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?

@BaronRock

I think at this point you need to find a quiet moment (if you can) and ask yourself whether or not it would be easier to parent DS if DH weren't there. It sounds to me as if DH thinks there's nothing wrong with the way he's behaving and therefore no need to change. I know you'd have to do it all yourself, but his attitude and his negativity are an emotional weight on you. And emotional weights can be so very heavy. Often moreso than the extra work involved in single parenting.

Just give it some thought. And if you decide you and DS would be better off on your own, that is NOT 'blowing up your marriage'. Your DH is the one doing that. It would be saving your sanity and your health and giving DS a calm and 'positive' home in which to grow and thrive.

Good luck to you.

Jesus, why should it be up to OP to manage her h’s emotions as well as look after their ds because her h has given up?

Expect more from men. Your bar is very low.

Your dh's feelings are understandable, his emotional abuse of your dc is not.

There is unfortunately no way a bad parent can be made to step up, but I'm furious on your behalf. It's so unfair.

I get lots of threads on Facebook where people post pictures of their children with DS, showing how great they are and what they can do. They obviously mainly show the good bits, not the stress and frustration. Unfortunately that can give an unrealistic expectation for others in a similar situation.

Lovely post

Im an SEN teacher and my class all have DS. Some of mine are still not fully toilet trained, especially at night and they are teenagers. Im not saying this to scare you, quite the opposite. Your little boy is 4, some young people without SEN struggle to be toilet trained at 4. I think school will be a lot more understanding than you think. As for your DH , i actually really feel for him and you OP. I struggle sometimes from 9 til 3 and I can hand the children back. Its a really tough gig sometimes and not the life he expected.

I thought my disabled DS would never be out of nappies. But eventually got him out of them age 9. School helped as well as a learning disability nurse. Who put put me in touch with an incotinence nurse.

She suggested when he's sat on toilet to blow on something. He had a Thomas train when he blew the a whistle that's what made it go. But said he's only to use it when on the toilet. He was dry at night as well after a couple of weeks. Schools do make exceptions for SEN children. There's no blanket rule they have to be TT. If their not ready their just not ready. Can't force them.

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

I did read all of your post, but didn't need to read beyond this. Your gut is screaming at you. Listen to it.

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.

Does he think you tricked him into it? Does he think there is a get out clause in the contract? Depressingly, fathers often do just let themselves out of the "contract" by fucking off and walking away when the going gets too tough with disabled or ill children or partners. I'm gutted to be saying this, but I think you should consider the possibility that regardless of whatever you may want or do, this man may well already have one foot out of the door already.

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?

I'm really sorry. I don't have any good answers for this. Parenting course for him? He'd have to be open to learning that there is a better way than his, and potentially that his way is harmful. Making sure you both have protected opportunities to decompress?

This is an incredibly difficult time for both you and your DH. You’re both exhausted. It’s good that he is able to speak openly and candidly about his feelings and grief. I think it sounds like you would benefit from seeing an occupational therapist to help you navigate your DS’s sensory processing and awareness of when he’s soiled his pad and strategies to respond to it because it’s becoming a traumatic experience for the three of you.

Toilet training was the most stressful aspect of parenting when our daughter was young. She stayed dry straight away, pooping was a whole different ball game (and she isn't disabled). For you guys, this typically stressful stage is different level. So bear in mind that you're dealing with a stage that usually proves stressful for parents, but significantly more so given your boy's condition (thus try not to spiral on what ifs regarding how your husband feels/will feel).

The level of pressure you're putting on yourselves isn't fair on any of you. Communication between you and your husband is something you'll need to work on before having another go (I'd put the training on the back burner for now and work on the communication/plan going forward). Seek practical support too.

I think well intended impressions given to parents of children with a disability can lead to the frustration your husband is feeling at the moment; expectation may not match reality. It can be a very tricky balance, because children with down syndrome have a broad range of abilities, it sounds as though your son just isn't quite ready yet.

I’ve no advice my luv, but I just wanted to send a hug your way. It’s sounds like you’re trying to keep everyone and everything together ♥️.

Poor ds. Poor child. No matter what dh is going through, ds wellbeing needs to come first. I would have zero tolerance for someone mistreating my child. Awful behaviour

Yes it was, I was in support of that poster but my comment didn’t come across that way.
Thank you.

You’ve had a lot of answers and I’ve only skimmed because it’s late so might’ve been covered but: do you have a local DS group? Spending time with other kids with DS of a similar age and older would be so reassuring imo. Most children with DS are NOT potty trained at 4, it’s a long old slog. My DD (who also has DS) was finally trained at nearly 8 after many years of trying, and she wasn’t ‘bomb proof’ for a long time after that. It’s normal. Seeing other, similar kids might help? Have you tried social story for the changing issue? Worked with OT on strategies? We could only change standing up by that age.

Having said all the above… I’d find it hard to forgive your DH. We all have our moments of frustration, I am
by no means a perfect parent, but you don’t take it out on the child, that’s just not ok. Honestly being a single parent to a child with DS will be hard but… well, it might actually not be as hard as what you are going through now. So sorry.

I found this really hard to read I have a 4 year old and one of my older children has a little boy in their class who has down syndrome (he's in mainstream school and thriving), I just can't imagine any parent reacting like this to their 4 year old.

I hate the "you need therapy" bandwagon, but I do think your husband needs some sort of help, it sounds like he is grieving the child he thought he would have, but he's taking it out on the child you do have. Please don't let him do this, I know it is a really hard situation but it really broke my heart reading this having a child the same age, I can't imagine reacting like this to a 4 year old.

I'm sorry your DH's behaviour is completely unacceptable and you need to tell him that he is emotionally abusing his child by shouting by having unreasonable expectations and shouting at him and you will not stand for it. DH still has trauma from being abused for soiling as a young child with SEN needs. Your DH needs to agree to get some counselling to help him with his feelings or leave as his behaviour is unhealthy for your child.

DS is autistic he wasn't toilet trained by reception age and the school were fine with it, he didn't fully train until Year 2. DH is also autistic and phoned me at work one day panicking because DS had taken off his pull up and smeared poo over the entire sofa and the cats were walking in it. He didn't shout at DS, I just talked him through what to do and he did it. Told him to chuck the cats outside, put DS in the bath then once he was sorted give him something to do and sort the sofa. He managed. DH also struggled with DS's diagnosis because of his own childhood trauma at first but had counselling therapy and it helped him.

We had help from a specialist health visitor for toilet training so worth seeing if your area has someone in that role that can support. Get them to come and visit whilst DH is home too so that he can hear the expert advice if he is prepared to make a change.

Sorry you are in such a difficult situation.

I can relate because I find that my DH seems to really struggle with our DD who is going through an autism assessment at the moment.

I also find it very difficult and I of course get things wrong but I don't think I struggle in quite the same way. Of course I do feel upset sometimes when the differences between DD and her peers are highlighted, or when we face exhausting practical challenges e.g. sometimes she won't wear clothes, but I think I have an underlying acceptance of the situation that he hasn't reached. He is not letting go of a vision he had about being a parent and is still, despite his experience everyday for the last 7 years telling him otherwise, expecting that somehow today DD will eat a spinach casserole, wear socks, play imaginatively by herself and go to bed without difficulty by herself at 8pm. So obviously he remains disappointed.

I also think, when things aren't going well, that I naturally assume this means there is something that I could be doing better. I analyse what I can change about me and what I'm doing. His default is always to wonder why other people aren't meeting his expectations, and not the other way round. Sometimes this is to a ridiculous degree - even when he is red in the face with a vein popping out and at the point of shouting, if I suggest that he should take a step back in that moment because be is not coping, he doesn't seem to be able to acknowledge at all that this is the case. He just persists in being aware that DD is causing a problem, but never reflecting that he is obviously furious and on the verge of a breakdown, hence not handling it well. In that moment he may actually believe he is a calm and reasonable human. It's awful, but almost comical on some level.

I feel like some of this has to do with being a man? I think women move through life accommodating people around them, and men move through life being accommodated, such that where they find they have to spend more of their time accommodating rather than being accommodated, it's a huge shock to the system. For women that's life, so this is just more of the same in a different context. I don't know. That's my theory.

I don't have any answers. I deal with it currently by being incredibly blunt with DH as in "You are doing a terrible job just now. Go away.", "When are you going to put in more work to learn about this so that you become able to deal with it" etc. but sometimes I apply a layer of humour on top. I don't think it's working really, but I basically avoid any mediating anymore. DHs feelings just can't be on my priority list. There is no room.

I feel for all of you. For your son, who didn't ask to be born, for you who has to see the tension between your husband and son, and for your husband who presumably imagined having a child wouldn't mean having a disabled child with all the numerous extra worries and behaviours.

I don't think there's an easy answer. I think therapy for him to learn to accept his life isn't how he thought it would be might help, but you say he refused counselling, so that's difficult.

Did you and he know your son had DS before he was born? If so that must have been an extremely difficult decision for both of you to continue with the pregnancy. When I became pregnant I certainly knew and was very open about the fact that if I knew before birth that I was carrying a child with a life-changing disability I would have a termination, because I didn't want to live that type of life.
It's different if it was a complete surprise after birth because you just have to get on with it. I think whether he knew or not before your son was born will have affected how he is behaving now.

I’m sorry you’re going through this tough time OP. My ds doesn’t have Down’s syndrome but he’s autistic with a learning disability and he’s almost 11. He was in nappies during the day until aged around 7 then only came out of night time nappies in September last year. He was a smearer too which was just awful but M&S did some amazing adaptive night time clothes to prevent access which were a game changer.
we tried a few times over the years to potty train but he wasn’t fully ready. He has been at a specialist school since reception so it’s fairly normal for many of the children to wear nappies. I also have 2 younger ‘neurotypical’ children who are at a mainstream school and a few of their friends were still in nappies starting school and although a couple have some additional needs a couple don’t. It’s much more common these days and schools are usually set up for nappy changing when required. I think your son is doing amazingly well and you sound like a brilliant mum. There’s a website for potty training called ERIC that can offer toilet training information to parents and has a section to help parents of children with extra needs. I found some tips on there were helpful. But my view was always that my son would do it in his own time and he did.
I definitely do think your husband might benefit from some information courses. I do every course I can over the years and just having other parents to swap stories with to realise we are all experiencing the same highs and lows I’ve made some lovely friends doing the groups too and always learn something that helps along the way. Also maybe some talking therapy as from my own personal experience it sounds like he could be feeling depressed as is very common amongst us additional needs parents as life is not how we planned it, we had family therapy and it helped the children, my husband and I to realise how lucky we are even though life doesn’t look like how we imagined it.
lots of love to you xxx

You are right to listen to your gut. Tell your DH that he needs to urgently sort out his anger problem, and you will no longer tolerate him shouting at you or DS. Tell him if he ever feels an uncontrollable urge to shout, he must leave the room immediately until he can get himself under control. If he forgets, tell him to get out the moment he starts.

You must protect your DS from this behaviour, and make it clear to your DH that his emotions are not for you to manage, and you will always protect your son from his shouting. Your little boy does not deserve to be shouted at. Your DH needs to seek out whatever he thinks will help him get better about this, and that is his job, not yours.

This situation doesn’t sound hopeless to me. His behaviour sounds like it comes from a place of stress and frustration rather than deliberate cruelty, but he needs to be under no illusions that his treatment of his son is cruel, whatever is going on internally for him, and you will divorce him if it continues.

Oh @BaronRock, you are not being unreasonable at all.

I just did a Google search and across multiple online fora there are lots of parents of healthy, neurotypical five year old boys and girls asking for help because, for whatever reason, their kids are still not potty trained, and they are older than your DS. Your DH needs to get a grip and stop the potty training becoming a bigger thing than it really is, at least while the mite is only four, because while you say that your DS does not understand, I strongly suspect he will be making a connection between the poo in his pants and his father's shouting and refusal to give him hugs, and that must be tearing the poor little man apart.

And it isn't about the potty training is it? To your DH that is just emblematic of the life you will never have. If DS was all of a sudden potty trained tomorrow then the issue would become him dressing himself, or fastening his shoe laces, or learning to read, or any one of the hundreds of steps that children go through as they develop, some of which your DS will achieve with no problem but others he is likely to struggle with.

I don't really know what to suggest other than counselling. The truth is your DH needs to put his big boy pants on and realise that he is now responsible for a little boy who is who he is, and that boy should be his number one priority and his pride and joy no matter how messy he is. But I really don't think you are the person who can tell him this and him listen because you are too close. I don't know if you have a GP or social worker or friend or even a teacher who could speak to him, but I am sending you my thoughts. It cannot be easy having two babies to deal with at the same time.

You sound so passive.

He swore at your 4 yo and then you continued to let it go on until DS was hysterical. Why didn't you tell DH that's not OK and to leave and you'll sort it? Are you scared DH will do something worse?

I think you all need space. It's shit but he needs to decide if he wants to be an active, good dad or walk away.

I'd suggest he looks at counselling. The grief is normal but his reaction is damaging.

When you separate from a partner like this you create a safe home with a calm atmosphere for you and your child and the other parent gets the lighter load that they are basically pushing for so they tend to behave better. The Dad may not seek 50/50 custody because he resents having to do the work either way at least part of the child's week is good rather than having an angry resentful parent stomping around whenever they feel like it.

Would you consider deferring?
Sounds like a difficult situation all round, and as things stands it’s going to be tricky for the staff expected to change him.
Mainstream or special school?
Sorry things are tough, OP. I feel for you all

I know this won't be popular but your husband is going through something and isn't coping, he is so lucky that he and your child have you there to shore up his shortcomings and that you are giving your child the unconditional love and non judgement he deserves (you sound amazing and the loving person your child badly needs). It's massively unfair on your child and you but the bottom line is your husband can't fully give what he needs to for some reason at the moment, maybe he can't help that and desperately needs help and support to get on track but what he needs to do is take ownership and responsibility for that and find out what he needs to do to get his act together so that he can do better. Talk to him, understand what's going on for him and where he is at with it all - he sounds angry and grieving as you say, but you need to know what he is going to do about it or is he just going to wallow in this place? because whilst I have a lot of sympathy and understanding for the pain he is in, it's not acceptable to just do nothing and expect you and your child to suffer while he doesn't get it sorted. Find out if he recognises it's not good enough and whether he wants to work on it and take it from there. I hope you are finding time in all of this to look after yourself because you are doing a huge amount of the heavy lifting at the moment