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Original poster

Can't do this any more. Losing the will to live.

37 replies

BakedBeanzies · 24/02/2022 20:05

I'm really really struggling. My DS is 5, is autistic, PDA and possibly ADHD but can't get that diagnosed for another year and also has ARFID.
Things have gotten absolutely awful since he started school this year and everything is totally out of control now.
He lasted at school for 4 weeks before they put him on reduced hours where he only goes for 2 hours 3 days a week. They have no intention of extending this and have said if I push for him to go back more they will exclude.
His EHCP has been sent to some of the specialist schools in the area who take his age group and 2 have not replied and one has straight up rejected him saying they can't meet his 'extreme needs'.
There is literally no support from anywhere. Everything i have been put in touch with has failed to offer any support and I feel like I'm drowning.
My partner has given up, says he can't cope any more and barely comes home as he hates it here. I have no family whatsoever so no support there.
DS is really struggling so his behaviour reflects this. He has destroyed everything in the house, everything has been broken, taken apart, damaged etc. He is getting so physically violent, I am a punching bag all day long. Because of the PDA everything is a battle and results in meltdowns from the minute we get up until the minute we go to bed. Bedtimes are horrible as DS struggles to stay asleep so we are functioning on about 4 hours of sleep a night. He has ARFID so his diet is extremely extremely limited and he doesn't feed himself so I have to spend about 2 hours every meal time feeding him. We can't really go out any where if there are people about as DS is physically rough with other children, is very impulsive so will run off or jump into roads in front of cars etc.
I feel like every day of my life is torture. I honestly have never been so miserable in my life. Its awful but I just wish I'd go to sleep and not wake up as this just feels relentless and never ending.
I have become extremely sensitive to noise and as DS is a sensory seeker everything has to be on full volume all the time and on repeat and it drives me mad. I also have become very sensitive to being touched at all due to being hurt all day long so when I say I feel like I'm being tortured it really feels that way.
I just feel utterly helpless. Feel awful for DS too as all of this must be horrible on him too and I can't imagine how he feels when all day every day I'm stressed and shouting at him or crying because I am so burnt out. Its not his fault and I know that but I'm only human and I can't cope with this any more. I don't know what to do.

OP posts:
newbiename · 24/02/2022 20:13

God, I'm really sorry to hear this. No useful advice I'm afraid , I hope someone posts who can help you.
What about respite through social services?

Babyroobs · 24/02/2022 20:26

I'm so sad to read this it sounds awful. I think you need to speak to your health visitor and explain how much you need some help .
It sounds like you are seriously at risk of a breakdown and unless someone takes care of you this is going to reach a crisis situation. As above you need some respite care for your son. Please make an appointment with your Gp or health visitor ( if you still have one) and explain how bad things are.

x2boys · 24/02/2022 20:31

Do you have a parental independent advisory services in your lea ,school can't just arbitrarily reduce his hours ,what does his EHCP ,school would be acting illegally if they are not following it ,have a look on your LEA ,local offer for advice and guidance

Interested in this thread?

Then you might like threads about this subject:

5 year olds
Googlecanthelpme · 24/02/2022 20:33

I don’t have any direct experience OP and I’m sure someone will be along who is much better placed but if I were you id probably be self referring to social services and tell them you are on the brink of handing your child over.

It sounds extreme but what else can you do? You can’t continue as you are but whilst you manage to scrape by then you won’t get the support you need, they will continue to overlook you.

x2boys · 24/02/2022 20:33

@Babyroobs

I'm so sad to read this it sounds awful. I think you need to speak to your health visitor and explain how much you need some help . It sounds like you are seriously at risk of a breakdown and unless someone takes care of you this is going to reach a crisis situation. As above you need some respite care for your son. Please make an appointment with your Gp or health visitor ( if you still have one) and explain how bad things are.
Respite is incredibly hard to get ,and even if someone manages to get some it's extremely limited ,I m sure people are trying to be helpful when they suggest respite but in reality it's not at all simple to obtain .
x2boys · 24/02/2022 20:35

@Googlecanthelpme

I don’t have any direct experience OP and I’m sure someone will be along who is much better placed but if I were you id probably be self referring to social services and tell them you are on the brink of handing your child over.

It sounds extreme but what else can you do? You can’t continue as you are but whilst you manage to scrape by then you won’t get the support you need, they will continue to overlook you.

Not a helpful response .
x2boys · 24/02/2022 20:40

I know it's really hard op i have a severely autistic child in a special school , so I do get it ,if school can't meet his needs than the LEA is legally obliged to find a school that can

WishIwasElsa · 24/02/2022 20:40

Do you have services involved, I feel you need some strategies to help you manage. I don't feel placed to give advice myself on how to manage. Is there anything he really loves that you can use as an incentive.

Original poster
BakedBeanzies · 24/02/2022 20:44

As the above poster has said, respite is near impossible to get. I have been referred to so many different services but everything has long waiting lists and a distinct lack of funding so once I reach the top of the waiting list the actual services they can offer are limit and often unhelpful.
This is why I've reached burnout. There is just no help or support out there and I feel totally alone in this. Even just having my DS go to school for one full day would be a helpful break for me but the school just won't do it. I can understand why because of DS's behaviour while he is there but I just can't go on like this. The specialist school rejected him so now its back to square one sending his EHCP to the next specialist school that will take his age group, the whole process takes months.

OP posts:
cloverleafy · 24/02/2022 20:45

Practical head... your child has an EHCP. Your LA has ultimate responsibility for ensuring the provision is provided and that he has a full time education. Get loud with your LA. Complain. Demand an emergency review. Contact your local MP or county Councillor. Be that parent.

Simultaneously get on to SOS SEN, or IPSEA, or the education helpline of the National Autistic Society. They will be able to help you with the right words and legal references about your LA failing to meet their statutory responsibilities. Your local SENDIASS may also be able to help, and/or suggest more special schools for you to research.

Next, are you known to your local social services. Every LA has to support families with children with disabilities. It is NOT the same as safeguarding or abuse/neglect referrals. They don't like providing that support and again you may have to loud and pushy, but you have a right to a social care assessment. It may lead to some respite, or direct payments, or other support.

Do you get DLA? Carers if appropriate?

Emotionally. It's rubbish. I'd have used a 4 letter word there, but I don't know if mumsnet allow them. It's exhausting and soul destroying. All the fighting I'm describing probably makes you want to cry.... but the reality is if you can get your children the right school, they will be calmer and easier to handle and you will get that window of respite each day.

Are you part of any local to you parent support groups? Knowing other people who are going through the same things is so so valuable.

It's not your fault. You're not doing it wrong. You are being let down by the system that is meant to help you. You are doing your best.

Mojoj · 24/02/2022 20:48

You will have a nervous breakdown if this continues. You and your son are being severely let down. You need to contact Social Services and say you are in crisis and will be surrendering your child into care if there is no help. Social Services in the UK are on their knees and are, for the most part, only fire fighting. Don't worry about them taking your child from you. They will do everything to make sure they don't have to find a foster placement for him. As there aren't any. But, you need to demand that you and your son get the help you need. Good luck.

x2boys · 24/02/2022 20:51

@Mojoj

You will have a nervous breakdown if this continues. You and your son are being severely let down. You need to contact Social Services and say you are in crisis and will be surrendering your child into care if there is no help. Social Services in the UK are on their knees and are, for the most part, only fire fighting. Don't worry about them taking your child from you. They will do everything to make sure they don't have to find a foster placement for him. As there aren't any. But, you need to demand that you and your son get the help you need. Good luck.
In reality most people don't just surrender their disabled child ,you can't just demand help ,sadly there are loads of families like the Op,s who are struggling
Original poster
BakedBeanzies · 24/02/2022 20:52

I asked the schools SENCO about social services involvement and was told that basically that service doesn't exist so I was referred to the children's centre instead and after the 5 week wait to get an appointment with them I was told there is nothing they can really offer me that'll help in my situation. Its just going round and round in circles desperately trying to get some help. Its awful.

OP posts:
NameChanged15729 · 24/02/2022 20:53

I’m so sorry things are difficult for you at the minute op Flowers

I don’t have much practical advice to add but I would contact the local authority and talk to them about the position the school are taking. I may be cynical… I’ve had a fair few battles with my children’s school being discriminatory, but I’m not sure what they are doing is completely legal in regards to your ds.
I’m pretty sure that legally they have to meet the provision that’s stipulated on the ehcp and if they can’t the local authority has to find a suitable school for him that can meet his needs.

I hope things get easier for your family soon.

x2boys · 24/02/2022 20:57

@BakedBeanzies

I asked the schools SENCO about social services involvement and was told that basically that service doesn't exist so I was referred to the children's centre instead and after the 5 week wait to get an appointment with them I was told there is nothing they can really offer me that'll help in my situation. Its just going round and round in circles desperately trying to get some help. Its awful.
Sounds like they are talking crap tbh ,legally you are entitled to a carers assessment ,in reality anything you get offered will be limited, it's a really shit system
Imitatingdory · 24/02/2022 21:12

OP I have replied on your other thread but I just wanted to reiterate the school are acting unlawfully with the part time timetable and you can challenge it. On top this you can force the LA to provide alternative education. And unless the SS is wholly independent the LA must name your preference regardless of the school’s objections unless they can prove:

  • The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or
  • The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
  • The attendance of the child or young person would be incompatible with the efficient use of resources.

Respite may not be easy to get, but it is possible. And if you appeal the EHCP you can request SENDIST look at the social care provision too. The recommendations aren’t binding but if the LA don’t follow them they have to write to you and SENDIST, and depending on specifics you may be able to complain to the LGO or begin Judicial Review proceedings.

Be careful with SENDIASS, some are good but too many repeat the LA’s unlawful policies. IPSEA and SOSSEN are better.

cloverleafy · 24/02/2022 21:12

@BakedBeanzies

I asked the schools SENCO about social services involvement and was told that basically that service doesn't exist so I was referred to the children's centre instead and after the 5 week wait to get an appointment with them I was told there is nothing they can really offer me that'll help in my situation. Its just going round and round in circles desperately trying to get some help. Its awful.
You can refer yourself to Social Services. You need to be polite and firm and keep repeating that you are the parent of a child with a disability and that you are entitled to an assessment. Again, local parent groups may have hints & tips on how best to navigate the system in your area.

It sucks. You shouldn't have to fight for every tiny bit of support. I'm sorry you're not getting more help.

Original poster
BakedBeanzies · 24/02/2022 21:16

Thank you, I didn't know I could refer myself. I will look into that. I am in some support groups on FB but I lurk more than post as I prefer to be anonymous as its hard to talk honestly about my feelings and have it linked to my actual profile.

OP posts:
Hohofortherobbers · 24/02/2022 21:22

If you refuse the restricted timetable and allow the school to exclude your ds then will that force the LA to prioritise him for specialist education?

x2boys · 24/02/2022 21:23

Local groups are better than general disability ,as you can find out about other people's experiences of specialist provision etc ,my son is nearly 12
You do learn a lot over the years about what's available and what your entitled to

cloverleafy · 24/02/2022 21:29

This might help you get started... www.specialneedsjungle.com/childs-rights-social-care-support/

Do consider sticking your head up and asking questions in those facebook groups. Most of them are closed (all my ones are anyway), so you should just be heard by other people who are going through the same thing. Face to face groups are also starting to come back around here. Or do they have a helpline, where you can chat to volunteers who are also local parents of children with SEN.

jorisisboris · 24/02/2022 21:40

Agree with cloverleaf. It really is a case of 'he who shouts loudest'. You have to make a complete nuisance of yourself to get what you and your DS need. I have two children who have ASD with PDA traits, so I understand some of what you are going through.

Does your local council have a MASH (multi agency safeguarding hub)? You can self refer and they will hopefully allocate you a support worker.

You can also contact SENDIASS - www.kids.org.uk/sendiass - they can give support and advice.

If you are on Facebook there is a very active PDA group who are very supportive.

Good luck and don't give up. You can do this xxx

Somebodylikeyew · 24/02/2022 22:05

I’m so sorry, it sounds relentless and brutal.
A few thoughts from me:

  1. He’s clearly not pulling his weight like he should be, but would your partner commit to doing a couple of blocks a week of 2-3 hours childcare, so you have at least a short break to keep you going?
  1. The school are illegally excluding him. Put that in writing to them, and copy in the Governors and the LA, and say you’re not agreeing to it any more. All it does is keep your son hidden- sadly often LAs don’t act until forced to.
  1. If there’s anything breakable left in your house, put it all away somewhere. Put everything away you can- have you got a loft even? Even if it means your house looks bare while you get through this patch at least it’s less to worry about.
  1. Keep demands as low as you can while things are particularly bad- safety only where possible.
  1. Google “sensory seeking strategies” for other things that might help- ice lollies, crunchy food, things to touch/throw himself into etc. And consider ear defenders for yourself when things get too much.
  1. If sleep is an issue, ask the GP/Paediatrician about a melatonin trial.
  1. Whenever you speak to a professional, give them the warts and all version- what your worst day is like. Show them this thread. Don’t be brave or minimise it.
  1. Your LA will have a Short Breaks service, and a way of referring yourself to Social Care. They will both be on the LA website somewhere. Apply to/refer yourself to both.
  1. Keep on at your SEN team to consult with schools urgently. Email or ring them often. Be the one they can’t forget about it- it’s shit but that seems to be the way.

Sending you a hand squeeze. You are doing so much better than you give yourself credit for x

Overdon · 24/02/2022 22:31

It’s exhausting and soul destroying isint it? I have been in a silimar potion to yourself.

One thing that jumped out at me is the wait for diagnosis, we were stuck on waiting lists for years, eventually scraped money together to go private wished I could have done it earlier. It isint a magic wand, but found it was harder for others to fob you off once a diagnosis received.

Also once we got diagnosis I contacted the SS child disabilities team using a template from SCOPE charity to request assent for DS and myself (my mental health was in the toilet at this point).
I have also found IPSEA to be remarkably helpful.
HugsFlowers

Imitatingdory · 24/02/2022 23:09

Overdon you didn’t need to wait for a diagnosis before requesting social care assessments. A diagnosis isn’t required.

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