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.

Contact has model letters on their website you can use to request social care assessments - a carer’s assessment for you and an assessment of DS’s needs by the disabled children’s team.

Surely it's the special school who was lying to you then? How would the mainstream school know what sort of children the special school had? Why would they tell you they had kids similar to your DS when they didn't?

@Dramatic Because the specialist school is adamant they sent the relevant paperwork explaining why they were rejecting DS to the mainstream school and the SENCO and are adamant the mainstream school were aware of the cohort and how it wouldn't meet DS's needs but none of this information or paperwork made its way to us, despite us asking the questions repeatedly. We were constantly told "it'll be fine".
On DS's transition at the end of summer term to the specialist school he was accompanied by his mainstream 1 to 1 who would have seen exactly what was going on with the specialist school but said she couldn't talk about it as she wasn't allowed to tell me anything as it could jeopardise her job.

Can the national autistic society help at all?
I used to work with Andy Monaghan who was, and I think still is, director of the wessex autistic society and he is a great bloke so if you are in this area contact him but if not then whoever covers your area

@Cherrylily7 national autistic society would be useless at this sort of thing

My lovely, I'm sorry you are going through this.

I just want to give you some support as we too have battled for a very long time.

After a similar disastrous middle, the best thing that happened was a suitable alternative provision. I asked for a list of the LA approve AP and I went to each one and asked questions, spent time with them, really got the feel for it.

Then I wrote to the funding panel outlining why the provision I chose was the right place.

We got funding for two mornings. Once they are in and coping the provision will start to increase hours. We went from 2 mornings to five days. Fully funded. In a suitable therapeutic environment. They taught English, maths, science, art, cookery, and animal care to GCSE and BTech up to 18. The difference in my child was huge.

We are now at a funded specialist college and doing ok.

You have some options

1. Contact your local SENDIASS they should be able to give you some support.

2. I'd ring the LA educational social worker and ask for an assessment of need. They can support you in getting a suitable placement.

3. You need to be assessed yourself as a carer.

4. I'd contact your co-ordinator for your EHCP and ask for an approved list of providers. Their name will be on your EHCP document.

5. Go and visit all the alternative provision.

6. Write to panel and ask for funding. This usually has to be via your LA coordinator.

7. Once his placement is sorted out take a moment to contact IPSEA and run through the legal side of things with them. The EHCP is a legal document and should be written well for the child it's for.

On a positive note his EHCP will protect him until he's 25. So he can learn at his pace.

And a final note, the LA are responsible for funding and supplying all his transport to and from education. Even if this means a 1:1 to sit with him during a journey. Worth knowing as they usually try to get parents to do it as it's so much cheaper.

You have so much on your plate. I do hope you can get this sorted. Hang in there, it does come together!

You could also look into this although it does require funding to get one-to-one-family support with it long term. https://nvrpc.org.uk/

Please do this and please don't think twice for a second about messaging me for moral support or help with doing any of the door knocking (smashing down) you need to do.

We have been prisoners of circumstance for years with our son, and he has too, we have never fitted into any specialist clubs or groups and it's a distress that most can't understand. He will be going to at least 38 week residential as soon as it can be sorted out, not something everyone agrees with but something he and we need, but we've done the impossible home life and I know that with children whose needs are different from my son's that there are ways and means that can help him and you all to survive and cope and maybe even thrive as a family unit. It's a heartbreak on a daily basis to live this life but they haven't even started to scrape even the surface of the barrel of things that could help and support you all - whether that's traditional schooling or a patchwork of alternative support. I see and hear you and am here for you at any time.

Knock down every door, go to the top. They hate you finding out about the bigwigs but their contact information is out there if you know how to find it. Find out who the local councillor is with the portfolio for children's services including SEND. Email them everything you've shared here, copy in your MP and the LA director of children's services and education. I'm not clairvoyant but I am 99.99% sure they will respond to you and light a fire under those who are currently neglecting your son and your family.

Echoing others that you need social care support too via the Disabled Children's team. You deserve it and are entitled to it. It's supposed to support families and children like yours. I have a two year old in addition to my ten y/o and I have as fierce a sense of needing to protect and support my younger son as I do to get everything my older, disabled son needs. If I wasn't in their ear every single week and so absolutely convinced of their duty to support us then there's no doubt they'd just have left us all to drown. The awful truth, but you can force their hand and we are all with you while you do it.

Please seek help. He needs a medication review with a consultant. Possibly respiridone for the violent rages linked to autistic based anxiety and melatonin for sleep.

If you haven’t already got one, try a weighted blanket, weighted rucksack, hammock, colouring, cooking, trampoline, lego, massage, sensory diet (nothing to do with food), lots of paced practical hands on activities to help him be in his body rather then his head.

Attending the specialist school part time could be helpful - if the placement is a success or failure. Sadly SEN provision is so minimal under conservatives children normally have to repeatedly hit crisis point to access the support they need.

Sadly parents often resort to gaining specialist legal representation to ensure EHCPs are met and if you can afford such a service I’d highly recommend it.

NT siblings are often likely to coordinate their siblings care (supported living or whatever) once parents are gone.

PDA … anxiety gets higher when his control over his environment is lower. Help him identify a safe space to go to when anxious (black out tent, swing in the garden?), minimise demands generally, lots of space when he’s upset, calm environment, offer two or three choices so he feels he has some control (bath or shower? 5 minute timer or 10 minute timer?), utilise an emotions visual so you can gently help him identify and name his feelings and eventually use words to express anger, frustration or whatever.