Autistic DS9 - DH has “had enough”

[Vinvertebrate]

Really need the hive mind on this because I can’t think straight. (For full disclosure, I had major surgery a week ago and I’m still physically/emotionally wobbly).

DS9 was diagnosed autistic at 3, and has many related ND conditions, including ADHD, dyspraxia, sensory processing disorder and PDA. He attended PT nursery from 9 months, and his differences were flagged straight away. Things like not parallel playing, avoiding noise, food/sleep refusal, repetitive movements, lashing out at peers etc. He was thrown out of the local prep after Reception, which he only got through with a reduced timetable and a FT 1:1 from pre-school onwards. He then went to a MS state primary, which also “could not meet need” and is finally in a specialist school, which he (thankfully) loves.

I’m as sure as i can be that DS does not simply need better discipline, and his differences are innate. I’ve been through denial, shame, grief, disappointment and finally resignation. DS is bright, affectionate, chatty, happy, but very challenging and still has meltdowns/violent outbursts.

I have a FT job and some caring responsibilities for a family member. I pick up all the slack with DS’ AN - school, LA/EHCP, pediatrician, OT, Ed Psych, SALT etc.

DH has been hectoring DS tonight over lots of small things - accidentally missing the toilet whilst weeing, not eating tea, a broken kitchen item. DS has been in tears, and I’ve tried to smooth it over, but ultimately DS lost it and socked DH in the face. DS was immediately contrite and tearful. After DS went to sleep, DH sat down on the bed and calmly told me that he couldn’t do this anymore, that he’d never wanted a child (I was definitely more keen than him tbf), and that having DS had ruined his life. I asked him to clarify what he meant and he said “I don’t want this. I don’t want him”. I said that he was making me wonder whether I should get DS away from him for DS’ psychological protection, and he said “I wish you would”. He made it clear that he believes my parenting is to blame for DS’ behaviour.

I’m just sitting here blindsided. I’m NT (afaik) but I was abandoned by my dad at a similar age and I am heartbroken for DS. I know DS is hard work, but if his own dad can’t say anything positive then what hope is there? I’ve always known I’d have to protect DS from the world, but I didn’t expect DH to be amongst the first to take a swipe at him.

I’d be grateful for any advice or anyone willing to share thoughts or similar experiences. and thanks for reading if you’ve got this far.

Your DH is at breaking point, I think you might soon be.
From family experience Residential Care with trained people is not necessarily negative for the child in question. I saw parents and family members overcome by the sense of duty to just keep on keeping on. They refused help and their own health suffered as did relationships.

Dear OP, unfortunately I have a lot of experience in this area. DS is nearly 30, has ASD, LD and is non-verbal.
my first suggestion is to look at the website of the Challenging Behaviour Foundation and contact them. It is an outstanding organisation
https://www.challengingbehaviour.org.uk/

I went to many CB courses, presentations and seminars many years ago and became quite the expert. It didn’t mean I could just change or improve things but it helped me a lot. Especially the understanding that I couldn’t change DS, I could only help and support him but I could manage my own behaviour and reactions. Some of the things I learned

• all challenging behaviour is communication. Anything to improve communication can help. If a child is verbal it doesn’t mean that they won’t benefit from communication strategies including visual cues
• sensory input helps with regulation and one CB expert said that the most effective thing is trampolining! When DS was little he could have one of those ELC trampolines but it is harder as they get bigger. He has a lovely rocking chair which is a nice piece of furniture but also gives sensory feedback
• I also suggest giving serious consideration to medication, if not now then in the future. Many parents are opposed to medication on principle but I’ve seen many “resort” to it eventually and admit they should have done it sooner. Of course it needs careful monitoring and management
• Keep records of behaviour and incidents if possible. Even if you never need to use it, it can make you feel better. The diary I kept for a while was instrumental in getting LA funding and support for us
• make sure you are getting relevant benefits. DS was on DLA from the age of 5 when it was quite unusual, which I had to fight hard for
• - I wonder if CMS is higher for a disabled child, I don’t know but something to bear in mind
• - if you can, buy in help. I had many psychology students helping us out over the years as well as others. DS was in a home ABA program up to age 6 but this was not just home tutoring, going on outings, activities etc with people who understood behaviour management
• find any ASD or disabled activities you can. We used to do a specialist swimming session, trampolining, adventure playground, aromatherapy (🤫) and lots of others I’ve forgotten

i hope some of this is helpful

Too many men are pathetic selfish creatures.

My husband said that if we hadn’t had our youngest, during the teenage years of the older two, he would have left.

Only read your posts but wanted to say you sound wonderful. Whilst I can completely empathise with your husband not wanting the life he has and finding it too much. There are no fixes but I’m sure your son realises he has an amazing mum x

I was able to get the payment of autistic dc's school fees by ex DH included in our divorce financial settlement. He will pay until they are 18. They live with me full time and are at a fantastic school which has done wonders for them.
Good luck OP

What a shame for all involved. I think your marriage could be saved if you reassure your husband that you do understand how he feels, that he's not evil for feeling that way and to tell him how you also feel about being blamed. I think you can work as a team to figure out ways of improvement for everyone.

I think people just label DH as a nasty prick ,probably dont realise how hard it is to parent a child like this .Day in day out it tests the patience of a saint! Men find it harder than women generally I think x10 when a child with problems .DH is probably struggling with you being ill ATM.Wait until you feel a bit better and discuss the future . Hope you feel well soon and try not to fret

Pretty much every parent of an autistic child gets offered parenting classes, often it's all you are offered. In many areas the so-called "support" services are just as good at parent blaming as the OP's DH appears to be.

Men don’t find it harder, they’re just weaker.

OP, it sounds like you’re doing a brilliant job, and you don’t need your emotionally abusive husband.

I agree with other posters saying that although what your DH has said sounds monstrous, that he may just be expressing a moment of absolute despair. Caring for a DC with additional needs (particularly these kinds of challenging ones) is so relentless, that I really don't think anyone who hasn't been through it, gets it. I have had some very dark thoughts during the worst moments, where I have thought life would be easier just to not wake up the next morning.
I love my DC with all my heart, but if someone told me I could leave and it wouldn't negatively affect my DC, I might.

I have a dd who is a teenager and a lot of the same things diagnosed from very young .
it's very sad that your dh is obviously embarrassed/ashamed of his son. That shows such a huge lack of empathy and kindness . He should be so ashamed of himself . What an awful father .
You on the other hand sound like you do everything you can for your child and obviously adore him.
You may find things easier without your dh around . Especially if he is snapping at your ds over the small things that are not going to stop happening.
He has 9 years to accept and adjust to raising a disabled child. And he is failing.

I think there's real mileage in this. And OP has enough to deal with I appreciate too.

I'd personally as calmly as I could sit him down when you're up to it and say ....

' I understand those dark and rejecting feelings you have about how this has turned out. This isn't what we hoped for. It's so painful, it's at times embarrassing, it's rejecting and it makes you feel like a failure. I feel this sometimes too. No one wants a child doing this to them.

You're looking for someone to blame. I'm not to blame for any of it. And neither are you. He has a genetic condition and this is where we're at. We need to be adults now and do the right thing.'.

I love my child and have advocated endlessly. I've also screamed and punched my pillow and said to myself why did I do this. I hate this, I hate you ( I say this alone). My life is ruined. Why. I've said to them you're disgusting, I can't stand you, you scare me, that behaviour is so weird please stop that.

I know I am a highly compassionate person full of empathy. And I have said these dark things 🔝

There's huge shame in these feelings. With enough stress this is a natural human response. Only parents dealing with this particular condition at its worst comprehend how a parent can think and say this. Be grateful you'll never have to understand it.

So there's space here to validate his huge sadness and disappointment. OP you're clearly significantly stronger than he is. And it's shit because you have to be mummy again. The adult - again.

It's time to just be honest about real feelings here. Mum's will overcompensate sometimes for behaviour that is pretty unpleasant. Even though we understand it. We do. Is it really ok to be smacking your parents continually at a certain age? No. It isn't. And we know why he's doing it. But it's hideous after a while.

I'd still look into all the legal things behind the scenes. I'd also find your life may be much easier with your school security, without your husband in the home. If he doesn't stop this blame stuff he's no use in the home.

@Vinvertebrate this is so horrible, I'm sorry you're going through this. My suggestion would be to be prepared to go it alone - take up his offer of as much money as you can get from him and his 1 day a week.

Any child being shouted at repeatedly for things they can't help is just vile.

So lovely of you to take the time to try and help op 💐

it sounds like you have two cogent behavioural strategies. Or frankly none and your DH is struggling to find ways to manage your behaviour.

SEN does mean parenting styles have to change however. You do have to input boundaries and actions/consequences for repeated behaviour.

are there any consequences for hitting, or other types or violence. Are there consequences for deliberate rudeness or types of misbehaviour?

I think your partner should be able to talk about how they feel honestly in that moment without it being held against them forever.

he clearly needs to be more involved in DS diagnosis and appointments. When he is in periphery he will not be able to truly see/recognise DSs struggles.

I do think some support therapy is needed for both of you.

That's rather sad isn't it!

I understand what you mean. I frequently feel I can't carry on ot take any more. The difference between me and OPs husband is that I adore my DS so I will carry on. And I don't blame my DH for the fact DS is autistic or DS's behaviour.
I'm so sorry for you OP. Your H sounds vile and to dump all this on you when you are vulnerable is especially disgusting. I can't believe his attitude towards his own child.
I know that DS's normal is you and his dad living together and I know it's harder for autistic children to accept change but I think he'd be happier long term if you weren't together. It can't be nice being nagged at until he erupts and hurts his dad. It also can't be much fun for DS that year H thinks he's naughty rather than accepting his diagnosis.
You said yourself parenting DS solo would be virtually the same as parenting now so would your son really notice much difference.

i'm sorry you're going through this.. it was honestly one of the smaller reasons my marriage broke down, exH couldn't cope with DS, and DS was withdrawing into himself. DS is also AuDHD, Dyspraxic, sensory processing issues...etc. he was also violent as this age.

I left ExH when DS was 10, best decision i ever made, they have a better relationship not living together, and now 18yo DS is happy, safe, non-violent, not being yelled at or doubted, but just loved, protected, and believed.. and secure in himself and coming on in leaps and bounds.

It's scary, but if your H cannot cope, do what is right for your and your DS.

You are amazing reasonable and fair @Vinvertebrate

i think the fact he spoke with you calmly is good - good honest communication is important. Try to keep talking calmly. Try and get some respite care both together and individually…

Try and also calmly look at what this would mean financially for you both too.
I know some couple who have separated and bought a small flat and then the kids stay in the family home and they rotate and move in the flat when they’ve not got access. Would be difficult for lots but poss not in a situation like this.

good luck OP xx

What a very honest and dare i say it, brave post.

I have one of those kids (among other NT ones), albeit home ed because no suitable space.
He is now 11 and grew out of the angry stage by about 9 and yours will too.

That a ridiculous post @rhubarb007 . OP's son is not your son, and you don't have the first clue whether he will grow out of this like yours did.

I'm a retired teacher of severely autistic children and teenagers, and sadly some were still aggressive during their teens.

I've lost count of the parents who've sobbed on my shoulder, unable to take any more. Occasionally I was the first person the father had been able to cry to.

@Vinvertebrate I'm so sorry that you're not getting the help you need. This is a terrible time for parents like you, compared to, say ten years ago.

Only you know how serious your DH is about walking away, but I wish you whatever it is that you need to happen.

These honest reflections remain between my counsellor and I and anonymous MN!

I'd never ever put this out anywhere ever because it's so unpalatable. My counsellor helps me accept my true feelings. True feelings are pretty unpleasant in this life.

I always apologise to my child for unkindness towards them and hurting them with my words, just to stress.

IMO typical “consequences” do not work. What is needed is positive reinforcement, recognising and rewarding “good” or desired behaviour and finding what reinforces individual children, which isn’t always easy!

Please refer yourselves to social work for support for the whole family. You will likely be offered respite. Sounds like your DH does love his DS it's just getting very overwhelming for everyone.

With PDA , there's a pathological need for autonomy and control. These are the drivers for everything to manage an anxious state of existence.

Giving choices in everything which allows for some control helps immensely.

Letting the small stuff go and reducing unnecessary demands helps immensely. These are the priorities in this parenting situation.

If child wants to sleep in clothes,let them. Don't want to brush teeth, fine, double brush tomorrow morning? Shower every second day. Let them. Don't want to wear a coat, let them.

The pissing all over the seat / floor - give a choice. Do you want to clean it up with these wipes I provided young man or do you want to clean it up with tissues and put them in the bin? Let me know.

This is how life works with PDA. If he enjoys gaming,let him! It's a deregulatory tool. Just allow choices which are gentle games like cycling, football and not the rage ones.

Let him have Alexa in his room. Let him have control and autonomy over it. Let him choose what books he listens to. Control is what he wants.

All these things work. But the dad I fear won't get it.