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.

Im so sorry you are in this situation, the system for sorting out the schools is an absolute disaster. Firstly, do you have a SEN parents group that you can contact for support?

Practically, check all listed in his EHCP, make a freedom of information request for all of the information sent between the two schools in the lead up, to see if this lack of information to you was deliberate (if it was surrey council it would not surprise me). Contact your councillors and lastly contact the local authority complaints people, can come back to you with a website in the morning.

I would go back to the school that was legislated by the tribunal and find out why they are not providing the service dictated by said tribunal eg down a year not up a year. It is true that they have to abide by the decision of the tribunal but if they said a year up then that is what needs to happen. They will be under their own stresses and strains in terms of children and budgets so if you can as polite but firm as you can be.

the main thing though would be to reach out and get information with other parents with SEN children in the area, homestly they have more information than the case workers/coordinators and heads put together.

Lastly, please try as much as you can to look after yourself and the baby, even if its just taking 20 mins when your partner gets home to try and decompress. You can also contact the autism society and they might be able to help you in terms of advocating for your child. Wishing you all the best of luck.

If you are due to have a cesarean, I think you can ask to have your tubes tied at the same time in the UK? Might at least help to know you don’t have to worry about any more accidental pregnancies. I hope things go OK for you, OP, and wish I had other advice.

lastly, i saw your post about not wanting to go to meet ups. Please dont worry about that, most people have seen it all and would never judge. Honestly I would bet if you can find others they will be in a similar situation and will know better what to do than us

Is your DP fully aware of how broken you are? Obviously he has his job and other kids but this is a crisis situation. I notice you barely mention him. Is he giving you heaps of support and sharing the load?

Specialist schools don't usually work on a 'Year' basis as mainstreams do, so there should definitely be scope to place your child in a more appropriate class whether that's with children their age or those older, younger or a mix. My son is 10 and in a class with 7, 8 and other 'Year 6' children. If the school can't facilitate this due to staffing levels then they should be switching around staff to allow this to happen. There will be similarly verbal and able children in the school and they should find a way to accommodate yours. Children in my son's school move around as needed and are mixed by ability and suitability for each other as much as by age. I appreciate this isn't your puzzle to solve.

As others have said you need to contact the SEND caseworker who manages or managed your son's EHCP and I would copy in the director of education and director of children's services too. If they aren't responsive then contact your councillor and MP. This does move mountains, I have achieved £1000s of additional funding and residential placement for my son by pursuing these people when I was initially told there was nothing to be done. If I can help, and I'd be happy to, please send me a message and I will help any way I can.

Sorry this is an awful situation but the LA does have to provide an education. If there isn’t a school that will do that then I know people who’ve got an EOTAS arrangement with the LA as pp said. They’ve had funding for tutoring including someone to take them to activities which could include home education groups/sports/activities/ which amounted to same hours as full time school. They did have to fight for this I’m afraid. I agree involve your MP and also make a formal complaint and push it through the process and seek advice from SEN groups.

Yes DP is the father of both DS and the baby on the way. He does support as much as he can but I do often feel like I'm alone in this situation as he has never experienced what it's like to deal with this day in day out without much break from it.

Have spoken to the school in depth about the situation and they are stressing that there is nowhere suitable for DS to go within the school.

However upon thinking about it tonight I think I will ask what the options are for when baby is here and more respite is needed than 2 mornings a week with support workers. Perhaps he could attend the school but not have to be in the classroom, just be with a 1:1 or something.

Although I'm sure my post is already very outing to those who know of my situation, I'd rather not share my area as this would then confirm 100% that it's me and I haven't spoken to many people about just how depressed I feel about this.
Sometimes it's easier just to vent anonymously online.

I will speak with my midwife at my next appointment about how I'm feeling now. They are aware of the situation to an extent but I haven't told them just how desperate I'm feeling as sometimes I worry I will be judged and met with the attitude of "why are you having another baby in this situation" but when I first found out I was pregnant I would never have imagined I would be in this situation 7 months later.

Thank you for your kind words.
DS is actually under a OT team but like with everything in our area, they are severely overloaded and underfunded and still haven't been out to our home to do the initial assessment after his OT assigned to him left and a new one took over. The last I heard from them was at the start of the summer when they said they would get back to me and haven't.
I have used family fund before but they are now only offering grants every 2 years due to lack of funding so I will have to wait another year for a grant.

I have joined a few home ed groups on FB recently and have been slowly looking through them so will continue to look for more ideas when I have the energy for it.

My caseworker from the LA is actually not the one dealing with the situation, but the manager of her is. The manager was originally my case worker but got promoted and no one told us of the new case worker so we have never actually had any contact with her as when we do try we are just met with "she doesn't know enough about.your situation, best to stick to dealing with the mamager" but the manager is practically impossible to get hold of.

For example, I rang them again on Monday to discuss funding for alternative provision and was told she would ring me back urgently. I have had no call back so called them again yesterday (Thursday) to be told she has just left the office on annual leave so now nothing can be done until she gets back.

It is so soul destroying and draining having to chase people like this day in day out, especially when DS cannot even tolerate me being on the phone and starts displaying difficult behaviours just to stop me being on the phone.

He did last year and they were of no help. Discharged us within a few weeks saying they could offer no support.

Although it may be worth trying again now that the situation has changed so dramatically.

Social services are free and they can help you contact them and ask for assistance

Social services have a duty to do a assessment sp demand they do even if you have to walk in their and say help me !

I will ask about it when I finally get a call back from the LA.
I do already receive DLA and carers allowance which helps incredibly with funding my DS's diet as he also has ARFID so has a very very restricted diet which is proving quite expensive due to the quantities we have to buy to keep him full. But even with DLA it doesn't provide enough money to fund any kind of sessions privately unfortunately.
Yes, MP will be my next step.

This is lovely to hear @Dizzy82 . I'm glad things calmed down so much for your son. I can only hope my son will eventually calm down and get through this and come out the other side a happy boy.

I have spoken to him about it but I find whenever I do it becomes almost like a competition of which one of us is struggling the most mentally. He always reverts to saying he has two other children and a stressful job to worry about on top of our situation with DS. I don't think he will ever understand just how hard and soul destroying it is as he has never had to have DS solely on his own for even 24 hours. He has always had me there or my family member to support.
He does try and help as much as he can though with making phone calls and chasing the LA and the school so it's not like he does nothing. But I think I barely mention him as I do feel alone in this, like the whole brunt of it falls to me. He gets to stay at work late in the evenings and not have to come home to deal with it. I know work is work but even that is a bit of respite as he gets to be away from the difficult situation at home and actually speak to other adults.

Thank you for this advice and the offer to help @apapuchi . My next step will be contacting the MP as I don't seem to be getting anywhere with any of the other services.

,1. Request that the special school arranges an urgent interim review of the EHCP to discuss a change of placement.

1. Contact SOS!SEN and ask if they will write a letter before action re: The LAs failure to provide suitable alternative education and the provision in the EHCP as they legally should. This is the first step of Judicial review proceedings. The letter is normally enough to get things moving . SOS!SEN are an excellent charity and provide these letters but may have a cost.

1. Get your MP involved.

If you can give an idea of where you live some of us may be able to suggest other schools.

This is a so sad but unfortunately a growing trend, please contact your local SENDIASS they will support you in the process.It is the local authority's job to find a place for your child to learn, if they cannot provide a place that is appropriate then you can request a place at an independent school, you would have to prove why it is the best place for your son, but if the LA don't have any schools that will alleviate w him to learn and socialise at an appropriate level this shouldn't be a problem.So sad that it is a fight for so many parents to get the support their children need.

Hi
I haven’t read all the replies but have you contacted siass? Each la legally has to have an independent support information service for parents, you need to speak to them. If you are struggling to find them, what area do you live in?
ivwoujd keep at sen school, they will tell the la they can’t meet need and it is back on the Sen team to find an appropriate placement, not on you. You need to push the ehcp caseworkers as he is being failed and missing his education. Message me if you need help, I work in this field

I'm sending you so much love and energy op. I absolutely understand why you feel like this right now. Could you ask the local send groups if there is anyone who could visit for a chat? Who could at least pop the kettle on and understand your sons behaviour so you get a change in your environment and a listening ear. Could you ask your relative to walk your baby (when they arrive) in the pram for an hour regularly so you have just one sometimes? I had a local lady who was dbs checked help by just playing with/walking my baby, she was a local teacher waiting for grandchildren who helped me for free.

The PDA society is very helpful. I realised that my husband is autistic with PDA, the same as my child. He can't help me the way a NT husband could. Do you think this could be the case with you? Maybe that's why you feel so alone.

You did not know seven months ago that you would be in this situation and you don't know where you will be in another seven months. Take all of the excellent advice on this thread and hang in there.

Op the relative that helps out but can’t cope with ds - maybe they can help with your baby? Have you spoken to them? Have you been totally open about how desperate things have become?

Do you have sure start in your area? If you speak to them, someone can be lined up to help or even start now?

Dp needs to apply for extended parental leave to look after ds for the first 3/4 weeks when the baby is born. He will then soon understand the pressure you are under 247. He doesn’t get to opt out of this because it’s too hard. Does he have family that could help?

Is your son medicated? It doesn’t sound like it, I would push for this.

So much great advice here.

While you await and investigate schools would it be possible to join one or two weekly activities that give you a reprieve? I'm thinking of .. Riding for the Disabled, a specialist swimming lesson or an outdoor park/playgroup or indoor tactile painting and playdough group.
Also look into a yearly pass to a local animal park or zoo where you could visit every week and where your seven year old could learn the layout and animal feeding routines and times etc within the boundary of a fence so he can run a bit.
A simple balls skills presoccer type activity with coaches might be fun too.
Would a pet cat, budgie or small old calm dog be a suitable companion for your child and give you less intensity at home?

I'm sure you probably know that independent special schools are an option - fully funded by the LA. But just in case... The local authority will never consult with an independent school unless you specifically ask them to consult a named school. This means that the research to find an appropriate school is completely down to you, and it's a tricky and timeconsuming process (I have been through it very recently). If you haven't looked into independent special schools in your area, feel free to drop me a PM, and I will do a search for you. If LA special have said they can't meet need, you might even get there without tribunal - our LA conceded once we had a placement offer, despite it being with probably the most expensive school of its type in the country!