year of hard work - but if you've already had your council say that there is no appropriate space, that is half the battle. It isn't ideal but getting a decent amount to pay for tutoring, respite childcare, and groups is better than Home Edding for nothing, and along with DLA and Carer's Allowance, helps make up for a missing salary a bit.

CheshireChat Sun 24-Feb-19 23:28:18

Not asking this in an arsey way at all, but what solution do you envision? As you could perhaps push for that specifically.

I do understand why you dread the idea of HM as I'd be the same and my kid is NT so less challenging.

springintoaction Sun 24-Feb-19 22:22:31

I'm so sorry that so many others are going through similar. It's an utter disgrace.

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