To want my child to be able to go to school all day every day and to be in bits because it's probably never going to happen and I'm utterly beyond exhausted and fed up with it all?

[HerstoryRepeatsItself]

DS is 9 and autistic. He's been at two mainstream schools both of which failed him terribly and has now started at a small specialist school. He's only doing 3 afternoons (1.30-3.30pm) a week and there is no indication that this will change any time soon. This school is literally the only school within 50 miles and 3 local authority areas that was a) suitable for an extremely bright and academically able child but who has violent and challenging behaviour and who can't cope in a mainstream school and b) actually had a place for him.

It's been 2 years since he was at school full time and I'm just at fucking breaking point. He's lovely and very chatty and bright but I just need a break. I work from home, which I don't want to give up, so on the 2 days he is home all day I have to work while he plays and watched TV on his own etc. The 3 days he is at school, we try and do stuff in the mornings and then it's a 30 minute drive so I just have to sit and wait in the car while he's there as there's no point coming home again. Sometimes I whizz to Tesco to get shopping in etc but he is not there long enough for me to get to a decent sized town and back so mostly I just sit and dick around on MN while I wait for him.

We live somewhere rural and poor, so there just aren't lots of things to do. The library is hardly open, there isn't a museum for 25 miles, local home ed groups are mostly for younger children and full of mums who are somewhat sniffy about the fact I would rather DS was in school! And lots of their meets are in the afternoons anyway, when I'm ferrying DS to his 2 hours of education.

His world is so small and boring and I'm devastated for him. His dad isn't around (long story) so I'm all he has, my family are useless and I'm low contact with them. He's so so so clever and desperate to learn and make friends and there is just nothing for him. I'd move to somewhere with more options, but I have 2 older DC in crucial years of secondary education so that's not realistic for another 3 years or so.

I feel terrible even saying this but I'm so fed up of him being at home so much. I adore him but I am worn out, I have no patience for yet another fucking role play board game, I just want the mental break that dropping him at school at 9am and knowing that was me free until 3pm would give me.

There is literally no service to help me btw so whilst I'm open to suggestions, I don't think there is anything to be done. He sleeps at night so I don't get respite or a disability social worker etc! As apparently that's all the break I need. It just makes me so fucking angry that DS isn't getting what he is legally entitled to and that basically, nobody gives a shit

I'm not an expert in this field but I do know as from my days as a SW that families who pushed hardest got most.
There were few resources even then and it is much worse now so shouting loudly does help get a share of the ever dwindling pot.
The more you make it the LA's problem the more likely they are to do something.

Yes I've looked at independents as well - this school is an independent and it was the only one within an hour's drive that was even approaching suitable. It was still a battle to get it funded though, the LA tried to insist that the previous school was fine (he was there for 18 months and in that time managed about 10 whole days in school, was excluded over a dozen times, and spent 4 months on a one hour a day timetable reading in an isolation room that didn't even have a window with no teacher input). I looked and looked but there was literally nothing. There is a school for SEMH nearby that could have taken him but it takes from age 9-18 so he would have been the very youngest, most of the pupils there have severe mental health and behavioural problems which he doesn't - his challenging behaviour is all caused by sensory issues and high anxiety, in a calm low demand environment he is an absolute chilled out delight but that school was not a calm low demand environment by any means! Plus it didn't offer a decent range of GCSEs etc which matters to me as DS is very academically able. Other than that we were looking at a 50 mile drive to anywhere else. And residential would not be suitable for him at this stage, he is still very young for his age in a lot of ways and wouldn't be ok being away from me. Maybe when he is older, but not yet.

Quite honestly I wouldn't even know where to start, enforcing it. The unlawfulness just comes at you from every possible direction. Feels like whack-a-mole sometimes. And you only have so much bandwidth available. It's all a mess.

@SENcrisis this is exactly how it feels. I think I've won a battle only for it to pop up elsewhere with some new bullshit. I even had to fight for the mileage to this school to be paid because they tried to claim that there was a suitable school closer to home (ie the mainstream that kept him in a windowless room for an hour a day).

He is entitled to a full time education - it sound so stressful for you - have a look at ACE education for support and advice on challenging them x

If there’s nowhere suitable, what about EOTAS? I’m no expert here but it sounds as though you’ve exhausted all your options beyond moving house, which I understand you not wanting to do because of your other children. The truth is sadly that your other children could be taught anywhere but your son can’t - it’s such a difficult situation to be in and I’m sorry it’s so shit. We are lucky where we are that there are a few good specialist schools but for so many that’s not the case.

I suggest you contact all the support organisations mentioned before. If the school cannot/will not take him - then you can require the LA to provide Tutors.

This is unlawful exclusion. Legally, he is entitled to 25 hours schooling per week. I strongly suggest you contact the LEA. Give them a deadline, in writing, by which you expect your child to be in full time education or you will a. inform the press and b. initiate legal proceedings. Your MP may also be a helpful ally.

Thing is, I know it's not lawful. I just don't know wtf else can be done. This school, whilst very good, cannot handle challenging behaviour. They make that clear from the outset. Their specialism is children with school related anxiety - which DS has, but his manifests in a very different way to most of the children there. They are trying to ease him in very very gently so as to keep it positive and prevent a re-emergence of the extreme behaviour that was going on at his last school, and they are clear that it will take time and that if this approach doesn't work for us we need to look elsewhere. I appreciate that what they are suggesting is exactly what DS needs, which is why I'm facilitating it. I do think that eventually this school will be the very best place for him. But in the meantime, nobody seems to give a fuck about the impact on me ...

But what else to do? Moving is honestly not an option. I cannot move. In 2.5 years, it will be a possible, but right now it really isn't. There is no other school in an acceptable distance. There really isn't. I know this because I've spent days looking. EOTAS would finish me off tbh. The hope that he will be back at school one day is all that keeps me going.

So really I just wanted to whine but I do appreciate all the kind words and suggestions. I'm going back to fight the transport issue and may try again to get a social care assessment to see if I can get any respite. Unlikely, as DS is technically "High functioning" so his needs aren't deemed great enough, but that was based on him being in school so maybe now he isn't in school they will reconsider.

@HerstoryRepeatsItself bless you. Come back and winge whenever.

I feel for you and definitely think you need to push for a social care assessment, you need a break and they have a duty of care to you as his family too. We had a similar situation with my SS who has significant learning difficulties and ASD with challenging behaviour. Although he was full time schooled he was difficult to manage during holidays and weekends. Until we said we can’t do it anymore and refused to do so then we were listened to. We basically said we weren’t going to pick him up on the last day of term without a respite plan in place for the summer holidays and then a meeting was called and support put in place. Keep fighting, you shouldn’t have to but it is the only way

My is autistic and he would go bananas with the lack of stuff to do, it sounds like a very tough place to live. If you work from home can you not move?

Secondly, this two hours... can’t you take laptop and work?

OP I get it, it's really bloody tough. My DH is around but not in the picture in relation to my son's diagnosis and care - he also has the same diagnosis and unfortunately means he cannot be involved because it was making things so much harder for me.

Anyway, my first suggestion would have been to move but I understand your point about your older DC and I agree uprooting now would be detrimental. Some may think that's a drastic first suggestion but that's exactly what I did to get my son better help and support .

You absolutely must keep your job, this is your time out for now and time to think about something other than your family's needs and your resulting struggles. Since relocating and having my second child I haven't been able to find a job that fits around our new normal and I am desperate to get back to work as I need a break from the monotony of my life. I've just taken a formal complaint covering the last 18 months (since my sons care was moved to another trust - we didn't get a choice) and it's been nothing but incompetence. That has heaped untold pressure and stress on me to meet my sons needs and keep him from dropping out of mainstream school. Things have calmed down now and we are on the verge of an ehcp which will hopefully ease the transition to secondary school (he is also 9 with a couple of terms left in yr 5).

So for you right now all I can suggest to provide some respite is a childminder or some other form of childcare that has experience of autistic children? You mentioned being rural so this may be like a needle in a haystack but is it worth looking into? Would you be eligible for funding if you could secure this provision? If you could argue that it's essential because you need to work f/t to support your family and your sons current p/t schedule is preventing this.

I know how you feel, truly. I absolutely resent the diagnosis and the impact this has had on our family. I struggle with my life now compared to how it was just a few years ago. An additional child plus my husbands more recent diagnosis has really taken its toll on me. But I adore my son and try to meet his needs as best I can regardless of anything else that's going on.

You need to try and get a break somehow, some way and I recommend moving as soon as it's feasible because the support services you need will be closer to hand. You'll still have to fight for it but won't feel so isolated hopefully.

A - would lea provide taxi transport for ds?

B - could you get a tutor for a couple of hours each day? Perhaps there might be funding available?

C - could you get some educational dvds for him.to use while you are working?

D- if no taxi available it may not seem worth it but if you drive home and back while he is at school you would have an hour at home and could chug out the housework in that time if you want to use the time constructively.

Can you ask for a review meeting, preferably with professionals present such as an educational psychologist, with a specific view to talking about a reintegration plan that the school will stick to? If the school is saying that they are still struggling, then they need specific advice on strategies to meet his needs. Ask for someone from the local authority to be there, since with any luck they won't be too keen on the fact that they are paying for a placement that isn't being used. The school does get quite heavy duty funding to deal with children with difficulties and they really should be capable by now of beginning to extend your son's time in school.

@JudyCoolibar
I agree. The LA has been unhelpful with regards to transport but otherwise they don't deserve the pasting they have had on this thread.

Why isn't anyone angry at the SCHOOL who are the ones who are taking full time funding for a place - which I guarantee as an independent specialist school is probably 30k plus a year - and not allowing the OP's son in? Presumably they have said they can meet need and have happily taken the local authority's cash here. They need to sort themselves out.

Not everything is the fault of the local authority.

The LA have legal responsibility for ensuring the provision on the plan is being provided. When they are made aware this is not happening they have a duty to step in. If they don't they are acting unlawfully. It is the LA job to deal with the situation.

I understand that, sock, but the school is fundamentally the one at fault.
Yes the LA should ensure the child is getting what they have designated.

Call your local MASH team (Google will give you the number). Tell them that you need respite & get them to come & do an assessment. When they come out to do the assessment INSIST that you either need the school hours upping or respite & watch the local authority get his school hours upped quick sharp.

P.S. the assessment you're asking for is an 'Early Help Assessment'. That's the gateway to getting more help.

My Aspergers son is 16 & far easier now but I remember all too well what it was like when he was younger.

"I understand that, sock, but the school is fundamentally the one at fault."

In terms of sorting it out though parents need to concentrate on one who has the legal duty. It doesn't matter who is morally most at fault.

I know a child who has 40k (at least) funding in a state school and is having to work their hours up slowly so even high funding doesn't mean quickly into full time in school. What should happen is provision out of school to make up the hours to full time.

It isn't much individual use to OP but it also isn't that the LA has pools of staff sitting on their hands because they can't be bothered to direct families to the acres of available resources.
Chronic long term underfunding means that their are neither resources or staff. It is all well and good having a legal duty to provide things but you cannot provide what simply isn't there.
I don't expect parents at the coal face to care about this but unless the rest of society steps up and helps provide resources they cannot exist for anyone.

OP, I know you don't want to home educate, but whilst you are pushing the school to fill its hours, you may find interhigh or other online courses useful. With a highly intelligent, demanding child, you are constantly looking for stimulation and at least if he is learning at home, he will be able to latch onto the curriculum at school, when it increases.

I would also start planning now for the future: either a move when your older kids can manage or else a boarding school that is dedicated to HFA. You need that light at the end of the tunnel.

Your local authority should pay for taxis for him to get to and from school x

Really feel for you. You must be totally exhausted. What a terrible situation, which is unfair on you and your son. He deserves an education. Have you contacted The Caudwell Children Charity? They offer support for autistic children and their families, including respite. www.caudwellchildren.com/services/

www.caudwellchildren.com/services/autism/

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