To split up with DH because of the children

[CompletelyNewAgain]

Both DC severely autistic and other disabilities. They scream and attack us all the time they are awake and between them that is around 20 hours a day.

We do get some short breaks and asked for social care respite last year. The respite worked for a bit but literally in the end it was more stress than it was worth and we asked for it to stop. Family are unable to help us anymore due to the extreme nature of their needs.

I just keep fantasising about splitting with my DH (who I love dearly and does childcare 50:50) so that we can have separate houses, share custody and complete breaks from the DC. I actually couldn't cope anymore so went upstairs and abandoned DH but the screaming is just continuing and it's raising my heart rate. I am in fight or flight mode constantly. I feel such a failure and deeply regret having children.

You know you aren’t thinking rationally here. Without separating, you could take turns having even multi-day shifts where you each one of you got to be off-duty if you thought that would actually help.

I wish I had a good solution for you. I just don’t know the system and available resources well enough.

If their needs are this profound, then eventually, they are going to need some sort of outside care. You won’t be able to be their caregivers for the rest of their lives. I know that is a long way away, but perhaps it might be easier to think about utilizing some resources now if you think about what care they will need as adults. Then sort of walk backwards and figure out a gradual transition.

I am sorry things are tough OP. I wouldn't end the relationship just to get respite. What if partner decides he no longer wants contact at all, especially if/when he meets someone else? You could wind up having to deal with it 100%. If you love each other and you are otherwise happy with your partner I wouldn't leave.

[quote AChocolateOrangeaday]@gossipbird Do you have ND kids?[/quote]
My sister does. Residential care was a heaven-sent for her family.

How old are they OP? Have you thought about specialist schooling with boarding? They may qualify for financial help with that if the impact on you is so extreme including physical attacks.
Have your spoken to your DH about this? Does he feel the same?

An alternative is: can you as a couple afford a studio flat nearby where you each spend two nights a week individually, just as if you were working away, so you're still a family but you both get that complete break very regularly?

I am so sorry. It must be so hard.

Firstly it is obvious that you need a break and then a regular night off once a week in a Travelodge or staying with a friend. Sorry to ask the obvious, but have you tried noise cancelling headphones? Could you make your bedroom into a nice sanctuary (with a lock on the door if necessary) and then have a TV up there and connect it to headphones so that you can't hear their noise? Could you soundproof the house a little more? Nobody on earth would be able to cope with that all the time. Nobody. So please don't feel guilty about stepping away at times. I just can't even imagine what it would be like.

I know it doesn’t solve any of the problems, but could you get some ear defenders and wear those to give yourself a bit of a break from the screaming?

I highly recommend therapeutic parenting and would signpost you both to Sarah Naish’s books and also to the FB group pages. Finding the nurture need behind the behaviour has really helped me with my DS who has ASD & ADHD.

I knew someone with a very physically challenging autistic son. In the end she did arrange for him to have residential care and she wished afterwards she'd done it years before. He was happy in the residential home and she loved to see him when he came home for some weekends. Plus she got her life back. It was better for everyone.

You definitely need to do something as the current situation is unsustainable. You sound like lovely parents btw but people can only do so much.

I don't know how this works or if it is even possible for me to private message the OP? I know exactly what you are going through as we have a child with severe special needs who is also a screamer too. Absolutely relentless. All those thoughts and feelings you have are perfectly normal.

Hi OP information with parents in similar situation to you, when you organised respite were you offered direct payments or just a respite service? If it was then later you could always ask if it could be changed to the payments and then you could employ a support worker to help? Where I work we have overnight respite (short stay children's home for a few nights per month) which is lovely but starts from 8 or 9

I have such empathy for you. I have a DS(5) who has ASD/ADHD and he is 100 miles an hour from the second he opens his eyes. However he is high functioning and sleeps most of the time. Having him at school is a godsend. I can’t imagine how difficult things must be for you at the moment with two of them with the difficulties you describe.

However, I don’t think splitting with your husband will solve the problem, more than likely it will leave you with the bulk of the responsibility for everything.

What you need is support, and funds to make that happen. You may have done many of these things below if you haven’t do so.

• apply for DLA for both kids
• check your entitlement to tax credits if you already have them or UC once the DLA is granted which it will be.
• check out carers allowance, even if you earn too much to get it applying and having an underlying entitlement will open doors for more support.
• ask for a carers assessment (google it) this will provide support for YOU.
• investigate a disabled facilities grant. This can provide things such as an extra room for the kids to go nuts in, altered lighting, sound proofing etc etc.
• apply to the family fund if you get UC, tax credits or any means tested benefits. This can provide grants for sensory things, a short break etc.

Keep pushing for the respite care, proper respite. I also agree with other posters about the idea of a caravan or studio flat that you can escape to and potentially rent out when not using it. That seems more sensible than splitting up. Particularly as the kids get older you will need two people there to manage. I don’t think residential is the answer at KS1. It would break me, as much as I feel exhausted (I also have health issues), to part with my child. There may come a time later when it’s appropriate but try everything else first.

Please give yourself a massive pat on the back, for coping with this and for reaching out for help. Keep pushing for the support your family deserve. And take care of yourself.

Op I have no answers but just wanted to send you hugs and

I hope things get a little better at some point in the next few years

I'm so sorry.

I don't know if reducing stimuli would help - noise cancelling earphones, the ones that go completely over the ear could help, though I don't know how old your DCs are. Alternatively have you tried playing baroque music?

My DS didn't start his huge meltdown episodes until he was 9. It was then horrendous for 5 years, he was put on anti ds and things went OK. Except they didn't. He became suicidal at the age of 15. And the anti ds affected his hormonal development. So don't put your kids on needs. Find another way, like CBD oil - talk to the doctor to see if you could try it.

Talk to autism charities, my local branch in b'ham were a m azing. I spent 30mins with a worker and learnt more than I had from anyone else in the 4 years preceeding that one meeting.

So sorry to read what your going through, no advice but is clear your at the end of your tether :( really hope something gets easier for you both soon x

OP, I'm so sorry, it sounds hellish. I have a brother on the spectrum; he is a lot less difficult now he is a grownup. I hope that will be your experience.

It's frustrating how stingy doctors are with MRI scans. Exploring possible causes of pain sounds like a very sensible suggestion. Have you tried asking for blood tests at least, for markers of inflammation, deficiencies etc? Any chance you can go private for such investigations?

Why would foster care be awful, OP? Wouldn't it be good for the children to spend, say, a couple of nights a week with specialist carers who can provide a family type environment? Essentially it's no different to staying with a relative.

I have Autistic DC, but their needs aren't to this level. I do have other things making the situation intolerable, uncontrollable pain and a H who just adds to the problems.

This isn't a suggestion I'd previously have made, but I've had some appointments recently with a clinical psychologist who specialises in medication (not in UK) and works in the chronic pain area. She's made me reconider the role of antidepressants in quality of life. I always thought of antidepressants as something to take specifically to treat the depression/anxiety, and mine is mostly ok, I didn't really see the point of more. Whereas in this setting she treats them as something to improve quality of life in the face of intractable uncontrollable pain, which I have, and to help people cope in intolerable situations. She's adamant they can help. It struck me that you're in constant mental pain and you're in an intolerable situation. Maybe this is something antidepressants can help with or if you're already on antidepressants there are other medications that can added on top to give you the mental space and help you cope in an intolerable situation.

Right I will say this only once op because of how absolutely distressing it is.
A few years ago I visited professionally, a lady who was 93 and was still looking after her learning disabled son who was 70. Her husband had been dead for 30 years. She was lying on the sofa in heart failure. Her 70 year old son screamed, threw stuff, hit me, not her on that occasion and got out of the house as she had been too flustered to lock the door properly when she let me in. We did manage to get him back. This is what he had done all day every day for 70 years. Obviously I raised a safeguarding concern but she had died before he moved into care, so in the end he moved in a totally unmanaged way in a rush. DO NOT LET THIS HAPPEN TO YOU. Engage with any and all services. No matter if its humiliating, or they raise safeguardings or its awkward. You cannot and should not live like this and its already making you ill. Services will go to those who shout the loudest and make the most fuss and those who say loudly and often that they are not coping. I'm afraid CBD oil, or a pat on the back is not going to cut it. It is not possible to manage all disabilities in a home environment. It is actually cruel that some people on here imply that if you did things differently you might have a different outcome. That is not necessarily true. I am sure that you would do whatever is in your children's best interest. If it is in your children's best interest that they do not live with you then that is what you will do. And rightly so. And remember, you are every bit as important as your children.

@MrsPsmalls Thank you for sharing that valuable perspective.

Is there any way of reducing the level of the screaming? Ear defenders or similar? I'm sorry if that sounds stupid. I dont have autistic children but I really struggled with the screaming and crying just from having 2 children very close together and at times felt like my head was going to explode...it impacted my MH.

I wear earplugs when ds is very loud. I am in the same room and can still hear everything that is going on but the plugs take the edge off it.

Have you ever considered a supported living service? I know this must be really hard to even think about. But allot of people in supported living services have over night stays when they want and so much involvement in their personal plan and day today living it's just completed the individuals needs. Allot of support can be given with you having all the involvement.

OP that sounds so hard. Can you call social services and explain how you are feeling? You all clearly need and deserve more support.

I don't know about children services- I work in adults. I'm working with the families whose adult children are much older. The parents are stillnabsolutely devoted and involved in their lives, but their 50/60 year old child was in residential care from childhood and then moved on to adult services. It might not come to residential/might not be an option, but one child with high needs would be intense. You've got 2. It sounds like your family needs a lot more practical help.

@MrsPsmalls
My goodness, that sounds hellish for that poor 90 yr old woman.
What a wretched existence for the both of them.

Of course CBD oil and a pat one the back won't help this sort of thing!
But it gets trotted out so much as ''Advice'', on many forums for behavioural and physical issues.
A Community pharmacist said CBD is the snake oil of our era, much as '' Beecham's pills or Ellimans embrocation'' were in the 19th C.

I am inclined to believe him.

For cases as severe sounding as OP's, with children still so young, one can only imagine it will get far worse the bigger and stronger [and louder] they become.
Some form of urgent respite is needed, and fast.

They need to be in residential care.
They will be happier and so will both of you.