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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.

theWarOnPeace Sun 24-Feb-19 18:24:30

How much funding is attached to his EHCP? We had similar problems OP, and settled on mainstream and have essentially created a buffer zone for him within the school, using his budget. They resisted at first, but I made it so much of a headache for both the school and the LEA that they relented, and now he has a perfectly managed day at mainstream school and he loves it. The support he receives now is incredible, and he loves going in every day. He’s also extremely clever and has loads of time and support from school tailored around his special interests. I came to the conclusion that I’d rather mould (enforce the EHCP, really) the big local school to suit him, rather than put him in an inappropriate special school and have to fix all the arising issues at home.

reefedsail Sun 24-Feb-19 18:28:43

I think there's a huge gap for something like kitchen table or church hall schools (or schools within schools) set up where two adults support a small group of children (maybe with anxiety, ASD or SEN) to access online education and meet their need for routine, PHSE, activity and socialising. There are so many dc not being able to access what they need.

That sounds idyllic, but it is unlikely to be specialist enough to meet the needs of a child who can tip into a crisis because somebody (e.g.) prints off the 'wrong' colouring and whilst in crisis screams repeatedly at the adults to go fuck themselves, trashes the classroom, actively tries to kick and punch the adult who brought the offending colouring however much they try to step away etc.

The gap in the market is for a child who can do that, but then 30-40 mins later be happily settled doing maths 4 years ahead of their chronological age.

Not saying the OP's DS presents like that BTW. It's just my experience that it is children who are very able but also have behaviours which severely challenge others who are routinely being left without school placements.

mumwon Sun 24-Feb-19 18:29:20

blue25 perhaps we should go backwards & send our dc to asylums or colonies (as they called them) or not educate them at all- except - if young children ARE given correct support & can achieve their maximum they rely less on the state & many have capabilities that we as parents never foresaw - all children in this country are entitled to the education that they need that is a legal requirement. OP& other parents support their dc far more than most other parents of mainstream dc do & fight for them - why should they be made to feel that they owe the state a debt for daring to have a dc with special needs? (gets off soap box - till the next time!) OP you are doing a great job - have you approached NAS to see what organisations or advice they might be able to provide (maybe other local Autism Charities or support groups?)

Fifthtimelucky Sun 24-Feb-19 18:29:18

My friend's son's school is in Frome. She was very happy with it, but her son was older and happy to board.

I know you say that independent schools are very intolerant but you might just find one that is prepared to take him.

I have another friend whose daughter has ASD. Also high functioning but not as many complex needs as the other child I mentioned. She had been in mainstream primary, with support, but at 11 none of the local state secondaries would take her, and the nearest special school wasn't suitable so her LA paid for her to attend a small independent mainstream school.

They had to fight for it, as did the mother whose son went to the Frome school, but they won.

ineedaknittedhat Sun 24-Feb-19 18:32:23

Our ds goes to an online school. It's not that expensive and sometimes the local authorities will pay the fees if they can't provide any appropriate provision.

You need a computer set up and someone to supervise during the day, so shift work fits around this for us. I don't know what type of jobs you and your dh have though.

Our aspergers ds had to leave mainstream school due to bullying. The local authority provide nothing in terms of support or alternative educational opportunities, we're completely alone.

colourrunruinedmyhair Sun 24-Feb-19 18:33:11

Sorry for all the typos in mine I have stumpy fingers grin

Eurovision Sun 24-Feb-19 18:34:59

Could you reconsider the bases? The goal should be mainstream when the student is ready. They should be able to come up with a plan moving towards being in the classroom at some point. Just because the school said no it doesn't mean it can't be named on an EHCP. You need to state your preference and then if the LA say no then tribunal. I ran an ASD base and every student was an individual who went to mainstream classes and stayed in the base at other times. This could change daily so we had to be flexible. I'm also IPSEA trained so message me if I can be of help.

Tamalpais Sun 24-Feb-19 18:38:25

My ten year old is both autistic and very very bright - we're on our third school and fortunately this one has been fantastic with him, but he's off to secondary school next year, so it'll all be up in the air and I might need to home ed. I already spent nearly a year home educating him in between school moves - it's not easy and I found the hardest part was arranging social stuff for him, plus fitting everything in around Kid2 who is neurotypical. So you have all my sympathy, OP, and it's a bloody disgrace how the LEA is treating you. It actually sounds like offrolling, which OFSTED was making some noise about tackling (but could just be lip service...).

For all those posters who think the OP is unreasonable for wanting a school that fits her kid's needs, the entire fucking system in the UK is creaking under the strain of under-funding and constant politician lies/DFE brush-offs. The money the DFE has wasted on pouring into failed free schools and corrupt academies could have paid a thousand times over to adapt the OP's current school to help her son, or fund a 1to1 so that he could cope. The system is so bad that two SEN mums in Bristol took the council to court over massive cuts to SEN funds AND WON. So for those of you wittering on about taxpayer money, how much do you think the court case cost to defend?

OP I wish you and your son all the best, both of you definitely have a place in this world and it's NOT your son's fault that his school is being unreasonable about helping him. In bad times, I tell my son to do his best to remember what he loves in life (usually his interests plus crazy sensory fun like rope swings), and when he is feeling down, we make a plan to go do one (or more) of those joyful things. Hope this helps in some small way.

Bamchic Sun 24-Feb-19 18:39:56

Also can’t give you as detailed run down on these at the no because I’m such a slow typer (if that’s a word?) but if you want to I would suggest taking a look at:

State Primaries
Wynstream, Exeter
TCS Mill Lane, Teignmouth
Westcliff, Dawlish
Haytor View, Newton Abbot

Indipendent schools
School for inspiring talents, Newton Abbot
Acorn School, Winkleigh
On Track, Totnes
Mayfield, Torbay
Coombe Pafford, Torbay
Greater horseshoe, Newton Abbot
SANDS, Ashburton
Burton, Torquay
Bidwell brook, Totnes
Running Deer, Moretonhampstead
Barley lane, Exeter

Also, can I suggest posting on the local boards, there might be people who are in a similar situation who can advise x

IdaBlankenship Sun 24-Feb-19 18:41:53

@springintoaction Devon based here too and we are in the same boat except our DS is still in education (at the mo). Looking for secondary provision and there is no suitable setting for bright HFA with complex needs. There is either mainstream (and SENCOs differ hugely in competence) or special schools for kids with more severe LDs. We have looked at 14 settings so far...
Devon is a huge county, so even if a school is in county, it could be over and hour and a half drive away. Most of the good schools for SEN tend to be in South Devon.
DIAS were really useful when we spoke to them, if you haven't already tried them.

Missythecat Sun 24-Feb-19 18:47:13

This is me! Well minus the actual EHCP. Mainstream school say they can't cope, special (and wildly inappropriate) setting is full.

Currently I'm about to lose my job as I'm home all day with him as a single parent with no support.

So frustrating. It's tiring to just have to battle for an education for your child and it just smacks of discrimination

[Flowers] for you OP and all in similar circumstances

MilfordFound Sun 24-Feb-19 18:51:53

I worked at NHH 10 years ago, is that the school you mean in somerset?
It's probably too long ago for my experience to be relevant as lots could have changed. If I had a child with asd who needed a boarding school I'd be happy to send them there.

givemesteel Sun 24-Feb-19 19:26:21

I sympathise OP as my parents basically had to relocate when we were kids as there were no suitable options for my autistic (plus numerous other complex needs) sibling's schooling, at around the same age.

Appreciate you've got your support network on Devon but in terms of the rest of his life there may be better provision (in terms of housing / support etc) in a more densely populated area.

Would moving an hour closer to the sommerset school be an option, so you were an hour away from the school and an hour away from family support? Appreciate not ideal but in that scenario could you rent your home out and then rent somewhere closer to the school? Then not a permanent move in case he may be able to board when older.

Anyway, mostly just to say I'm sorry you're in this situation flowers

Cider4Caro Sun 24-Feb-19 19:28:29

No advice but I feel your pain. My youngest DS is 5, and has ASD,SPD and possibly ADHD plus non verbal and other medical issues. Every day is a fight when you have a SN child. It's depressing that it is impossible to get the right help for our kids. It shouldn't be like this, we should be supported and not made to fight for every morsel, to have to make noise to get answers.
I want to say I don't think your on your own, I think a lot of kids who don't fit in a box just get shoved to the side. No-one has answers, and no-one takes responsibility.
I have experienced people who work for the NHS and Local Council who have really fought to get my son the right help, and also some who have been abysmal, who have caused so much damage and delay by refusing to let us apply to get my son the help he desperatley needed from Speech Therapy and 1-1 supervision, which we later got from another person doing the same job. It's like it was her money she didn't want to spend, like she knew she was in control and she took great pleasure in refusing to help.
I would advise you to keep fighting, if your not happy with the answers your getting, go higher up, or ask to speak to someone else. There are people who work for these services who go above and beyond to help under very difficult circumstances, It can't be easy doing these sort of jobs. If you are struggling with the LA, take it further. Ours has just had a terrible Ofsted report too, but only good things can come from this as things will have to improve and changes will be made. Take advantage of this if you can and good luck!

category12 Sun 24-Feb-19 19:31:15

Could he go part-time to the school 2hrs away?

Could you move halfway, stay in your jobs but commute and he have an hour's commute?

SquareTriangle Sun 24-Feb-19 20:48:18

I really feel for you, OP.

We are verging on this exact same scenario. If the last school say no, there are quite literally no schools in the county that can meet my child's complex needs.

My child is currently out of school due to lack of suitable provision. But does receive a few hours council-provided tuition each week.

Obviously that's better than nothing, but we shouldn't have to be fucking grateful for the few crumbs that are scattered our way in terms of educational provision.

Like your son, there is tonnes of stuff in my child's EHCP that she is not getting. Stuff that she is legally entitled to.

QoFE Sun 24-Feb-19 21:11:37

Watching with interest as this is basically the exact position I'm in.

8 yr old with full time 1-1 specified in EHCP. Daily violent meltdowns in mainstream, being taught in a fucking corridor for the last 10 months. No suitable provision for 50 miles. Makes me seethe.

tor8181 Sun 24-Feb-19 22:13:02

this is our situation and no one professional seems to care,as soon as i deregestered them they washed their hands

both boys have multiple disabilities each and are to severe for mainstream and no special schools around our area(valleys of south wales)nearest was far end of bristol which was a good few hours away and technically a different country

i was told by the la 3 years ago i have to keep them at home to home educate as there is no where that can accommodate their needs

we do love the home ed life though and are very involved in the community as we do 2 group as week and day trips with them

there are many many in this situation and the government just dont care

SquareTriangle Sun 24-Feb-19 22:17:01

According to the Department for Education’s own figures, more than 2,000 children in England with special educational needs and disabilities (SEND) are awaiting provision for their education.

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.

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.

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.

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.

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.

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.

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