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.

I have no understanding of the system or what you are going through, but I am appalled at how they are failing you and your son, I'm so so sorry.
You sound amazing, and like a truly lovely mother who has tried so hard for your little boy and would no doubt be as amazing for your second born. Sorry I have no advice but I didn't want to read and run. Wishing you all the luck and sending love ❤️

@Fedupwithitx

Thank you for your kind words.

I am so sorry you are going through this all whilst growing another human being. Try and look after yourself as best you can. Can you contact your local MP to see if they can push the LA to get him back in school? Your child has the right to be in education. If in mainstream he deserves a dedicated teacher assistant to be with him. The school should surely get funding for this?! Are there any local charities you can contact to give your son/ you some rest bite from each other? Even if its just a few hours a week. Maybe your GP surgery would know of some if google doesn't help. Your not alone in this. Sorry I don't know exactly where to point you but i wish you well.

OP that sounds so incredibly difficult. It is clear that you want the best for your son and that the system has let you down so badly. I'm so sorry. It is completely understandable that you are so worried and apprensive about the future. I hope some of the professionals are able to offer some support when you have your baby. Best wishes xx

Could you contact your LA for social care support? A social worker could put pressure on education and could look at repsite etc for you?

What you've been through sounds utterly soul destroying. I hope you get some help.

I think writing to my local MP is going to be my next step as other than that I don't know what I can do when every system is failing.

His mainstream school did get him a 1:1 teaching assistant towards the end of his time there and she was so fantastic and he made so much progress. That coupled with the alternative provision he had for 4 mornings a week then the 2 hours of school 4 times a week meant we were in an ok routine where I got respite and he got something to stimulate him a bit.

Of course he still missed out on all the social side of it which he desperately craves but we were promised all of that at the specialist school but it turns out he's even worse off there than he was in mainstream.

Unfortunately no charities or organisations where I live. Funding here is almost non existent. There is no support.

@makeminealargeoneagain Thank you.

I had a very angry ND child at one stage, and play therapy worked wonders. If you can afford a couple of sessions a week especially while he's not in school it could really help.

Soul destroying pretty much sums it up. I feel like I have nothing left any more. I'm so burnt out from it all that the future looks totally bleak.
It's not my DS's fault and I love him dearly but I have had to sacrifice my entire life for him to be able to support his needs. I have no friends any more as can't maintain friendships, can't have visitors because of the way he dysregulates. No time or energy for hobbies and frankly feel too depressed to care about any hobbies anyway.

Not to mention the health implications being stuck in around the house for so many years has had on my body.

I'm just exhausted and don't see an end to any of this when the system is failing like this.

@Orders76 Sadly I can't afford anything like that.

So sorry OP.. this sounds so incredibly difficult for you . I would suggest looking for some useful fb groups where parents facing similar can offer support and advice . Sometimes it helps to know you are not alone in what you experience and you may get some good advice.
There is a great book called Mercury's child that is a guide for behaviour and implementing a system to manage such difficult behaviours .

Agree with others , self-care is vital for your own well-being to be the best for your DS and new baby, even if only small things like a hot bath etc. sending all good wishes x

I can’t offer my advice but sending you much sympathy, and admiration for how you’re battling for DS. I hope you soon get the solution you and DD deserve. xx

Whatever you do don't give up yet! There will be appropriate specialist schools, you just need to look very widely to find them. The current Special school needs to immediately hold an annual review where they explain and evidence to the LA , using his EHCP why they are not able to meet need. If they failed to do what they said and put him with the more able children they need to explain why they did it. You will need the evidence to get a new place.
You will need to contact the local MP, your ECHO and the Head of Children's services and SEND in your local authority. There should be a specific focus on you child because he has an EHCP and is not in school. You can also ask why they are not meeting his needs. The EHCP is a legal document and it highlights his needs. You have every right to ask why they are not being met and if the school can't cope he needs to be moved to somewhere that can. This might involve weekly boarding but residential schooling will help his needs to be met and give our other children some respite. Social care should support with this. His presentation is obviously due to high anxiety and lack of routine. Things will recover for you when they sort his schooling. Ring and email them all daily until things move forwards.

@Badsox Thank you for all this advice! That's really helpful. As far as I understand it though, there are no other suitable schools for his age until next year when a few more become available. Its the interim I'm worried about as only 2 mornings a week alternative provision is not going to provide a lot of respite when trying to manage a new baby.

Sorry if I have missed you covering this, but can you not contact the school and push for the recommendation that he is moved up a year or two so tht he is with children who are of a similar level to him. This was suggested but not followed through.

My heart goes out to you and to him. This is a horrendous situation to be coping with. So stressful and the lack of support is shameful.

Are there any local charities for families of SEN children? We had one locally which I took DS to a few times. The children get to mix and play together and the parents get to support each other and swap advice and knowledge.

Also bear in mind that ASD children hate change of any sort so he might regress for a while but still, in the end, find some connections at the special school. If it is any good...

The school have said moving him up a year is no longer an option as 3 more children have come through tribunals and taken the spaces in those years so they are already over capacity so can't facilitate my son in any above years.

There is a local FB group that offers support and meet ups for parents of children with SEN but because of how out of control my son gets and the fact that he has learned no social skills in his life due to always being kept away from other children, I find going to anything like that incredibly stressful, depressing and draining. Of course I will try for the sake of my son but I always come away from it feeling even lower than before as I always seem to be the only one with a child who goes so wild and out of control.

I really feel for you as it sounds so desperate . I cannot imagine the horror ifthe new baby is also disabled . I do know you sound like a really caring person and will do your best for them but my goodness

I'm so sorry to hear this. The other alternative is trying some of the movement and music from play therapy at home, but that's more work on you and you sound exhausted so I don't want to suggest anything adding to the load 😥

Have you applied to DLA? This could help fund things like play therapy etc

I’d be tempted to put my son at the SEN school for a bit. While not ideal it would mean you can focus on some calm at home for you and the newborn just temporarily and to keep your head above the water. Then reapply for the more appropriate schools when you can

With the way I feel now I think I will actually give up if that's the case. I wouldn't have it in me to carry on..

I think these situations may only just be manageable if you had a big family to support you and lived in an area with good services or were fortunate enough to fund support yourself.

But I have none of these things and it would honestly destroy me to have to go through it all again with a second child.

I have thought about this. Will need to make sure the school will actually take him if this is the case. I'm sure they would push for reduced hours which might be OK but as the school is so far from me DS would have to get a taxi organised by the LA to get there and I don’t think they run on a reduced hours timetable.

Sorry I don't know you but reading your post my heart went out to you, what an incredible load you have on your plate. I know how life worries can weigh you down and make everything seem so bleak and damn hard. Sending you a big 💪to support you and help you keep going.

There's good advice here from people better versed in SEN education etc than me. But if you ever need someone (complete stranger) to write a stroppy email/letter, phone call, chase something up, demand action, advocate on your behalf and just generally kick up a storm at being treated shoddily and unacceptably, just let me know. I am good at admin, from a legal background and like challenging institutions and systems. No one should feel alone in your situation and like no one's on your side or you're battling alone. Reach out to anyone around you and keeping talking and let us know how you're doing. Hugs and support to you and your family.

@frenchgrey Thank you so much. That's really kind of you.