Husband resents ds with Down syndrome.

[BaronRock]

I really dont know if Im being unreasonable or if my gut is screaming at me for a reason.

Our ds is 4 and has Down syndrome. He starts school in September which is a whole other emotional thing. Hes a lovely little boy but toileting is a massive issue. He hates us changing him at the best of times. Always has. It causes huge distress and meltdowns, especially if hes tired or unwell.

H has been pushing hard for potty training because hes four now and starting school. He is really embarrassed about ds still being in nappies and he hates taking him out because changing him is such a nightmare. The changing tables are often too small, ds panics, kicks off, tries to run away. So H now pretty much refuses to take him anywhere on his own. If I cant go too, they just dont go.

This afternoon ds had done a poo in his pants. When we tried to change him he completely lost it. Crying, stiffening his legs, running away. He wouldnt let us near him. H started snapping and then shouting. He told him to fucking stand still. Hearing that aimed at my four year old made my stomach drop.

The more H shouted, the worse ds got. In the end he was hysterical and running from room to room so I said lets just put him in the bath. That was the only way we could clean him without physically holding him down. Even then ds was sobbing.

After his bath I put a nappy on him because he was exhausted and clingy and I couldnt face another battle. H shouted at me for doing that and said whats the point, youre just undoing it, hes never going to learn.

For background, weve had a horrible few days. Ds has had a cold and a stomach bug at the same time. Hes been uncomfortable and miserable and barely sleeping. Ive barely slept either because its mostly fallen on me to settle him. H is tired too but not in the same way.

After everything calmed down, H said he didnt sign up for this. That he knew having a disabled child would be hard but he didnt realise it would be like this. That everything feels like a constant fight and hes fed up.

All evening hes been off with ds. Ds has been trying to climb on him, sit next to him, get his attention and H has just not really acknowledged him. Not cruel, just distant. Ds doesnt understand and keeps trying, which breaks my heart.

This isnt a one off. H snaps at ds a lot. He expects him to understand and comply like a typical four year old and gets angry when he cant. Afterwards he feels guilty and shuts down, but in the moment ds takes the brunt of it.

I know H is grieving the child and life he thought we would have. I know the school thing is bringing a lot up. But ds is four. He didnt choose this. I cannot accept him being shouted at and sworn at for things he genuinely cant help.

I feel like Im constantly buffering between them. Protecting ds while trying to keep H stable. Im exhausted and starting to feel resentful and scared about the long term impact on ds.

Am I being unreasonable to think this has crossed a line? How do I handle this without blowing our marriage apart or allowing ds to be emotionally hurt?

You didn’t choose this either, and nor did your son.
your DH needs to learn to emotionally regualte, and you and your son can’t be his emotional punching bag. He needs to seek support from therapist, health visitor, school staff, parenting support group, children’s centre , early help etc to deal with his feelings about this and learn some coping skills. You have enough on your plate bringing up your send son without having to gentle parent your husband too. He DOES need somewhere to vent and get support but he should do this externally so he can show up to be a decent husband and father at home. Why is it you doing everything including reaching out for help on a forum? I bet you are working to fix things while he is avoiding - has he stormed off to play golf or video games?

Remorse for what ? He’s struggling to accept life with a disabled child and his resentment is spilling over into his relationship with DS. It’s not a case of showing remorse, it’s needing to access support to come to terms with things and be the parent he needs to be. He’s not abusing the child as such, he’s behaving as he would with a non-disabled child and expecting his son to learn from that in the same way. That’s what needs to be addressed here.

The comment is perhaps a touch blasé in tone, but the value of respite is a valid and important point. It shouldn't be viewed as a treat either, it's perfectly acceptable to view it as a necessity.

Have you spoken to your health visitor? They may have additional resources they can refer you to that are specific to your situation.

They can also refer you to Home-Start if there is one in your area. I was referred to Home-Start when my DD was 4. I found them helpful.

If he won’t accept any help I think you do need to leave, even though it’s so unfair all the hard work will be on you, to protect your son

Your DH has mentally checked out and you need to start planning what to do if he leaves. Did you have an open discussion during pregnancy about the consequences of potentially having a child with DS? Unlike some forms of SEN, DS is screened for in virtually all pregnancies these days so there must be a longer back story. The phrase he didn't sign up for it is significant because you must have made a mutual decision together to forego screening or continue with a pregnancy that may result in a profoundly disabled child. Not all parents are cut out to be SEN parents. It's not acceptable to shout at a SEN child for things beyond their control but it's also not unreasonable as a parent to not want to deal with diapers and poo anymore during school age.

Parent of a non verbal 3 year old here, sending sympathy. It is hard.

It’s obviously something different, but the guys from the Autism Dadcast podcast have just started a virtual pub (message board) for dads of autistic kids. Wondering if your DH might find some support there.

I wonder this as well. For context, my parents were older (in their forties when I was born) My father insisted on my mother having an amniocentesis because of the possibility of DS or another disability, as he said he would not raise a disabled child. While that sounds very harsh, I think it's actually better than what the OP's H is doing!
That said, this child is here now, and he deserves better than OP's H's behaviour. I think specialist help is required, or the OP should probably separate from her husband. If he isn't going to leave her and son, which to be honest it sounds as if he might do.

Of course but have you any idea how hard it is to get respite?

I also agree with this, tbh. I'm childfree anyway, but if I ever had had children I would have most certainly screened for DS, and would not have continued with a pregnancy in that case.

What would your father have done if a child had turned out to have disabilities anyway ?
Amnioscentisis can only check for so much
There are many rare chromosome disorder, s thst are not picked up on pre natal checks and the affects of them only become apparent after birth as the child starts to develop
What would your father had done had his child become disabled through illness or accident during their childhood?

You csn never guarantee a child wont have disabilities, but its not really the point ,as we are talking about a real life child

I don't. I know that my SIL has twice yearly respite. It's not much, but it's something.

Well nobody enjoys changing the nappies of an older child but what's the alternative, leave them in wet and soiled nappies?

I have a good package of respite now ,but its taken years to get that ,my son is nearly 16 .

I'm not honestly sure. Also, I think he was talking about intellectual disabilities more than physical. I'm not saying he was reasonable about it, but at least he was clear about it when there was still time to do something about it.

Of course. I was just saying that while I can understand where this dad is coming from, he also needs to step up and live in the now.

You can't screen for all intellectual disabilities. Everyone who has a child rolls a dice.

I don't think screening is the point. He may have thought he could handle it but has found out he can't, it's hard for anyone to know how resilient they are until they are in a situation like this.

In any case, I think the best approach is to help him accept his son as he is while making sure it's clear verbal or emotional abuse won't be tolerated. Pushing him out or allowing him to opt out aren't in OP's or their son's interests.

That's all very well, and I do agree. However, OP also needs to be prepared for the eventuality that her husband just walks out. I'm not saying that it's right at all, but it is something that she should consider. And honestly, that might have its upsides, as his current attitude is doing none of them any favours.

Poo is just poo. Changing an older child's nappy isn't anyone's hobby of choice but it's not awful or intolerable. The problem here is the distress their child is in, which does sound tricky.

We all risk having a child with SEN or a disability, if we feel we can't manage this we shouldn't become a parent at all. Parents of disabled children are awesome but they aren't made of something stronger than NT parents. I think NT parents are comforted by the idea they are somehow special or different as people- they aren't. It's hard.

OP's DH needs to work through this and find a way to be a parent. I don't think anyone would think it OK for a mum to walk away from a disabled child, it's no different for a dad.

He might do, but he shouldn't, and OP shouldn't hold the door open for him to endorse this.

Agreed. I do have children, but I also wouldn't have continued with a pregnancy that was at high risk of any condition that caused major intellectual disability. I know I'm not cut out to parent a child with those kinds of needs, and while it's impossible to eliminate risk entirely, it can definitely be reduced through screening etc.

But knowing that I wouldn't be able to handle a child with DS is also why I have sympathy for the DH (although obviously the way he's behaving to the son isn't acceptable). It's a difficult situation for everyone.

It isn't a question of holding the door open. If he leaves, she can't stop him. All she can do is make sure that he pays his share.

That could happen in any relationship
But he's still the child's father and needs to find a,way of accepting it for what it is ,I appreciate thats far easier said than done, it took me years to accept my sons disabilities.

Who do you think is cut out to be a parent of a child with learning disabilities ?
We are not some kind of special breed
Most of us are just plodding along doing our best .