I am not coping with Autistic son

[Anont767]

I am very new to mumsnet so this might not be posted in the right place but I need to offload some steam. Sorry in advance as this is going to be loooong.

I have three children, two of which have special needs. My 6 year old is severely autistic, non-verval, incontinent and extremely aggressive. I get no support whatsoever, he has attacked everyone that has tried to help and no one can cope with his horrific meltdowns. People avoid our house like the plague. He has destroyed so much in our house that we don't even bother buying anything nice anymore. No matter what we try He is still able to strip his clothes off and urinate and poo all over the place if we don't notice in time. We've had to replace carpets and mattresses a number of times. He's even kicked a door off it's hinges. My partner works away from home all the time and is never around so I do 90% of the childcare, when he is home he can't handle the meltdowns so I can't even go far incase our son has one.

Life is becoming unbearable, my other children are suffering and they are so miserable as we can't go anywhere without my 6 year old having a meltdown and it resulting in us leaving. I've contacted my social worker and she says they have no support workers available at the moment and I've to advertise for one myself but we've only had one person interested and he bit her arm so badly she refused to come back. It's just awful. I love him with everything in me but I can not live like this anymore. Every little thing sets him into a meltdown which can last hours. We all walk on eggshells just waiting till the next one. I am black and blue, he's so strong already and his rage is like nothing I've ever seen before. He's ripped hair out my head, bitten me, scratched me and even given me a black eye. He's also very violent towards himself which is why I'd rather he hit me than himself. I try and keep him separated from his siblings If I'm not supervising so everyone is safe, it's beyond stressful.

He barely sleeps and is up most of the night kicking walls and doors, keeping my other two awake. He is prescribed melatonin but it does little for him. I've reached out so many times for help and it seems like there is nothing available for us. Everyday is just hell, I feel so terrible because I know it's not his fault but it's so hard to deal with being used as a punching bag everyday and for your house to be destroyed. My children are scared of him and we can't have their friends round in fear he will attack them. We have to keep our house locked up like a prison or he will escape, which has happened twice before.

I also have BPD, PTSD and depression from a very traumatic childhood and a mixture of other horrific things that have happened to me. Dealing with all of this is becoming so overwhelming I have become extremely suicidal and just feel hopeless. I am on antidepressants but nothing seems to help. I don't see how anyone even without mental health issues could cope with this amount of stress. I get absolutely no breaks apart from when he is in school but obviously now it's the holidays he's home full time for 8 weeks.

My partner would put him into care tomorrow given the chance and I was dead against even the suggestion for the longest time but now I've sadly been considering it. Please don't judge me as until you've gone through it you don't understand how hard it is. I do love my son, all I want is what is best for him and for us all. I'm scared I'm not going to be able to provide the care he needs as he gets bigger and stronger, he's almost able to overpower me already. I'm terrified he's going to really hurt himself or others one day. I am at my wits end. I really don't know where else to turn. Sorry for this long rant but I just needed to get this off my chest as today has been a particularly bad one and has left us all exhausted and beaten down.

That all sounds utterly miserable OP. I’m so sorry. I think it’s ok to explore residential care for a child who cannot function in a family situation. It’s not his fault or yours. Nobody has done anything wrong and it’s not a failure if you are unable to look after him anymore (or never were but battled through anyway).

I don’t know how realistic that option is or how you go about finding a place but just wanted to say I would never ever criticise someone who did find an alternative living arrangement that benefited all parties on the whole better than the normal family set up.

I’m so sorry.

there is no shame in realising that you cannot meet the extra needs of your child without help.

you are describing an unsustainable situation. He sounds distressed, as do you, and everyone in your family.

there is a special needs board - I suggest you ask MNHQ to move your post there because those posters will have solid advice and support to offer you.

i’ll ask them to move the post for you.

Hi OP, I'm so sorry to hear you're going through so much pain and turmoil at the moment. I'm afraid I don't have any experience of children with autism but I wanted to reach out to you in case you just want someone to talk to. It sounds like you need some rest from the situation so maybe care for a little while would be best for you and your family. Sending lots of love xx

What about a residential school?

I wouldn't judge you for considering care . I have a son with special needs and he is nothing like your son but still hard work . I'm exhausted from life !

Have you got a social worker who can help with respite or advice ?

OP you need to speak to your SW urgently and tell them this. Or someone at his school.

You can't carry on like this; no one could. You either need regular residential respite or perhaps permanent residential care.

You have your other children, yourself and your relationship to consider.

Anyone who judges you hasn't a clue how hard this is, and you deserve a medal for getting this far without snapping.

Just sending your this . I can't even comprehend what you are going through. Maybe a residential school place could be an option worth fighting for? It would give you all respite breaks, but also some time together.

I'm so sorry @Anont767 , things sound extremely tough for you. I agree that there is nothing wrong with realising you cannot provide for all of your son's needs, and so searching for options where he can be placed in care that can accommodate. I know someone who did the same, and her daughter became less angry over time as there were facilities to assist her in ways her parents could not. It also gave the parents - especially the mother - the mental and physical space needed to protect their sanity and support/care for the rest of the family. Please do not feel guilty. There are good care homes out there. I pray all goes well for you, and that you see the light at the end of this tunnel.

No judgement at all. And I dont think anyone else would judge in your situation. I think some sort of residential care is best for your situation. You do not need to feel guilty it is best for everyone including your son.

I'm so sorry too. My dd is autistic and life is incredibly tough sometimes. People suggesting social workers here clearly haven't read the part when you said your social worker had already advised there was no support workers available.

Oh, love. I’m so sorry - that sounds absolutely hellish. First of all, are you getting help you’re entitled to? At the very least, you should be getting Short Breaks through your local authority, which could fund some time at a specialist holiday play scheme, to make the summer
holidays less of a nightmare.
Has your son had a referral to CAMHS? If not, try
to get one, and make a nuisance of yourself until you do.

Are you aware of Yvonne Newbold? She specialises in training parents and care-givers coping with violent and controlling behaviour in children. Her basic belief is that this behaviour stems from fear and anxiety, and the only way to improve the situation is to reduce this underlying anxiety. She runs courses online and in person -
I did one last weekend and It made a lot
of sense to me. I’d really recommend it, if you can:
yvonnenewbold.com

You're clearly an amazing mum. It sounds like he needs to go into care so that they start to take both his and your needs properly.
I know it's unthinkable for you but I can't see what else you can do. He needs help and this seems to be the only way to do it.
I'm.so sorry you're all.going through this.

We're really sorry to hear that you're having such a tough time, @Anont767 - we've now moved your thread over to our SN Children topic and we hope you get some helpful support and advice here. Please do let us know if we can help further.

Explore residential care, noone would judge you. I'm sorry I don't have advice on how to go about that but if you do apply, make it very clear that:

a) you are have 2 other children that require safeguarding and your son is a danger to them physically and emotionally - put the responsibility for this onto social services
b) you are suicidal
c) take photos of any injuries

OP it's no wonder you are at breaking point. It sounds like your son needs a team of people supporting him if he's at home, and as your social worker says no support workers are available, you have no choice but explore other options. How could anyone judge you

This xx Or parent carers organisations in your area :) there should be one if you have a Google they are often good advocates.

Unfortunately the social worker sounds a bit rubbish, you are entitled to support and respite and so are your other children.

Sending so much love to you all.

I would never judge you, this situation cannot continue. You should explore residential care with absolutely no shame at all.

its really, really , really tough. My boy isn’t as old as yours but he is a challenge. I’ve had bruises on my arms for a month now from biting and got my hair cut short ti stop him pulling it (it hasn’t worked). Our house is slowly getting destroyed. Everything is cracked, or bent, or has mucky handprints all over it. It’s really wearing.

i don’t have any real suggestions but you’re not alone. Wish I could offer you more than empathy and sympathy.

Oh, OP, that sounds so tough. How old are your other children? It's awful that your social worker hasn't been able to me more helpful. It does sound like a residential setting may be appropriate for your son at some stage - I don't believe this necessarily means putting him into care.

An alternative, finances and the age of your other children permitting, could be a boarding school for your other kids to give them a bit of a break during term time? The state boarding schools are free for the educational component so you pay for the boarding piece only. Apologies if this is a horribly insensitive suggestion - it sounds like an impossibly difficult situation.

I would never, ever judge a parent who decided a residential school was the right setting, but it sounds as if the OP has had very little support to try to improve things at home first. As PPs
have said, social services need to do more, with respite and referrals to other services that can help. If the child has a community paediatrician, they should also be involved.
Have you had a carer’s needs assessment, OP? Social services need to know just how bad things are for you - you’re in crisis, and if they don’t step in to support you, they’ll end up with an even bigger problem.

somethingnastyintheballpool OP has said there are no support workers at present to support at home. I work with adults and we have the same problem. The social care crisis means that often there are no specific respite places, or no support available to visit home. Young adults have ended up having to move out of the family home because that is the only reliable option available to them right now. This wouldn't have happened if there was alternative support. I'm presuming the same situation in the children social care sector. Things round our way are improving slowly but there are fewer options than in the recent past.

For the sleep, there are other medications that you can try. Have you asked specifically for a referral to a sleep clinic? Have you had an OT assessment looking at adapting your home and making it safe? Something like a SafeSpace bed may help.

I presume DS has an EHCP? If so, you should ask for an early review as it isn’t meeting DS’s needs as it is.

Yes, there’s a crisis in social care, but the social worker could do more than shrug her shoulders and say there’s nothing they can do when you are in crisis and the family is at risk of breakdown. The LA could fund the PA at a higher rate which is likely to attract more carers, they could fund 2:1 which might mean some more carers are willing to care for DS as they won’t be alone, they could look at residential respite at a residential school or otherwise, they could look at short term foster care…

Continuing Care may also be a possibility depending on exact needs.

For DS’s siblings, if you haven’t already speak to the local Young Carer’s service and also Sibs. If either of them are under 5 it is worth contacting Home Start.

@dangermouseisace The shortage of carers is definitely hitting the children’s care sector, too. We’ve been lucky in that our LA put us in touch with an agency that has been able to supply the two carers my DD needs (fingers crossed).

But I think the professionals need to go back to basics and look at the little boy’s behaviour and what’s triggering it to be so extreme, and come up with a proper support plan.

Totally agree with @LargeLegoHaul.

The other thing which might help is going through your own GP or psychiatrist. This will be having an impact on your mental health - can you access support that way? After all, they know that if the mum goes down the whole ship goes down.

it sounds to me like you have been coping with an awful lot for an awful long time. You should give yourself credit for that, but that doesn’t mean you should be putting up with this pace.

I cried sore reading this. U described my son my life right down to the t, i am in The exact same boat absolutely everything u wrote. Xo