AIBU to think my life is not going to be worth living any more?

[NotAnotherPinkCandle]

My life feels like its falling apart.
I'm 30 weeks pregnant.
I have a 6 year old DS who is Autistic and has ADHD and PDA tendencies.

This wasn't a planned pregnancy as I've always struggled with DS so never planned for another as I knew it would be difficult.

Found out I was pregnant and decided to go ahead as at the time my situation was fairly stable and manageable and my DS is so lonely I thought it would be the right thing to give him a sibling.

But now my situation has completely changed.

DS has frankly been completely failed by the educational system. For the last 2 years he has only been allowed to attend his mainstream school for 2 hours a day 4 days a week. Mainstream couldn't cope with him or meet his needs.

We tried to move him to other mainstream schools but all of them rejected him.

We decided to move to a specialist school and went through the required process but every available special school also rejected him saying they couldn't meet his needs.

Looking back now I can see how much we were mislead and lied to by his mainstream school but at the time they convinced us that there was no reason the specialist school should have rejected him and that we should take it to tribunal as this school would be a really good fit for him and he would be allowed to finally interact with other children like him and build friendships and start some academic education.

We took it to tribunal which was a 7 month wait. In those 7 months we heard nothing from the specialist school to clarify why they rejected (now believe that information was kept from us by the mainstream school) so continued to believe the mainstream school when they told us the tribunal was the right decision and that DS would be so much better off in this specialist school.

The day of the tribunal came and we found out that the specialist school had rejected because the cohort are mostly non verbal and have profound cognitive disabilities and my son would not fit in there at all. Apart from a couple of students in the cohort who were operating on a similar level to DS. The tribunal discussed being able to move him up a year to be with children with similar needs to him and it was agreed this could be a possibility.

The final decision by the tribunal was that DS should attend this specialist school.

We then heard nothing from them for another 3 months. On the last 2 weeks before the summer holidays DS was invited for his transition to the new school and it was a disaster. We found out he had been held back a year without us being informed and that the entire class are non verbal and have significant needs. DS was very dysregulated and upset, not understanding why no one could talk to him or want to have social interaction with him and was asking when he could return to his mainstream school.

Then it was the summer holidays so next to impossible to contact anyone about this. The LA are completely useless and didn't want to know.

So on the first day of term we didn't send DS as he didn't want to go and we felt it was not in his best interests to send him into that environment. Specialist school agreed that its not the right setting for him and would be detrimental to him to attend and that they tried to say no but the tribunal forced them.

LA say now that it's been court ordered by a tribunal we cannot return to mainstream as they can't meet sons needs either and the LA has to approve his return to mainstream and they won't.

We can't transfer to another more suitable specialist school as there aren't any!

DS can't attend the specialist school as its completely inappropriate for him.

So he is left with nowhere to go.

The best we can hope for is alternative provision 2 mornings a week (as this is all the funding can provide) while we wait the whole of the academic year so that when DS is 7 other specialist schools will become available. Then we have to apply to those and hope they don't reject us so that the whole saga repeats itself!

During all of this happening DS's behaviour has deteriorated rapidly. I think all the disruption and change has been really difficult on him and also the anxiety he must have about a sibling coming soon.

He is now displaying behaviours I have never seem before making life next to impossible.

He is out of control, violent, defiant and destructive. Each day he pushes me to breaking point.

We are trapped in the house as he can no longer cope being around people as his behaviours instantly escalate and go out of control and he becomes a danger to himself and others.

I only have one family member who used to offer a lot of support with DS but due to these behavioural changes can no longer help us.

I have a DP but he is always at work and has 2 other children to support.

I am absolutely terrified of when the baby gets here as I don't see how I will cope with DS being with me all the time with behaviours like this. I don't even have the time to care for myself while with DS let alone a baby.

I'm also terrified this baby will end up being the same as DS and I will have two neurodiverse children to cope with.

I honestly feel so sick with stress and worry that I can't even see how my life will be worth living any more. DS already doesn't sleep, and needs constant supervision. There is no respite from him any more as no school and no family member to help any more.

I don't know what to do. Feel completely desperate and alone.

Is there anything that ties you to your current area?
Orjerwise I’d be tempted to seek out the right provision and move so that you’re closer to it.

I rent from a housing association. Have tried to swap but have no interest in my home as the rent in this area is so expensive no one wants to swap here.
Can't get on the list to bid on a different property as classed as adequately housed and my area has a housing shortage so if you are adequately housed you can't apply for other homes.
Also can't afford private rent as the prices are ridiculous.

the school can’t deprive your son of a full time education as he is of statutory school age. I would push the LA to put in more funding for the interim so that his current school can put in additional support to meet his needs. When he is a bit older, say from year 5 onwards there is usually more options in terms of specialist placements. Have you looked at mainstream schools which have an ARP? (Additionally Resourced Unit) The LA Send teams have high caseloads so you have to be quite persistent.

Please explain to your midwife and maybe discuss birth plans that may be less stressful.

I'm already scheduled to have an elective c section at 39 weeks due to health reasons. I'm dreading what the recovery will be like with DS at home full time.

I can't even express how persistent I have been with the LA. On hold for up to an hour every day, says 1st in the queue yet no one answers for an hour! Then can't get hold of case worker, always told she will phone me back and she never does. On a good week I will get one email off of her at 6pm, neglecting to answer any of my questions and ignoring my request of a phone call instead of email communication as we are getting nowhere with one email a week.

Your son is ENTITLED to a full time education from the Local Authority. Keep that in mind.

2 mornings a week is not a full time education.

You need to go back to the local authority and insist that full time provision is found for him - they cannot leave himmfor a whole year without provision. Have a look for your local SENDIASS each LA has to have one - it's an 'independant' SEN support service.... some are considerably better than others sadly it varies by area.

I'd also contact the social services disability team. They should be providing you with assistance - partocualry with a little one on the way. They will help your pursue a full time school placement too.

Finally your partner - who I'm assuming is his dad - needs to take a tole here. He might work all hours but he still has responsibility for all his children l- and your welfare. He needs to provide you with some space. Even if it is an hour a week to go for a walk. You need to carve out some you time.

I'm so sorry, OP. This sounds so difficult. I don't have any advice, but I do offer my sympathy, and hope that things will get better for you and your family. x

You don’t mention if your DP is the father of both your DS and the baby? Either way, he needs to be more present and help out more as your due date gets closer, and once baby arrives. You aren’t alone as you do have him, and, yes, he works to support his children but so do most parents. I mean this in the most gentle way but you need to ask him to step in and help, at least with the baby. I also think you should push back at the specialist school and ask for a meeting with the headteacher. He’s their pupil and they agreed to certain things so it seems so unfair that they haven’t gone ahead with them. Your DS is struggling as you say since being out of school, so surely as he has a place there must be something that can be done to make it work in the short term?

My heart goes out to you reading these posts, I echo what previous posters say about non stop continuous emails and emails annd emails and finding who’s at the top and contact them, cc people in etc . Sometimes it’s hard to see the wood for the trees so I would encourage you to take up the kind offer of a previous poster to advocate on your behalf, often someone without the emotional attachment to the situation can help put things more strongly and from a. Legal perspective.
If you’d be happy to share your general area/ LA Prehaps theN people could give direct details to call / email etc. appreciate you may not want to do this, DEFINITELY get mp on board. Where I live ( not England) this is sometimes the only way to get things moving.
Also echo the comments about your own well-being and sharing your concerns with midwife- they can contact the children’s disability social work team if you are not up to this yourself.
you sound like you have been doing an amazing job so far, what a caring mum and I hope this all eases for you soon. Big hugs and thoughts to you!!!!

My heart is completely breaking for you. That is all so massively traumatic for you, your son and no doubt your partner. I can't imagine how frustrating all the tribunal etc was, I would feel so suffocated.

You are evidently a fantastic Mum. Your new baby will be so lucky and I have every limb crossed that your son will relish the opportunity to help or to learn about the things he can do to help.

I don't.know.how much spare cash you have but I'd I were you I'd try to get seen by an occupational health specialist privately ASAP beforehand. They can look at what your son loves in terms of sensory stuff as much as attention and give you ways of destressing at home so he can learn to self-regulate. I also think you should reach out to Family Fund: https://www.familyfund.org.uk/ they have a support line that is incredible and can offer help, advice and can even sometimes help with checking benefits entitlement etc.

It may also be worth connecting with home education networks in your area and either doing online learning with them or in person as they often have groups that meet to ensure kids get that social time and learning too. You can find them on Facebook etc or they sometimes have websites if you're in a big enough city e.g. this site has some (but also has a lot of 404 pages so if you don't find what you need head back to Google search): https://www.homeschoolers.uk/community/england/

Massive hugs to you all, I sincerely hope it improves soon.

Is your caseworker at the LA aware that your son has been put on a reduced timetable? Put in a complaint as that will trigger a response from the Head of Service at the LA. The complaints team will chase for a response. Email your MP too

Hi OP I have sent a you a private message xx

Is there an option to place your son in a foster care placement, especially with the imminent birth/surgery/recovery/vulnerable newborn? It sounds like home may not be a safe environment for any of you if your son is at home for the majority of the time.

Has your son had a social care assessment? It should have been done automatically as he is a child in need within the meaning of section 17 Children Act 1989. If it hasn't, write to the Children's Team at SS quoting that section and asking for an assessment immediately, and make it clear that you are in urgent need of respite care and support.

I haven’t read all your posts or other responses but here are somethings you can consider if you haven’t already.
ETOAS (bespoke provision funded by your LA look at sunshine support)
apply for DLA
contact social services for an assessment
have your LA got and autism team that can support?
hope some of this helps

Have you tried the charity IPSEA? They give specific advice on getting SEN educational provision. Sorry to add to the list!

@vibecheck thats a terrible idea.

If you can get your local authority children’s disability team to do a needs assessment you should be entitled to some respite hours per week. Finding someone to do it is easier said than done but you may have someone you know locally who cn do it.
Apply for DLA and if you are not working then carers allowance too.
But you have all been treated v unfairly and I would go to your local MP. You have explained it very clearly and coherently and I would copy that into an email and contact them.

Do children with significant special needs no longer have social workers who help parents navigate the system? I am sorry to hear about your predicament. It must be very worrying.

I see previous posters are along the same lines about support from the Council.

Yes MP is a good idea.

Also think fostering your ND child is a bad idea. He's a baby himself.

Sending you loads of hugs. I've ended up compromising constantly due to a lack of provision. I actually have 4 autistic children, all very different. The one thing that has helped so much is having a local support group and a large number of friends who have autistic children.

I know it's hard to get to groups but I've found just having a Facebook group and people I can message has really helped. The PDA society might be able to point you in the direction of some support as well. Sadly there isn't the knowledge and acceptance there needs to be of PDA and yet it is probably the hardest profile to deal with because you really do have to turn everything on its head and it needs so much patience.

Im sorry if I'm teaching you to suck eggs but I've found the newbould help, not fine in school and eotas matters Facebook groups really helpful and there's loads of families in those who are going through very similar situations.

Personally I would lay off school for now. I know you need a break but if school is causing him this much distress, is that ultimately more challenging? I don't know but it's maybe worth thinking about. All behaviour is communication. He's been through so much change and uncertainty already, maybe some time in a familiar place where he feels safe will help him.

I know it's easy for me to say but having had autistic children who have had significant issues around school attendance, the only thing that's got them into school is helping them feel that they have some control.

Pm me any time. I can't promise to know the answers but I am used to people needing to vent.

Might be worth checking if your LA has something like Parent Partnership or IAS ( information and support), they work closely with SEND team but are independent.

It is a hard battle fighting the LA, I really hope you get a suitable placement sorted soon and the right support in place. I've been in a similar position and spent many hours feeling like I was failing my son but wanted to share my story as things can get better.

My son was diagnosed with autism aged 5, he's been to two main stream primary schools, one special LA primary school, one LA run high school and 2 private special high schools. He was very angry as a young child with outburts of hitting, kicking, spitting and swearing.

He's now nearly 18 and has turned into a lovely lad, left school with zero qualifications as his school gavs him option to not sit exams and we didn't find out until it was too late. I fought to get one of our local colleges to enrol him on a music course and he passed Level 2 music with a distinction and also got functional skills level 1 maths and english. He's just started Level 3 music.