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?

Your husband needs to relax about the potty training. School will not expect a 4yo with Down’s syndrome to be in pants, they will understand you’ve tried your best and he’s not ready.

It sounds seriously tough though, I feel sorry for all three of you.

This kind of comment is just so unhelpful.

I agree with this.

It sounds incredibly hard all round.

I know right? It beggars belief. Sulking and shouting because a disabled 4 year old isn’t toilet trained! It’s heartbreaking.

It's harder for dads to accept disabilities- that's what I have noticed around me. My DH went back and forth in denying our DS autism. We had access to parental therapy with the Cahms which helped him alot. Maybe that's a way to go? And also tell him that you would have wished for DS not to be disabled but now here he is and you need to make the best of it. And he shouldn't compare with nt children because obviously they will reach milestones quicker than your son.

I am really sorry OP. Some people just are not good at this sort of thing. My sister was very ill growing up and my dad did not handle it well (she had an illness rather than DS but it resulted in similar issues). My mum coped and was very stoical, he just didn't. I suspect couldn't.

There aren't really any easy answers. Hugs.

I understand op - my ds wasn’t toilet trained by four (LD/Autism) but he went to a brilliant special school and had nailed it by 7. I know that sounds like a long time away but your DH needs to change his expectations now or his behaviour will cause you and ds other problems.

I’m so sorry life is so hard at the moment. You are doing a great job.

Just wanted to offer you some support, OP. You’re a brilliant Mum and your son is lucky to have you. It must be exhausting; youre doing a great job.

Your DH may be depressed/need counselling/therapy/antidepressants, but ultimately he has to step up and be kind to your son. After all- you're not getting to behave like this, so why should your DH?!

If your DH doesn’t improve, you’ll need to think about what you want long term.

Don’t rush toilet training; as PPs said the school will support you. Is he going to mainstream school? Do seek out support from Down syndrome groups/charities.

Speak to the health visitor. Where I live they have community nursery nurses in the team who help with giving more support when needed for certain things - like toilet training.
Also your husband does sound like he is grieving. I echo the suggestion of meeting parents of other children with DS and also counselling.

I think you both need to go on a disability parenting course. No one expects to be changing a nappies at 4 or how to deal with a situation such as this. Him shouting and swearing isn’t ok but I don’t think it’s marriage ending.

he just need some counselling and so do you.

you both need to learn how to hand off to each other when you have reached your breaking points.

are there any books on toilet training specifically for kids with DS as the changing is distressing him?

I found this very hard to read to be honest. Shouting and swearing at a small child, continually losing temper with and withholding affection from that child -is emotional abuse.
theres is only so long OP can cope with fully looking after her son and also coping with and managing a manchild. And tbh life may be easier without this husband because OP would have one less person to manage and look after.
call out his behaviour because it is despicable!

Kids come first, bugger your marriage

Lots of children with additional needs are not able to be toilet trained before school. He may need longer and that's okay.

Edit to add: DH maybe very well be grieving and finding things hard but that doesn't make his behaviour okay. Shouting, swearing and ignoring a child is emotional abuse. He does need to get some support but you also need to let him know that this behaviour is not acceptable and protect your son first and foremost.

He needs to do some reading up on ds, he’s expecting his child to meet typical milestones and the reality is he may not reach some of them or he may take longer to reach them. He needs to adjust his expectations to the child he has not the one he wanted. And if he can’t or won’t you need to consider if your ds is benefiting from having his dad playing such a significant role in his life.
my ds has asd and is developmentally delayed he was in nappies u til he was 6 and even now at 11 still sometimes has accidents. He couldn’t speak in sentences until he was 7. It’s tough because people can’t get their head round the fact that there are some things he can’t do or can’t understand regardless of his age or how capable he looks. I’ll be honest my dh struggles at times and I have to remind him that DS is not being deliberately irritating or difficult.
DS is in mainstream school with 1:1 support and wore nappies until starting yr2 no issues with school expectations.

I would echo the posters who have said to reach out to specific Down Syndrome support groups (of which there are many). Both for counselling and also for peer support from other parents in your shoes. I have some friends with a young person with DS and have also worked with several in my career. All have said how important it is to have that peer support and community around them. No his behaviour is not acceptable but I can understand how incredibly frustrating and demoralising it can be when things are not going well or happening on the projected timescales.
I would also be trying to figure out a plan for nappy changes. Something that makes life easier and lowers everyone’s stress levels. One child I have worked with acted in a similar manner when bathing and ultimately it became easiest and safest to have some screen time during bathtime. So for a long time they had a projector set up on the landing to play their favourite episode of a tv show. It worked for a long while and eventually it was no longer needed because there was no longer any stress associated with bathing.

Do you know what it is about being changes your DS finds challenging?

Sometimes the rules have to be different with SEN children and that’s ok.
Have you got a radar key for disabled bathrooms when out and about? If not please get one for yourselves they are available from your council or Amazon. Having that may help and also look for changing places bathrooms when planning outings as they have a much larger adult sized changing table.

Hi @BaronRock i have a primary aged child who has Down syndrome. It’s tough at times but your husband’s behaviour sounds awful! Please feel free to send me a private message as there is a lot of toileting support out there and I’m happy to point you in the right direction. It was a slow process but my son is now toilet trained, don’t stress about it but do get started sooner rather than later (don’t wait for him to be ready!) x

I think this is a really good idea.

My cousin has Down Syndrome. I never once saw my aunt or uncle get cross with her. I've never thought about this until your post. What your DH is doing is unacceptable. I think he's going to leave you because he cannot handle the extra work and complications that come with having a disabled child.

Unfortunately, some men choose the cowards option when faced with difficult situations. I think it may be best for you and your DS f this man who cannot control his emotions is not in your lives. At least then, you only have to manage one meltdown not two! And your DS will probably have less meltdowns without your DH causing them.

My cousin is 45 and has a good life, is involved in girl guides and goes on regular outings with carers. She lives semi-independently in a separate part of her parents home.

Can you get some support from carers to help with your DS?

Even if he's not being a good father now, he's the only father the child has - so better to try to help him become a good father than assume that's it.
If a mother was struggling the advice wouldn't be, you're just not a good mum, might as well give up.

He doesn't have to be especially if he isn't ready and disabled. My son is autistic and fairly non verbal. I doubt he will be ready before starting school this year.

Tbf we have no idea if the Husband hates himself, because of how he feels about his Son, and that could be coming out in his behaviour. He could probably benefit from some counselling to help him come to terms with his present and future.

Do you attend any support groups for downs syndrome or additional needs?
It does sound like your DH is checking out.
It's really hard parenting a child with additional needs and many marriages don't survive.
Would DH consider some counselling?

Not what you're asking but a really supportive place for potty training children with Down Syndrome is the PADs Facebook group on potty training. I'd say your husband is not unreasonable to want to try and train, but his behaviour, lack of patience, shouting, that is all unacceptable. Husband might benefit from talking to other dads with a child with DS - could help him get some perspective.

Your DH is struggling to accept your child is never going to hit the milestone of a child without a disability. He needs to have counselling to accept it as you DS is not going to hit the milestones of someone who has not the same challenges. You need to put your DS first - he needs loving and supportive parents - not someone who is harsh and cant understand what your child has to deal with.

Your DH needs crisis counselling as soon as possible. Are you in a good position financially? I would invest in a private specialised counsellor and also a specialist nanny for as many hours as you can afford a week.

This is not a failure. This is support.