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?

He expects him to understand and comply like a typical four year old and gets angry when he cant.

The trouble is, it sounds more as if he expects him to respond in the way a 7-8 year old would, which is pretty surprising. Even a 4 year old will often tend to do daft things like running away rather than complying with what their parents want.

OP, you said the problem with toilet training is that your child sometimes says no when he needs to go. If it's been a bit of time since he last went, can you just gently override that anyway and suggest he tries?

Got to admit I agree with this. He's entitled to feel all of those things, that's not the issue. The issue is that he's not working through them or dealing with them, he's taking it all out on your little boy.

I think the posters suggesting kicking him out are doing so in protection of a little 4yr old DS child whose Dad is being a bully.

I know it is hard but H simply cannot do that in front of DS. In specialist schools there is change face practice. If a child isn't responding well to the person helping them, or the adult is struggling they request a change face. But this only works if both parties can be calm when asked to step in and if it isn't always the same parent opting out for the other to always have to deal with the situation.

H's behaviour is unacceptable. He cannot do this and then refuse help to handle things better. He has to make a choice, stop being abusive or get help or leave.

Agree about contacting the school about what they expect from DS and how well equipped and trained the staff are with DS children. Ask if they have helped support toilet training before? I think the pressure needs to stop with the toilet training. It will never become easy unless it becomes a fun, non threatening process where DS feels safe and maybe he isn't ready.

None if this is your fault OP. You sound lovely and stuck in the middle alone. Are your and H's family supportive? Such a sad post and sorry you are in thus situation. There really is a special light with DS kids, I hope your husband learns to see it.

I think you're right to be worried about the impact on your son. His Father's behaviour is already having a massive impact on him.
Most of this, what happened today and previously, is a result of your husband's behaviour and not your son's disability.
I have a severely disabled son who is 38 and he still has 'accidents'.
It's a hard path you're on lass. Hard enough without having to fight your husband as well.
Keep looking out for your boy and tell your husband to shape up or ship out.

I will say that it’s good that you’re acknowledging it whilst he’s still young. I know of an adult with DS whose relationship with their mother compared to with their father is light years apart because although the dad didn’t abandon them he never really adapted his parenting approach which obviously didn’t work. You could see the anger that was felt towards the father by the child.

He need to shape up or ship out
perhoas give him a deadline that he needs to change by
no more sulking
no more withdrawal of affection
And if he’s doenst change his ways within say a month
bin him off
you will perhaps find life easier without a man baby too

tour ds is 4 YEARS old now
he’s had long enough to get his head round this
so he’s gotta sort him self out or stop adding to your workload
stop keeping the peace and call it out every single time

good luck op I hope you realise what a great job your doing and your ds is lucky to have you

Do you have a nurse specialist from the community learning disability team? This was my job for many years (now retired) and they would be the very best person to support you.
Sadly I saw so many absent fathers who had either left the marriage via divorce or had taken a job which necessitated them being away for large amounts of the time. Very, very few men stayed and were supportive.
A lot of mums told me it was actually easier once the man wasn’t there because then they only had one child to look after.
It’s a sad reflection of male selfishness.

Maybe your son going to school will help build in some structure amd learning. And as another poster said, I.think you should find appropriate parent support groups and get some help yourselves. But do make sure you only get support and guidance from appropriate people who understand disability and have experience. Maybe it would help your dh to bond with some other fathers in similar situations.

Does your husband see that his behaviour is problematic? If no, then I'm afraid you need to make a very cut and dry choice here.

If yes, and he is willing to explore his feelings then I think he'd benefit more from peer to peer support than counselling alone.

I have a 6, nearly 7 year old who is not toilet trained.

It's a whole saga, and I felt completely unsupported but now I think even if I had the support, it wouldn't have made a difference because nobody around me really understood the mechanisms behind my son's developmental disability and how it impacts toilet training. I had to do a lot of my own research into things.

Between the ages of 2-5 though every poo got washed off in the shower. It was a lot calmer than trying to tackle laying down with baby wipes. It was a stand in the tub, take the nappy off, let gravity get the most of it off into the nappy, and a full bottom down wash with bodywash. It sounds time consuming but it was actually a lot less time than we were taking with baby wipes and chasing round the house and cleaning up mess that was caused along the way.

Another thing that helped, though not in the traditional sense, was signing up to the ERIC Bowel and Bladder weiner specifically for SEN children and toilet training. Now they offered a lot of advice, and they were very responsive to questions, but none of their advice helped us with toilet training. It did help us realise we weren't doing anything wrong though.

I think peer to peer support is the best though. Our next door neighbour has a child who could have been my son, except he was 5 years older. I had no idea he was still in nappies though until his mum talked to me out in the garden and offered me some nappies because he had just cracked the toilet at 9 years old. Despite everything they had tried, it just took him till then to show an interest. Routines didn't work, rewards didn't work, recognition of any sort just caused apprehension and anxiety. She could have been talking about my child, and until she said this, I felt like I was doing everything wrong. I felt like, if ERIC were telling me that it is possible for SEN children to be toilet trained, it must just be me that's getting it wrong, but the only thing I was getting wrong was trying to force something that can't be forced. Every child is different.

What your husband needs to understand though, some people will be in nappies for life. Whether they're in nappies until theyre 6, 7, 8 or even 80, if you're doing everything you can, and it isn't working, it's not your fault, or his fault, or even DSs fault. Your child deserves love, for being where they are right now.

He needs to decide now if he can give that love. And that means not raising his voice and swearing at his child who thinks he is the sun moon and stars.

Do you honestly not know if you are being unreasonable? Honestly? Your disabled son is being treated like shit by a grown man. How can you even ask if he is in the wrong or not? Something is off with your judgement if you are letting this happen. Your child is too young to control his emotions, what's your husband's excuse? Why can't he control his as a grown man with seemingly no learning difficulties. He's a prick.

Did you know before DS was born that he was likely to have Down Syndrome? If so, was your DH fully on board with continuing the pregnancy, or was he more just going along with what you wanted?
If neither of you knew, then it must have been such a shock, and an enormous thing to process, grieving the future you both thought lay ahead.

From what you've said about DH it seems like he just can't cope with it, never has been able to, and isn't open to trying things that might help him adjust. Honestly, I can sympathise with how he feels, as I know that I wouldn't be able to cope with having a child with an intellectual disability.
But the way he's actively treating DS is emotionally harmful, and it isn't fair on DS or on you. Removing your DH from the equation might actually remove a lot of emotional strain on you, and make your life easier - it's very sad, but it's possible that separation might be for the best.

I’m sorry that you’re all having such a tough time but your DS must be your priority.

No matter how great your marriage is, if your DH is going to shout, abuse, or emotionally neglect your child, he has to go.

Adjusting to life with an SEN child is difficult but there are no guarantees with a child. He could have had a perfectly healthy child who then had a catastrophic accident. Or a debilitating illness. You never know what’s around the corner and you can’t take it out on a child just because it’s not the idyllic life you expected.

It’s even more worrying that your DH seems unaware of how awful his behaviour is. Your DS will be picking up on his mood and that will make his anxiety around toileting even worse.

I’m sorry OP, I know this is a shitty thing to have to face. But if you ignore what’s happening, you are enabling abuse - and you don’t sound like the kind of person who would do that.

FWIW, I have 16 yr old SEN twins. Neither will ever live independently and my DS is still in nappies. He also struggles with having his nappy changed, so I really do understand how hard it can be. And how unrelenting.

All the best for you and your lovely DS 💐

You cant send your child to school in nappies. Who do you think is going to change and clean him? Thats not a teachers job. Why not leave it another year.

All I have to add is your husband needs to get his shit together.
This might not be the hand he wanted, but this is the hand he was dealt.
He can join millions of others around the world who are also pissed off about their lives not turning out exactly like they wanted.
Thats life.
You make of it what you can while you’re here and try not to harm anyone or yourself along the way.
I’m sending you love from faraway California ❤️

Having worked in both mainstream schools and special needs, I can tell you your son will not be expected to be fully toilet trained. He will have a statement of special needs and DS comes with developmental delays. His individual needs will be met in school through support staff. The local authority allocate funding for him based on his needs. Many children with special needs need toileting support and not only early on.

I am having a nightmare toilet training my 3 year old, we have been trying for a year and not much progress. She doesn't even have special needs.

Of course she can. Mainstream schools can and do support with toileting needs and aren't allowed to turn away a disabled child because they aren't potty trained.

Absolute nonsense. He has Down Syndrome. It literally comes with developmental delays. He will hit many milestones later than non-disabled children. It is expected. He will have extra support in school and help includes meeting his physical needs. I have helped students with Down Syndrome with toileting in sixth form college!

I’m sorry OP, as your H has refused counselling I would be considering the future of your marriage. DS well-being is your top priority.

Odd to get stuff thrown in face from almost a century ago!!

I am going to list below some of the things you said in your initial post about H.

• H has been pushing hard
• He is really embarrassed.
• He hates taking him out.
• H now pretty much refuses to take him anywhere on his own.
• H started snapping and then shouting. He told him to fucking stand still.
• The more H shouted.
• H shouted at me
• H is tired too but not in the same way.
• H said he didn't sign up for this.
• All evening he’s been off with ds.
• This isn't a one off.
• H snaps at ds a lot. He expects him to understand and comply
• ds takes the brunt of it.

You excuse H behaviour and say he has not been cruel, I’m sorry, but your H was indeed being very cruel.
The worrying thing is that this isn’t a one off! How often does this happen?

Your precious wee boy, because that’s what he is, precious!
He doesn’t understand the inconsistent and ambivalent care that your H is providing. One minute getting adequate care then the next being cursed, and rejected.

Although this is probably a daunting thought, you need to consider splitting up. Especially as H is not willing to engage in any counselling.
With the mindset your H has, life is not going to improve for anyone and you will be walking on egg shells for evermore. At least if H is not there then you will be more relaxed, possibly happier and your son will receive care that is loving and consistent.

Well, she can. Once he is school aged he is legally entitled to a full time education. No ifs no buts no coconuts.

Lots of us with disabled kids have to send our kids to school in nappies. Maybe don't spout rubbish when you don't know what you're actually talking about.

Do you get or can you get additional help? In Australia we have a scheme called NDIS which provides OT's and Psychs etc. Can you get this help where you live or something like it? Your son will require specialist OT and possible Physio to complete TT. For reference most OT will not recommend TT until 2.5 anyway. So for special needs he is not too far off. Most DS children can and do TT.

Is there a DS foundation near you? They will likely have some family support and perhaps respite support which I would HIGHLY recommend. Even a day or two here and there if you don't have helpful family near by.

Your husband is overwhelmed and so are you and your lives are very difficult. I'm sorry. My youngest has ASD level 1 and my eldest met the criteria for ASD but is now considered 'optimal outcome' so just some residual traits. My husband grieved having children who could be good at sports like he was. I was exhausted and so was he.

I did two parenting courses (of which I am now a qualified instructor as I am a families social worker) called Circle of Security and Triple P. There are some variation for special needs children. They were very helpful for me. I would recommend you both do them but perhaps start with ways to get some practical help asap.

I agree. A major disruption like a divorce is a bad idea at the moment. It might come but getting through the beginning of school first would be more practical.

WEBINAR*** not Weiner.

Too late to edit.

Can’t believe people are advising OP to go it alone - yeah, just deal with the lack of sleep and wrestling with a growing child to clean and change him on your own - and you’ll struggle to keep a good job with extra demands from her DS,
yeah just live on the breadline too 🙄