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

[BakedBeanzies]

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.

Part time timetables such as this are unlawful whether or not you agree. The school are unlawfully excluding DS. Don’t allow them to continue. The school would have to follow procedure if they were to exclude, you can challenge them and it would provide you with evidence for the EHCP. If you allow the situation to continue it could go on for years.

If DS cannot attend full time the LA have a statutory duty to provide alternative education. If they refuse you can force them to via Judicial Review.

Have you looked at all the schools within travelling distance including out of area and independent schools? Do you have a school you want DS to attend regardless of whether the school says they are full or can’t meet his needs? If so and the school isn’t wholly independent the LA can only refuse to name it if 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.

The bar is high and the LA can, and must, name it even if the school object or don’t reply if the LA can’t prove one of the above.

Did the EHCNA include all the necessary assessments - SALT, OT, psychiatrist/clinical psychologist, social care etc? Is there SALT, OT, MH provision in the EHCP? Have you had social care assessments? A carers assessment for you and an assessment via the disabled children’s team for DS.

Have you asked for a referral to a sleep clinic?

This sounds tough

I think the advice I'd offer would be that having been there, things DO get easier (DS is 7 now and far less challenging than he was at 5)

The period of shifting from mainstream to SS is difficult and an uphill struggle (Ask me how I know) but you'll get there - The vast majority of sen parents do- It's pretty rare not to find a suitable setting eventually.

Around the home we found that after a campaign of 'DS Proofing' the house things got easier. Just daft stuff like attaching pictures to walls with strong Velcro so he couldn't impulsively grab them, generally de cluttering surfaces and setting up some clips to hold the TV to it's stand (Pushing it over used to be a favorite trick)

As far as getting physical, Yvonne Newbould (Spelling?) apparently offers some good advice around this, we too used to have issues where that's concerned but mercifully not as much these days.

Hi OP, I have a 10 year old son with PDA, whilst he's not as challenging as your son sounds (he's in mainstream school for example) he is definitely a huge handful and tests me and DH on a daily basis.
I will say he is a lot easier to reason with now he is older and, thankfully, getting less aggressive. I recall reading somewhere that for some children with his type of profile, his emotional age and ability to regulate are around 2-3 years behind peers, and this fits well with DS - he was still having epic toddler style tantrums age 6, but this has gradually decreased. He's not thrown a chair since he was about 8.
I don't know how far you are on the knowledge path of info so don't want to presume anything, but I've found loads of amazing advice on Facebook support groups about how low demand parenting works in real life, and I highly recommend reading The Explosive Child if you've not already.
My DS is also a sensory seeker and I think getting his sensory needs in balance is half the battle for us - in our house this means a constant supply of ice lollies and chewing gum, lots of wrestling games, trampolines and weighted blankets. Obviously this could be totally different for your DS but an OT could help to do a full assessment.
There have been times when I've felt so depressed and alone, and when DH and I have really not seen eye to eye about strategies, so I do feel empathy for you, I really do. It's so hard.

On the sleep issue, this is probably controversial but I give DS half of one of these gummies each night
www.superdrug.com/Health/Sleep-%26-Relaxation/Snoring-%26-Sleep-Remedies/Dozybears-Ultimate-Bedtime-Supplement-60-Gummies/p/815608

They're not for children technically but I did loads of research on the ingredients and I was reassured that they weren't going to do any harm. In reality I thought they would be a placebo (DS gets himself really anxious if he's not asleep by a certain time, which them results in meltdowns that mean he can't sleep...vicious cycle). Anyway they've really improved his ability to calm down at bedtime, and I can really tell a difference if we miss a dose.

The other option would be melatonin which you'd have to order from the US - that was going to be my next option if these didn't work. Everything is so much easier when you've had more sleep.

I replied on your other thread, but reading this reminded me about being realistic. Not accepting the rubbish status quo in school terms, but proofing the house as far as possible to minimise the damages and my consequent anger.

Thank you to the previous posters who have offered suggestions. I will look into what's been suggested as I will literally take any help i can get right now. I'm just feeling so exhausted and defeated. Its somewhat comforting to hear that it may get better with age. I do think DS is about 3 years behind so makes sense that as he's older he may calm down somewhat but its just getting through right now that is hard. I just feel so helpless and burnt-out and I'm worried that I'm making things worse as I am struggling to be a good parent when I feel like this every day.

In terms of getting things as calm as possible, have you tried completely removing all demands for a few days and seeing how this affects behaviour? Then you can gradually add in the basics in order of importance and see what his tolerance level is? I find this really difficult to do as I have 2 other children so I have to find a bit of a middle ground, but I often think if I only had one, I would try this strategy.

I have never tried that as DS is so impulsive and has no sense of danger that if I was to stop putting demands on him he would most definitely do something that would get him hurt or he would break items in the house that are difficult to replace. Even just demands like "don't climb on the kitchen counters as you may fall and hurt yourself" cause meltdowns. I suppose I could make the effort to reduce the amount of demands as much as possible and see if that helps calm things though

I am so sorry you are going through this.

Have you looked at any medication options? My son is 6 and similar to yours. A lot of meltdowns. We have found medication is not perfect but controlling for some things can make life more bearable.

My son gets melatonin to help him sleep. Because he’s better rested he’s less ratty. One thing that helped.

He’s been on stimulant and non stimulant medication. His current non stimulant medication helps with anxiety. This has reduced anger and meltdowns and violence, and also seems to have taken the edge off some of his sensory needs. So like before if someone touched him unexpectedly he’d punch them and go nuts now he might flinch and say ‘i don’t like that’. Or if someone ate a banana in front of him before he would (literally) projectile vomit and scream and smash things, now he might run away. So it’s less extreme.

It’s not perfect, we found medicine is not a miracle, but can make things survivable.

I’m with you that totally removing demands for a highly demand avoidant child is impossible. With my son everything from asking him a direct question to asking him to make a choice to telling him he can’t do something he wants to is often too demanding and it’s not realistic to just wrap him in cotton wool forever.

Good luck. It sounds really hard x

If your son has an autism diagnosis the doctor should be able to prescribe melatonin on the NHS, you wouldn’t need to order from the US. In my local SEN support group i would say more than half the autistic kids get melatonin to help them sleep.

Good rest is foundational, without it, everything else falls apart.

I second melatonin. We have only recently started on it and it is such a relief.

My DD is asleep by 8.30, if I give it to her at 7.30pm, and is sleeping right through. So even if it’s been a tough day, I know I will get some downtime in the evening and be able to spend time with her siblings.