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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.

HoHoHolyCow Sun 24-Feb-19 16:12:57

Have you had advice from your local SENDIASS?

It sounds really difficult. I have a 9 yr old DS with ASD. He's doing ok in mainstream school, but early years childcare was impossible. I ended up giving up career to look after him, which I still struggle with now.

Sending flowers

Babyroobs Sun 24-Feb-19 16:13:49

Do you claim DLA for him and when that is awarded you could claim carers allowance ? It wont replace a salary but would be a help. Unfortunately many parents with disabled children have to re-think their careers. is there any way both of you could go part time?

springintoaction Sun 24-Feb-19 16:13:53

Haven't been in touch with IPSEA actually, haven't managed to speak to anyone there but I'm not sure what they could tell me. I've read so much about the law and what ds is entitled to. There just isn't anything in our county that's suitable.

Sometimes I feel like we're such a burden on society. Ds is made out to be such a monster and we're such difficult parents and we should just disappear and stop being such a nuisance.

Fifthtimelucky Sun 24-Feb-19 16:14:12

What a difficult situation. I can see that boarding now would be too difficult. But would it be an option when your son gets to 11?

A friend of mine had a son in a special school at 8 where he was fine, but the school warned early on that, because of his complex needs they wouldn't be keep him him at 11 (although most pupils could stay on until 18). It took her almost 2 years to find a school that she was happy with and that was prepared to take him.

It was about 3 hours drive away, so he boarded weekly. The routine suited him very well and, although she had been very worried about it, it worked out very well.

blue25 Sun 24-Feb-19 16:15:33

But if there's no provision in your area, there's no provision. What do you expect- the LA to build your son his own school using taxpayers money?? Your son, so you need to move or educate him at home surely.

Hertsessex Sun 24-Feb-19 16:16:07

Difficult situation and doubles no easy solution. So suitable school two hours away. How about moving (renting short-term) somewhere in-between? One hour commute to school and one hour for work? Not ideal I know but maybe better than current situation.

Antonin Sun 24-Feb-19 16:16:15

Are there others like your DS?
Could a small school be set up for several children to attend taught by the home tutors. This would be more efficient and economic re teaching and provide social interaction. Main stream home schooler who lived locally could attend cultural and sport sessions etc.

BejamNostalgia Sun 24-Feb-19 16:18:29

Honestly, I think I would at least try the weekly boarding option. If you can drop him off on Monday morning you would only be missing a couple of hours of him eating, doing homework and watching a bit of TV before bed. I weekly boarded and I loved it. For a child who responds well to structure and routine it is a very good option.

Have you asked him what his feelings about boarding would be? If he’s keen and it’s really your own feelings which are the sticking point, you might have to bite the bullet.

springintoaction Sun 24-Feb-19 16:19:42

I don't think he'd cope with an online school - nor could we afford a childminder to be here all the times we were at work. I don't think it would appropriate for him to be with a new person at this stage. He would struggle with finality of it. He thinks he's going back to school and I'm only at home to sort that out.

I don't mind rethinking hours a bit and cutting down a bit but we're effectively in a situation you're in with a newborn when there is no childcare. You can't have a child at home 24/7, be in charge of their entire education and SEN therapy needs and work. It just isn't possible. But I don't want to do it. Neither of us want to be that person to ds. It has changed our relationship dynamic massively. He wants to go to school and have a peer group. It's breaking my ears to see him so isolated and lonely.

BejamNostalgia Sun 24-Feb-19 16:19:52

Plus you would still be able to give him loads of support during the week via Skype etc.

springintoaction Sun 24-Feb-19 16:20:03

My heart even - don't think I could break my ears 😂😂

Lovemusic33 Sun 24-Feb-19 16:20:31

I was in the same situation with my dd, she managed ms at primary but then after there was no school that could meat her needs (or so LEA said). I was pulling my hair out for quite a while, LEA wanted her to go to a school that sat GCSE’s but no MS could meet her needs and the local sn school did not sit GCSE’s. In the end I had to find a school myself and was surprised how many schools are out there that people don’t tell you about. I managed to find my dd a specialist ASD school in the next county where she can sit GCSE, I had to fight hard to get her a place and to secure transport to a different county/LEA but she’s now there and in year 8, she’s sitting GCSE Maths next year (2 years early) and is also in a environment suited to her (small class sizes, secure school, loads of life skill classes as well as accessing maths and English at GCSE level).

Do keep fighting, look out of county, my daughter travels quite far each day but it’s worth it.

fleshmarketclose Sun 24-Feb-19 16:21:50

Have you asked for a personal budget to source your own tutors in the meantime? Dd is also out of school, has been 15 months now, I've just lost at Tribunal and they have named a special school with her peers being up to five years younger than her with MLD and SLD and functioning academically the same level dd was aged 5 (she is sixteen and predicted top grades at GCSE) Dd will not be going to the school regardless so CAMHS have signed her off again and I will appeal the transition EHCP.
I am so sad for dd, she is lonely and isolated and well aware that she should have been sitting her gcse's and going to sixth form like her peers and instead we are in limbo yet again.

springintoaction Sun 24-Feb-19 16:22:06

Blue25 - so if this was your child, you'd just go 'oh ok then, whatever you say'?

Forums like this are where you come and rant about how crap things are. I know what the situation is and what we have to do. Doesn't mean we have to like it.

And actually - yes, the lea are legally obliged to find my son an education and if that means building somewhere, they legally have to.

Lovemusic33 Sun 24-Feb-19 16:22:23

And I do know how you feel, I struggle to work as there’s no child care out there for a child with sn’s so I’m totally stuck during school holidays, I’m a single parent with no family support and I often feel stuck in a rut when it comes to my career.

Fifthtimelucky Sun 24-Feb-19 16:23:00

Now I know you're in Devon, I'm wondering if the school 2 hours away is the same one my friend's son was in, which was in Somerset. They lived in outer London.

Lovemusic33 Sun 24-Feb-19 16:24:11

And ignore Blue what a stupid reply to the thread, LEA are leagally meant to find this child a school because leagally he should be in education. OP isn’t expecting too much for them to find her ds a school.

Debfronut Sun 24-Feb-19 16:24:17

I had this situation with my eldest son and I had to home educate in the end from 11-16 when he went college on a special course.We lived in Milton Keynes at the time. However my second DS also autistic is in a fabulous state secondary with an autistic unit now we have moved to the East Midlands and actually had the choice of two of them. He has done really well. When you have children who are different sometimes you have to make sacrifices. Its not anybody's fault its just the way it is. I do feel for you OP.

springintoaction Sun 24-Feb-19 16:25:48

Fifth time lucky - yes, Somerset. No idea if it's suitable for ds, we've just looked online.

Ds doesn't want to board at all. Despite being gifted he's a young 8 in terms of social and emotional development. He's very anxious, scared of the dark, needs us there in the evenings on the same floor. He won't even sleep at other family houses etc. Maybe for secondary but definitely not for now.

Lovemusic33 Sun 24-Feb-19 16:25:54

Firth my dd is in school in Somerset too.

springintoaction Sun 24-Feb-19 16:27:43

Some people around the UK are being taxi'd out of county at a cost of 40K a year to schools that cost 100k a year - that's quite a cost to the taxpayer Blue - bet you don't like that either.

Nat6999 Sun 24-Feb-19 16:29:58

My brother & SIL had to fight to get my nephew in a suitable secondary school. He is ASD & has ADHD, our education authority fought against him going to the school that was best for him, it's in the next town to our City, run by the Autistic Society & a place costs over £30k a year. The education authority tried every trick in the book to avoid funding this school place, including getting the tribunal deferred by not bringing their expert witness, but my brother & SIL.won & my nephew has been at the school since last September, he loves it & is coming on in leaps & bounds. He gets funded transport every day & is picked up & brought home by minibus.

StinkyCandle Sun 24-Feb-19 16:34:18

the lea are legally obliged to find my son an education
well, they have: we'll send a tutor in a few hours a week for the rest of his education.....

You just don't agree with their solution, but that's theirs. I am not saying you are wrong to find it unsuitable, but there is a solution.

Many parents with NT children had to relocate to find the right school for their children, many had to change their jobs, their career even to fit with the children requirement. It's difficult, but that's quite normal.

You have the choice to work evening/weekends whist your partner works during the day, you have the choice to relocate to be near a school that would be suitable.

There's no money for schools, budgets are getting slashed more every year. It is shit for everybody, but it's unrealistic to expect a perfect solution. We would all love to have the perfect school adapted to our children needs in our area, near our family and jobs, but most of us don't and had to make sacrifice and big changes.

SiblingDifference Sun 24-Feb-19 16:34:40

Is there any MS that will give it a go with an adequate support package/ funding?

It’s one thing to say no to a child with an EHCP worth 20 hours funding, but I’ve had packages agreed such as funding for TA support through before/ after school and all breaks. Plus therapy sessions, off site opportunities weekly such as climbing and support to adapt an area of the school. THEN it can be managed sometimes, it’s a hard fight... but could any package of care potentially fund MS? For example some lessons tutor led, alternative timetable, therapies....

runoutofnamechanges Sun 24-Feb-19 16:36:54

Are you near Torbay? If you are, I can PM you a couple of suggestions.

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